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!

words from home

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.

NAME GAME


HINT: Skip to the end if you're wondering why Martha calls me "TJ."

For as long as I can remember, I wanted a nickname. For whatever reason, I've always connected nicknames with words like "blindie," blind jokes, and the right to (with consent) guide me in an unconventional way. All these things have to be earned.
In the same way I despise outer-circle folks going around pontificating about "blindies," teasing me for a "blawkward" (blind plus awkward) moment, or steering me by the shoulders, I have always chafed at people's insistence on calling me "Cait," "CJ," or, God forbid, "Caity," unless they've expressly been told that I liked it.

I wonder if I connected these ideas because, in the same way people project false familiarity around blindness, I feel that people have attached nicknames to me as a means of declaring friendship, connection, or even ownership that isn't really there. Or maybe it's just because, as a blind kid trying to cut it in a sighted world, with extracurriculars, blind stuff, and (then unidentified) ARFID sprinkled over a typical childhood, I felt like I had so little autonomy.

As a kid, I was Caitlin to just about everyone. Very early on, my dad nicknamed me Trouble, or its derivatives, Troub and Troublemaker ... but that was very much his nickname alone. No one else used it until, years later, entirely unaware of my dad's nickname for me, my seventh-grade science teacher also awarded me the same label.

"Cait" and "Caity" were exclusively family names, with only my grandparents and Aunt Linda allowed to use "Caity." My grandpa, with his affinity for Spanglish mixed with the occasional German from my grandma, called me "Diablito," or "little devil." In hindsight, I found it interesting that he didn't use "Diablita"; perhaps this was a nod to my wild-child, tomboyish behavior. I wish I'd thought to ask him before he passed away in 2012.

By fourth grade, I was taking nicknaming into my own hands. My infamous Deraitland bestie, Derek, myself, and some other friends sometimes invented languages. In one, "Caitlin" backwards became "Niltiac," pronounced sort of like "Nil-shyack." In another, "Caitlin" in braille, upside-down, became "Itincoma," which I loathed and Derek, subsequently, used often in an attempt to rankle me.

The nickname I lusted after constantly was CJ, for my first and middle initials. Derek, happily, was DJ, a nickname which I used a lot. CJ never really took, but for a time, we became "Coodge" and "Doodge," with the double Os in "book." But these were very much Deraitland names, and perhaps with good reason. I could be misremembering, but they may have been a nod to our constant fixation with imitating the speech synthesizers of the time. Though CJ and DJ would not have been read as "coodge" and "doodge," those names were reasonable approximations of how a screenreader might have misread them.
By fifth grade, I was going totally rogue. I brailled and typed "Cat Hernandez" on all my papers, as though it was my given name. When some grown-ups would obligingly write "Cat" but never call me that, I tried Kit, Kit-Cat, and, in a final, desperate attempt, C. Nothing worked.

"Cait" and "Caity" remained staples with the family; my dad added "It" and "Little It" to Troub and Trouble; and my sister, for reasons I now can't remember, called me Poopsy. My mom, when I was being particularly cute, would call me her "Little Lamb Chop," which I liked only because I loved both lamb chops and the show Lambchop's Playalong. But such a nickname was too sappy for public consumption.

This seems like a logical time to pause and state that I have no problem with the name "Caitlin." It fits me. I'm especially grateful my parents picked the spelling they did, not only because I prefer the way my spelling looks in braille to that of all the others, but also because it enables me to make my albeit somewhat confusing crack, "Caitlin: remember, two Is but cannot C. Get it? Two EYES but cannot SEE," which, if you don't think about it so hard that you wonder whether the "cannot" means you ought to use a K and not, in fact, the correct C, helps people spell my name correctly.

No ... in spite of the fact that there's no good story behind my name, other than that it went well with Courtney, my older sister's name, and that my dad had heard the name and thought it was, quote, "nice," I like my name. I think, though, that I did sometimes come to associate it with being in trouble. Maybe it was because people couldn't wave, make eye contact, or get to me visually, but often, even today, when I hear my name called, even in a casual way, I immediately panic and think that I'm in trouble. Sad, but perhaps true ... and possibly a reason why I always longed for a nickname that wasn't restricted to a certain crew of friends.

In college, I tried to start out as CJ with my a cappella group. A few people used it somewhat, but in more of a tongue-in-cheek way, not as a true nickname. Amusingly, a label which did stick was "Cajherna," derived from my collegiate e-mail address, which I had not chosen. Apparently, there were so many C Hernandezs that the system spat out the second letter of my name, my middle initial, and the first part of Hernandez. I had to dictate my school e-mail address so many times when signing in at events that my a cappella group, claiming it sounded like a sneeze, began to call me that every so often. Another of the Acquire contingent, Andrea, also took to teasingly calling me Button, which came to light because of a random guy who, upon seeing us in Safeway and recognizing us from busking, said, "I remember you all singing, and I had to stop and tell you ... you're just as cute as a button." Some casual ableism there, as he must have known we were both college students and still insisted on treating me like a disabled child. However, as with "blindies," we took the comment and turned it into something fun.

Some other in-group names:
* Dez: short for Hernandez, from a later Acquire member, Caroline, and later adopted by the CRE Outreach (now Arts Up LA) boys.
* MC, PC, LC: standing for "Poor Child," "My Child," and "Little Caitlin," respectively: all nicknames my dad came up with in the era of texting, again poking fun at people's insistence on feeling sorry for me or infantalizing me, even when nothing is wrong.
* Little: What my sister started calling me, after getting me a braille bracelet which read "little sis." (She, of course, is Big, which appalls my mom, because some people are still laboring under the delusion that being big is bad. I might add that, though she's taller than me, Courtney is actually more delicate / small-presenting.)
* Ti-Ti: What my niece has called me every since she could talk ... technically from the Spanish Ti­a, although no one in our family speaks Spanish meaningfully, and I doubt the kid even knows that ... I was just always Ti-Ti. It would be so weird if she ever called me Caitlin.

