Conversations with Doctors: The Story of a Rare Disease
My Ethical Obligation as a Writer
There are certain situations when I know a person in authority is going to say or do something out of arrogance, ignorance or abuse of power. I almost feel it is my duty to say the following to them:
I feel obliged to disclose that I am a writer and everything you say is being mentally recorded and may later be used in my fiction or nonfiction. Are you comfortable with proceeding?
Case in point
I’ve always lived a pretty normal life for someone from a dysfunctional family. When I was little I did all the typical childhood things. I pretended like crazy. Climbed trees. Played Starski and Hutch on the roof. Put my little brother in a rusty trash can elevator and pulled him to the top of the shed. When I got older, my development continued in a similarly typical fashion. I drank like crazy in college. Went to keg parties. Had boyfriends. Somehow passed exams without a textbook. In my twenties: Waitressed. Moved across country. Lived in San Francisco with an asshole fraternity guy named Drew. I was just like everybody else. In my early 30s I quit drinking. Had a child. Went back to graduate school. Striven (for a short time) to be a MILF and failed. Volunteered at my daughter’s school.
What I’m saying is that I’d always thought of myself as a normal person from a crazy family. I would never in a million years have thought I had some rare disease. When I was a child, I sometimes got serious infections and had to be hospitalized and given IV antibiotics. Rheumatic fever. Scarlet Fever. Something my mother called ‘blood poisoning.’ I always had sinus infections and when I was in my mid 30s I fell ill with pneumonia. After that I had a cough that wouldn’t go away. I was afraid to go to the doctor because I was sure I had emphysema Why did I smoke cigarettes and write poetry constantly from age 15 to 28? The cough was so bad that everyone asked me “are you ok?” It wasn’t are you ok like “here have a drink of water.” It was are you ok like “do you need me to call an ambulance?”
All I heard from people was “are you ok?”
I was so tired all the time that my already out of control coffee intake reached new heights.
Doctors would ask “really about 12 shots of espresso a day?”
I’d say, “well I don’t know.” I’d start adding up my Starbucks lattes, drip coffee at home, drip coffee at work. I’m not really very good at math.
After I turned 40 things started to get worse. It felt like I was climbing a staircase that kept getting steeper and went on forever. I had always been normal and healthy. I’d always wanted to do more things than time could ever have allowed. I remember my mother-in-law saying “You can have everything, but not all at once.” I knew those were words of wisdom. Also, words of cowardice. Every other mother in the world does everything all at once, why couldn’t I? I kept working, volunteering, writing, cleaning, groceries. Drinking more coffee. At some point carrying on was nearly impossible. I thought I would die lugging a bag of Christmas gifts into the house.
That was when I started going to doctors, searching for an explanation for my health problems. Before I was diagnosed with a rare immune disorder, it had gotten to the point where I had to use a breathing machine 4 times a day. Sometimes when I was teaching I’d have to stop class, take a break and go to my office and do a breathing treatment before I could continue. I was taking steroids, antibiotics, antihistamines, decongestants, antidepressants, IV iron infusions. My immune deficiency was rare and as one doctor said, after the fact, “elusive.” Apparently, I’d never produced two antibodies. I think it was IgA and IgE or it was IgG and Ig — something. The thing was it took only one blood test to figure it out. I started treatment about a year ago and now my health is almost completely back to normal. It took almost 10 years for someone to order that one blood test. Once I received the diagnosis, I saw the immune deficiency as a metaphor for my entire life up until that point. I’d lived my whole life without certain essential physical and psychological protections.
Of course, getting to the diagnosis and subsequent treatment involved a LOT of doctor’s visits. I found that no matter how esteemed and well-educated they may be, doctors are at their weakest when they don’t know the answer and have only 10 minutes to come up with something. It’s like bullshitting on an essay question about a book you didn’t read. “The event in the book that most affected me was when Huck Finn killed Tom Sawyer in the end.”
The rest of my story is best told through my conversations with doctors throughout this ordeal. The conversations below were with a bunch of different doctors (not one) because I kept seeking 2nd, 3rd … millionth opinions.
Conversations with Doctors About My Health Problems
DR: I’ve seen people with B-12 deficiency end up on crack cocaine.
ME: Really?
DR: Yup. They start out like you, drinking too much coffee but they can’t stop the fatigue. Eventually they end up resorting to crack cocaine.
Really? Is she joking with me?
ME: Really?
DR: I’m completely serious.
ME: Well, I’m not going to use crack cocaine. I’m a mother. I have a little girl.
DR: You’d be surprised what you’ll do to get some energy.
ME: Well, I’m not going to use crack cocaine.
—
ME: I’m so tired
DR: You’re a mom.
ME: I know but I’m really tired.
DR: You’re a mom. And you work.
ME: I really don’t work that much and my daughter is in preschool all day.
DR: I think you should take yourself out and relax in a hot tub. Do you know that place on Lincoln?
ME: No.
DR: Here’s the address.
—
DR: Are you depressed?
ME: I’m really tired. And, I have this cough. And sinus infection.
DR: I think you’re depressed.
ME: It’s possible.
DR: Does it run in your family?
— -
DR: You had rheumatic fever as a child? I have never heard of anyone with rheumatic fever in this country. In third world countries yes.
ME: I had very negligent parents.
—
DR: Nice boots.
ME: thanks.
DR: You’ll be fine. You’re just tired. Have fun in your boots today.
ME: OK.
DR: What kind of car do you drive?
ME: a Subaru.
DR: I always wanted a Subaru. Have fun in your Subaru.
ME: Ok.
—
DR: Sometimes we just don’t know. (refers to a chart of the respiratory system). See here? These are your sinuses, that’s your upper respiratory system. It follows down here and connects with your lower respiratory tract. What happens up here, happens down there. Your sinus infections are not causing your cough. It is anatomically impossible. Inflammation up here, inflammation down there. See?
ME: Why do I have inflammation?
DR: Sometimes we just don’t know why people like you have inflammation. You’re one of those rare cases that we can’t figure out.
—
DR: What? Your cough absolutely is caused by your sinus infection. He said it wasn’t? He said he didn’t know why and sent you away without investigating further? That’s no way to practice medicine.
—
DR: It’s not a sinus infection. It’s a migraine.
ME: No. I have a lot of sinus infections. I know it’s a sinus infection.
DR: Migraines can mimic sinus disease. That’s probably why you haven’t gotten better with the surgeries.
ME: No. I know it’s a sinus infection.
DR: Well, why don’t you diagnose yourself then? I can’t help you (leaves room).
—
DR: You’ve got vocal chord dysfunction, Sue, get her on oxygen right now.
—
DR: How are you doing?
ME: I know this will end at some point. I’ll only live so long.
DR: That’s funny. That’s like a joke we surgeons have “all bleeding stops eventually.”
—
DR: You have an immune deficiency. It’s a rare disease. That’s why you’ve been getting sick.
ME: That’s a relief. What is it called?
DR: Common Variable Immune Deficiency.
ME: Is it like an autoimmune disease?
DR: No. If you look it up on the internet, don’t get really worried. You’ll see foundations and summer camps for kids with the disease.
ME: Oh.
DR: but it’s treatable. You’ve had it your whole life. You can’t fight certain infections and vaccines don’t work on you. But, you’ll get better.
—
DR: With someone with your disease, we have to make sure we check everything. You’re a special kind of patient.
