Chronic Heroes: Kait Masters Pt. 1

I met Kait in North Dakota, while we were on separate mission trips to the same place. She is, without question, a singular individual. She is caring, beautiful, funny, smart, artistic; the list is only exhaustive because so is the English language.
For all of the amazing qualities I could write about when it comes to Kait, I chose her to put a face and a voice to an intersection that is often arrived at, but rarely spoken of.

Kait is chronically ill. She has Myasthenia Gravis. It doesn’t have a cure.

She let me ask her some tough questions about the trauma that goes along with a staggering diagnosis.

1. For the uneducated masses, what is MG?

Myasthenia Gravis, or MG, is a neuromuscular autoimmune disease. Achetylcholine is the chemical that delivers the message from your nerve to your muscle. People with MG have abnormal antibodies that block or destroy the acetylcholine receptors that tell the muscle to contract (or move). The lack of working receptor sites then causes muscle weakness. MG literally translates to “grave muscle weakness”.

MG affects all voluntary muscles including those used to breathe, see, walk, and swallow. There currently is no cure and no known cause. There are treatments, but they have long term side effects and can be extremely expensive.

MG is often referred to as the “snowflake disease” because no two immune systems function identically. This makes all MG symptoms and treatments unique to the patient. What works for one patient may cause distress in another patient.

2. A lot of people think that physical illness and trauma are completely separate, what would you say to someone about how your physical illness has caused trauma in your life?

Trauma being defined as: a deeply distressing or disturbing experience; MEDICINE physical injury. Synonyms: injury, damage, wound

I was diagnosed at a very young age. I was 10 when I first had symptoms, and I was 11 when I received my diagnosis. I was lucky in some ways, because I was just forming my personal identity at that age. However, that does not mean I was spared the trauma of feeling like my life was crumbling around me. My life felt worthless, and I was a prisoner in my own body. I couldn’t do the things I once loved. Before MG, I was a highly competitive and active kid. I loved playing outside, riding my bike, swimming, taking dance classes, and running. I took art classes, played the viola, piano, and oboe. I went from that life to sleeping 18+ hours a day. I fell when I walked, I couldn’t hold my arms up to brush my hair. My speech was slurred, my vision was blurry, my hands could barely hold a pencil. I couldn’t chew or swallow food. At that age, I really wondered if I was dying. To deny the connect between physical illness and trauma is just untrue. I wish that I had started counseling when I was diagnosed.

Besides the emotional trauma I experienced, my family experience trauma as well. My parents especially… to learn how to care for a chronically ill person, provide for them financially and emotionally. To learn how to adjust expectations, hopes, and dreams. Now that I am older, my heart aches for what they went through watching me carry the burden of diagnosis.
I have control issues because of my physical illness. I don’t like deviating from plans, and I hate feeling out of control – I don’t like trampolines or rollercoasters or speeding in the car for this reason. There was a period of time where I tried to assert control over my body by controlling my food consumption. It was at that time that I started seeing a counselor (more than 5 years after being diagnosed). She helped me see that a lot of the pressure I put on myself and those around me had to do with my fears of missing out and being left behind, stemming from my illness and diagnosis (I was out of school for 2 years from age 11 to 13).

I don’t think doctors prepare their patients enough for the emotional trauma that coincides with a diagnosis, children and adults alike. Many of us have to grieve the loss of a life; the past and the future. We have to grieve the end of a season of life and usher in a new season of endurance that many of us are not equipped or want to handle. We also have to grieve the loss of a future and expectations that we were not prepared to let go of.