Since being diagnosed with breast cancer, I’ve had a hard time trusting my body. To be clear, it’s not as though before I was diagnosed I loved my body deeply. Like all relationships, my relationship with my body is complicated. There’s a whole mix of love, despair, admiration, frustration, caring and neglect.
I generally feel – or felt – that I understood my body, that I knew what it needed even if I didn’t always manage to give it what I needed. I trusted that if I gave it what it needed, it would give me what I needed.
I had a motorcycle accident years ago that the doctors said would leave me with a limp and constant pain. I walked out of the hospital after just 9 days, against doctor’s orders and “treated” myself with the things I believed my body needed. And guess what? No limp. No persistent pain (except that I started having migraines after that accident – but even those have diminished to just one or maybe 2 a month).
Even the migraines responded to my personal regimen of massages and CBD and regular hot tubbing!
Then I went in for my first mammogram (on my way to top surgery) and they discovered cancer.
Here I was, doing all the right things, working out in ways I enjoyed, eating food I liked, working at something that really mattered to me, giving back to the community and being in a flourishing, loving relationship. How could I have cancer? Even a little one?!
I know, I know. Anyone can get sick. There’s no way to protect ourselves completely from cancer or any host of body ailments. And yet I could not shake the feeling that my body had betrayed me. That I had taken care of it, and it had forsaken me.
I have been running for literal decades. When I was training for a marathon, I would feel a little nervous before the long run on the weekend, but otherwise I feel good and strong when I run. In fact it’s been a go-to method for improving my mood for a long time. But these days, every time I set out, I feel a little more than just nervous. These days I’m not sure I can trust my body to do even this simple thing, putting one foot in front of the other, over and over. While my body feels more like me than ever before (remember all this started with potential top surgery), it also feels less like my own, somehow. It feels like I don’t know my body. Like I’m not sure how it will respond, or what it will do.
I’m glad to be recovered from surgery and revisions (just so you know, I had a TERRIBLE experience with multiple surgeons at UCSF – I’ll tell you the story if you ask). I’m glad I had health insurance and a partner who loved me through all of that. And I’m glad to be cancer free. And at the same time, I’m worried every time I go to run or work out.
Relationships are complicated. Guess I will have to make peace with that.
I don’t have games on my phone. I used to do duolingo (before the app got taken over by AI – Atrocious Imaginings) and word games before I knew the level of treachery at the New York Times, but that’s it. Total transparency – I do have insta on my phone. I know it’s also awful in many ways, but I’m far from perfect. And so when I’m on my phone, most of the time is spent messaging folks (we love a voice message around here), watching a youtube (yes, yes, there are problems there too) on how to manage some crochet thing, or reading a book. Plus I call my mom once a week or so. That’s it. My phone spends most of its time in a phone stand.
Caitlin, on the other hand, is VERY attached to her phone. She doesn’t do games either, but she nearly always has it in her hand. She reads a lot on her phone, and she has many more people to text than I do, plus scrolling, and YouTube. Then about a month ago she started using WaterMinder. She really appreciated the gamified way the app got her drinking more water. Every time the reminder splashes, we all sing out WowTER in big voices.
I admit that I give her a hard time about how much she’s on her phone. And she gives me a hard time when I don’t pick up or notice that someone has texted us. (bonus track at the end for more on that) That said, we were pretty comfortable in our two camps, phone-on-stand vs phone-in-hand.
Then a friend of ours was wondering about a gratitude app that we could use and share our gratitudes without too much pressure. Caitlin is kind (and as I said, very attached to her phone) and she went on a search. What did she find? She found Finch.
If you are not aware of this app, the website says:
“Meet your new self-care best friend! Finch is a self-care pet app that helps you feel prepared and positive, one day at a time.
At Finch, our goal is simple: to make daily self-care something you actually want to do — not something that feels like a chore.
We know that building healthy habits can be hard. Life gets busy, priorities shift, and it’s easy to put yourself last. That’s why Finch was created: to be a gentle, encouraging companion that helps you take small steps every day toward a more supported, balanced version of yourself.”
What they don’t tell you here is that there are cheerful chimes and rainbow stones you collect when you complete a goal. And with those rainbow stones you can buy outfits and furniture to decorate your birb house. That’s not a typo, that’s what Finch calls it. You can get micro-pets and bonus points for completing goals in different areas like Connection, Calm, Gratitude (yes, that’s how she found it), Movement and Self-Kindness.
So then wherever I was in the house I would hear this brrring! sound as well as various cheeps and dings. Caitlin thought it might function as the gratitude minder she was looking for and so I downloaded it too.
And guess what? They have some decent psych-science behind what they are doing. And it does work for the Gratitude Goal in that it reminds us to share a gratitude (in the app you cannot message each other – beyond sending Good Vibes that the app writes for you). It turns out the brrrring! sound is really fun (and motivating)! Our friend did a lovely job of decorating and dressing up her birb – and they even had a white-cane for Caitlin and sports headphones for me.
And nowadays if you were able to listen in at our house you’d hear laughter, Maite talking, singing and…brrring! Finching. I still don’t keep my phone quite as handy as Caitlin does, but I do pick it up just to log my goals several times a day. If you decide to join, and you know either of us, let us know so our birbs can be friends!
Image is a screenshot from Finch with Caitlin and my birbs and micropets. The background is a forest scene, green grass, trees, that kind of thing. Caitlin’s birb is on the left with her baby bat. She is holding blue pom poms, is wearing a rainbow shirt and is smiling and dancing. Her thought bubble has what looks like a scared robot. Next is my birb’s pet seal who is quite a bit larger than the bat because I didn’t know I could keep it from growing up so it reached toddler, I think. Then my birb is sitting on the ground next to the seal. My birb is wearing a multicolored striped shirt, red glasses, sporty headphones and has sideswept brown hair. Its thought bubble has a sailboat.
Bonus track: The other day Caitlin left me very early to do things with her mom, and I was supposed to take Maite to the vet. I was so tired, I fell back to sleep after she left, not my usual behavior. When I woke up, I leapt out of bed to give Maite her pre-procedure meds. Then I dressed and took her right outside for her walk so we wouldn’t be late. Back inside, I took a quick shower and got dressed. As I was pocketing my keys and wallet, I unlocked my phone for the address of the vet. Imagine my surprise when I saw multiple missed calls and texts from Caitlin. The vet had called, apparently, while I was blissfully sleeping and then tried her phone. They had to cancel Maite’s procedure and wanted to reschedule. Caitlin then proceeded to call me, text me and call our neighbor to get him to come and knock on our door (he didn’t. or if he did, he did it while we were out walking). I promise you, I would have looked at my phone before I left, but Caitlin really needed that immediate response!
I’m sure it’s very easy for folks to come home from a mobility immersion like mine and, albeit unintentionally, slip right back into old patterns. Sadly for them, they don’t live with Doc Martha, who is all about “consolidating learning” and treating each new day as an opportunity to create positive change, both in your own life and, you know, The Big World!
As soon as she picked me up from the airport, Martha was all, “So this is the new arc! Looks different!” and, when we came upon our first staircase, “Show me that anchor thing.”
Martha and I still walk Maite together most summer mornings, but because this generally involves lots of about-faces and off-roading, I continue to use my cane in my right hand and hold Martha’s hand in my left to be guided.
After my return from Michigan, though, we’ve also started taking short walks, sans Maite, after dinner, with the idea that I’ll walk some useful, short routes, write them out, and eventually walk them independently.
So far, we’ve gone to the post office to drop off a piece of mail (functional mobility!) and to a little joint near us called All Night Pizza, which wounded me by not having chocolate ice cream on the night we went (I could have gotten their fried chicken, if I’d wanted, because I like theirs a lot!).
On both night walks, I walked entirely solo: unattached, no physical guidance, while Martha walked behind me and didn’t assist or run block, other than to give me initial directions, reminders, or help with street crossings (more about that in a sec). We typically walk around the neighborhood linked up, so this is definitely a new habit for us. Also, during walks, if things are calm, Martha will often stand behind me at a street corner with Maite so I can practice just crossing without an attached route.
On our first walk (to the post office box), I immediately became frustrated. I followed the directions fine and wanted to show off my new skills … but, unlike in Michigan, SF has tons of hills! Even in its streets! I kept veering wildly, probably because I was so focused on walking quickly that I didn’t notice I was following a downhill slope instead of keeping my straight line. (In other words, the hill lured me into a false sense of straightness—no pun intended—and caused me to veer.)
One time, I ended up on the wrong up-curb altogether, which horrified me. I … didn’t even know that was possible? Was it possible to have done that in Michigan and I just … never did, magically? Did I miss something?
Anyway, I hope the hills are the problem, and that I can practice those streets enough to learn how a proper crossing feels beneath my feet, even if I am going against the grain of the street. Still, all this quickly put me into an angry tailspin re: can I seriously not go anywhere without there being unforeseen (haha) obstacles? There were some high notes, though. I definitely got significantly less hung up on sidewalk junk, thanks to my narrower arc. Often, I made perfect or near-perfect crossings, although, of course, even without the added hilly complications, these streets are just … different, so different things happen. I always just seemed to hit the domes in Michigan and be lined up right, but our streets are not nearly as straight and nice. So sometimes, even when I tried to line up with the inner curb, it wasn’t quite right, and was only helped when I also compared with the outer curb, which Jeffrey and Hannah told me I didn’t really need to bother with in Michigan.
So I kind of just … realized that the skills I gained are absolutely fantastic, and I learned a lot, and I was and am super stoked and happy and proud that I went and that I learned so much. AND, because two things can be true at once, I hate that the job of being a competent traveler will never be done. They did warn us about this, and I always knew it intellectually, but I still hate it. Especially in terms of blindie things, I like to go after a skill hard, get my proverbial Girl Scout badge (or rainbow stones from Finch) proving mastery, and then move on to the next thing. But mobility isn’t like that.
I know Leader Dog can even send an instructor out here to work with me at home, but, at this stage, I don’t want that. It feels unfair to have to do that when I already feel like I did so much work.
I wish there were, like, short courses for my sighties, so they could become impromptu mobility support ambassador people and immediately know tips that could help me in any given situation. I resent feeling like I need “legit” mobility instruction to puzzle out and plan for the intricacies of every new route.
I do know that, between the two of us, Martha and I can probably figure out a lot of things, and I just need to be patient, and stay willing to practice. It just felt hard when things didn’t immediately go right. I remember feeling this way after coming home from guide dog school, too, interestingly. It’s quite a leap going to an environment where there isn’t an immediate fix or suggestion to an accessibility or blindie skills-based problem.
Someone in Michigan (I think it was Jeffrey, but maybe somebody else we heard from) said that mobility is often hardest in our own neighborhoods, just because people we know might be around and have their own reactions, comments, or feelings to us moving through the environment. Martha and I had a cute situation like this. I was crossing a street and our next-door neighbor, whom we affectionately call “Uncle Wayne,” because he has dubbed me his niece, saw me from the other side. He helpfully yelled, “Come toward me!”
Martha shushed him, and I playfully yelled back without thinking, “No! I’m doing it myself—watch!”
I hit the curb a little off-center, planted my feet (per the technique), swept to one side, found my domes, and sailed up the curb into a good old Uncle Wayne hug and fist-bump. And that was it … because Uncle Wayne is chill and did not freak out about me walking across a street untethered to Martha. I love that guy. I may or may not have jumped up and down and bragged a little.
