by Cindy Mendelson
Albuquerque was beautiful in May. The mountains glow in the sunlight against the blue sky. Hot air balloons dot the horizon. The cool, dry air beckons runners and walkers to enjoy the morning.
Unfortunately, I was inside. I had converted my bedroom into a cold dark cave. The cooler was blasting in the darkened room. I had shuttered the two windows and the patio door that allowed the first light and sounds of the morning to wake me. I couldn’t see the plants in my yard or hear the birds or the waterfall in the pond.
I had a blanket pulled up to my neck, a bag of frozen peas across my right temple. I had buried my head in the pillow and closed my eyes. Not only was the light painful, using my eyes was painful, even in the dark. A bottle of flat ginger ale and a box of tissues were on my bedside table. A vomit pail sat next to my bed.
My head was exquisitely painful, and my neck was stiff. The temple area of the right side of my head and the area behind my right eye were throbbing and pulsating. I could feel the blood rushing through the swollen vein in my forehead. When I rolled-over or god-forbid, I had to get up to let the dogs out or go to the bathroom, I could feel my right eye pulsating in its socket. The increased pressure exerted when I vomited, left my brain feeling like it is being pushed out through my eyes. If I hadn’t been through this before, I would think I was dying. I was beginning day three of my migraine.
It was one year, almost to the day, that I left my job for life on long term disability and four months since my Social Security Disability was approved. One year later, even thinking about it makes my skin crawl. It was a stain, a scar or a mark, and it was stigmatizing.
I lived with episodic migraines, those that occur less than 15 times a month, since I was a preteen. I had 4-6 migraines a month. They usually lasted less than 24 hours. I spent productive time in bed. I vomited. I missed work. I took preventative medications since my early twenties. A drug would work for a while, but over time I would have to increase the dose until side effects forced me to try a different medication. I tried a wide variety of rescue medications including, codeine preparations. I bought aspirin in 500 tablet bottles and NEVER left home without a small cache. Despite all that, I lived a normal life. I had a job. I got married and divorced, twice. I had a child. I graduated college. I was happy and sad. I laughed and cried.
About 20 years ago, I had a migraine that left me in a constant cold sweat. Each heartbeat brought a wave of throbbing pain. The pressure behind both eyes was blinding. Every time I vomited, I was sure my brain was going to herniate through my eyes.
“Ken, I’m dying,” I wept, “we need to go to the hospital.”
I received an injection of sumatriptan (Imitrex) in the emergency room, and 10 minutes later my pain was gone. A miracle, not dying after all!
Sumatriptan was indeed my miracle. It stopped my migraines in their tracks. No more time in bed. No more vomiting. No more missed work. I continued to take preventatives to reduce the number of attacks, but my migraines no longer controlled my life.
Despite the medications, my migraines transformed and became chronic (15 or more a month). The event that I feared occurred in December 2012: the sumatriptan stopped working. I took a two-week burst and taper of steroids, to reduce the inflammation in my brain and make my body more receptive to the medications. It helped briefly.
Everything that was important to me spiraled out of control over the next two and half years. I worked closely with a neurologist to get my migraines under control. We increased my preventatives above the standard dose. I continued to use injectable sumatriptan even though it was causing knots to form in my legs. I tried a potent NSAID; it didn’t work. I tried a mild narcotic; it didn’t work. I tried Botox; it reduced the severity and frequency of my migraines slightly. I tried medical marijuana; it didn’t help the pain, but it reduced the anxiety and helped me sleep. Ultimately taking two weeks of steroids every three months, to break the inevitable intractable migraines was the only way I could function. However, the choice to use steroids was not without consequences. I developed osteoporosis and the beginning of steroid induced cataracts.
I was trying desperately to work during this stretch of illness. I had been on track to promote from Associate to Full Professor in a year or two. Work wasn’t just a job for me; it was who I was. My life revolved around work or work activities. It was the foundation of my social life. I adored what I did, and I took pride in doing it well.
I did cognitively intensive work. My migraines affected my cognitive functioning, not only during the headache, but before the headache, and for several hours after the pain subsided. I was not able to think clearly enough to function some days, let alone work. Between the stress and the cognitive problems, I would find myself sitting at my desk lost, unsure of what to do next.
My supervisor knew I was having problems and helped me set up intermittent medical leave so I could take extra days off when I was ill. My research partner knew I was having problems because she picked up my slack and dealt with my unreliability. No one else on faculty knew. I didn’t ask for help and apparently, I faked it well. I tried to make up for what I couldn’t get done when sick by working whenever I was well: late into the night, early in the morning, every weekend, all weekend. I was either sick, working, or sleeping. No one knew I was drowning.
September 2013 my neurologist told me it was time to stop working; that I was harming myself. I wasn’t ready emotionally. We agreed that I would take a medical leave during the following semester. However, when I discussed the leave with my supervisor, she presented me with a letter of complaint from my students expressing concern about my health and concern that they were not getting the instruction that they needed to succeed in their course. I was crushed. I knew I wasn’t keeping up, but I didn’t realize I was doing so poorly. I remembered the awful Alzheimer’s jokes about not needing to worry about your memory as long as you knew that you forgot things. Well, I didn’t know how badly my migraines were affecting my work. I had prided myself on being a good teacher. A bit of my soul died that day.
I started my leave the following week. Although my stress was less, the effect on my migraines was minimal. When it was time to go back to work, I only went back two days a week and started the process of applying for long term disability. I left permanently in May 2013.
Leaving a University job due to disability was a weird situation. I had to resign, and that felt wrong. It was not like leaving for a different job, and it was not like retiring. You vanish. There was no emeritus status; that was for retirees. There was no carry through insurance; that was also for retirees. I just disappeared, forever, from academia. I declined a party when I left; I didn’t feel like celebrating. The promise to get together for lunch “sometime soon” never materialized. Even though I left for health reasons, I felt like I left under a cloud; with a less than an honorable discharge.
I needed to start again, and I couldn’t do it in New Mexico. The neighborhood I lived in was possible because of my income as a professor. I landscaped my backyard and put in a pond as a gift to myself after I achieved tenure. None of it felt right. It wasn’t my life anymore. That person no longer existed. For all practical purposes, she died.
In June I left Albuquerque for Philadelphia, migraines, and dogs in tow. The top headache center in the country was there. No one knows me. I can start fresh. Retired early, for health reasons, should anyone inquire further.
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