How Meditation Helps Me Deal with Disability Grief

I have spent the past decade slowly but surely morphing into an affluent white woman. Tickets to the Metropolitan Opera at least once every month during the season? Check. Living with my family on the Upper East Side? Check. And, I just started meditating. Yahtzee! Before you think I’m going to start selling jewelry on Etsy and eating avocado toast, let me just say I started meditating not to “manifest my best life,” but to deal with the complexities of disability grief.  

I’ve realized that meditation is indispensable to my well-being as a disabled adult. Simply put, I have depression due to disability grief, and meditation helps me deal with it. For me, disability grief comes from living in a world that isn’t built with disabled people in mind. Nobody talks about this, but we certainly need to. It is a major part of my life as a person with a disability that is very hard to explain to my nondisabled friends and loved ones. 

I have grown to realize that having a disability can be a very isolating experience. Yes, there are ways of finding friends and creating a support network for yourself that consists of other disabled people. Even so, I sometimes feel as if I live a double life. I’m a different person when I’m out in the world versus when I’m at home with my family or managing my aides and caregivers. This is where the isolation comes from. Sometimes those people that by necessity are the closest to me because they handle my daily care understand me the least.  

My mom recently commented that she had no idea that having a physical disability meant that I would also experience psychological and emotional hardship. I’ve come to realize that even though she’s a doctor with a bachelor’s in occupational therapy and a master’s in rehab medicine, it doesn’t mean she has the experience of living with a disability. I want to be angry at her, but I can’t. There’s no way she could know what it’s truly like.  

It is hard to say exactly where disability grief comes from. Really, anything can set it off. When my non-disabled twin sister got married, her wedding was a rollercoaster ride for me. Seeing her walk down the aisle before I had my first kiss and seeing her slow dance with my dad, realizing that I would never be able to have the exact same experience, made me nauseous. Don’t worry, I now realize those instances were caused by the joint forces of internalized ableism and a lack of understanding that when you have a disability, milestones often happen at different times and look different than they do for nondisabled people. I am working on it and know better now. Still, those two made quite a toxic pairing.  

The other main cause of my disability grief is feeling like I’m not in control of my own life. When you live and work with the same caregivers you’ve had since your childhood, they tend to see you as the kid they first started working with, and it’s difficult to assert yourself as an adult. Sometimes it’s hard to tell if I can ask for certain things, like staying up later if my caregiver needs to get up early the next morning. Still other times I feel the need to look out for my care assistants. Given all this, I frequently feel that I’m being pulled in multiple directions and I’m afraid of losing myself in the process. 

I have tried many remedies for my depression, with varying degrees of success. Talk therapy is necessary, but sometimes it takes too long. I’ve also taken up boxing. Once, I might have joined a cult for a weekend (more on that later). Finally, an opera singer I know told me she also teaches yoga and meditation. Although I’d tried it before, I wasn’t a fan of needing to stay absolutely still. Anyone with spasticity knows what it’s like to go to physical therapy, only to hear them say “Just relax.” Every time I hear this, I think, “If I could relax, I wouldn’t need to be here.” Nonetheless, I decided to give meditation another go. And I love it. In the first place, my instructor believes that my spastic movements are just expressions of the tension in my body. This may seem blatantly obvious to those of us with disabilities, but her acceptance of my spasms is unfortunately novel.  

More importantly, I can’t believe all the repressed memories that meditation brings up. It’s pretty much all centered around medical trauma: being left on the hospital commode late at night as a toddler; getting anesthesia but having no idea what the surgery actually was. I thought I had made my peace with this, but clearly, I haven’t. However, the best part is, at the end of every meditation, my instructor repeats, “It is safe for you to feel.” Considering my disability forces me to spend a lot of time worrying about everyone else, it’s such a relief to know that there’s at least one thing I can have for myself. Honestly, the first time I realized this, I cried. 

Ultimately, my instructor’s goal is to help me find a way to give myself the space that I need to feel like a human. Truthfully, I don’t know what that’s going to look like. Growing up disabled made it difficult for me to put my needs first, so I’m kind of nervous, but sometimes nervousness can be a good thing. I will report back as the process continues. For now, I’m just relieved. And I want to celebrate the fact that “It is safe for me to feel.”