Martha has also definitely had to wave people on when they try to yield to me as I wait for an all-quiet, all-clear. There was a hilarious moment this morning, on our Maite-walk. Martha and I had detached so I could cross a street solo, with Martha and Maite behind me. A car idled; Martha waved her on and told her to go ahead; and, as she drove through the intersection, the driver audibly grumbled at Martha, “I don’t know what you think you’re doing … you’re supposed to be holding her hand.”
Looool! I know I’m supposed to be ashamed that, because of my example, this woman possibly thinks that hand-holding equates real human guide, AND that Martha and I presumably hold hands on Maite’s walks so often that this woman thinks I’m incapable of walking by myself. I still found it funny and knew her heart was in the right place. I mean, if I can’t hold hands with my wife, what even is the point of my life? I don’t care what the “proper sighted guide” haterz say. This is a hill I would die on. Also, I still maintain that I get much more information and cues from Martha’s hand than I do from anyone’s elbow, even Martha’s. I’ll die on that hill, too. Come for me!
Poor Martha was just like, to me, “I don’t know why that woman just yelled at me.” Heh. I told her that, next time, we can explain that I’m “practicing,” or “learning.” In my experience, those quick buzz words seem to calm people down when they panic about seeing a blindie caning around in the wild while their sightie, seemingly cavalierly and irresponsibly, looks on without assisting.
Interruptions like these, however, don’t bother me. I feel better, in fact, that our people are watching out for me. Seriously, though, I need a resource on which to share these incoming mobility woes and struggles. We have forums and sites and email lists and What’s App groups for blindie notetakers, computers, phones, braille, cooking, shopping, guide dogging, dating, even traveling with the help of Meta glasses. Why don’t we have one for trading good old-fashioned cane hacks? There’s so much lived experience we could all share. We could even have mobility professionals join, once a blindie or two has approved each one and determined that they aren’t paternalistic, saviory, or blind police-like. If I didn’t despise mobility so much, not to mention the way social media has become so janked up re: accessibility, I’d seriously start something. How has this gap not been addressed?
Oh, and for anyone who cares, Martha found me a great, stretchy new fannypack to replace my Braille Sense’s side-bag. So now my cane hand and arm can move freely, but I still have my stuff on my person. And she found tennis tape in cool new colors! AND, my wrist and arm are no longer sore as I use my new, narrow arc and grip closer to the top of the handle, so I’m back to my glittery rainbow canes. Hooray! My aesthetic still lives, mostly.
Stay tuned to this space, if you so desire. Probably, if I can stay in good habits, I’ll start blogging about other things, not just mobility (let’s hope, since I don’t even LIKE mobility, geez!).
I attached my micropet’s egg to my Writing goal on Finch, so I’m motivated to write every night, heh. (That will make no sense unless you have the Finch app. Which, if you do, send me your friend code, please and thank you. I will send you presents and vibes on there for suresies.)
As I used to say on good old LiveJournal back in the day, “Tootles!”
Shout-out to my dad for reading my blog, even though he doesn’t like to read! He was like, “Wow, you really like to write!” Heh … he knows this, but must have forgotten the extent to which I can ramble.
I’m writing this as I fly home. One of my cohort is on the same flight, so we braved the airport together. More about that in a bit.
So Friday was our last day. Hannah and Jeffrey, doubtless not wanting me to worry (which I tooootally would have, so good job on their part), explained that I’d basically be doing a scaffolded dropoff. Hannah would pretend to be a clueless Uber driver. She would give me SOME useful information to locate where I was, but not a full route. Jeffrey would be with me the whole time if I needed help; I’d just need to put up a hand. Hannah would park the car and then join us.
Of course, I IMMEDIATELY started to panic. I hate hate HATE dropoffs. They are my entire worst nightmare.
Now, Jeffrey did say, at the beginning of this week, that we might do a dropoff, IF I was ready. I assume that scaffolding the dropoff was their way of acknowledging my absolute terror and hatred of the activity. But I think, in my head, I assumed they’d do more of a, “Remember that route we did once or twice? Yeah, do that by yourself.”
But, in hindsight, I also think they wanted the route to go well, so I’d feel more confident going home. I could have told them that that was unlikely to happen.
Still, when they proposed the dropoff, I thought to myself, “Well, I’m here, and they’ll be there the whole time … the worst thing that happens is that I panic in the middle and fail.”
They also impressed upon me, in the car, that they wanted me to do my best and push through the discomfort, as much as I could. In just a few days, they don’t know me well enough to know that I rarely give up in the middle, even with things I hate. I mean, okay, with certain people, I’ll just give up and let them help me. But with other things, my pride gets involved, and I don’t want to be seen asking for help, no matter what.
Anyway, my destination was a pharmacy. I had the address. Hannah The Uber Driver gave me some pretendedly-vague directions re: what street she “thought” we’d just passed (“So pharmacy might be behind us”), what street we were on now, and what was around (“There’s an alleyway to the left, and a sidewalk to the right”), etc.
But when I asked, “So when I get out of the car, which direction should I go?” or “Do you have any idea where X street is?”, she demurred.
I hissed to Jeffrey, “What else can I ask her?”
He kind of chuckled and was like, “She just gave you a lot of good information there.”
Well, probably she had … if I was the sort of person who could, you know, hold that in my head and mental-map … while panicking.
So I was kind of upset right from the get-go and was like, “Well, okay, I’ll just … do my best.”
What a horrible feeling (for me) this kind of situation is. I seriously can’t even begin to describe it. At least here, in Michigan, it was nice and quiet, without all the hustle and bustle and terrible racket of San Francisco. But still, my throat and mouth go all dry, I feel like I’m going to cry, and all I want to do is grab the nearest person and just ask them to either guide me to where I need to be or put me in front of a destination so I can get an Uber there.
Again, I’m not ashamed to admit it … but I totally am. And I feel completely compelled to all capitalistically be like, “Whatever, I spent the last ten years of my life fighting tooth and nail to get and keep the job I wanted … what have YOU done with your life?” Which, I know, isn’t even helpful. But I still want to make all kinds of justifications about how mobility never felt accessible or relevant to me, and how can people expect me to do something that makes me feel so fundamentally terrible and unsafe, etc. etc.
Anyway, back to the moment. I don’t even remember all the things that happened. I think first, I just … walked. Now, even as I did that, I knew — I totally knew! — that the right thing to do would have been to stop, think, and try to plan. But I was just like, “How am I supposed to plan when I literally have no idea what to do?”
Now, we were on familiar streets, let me name that. There’s a grid system, and then there are numbered streets, streets with tree names, etc. So all of that was familiar to me. We’d worked with those things. And I quote “should” have been able to do something with that information. But I just … could not. I couldn’t at all take the information Hannah had given me, apply it to what I already knew, and then extrapolate from there to figure out where I ought to head. So I was, quite literally, just “walking blind.”
I think my first plan was to ask someone for directions … but, of course, no one was around. I hit a couple of driveways, didn’t know if they were streets or not, and pulled out SIRI for walking directions. She, of course, was only moderately helpful, but did indicate (sort of) that I was going in the right direction. So I kept going.
Jeffrey, I might add, was right behind me, thank God. And he did talk to me, double thank God. If he’d done the whole, “I’m silently walking ten feet behind you … or am I?” thing, I would have lost my entire shit right there. But he didn’t, because I’d already told them, at the beginning of the week, how I cannot abide that.
Next, I think, was when I ran into (or rather aggressively pursued) some construction workers. This took me off my line of travel, but I didn’t care. As it turned out, they were clueless and didn’t know where the place was, but gave me their best guess. I turned around and went their way (which, thankfully, wound up being correct).
Jeffrey also let me know, at that point, that I was walking in the street.
Me (frustrated): They should have told me that! … Although I guess that’s not what I asked, but still!
They had also told me to cross at the next corner. SIRI told me something different, but I ignored her because (a) I wasn’t convinced she was giving good or particularly accessible walking directions anyway, (b) she said something like “turn right on X street,” and I didn’t know if that was the street I was on, and (c) again, it just seemed more … safe to just keep going and act like I knew what I was doing, even though I knew in my head that that was the opposite of helpful.
I know everyone always says to slow down, stand still, and think … but in the city, you CANNOT do that without everyone swooping down on you, pushing and pulling, and offering help, whether or not you need it.
People are ALSO always saying, “Look confident! Look like you know what you’re doing! Don’t hesitate, or people will mess with you!” I knew Jeffrey was right there and nothing was going to happen to me, but I just felt like I was in total Fight And Flight mode and couldn’t just stop and think.
Anyway, I had no idea what to do. So it wasn’t like I had anything I could pause and think about.
So, I crossed that street and was like, “Ooh, maybe they made this REALLY easy for me and the pharmacy’s right here!”
I blazed up the first staircase I found, which had one of those cloth things hanging at knee-height over its doorway, indicating it was closed. So, undaunted and still hopeful (and ridiculous), I blazed back down the steps and was about ready to ask at the NEXT building when Jeffrey was like, his… I’m gonna pause you right here, friend.”
He and Hannah very kindly talked me through what had happened so far, praised my good arc and my crossings, and whatever other kind things they could think of. They also gave me a couple hints. I was SUPER close to tears by then, but (of course, because I’m me), I acted like I wasn’t and just kept going.
I think I crossed a few more streets (nothing big, just all-quiet all-clears), then ran into some people who were eating outside. They knew where the pharmacy was and confirmed that I was going in the right direction, which amped me up a little.
I kind of forget how everything ended. I seem to recall that I had to cross a bigger street (like, with a stop sign or light), and was appalled that they’d make me do that for a dropoff, haha. But now that I think about it, I seriously don’t remember lining up for and crossing it. Oh, well, whatever, you got the highlights of the thing.
The point is, I got to the pharmacy, with their help. Again, I was still mega-tearful. Jeffrey, perhaps deducing this, didn’t talk about the dropoff at all but, instead, answered one of my questions from earlier by teaching me an abbreviated cane technique to use in crowded stores. I’ve always just choked waaaay up on my cane, but Jeffrey advised using a pencil-grip. I asked if there was an alternative, because pencil-grip has always been really hard for me to maintain; it feels really unsustainable and makes my fingers hurt almost immediately. Hannah showed me that, instead, I can tuck the top of the cane under my arm, or farther back, more like against my ribs, and then use my standard grip along the shaft, below the handle. That worked really well.
Jeffrey showed me all around the store and had me follow him using this technique. This meant that he was able to steer me around pharmacy junk. He was also telling me all about random things in the store, and I was thinking to myself, “Wait, is this being videoed for his portfolio?” Because he’d also told me, earlier, he still needed videos for his class, and would I mind helping, and I’d said sure. But he’d said we’d do that AFTER the dropoff. So now, in hindsight, I think he was randomly going into vivid detail about the store so I could pull myself together and get my bearings.
Back outside, they had me cross the street again so we could get back to the van. (Again, mind-blowing to me that they don’t just default to, “You’ve just been through a tremendous ordeal; do you want human guide?” But I liked that! I rose to the occasion! Because I COULD do it, with their guidance, and it felt like it gave me some of my confidence back.
Jeffrey did help me a little, although now I can’t remember how … I think just because I was still a little flustered.