The thing with nicknames, though, is that, beyond lamenting frequently that you want one, you can't force people to come up with the perfect, awesome, organic encapsulation of you. And then, once they find one, you can't coerce other people into using it ... and even if you could, it might seem weird, or nonsensical, depending on the origin of the nickname.

Which brings us to Martha, and TJ.
So you all know our adorable eight-year-old Rock Wilder (Rottweiler), Maite. Mighty Maite. Big Maíte. Fubu (For Us, By Us). Big Rock. Ruccoon (after Rocky Raccoon). And on and on.

Since Maite was already Martha's "dogter" before I came on the scene, I became "Stepmom" to her. If you've heard any of our videos or recordings, or read transcripts, Maite has a very distinct way of speaking, a little like a kid with some speech quirks, sound additions and deletions, and some unexpected ways of mixing and garbling words and terms. So Stepmom became "Tep Mom" ... and, because I, of course, had told Martha about my quest to be "CJ," CJ, in Mai­te-speak, became "TJ." And because Martha is Martha, TJ stuck more than CJ did, because Maíte is such a talkative fixture in our house.

Now, because I'm a rule-following people-pleaser, I did object, "But TJ has to stand for something. It's too confusing to explain, otherwise. How about Trouble Junior? Trouble has always stuck, and Maite is clearly the biggest troublemaker in our house."
To which Maite, of course, responded, "That is not no true story, Tepmom, GAH!"

But TJ stuck ... and now you all know the story. And while I would prefer for you to just call me Caitlin, I'm always open to new nickname ideas, should they arise. Just make sure you've earned it, and that I've approved, before you go shouting it all over the place.

The thing is…

…wherever you go, there you are. TJ (Caitlin) calls me The Ruiner, and it’s a title that I hold with pride. IYKYK. However, noticing racism, ableism, sexism and other oppressions takes a toll. TJ and I went on a cruise, y’all, and I had no idea what to expect. Neither one of us has ever done it, but this was our idea of a vacation that combined travel with a special interest, so we decided to go for it.

I’m not sure why I was surprised to find that this floating hotel was a small microcosm of the US. Or maybe a slice of rich mostly United Statesians. Yes, there were people there from other places, but we mostly ran into yt people from the US. Also, if you are looking for the highlights, you’ll have to scroll to the picture at the bottom.

The whole trip started out rocky because they (the cruise line AND the Star Trek folks) refused to make the printed material accessible to Caitlin. All they had to do was email her the things! I know that those documents exist in e-form, because they were printed out and left in our rooms every day. I’m guessing they were printed before we left shore, so they could have, in theory, emailed her everything before we left. Yes, I know things can change, but they could have said, This is how things stand right now, and the schedule is subject to change. It’s not that hard. And I suspect that kind of accommodation would be helpful for many people, not just blindies.

And speaking of accommodations – I saw a number of so-called service dogs on the boat. I know, I know, there’s no way to tell from over where I am what those dogs were there to do. There are MANY ways a dog can provide a service that I would not be able to see. That said, I saw several that I had serious doubts about. The thing is, if I had doubts, other people also had doubts. I’m not saying people cannot have their service dogs with them. At all. But there are people who game the system and convince someone that their dog qualifies. If that dog then behaves badly, it makes it that much harder for people with actual service dogs to get access later.

Meanwhile….colonizer vibes were everywhere. Almost all of the people working on the ship were BIPOC. Wait staff, cleaners, stewards and cooks, all BIPOC and working with a level of invisibility that I found super uncomfortable. Passengers (mostly yt) walked past them without a word, so much so that when we greeted people they seemed surprised that we noticed them. We heard one woman tell the wait staff that he needed to have his eyes checked, and asked if he was blind because he jokingly told her he needed to see her ID when she ordered wine. I met someone just before the trip who had worked on cruises before and they told me that they don’t make much money and that tips would likely be appreciated – but twice employees told us that the tip was too high, and tried to give it back.

The whole thing was extremely wasteful, too. Given that the food is included, I knew there would be waste, but it was more than I imagined. We made it to breakfast just once (it was a vacation, y’all. Don’t judge) and as we were going out I saw a man scooping yogurt out of the cup and into a bucket. Straight to the trash. I get it, once they’ve put them into those cups with fruit, they can’t save them for the next day, but there were another dozen cups waiting for him. Every day I saw many people leaving piles of food on the table as they left the dining area.

The steward was prepared to change our towels twice a day! And sheets once a day. I told him that wasn’t necessary for us, but walking down the corridor our room was on I saw people removing piles of towels and linens from the same rooms every day.

Image shows TJ gleefully petting a dolphin. She was the only one in our group that got to tickle a dolphin and the resulting vocalizations were awesome.

All of these things are present in my everyday life – but on a boat out in the middle of the ocean – there was no respite. I loved being able to spend pretty much every minute with TJ. I was happy to watch her enjoy the Wave Rider and go down the water slide. I enjoyed some panels and Tim Russ jamming with his band. We got to hang out with dolphins which, while also fraught, was a fantastic experience. We walked around holding hands for hours every day. We read and talked and laughed. I love her dearly and appreciated every minute of our time together. AND I was VERY ready to get off that boat at the end of the trip. TJ and I really have co-created a life that I love, and I feel fortunate for every minute of it.