When I was only two and a half years old, my parents received the news that their precious ‘almost normal’ baby, (I was not able to walk without holding myself to something or I’d fall), was never going to walk because she suffered from a Neuromuscular condition called Spinal Muscular Atrophy, type II. A scary diagnosis when you google it, it's presented as an illness that will kill you by ‘adolescence or young adulthood,’ according to the main website you are directed to.
Recently, the “terrible condition” has been featured many times in the media. In Canada, Julia Lamb (25) is a patient who was diagnosed with it and has used a wheelchair since she was 6 years old. Lamb is advocating for her country to approve the law of assisted dying, in which at the moment she gets tired of living, someone can medically end her life. Not too far from that situation, a girl named Jerika Bolen (14), a SMA patient from Wisconsin, has taken her decision to the point of no return. She has decided (supported by her family and friends) to quit any treatment for her continuous pain and breathing problems. The complications of the condition, caused by over 30 surgeries in her lifetime, pushed her to end her short life.
Currently, Spinal Muscular Atrophy is being perceived as an illness worse than death, but as everything in life, a coin has two sides and I happen to be on the opposite side. SMA has taken a lot of who I am as an individual. There are times where my spirit wants to kick and scream of excitement, but my body falls short, leaving me with only a smile and a soft, ‘Yay.’ As an artist, I wish I could be able to paint a mural and not the usual 11” x 14” canvases I paint on because my arms can’t lift above my eyes. Of course, the most frustrating part of it is the need of someone else to help me do the basic things in life. Life is not easy with a neuromuscular condition as SMA. Still, I can assure the world that it can be bearable and even enjoyable as any other human being. Luckily, I am not alone on this side.
Emily Wolinsky (39), a woman diagnosed with Spinal Muscular Atrophy at 18 months, founded the cross-disability project, "Thanks For Letting Me Live". In her own words she, “recognizes that as disable adult, she no longer needs to be worried about someone “letting” her live her life, but understands that the sad fact that, as a child, her destiny rested in other people’s hands.” Hands that could have institutionalized her, pulled off life support, refused treatment, abused her, or worst of all, murdered her. In the project website (thanksforlettingmelive.com), Wolinsky explains that, “Every single day, children with disabilities are facing serious danger due to stereotypes, stigma, misinformation and poor journalism. Thanks For Letting Me Live recognizes that sad reality and hopes to change false perspectives and stereotypes with the voices and stories of the disability community leading the conversation." The project has been active for about a week, but the support of more than 200 persons who has liked it on its Facebook page, shows that there is a wide community of people with disabilities that are grateful for their lives and have learned to make the best of what they have.
Another similar project is called Project Value. This one was originated by a group of friends living with neuromuscular conditions who wanted to respond to the mischaracterization of Spinal Muscular Atrophy the media is portraying with cases such as Lamb and Bolen. We share one common purpose: to say something different. Project Value already has more than 1,700 likes on its Facebook page, where videos of people with SMA gives testimony of their accomplished lives. Groups like this are helping people with disabilities to accept the challenges and face them without the fear that the misconceptions create in the spirit of people like me.
(Yarianna Ledger)
Spinal Muscular Atrophy is not the horrible disease you can deduce by the actions of a minority group. Struggles are part of anybody’s lives and we learn how to manage them. I was able to go to college not once, but twice, graduating with a Masters Degree in Art History, work with multiple painting collections and move in with my boyfriend among many other things. My story is not a miracle; just as me, there are many other individuals who are currently in their adulthood facing life as functional community workers, supermodels, husbands, wives, or parents.
I have Spinal Muscular Atrophy type II, I am 25 years old and today I am lucky to say I live a painless life, full of love and dreams to reach. I do not want to die, that will come when the time is right. In the meantime, I will keep enjoying cemeteries as beautiful places to visit while I'm still breathing. A neuromuscular condition is a part of my life that can change the way I move but not the way I think.
