Mel Rising Dawn Cordeiro
We have had some great articles this year related to disabilities and ableist culture. I have yet to share my story, and due to the strength exhibited by our staff writers, I am encouraged to share my disability as well. This is part one of a two part series. Today, I will focus on the physical aspect of my disability. No doubt, I stand out on campus. To my knowledge, I am the only one who uses a Canadian crutch, the type of crutch that holds on to your wrist. Mobility is a huge part of my disability. I can go short distances without my crutch, but distances are a problem.
What I have is not typical of a college student, though anyone at any age can get it. It is more common in women than in men, and scientists and doctors still don’t fully understand this disease. Experts are unsure what the specific cause is, though it is thought to be triggered by stress and trauma. What they do know is that people with this disease feel pain constantly. This disease is characterized by chronic, consistent pain throughout the entirety of the body, pain “hot spots” where the pain is worse in a few particular areas, extreme fatigue, stiff and tender muscles and joints, sleeplessness, heightened sensitivity to weather, noise, smells and lights and the always fun brain fog, among other symptoms. On top of this, I have plenty of additional medical issues caused by this, such as chest pain and bowel troubles.
I have fibromyalgia. Having this means that I am forever in constant pain. Simply put, I like to explain fibromyalgia as a nervous system issue where the brain does not understand how to shut off pain impulse signals. Personally, there are times when the pain eases and there are times when I cannot get out of bed. I started noticing my symptoms about 5 years ago, though upon reflection I have always been symptomatic. My doctor and I are certain that in my case, it was caused by physical abuse.
My pains can range anywhere from a simple achy feeling up to and including an internal burning, itchy feeling. Hot spots include the front of my thighs and my shoulders, where I took a majority of the beatings I was issued. I have points along my back and hips as well, with my hips being the worst, but in all reality, I am never not in pain. The pain in my thighs and hips especially causes mobility issues and extreme sensitivity. I am very sensitive to any fluctuation in temperature, both extreme heat and cold, as well as wind and any type of precipitation. I am very touch sensitive. I am a physical person and love hugs from my friends and family, but the reality of it is that some days the sensitivity is too intense to wear pants. The fatigue is awful and often I need to incorporate nap time into my day. Sleep usually evades me, but my body will always tell me when it is time to rest. I have brain fog as well, but that will be a topic for another time, as the resulting brain fog really is in a category of its own.
There is no cure for fibromyalgia. Fibro patients can make use of pain meds such as Cymbalta, an antidepressant medication that aids in blocking pain receptors, and anticonvulsant medications such as Gabapentin and Lyrica. In fact, these medications are the only three approved for use with fibro patients, outside of narcotic and opioid pain medicines.
Disability services have no idea what to do with me, and honestly, some days I don’t know what to do with me either. Sitting at a desk or in a lecture hall seat is very difficult. Concentrating on the materials presented in class is impossible some days. Driving is difficult. Taking a shower is a chore. Everything I once took for granted is now difficult or I need to have someone around to help.
I am currently a CNA, well underway to becoming an RN, however my fibromyalgia may not allow me to finish nursing school. I have always taken care of other people, and coming to the realization that I may not be able to do the one thing I’ve always wanted to do makes me sick to my stomach, but my love language will always be acts of charity.
Please, don’t take anything for granted. The fact that tasks can be done unassisted or unsupervised is a blessing. I would love nothing more than to trade a day of no pain for being “normal,” to have the ability to walk unassisted, to slide down a railing, go to the movies with my boyfriend or walk my dog without being hit by the fatigue freight train.
My hope, dear reader, is that through reading this, you have gained a small understanding of this invisible illness and will be patient with those who have it. I love my friends dearly, but I don’t always have the energy to keep up.