My people
One of my best friends had a sudden medical emergency a few months ago.
One of my best friends had a sudden medical emergency a few months ago.
I talk a lot about the hard stuff. Mast cell disease is a bummer. Some days are easier than others, and I still enjoy my life, but it’s still a bummer. Everyone with mast cell disease deals with insurance frustrations, physical and emotional stress, and feelings of isolation and being misunderstood. These things affect my life a lot, so I write about them.
I read “The Fault in Our Stars” last fall. It’s about a sick girl who falls in love with a boy and they have adventures and fall in love. I had intentionally put it off for a while. I tend to not like stories about illness, for the same reason I tend to get irritated watching science-based television shows: it’s hard to enjoy the story when it is so inaccurate. A lot of my friends had loved it and felt that I would like it if I read it.
My Nana, my mother’s grandmother, died when I was five years old. I remember my mother telling me that she had died. I didn’t understand what that meant. She told me that when the people we love die, their spirits stay close to us to protect us. They become guardian angels. I am grateful to my parents for many things, but one of the things that I most appreciate is the way they treated death. It was never frightening or scary to me. It was just a milestone, like marriage or retirement. It was something everyone did.
What exactly is the D816V mutation and why does it matter? To answer that, we need to understand the basic pathway by which a cell expresses a gene.
DNA (deoxyribonucleic acid) is the molecule that contains the genetic code for all known living organisms and some viruses. DNA is composed of two strands that wrap around each other in a double helix pattern. DNA is built out of nucleotides, molecules that contain energy. The nucleotides that build DNA are adenine (A), guanine (G), thymine (T) and cytosine (C). These nucleotides bond in specific pairs. This means that when one nucleotide in on one strand of DNA, there is a specific nucleotide on the other strand. A and T, and C and G specifically bond to each other. They are known as base pairs. DNA strands made up of base pairs are said to be “complementary.”
DNA replication is the process by which an exact copy of a piece of DNA is made. This happens when a cell divides. In replication, the DNA double helix “unzips,” or splits apart into two strands, the base pairs of which are not connected. Special enzymes move along each of the two split strands and place the appropriate nucleotides next to each strand to form base pairs. The end result of this is two double helices of DNA that are exact copies.
I have seen several mental health professionals over the years. In 2011, I was trying to break in a new therapist. The first few appointments always go the same and are always exhausting.
We all have shadows, after all.
Last fall, I took a Myers-Briggs workshop for work. This event determined our Myers-Briggs Type ahead of time and then used several exercises to explain how we perceive the world and make decisions, compared with how our coworkers did so. It classifies you are being one or the other in each of four pairs of preferences: extraversion vs introversion; sensing vs intuition; thinking vs feeling; judging vs perception.
We broke up into groups of similar attribute (all extroverts, all intuitives, etc.) to demonstrate the differences in how we address situations. When we broke up in groups of thinking vs feeling, there were only two feeling people out of twenty. We were given a scenario in which we had to cut some people from a planned trip, and asked to explain how we would determine who would be cut. The thinking group had a very clear, logical decision tree. We, the feeling people, also had a decision tree, but it was clearly based on helping people the most. The thinking group wanted to send the most qualified people, who would best represent the company. We wanted to send the people who had never been, who would appreciate it the most, who might never get to go again.
Being around someone who is chronically ill often brings out the best, or the worst, in people. It is rarely neutral. One of the privileges I have in life is to work with people who have shown me an incredible amount of compassion and understanding. “The other day I sent my friend flowers for no reason,” one of my friends told me a few weeks after the training. “I thought about your ENFJ speech.”
Emotional stress is my biggest trigger. Not emergencies, mind you – I am good at reacting, administering, directing in an emergency. I mean the type of emotional stress that can only come when someone who loves you wrongs you. I can deal with people I care about minimally treating me poorly without risking anaphylaxis. But when it’s someone very close to me, someone whom I love deeply, it is very dangerous to my health.
I ended my relationship for good in February. I would rather be alone than be with someone who handles my illness so poorly, though this is no comfort when there is no one moving against me at night. I wanted to stay, but I could no longer ignore the fact that the stress of trying to fix this had taken a very serious physical toll on me. It wasn’t worth my life. And my heart was already broken, anyway.
The very first person to recognize that I had a systemic disease was the doctor who performed my sinus surgery in 2008. The previous June, I had gone on a three-week backpacking trip through Scandinavia and contracted a sinus infection I couldn’t shake. In November, after several rounds of different antibiotics, I was referred to an ear, nose and throat specialist. He took one look at my massively deviated septum (a casualty of my wild child teen years) and scheduled surgery to clean out my sinuses.