At the van, I was just blithely like, “Okay, now we’re going to do sidewalkless technique and your video, right!?” Again, classic Caitlin, to the tune of, “Can we please not talk about this!?”
Jeffrey was like, “One thing first,” and then gave such a sweet little speech about how much he appreciated my courage in doing something I hated, and something I hadn’t done in twenty years. Again, he praised my arc, and said my crossings were great. Hannah echoed him, adding that, even though I’d thought I didn’t know anything useful, there were a few clues I could have used. For example, since we’d been there multiple times this week, I knew that the street the pharmacy was on would be very loud. So, in a few places, I could have listened for a loud street, figured out where the noise was coming from, and made more correct, timely turns than I did. (She said it WAY more kindly than I’m writing it.)
They also did tell me, as I’d known they would, that it behooves us to slow down and make a plan, not just run amuck and not listen to SIRI (again, they said it much more kindly). They also named that my focus seemed to be to hop from one person to another, rather than listening to my own internal sense of direction, or even to SIRI which, they said, did give me correct directions that one time. They said they could tell, a few times, by my body language, that I wanted to go with Option A, but then I second-guessed and went with Option B, when Option A was right.
I think this was actually two conversations: one was IN the Pharmacy, and then Jeffrey stopped me before getting into the van to give me more of the Pump-Up Version, re: “There were many positives you can take away from this experience — many things you did well — and you have a lot to be proud of. I don’t want you to go home and beat yourself up over how this went.”
Of course, again, when anyone is kind to me and I feel fragile and upset, I’m just … a wreck, so I just kind of nodded along. I wasn’t about to beat myself up over how this had gone because, in my mind, there was no way it would have gone any differently than how it did, even with the scaffolding of them nearby and an easy, immediate out, if I’d needed it.
This isn’t to say that I don’t think I could EVER do a dropoff. But I know myself and my skills right now, and unless I know the route, or at least a piece of it, I’m not going to figure it out. Even given street names in a familiar area, I just have such a hard time being able to piece things together and put them into a map. I’ve never had anything even resembling a mental map in my head. The best I can do is write and follow a list of detailed directions: my own, non-image-based map. So unless it’s on my proverbial map — unless I’m familiar with enough elements of it to figure out where a thing lands on my “list-map” — I’m not going to find it. At least, not at this stage.
Still, I appreciated that Hannah and Jeffrey were being so kind, and that they’d had enough faith in me to try this. I truly know and believe that they were doing their best to set me up for success, and that, after only four days of working with me, it would have been impossible to gauge if I was just being self-deprecating when I said I could not do dropoffs. I can understand how some of the things I’m able to do might make me seem like more of a capable, competent traveler than I am … and that’s not me putting myself down. I think I have good spatial sense, and that I got a lot better at crossings and technique this week. But a “structured discovery model,” as many folks call it, just has not worked well for me. And because it was always forced on me, I think being thrust back into that (to me) horrible scenario, even with guardrails and kindness, was really activating.
For Jeffrey’s video, we did some work in an area without sidewalks. I vaguely remembered this from guide dog school; you do a thing called “indenting,” where you follow the sidewalk as it turns, then gauge when it has straightened out and then flag and cross.
Knowing how I always love when my kids do something epic while I’m videoing for evaluation, I asked Jeffrey a bunch of questions, like a nerdy, attentive student (which, in many ways, I am). They were questions I genuinely wanted to know the answers to, but I also knew they’d give him extra time to shine in his video, haha. The benefits of having a student who’s also a teacher in your video!
Also, though not on his video, Jeffrey told me the mnemonic for sidewalkless crossings is, “Ass in the grass,” which made me laugh. (As in, you square off with the grass behind you in order to cross, so, you know, ass in the grass.)
I also cited, for the record, as I had a couple of times before, that I still get completely confused after multiple street-crossings or cross-overs and lose total track of the direction in which I ought to be traveling. Jeffrey reminded me about using the sun as a marker when available, plus listening to parallel traffic and other clues, to get back to my line of travel.
We went back to the main building for our outtake (opposite of intake) interview.
First, I rated myself on various mobility skills, like I did at the beginning of the week; then Jeffrey added up the total. I was shocked that my score had gone from 13 out of 30 at the beginning of the week, to 21 out of 30 now. Jeffrey even said he would have given me more points on a couple items than I gave myself, and Hannah agreed that I’m more critical of my skills than she might have been, if asked to rate me. So that was genuinely nice and uplifting. If nothing else, I think I’ve gained a lot of confidence moving through space solo, and really, truly polished my cane techniques.
We also went through my list of goals; it turned out that we’d worked on almost all of them. Jeffrey definitely talked about stop signs versus stop lights versus controls; that’s always been something difficult for me to analyze by sound at an unfamiliar intersection, and because we were working on so many other things, I didn’t think to ask more clarifying questions and be more intentional about learning it.
Around about this time, Jeffrey mentioned the dropoff again, citing that it had been such a long time since I’d done something like that. For whatever reason, I started trying to remember precisely how long it had been since I’d jaunted off somewhere by myself without family, friends, a driver, or someone immediately to hand, even if it was a stranger, who could help me. That got me remembering when I first got to college at UCSC.
Even though I was terrified to be away from home, with no one I knew, I was also bold. I went off to events, not knowing where they (, who’d be there, or, sometimes, even how I’d get home. I went to the dining hall, where I depended on the staff to help me get food (which was awful because … feeding Caitlin is an art form), and sat either alone, hoping someone would come sit with me, or with randoms.
I had Lannie for some of that, but I was also realizing that the cane might serve me better, and because he had to go home sometimes for a cappella things I didn’t want to bring him to, I did do a lot of that with my cane.
CONTENT WARNING: Non-graphic mention of assault below. Skip to the next three stars, or use Find for the word “somehow,” if you need to skip.
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I was thinking about all that and realized the inevitable: that when I was sexually assaulted (though not violently) in November of my freshman year of college, by someone I thought I was a friend, my mobility confidence took a big hit. Not that the assault happened while I was out and about — it happened in my room — but I became so much more sensitive to being grabbed, pulled, and just SEEN, after that. I relied SO MUCH on Acquire and classmates to be my buffers, to keep me insulated from strangers and their unsolicited grabbing and “help.”
I couldn’t tolerate the risk that someone would grab or touch me unexpectedly, and it happened SO MUCH. It still does. People are often surprised, because I was and am such a touchy-feely person, but when I was raw and mentally frightened like that, I would lash out at people, sometimes even hit them, when they put hands on me unexpectedly. And I know that people who grab blind folks without consent DESERVE to get hit. But I don’t like feeling volatile like that. And I hate who I became after that even more: a person who, when alone, walks around tense and on-guard, and is much more likely to freeze and just let people haul me around.
It truly can feel like being constantly retraumatized, constantly reminded that my body isn’t mine, that I have little to no control over what happens to it. The most foolproof solution, then, was never to put myself in the position where I’d be overwhelmed with all those feelings, and reminded of the vulnerability that often runs hand-in-hand with blindness. That meant not taking chances, not doing mobility solo, not moving through space alone without someone to run block.
Somehow, all of this was running through one side of my brain while I was still keeping up with Jeffrey and Hannah and genuinely absorbing what we were talking about re: mobility this week. But at some point, all the thoughts just became really overwhelming.
The only words I could get out were, “I know a lot of it is all in my head.”
What I meant by that is that so many people have told me that, actually, I’m good at mobility. I have the skills. I even have the confidence, to some degree.
I know they’re right, that my fear and dread are in my head, that I CAN do it. I just don’t WANT to do it. At times, I feel like I can’t do it, like it’s just too raw and scary to be in the world alone especially presenting as I do: young, female, and disabled. Because, if two people who I thought were friends took physical advantage of my trust and vulnerability — and they did — then how am I supposed to have faith that the rest of the world will be kind?
Some days, I can, and I do. But on other days, and in some situations, especially when I feel powerless and like I don’t know what to do, I just … can’t. And maybe, if I wanted to work and work and work on it, I could force myself to do better and feel better. But I just don’t know if I want to.
This is why I get so mad when people, blind and sighted, say things like, “If you don’t have all the skills, you won’t get anywhere in life as a blind person.”
First of all, being successful can look like a million different things. And so can mobility. I’ve gone to conferences by myself, without knowing anyone. I’ve flown by myself countless times. I’ve taken the bus from San Francisco to LA. I get to my job every day, sometimes with Martha and sometimes on Para-Stranded. When I need to get there, I make it happen.
I can find my way just about anywhere I want to go. And I’ve done all that while doing my best to keep myself feeling secure and comfortable. Even if it means extra time on Para-Transit, extra planning, extra creative thinking, I’ve done it … and I don’t mind doing it, because that works best for me. And I think innovation and ingenuity ought to be worth just as much as always doing mobility, quote, “independently.”
My choices are respected to some people, but many others can (and do, often to my face) scoff, shake their heads, and tell me I’m not doing blindness right, or respectably, and that I’ll essentially grow up someday and “see” the error of my ways. But truly, now, I don’t care about that … at least, most of the time, I don’t.
My number one job in life is to preserve my own sanity. That doesn’t mean I won’t ever push myself, try new things. Clearly, I’m willing to push myself. If I weren’t, I never would have done this program. Even five years ago, I never would have done this program.
I wanted to be better, to do better, and I did. But I think I also still need to make peace with the fact that mobility is tangled up in a lot of really upsetting things for me: things I never really worked on, or brought to therapy, because there always seems to be so much else going on … and, yes, probably just because I don’t want to talk about them.
Anyway, since all I could get out was, “I know it’s all in my head,” Jeffrey and Hannah did what they could to speak to that. I think they thought I meant that I let other people’s voices influence me, and that people discourage me or don’t believe I can do things. Which is funny, because, actually, it’s completely the opposite. People are always telling me (some kindly, and some in a Blind Police-like way), that I have the skills to be better, and that it’s just will, not skill, holding me back. I can’t, off the top of my head, think of anyone of note, who knows me well, who doubts my capabilities. And I know I’m lucky to have that. I am. But it also means that, often, I worry that I’m falling short, that I’m disappointing people.
So yeah, it was heavy, and a few tears sneaked out … but of course I wasn’t about to go into all of this and open up a whole therapy session nobody signed up for.
Okay, on to the lighter stuff.
We worked together to set three goals for the next thirty days, at which point Hannah will call me to check in. Jeffrey The Best Intern Ever will be off on his next adventure, but Hannah did say she’d share my progress with him.
CAITLIN’S THIRTY-DAY GOALS
1: Plan a route with at least one crossing.
I know myself; if I could get away with it, I’d do a route without a crossing. But I’m challenging myself. SEE!?
My hope is, perhaps, to Para-Strand or cab to Destination A, hang there, then learn a route to another high-interest place, Destination B, that’s technically walkable from A, but which I’d typically take another cab to get to, if I were by myself, to avoid a solo route. Like, say I go to a restaurant I like, and then want to pop across the street to a Walgreens to get something. That would be perfect, and would avoid a one-minute Uber ride.
I’m crossing my fingers that Martha can think of a reasonable, high-interest scenario that doesn’t have too many terrifying street crossings between the two destinations. If I get really used to it, I do think that’s one thing I could do by myself, with a ride on each end. But I’d want to run it a time or two first.
