Ashley Alexander
I got the chance to interview Ashley Alexander, a Junior in the school of Social Work. Ashley comes across very humble and hard working. She exudes a confidence and maturity level not typical of a 22-year-old. Ashley is exceptionally bright, poised and an advocate for people with disabilities. I was inspired to feature Ashley after I worked with her in a group project for Social Work & Disability Studies. She took the reins on creating interactive games that gave our class a window into a day in the life of having a disability. Ashley bravely and openly articulates personal stories and perspective to my class.
Ashley was born legally blind and faced a multitude of health scares during childhood. Ashley reflects back on what it was like growing up with a disability: “I never really felt disabled until I got sick. Part of this was due to loss of muscle function but also how others treated me. I had to start using a wheelchair because I couldn’t stop passing out and this wheelchair just threw people through a loop because it’s a symbol of disability, the true irony is that I was already disabled! So, this message basically told me, “Blindness is an acceptable disability, but your illness and resulting disability is not acceptable, fix it”. I cannot tell you how many times I was asked, “Are you better yet”, “When will you get out of the wheelchair” “How’s your treatment” “Why aren’t you better”. Unfortunately, with chronic illness, you don’t get better and a lot of people couldn’t accept that fact.”
After multiple fainting episodes in her teenage years, on December 18th 2012 her life changed for the better because she finally received a real diagnosis. She was diagnosed with Postural Orthostatic Tachycardia Syndrome. POTS is a form of Dysautonomia. Dysautonomia is an umbrella term that encompasses all forms of autonomic nervous system disorders. The ANS is the part of your brain that controls every unconscious function of the body which includes heart rate, blood pressure, breathing, digestion, sweating, etc.
Ashley also has some of the coexisting conditions caused by the Dysautonomia. She has Joint Hypermobility Syndrome (a disorder that affects collagen, the connective tissue that basically is the glue of the body). This causes her to have hypermobile joints, chronic pain, joint dysfunction of various degrees. In addition, she has Mast Cell Activation Syndrome an immunological condition in which mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic allergy type symptoms such as, itching, swelling, skin flushing and some people anaphylactic shock. Gastroparesis was diagnosed next after years of eating problems. This condition is partial paralysis of the stomach which loops directs back to a dysfunctional nervous system. Lastly, she has Fibromyalgia which is a chronic pain disorder that produces widespread pain. Ashley also suffers from bipolar disorder.
In terms of Ashley’s day to day life, she had to learn to adjust to life as a wheelchair user with vison loss. Ashley jokes that “I’ve ran off a few curbs and into a couple doors but I say that’s pretty successful all things considering.” Her mornings start off with a special gastroparesis friendly diet and her prescribed medications. Ashley’s days are filled with classes, working on group projects papers and “causing a little controversy with my wild ideas about social work” (she keeps her classmates on their toes!) Ashley receives a fair amount of help from her family because she can not drive and does not live on a bus route. In general Ashley talked a lot about how she has to sacrifice most of her body for school because by the end of the day she is exhausted. Ashley makes a promise to herself to do something fun at least once or twice a semester.
Ashley was open enough to share one of her greatest accomplishments with me. She said, “I got this tattoo to commemorate the fact that I am truly strong with all I’ve faced thus far in my life. This tattoo reminds me “Remember you will die, remember to live” as stated by the original Latin phrase. It’s a much more elegant way of saying Don’t let your disability/illness kill your spirit and live the best ability you can. The Rod of Asclepius is the Greek word for healing, surrounded by all the awareness ribbons that represent my disabilities.”
She also has a butterfly to represent her friend Dalia. This past May, she lost her fight with her chronic illness. “She was basically my carbon copy in regards to illnesses and symptoms. I met her through her YouTube channel early on in my diagnosis with Dysautonomia. She was the one who told me about the IV treatments I receive now and walked me through the port-a-cath process. She has left me with a wealth of knowledge to try and manage this set of conditions as best as possible. I owe the minimal functionality I have to Dalia and her willingness to talk about her battle. Otherwise, I may have never pursued and fought for IV infusions because doctors and insurance companies rarely approve the treatment.” Ashley also highlighted some of Dalia’s greatest accomplishments. She started an annual Dysautonomia/Gastroparesis awareness night in her hometown that keeps expanding every year, she started a company called Vials of Love reusing her medicine vials and creating them into art pieces and charms, she posted videos and pictures about her journey and created a small community of friends that deeply love her as much as she loved them.
Although Ashley faces chronic pain and fatigue, she wants to be a social worker more than anything…. “ I’ve sacrificed it all to be here. I am excelling with straight As up to this point and have made a few great friends along the way. Spending time with them in class while working on our course work. Just taking one day at a time. I felt so excluded from life for many years prior, but U of I gives me a place to have a purpose more than having an illness. I’m treated like a person. Most can finally look past my disability.”