My ARFID, Explained

After I mentioned my ARFID diagnosis in my Leader Dog posts, a few folks asked for more info. Here’s a piece I wrote about (all caps) MY OWN, PERSONAL, INDIVIDUAL EXPERIENCE with ARFID. Mileage may vary. I never managed to find the below “article” a home with a publisher, so I’m stashing it here. I may do a follow-up later, as this article is now a little dated and I’m learning more about myself and ARFID as I truck along. Enjoy!

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A Spoonful Of Sugar: Arguing and Arbitrating With ARFID

By Caitlin Hernandez

Misery constricted my chest as I sat, rigid with dread, the fiberglass bench gouging my legs. Sunshine pulsed enticingly against my back as the whoops and screeches of unadulterated kindergarten joy filled my ears. Our richly deserved, twenty-minute recess was dwindling down the drain. I longed to run, to play on the structure, to practice jump-roping, hula-hooping, or dribbling a ball. But here I was, cloistered in the corner. “Hurry up, Caitlin,” one of the grown-ups prompted, not unkindly. “Finish eating and then you can play.” My friend Sammy joined the conversation, her chocolate-scented breath clashing obscenely with the orange slice on the napkin in front of me. “Just eat it,” she encouraged. “It’s no big deal.” Tears threatened. My nemesis had a thick, unchewable peel, and wet, stringy flesh that would stick between my teeth. Its acidic juice would be eye-wateringly bitter. I couldn’t bear to touch it, much less put it in my mouth.

Well-intentioned admonitions like Sammy’s would plague me forever … but at five years old, I had no way of knowing that. By five years old, I’d accepted, even appropriated, the traits adults ascribed to my eating behaviors. I was “picky.” “Fussy.” “Stubborn.” At five years old, I believed I’d “grow out of this”; that, perhaps, my sensitivities to certain tastes and textures were simply related to my congenital, total blindness; that, one day, the allure of bribes and blending in might make eating an orange slice … well, a piece of cake.

Hindsight—ironically, re: my aforementioned blindness—is twenty/twenty. My trials with eating are rooted, not in blindness—at least, not in blindness alone—but in a condition called ARFID: avoidant/restrictive food intake disorder. The National Eating Disorders’ web site explains that adults and children with ARFID have difficulty meeting nutritional needs, due to sensory issues, low appetite, fears of aversive consequences during or after meals, or combinations of all three.

Unlike better-known eating disorders such as anorexia and bulimia, ARFID is rarely tied to concerns about body shape or size; however, like other eating disorders, ARFID’S manifestations (a narrow list of safe foods; omissions of certain groups, colors, or textures of food; and failure to consume balanced nutrients) yield medical consequences (GI complaints, weight loss and/or gain, fatigue, poor immunity, etc.), which, in turn, impact social functioning. The teasing and criticism of peers, haranguing from concerned loved ones, and inaccurate or nonexistent advice from medical professionals can cause or increase depression and anxiety. Self-consciousness, about both eating “differently” and people’s comments and perceptions, can make shared meals miserable at best and impossible at worst.

I’ve heard ARFID described as terror of eating unsafe foods. For me, though, ARFID’S main ingredient is disgust, combined with daily doses of trepidation, mixed well with embarrassment, topped with a generous garnish of dismay. Imagine being asked to eat a bowl of mud, or a handful of plastic, or a slab of rotten meat. You’d probably feel horrified. Scared. Unable. Those “foods” feel dangerous, inedible. They are certainly not, and never could be, anything close to appetizing.