2: Go to the beach or on a short hike, using my new Dakota disc and Jumbo Roller-Ball tip, to see which works best when.
I’m hoping Martha will be excited for this, because she loves to hike, and I’ve hitherto been whining that it’s boring. But I’ll have more fun if I can play with my new tips and do some solo walking to practice my skillzzzz!
3: Use Para-Transit to get to the mall; then, plan and perform a route to two stores.
— I seem to recall that Para-Transit usually has a designated entrance and pickup spot for our malls, which will actually be helpful as a home base for planning a route.
Martha’s allowed to help me with this one. Actually, I assume she’s allowed to help me with all of them. But I quibbled this one a bit, because I think it will take me longer to learn routes in the mall, with all its hustle and bustle and ruckus. Jeffrey said that planning and performing the route can happen at the same time, with or without any type of guidance. I’m down with that.
After outtake, I got a Leader Dog sticker for my cane (Hannah said it was the best job she’s ever done re: sticking it onto a skinny cane without getting bubbles in it), and Jeffrey gave me my own Dakota disk. Yay!
Then I went back to my room, had a good little cry to Martha and our friend Amy on Signal, and went to our last lunch. It was bittersweet because one of our cohort lives in Michigan, so was being picked up right after the graduation ceremony. So it was our last time partying down as a fivesome.
The graduation event was very sweet. They had it in the Banquet Room, with fancy tablecloths and those cool scallop-edged paper placemats I was obsessed with as a kid (okay, I still think scallop-edged paper is cool). One of our cohort pointed out to me that they were gilt-edged; you could feel the shiny goldness at the edges of the scallops, too!
The ceremony itself was quick. Lots of accolades from the instructor who ran it re: our bravery for coming so far, for pushing ourselves, and for being dedicated to making our mobility skills better. Most of us said a few words, and a couple of our cohort cutely cried (yay for feeling emotions in public! I need to learn from those folks.)
All our names were announced, and we each got a Leader Dog pin on a graduation card.
I vividly remember how pathetic my speech was when I graduated with Lanniekins (I was too overwhelmed with feels to speak eloquently), so I fully intended not to give a speech this time. But since we were all sitting at a table, and I wouldn’t have to get up and be awkward, I did give a little speech (we all did), expressing how proud I was of our cohort, how neat it was to hear everyone’s stories, and how I’ll definitely be telling all of blindkind about this program, its top-notch instructors, and the way this program truly treats us as individuals and enables us to work on our own unique goals, rather than some cookie-cutter model of what we “should” learn and “should” be doing.
Craig from the kitchen made me another chocolate-syrup-with-a-dash-of-vanilla sundae, and I’d brought my dark Oreos to crumble into it, much to everyone’s amusement. Everyone else had Italian sodas and various other snackies, and we took a group picture. I took a pic with Hannah and Jeffrey, too, and gave them each a big old squeezy Caitlin-hug before they left. I couldn’t believe how much I’d come to like and trust them over the week. I mean, they’re mobility teachers! (Kidding, kidding.) But seriously, it was very hard to say goodbye to them without breaking down.
Then we had delicious pork for dinner (it was soooo tender and juicy, and had little fat pockets throughout, plus yummy seasoning and crispy edges … I think it was my favorite meal there … even better than the sirloin steak, which tasted too smoky for me). Then I talked to my mom and Martha and, you know, did my Finch app before going to bed at 8:30, because I and my buddy Bill had to leave at 5:15 to catch our 8:45 flight.
Even though I gave my leftover snacks to the college kid in our cohort, I still had a job squeezing everything into my huge backpack. I’m not a good packer, especially when I’m impatient and can’t be bothered, so I’m sure I didn’t do myself any favors. But I got it all in. We had a driver and a driver-in-training from a contract company, so not a Leader Dog volunteer, but they were both lovely and so kind. I’d just been decrying my hatred of airport people’s insistence on putting blind folks in wheelchairs when we don’t need them, but I conceded to do it this time, because it would help Bill and me stick to together.
Remember the annoying guy who walked me off the plane when I got here? The one who was complaining about how heavy my backpack was (even though I offered to carry it) and whined about not getting any tips all day? I even tried to be funny and be like, “You should get a FitBit and give yourself a daily challenge! That might make it more fun!” and he was like, “No, I just want someone to buy me a FitBit as a tip.” Weak.
Well, the people Bill and I had were even worse! There were two of them, each pushing a chair, and they were sooo rude and ableist. They were complaining to each other about how much they hated their jobs, how to cheat the system so you can get sick days when you really just don’t feel like coming to work, how they want more tips, how their bosses were all trash, etc. They were even saying how much they hate having to help people with aisle chairs, which is SO unkind! Like, did they just think we couldn’t hear? And, again, I’m at their mercy, so I didn’t feel like I could confront them. The guy kept saying, “I’m not even trying to be offensive …” But bro, you ARE offensive! This whole conversation is offensive! I was just glad Bill and I have been dealing with this stuff forever, so we weren’t hurt or upset by their asshattery, but a person newer to blindness might really have been impacted, especially because it’s such a rude awakening coming from Leader to the airport and coming back to the real-world.
Oh, also, there was this gem:
Me: Could you all please keep an eye out for a family bathroom?
Girl (to Guy): Does she have to go to the bathroom?
What the heck?
Anyway, we shook them off at the gate (or, rather, they ditched out immediately as soon as we didn’t tip them), and we got great directions from some other guy (with a clockface! he knew his stuff!) to the security desk, and got seats together.
Now, Bill is very patiently sitting here while I frantically blog, and in between, we’re chatting about odds and ends. Also, Bill says to add that I forgot the peanut-butter sandwich Leader packed for me. I totally did forget it; it wouldn’t fit in my backpack. I was gonna carry it along, but then I forgot to snag it!
But now, I’ll go be a good neighbor and chat with Bill some more.
Squeeee, I will be reunited with my Martha and my Maíte soooo sooooon! I may never un-hug them! This was the longest I’VE left home, abandoning them behind me.
Thank you all SO MUCH for following along my journey. Here’s hoping I can continue blogging and don’t fall off the wagon again!
Remember to subscriiiiibe if you haven’t!
Image shows Caitlin and her O&M cohort – from about the knees down. In the front row are three pairs of tennis shoes, black, blue and purple and three white canes. In the back row are two more pairs of tennis shoes and two more white canes. The back left cane has a spherical tip, the back right has a marshmellow tip. Although the image doesn’t show their faces, I’m certain they all look proud and accomplished. 🙂
Total transparency: I love reading her posts, but I’d just as soon as she came home now. 🙂
When we were getting ready for Caitlin to leave, I was like, “I’m going to record a million videos!” To her credit she was not immediately irritated that I was blaming her for my lack of videos lately, instead she said something supportive like, “Oh, you like that!”
I am NOT blaming her for my lack of videos, but you know, since she’s on summer break, she’s…around! During the school year, I’m sitting in my office, doing my things, and if I have a break, I might doodle around and end up making a video. Or at least thinking about one. But when she’s on break, I’d rather come out and see what she’s up to. We like to eat lunch together, even though we eat very different meals. We like to walk the Maite together, or get in the hot tub. It’s not like I’m not working, or getting work done, but the very real space and energy that goes into writing/creating something isn’t happening. Even writing this and my other post – I think in part that is happening because she isn’t here. Which is a little sad but also worth knowing.
ANYway, y’all will not be surprised to learn that I did NOT, in fact, record a million videos. Or even one. A friend of mine predicted this, saying that when her family left 2 days before her on a trip, she also thought she would get a lot done. Instead, she spent her time sort of spacing out, wandering around the house (not the whole time, obviously). I was like, No, that won’t happen to me. Because I’m humble.
Then leaving choir rehearsal (which can I just say I was SOOOO tired after a migraine today and spending too much time in traffic, I still went because it’s so fun to sing with people again!) I really wanted to debrief with Caitlin. Only she wasn’t there. So I decided I’d send her a schedule-sent Signal when I got home. Then I pulled into the garage and checked to see if she had been online recently. I didn’t really expect it given the time difference and ALL THAT WORK she is doing, but I checked anyway. While I was checking, I momentarily forgot she was gone (I know, I know, that seems ludicrious, but I am telling the honest truth) and thought, I better get upstairs because she and Maite are waiting for me… then remembered that Caitlin is gone.
Yeah, I’m ready for her to be home.
Shout-out to my therapist for exhaustively reading this entire blog and making notes on all the reasons she’s proud of me, all the times she laughed, all the things she took the time to search up, and all the things we could talk about in future. She is truly the best, and I adore her and appreciate her beyond words.
Today for breakfast, I got a choco-chip muffin, and Jeffrey encouraged me (kindly) to try quinoa chocolate bark. Apparently, I tried this before, with Martha, on airplanes! But this one was homemade by the chef, and it was way tastier. It was a similar taste and texture to those chocolate / espresso coffee beans I used to snarf from Trader Joe’s: chocolatey and bitter and kinda … gritty. Shocking that I liked it, but I did!
Hannah had meetings, so Jeffrey and I did a quick route-plan, then reviewed and practiced a lot of the key take-aways from yesterday.
* I think I forgot to write yesterday that I’d somehow never really computed that we line ourselves up to cross along the inner curb because the traffic is closer to the outer curb. I mean, I guess I knew that … but not in those exact words. Necessarily. So you just listen to which side your traffic’s on, and then focus on the inner curb accordingly. MAGIC HACKS!
* This one took Jeffrey a couple tries to explain. When and if I veer while crossing a street, and my cane bumps a full curb on a left angle, that most likely means that, when I Go Go Gadget, the up-curb will be on my right, and vice versa. This may not always be true, but is a good place to start. We also talked about doing Go Go Gadget arm minimally at first, then extending farther on each side if I don’t immediately find something. If I go big first, I might miss the domes, since they’re often much closer than I think (IE, the veer is often not that big).
* Again, we practiced not moving my feet when I find the domes and using the traffic to check alignment on more simple crossing. For more complex crossings, I first line up with my shoulder lined up to the APS pole (we went from forearm to hand to shoulder because I am me and need Caitlin-specific choreography). Then, once I’m lined up with the pole, I use the traffic to confirm. This freaked me out a little because I’m usually not on the domes! I just have to trust the surge to guide me! I could also edge forward a LITTLE toward the domes, but carefully, so I don’t lose the magical position!
* Jeffrey reminded me again that it’s okay to wait until I get a parallel surge that I like. It’s okay to wait, take my time, and listen to one or more cycles to ascertain what’s going on and to make sure I’m lined up right.
* We also practiced using the traffic to get back on, or maintain, our line of travel. I always knew about this, but didn’t think as much about it in terms of avoiding sidewalk junk. Jeffrey pointed out that, typically, you get around sidewalk junk most safely by moving AWAY from the traffic. Maybe that should have been obvious, but, again, I just never thought about it that way.
* In terms of parallel surges, we talked about “The Golden Goose” surge, where the cars aren’t just tearing up to the intersection and passing through, but have been waiting for their turn, and are accelerating. This is complicated by the fact that (a) a lot of new cars idle very quietly, causing me to think no one is waiting and that they might be a new arrival, rather than an accelerator, and (b) in busy intersections or areas with lots of noise, it can be hard (for me, anyway) to differentiate.
