Writing, like painting or any other creative outlet, can be therapeutic. I know that I can be an extremely private person. Travis has had to tell me numerous times not to shut him out. Not to let the hard things and the emotional things to keep me from investing myself into those around me. It can be difficult to share those things when they are dark and ugly.
Disease is dark, it is ugly and twisted. It is mangled branches and fungus on the bark of trees. It is musty. It is gruesomely honest because it has to be. Once it is acknowledged, it will forever define a part of your life and your heart.
Being diagnosed with a disease sets you a part in many ways. It forces you to grow up quickly, to know yourself, to analyze and assess yourself. It can be liberating for some; they live their lives to the fullest because they do not want to hold regrets. It can be a prison sentence for others; fearful of every step they make… fearful of the results of the life they lead. It is difficult to talk about, and it is even harder to express the complex emotions that come with learning to manage not only your daily life, but your past and your future plans.
I’ve been drafting this letter for awhile now. I don’t think I’ll ever send it on, but I needed to put words to my experience.
My name is Kait Stockwell, graduate of Gordon College class of 2012. I am writing to express the depth of my concern for my Alma Mater as a Christ-centered community that supports the needs, both visible and invisible, of its students.
I was 10 years old when I was first diagnosed with a chronic neuromuscular autoimmune disease. Myasthenia Gravis is a disease of the immune system that inhibits the neuromuscular junctions, a necessary part of the body which allow muscles to respond to brain stimulus. In people with my condition, the body produces antibodies that block the muscle cells from receiving messages (neurotransmitters) from the nerve cell. Symptoms can range from barely noticeable to severe, and I have experienced the whole gamut. Typical indicators include headaches, blurry and doubled vision, difficulty maintaining a steady gaze, difficulty chewing and swallowing, difficulty talking, hoarseness or changes in voice, weakened chest wall muscles, difficulty climbing stairs or lifting objects, generalized weakness of all voluntary muscles, and extreme fatigue and exhaustion. The cause of the disease is relatively unknown, but “Myasthenic Crisis” or relapses can be brought on by environmental factors and physical and emotional stress on the body.
After medications, endless testing, major surgery and modified schooling, I was able to return to a relatively normal life at 16 when I first began showing signs of remission. I was declared in full remission at 17 as I started my freshman year of college. It was the greatest relief of my life. On my 18th birthday, just a few weeks into this new healthy life, I had my industrial piercing done. It was something I had wanted for a long time, but my temoltuous relationship with needles because of my healthy made me afraid to do it; too many collapsed IV’s, blood tests, diagnostic tests. But when I found out I was in remission, I was set free from that fear. The piercing was a reminder to me of God’s grace and faithfulness in my life. Fear didn’t need to control me anymore because my condition didn’t control my life anymore. I relapsed during the fall of 2012, my junior year at Gordon.
Trying to manage a chronic illness while in college was extremely difficult. I lived in the Dexter House during my junior year, and had to take a 7-week leave of absence to receive treatment at home. When I was declared disease free, I left that part of my life back home. No one at school knew my health history. It was so difficult to explain to my friends and my housemates that I was once again becoming a prisoner to my body. I was no longer responding to my prescribed medication, and my disease was prohibiting me from leading a normal and active life at school. My professors were gracious and allowed me to work from home and finish the semester’s work over Christmas break. During my time at home, I began Intravenous Immunoglobulin Infusions to manage my disease while we tried to find a new treatment plan. IVIG helped me feel better, but came at a high cost. I suffered from extreme and debilitating migraines caused by the interaction of my antibodies with the donors’ antibodies. I received support and prayer from professors, friends and classmates. I am so thankful for their flexibility and understanding as I continued traveling between Gordon and home for monthly treatment during the spring semester of 2011. Many of my papers and assignments from that year were completed from a hospital bed in the day clinic at DuPont Children’s Hospital.
My doctor noticed a link between the decline in my health and my living situation at school. The inciting incident of my relapse had most likely been a knee surgery that took place just a few days before returning to school. However, it was my decision to live in the beautiful and historic 1800’s farmhouse that caused an extreme continued immune response, most likely to mold. Towards the end of the spring semester, my doctor requested that I move into a new construction building as I began to have escalating Myasthenic reactions to the Dexter House.
My housemates, my professors, the Carmer’s and the head of housing were all accommodating, flexible and understanding of my situation. I was assured that Gordon would not allow housing to jeopardize my health for my senior year. After all of this, my doctor requested that I be placed in a Tavilla Hall apartment for my senior year to meet my growing health needs: newer construction, a clean environment for potential in-room IVIG and Myasthenic treatment, and roommates who knew and understood my situation. I met with the head of housing, brought documentation and a letter from my doctor, and included an explanation in our application.
I was thoroughly discouraged and disappointed with the way in which the Center for Student Development handled my situation. In the midst of maternity leave, my medical issues were left to a student who worked in CSD to decide whether or not they were valid. My doctor’s request and my detailed history of health and needs were ignored. My friends and I were awarded an apartment in a building that I had already had numerous Myasthenic reactions to. When I reached out for help, my needs were met with silence. CSD had no solution for my situation and explained that with so many people faking medical requests, they could not take mine seriously. After several weeks, multiple emails, a few meetings, and phone calls from my parents, CSD still refused to accommodate my needs. I was left to decide if I would be willing to risk my health and my senior year of college to live where CSD decided was appropriate for me. I was at the point of deciding whether or not I would return to Gordon to finish my degree. By the grace of God, one of my friends, who had been awarded an apartment in Tavilla, requested that our apartment assignments be switched so that I would be able to live in a healthy environment for my condition.
The administration’s response to my health was nothing new to me. After a decade of illness, I have had to continually fight to be heard and to be taken care of. I have had doctors tell me to “suck it up”, I have had pharmacies not want to stock my expensive medications, I have had insurance companies make empty promises, and the most difficult were the friends and family who have not been able to understand the severity of my disease because I look healthy. One of the blessings and curses of Myasthenia Gravis is that to those unfamiliar with it, I do not look sick. Only my closest friends and family see the subtle changes that manifest themselves physically when I am not feeling well. I truly believe that if I had a chronic illness that manifested itself obviously in physical appearance, I would not have been denied the help that I need to manage my disease while at Gordon.
The Lord has blessed me with patience and understanding through my illness, but he has also given me a heart of service, a heart for justice and a heart for others. I am not writing to condemn the administration for their actions or lack there of, but to bring to light an issue that needs to be addressed within the Gordon Community. Chronic illnesses, physical, mental and emotional disabilities are on the rise. Gordon will continue to become home to students who suffer visibly and invisibly with disabilities and diseases that need to be addressed with sensitivity and tact. It is my recommendation that Gordon seriously considers creating a position in CSD for a liaison to the student body who can help create a system that supports students needs regardless of whether or not they are apparent. The ASC, Susan Forsythe in the Health Center, my professors, friends, classmates and mentors were supportive and provided me with help when I needed it. I hope that the administration can take a cue from the student body and staff and learn how far and how much leniency, grace, trust and belief can take them.