I love tacos … hard-shelled, with beef and cheese ONLY. NOTHING ELSE. PLAIN. After years of trial and error, I’ve learned the precise language necessary to order successfully at Taco Bell: “Two crispy tacos with no lettuce.” However, with or without the magic words, ordering tacos is always a gamble. Hard shells aren’t always available, meaning that I either have to chew through a leathery soft shell or scoop taco guts with a spoon, which usually consternates me enough to deplete my appetite. Often, I’ll be revolted by the gritty scrape of unwanted lettuce against my tongue, its ominous crunch filling my ears. The mushy consistency of beans or the eerie crawl of vegetables mingling with the meat and cheese will put me off a plate entirely. Even if some kind soul removes offending items, their taint has usually sullied the dish beyond repair. And if a main course oozes into a preferred side dish, I often won’t be able to eat that, either. Sometimes I can gag down a few bites, but by then, my roiling stomach and anxiety will be competing to terminate the meal.

Taking a bite is often a leap of faith. Have these crackers gone stale and changed from pleasantly crumbly to startlingly dry and dusty? Have these noodles begun to harden because I’m eating too slowly? Is my “plain meat” truly plain? Did this restaurant change its brand of beef, type of cheese, cooking technique, or seasoning since my last visit? Even water can taste metallic, plasticky, unfiltered, or unclean. Some of a food’s qualities can be assessed by touch, certainly … but handling food is so taboo in American culture, even and especially among the blind, that I rarely rely on this. Asking sighted people for help can lead to scoffing: “Parsley doesn’t taste like anything!” “You won’t even notice a difference!” And because I present as both disabled and younger than my years, my ordering a small, simple meal off the kids’ menu often causes people to infantalize me more than they already might.

As a child, I drank copious milk and ate enough meat and carbs to maintain what the doctors deemed “age-appropriate weight.” Besides having slightly high cholesterol, which was hereditary, my lab results were acceptable. The lunches I ate at school—pepperoni pizza, hot dogs (no bun), chicken nuggets (no sauce), cheese burgers (plain), and peanut butter sandwiches (sweet French bread only, and no jelly)—were typical enough among my peers that my eating quirks slipped under the radar.

In my teens, my appetite, weight, and iron levels dropped slightly, delaying puberty and negatively affecting my sleep. I was still unable to eat any fruits or vegetables beyond potatoes, french fries (no ketchup), and Motts applesauce (plain and unsweetened only), which adults always discounted.

During college, tasked with feeding myself independently for the first time in my life, I went through terrifying periods of little to no appetite. I often had horrible stomachaches, whether or not I managed to eat. Clumps of my hair fell out on the shower floor, and my blood tests revealed anemia.

When I graduated college after a particularly difficult senior year, a disturbing, pins-and-needles sensation permanently prickled every inch of my skin. My braille display felt painfully scratchy beneath my fingertips, and the peculiar numbness caused me to fumble and drop objects. Doctors cited anxiety and advised me to “relax.” I was able to navigate these obstacles reasonably well until the COVID-19 pandemic. My decrease in physical activity led to a diminished appetite. I was always cold, even in warm weather, and felt constantly exhausted, even when I rested. My headaches multiplied in frequency and intensity. Most distressing, I would routinely dissolve into tears, devastated by my lack of enthusiasm about even my favorite foods.

My (then) doctor, concerned by my unintentional and severe weight loss, cautioned that, due to my eating habits, I was at risk for everything from heart failure to a skull fracture. Alarm and guilt over my inability to eat “well” caused my desire for food to decline still further. If not for my partner’s gentle and ever-present support, the downward spiral would surely have continued.

Even after attending partial hospitalization and intensive outpatient eating disorder programs, in which I received one-to-one therapy and psychiatric support, it has proven impossible to disentangle ARFID, blindness, and anxiety: to know where one ends and the next begins. However, my original therapist and I continue to research ARFID together, and I find immense relief in naming and unpacking my lifelong struggles with food. As I work to resolve my shame and discomfort around eating, I strive to unlearn many ingrained convictions. All food — ice cream, boxed macaroni and cheese, McDonald’s — is good food, regardless of the time of day it’s ingested. Eating whatever I can manage is preferable to eating nothing at all. Fidgets and audiobooks are helpful distractions during mealtimes. Supplements can fill in gaps when a full meal feels overwhelming.