* Funny moment:
Me: This car’s waiting for me, huh? But I want my all-quiet, all-clear.
Jeffrey: Right. What can you do to encourage him to move on? (Without thinking, I whirled around and pulled up my cane, acting like I was going to leave.)
Jeffrey: Ahh, don’t move those feet!
Me: Ahhh, I forgot!
Jeffrey: Look down or look away, but don’t move those feet.
Me: Should I look, you know, in the opposite direction? Or in their direction, so they know that I know they’re there?
Jeffrey: I think “nose to ground” is a good reminder.
After our water break back at the downtown lounge, we spent some more time with the Wheatley boards. Those are the big felt-covered boards with plastic strips for streets, blocks for intersections, little squares with bumps for truncated domes, little cars and people, etc. These can be velcroed in whatever place you want, to build intersections, simulate crossings and movement of pedestrians and cars, etc. It really seems like an art form to me when these instructors just built complex intersections in a trice.
We did a review of complex lighted intersections. Like with yesterday, Jeffrey took the time to explain things like lanes, different scenarios, being careful about cars that might turn unexpectedly and what can be done, etc.
We then did a quick walk to a complex intersection. It sounded SO wild, but Jeffrey made it clear that we were just going to listen, not cross. He wanted me to be able to hear it in person after we’d simulated and discussed it with the board. Hannah was also able to join us on this leg of the journey, which was great, because she and Jeffrey often tag-team and riff off each other with extra tips, ideas, suggestions, and noticings.
After lunch, we went to the mall, because I’d asked for techniques for the mall, stores, etc.
Best line:
Jeffrey (as Hannah cranks some music): Is this that song y’all were singing earlier? “Lifestyle Of Evan Williams?”
Me: Ahahahahahaha!
Jeffrey: Something about … Dean Williams?
Hannah: “Dear Evan Hansen.”
Jeffrey: Oh, is that what it was?
Me: My dad calls it “Dear Evan Handsome,” if that helps.
In the mall, we talked about using sounds as markers, which sounds like a good idea until you think about all the competing sounds in malls: fountains, mall music, people talking, echoes, music coming from individual stores, etc. Now that I look at it, that list actually doesn’t seem that intense, but it all adds up and becomes a lot. We practiced escalators and went up to Nordstroms. I was going to try soliciting verbal directions to the bathroom from a salesperson, but some customer who reminded me uncannily of my mom was taking forever and a day at the counter.
Me: Can you just pretend to be a stranger and I’ll practice with you?
Jeffrey (turning into his alter-ego, Joffrey The Boy King from Game of Thrones, which he’d told me about): Helloooo, madam, can I … (sketchily) help you?
Hannah (amused): Oh, no …
Me (trying to stay in Caitlin character): Can you please give me verbal directions to the women’s bathroom?
Joffrey (sinisterly): Yes. I’d loooove to. (breaking character) Okay, no, that got creepy.
Me: Ahahaha it was great.
Jeffrey: Okay, Joffrey’s gone, I’m back.
Hannah and I also practiced bathroom tips, but their Nordstroms bathroom was waaaay more straightforward and chill than ours. Still, good notes: try to stick with one wall at a time (not just flail around and go in wild circles, like I frequently do, in search of the stalls); trail the walls with the back of a hand; be mindful that sinks may stick out; etc.
Jeffrey also showed me one of those enormous marbles that rolls around and around in water. I can’t explain it now, but Martha showed me one at the county fair. They’re so wild!
We also talked about how malls seem totally, ridiculously insurmountable to me, but I could pick out a couple of stores and plan a route beforehand. And because they are cool, Hannah and Jeffry reiterated that human guide is a tool in my toolbox! So if I want to do that — if that makes the most sense, like if I just want to browse a mall and not get hung up on every single piece of mall junk — that’s an option.
Hannah also noted that many malls open before the actual stores open, and that would be an ideal time to practice, map out routes, etc., like when I used to practice my routes for school in the summer, or after school. Much easier to learn the route without people swarming everywhere.
On the drives to and from, we talked about odds and ends, from why I became a SpEd teacher, to my attempts to find something noise-canceling that doesn’t make my hearing feel weirdly occluded, to their experiences doing extensive training under blindfold. One of the ladies in our cohort also did a route with a blindfold and poignantly said to me, “I have so much respect for you, Caitlin, because my blindfold comes off, and yours doesn’t.” My “best straight guy friend,” Mitch, from college, said something similar after he did a Dining In The Dark-type simulation, and it really just warms my heart when people empathize in that way. I know people have big feelings about simulations, but when they’re paired with training, education, and-or exposure, as in these cases, I really do think they have their place, teaching empathy but not pity.
I was going to take a nap, but one of our crew texted our thread and told us there was ice cream in the piano lounge, and another told me there was an Oreo-type thing that I’d probably like … and she was right! At dinner, Jeffrey delivered my mail: a brailled letter from Martha (and Maite). Soooo cuuuute! I may or may not have gushed and bragged a bit about how sweet and brilliant she is. Everyone was properly touched.
We had fun chats about favorite desserts and adventures of the day, and I told the group that I, very suddenly, felt a huge influx of big feelings about leaving. I was a wreck after leaving guide dog school because I’d bonded so much with the cohort. And when I left LA after the “Dreaming In Color” summer, I was more sad than I think I’ve ever been in my life. For weeks! I cited that it’s not just about leaving the people and the, like, vibes, which is hard enough; it’s also about leaving a world that feels built for us, where blindness and visual impairment is normal, where we’re understood, respected, and treated well. It can feel very hard to leave that, especially when there are stressors at home, and when you feel some anxiety about preserving and keeping up what you’ve learned, as with guide dog school, but this time on your own (until you teach your people the things you learned, so they can support). The crew, of course, got this.
I forgot to mention that I tried the jumbo roller cane tip today and liked it as a lighter option. It doesn’t hop over cracks like the Pathfinder and Sensaball, but it does pretty well and is much lighter. I bought one at the RA office so I have it as an option.
I also did my best to take pics of the braille rails, wall of snacks (with its braille labels), and fridge (with the braille labels on its shelves) for my therapist. We’ll see how I did.
And, as ever, I’m zonking out! Only one more day … nooooo! I feel like I’ve been here forever!
Image shows a bird’s eye view of a white painted hand rail with a “bump dot” screwed into it. Underneath it, on the floor, is a dark blue line running parallel to the wall, very visible against the white floor. Presumably for folks with some vision can use it. Unless it’s for the guide dogs? Next in the picture are Caitlin’s two feet, in their special, ankle-saving shoes and pride socks. Next to her right foot is her cane – the bottom section is red and it has a cane tip I don’t recognize on it. It’s red and white but I don’t think it’s the Sensaball. I’m doing my best, people. Caitlin is long abed and I’m posting this after choir practice. Which was awesome.
Jeffrey and I wanted to poll the sighties:
QUESTION: IF there were no streetlights, pedestrian heads, etc., would you know how to cross the street? In other words, do you actually understand how traffic works and when is the most optimal time to cross? Jeffrey thinks that, actually, very few sighted folks would cross the street particularly safely or optimally without the “ped heads,” as he and Hannah call them.
After breakfast (bacon and toast for me, nomnom), we did more street crossings. I wrote out some routes and mapped them out on the mobility velcro tactile board thing. The board is confusing, but I comprehended enough to follow my own directions with very little help, which is more than what usually happens!
I also tried flagging straight up and down instead of side to side, which was a little easier, less choreography-like, and saved me some time. Time is worth its weight in gold when you’re trying to cross a street.
I did get a LOT better about planting my feet when I don’t cross perfectly straight. This way, I don’t run the risk of running in the wrong direction of the up-curb and spending more time in the street; rather, I plant my feet, do a Go Go Gadget sweep to either side, and inevitably find the curb.
At the end of the first half of the morning, I crossed a street (an easy one) in front of some Leader Dog volunteers who, I think, were there for Distraction Wednesday, waiting to squeeze squeaky toys and distract the guide dogs so they could practice ignoring temptation. But there were no dogs around, so they were just chatting, and when I got across the street, they cheered very extravagantly. I felt kind of silly about it, because it was what Derek and I call a “baby street,” and I was crossing on an “all quiet, all clear,” and everything like that, but it was still cute.
I’ve also gotten Jeffrey into the habit of doing “up top” and “down low,” which seems to amuse him. I also definitely did a happy dance at one point yesterday and Jeffrey was like, “Um … step a little more forward so you don’t accidentally dance into the street.” Heh.
For the second chunk, we headed toward one of the much more complex crossings. I also practiced listening for, and paying attention to find clues that would help me avoid mixing up driveways and intersections with weak curb-cuts, no truncated domes, etc. I was also especially careful on my “all quiet, all clears,” because I totally missed an approaching car during one and was horrified, even though Jeffrey and Hannah insisted that it had not been a dangerous error. Of course I totally know they won’t let me die, but … when even a simple crossing seems fraught, I start having these existential thoughts of, like, “Why do blind people even cross streets independently when we could literally die?” I know, I know, I can’t say stuff like that or my Blind Pride Card will get taken away. And I know sighties can get hit, too. But it’s just where my mind goes when I do mobility. It can all start to feel so complicated and exhausting, which can feel unfair because sighties don’t have to worry about any of it, and then it can put me in a frustrated, stressed-out, angsty headspace.
The big crossing had an audible signal that gave hecka directions: the name of the intersection, the cardinal direction, a countdown as you cross, etc. It was also set up in such a way that I could press my hand parallel to the sign and use that as a backup tip for getting myself aligned. Because I am me, the choreography of doing that was difficult, because it seems most folks use their forearm, but I couldn’t coordinate that without standing way far away and torquing my body oddly. The flat-hand, and a reminder to stand closer to the sign, not closer to the domes, helped.
With the APS and the parallel surge, most of the crossings went fine once I was used to it. Still, I haven’t crossed a street like that without a guide in years. I’m not ashamed to admit it. (Okay, yes, I’m totally ashamed to admit it, but I oughtn’t to be, because whatever.)
Some Big Crossing things:
* The APS might indicate that it’s safe to cross, and it technically is. But we still want a strong parallel surge, where the traffic has been waiting and has JUST accelerated. My favorite thing about the parallel surge is that, essentially, you can follow it across the street … like a guide! But also, besides following it to the other side, you can use it to help you maintain your line of travel. So you can’t just (cough) blindly follow the APS (yes, Jeffrey and I made that pun … or joke … or whatever we wanna call that).
* What I love about the surges (that they guide you) is also tricky, though, because, obviously, you also can’t get too close to them. But you have to be careful not to get too far away, because then you’ll go into traffic. It’s a delicate balance. That I’m not used to. So you can’t let the cars get any closer to you than they are when you start off from the curb, but you also can’t flip out if you discover they ARE too close to you, because then you’ll get annihilated by the other cars.
* I think I was also getting hung up on the feeling that my feet really needed to be in the precise right position when I aligned myself to cross. Which, I mean, they do … but I just needed some reminders that I can let a cycle or two go by, listen to the parallel traffic, and adjust my alignment as necessary. I think I’ve internalized the sense that waiting a few cycles is, you know, weak and shameful and indicative of garbage mobility skills.
