I Am Not The Same Person As Before MG
MG Unmasked: What is Myasthenia Gravis to you?
Tyler: Myasthenia gravis is a neuromuscular/autoimmune disease that affects the way I walk, see, smile, and breathe. It is a disease that completely changed my life in both good and bad ways. It not only affected my physical being, but my emotional and mental being.
MG Unmasked: How has it changed your life both positively and negatively?
Tyler: MG has changed my life in many ways, both positively and negatively. On the negative side I struggle with daily tasks, I’ve lost friends, and I can no longer do things spontaneously. I struggle with walking quite a bit and use a cane. Most of the friends I had before I became ill slowly faded out of my life. They just don’t understand MG and what it’s like to live with a chronic illness. They expect me to be able to do everything I used to do and I just can’t. That has been difficult for me at times. I would love to be called the day of and go do something with friends or just hangout, but I can’t really do that anymore. Everything must be planned out, is it an accessible place, are there stairs/elevators, will I have to walk far, will I have to stand or sit for too long, can I drive there (how far is it) and is there handicapped parking?
On the positive side, I have met so many wonderful people that have been extremely supportive and helpful with my questions. I have gained access to what sometimes feels like an exclusive club, the MG community. Another positive thing is that I’ve slowed down (against my will) both literally and figuratively, and have learned to appreciate the little things in life. I’m so grateful to have met such wonderful people that not only understand MG, but understand me too, like my online friends, but also some friends from college. They’re the best. Do I wish I wasn’t sick? Of course, but would I change my experience? No.
MG Unmasked: MG hasn’t kept you from pursuing a college education. How do you make that work for you?
Tyler: Before my diagnosis, I had started my undergraduate degree, a BS in Computer Information Systems and Technology. I was a very active member of my campus community, participating in various activities, being president of our LGBTS Alliance, serving as an orientation counselor to incoming students for a few years, working a work study job, and taking 12 credits (full time) per semester.
While trying to get diagnosed, I was stuck using a powered scooter to get around our campus, even though it is tiny compared to most. My grades slipped a little and I had to withdraw from most of my courses, but I stayed in school throughout it all. I was determined to finish what I had started, taking just 3 credits a semester in an effort to get the 120 credits needed to graduate. I was also still in my work study job, however I soon had to quit as I couldn’t make it to work much and do one class a semester.
After my diagnosis, I’m still in college part time taking 3 to 6 credits a semester. I do receive accommodations and my professors are usually very understanding of my illness. I ask for leniency with attendance and occasionally extensions to get work done. I live on campus with an amazing roommate. He’s very understanding and accepting of my illness and me in general. He does a lot for me, including cleaning the dorm (most of the hard work), and taking out the trash and recycling as I can’t carry it long enough to get to the dumpster/recycling bins. While I have slowed down quite a bit, I’m still president of the LGBTS Alliance which is often a lot of work, but my fellow officers are very helpful and often take over when I can’t be at an event or meeting. I’m also part of a diversity committee to the president of our campus and have been since it was formed in 2013. While I occasionally need my powered scooter still, many days I get around with just my cane. Overall college is a lot of work, but I’m determined to finish what I started and that determination is what drives me to keep going.
MG Unmasked: What advice would you offer someone else with MG who is trying to achieve their dreams in spite of it all?
Tyler: My advice would be to take it slow, know your limitations, and ask for help whenever you need it. I understand that may take some time, but I personally believe it is necessary in order to keep going.
MG Unmasked: What do you wish others understood most about MG and your life now?
Tyler: I wish others understood that I am not the same person I was before my illness. Any chronic illness can change your entire being. I wish they understood just how difficult it is to be exhausted all the time, to be weak most days, and still have to function. I wish they knew the fatigue that comes with myasthenia gravis and the fact that it is a chronic illness that is not going to go away.
Written by Rebekah Dorr of Myasthenia Gravis Unmasked.
Interview may be shared with credit to original author.
Tyler Morris, Myasthenia Gravis Warrior