Even if I don’t feel hungry, simply sitting in front of a plate of pleasantly-aromatic safe foods can sometimes encourage hunger. Prepping food for the week and making lists of easy-to-eat safe foods provides structure and choice, especially when my partner is out of town. I don’t have to try new foods unless or until I’m ready. On some days, no spoonful of sugar will make the proverbial medicine go down. But on other days, I only need half a spoonful of sugar. The support of those who accept my experiences with ARFID can make even a sour day seem sweet.

But why? Martha’s take

This weekend I recorded a video of myself singing so that I could hopefully avoid the terror and tragedy of the choir audition. I seriously despise a “solo” choir audition.

Why, oh why do choir directors require solo auditions to join the choir? I totally understand that if I wanted to do a solo, I would need to audition…alone. That makes perfect sense to me. But believe you me, I will NEVER request a solo.

Once, many years ago, the choir I was in sent a small group around to do some caroling. About 12 of us walked from shop to shop in a neighborhood that had a lot of little antique stores and sang traditional winter songs. Some were wintery, like Jingle Bells, some were more religious like Hanukkah Blessings. One of the songs was a Christmas song, which I, personally, had sung thousands of times, since I was a child. My mother watched that movie every year, had multiple records with it that she played year round. Suffice it to say, I know the song. Our director invited me to sing a solo – a single line. Twelve words. I had been singing for many years by then and I was like, well, this is my chance. I know the song well, we’ll be in a small group, I’m going to go for it! And let me tell you that when time it was time for my line, my throat just closed up! Luckily there was a lovely person in the group with us who caught it and started singing the line, and I was able to join her. When we left that first shop, she and I had a quick conversation and I told her, tearfully, that I just could not do it. She said she was happy to help and she did, but EVERY time, y’all, EVERY time I had the same sensation. Even though she was there to get me started. Even though it was very low stakes. Most of the shops only had one person in them, the person behind the counter, and they were all very gracious when we came in and sang. But I just could not do it.

I get that exact feeling when I do an audition. In the last few years I have auditioned maybe 6 times. My prepared song is one that I have sung a capella many, many times (with a group) over the course of 20 years. I know it WELL. And yet, almost every time I forget the words mid-way through. It’s not a difficult piece and my voice is, you know, decent. But I get so stressed out every time!

And besides my own extreme response – why, why do directors care what I can do on my own, without music, in an empty room? In a choir, part of what’s needed is that you blend well with other people. That you can stay on your part even if those around you are singing something else. That you can learn the music, stay with the rhythm, come in at the right time. None of that can be tested by making me stand alone and sing you a song.

Also, sight reading! I understand that it’s a useful skill, I do. But in what choir is the director going to hand out a brand new piece of music and then lead the choir out onto the stage to perform it? None that I’ve ever been in. Maybe it makes their job easier if more people get it quickly, but I have never been asked to just read it and perform it in my life (also, I get it if you are a professional singer, but these are community choirs, y’all).  

In one audition last year, someone played a riff and I sang it back. I can do that, and did. But then it turned out he wanted me to listen to 8 bars of music and sing the whole thing back on a la or doo something like that. Uh, no. My brain doesn’t work that way. And also, except for a capella singing, when will I need to do that? Give me 8 bars WITH WORDS and I would probably remember the notes. But why, oh why do I need to be able to do that to be allowed to join the choir? Will there be lots of concerts wherein there will be no time to practice and no words at all in the song? That seems extremely unlikely to me.

For all the many choir directors reading this (hahaha) please feel free to stand me with a couple of your singers (or I can bring along someone to sing with me!) and give me my part. I will happily sing out and stay on my part. Add me in with a few singers and notice how well I can blend and not overpower (unless I have the melody). Listen to how I can follow direction for pace and dynamics.