* Hannah taught me a life-hack when I complained that the audible signal poles in SF are often literally, like, five feet away from the curb-cut. If you wait for the perpendicular traffic to go, “run” to the APS (Audible Pedestrian Signal), press it, and come back, you’ll have the maximum amount of time to get yourself re-set up to cross. So after all this, and to some extent during it, I was feeling low-key toasty / tearful / stressed out. Jeffrey and Hannah were great and reminded me to “shake it off,” which is totally a thing Martha and I often cite. Dogs do it for a reason! It literally enables you to complete the stress cycle. Also, if either of them had, you know, even asked, “Are you doing okay?”, I probably would have cried, so I was super grateful that they followed my lead and just kept rolling. I’m one of those people who just disintegrates at the first expression of comfort and sympathy in the face of impending tears, haha. And I despise crying in front of people. After a few crossings, and a lot of encouragement, Jeffrey, because he now knows me from sitting at our dining-room table three times a day, said he was going to buy me ice cream. So kind.
Again, the way the Leader Dog crew do not default to guiding continues to surprise me, which only reinforces to me how accustomed I’ve become to being guided out in the world. They still managed to give me a break by giving me verbal directions to the ice cream place right behind our crossing, but I was still walking solo. As it happened, Hannah told me that the shop had a mini chocolate-chocolate cupcake, which was absolutely perfect. And I think it speaks to Jeffrey’s and Hannah’s bossness that (a) they freaking got me a cupcake, and (b) I was actually able to eat and enjoy it, even after all that stress. Believe me, that’s not always the case, even if I’m given a perfect chocolate thing!
Jeffrey wants to eventually do mobility with kids, and I told him that, if he keeps doing kind things like taking people to get cupcakes and ice cream, he will be perfect at it. I commented that I could have been so easily bought and motivated by going to pizza, ice cream, whatever … but, often, the stringent rules around where mobility teachers could take me meant that we couldn’t do much that was relevant. So of course I didn’t get as much out of lessons as I could have, especially in later years, when the rules became stricter and my abhorrence of mobility got more intense.
Ooh, the last thing I learned in the morning was that it’s best practice to have my cane proceed me as I exit a door. I guess I always kind of felt like, “Well, I already came in, so if that went fine, then the exit will go fine.” But, especially in SF, anything can happen on sidewalks. Or there could be a step which I forget about because something ridonc happened while I was inside the building. You never know!
After lunch, doubtless deducing that I was a little fried, we went to the beach and I got to try the Dakota disc cane tip. I always assumed it would be more like a wheel standing on its end, but it’s actually more like a baby frisbee, and it bounces over sand, snow, and grass really nicely. I super-liked it. My SensaBall and PathFinder tips do okay, but because they’re more like suitcase wheels, they have a harder time than a disc on those textures. When I hit the sand with the Dakota disc, it felt so deliciously swishy in the sand that I ran down the beach. Jeffrey and Hannah were sweet and let me, although Jeffrey pointed out later that, really, for safety, unless a sightie’s around to ensure that there are no giant holes, sand castles, or picnic spreads, my reaction time would not be good, so it’s not ideal to go running blithely all over the beach. But they let me, because they are kind. Although Jeffrey did tease that, if I accidentally ran into the water, he wasn’t going to stop me. But obviously I didn’t … even though the water sounded more like a splashy little puddle than the ocean, which was new for me.
Hannah and I also talked a little about bathrooms, because I cited them as another stressor, especially since I have bathroom anxiety, try to put off going because I hate asking for help, and then am often in a panic and need to go fast, especially when I’m not with someone who’s able to go into the same bathroom as I am, or when there’s not a single-stall bathroom available (I know there’s a better word for that kind, but I can’t think of it … the ones that don’t have stalls!). Hannah said we can practice in the Leader Dog’s lobby bathroom tomorrow, and that she always reminds clients to try sticking with the walls rather than wandering through the middle, trailing with the back of your hand because EW, and also remembering that the accessible stalls have doors that go inward and tend to be on either end of the lineup. I tend not to use the accessible stalls anyway, because I don’t need them and a wheelchair or guide dog user might, and also because it’s just one more giant open space to navigate.
We also walked on a trail, where I liked the jumbo roller tip; it’s lightweight and did well in the dirt and hopping away from the grasslines. It didn’t do quite as well as the Sensaball or Pathfinder, but its lighter weight means that it and wrist, and would be less tiring on a hike. Same with the Dakota Disc. But the Dakota Disc is hollow, so if it gets punctured by something sharp, it will die. It also isn’t meant for everyday use, unless you’re in the snow, and it’s not meant to go on concrete. It’s hook-style, though, so is very easy to swap in and out as needed.
As we drove back, we had a good, honest talk about taking an arm versus trying to walk by myself. Let me add that I brought this up willingly, which I have hitherto never done with a mobility teacher because, you know, I worry they might spontaneously combust when I ask why anyone would bother using their cane when they could walk with a guide, other than to prove that they can? I mean, it wrecks conversations, slows your companions down, trips people, makes people stare, causes random sighties to freak out and grab you and scream if your cane touches anything, etc. But after this week, I genuinely feel like I do want to do a little more walking solo out in the world with other people … because I can. And because a guide isn’t truly, always necessary … it’s just easier. But walking solo also feels … empowering. In a way. Sometimes. I don’t know. I’m unpacking it.
Both assured me that whether I go solo or with a guide is ultimately my choice and can be based on the situation. We talked about how certain family and friends might be better at working on this with me (IE, people who can and will glare at other people who look like they want to interfere, who will be patient and interested in the process, who can strike that balance between helping and standing back, etc.). Jeffrey also pointed out that, now that I’ve refreshed my technique, and my arc has improved so drastically (he repeatedly commented that I hadn’t needed a prompt and was doing well), solo travel might feel less cumbersome.
Speed-through of the rest of the night: we had a tour of the Canine Center and the gift shop. I asked for all the braille things, and the gift shop people were excited because they said they don’t get a ton of people who are into Braille. I brazenly informed them that I’m the biggest braille fan in the world. Because I have no shame. Or modesty.
The canine center was really interesting and we learned a ton of factoids, most notably that (if I remember right) it takes less than three freaking months for puppies to gestate and be born. I could not! What in the world? How!?
My Dark Oreos came, and I gave people samples, including Craig from the kitchen, who made me another fake-chocolate sundae, into which I crumbled my Oreos. Delish.
Then we had a little lecture (optional) about Meta Glasses and Be My Eyes. I thought it would be more about using them for mobility, because I know people do, but none of the other folks seemed very familiar with either service, so it was mostly just introductory stuff. It was super cute to hear their amazement, though. And, as our presenter pointed out, Meta and BME can be a tool in the mobility toolbox, but ought to be primarily a confirmation, not a guide, because they’re unreliable, can hallucinate, glitch, etc.
I promised Jeffrey I wouldn’t stay up late blogging because I was sooo tired this morning (he was amused that he was advising a teacher, of all people, not to stay up late). Off to bed I go, so I can get my eight hours. Sweet dreamzzzz and more tomorrow, if I can stay on sched!
PS. I’m not editing these posts at all, so sorry (not sorry).
I don’t know about y’all, but I love reading these posts. Many of you probably know that in the very beginning of our friendship, Caitlin and I did a LOT of writing together. We met at a school we were both working at and as summer began, we decided to start our own writing group, just the two of us. We agreed we would write for 10 minutes every day, and send that writing via email to one another. I looked forward to reading her words every day. Sometimes we’d exchange emails beyond that, usually related to what one of us had written. After a while I asked, “Do you do texting?” which now seems hilarious to me, knowing how very much Caitlin texts, and also because it NOW feels like, doesn’t everyone text?
And of course she said, “Yes, absolutely,” and the texting began. We texted so many, many times a day. I used to use an app that allowed me to download my texts and seriously there were thousands of texts before we even began officially “dating” or whatever you want to call it. Speaking for myself, all those words were a real part of falling in love.
We moved in together when the shelter-in-place started in California (thinking it was going to be ‘just a few weeks’) and the texting mostly stopped. I mean, we did still sometimes text each other from the other room when we were each online, working. Sometimes texts were like, What is going on in there?! or Would you please get the dog out of my area?
Fast forward to today and living together means that most of our communication these days is spoken (unless I’m out of town). There are still SO MANY WORDS. We talk a lot! We both have things to say and of course, Maite has plenty she wants to say, too.
And we still write together, although nowadays at the end of a writing sprint, I usually read what I wrote aloud and Caitlin usually makes me wait till the piece she is working on is done. Which means I get to read a lot fewer words on a regular basis, so reading these along with y’all is a real treat for me. I love her turn of phrase and have laughed out loud for real with each of these posts. I love to read what’s going on in her mind in conversations. (I miss those FB posts about things her students said to her!) And I am glad to read about how it’s going out there as she does her thing in a completely unknown place. Bonus points to the person who added those Oreos to her ice cream.
I forgot to mention the tragedy of yesterday! Sighties who know me will attest that I am always wearing my Braille notetaker in a cross-body fashion. Alongside that, I have a little side-bag, which holds all the things that a purse would hold if I had one: ID card, credit card, money, lip balm, antibacterial, thumb drive, etc. As iPhones have gotten bigger and bigger, I’ve also stowed my phone in the pouch on the front of this side-bag. Hilariously, the types of little side-bags that work best from me are usually meant for camera accessories! But now, because I need to hold my cane on my right side, closer to my body, guess what’s in the way? The freaking side-bag. And I don’t want to have to wear a little backpack or purse or cross-body bag all the time, because, between Braille notetaker and cane, I already feel encumbered enough as it is. Ugh. So I have no clue what I’m going to even do with my whole life and aesthetic.
And the other part of the tragedy is that, for now, I think the rhinestones on my cane made it slightly heavier. The Sensaball and Pathfinder tips, which I adore, also make my canes heavier. So now that I need to rewire my wrist and forearm muscles to accommodate holding the cane closer to my body and higher up on its handle, the cane feels heavier and harder to control. I’m using a plain cane for now, and hoping I can build up my muscles enough to go back to a bling cane. Because what will my aesthetic even BE if I can’t have a tricked-out cane of glitter and rainbow explosion and vibes!? Hashtag devastation!
Anyway, I’ll figure all that out in good time … on to today!
Most folks had some fancy-ish breakfast, but I got two buttered toasts (yes, Derek, I know toast is not a countable noun, in case you’re reading), and a sausage patty. Hannah, Jeffrey and I got to take a shiny new van downtown, complete with that delicious new-car smell.
Jeffrey (mock-appalled): What’s that left hand doing?
Me: Um … getting into the car?
Jeffrey: Remember to anchor!
Me (genuinely appalled): What if I hit the new van!? I cannot!
Hannah: It’s totally fine to hit the van.
Me: … … … Nooo!
Again, I’ll do highlights, avoiding some of the most mobilityish mobility stuff.
* We worked on several intersections, including a crooked T, and practiced waiting for the all-quiet, all-clear and listening for near parallel traffic. I was introduced to the concept of “blocker cars” and “musher cars,” as a means of differentiating which cars “block” you from oncoming traffic, and which cars could “mush” you to death.
* There’s this thing that frightened sinsist on you crossing the street, even if you’re trying to listen to the traffic and don’t want to cross at this moment. This can look like honking, shouting, or just … silently lurking. Forever.
