5 Years

Some people who become chronically ill and/or disabled can point at a calendar at the date when their life changed. For others it is much more gradual. Initially I just thought I was worn out from a busy weekend, then thought maybe I was fighting off a cold, then realized something didn’t seem right but maybe a doctor could fix it, and then eventually, over time, it started to seem like it wasn’t going to go away any time soon. I also keep making connections to brief spells of symptoms at several other times in my life long before things got bad that seem like they could be related, so I can’t really pinpoint exactly when I got sick. What I can do is point at a calendar at the last day I felt good, healthy, energetic. And that day was five years ago today.

I’m not posting for pity or sympathy, but to share some of the complicated feelings. I tend to be a pretty happy person (thanks, brain chemistry), but these five years have not been easy and I think it’s important to share that too. My emotions over the past month or so have been a bit of a mess (and that’s not even including more general feelings about the pandemic and politics and my home state burning), and I suspect they will continue to be all over the place for a while as I pass through the memories of what those first days, weeks, months were like, and all that has happened since then.

I’m sad about what often feels like lost time, lost opportunity. I’m frustrated it took so long to get any semblance of an answer about what was happening to me, that even then the medications and tools and lifestyle changes have kind of just taken the edge off of my symptoms but didn’t make them go away. I’m frustrated that I still don’t really feel like I have adequate answers now. I grieve the career I worked so hard to get a degree for (including two semesters right as this was all starting), the hobbies I’ve had to lay aside, the life I thought I was getting ready to live. I grieve the person I was before, even though I know I’m still the same person now. I’m heartbroken that in about a month I will have been sick for half of my nephew’s life, and after that I will have been sick for more than half of his life, and he was a baby for a good chunk of the before. As much as I still love the me I am now, I miss that other person. It sometimes feels really strange that there are people who only know this version of me, like they don’t really know the whole me, like their idea of who I am is incomplete and always will be.

I’m happy about the extra time I’ve had with my family and friends in San Francisco since I had to move back home. I’m grateful for the medical help I have received, for the patient communities I’ve found, for the fellow spoonies (people with chronic illnesses; look up the “spoon theory”) who have shared their precious time and energy and knowledge and resources with me. I’m grateful for the privileges I have, and I’m endlessly appreciative of the family and friends who have stuck around and provided so much love and support. I feel lucky to be going through this in the days of the internet and smartphones and seemingly endless, easily-accessible entertainment options. I’m grateful that, most of the time anyway, my symptoms still allow me to enjoy a lot of things, especially since getting mobility devices (back when I was still going out into the world before the pandemic). I’m grateful for what accessibility does exist around me, even though it is still lacking in so many ways, and for the disability advocates of the past, present, and future for all they have done, are doing, will do.

I remember a lot of how I felt back then. I was confused and sad and scared. I didn’t know why I was so tired, or why resting only helped a little and then only lasted until I started doing things again. I found myself in the weird position of really wanting doctors to find something wrong with me because I knew something was wrong even if they couldn’t see it, but they found nothing. I grieved. I doubted myself. I had to let go of the research project I was trying to do as part of my Master’s degree program because it wasn’t a requirement, just something I wanted to do, and I was barely managing the things that needed to be done. This may have been the first time I had to admit to myself that there was something I just could not do. That was hard. I cried a lot. I didn’t understand, if it was “just stress” like the doctors told me, why it hadn’t happened during some other stressful time during school, or why it was happening to me but not others around me. Weren’t we all stressed? I remember how scared I was back then. I remember that I am still scared. Especially since the pandemic came around.

I’m scared of getting COVID-19 because even just a recent mild cold took me two or three months to get over and has left me at a lower level of function than I was at before getting it. Young and previously healthy “long haulers” are being left with lingering symptoms so similar to what I already experience that I’m terrified of what it could leave me with when my baseline is already so low. I understand that an illness that “only” kills those who are older and/or have pre-existing conditions makes it seem less threatening, but I also hear how that makes so many lives sound expendable, even if that isn’t what is meant by it. (It also isn’t true.) I appreciate how much of the world became more accessible to me when the world moved indoors, but I’m angry that it wasn’t available to disabled folks before and probably will go away again. I’m both grateful and sad that I already spent most of my time at home so sheltering-in-place isn’t as much of a change for me as it is for many others. I want things to be able to go back to normal, but I also want the healthy and able-bodied to remember what it was like being stuck at home and know that this is actually pretty standard for a lot of disabled and/or chronically ill folks, either because of their symptoms or just a straight up lack of accessibility.

I miss being able to read for hours at a time and get books from the library, but I’m grateful for my e-reader and the library’s digital collection for making it a little easier to read when I can. I miss going on hikes and walks and out to bars with my friends, but I love going out in my power chair or sitting with them on the couch or in the park or at a cafe (or occasionally still at a bar). I miss dancing and glass blowing and doing messy, crafty things that my body just doesn’t handle well now, but I love doing little dances to myself here and there as I’m able, and I’m really excited to start exploring digital drawing and painting and see where that leads me.

More than anything, I’m tired. More than tired, really, but it’s still the easiest word to use even if it is severely lacking in weight. Something like fatigued, or exhausted is probably more accurate, and yet they make me feel like I’m exaggerating or being dramatic, and so I keep coming back to tired. I’m tired of trying to find the right words. And I’m tired of being tired. I would just push through the tired if I hadn’t had the lesson that it only makes things worse forced upon me time after time after time. I’m tired of having to be so careful all of the time not to overexert myself, especially when the threshold of what’s “too much” is so low. I’m tired of “paying for” so many things in worsened symptoms. I’m tired of my symptoms and I’m tired of the things I have to do to manage my symptoms and I’m tired of trying to find new answers and things to help.

But this is the only body I’ve got and this is how it is. Most of the time I feel pretty okay with everything, pretty content. I’ve gone through the stages of grief so many times and landed, more or less, at acceptance. Yeah, the others come back every so often, especially recently with my post-cold setback leading up to my 5-year sickaversary, but nothing is permanent, whether it’s grief or a bad symptom flare. “This too shall pass.”

Thinking back to that last healthy weekend is bittersweet to say the least. I long to feel like that again, to have that energy and ability to be so carefree again. To be able to go to a friend’s wedding and dance and celebrate with friends one evening, and then drive to the Disney parks with them the next morning for a full day of park-hopping. To go wandering all over both parks starting early in the morning and reach the end of the day so amped up from the parade that we went dancing along behind the last float when it ended. I think the song had “When can we do this again?” as a big part of the chorus, a special version of “When Can I See You Again?” by Owl City for this particular parade. I didn’t know then that my answer to that question was actually so sad. I definitely grieve for those times. But I am also so grateful and glad that I have such a wonderful and happy weekend to look back on. Maybe it won’t be a “last,” maybe I’ll feel like that again one day, but if it was a “last” then I’m glad it was such an amazing one.