I sang in a fantastic, large choir wherein we regularly sang in mixed groups (one person from each part standing together vs all the sopranos on one end and the basses on the other end) and managed to know my part. I’m fantastic at memorizing my words. I am attentive to the director and have enough relative pitch to correct myself if necessary while singing. I am good at listening to other singers, too, and asking for help if I need it. All I want to do is sing in a group with music I find interesting and challenging. Wish me luck, y’all.

Here’s a song from Twin Cities Women’s Choir – one of my faves!

But Why?

I taught a kiddo during her third and fourth-grade years who, when asked to do something, would ask, nine out of ten times, “But WHY?”
This wasn’t always rooted in avoidance, although she is human and we were at school, so at times, it understandably was. But at other times, it was legitimate curiosity. Honest bafflement as to why I was asking her to do something which may have seemed, to her, ludicrous, repetitive, tedious, stressful … you pick the adjective. And, I mean, can you blame her? I often wonder why school asks kids to do the many things it asks them to do, in the precise way it insists they must do it.

As I mentioned in some of my Leader Dog posts, working on mobility as a thirty-something made me ask that same “But why?” question from my youth, but with added adult wisdom. And exasperation. And frustration, too, because seriously? WHY!?
I know blind folks personally who really enjoy mobility. Now, to be clear, I do feel like a handful of blind people exaggerate their skills, fake their joy, and subsequently pontificate about the importance and beauty of relentlessly independent travel to put myself and other blind mobility strugglers down. I’m not here for that. But I do actually know and believe the blind folks who cite, with genuine (and charmingly nerdy) enthusiasm, the empowerment and self-determination they enjoy when they puzzle out a new route, city, or trip in a way that feels good to them. Some folks really seem to love jetting out their front door, wandering around with their mobility tools and skills, and seeing (heh) what happens.
I get this. I don’t relate, but I understand. I can imagine that it feels awesome. I believe in that. It’s just so far from my own truth that I’m promptly brought back to my “why” question.
If it doesn’t serve me to struggle my way through a route I don’t know — to use “structured discovery,” as some call it — then why, WHY, would I put myself through it? If I could just as easily take a cab with my Para-Stranded discount, carve out the time to Para-Stranded itself and do work on the way, take Uber or Waymo, ride with a friend and buy them lunch to make up for their driving … why would I not?
I do acknowledge that I have a ton of privilege in this arena. I live in San Francisco, where Para-Transit, though always on its own timeline, is reliable and equitable, charging a flat fare (the same price as the MUNI buses) no matter where in the city you’re going. We’re offered discounted cab fares. Ubers and Waymos are plentiful. I have a sighted partner with a car who often drives and accompanies me places. These are privileges that many blind folks don’t have. Many blind folks, faced with the choice between “wing it” or “don’t go,” are caught between a rock and a hard place, and God do I feel for them. I know how lucky I am. I do. If that were my choice — if I couldn’t get rides and navigate myself to wherever I need to be in a way that works for me — I would feel horribly, terrifyingly stuck. And trapped. And bored. Because, though I’m becoming more and more introverted in my old age, and often stay home rather than go out and socialize, especially in groups or at big, noisy events, I still very much want and need to get out and do things. I often tag along with Martha on errands that have nothing to do with me, just because I like to be out and about … and to be with her, obviously. But I digress, as usual.
Let’s leave out the one very valid answer to my “But why” whining, which is the “You’ll have to do spontaneous, unplanned mobility, because someday, you might be in an area without affordable, feasible access to support, and then you’ll have to figure things out.” Very real, but not applicable to my current situation.
So, as I asked my therapist the other day, I still don’t understand: why would I, Caitlin, force myself to, essentially, self-inflict a dropoff? If, for example, an Uber driver dumps me in the wrong place and is incapable of giving me any useful information (which has happened, several times), what would I gain from pushing myself to conquer the impromptu mission independently, when I’m already in a heightened state of anxiety about the uncertainty of the situation?
When faced with this theoretical situation, I do typically walk around and try to get my bearings. But let’s be real: if someone asks me if I’d like help, I tell them where I’m trying to go and accept a guiding arm, if offered. Let’s also be real: most sighted people aren’t too great at giving clear, calm, informative, relevant verbal directions. And, I’m now learning, crossing a street in San Francisco can land you in a place you didn’t even know existed until that moment. It’s often not as simple as “cross the street at the corner,” and I’m still trying to wrap my head around the many ways street crossings can be so much more complex.
Now, might I flex and ultimately bulk up my proverbial mobility muscles by acclimating myself to the anxiety of wandering around blindly for a few extra minutes? Sure … probably. But again … WHY?
Why is it so often deemed “failure” to accept help? Why is asking for guidance not seen as a valuable tool?
Hannah and Jeffrey give me hope that this is changing. They assured me that asking for information, taking and relying heavily upon my own notes, using my phone, even getting a sighted guide out in the world are all pieces of mobility. Mobility can be, for me, whatever I want or need it to be, in any given situation. Their goal wasn’t independence; it was equipping me with skills and confidence, so I can get myself out of jams. They did that well, and I love that.
I feel more excited and hopeful about working on mobility than I ever have, in my whole life. And yet, I still don’t have a good answer to my multi-faceted “why” question.
For me — just for me, because, of course, mileage will vary for other blind folks — mobility often just feels so … hard. And scary. Tiptoeing, sometimes, toward painful, upsetting, and isolating. For me, it magnifies blindness, pun intended, if and when I think about it too much, or work at it for too long.

