Chronic Illness, My Story
“Being sick or healthy is not a matter of what God decides we deserve. The better question is, ‘If this has happened to me, what do I do now, and who is there to help me do it?’” Harold Kushner, 2004
It’s March as I write this, and we’re having an early spring. I want to be outside, digging in the earth or hiking a trail, among the green buds and gentle warmth. But I’m confined to my deck and learning again to enjoy spring by observing and being rather than doing. I remind myself that it’s important to balance ‘being’ with ‘doing’ and that this medical relapse gives me such an opportunity.
Until age 49, I led an active and busy life. I worked two jobs through undergraduate school and full time through an intensive three-year graduate program. I day hiked and kayaked whenever I could find a willing partner. I went on mineral digs and hosted dinner parties. I had my first and only child when I was 40 and unexpectedly became a single parent 18 months later. I taught my young son how to climb trees and roller skate, while I was directing a mental health clinic.
However, in June 2013, I contracted Rocky Mountain spotted fever. As you may know, this is a bacterial infection transmitted by ticks, and it can be lethal. My infection initially went undiagnosed because I didn’t find an embedded tick and didn’t have the hallmark rash. At an urgent care clinic, I was diagnosed with a summer flu, despite my insistence something more was wrong. When I finally got to my regular doctor, he tested me for it on a hunch (smart man!) and immediately prescribed antibiotics.
But as the months passed, I realized that a cold or some viral nuisance was almost constantly present. One morning in early December, I awakened with relentless vertigo that didn’t abate for two weeks. The vertigo episodes kept recurring, lasting up to several weeks at a time. No vertigo medication worked for me. Parts of my face and tongue would go numb, the left side of my head burned, my extremities tingled and burned. My legs felt weak, my blood pressure dropped, and I wondered at times if I could walk. Panic attacks plagued me. Getting out of bed in the morning took twenty minutes. Showering was miserable, because the water triggered neurological problems, and I felt like I was going to collapse. Most of the time I felt like I was going to collapse physically and mentally. Sheer grit and faith kept me going.
My doctor was perplexed, so I started the rounds with multiple doctors. Several dismissed me. Everyone had a vague theory about my condition but nobody had answers or treatments. One doctor suggested it was a food allergy and put me on a strict diet, which I followed to the letter. I only weighed 100 pounds then and quickly dropped to 92 without any symptom relief. By then, I was 50 years old, with a ten-year-old son, and still a single parent. I couldn’t drive or work a regular job. I was blessed to have my mother step in and provide the daily support my son and I needed. My employer was also incredibly supportive, allowing me to work from home. Everyone is not so fortunate.
Eventually I connected with a remarkable neurologist. A man of science, intuition and faith, he didn’t dismiss me—he actually embraced my struggle and symptoms. He drew 27 vials of blood, scrutinized the MRI of my brain and ran a panel of neurological tests. And he had answers!
It’s a complicated medical melee to explain. Here is the simple version: the spotted fever crashed my immune system. This permitted dormant viruses in my body to start replicating unchecked. The predominant one was Epstein Barr, the virus that causes mononucleosis, which I had in 1989. It was the main culprit of my myriad symptoms, but there were many other viruses replicating, as well. My body was even fighting the gliadin protein, also known as gluten, found in wheat, rye, barley and triticale. My working diagnosis was chronic Epstein Barr, fibromyalgia and celiac disease.
I’ve been on antiviral medications since 2014 and a host of supplements. I eat gluten-free to prevent my immune system from wasting energy fighting the gluten protein. It took about a year for me to have a noticeable improvement. But it takes an average of seven years, my physician says, to control the Epstein-Barr virus in cases like mine. It’s now 2020, and I battle on, determined to restore my immune system and quell the viruses.
This has been a humbling and fierce journey. I can manage a productive life if I carefully pace myself, take medications and supplements, limit stress, get proper nutrition, and maintain restorative sleep. But symptoms quickly recur if my carefully orchestrated routine slips. Being human means that life events wax and wane and so does my ability to keep a healthy routine. Sometimes the symptoms are just a nuisance, and sometimes they force me to a cruel halt.
My medical state is not life-threatening, but it certainly is life-altering. I’m sidelined from many of the activities that once made my life rich. It’s difficult to make firm plans with friends and family or for travel because I can’t predict my physical ability to participate. Just getting through the essentials of daily life can be overwhelming. It’s disheartening that I can’t routinely contribute to my faith community. Trying to explain why I can’t attend outings is frustrating; it can be easier to withdraw. I rely on faith to prevent wild imaginings that I might lose employment and become destitute.
The most agonizing aspect has been the limitation to parent my son as I wish. It’s gut wrenching when I can’t be the physically active parent I once was and having to decline activities in which I previously would have taken the lead. Many days I have to be content with providing for his basic needs and modeling how to navigate life when it lays you breathless and bare. I don’t want my son to miss out on life because of my health.
I’ve learned much about myself, deepening faith, holding hope and how well-meaning people can be befuddled when trying to respond to suffering and medical situations they don’t understand. My medical diagnosis is just one of many that alters lives and limits a person’s physical ability to live the life they intended.