"doing so well"

dear diary,

I just got off the phone with a friend; not so close or intimate a friendship, but still, a friend. The purpose of our phone call was to catch up, check in. I worry about her like I worry about all of my trans and queer friends in the US right now.

The majority of our phone call was her own life update, stunted occasionally by my responses to her asking how I was doing in specific areas (how is England. How is health. How is your partner.)

England, and even surprisingly the NHS, I gushed about, but health wise, I am not doing well; having fought off many illnesses since arriving, I'm still dealing with the chronic pains of several of my diagnoses. Right now, I appear to be in a bit of a flare. I'm in daily pain. I'm at reduced capacity.

She, on the other hand, is doing amazing. And I am glad. Succeeding in all those metrics typical of the American dream; despite it currently being, for many, an American nightmare. Financial independence on the horizon, her first home purchase, many communities and friendships all over, writing a book.

I mentioned that I was catching up with several long distance friends, and the two other trans women I am friends with besides her, are NOT doing so well.

Did she have any advice for them, or me? I expected perhaps, a news diet, or recommendations for meeting people, for finding community.

What I got was a long list of all the things she does. An astonishing list.

She goes to the gym five times a week, getting super buff. She has several weekly hang outs with different friends, she's joined an international spiritual practice with a local division, she makes time to read in her favorite restaurant every week, where she's befriended the staff. She emphasized the importance of her rituals, her advice is to commit to a schedule. She loves her work (and does multiple jobs), and while she went through some hardships over the winter, she was only positive, optimistic, and unfailingly joyful on the phone.

I was struck at how impossible her advice seemed, for a dynamically disabled person like me. A single, slow-paced pilates class had me recovering for a week. A social occasion is peppered with the anxiety of catching an illness, a multi-month set back. Even a one-on-one hang out has its risks, its recovery time. A schedule, when my capacity each day changes so wildly, is impossible right now.

All of the advice she gave me, while well-meaning, felt ableist, untenable. This is from someone who is trans, queer, neurodivergent.

As someone with ADHD, I know not to take advice from typical "self-help" books. I can't just do things, like most people do. But ADHD-friendly advice works well.

I am learning, as a disabled person, that the same thing applies. The "advice" I am given by people who have not suffered a chronic illness or disability, must often be discarded, or taken with a grain of salt, as well-meaning as it is. The advice I seek must be carefully curated, or could lead me down a path to another flare, another few months without traditional "productivity".

I felt she was telling me to just "bootstrap it". She told me she'd always been "a really resilient person", but that means something different coming from someone seemingly so super-abled. I wonder what advice I would have given, back in my early twenties, when I was so able-bodied, before so much– but even then I was suffering. My disorders have been with me the whole time; I pushed through them, ignored them like my doctors showed me too, until they shut me down.

I am also a resilient person. But I mean that in a completely different way.

Of course, I would love to go to the gym, even once a week, to experience a stronger, more resilient body. I miss climbing, and dance, and swordfighting. I would love to be a part of an in-person community again, to hang out in public spaces without fear, to see a friend on a whim; without ever questioning whether I have enough spoons for it. To push through to do something I want to do, without the threat of collapse.

My resiliency lies in my will to live, picking myself up off the floor, again and again. In the careful cultivation of trust between my mind and body, even while I am in pain. I cannot do many things right now. But still, I am here. And at times, continuing to be here is the hardest thing I've ever done.

When getting off the phone, she told me "I'm so glad to hear you are doing so well. I hope things continue to get better and better for you."

I was gobsmacked. Did we have the same conversation? Sure, I am doing better here than in the US, of course. But by most metrics, I am still not "doing so well". Doing my best? Yes.

It makes me think, perhaps, I've lost my rose-colored glasses. If she can walk through life, as a trans woman, right now, in the USA, and be all sunshine and positivity, talking about all the personal things that are going right for her right now– what am I doing? If she can look at my situation, and think I am doing so well... am I?

Perhaps I need a perspective change. I need the glasses again, half full and rose-colored, to focus on the good, even when that good does not outweigh all the bad.

Am I too focused on the negative? On mitigating risks, instead of taking calculated ones?

I don't know, diary. I don't know. If she's reading this now; I enjoyed our conversation, it's made me think a lot. To all who read this, I know you do your best too, and I am proud of you too; whether being here is easy or not.

in quiet contemplation,
Aimee