In rehashing the drop-off activity with my therapist, I explained that it wasn’t just the scenario itself that rattled me. It was the actual, visceral feeling the setup evoked: that close-to-tears, better-not-stand-still, tight-throated, dry-mouthed, tense-bodied, panicked feeling.
I hadn’t experienced that precise feeling since I’d done drop-offs in my youth … and the horror attached to being mired in that feeling for the first time in so long only exacerbated the feeling.
When asked about how I navigated college as a blind person, I self-deprecatingly explain that I never went anywhere alone … and I didn’t. Disability vans, classmates, a cappella friends, house-mates, sighted guides employed by the campus’s Disability Resource Center, RA’S and TA’S, student proctors and workers … you name it, I found and leaned on them.
In grad school, my dad drilled the routes to my classes with me, as well as the area of campus where I lived for a semester. I navigated independently that semester and got a great confidence boost from it. But living on-campus was too expensive, which pushed me to take Para-Transit. Negotiating their pick-ups and drop-offs on a sprawling college campus was challenging and frustrating, but I adapted.
I’ve always framed these practices as weaknesses, although, of late, I do demand, often defensively, to know why people can’t see the resourcefulness and tenacity behind them. Planning your whole life around how you’re going to get from point A to point B, perhaps especially if point A and point B are so close together that anyone would be going significantly out of their way to support you, can feel embarrassing, pathetic, and shameful. But my people were, are, and continue to be kind and understanding, by and large. I find other ways to give back and to be a good, supportive friend so that, most of the time, I don’t feel overly burdensome.
My therapist surprised me by pointing out that all my planning and scheduling and thinking ahead served a crucial purpose, albeit, perhaps, a subconscious one. It protected me from that anxiety-riddled, claustrophobic “mobility drop-off” feeling.
I had a lot of other things to be anxious about during college and grad school, even if I couldn’t have put names to all of them. On some level, maybe I knew that stacking mobility on top of that preexisting, precarious pile of struggles would have been too much. So I just … didn’t.
And now that I have some more bandwidth, and I’m working on mobility … but in my own way. And not to project independence. If perceived independence for the sighted gaze is the answer to the “why” — and, sadly, I believe it is, for many people — then it’s not MY answer.
I’m working on fostering a little more mobility confidence in service of myself, whatever that looks or feels like for me … full stop.
I appreciated my therapist so much when she pointed out, “The drop-off was just pretend, and you got through it, even if you felt that it didn’t go well. But in real life, you’ve created a system that works for you. You’ve made structures for yourself that feel good. And in real life, you’re doing well.”
I’ll be keeping that reminder close when mobility, as it inevitably does, starts to feel like too much.

