Whenever I would hear someone say, “I don’t even see you as disabled” or “It’s so cool I forget that you’re disabled,” I considered that a huge compliment and felt like I was truly winning at life. I didn’t understand why being disabled was something that needed to be overlooked and forgotten, but I sensed that this was important in order for me to be accepted, so I felt proud of my ability to hide the reality of my disability.
Little by little, comments like these began to pile up, and over time, I became less and less comfortable with myself. The confusion was palpable. It was impossible for me to put into words why something I considered a compliment left me feeling so bad about myself. Underneath, I wondered what was so awful about being disabled that people couldn’t just accept me as I truly was. I worried that, if someday my disability became too obvious to them so they couldn’t pretend it didn’t exist, they might not like me anymore.
It wasn’t until my mid-thirties that I figured out that although I believe it was well-meaning, telling me they don’t see me as disabled is not a compliment. Going through the process of figuring out who I was in a world that I didn’t feel I belonged in was a struggle. While brutal at times, the struggle provided growth opportunities that helped me become comfortable and secure in who I am and the space I occupy in the world.
Sharing our stories gives us so much power and potential to help others. My intention in creating this website is to share my stories about staying centered and grounded in myself through the oppression, exclusion, and marginalization I experienced (and still do experience) and remember who I am in a world that doesn’t often value my disabled existence. My hope is that it will offer a spirit of friendship to others who have gone through or are going through similar experiences.
Eventually, you will find stories about a lot of different topics on my website. Below I’ve listed a few.
When I was six months old, my parents received my diagnosis of Spinal Muscular Atrophy Type 2 and were told I wouldn’t live past the age of five. Three and half years before this, my older sister was diagnosed with the same disease and given the same death sentence. This was in the 1970s. My sister returned to heaven in 2016 at the age of 45, at the time of writing this, I recently turned 48.
Together, my sister and I learned how to survive in a world that wasn’t designed to be welcoming to us or our wheelchairs. Most public places, including schools, weren’t accessible to us, and when we did go out, people stared and stared and stared some more. The message that we didn’t belong in the world was loud and clear. We understood things were probably going to be this way forever, so like a lot of people with disabilities, we developed almost superhuman levels of adjusting and adapting to all of the obstacles in our lives using extreme creativity.
I was around twenty years old when the internet became available, and the world opened up to me. I met hundreds of other people from around the world who also had SMA. Hearing the stories of people struggling with the same physical, social, and accessibility issues that I was created an instant bond, and many of these friendships continue to flourish. Learning that the oppression was universal and not personal helped me relax into my life and who I was in the world.
I met my husband almost 30 years ago. I can now laugh at the younger version of myself that believed that, once I found my soulmate, life would be perfect, and the road to happily ever after would magically fall into place, with no bumps, twists or turns, and requiring no work from us at all. While I have a happy and strong marriage, it didn’t magically happen. Although my husband is a saint (haha, that’s a joke some of you will get), it took— and takes—a lot of real work. Being I have a visible disability and my husband is nondisabled we’ve had many unique experiences over the years. I intend to share stories about some of those unique experiences and how we’ve successfully made our marriage work through it all.
Losing my sister, the only person who understood life as I know it, was earth-shattering, to say the least. Facing the reality that I now have to navigate every area of my life without her still overwhelms me. When I was in the darkest place of my grief, I couldn’t find any shared stories written about this. It made an incredibly horrible experience even worse. I plan to write about my experience with losing my sister to share what helped me survive the loss and hopefully help others dealing with losing a sibling not to feel so alone.
Living a healthy lifestyle is a passion of mine because I believe it’s my responsibility to respect and take care of the body I’ve been given, and I’ve experienced the positive difference it can make in my overall health. To me, healthy living means finding the balance in life to be able to treat my body, mind, and spirit well. I’m far from perfect and definitely don’t have it all figured out, but I try my best to make what I believe are the healthiest choices for me. I’m not attempting to tell people what to do, I’m just sharing what has worked for me in case it might help you too.
Inventing my own healthy recipes or modifying ones I’ve found is a hobby of mine. I look forward to sharing some of those recipes with you and hope you love them as much as I do.
A Note on Comments
Mostly, I love reading content created by other people with disabilities, but I try to avoid reading the comments section. Sometimes despite my best efforts, I will come across a shockingly horrible comment about disability that I haven’t heard before, and I leave feeling worse than when I got there. I never want my readers to have to deal with that, so I don’t have an open comment section.
I hope you will feel my website is a comfortable place where you can come and receive solidarity without being subjected to a potentially unpleasant comments section. If my stories prompt you to share your own or you have a comment or question, please feel free to email me.