The three of shooing drivers away:
1. Lowering your head slightly
2. Looking away
3. Walking back the way you came and realigning yourself, simultaneously signaling to the sightie that you don’t intend to cross
Me (as a clarifying question, which I stated rather than asked): So we aren’t waving people on anymore.
Jeffrey (with a tone that suggests he’s quizzing me): Why?
Me (flustered): I don’t know, it was a question.
Jeffrey: No, you’re right, I’m asking you why we don’t wave people on.
Me: Because … if they die, they’ll sue us?
Jeffrey: Correct. Generally, I’m not comfortable with blind people directing traffic.
Me: Seems reasonable.
* I have a distinct memory, when I was practicing my route to audition for guide dog school, of Mr. C yelling, “P! A! T,” which stood for Protective Arm Technique. Now, we call that Upper-Hand And Forearm.
Jeffrey: Nice job with upper-hand and forearm right there!
Me: Oh, I … I didn’t even really do it, I just kind of … put my arm out.
Jeffrey: It was about halfway there.
Me (aggressively trying to do it correctly): Like this!?
Jeffrey: A little higher … protect the moneymaker. — Moneymaker meaning … your face. Clearly.
* I think I had a bit of a breakthrough with cut-backs, but just now, when I tried to write it, I don’t quite know how to explain. Heh. I’m sure we’ll work on it more.
* We worked on some problem-solving in the field:
Me: The sidewalk here has, like, come to a dead-end. Of death.
Jeffrey: So what can we do?
Me: I don’t know? Turn around?
Jeffrey: Have you ever seen Anchor Man?
Me: … … ” No?
Jeffrey: They put question marks on his teleprompter, so he reads everything like questions, even his own name.
Me: Ahahaha, that’s totally what I do.
Jeffrey: Even if you’re not sure you’re right, you can state it like it’s true.
Me: I’ll try!
Later, after Jeffrey gave me a clue, and I got around the dead-end by climbing a staircase:
Hannah: You’re on a boulevard now.
Jeffrey: What was that reason we learned for why it’s called a boulevard?
Hannah: It has more trees … and businesses.
Me: I never knew that.
Hannah: We didn’t, either; we had to look it up.
Me: Ooh, truncated domes! Wait, am I lined up right?
Jeffrey: Ahhh, don’t move those feet! That’s the number-one rule!
Me: I thought that was just for … other things? … Questionmark? Anchor Man?
Jeffrey: Ahahahaha nice.
* It will surprise very few of you to know that, at the precise moment something unforeseen (cough) happens on a route, I do not, in fact, plant my feet. Ever. I do the opposite … namely, lashing out with cane and free arm and free hand to figure out what in the heck is going on, and swinging around wildly all over the place. Jeffrey impressed upon me that, of course, the more I move, the more off-course I’m likely to get. And it was true that, often, I was either still totally fine and following my line of travel, or just a touch off-course, which would be easily corrected if I could just, you know, find some chill.
My other temptation, for some reason, is to grab the cane in a double-handed vise-grip, I think because I subconsciously think that gives me more reach and control. If I don’t do that, the left hand’s flailing around to ascertain information. But by the end of the day, I shocked even myself with my ability to just stop, take a minute to think, and then either search more calmly for landmarks or clues, or simply to do some narrow sweeping to see if I can hop back on to the correct line of travel.
* Hannah and Jeffrey both normalized that it’s totally okay to ask someone for help crossing a street, and also pointed out that, often, if there’s a business nearby and it’s a route you travel often, you can solicit help from employees who may start to know you. Martha also had this idea in the neighborhood, but it hasn’t worked out … yet. But I loved the reminder!
* It’s also very strange-feeling to be learning mobility in a calmer, more residential area. I’ve been in SF so much, and had so little mobility training there, that I just … forgot that calmer streets existed, that some sidewalks aren’t rife with hazards and sidewalk junk, and that I actually do remember a lot of mobility things. They just aren’t as applicable in the city, which is a whole different beast. This part of Michigan is much more like my hometown in its characteristics, so I feel much less out of my element here, even with the larger crossings (which we didn’t get to until the afternoon).
* There’s a balance I had trouble striking. Sometimes in the world, there’s not a well-defined curb-cut, much less truncated domes. But also, in the world, there are driveways. So often, when I’m trying to follow a line of travel along a sidewalk, and I pass a driveway, especially if there’s a change in the texture of the pavement, which there often is, and especially if there’s a lot of noise or no noise, I’m freaking out, thinking I’m wandering blithely into the street. This is, of course, where listening to the traffic in the street alongside me comes into play, as well as tapping into other landmarks. I still often catch myself stopping too soon, trying to analyze, and subsequently losing my line of travel … or, if it really is a flare leading to the street, misaligning myself. So we’ve been practicing this.
* And might I remind you that, in addition to these things, I’m trying to remember to keep my arc narrow, to relax my wrist and arm and shoulders, and to not choke up on my cane? Although Jeffrey did say that my arc and my grip were great today, so it’s already sticking … but it’s still on my mind, even as I try to catalog these other things. Luckily, Jeffrey and Hannah get this … and also applaud me for taking copious notes, rather than thinking I’m ridonculous.
* Joy Explosion: We ran into a guy walking two retired Leader Dogs, and he let me pet them. OMG, I literally fell to my knees and gave one of them a full-on hug. And she was all wet, too, because presumably they’d been playing in the sprinklers, but I had zero cares about that. I miiiiiss Maíte-hugs! The day was also super humid, with only occasional breezes, and between the heavy air and, probably, my mega-focus and intensity, I was SO sweaty! Seriously, I’m typically not a sweaty person unless it’s, like, ninety degrees, but my whole entire forehead was drenched, soaking my bangs, and I could feel sweat running down my spine, which I haven’t felt to this extent since I was in sixth grade and trying (and failing spectacularly) to do Track and Field in freaking June! All of this would have been fine, except I was starting to get a blister on my thumb from strangling my cane in the new way I’m working on holding it. And that blister was also probz from sweating so much. As Maite, voiced by Martha and me, would say, “That’s asgusting!”
Hannah and Jeffrey are like Scouts, though, and had a whole first-aid kit. Hannah bandaged my finger to cover the blister, but I was SO sweaty that the Band-Aid literally just … peeled off. Hannah also said they have tennis tape, like what’s used in the mainstream world for racket handles, and that that might help me get a better grip. (They also had canes with alternative handles, but none were short enough for me, heh.) This gave me funny flashbacks to guide dog school; the harnesses with the more ergonomic, detachable handles had just come out, and I was the first (and I think only) one in our class to get one before they were officially given out, because my freaking hand was so small that the standard harness was hurting it. This caused so much gentle mockery from my classmates … as seems only fair.
By that point in the morning, I was having a hard time keeping a narrow arc because controlling the cane with minimal thumb action was getting harder. It was about time to leave anyway, and Jeffrey and Hannah impressed upon me that taking care of this situation now equated protecting the rest of the week, which I appreciated.
Once we got back to campus, I went to the RA’S office, and they bandaged me up more intensely, with some elaborate criss-cross doctor way of securing the larger Band-Aid. And they helped me get a yellow Gatorade, because NECESSARY! I felt a little fried after that, but I amped up again after getting a grilled cheese for lunch (and found out that Jeffrey eats very similarly to me, which is boss), and (even more thrilling) Jeffrey giving me the choice of what color tennis tape I wanted to wrap my handle in. Cane bling seriously always makes my life. I chose purple … obvi.
I’m getting tired, so just a few highlights from the afternoon that might be interesting to you people:
* When I’ve learned routes, I’ve literally written things in my notes like, “Stand with left foot two inches from the upper-left corner of the truncated domes for optimal crossing.” This way, I don’t have to worry that I’m lined up correctly to cross … at least, not as much. What I didn’t know is that I can hit the domes, plant my feet (the number-one rule), and then use my Go Go Gadget right arm to find the inner curbs on either side, to help me line up. (I mean, maybe I was taught this, but either I forgot, and-or we didn’t do it precisely this way.) But it made lining up feel so much more methodical and so much less like guesswork and praying to the mobility guru above.
* We did a ton of work with those mobility kit things with the velcroed, plastic intersections and blocks and people (I forget what the kit is called). I always despised those so much as a kid and, sure enough, it took a good forty-five minutes for what Jeffrey was explaining with the materials to make sense, but by the end, they clicked! Sort of. As Jeffrey put it, “We’ll see if it’s still there in the morning.”
I explained that it’s always just been so, so hard for me, almost impossible-feeling, to (a) imagine an entire street layout, complete with all the lanes and curbs and intersecting streets and on and on, and then (b) hold that in my mind long enough to figure out what the heck I’m supposed to do with it to get to some elusive destination off in the distance. Jeffrey genuinely seemed to get this. It was nice feeling like I could say this and have it understood and believed, rather than feeling like I was just making excuses. Not that any other mobility teachers ever made me feel that way … I think I just make MYSELF feel that way. So the validation was appreciated.
* Oh, also, in the morning (because I’m running out of sufficient steam to scroll up), we were going to practice veering, but then (of course) I stopped veering. Hilarious. But, oddly, if I flag a certain way (almost, like, with Caitlin choreography), I go straight … and if I flub that, I veer. Interesting.
The rest is just mobility stuff that I’m too tired to write about and which probably isn’t interesting to the vast majority of you. But also, Jeffrey very kindly offered to hold my cane for me when a siren came so I could cover my ears, aww! He can stay.
Then, our crew had a meeting with the Leader Dog counselor, who also talked with me before class re: anxiety and ARFID. She was lovely, and I felt like our cohort became immediately closer after just sharing that single, vulnerable hour.
I took a shower (seriously, I’ll probably have to shower every day once lessons are done), and then we had a really fun, raucous dinner. I feel like everyone’s personalities are really coming out more, and there’s a lot of laughing, teasing, and sharing, both the hard and the silly. This was a staple of guide dog school, too, and it’s so sweet and singular.
Also, shout-out to one of the kitchen staff, Craig. First of all, at lunch, when I asked him to please refill my thermos, he also cleaned it for me, so thoroughly that I could smell that delicious whisper of bleach. Not like, you know, there was bleach in it! Just like … someone had done a boss job actually cleaning it, rather than just rinsing it, like I often do when I’m in a hurry. And like I certainly would do if I had, like, thirty freaking blind people asking for thirty different things in my dining room.
THEN, tonight, everyone got some fancy sausage thing with trifle for dessert, but I heard Craig telling someone else they could have vanilla ice cream. I have been longing soooo desperately for ice cream since I got here!
So it went like this:
Craig: Caitlin, would you like trifle?
Me: No, thanks, but … did I hear that you have ice cream?
Craig: Yes, I can make you a sundae with vanilla and chocolate syrup.
Me: No chocolate?
Craig: No, sorry.
Me: Okay, but can you please put so much chocolate syrup in the vanilla that it, you know, forgets it was ever vanilla?
Craig (laughing): Yes, absolutely, I totally get you!
(As Craig leaves ) Me (to the table): Dang, too bad the volunteer who’s getting groceries comes tomorrow! If I had my dark-chocolate Oreos, this would be perfect.
(Five minutes later, Craig returns, gives sundaes to each of the two folks sitting on either side of me, and…)
Craig: Caitlin, I put LOTS of chocolate syrup, and there were some mini Oreos left over from Kids Camp, so I put those on top for you.
