This is a heavy topic, obviously. My instinct is to focus on the greater disability or chronic illness community, but I think I'm going to take a step back and talk about my own experience with coping and grieving for a minute.
Being diagnosed with an incurable condition is hard. Knowing that there is no treatment is hard. Having to navigate the gigantic puzzle that is medications, reactions, injury, recovery, physical therapy, etc. is hard. Feeling like you need to put on a brave face through all of that because you don't want to worry or inconvenience the people around you is hard. There is no way around it.
But there's also having to live with the feeling of your life just...stagnating. Everyone around you gets to keep going with their lives while you have to stop. Your friends are growing up, getting married, having children, pursuing their careers. Let's get this out of the way- I'm 33 and I live with my parents. I get small jobs occasionally, but I have no job. I have a wonderful boyfriend, but he and I would both like me to have more agency in terms of when and how I see him. My life is not at all how I thought it would be.
First it was school. Then it was dance, that one hurt. Dance wasn't just a hobby or a career path or even identity. Calling it "dance" feels so reductive, too. That makes it sound like a kid's after school club. Talk to any artist you know, and they'll tell you if they're forced to stop working in their chosen field because their body breaks, there is grief. You lose a part of yourself. It's a part of your soul that's still there, but you don't get to access it anymore. That's pain. And yes, there are other ways to dance than what I trained in, of course there are. People dance in chairs. People say that they can dance in their own heads and it's just as rewarding. And, you know, good for them. I can no longer stretch my limbs or support myself or run. I've lost an entire vocabulary; I think that's the main thing- there's a whole method of communication through physical expression and I've lost a language that at one time was my most fluent.
And then there was acting. That hurt a little less. But there's still seeing everyone I used to know auditioning and getting jobs, having shows, posting new headshots and promotional photos. I miss being on set. At least with that, there's still the hope that I could get back to it someday (far in the future) if everything works out just right. But I'd still be behind, you know? Everyone is moving forward in their careers and if I get back into it I'm basically going to have to start from square one. It's less of a visceral pull than movement, maybe more of an envy. A Little Mermaid style "I wanna be where the people are" moment.
But teaching. I miss teaching at least once a day, every day. Kids are the best. Working with them in art, science, history, theatre, dance, music, writing, honestly anything was the most fun every time. I loved it. So much. I also can't quite describe how tough it was to lose my ability to write on a board. I know I can't describe the heartbreak that came with the moment when a second grader asked me for help tying his shoe, and my tremor and arthritis had gotten so bad that I couldn't do it. What do you say to a sweet little face looking up at you for help with something that should be as simple as tying a shoe? I realized eventually that if there were an emergency, I wouldn't be able to take care of them. Not safely, anyway. And I was sick all the time, I caught every single thing that went around. And then the occipital neuralgia started. If you're not familiar with that, you're in for a treat. You've got two sets of nerves at the base of your skull- the major occipital nerves are toad the middle and the minor occipital nerves are toward the outside. What happens with occipital neuralgia is that for some reason (not necessarily anything you can pin down), those nerves get irritated and you feel like you're being STABBED IN THE BACK OF THE HEAD. Some people describe it as more of an electrical jolt, some people describe it as more of an ice pick. I'm in the ice pick category. It can happen in either the major or minor nerves, or both, and on either the left or right side, or both. I have bilateral major and minor occipital neuralgia. The pain usually lasts for about 15-60 seconds, goes away for a couple of minutes, and then repeats that pattern over a period of a few hours. Then it'll go away for several hours to a day and start all over again. That goes on for a couple of weeks to a month. Then the spaces between stabbings are longer for an indeterminate amount of time. The only thing that helps is occipital nerve blocks, which are going to get their very own post. In any case. These started happening while I was teaching. I'm sure you can imagine why being repeatedly stabbed in the back of the head with an ice pick wouldn't be conducive to a great teaching environment.
So I had to give it up. So I had to give it all up. I can't even do yoga anymore, which was my relaxing, grounding physical activity of choice because I can't feel when I'm overstretching or injuring myself. That was every activity in my life. And most of the friends I had came from those settings. It's not that I couldn't see them outside of those settings, necessarily, it's just that it kind of hurt. And I didn't want anyone to see me hurt or feel responsible for keeping me from hurting. It's also tricky to get together with people outside of a theatre or work setting if that's all you know them in, if you can't have alcohol or caffeine or gluten. Like, "yes, I'd love to come hang out with you all, yes I will definitely be sad the whole time, no I will not be able to consume any of the things you are consuming, but I will sip some water and stare at your food and beverages longingly while I bring the mood down and make very uncomfortable self deprecating jokes." Cool! That sounds awesome for everyone!
Being sick is isolating. The last couple of years have only highlighted that more. I'm sure everyone who knows me is tired of hearing me talk about the pandemic by now, but um, oh well? It's still happening? Those of us who are chronically ill or disabled have spent the last two years having to defend our lives as being worth saving over and over and over again. It's fucking exhausting. And it's disheartening. It sure doesn't make you feel like talking to anyone, that's for sure. Or at least it doesn't make me feel like talking to anyone. I'm just so tired of saying, "hey, we're immunocompromised, maybe having people who have just been on a plane without a mask mandate come stay in our house for fun is a BAD CALL?" Or, "hey, remember how the the vaccine isn't meant to keep anyone from getting Covid, it's only meant to keep you from getting severe Covid, which isn't really an option here because severe-Covid-and-probably-death is probably the only option regardless of vaccination status, so maybe we need to stop getting to lax with our rules right now?" Or, "I know other people are doing whatever they want to for fun, but that doesn't mean that we can." I'm so fucking tired of being that person. But it's better than dying or killing anyone else. And I wish that were exaggeration, but it still very much is life or death for so many of us. And watching the national rhetoric move so quickly to "if you're scared, stay inside" is...I don't know, I guess I don't really have a word for it. Did you know the lifting of the travel mask mandate was announced during flights? People took their masks off in the air. Zero regard for anyone who may have been flying because keeping everyone masked provided them the extra bit of safety they needed. Because, as we've been hearing for the last two years, no one cares if we live or die. Most of the time, a lot of people don't think about us at all.
Grieving is absolutely necessary. It's an important part of coping. If you don't recognize your grief, there isn't a great way to start moving forward. But I think it's also important to recognize that grieving is an ongoing process. It's not an activity to get through so you can get on with your life. It's something you need to process loss. But if you've lost something big, grief isn't ever going to go away entirely. It'll get smaller, hopefully. In my experience, it comes and goes in waves. Fighting it makes it worse. Accepting it makes it easier to figure out what I'm feeling. I think coping is really just another way of saying accepting and processing the grief. Finding a way to carry it that doesn't feel quite as heavy. Sometimes that means finding new activities. Sometimes it means relying on other people to help you carry it. Sometimes it means therapy. In a perfect world, we'd all find beautiful, healthy ways to cope with our grief. Obviously we don't live in a perfect world. We live in a world of invalidating our own grief, telling ourselves that other people have it worse or that we're being lazy or that we should just get over it and move forward already. Or we stay buried in the grief for a very long time.
I'm going to end this post here. I'm sorry that it was a little bit bleak. And I'm sorry if you're reading this and grieving or feeling isolated yourself. I'd like to tell you that it gets better, but I can't know that for you. I can tell you that it probably won't feel so bad all the time. Grief is a long process. It's not a bad thing. Just hard. Starting tomorrow these posts will get a little bit brighter, so that'll be nice! I guess!