By Valerie Rice | October 18, 2020
When most of us hear the term “disability” we envision wheelchairs or some sort of visual representation signifying illness. This, unfortunately, is not always the case. I say this is unfortunate because many people suffer from chronic illness and discrimination because they do not “look” disabled. I am lucky enough to be one of those people. My illness is called Ehlers-Danlos Syndrome, or EDS for short. It is a genetic mutation for which there is no cure. It affects all of my connective tissues and results in constant pain as well as dysfunction in my heart, lungs, and brain. Sounds fun, right? But I look so healthy! Yes, and young, too. Much younger than I should. How old am I? Well, how old do I look? (HINT: I have given birth to at least 1 legal adult) All part of the package, thanks. So I’m going to give you a glimpse into my daily life.
Good morning! It may be anytime between 3 a.m. and 7a.m. The time depends completely on the weather. Literally. The barometric pressure determines the amount of pain in my rapidly degrading joints and how strong my muscle spasms are. Cool, right? That’s a bit of science for ya. Regardless of wake up time, the first barrier is making it to the bathroom. Most people just get up and go. I cannot. Because my muscles refuse to cooperate, it is a battle lifting my meat puppet from my bed and hauling it to the toilet. Once I get it upright, I have to hope that I don’t lose consciousness. My heart and brain do not communicate, so passing out with no heartbeat is pretty standard. (Don’t worry it gets better.) I grab the wall and inch my way along, tottering on feet that feel as if they are full of glass shards, hoping my knees and hips don’t dislocate, until I make it to the bathroom. Once I make it, I have to convince my body to obey urges and eliminate waste properly before staggering back to my bed. At 7a.m. I take my meds. If I manage all this, I rest for 40 minutes while the medication kicks in and I can move like a human.
None of that sounded great. So how do I handle this? I have a waterproof mattress cover in case I can’t make it to the toilet. I have a big dog to keep my head from hitting the floor. I have a super cool toilet seat that keeps me from dislocating joints. I have mini catheters to help when my body won’t comply because my organs have prolapsed. And we haven’t even tried to shower yet! (which I can’t do by myself, standing is not allowed.) So now what? I have help. I can’t afford a personal care nurse, so I have a good friend help me bathe and wash my hair as well as dress. Attempting to put a shirt on alone is dangerous; it can dislocate a shoulder and tear tendons. All this hullabaloo takes hours, so now it is time for…you guessed it…more medication! Ta-DA! Now, If I need to work, be it on my laptop or around the house, I have various braces and supports for my joints to help hold me together. Being the stubborn woman that I am, I refuse help on many things, so I go about my day as independently as I possibly can, and hope I do not hit the floor.
LEAVING THE HOUSE
I try not to. I am considered medically fragile, so being around people, especially in the time of the pandemic, is life threatening. BUT. I have numerous doctor appointments that require in- person attendance. So I take a third dose of medicine, grab my rescue inhaler, blanket, and walker, and head out the door with my dog. The blanket is necessary because my body does not regulate my temperature well, and I am always at a healthy 95 degrees Fahrenheit. I am no longer able to drive, and I can’t afford personal transport, so we hobble along to the bus stop. Usually I leave an hour before an appointment in case of an incident, settle down to wait for the bus. After arguing with the driver that my dog is in compliance with ADA regulations, and possibly being forced to wait for the next bus, I will get to my appointment in excruciating pain, suffer through it, and repeat the process to get home. At home I may or may not remain conscious due to stress on my system.
Time for more medication! YAY! Urgh. Okay, so you may have noticed I take a ton of pills. I have difficulty swallowing because I am super stretchy, and I choke on medicine, food, and water regularly. My diet is pretty limited because swallowing anything is painful. Have you ever felt your insides stretch out of shape to accommodate a liquid? It burns all the way down and feels like you are shredding your esophagus. Anyway. After gulping down my delicious life saving medication, I sit in the kitchen on a swivel stool to prepare dinner for my children. They are all teenagers and they LOVE to eat. The tastier the better. Thanks to my genetic contribution to their makeup, I have to dice everything very small or they, too, have difficulties with it. Luckily, they are still young and have yet to develop as many problems as I have. By this time I am too exhausted to do anything else, so I delegate cleaning up and crawl into bed. Literally. And take my before sleep medicine. If I am lucky, I will even get to sleep, a pillow between my legs and behind my back, and a shaped one to support my damaged neck.
Doesn’t this sound like a lot of fun? No, but it definitely isn’t boring. The best part is, this illness is not just physical. It also affects my mental health. For more on that, click here. And, thanks to being faced with my inevitable demise on the daily, it causes PTSD. Want to learn about that? Click here. Somewhere in this lovely clusterf*k of a day I get to writing and dealing with my 4 special needs kids, their education, their appointments, and so on. Which is why I learned these little tricks. And I do not look disabled. Many times, I leave the house without my walker, because it is not necessary. At all. As difficult as it may be, trying to imagine people like me as disabled can be impossible unless you see my life behind closed doors. My serious condition comes with some serious pride issues. Thanks to the overactive mind and underactive body, I often feel trapped in a world of limitation and frustration. Please try not to judge too harshly, people like me are so very good at that already. Cheers to the invisible disabilities!