 

Snobs?

Y’all. Someone recently said that Caitlin and I are choir snobs, and in the moment I kind of laughed but also I had a moment where I was like, What? I’m no snob! Then I thought about it for another few seconds and I realized that, if I’m honest, it might be true. Or anyway, it might be true that I’m a choir director snob.

I spent a good 15 years with 3 directors that I really, really liked. Were they objectively better than other directors? I don’t know, because my opinion can only be subjective. But I can tell you this: I sang better with those 3 directors than with any of the other directors I’ve sung with.

I have been singing in a choir since I was about 11 years old. I started in church choirs (once someone called me a choir hopper – I didn’t really have a spiritual home at that time so used to attend churches that were singing music I liked – until they weren’t) and did that for MANY years.

At one church we sang Carmina Burana and the director taught us how to get to the right pitch – there are a lot of moving parts in that piece. He also did a great job of having us all pronounce the words the same way. The text is written in Latin, Middle High German and Old French, so I’m not saying that we sounded like native speakers of any of those languages, but I do know that we had a generally agreed upon way to say all the words. I learned a lot from him about phrasing and dynamics, too.

(Also ran: I’d be remiss if I left out the director of my mom’s choir, Miss Joanie. I didn’t live there so only joined when I was in town, but she had exacting standards delivered with such dry humor I often found myself laughing even if it was my section getting the reprimand.

“Now beloveds,” she would say, “are you making a joyful noise to the Lord? Because when I look at your faces I am just seeing foreheads. I need y’all to look at me and I want y’all to smile like you are praising Jesus with this song.”)

Eventually I discovered community choirs and I discovered that there were ways that singing fed my soul – even without the trappings of religion.

I was lucky enough to start with a director that poured her whole heart and soul into each song, each performance. Sometimes she danced around the room to give us a feel for the song, sometimes she scolded, sometimes she made us put down our music even though we didn’t think we were ready. Her warm-ups were directly related to the music we were about to sing – buzzy lip trills before songs that required that sound – soaring high notes to prep first sopranos – quick tongue twisters for fast lyrics. We had learning tracks and sectionals to figure out the tricky parts.

Beyond the way we sang – she helped us feel like a community. She told us stories we could relate to and encouraged us to help each other. Sometimes in a “ask your neighbor” kind of way, but also sometimes in a “listen to the altos at this part of the song” kind of way. I learned to not just learn my notes but learn how they fit in with the whole song. We once sang a version of Ave Maria that was extremely complicated – I’m not saying I was 100% correct every time – but I was closer that I imagined I could be because I learned to listen to the other parts.

My next community choir had a snarky director who also expected us to lean on each other. To learn when to come in even if he didn’t give us the cue. Not to say that he didn’t – he did when he could – but he wanted us to function not as individual singers dependent on him, but more as a group that supported each other.

Once he divided us up by section and asked us to go and listen to the learning track together.

“Just play it 3 times in a row and come back,” he said.

We did – and I have to say not everyone in my section thought it was a good use of our time – but when we came back, the whole choir sounded better.

He would sometimes have us listen to the different tracks as a group, too, and point out what basses were doing while sopranos were doing something else. Sometimes we listened and then sang it back in short segments. Rather than feeling deficient for needing those audio learning tracks, I started feeling like this was just one of many tools I could use to improve my singing.

Am I a choir snob? I don’t think so. I have enjoyed lots of group singing projects. But it very well might be true that I am a choir director snob. If y’all have favorite choir director habits, feel free to drop us a comment!

Relationships are Complicated

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.

Brrrring!

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!

Mobility At Home

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!”

Leader Dogs, Day 6: Final Day

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.

—

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. :)

I’m ready!

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.

Leader Dogs, Day 5

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.