Me: Oh … my … God, thank you! Seriously I cannot thank you enough right now, I might cry, I want to hug you!
The table, of course, was amused … but I was so serious! It’s the little things! It really is! He didn’t have to do all that! Also, it was delicious.
Then my Leader Dog mentor called to check on me, and one of our cohort, who was mourning the scratchy toilet paper alongside me, brought me a roll of soft TP from a pack the RA had given her. Everyone is seriously so kind.
Okay, I am soooo tired and meant to be in bed like … an hour ago. Hugs and rainbow joy to all, and more laterz.
Let me just say right now what a fantabulous job the kitchen is doing with my ARFID. Like, seriously, I have never been catered to (pun intended) so thoroughly (a) without either someone else or myself having to do a boat-load of extraneous advocacy, and-or (b) without feeling like I’m a huge, babyish burden.
Between the jet-lag, nerve-citedness, and my inability to sleep on any pillow ever besides my own (I really should invest in a travel pillow, but I bet that wouldn’t work right either), I wasn’t too hungry for breakfast. The sausages were delicious, though, and I already requested milk and water for every meal. It just so happens that I’ve felt a little sluggish in my body of late, and because soda is an easy scapegoat, I have blamed him and am divorcing him forthwith, at least for the time being. Just when there’s a shelf literally Braille-labeled “Pepsi” in the RA’s office, calling to me. Anyway, the kitchen staff also checked in with me, knew all about my safe foods (I sent them a list, but I often do that and people just willfully disregard it or think I’m exaggerating), and basically said they’d give me Caitlin-food substitutions (IE, plain chicken, burgers, peanut-butter-no-jelly sandwiches, etc.) in place of the fancy things I won’t eat, which is pretty much every meal here, because guide dog schools, like I said, are basically akin to resorts … and are also way better than the literal cruise I went on last year, which had me subsisting on milk, salami and cheese slices, and soft-serve from one floor and Oreo crumbs Martha spirited from a whole different place on the ship.
I also continue to love the Braille Rails, as I call them. Just having those bump-dots and all the Braille labels as reference points is so cool.
After breakfast, we got buddied up with our 1:1 instructors, but because I am a lucky duck, I get TWO instructors: Jeffrey, who’s an intern (he’s almost done!) and Hannah, who my friend, Alexis told me was awesome! They were both incredibly sweet, understanding, and hilarious from the get-go, which quickly put me at ease. I mentioned my anxiety around mobility, and all of my “anti-goals,” as I call them: dropoffs, instructors following you silently, etc. Jeffrey was very clear that I’ll have a say in everything we do, AND he added that a dropoff at the end of the week might be a good confidence-builder IF I decide I want to do it. That thought, of course, is beyond horrifying right now, but I shall not pass judgment until I get to Friday … or I guess Thursday.
I also talked about my general feeling, whenever I do solo mobility, that I’m in the way, slowing people down, appearing clumsy and incompetent, etc., and that I struggle with advocating for my own bodily autonomy in the face of a stranger or a frenetic situation. It was really nice to air these grievances and feel truly understood and respected.
I also mentioned that I have no idea if my cane technique is ideal, or even if my cane’s length was ideal, so we started out using a few different canes. We settled on one that, I think, is slightly longer than the one I brought, which I remembered later is my shortest one. I got a shorter one to accommodate my love for the Pathfinder and Sensaball tips, which are free-wheeling and, as I once said to a friend, “bounce over cracks with tremendous alacrity.” I love these tips, but they increase both the weight and length of the cane. AND, as it develops, I’m very tense in the way I hold my cane. Hannah had me laughing when she called it a “dinosaur arm,” and Jeffrey cited “Go, go, gadget.” This is why we all vibed.
Some fun news is that I nailed stairs, and that, actually, aside from my needing to choke up less on the cane handle and work on narrowing my arc, my cane technique is not rusty enough to give me tetanus. Considering that I haven’t had consistent O&M (I literally just wrote M&M, oops) since I was eighteen, and from sixteen to eighteen was with a guide dog, not a cane, I’m actually surprised I don’t have more egregiously bad habits than I do.
My arc has been an issue ever since I can remember. Teachers used to tease that it looked like I was clearing the way for ten people. I’ve gotten better at keeping it within my shoulders, but it still sometimes goes a little far to the side. This is a problem because, for example, if your cane’s way off to the left and straggling its way back to the right, something might hit me on my right side while the cane’s trying to catch up. So if the arc’s narrower, it has less ground to cover and will keep me safer in my little bubble.
The tricky part is that, between narrowing the arc, needing to relax my wrist and elbow while holding the cane closer to my body, and holding the cane closer to its top rather than further down the handle, my arm and wrist were complaining a bit. Hopefully, it’s just a new sensation, and as it becomes muscle memory, it will be easier on my weak little spindly wrists.
Another thing I asked about, because I literally promised someone I would (although now I forget who I promised!), was how to instruct a panicked, untrained sightie in guiding me through a doorway. Because doors open so many different ways, people are rushing, they’re often crowded areas, etc., I find that this is a place where many guides just freak out, flail, grab, push, pull, abandon, etc. It turns out that the life hack is to encourage the guide to do the narrow-passage technique and continue guiding as normal. I’m excited to see if instructing in this way will stop people from feeling awful about how doorways inevitably go.
I cited some other things I want to work on, but I imagine we WILL work on them and they’ll come up then, so I won’t go on and on. We walked the practice course twice to cement the relaxed shoulder, all-in-the-wrist technique, and reviewed the dorm one more time.
I then had a delicious peanut butter sandwich for lunch, which honestly was just so … calming and predictable, haha. I also discovered that the braille schedule on the bulletin board in the hallway had been tacked up upside-down, which caused some hilarity.
For the afternoon session, we went to the downtown to the training center there. The mobility stuff gets a little more technical here, but I’ll share some cool stuff we worked on:
* Anchoring: I somehow had never heard of this or been taught it. Essentially, when your cane touches a doorway, you keep its tip flush with the doorway while lifting the cane so that it’s pressed vertically against the door. You can then use the cane, not your hands and fingers, to feel for a doorhandle. This could prevent some nasty bites from hinges or hasps or whatever all else doors are made of, although I suppose you also have to still be careful not to get hit in the face.
Similarly, you can use anchoring at curbs. I was always taught, when hitting a curb, to do a big, side to side sweep before stepping up. The anchoring technique involves bringing your feet close to your cane tip as it anchors to the step, then lifting your cane to gauge the step’s height, as well as the area just at the top of the step, enough for you to step up safely. Then, and only then, can you go on your merry way. This gives you a better sense of how high up the step is, and also prevents you from blazing up curbs while swinging your cane wildly in a sweep as you chase after it, the way I was doing.
* Cut-backs: Another thing I never heard about! Basically, cut-backs confirm that you’re maintaining your intended line of travel after crossing a street, rather than veering off into a sidewalk or alley. I’m still kinda figuring these out, but essentially, this gets you away from the street, and involves shorelining until you find the “opening” back to the sidewalk.
* I was introduced to the genius term “sidewalk junk” to refer to things like trash cans, parking meters, and random signs, which I loved. In turn, I kept unintentionally using ostentatious words like, well, ostentatious. And circuitous. And lackadaisical. Which amused Jeffrey … who promptly also started punning.
* I told Jeffrey that I was going to write about this experience in my blog, and he rallied that he needed to video-tape part of our lesson for his mobility exam portfolio thing. Seems only fair.
* Apparently, in quieter areas, if you cross crookedly, you don’t need to leap up onto the sidewalk like a scalded cat and start springing around trying to find the curb-cut. You can stay in the street, as long as you’re safe, and feel around with your cane to see if you’re close to the curb. Who knew?
* The Three Rules Of Street Crossing:
1. Plant your feet, as though they’re in cement. Jeffrey said “see-ment,” which Martha also says, which made me grin and emulate him.
2. Extend your cane across your body. This is called a diagonal, which does make sense, but for some reason, I literally forgot about five times what this step was called. It was unclear. My brain was probably shorting out from having had more mobility than I’ve seen (pun) in years.
3. Flagging: I just learned this one when I had a couple O&M lessons last year. This asks you to get drivers’ attention by decisively extending your cane and indicating that you’re beginning to walk. Both in high school and last year, I was taught to go really big with this, and when I’m asked to go big, I go big. I think I almost hit Jeffrey with my wild flagging … which is not surprising, because I smacked someone’s car roof last year when I learned this. Jeffrey told me that, like with my arc, I can go smaller and that, if I start on the right, I , which is where my cane seems to like to be when I start to cross a street.
4. Take a big first step, and then pick up that pace!
* I practiced soliciting assistance across a street from Hannah, who pretended to be a wrist-grabbing newb with no experience of blind-kind. We had a good little talk about bodily autonomy and not being afraid of inconveniencing sighted people in general, whether they’re guiding or getting in my way, as I travel. True, but hard for me to internalize.
Those were the highlights! Tomorrow, we’ll do some route-planning and intersections, maybe lighted ones. We just did “all quiet, all clear” crossings today, to practice the mechanics. Other folks did way more complex stuff, but I’m internalizing what Hannah and Jeffrey impressed upon me: that, literally, we’re all on our own path, and that building confidence and skills that feel helpful to me is all that matters.
Can I also just say that it’s super weird to me not being guided everywhere the instant I struggle? I mean, I fully own that I am extremely guilty of letting myself be guided even when I don’t need it … again, mostly because, the second I take a wrong turn, it feels like sighties everywhere have a whole fit and scurry over to save me, which often involves touching and grabbing. So it’s become so easy for me to just … avoid all that and let myself be guided. But there’s no grabbing here! People give verbal directions when asked, and I feel simultaneously looked after and more independent for having taken on that extra ten seconds of fumbling … because it’s not really fumbling, it’s just finding my way there, and who cares what it looks like? It’s wild to me how I can and do totally believe this for other people, but have such a hard time with it for my own self.
I appreciate Jeffrey and Hannah for making mobility fun again, and told them so. There was so much laughter, talking, and silliness, and yet, we got a ton done. They were so kind, encouraging, and complimentary, and I feel so hopeful in light of that. As I told them, I do want to learn, and I do want to be better at mobility than I am. It just never felt particularly relevant to me, nor did I feel like I was able to understand it. They talked some about how the approaches to mobility are changing, and taking into account that a one-size-fits-all approach isn’t ideal in many cases.
In closing, we had a fun, tasty dinner … I ate a whole chicken breast and garlic bread, which is a lot for me in what has the potential to be a high-stress, intense week, without anyone here I know. At guide dog school, they literally called my mom to make sure I wasn’t going to die because I was eating so little and running myself so ragged. Granted, I wasn’t diagnosed with ARFID yet, so didn’t get any food accommodations, and it was a whole month, and I was a nervous wreck, but still! I love not having to worry about food on top of everything else. AND they gave me a cup of milk to-go for my room. So kind.
And now I have written these blogs while intermittently getting up to dance and sing to everything from “Dear Evan Hansen” to Disney jams, and it’s definitely time to get to bed. Sweet dreams and more tomorrow, assuming I still have the strength, haha. But I feel great, and am so, so happy that I took this plunge and that I’m being supported and taught in a way which feels fun, consensual, and accessible to me.