How Meditation Helps Me Deal with Disability Grief

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

I realized that meditation is essential for my well-being as a disabled adult. Simply put, I have depression due to grieving my disability and meditation helps me cope. For me, disability grief comes from living in a world that is not built with disabled people in mind. Nobody talks about this, but it is certainly necessary. It’s an important part of my life as a person with a disability that is very difficult to explain to my non-disabled friends and loved ones.

I have come to realize that having a disability can be a very isolating experience. Yes, there are ways to find friends and create a support network of other disabled people. Still, sometimes I feel like I live a double life. I am a different person when I am out in the world than when I am at home with my family or managing my assistants and caregivers. That’s where isolation comes from. Sometimes those people who, by necessity, are the closest to me because they are in charge of my daily care are the ones who understand me the least.

My mom recently commented that she had no idea that having a physical disability meant I would also experience psychological and emotional difficulties. I have realized that although she is a doctor with a bachelor’s degree in occupational therapy and a master’s degree in rehabilitation medicine, that does not mean she has the experience of living with a disability. I want to get mad at her, but I can’t. There’s no way she can know what he’s really like.

It’s hard to say exactly where disability grief comes from. Really, anything can cause it. When my non-disabled twin sister got married, her wedding was a roller coaster ride for me. Watching her walk down the aisle before I had my first kiss and watching her slowly dance with my dad, realizing that I could never have the exact same experience, made me nauseous. Don’t worry, I now realize that those cases were caused by the joint forces of internalized ableism and a lack of understanding that when you have a disability, milestones often occur at different times and look different than those. of people without disabilities. I’m working on it and now I know better. Still, those two made a pretty toxic couple.

The other main cause of my pain from my disability is feeling like I’m not in control of my own life. When you live and work with the same caregivers you have had since childhood, they tend to see you as the child they started working with and it is difficult to affirm yourself as an adult. Sometimes it’s hard to know if I can ask for certain things, like staying up later if my caregiver needs to get up early the next morning. Other times I feel the need to take care of my care assistants. Given all of this, I often feel like I’m being pulled in multiple directions and am afraid of getting lost in the process.

I have tried many remedies for my depression, with varying degrees of success. Psychotherapy is necessary, but sometimes it takes too long. I also dedicated myself to 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 he had tried it before, he was not a fan of having to remain absolutely still. Anyone who has spasticity knows what it’s like to go to physical therapy and hear him say, “Just relax.” Every time I hear this I think, “If I could just relax, I wouldn’t need to be here.” However, I decided to give meditation another chance. And I love it. First of all, my instructor believes that my spastic movements are just expressions of tension in my body. This may seem blatantly obvious to those of us with disabilities, but unfortunately your acceptance of my spasms is novel.

More importantly, I can’t believe all the repressed memories meditation brings back. Virtually everything centers on medical trauma: being left on a hospital toilet late at night as a toddler; receiving anesthesia but having no idea what the surgery really was. I thought I had made peace with this, but clearly I haven’t. The best part, though, is that at the end of each meditation, my instructor repeats, “It is safe for you to feel.” Considering that my disability forces me to spend a lot of time worrying about others, it’s a huge relief to know that there is 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 I need to feel like a human being. The truth is that I don’t know what that will be like. Growing up disabled made it difficult for me to put my needs first, so I’m a little nervous, but sometimes nervousness can be a good thing. I will report as the process continues. For now, I just feel relieved. And I want to celebrate the fact that “it is safe for me to feel.”