cmaclaur

I have SPS and I’ve been either paralyzed, trying to rest or completely weak the last couple days. The overstimulation from the noise & vibrations from the 4th of July celebrations nearly killed me, I swear!! So I’ve decided to attempt to watch, “I Am: Celine Dion,” as she is a fellow sufferer of Stiff-Persons Syndrome. I notice a few things immediately, I have to watch the show on mute with subtitles because the sounds (even her voice) in the documentary trigger my spasms and cramps immediately. I have to close or cover my eyes through some of it because of the flashing lights and quick movements. Most of us with SPS get the IVIG (plasma infusions) treatment that is shown in the beginning. We all take the different sedative & immunotherapy **** (IF we are lucky enough), tailored to our specific symptoms. These fog our brains, cause other issues, and none of us have the exact same experience with the illness or the treatments. The one thing that we do all experience is the progression of the illness and the loss of the effectiveness of the treatments. The autoimmune conditions start to add up, once you have one, you start getting more. Your body decides it’s going to kill itself. I see her dog. I bet she has someone there to feed it and let it out when she can’t move. It breaks my heart some mornings when I stare at my pup, and just have to tell her, just another half hour, girl, then I’ll hopefully be able to get you outside/feed you. I note her despair for the loss of being able to perform, to watch her dreams, passions and abilities slip away. I know this feeling well, as does everyone with SPS. It’s absolutely heartbreaking. Breathing does feel like you’re wearing a corset, except some of us have conditions where our involuntary muscles are affected as well. So our lungs don’t work as they should. Then breathing becomes terrifying, not just painful. I’m happy to see that she is able to walk to steadily; I’m constantly a ping pong ball bouncing off furniture, walls, horses and horse stalls. I’m guessing that she has days like that, too. We all suffer, I’m glad she was able to create this documentary to shine some light on the topic. I do believe though, without taking away from her pain, that there should be a documentary called, “We Are Not Celine Dion,” for the rest of us who fight with a whole other list of issues. The are thousands of us (this is a collective list of things I see in support groups) who don’t have money, a way to make money, have to fight with medical insurance companies, Medicaid, Medicare, Disability, live alone, have families that desert you, don’t have families to begin with, don’t receive adequate medical care, are ignored by doctors, don’t have the whole world rooting for them, don’t have the best doctors, specialists, physical therapists, rides to appointments, drivers to the grocery store or the pharmacy, medical professionals that come to your home, someone who cleans your house, poolside loungers to sit on, someone bringing “milkshakes” or food, “people waiting in line for your apples” that they pay a lot of money for… ?!?, sports medicine doctors to stretch your body, move you back into place, run to your side & hold your hand/rub your back/offer more meds when you have a paralytic seizure - the majority of us seize on the ground until our body lets up on its own, usually after about a half hour. She doesn’t know what it means to be, “All by Myself,” luckily, I don’t either, but some do. It’d be nice to cast a more realistic view of the struggles of SPS. Because most of us are not Celine Dion.