The Butterfly in my Throat : Fear & Hope

Learning New Things.

That summer, I decided to live on campus after the school year ended, yet again. I was working, taking music lessons, and still lived alone in my small dorm apartment. The disease was ever on my mind. I was reminded of it multiple times a day. Symptoms here, anxiety there. The drive to feel normal kept me going. I was still learning new things about my disease and how it affected other parts of my body. I remember a pretty severe dizzy spell that lasted for a few weeks that summer. It was simply seasonal allergies, but it was a first for me. My body responded differently to things. 

I was well enough to take a vacation in the summer before school. I flew to Michigan to visit a friend. One day, we traveled to Chicago and planned to stay the entire day. By 2pm, I started feeling strange, weak, faint, and despite all the fluids I took in, I felt overwhelmingly dehydrated. We left early and I learned later that I felt sick because I was in the sun for too long. Somehow my medications reacted strangely when I had been exposed to too much sunlight. 

I still did not understand that I was suffering with an autoimmune disease. I still did not understand what was physiologically happening in my body. I did not understand the correlation between the physical aspects of Graves' disease and mental health. I never knew what to expect. I did not know what was a symptom of the disease or a side effect of medication. I felt I couldn't trust my doctor because she was fiercely negative, difficult, and argumentative. That summer, I switched endocrinologists.

The Visual Symptoms. 

Before school started up again, my hematologist (a blood specialist) released me, saying I was, “too healthy to continue in his care.” It was a magical moment. I walked out of that office so full of joy that my skin tingled. No matter how healthy or unhealthy, when you struggle with disease and a doctor says, “You’re too healthy,” you've basically won the lottery. The crushing weight of fear on my chest became a bit lighter. 

His office was located inside a large cancer center and his practice was shared with an oncologist. Despite all the frustrations and personal issues I dealt with, I was always humbled by walking into that building. Every person in that building, including staff, was visibly sick. 

Graves’ is a disease that bubbles below the surface. It can affect nearly every system in the body in some way and make you feel ceaselessly sick, but it is not noticeable. One will either lose or gain weight, the throat will look swollen (goiter), the eyes bulge out (Graves’ ophthalmopathy), one will appear tired and will fidget often, and sometimes one can develop a rash. These are not striking visual symptoms. Walking into a cancer center with a full head of hair, a swollen neck, acne, and slightly larger eyes made me feel like I was bragging. 

(Google image "Graves' Disease" and I promise you'll either laugh or have nightmares for days) O_O

Control.

In my senior year of school, I lived with two of my friends in a dorm apartment. Living with others certainly helped distract me from my fears and gave me some peace of mind. 

Sometimes, I tried to be apathetic and not allow the disease to bother me. “I have no feeling in my fingers or my lips today. It’s just part of the disease. Let it go.” Many times, I was overwhelmed and afraid. “I have been seeing spots all day. Am I in danger?” I always felt unsafe because there were so many unknowns. Familiar symptoms appeared randomly. New symptoms manifested themselves. I had a new specialist but still never felt any doctor was thorough enough with me. Experiencing these new things and not understanding symptoms or side effects made me feel very out of control. More than anything, I just wanted to feel normal. At the very least, I wanted to be accustomed to what I was feeling and know what to expect. 

Whenever I caught a virus, I felt so relieved. Normal, healthy-minded people would be discouraged, but I felt a sense of freedom. I could EXPECT all of my symptoms. I thought, “Thank goodness this is not some weird unknown part of the disease." Once I recovered from a virus, a small part of me started to feel nervous again. Back to the unknowns. 

A psychologist told me years later, "You are afraid to be healthy because you expect to be sick. You learned to be comfortable in feeling sick, because you expect what you are going to feel." Expectations were in my control. 

Fear.

My hypochondria convinced me that if someone had a disease, I was weak enough to also contract that disease. If someone fainted, I assumed I would faint. If someone had a heart attack, I assumed I would also have one. My mind was a constant whirlwind of fearful torture. I was busy constantly, but it kept me from collapsing under the weight of my fears. 

My prayers were not acclamations of love and praise, but the cries of a beggar. A person pleading with their attacker, “God, please don't kill me. Please don’t kill me. Please keep me safe. Please don’t let anything happen to me. Please, please, please.” 

I remember the morning God spoke to me through a Psalm... 

Psalm 91

Safety of Abiding in the Presence of God

1

“He who dwells in the secret place of the Most High

Shall abide under the shadow of the Almighty.

2 

I will say of the Lord, “He is my refuge and my fortress;

My God, in Him I will trust.”

3 

Surely He shall deliver you from the snare of the fowler,

And from the perilous pestilence.

4 

He shall cover you with His feathers,

And under His wings you shall take refuge;

His truth shall be your shield and buckler.

5 

You shall not be afraid of the terror by night,

Nor of the arrow that flies by day,

6 

Nor of the pestilence that walks in darkness,

Nor of the destruction that lays waste at noonday.

7 

A thousand may fall at your side,

And ten thousand at your right hand;

But it shall not come near you.

8 

Only with your eyes shall you look,

And see the reward of the wicked.

9 

Because you have made the Lord, who is my refuge,

Even the Most High, your dwelling place,

10 

No evil shall befall you,

Nor shall any plague come near your dwelling;

11 

For He shall give His angels charge over you,

To keep you in all your ways.

12 

In their hands they shall bear you up,

Lest you dash your foot against a stone.

13 

You shall tread upon the lion and the cobra,

The young lion and the serpent you shall trample underfoot.

14 

“Because he has set his love upon Me, therefore I will deliver him;

I will set him on high, because he has known My name.

15 

He shall call upon Me, and I will answer him;

I will be with him in trouble;

I will deliver him and honor him.

16 

With long life I will satisfy him,

And show him My salvation.”

I had spent the previous night like most nights: worrying, fearing, doubting, but this Psalm crushed my fear. From the moment I read it, I knew this disease would not kill me and I was not in danger of dying. The words were life to my body, my mind, and my soul. These words are my treasure. I prayed these words. I read them constantly. I kept them so close to my heart. They give me hope, strength, courage, and peace. 

In my senior year of college, I wrote a three movement string orchestra piece based on verse 7 of this psalm, called “In the Shadow of the Almighty.” The live performance is here, if you're interested: 

"Under the Shadow of the Almighty"

(My apologies! The recording got wonky and stopped for a few seconds at 12:47). 

Hope.
Sometime in the spring, I was taken off my medications. I don't remember exactly why; whether it was a trial and error thing to see what would happen, or whether my endocrinologist thought I didn't need them anymore. Either way, it felt amazing and liberating to be off medications.

I graduated in May 2009. I remember the morning of my graduation, my parents gave me a necklace that said, “Hope." It was so special to me. It reminded me that with hope, I could overcome anything. With hope, there's a vision, there's purpose, and there's a future. 

I went home that summer to prepare for graduate school in the fall. Despite everything my doctors said and all the fear that had convinced me otherwise, I went into remission.

May 2009

Be blessed and be well,

J