The balance between grief and pride in being disabled

Hi! This is a topic that I feel strongly about in my life, so I'm glad to have the chance to articulate it in a blog post, and I know other people can relate to it as well. I think able-bodied people just truly do not understand how you can feel pride in having a disability, just as they don't understand why we would "give in" by using a mobility aid. But there's a different feeling within the disabled community. A feeling that while we wouldn't have chosen this life, we're going to make the best of it, it's a feeling I embrace as well, and I encourage you to do the same.

Once you realize, especially if you have a dynamic disability as I do, that some days are going to be really hard and sometimes things will be easier, some days you can trust your body to let you do things, while others you cannot, there's a lot of joy that can come from recognizing that. I recently started going on walks in my neighborhood again, which is something I hadn't done in months, because I had a flare-up, and because I wasn't really exercising, I lost any muscle mass I had. Everything was so hard, but since I started going to physical therapy, I've gotten stronger, and I've started walking again, and I find so much joy in it. In the past, walking was just something I did; now I feel so much happiness to get to walk and be in the sunlight.

There's also the aspect of community going on Pinterest or other social media, and connecting with people who understand you and make you feel seen. While getting a diagnosis, especially for something incurable, is really hard, finding people who get it and understand is something that I didn't really experience as someone seeking a diagnosis or before I became disabled. So that's the pride: putting in the effort, getting stronger, taking care of yourself, allowing yourself to take breaks and not pushing yourself all the time, giving yourself grace, finding a community, all of that is close to my heart and has grown me and helped me to embrace my disability.

Even then, there's still grief, and there always will be. Grief isn't something that ever goes away; it fluctuates. I won't wake up one day and say "okay well now that I've got that done [grief] lets get back to life" it's something that will always be a part of me and my journey as I grapple with the loss of a body that fully functions, of freedom in what I can do and for how long, missing out on experiences, not knowing how I will wake up feeling, being misunderstood and written off and told I'm exaggerating. I won't ever "get over" that. Still, I'm giving myself permission to grieve because this is an acceptable response to what's happened to my body in the past couple of years, and it will get easier and it will get harder, and my body might get stronger or it might get weaker. I don't know the future, but I know that I can find joy in the small things and that I have a community behind me supporting me. When it feels like no one gets it, they do.

Grief isn't linear; healing can feel nonexistent when you have an incurable disability. My body will never be the way it was before, as easy as it to say and as hard as it is to implement stop looking behind that will get you nowhere instead of saying "I used to be able to do that and now I can't so I'm not going to try" try reframing and saying "I can't currently do this, is their a way I can make this accessible to me? If not, what is something else I can do instead?" It's going to be hard; no one said being disabled would be easy, but we're in this together.

I want to share a quick story, and then I'll send you on your way. Here it is: I used to go hiking with my dad, and sometimes my aunt, a lot, and it was something I always enjoyed, sometimes more than others. Beginning a couple of years ago, I wasn't able to do that anymore as my condition began to disable me, and it was really disappointing losing hiking and also other things like riding my bike, walking with my dad, and walking to the library, things that had brought me a lot of joy in the past. And so about 2 months ago, I started physical therapy, and it can be hard being in a space where you're trying to build muscle and gain strength, when it's muscles and strength you used to have. It's easy to remember how those exercises used to feel, and now you're really struggling with them. I try my best not to think those thoughts because instead of being negative, I can be positive, and beyond that, I can motivate myself to try my hardest and put work into my exercises. You know what's kept me going: doing my exercises each day, asking for stronger bands to use at PT, and going for walks.

Wanting to go on a hike. That's been my goal this whole time, all I want is to go on a hike, I've really missed it, I want it so bad, not like I wanted an iphone, or to win a spot in the YPL program or like how I want to get A's I want this deep in my bones, I want it with a burning passion. I won't give up, not when this is on the line, even if my hike doesn't look the way it used to, if I start shorter, if I need to take breaks, if I need to use hiking poles or other mobility aids. I want this for myself, and I will get it.

So I encourage you to find something that keeps you going, find creators on social media not that make you feel insecure but to show you the good and bad of being disabled, push yourself gently and learn about yourself, know what you can do and what's too much and honor that and most of all love yourself and find something to keep you going. For me, that's the prospect of hiking again. For you, it might be something else. When everything feels dark, it's so, so important you have an anchor.

With Love, Ruby Sophia <3