In December 2003, I thought I’d tried every available migraine treatment except for the occipital nerve stimulator I was to have implanted at the end of the month. I thought the stimulator would be The Answer and, if it didn’t work, I was out of luck. You can imagine my devastation upon discovering that my migraines were unchanged following the surgery.
Devastation actually seems like too mild of a word for what I felt. I was plunged into the deepest depression I’d ever had. I wrapped myself up in sadness, hopelessness and despair, convinced I would have severely debilitating migraine attacks every day for the rest of my life.
After a year of that, I knew I needed to find another way to live if I expected to survive. I started with a trip to a psychiatrist and prescriptions for Cymbalta and Wellbutrin. Then I began scouring books, searching for a way to build a life amidst severe pain, dizziness, exhaustion, brain fog and a large handful of other symptoms.
“The Anatomy of Hope,” by Dr. Jerome Groopman, was the first glimpse into an understanding of hope that would eventually change my approach to illness and, as melodramatic as this sounds, my life. Dr. Groopman writes,
“Many of us confuse hope with optimism, a prevailing attitude that ‘things turn out for the best.’ But hope differs from optimism. Hope does not arise from being told to ‘think positively,’ or from hearing an overly rosy forecast. Hope, unlike optimism, is rooted in unalloyed reality….
“Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion.
“Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to surmount them.”
These words punched me in the stomach. Could my way of coping with illness – the positive attitude I was often praised for – be a form of delusion that was causing more harm than good?
Before reading “The Anatomy of Hope,” my version of hope was believing I’d find a miracle treatment. I’d throw myself – and my emotions – behind whatever new treatment was on offer, sure it would make the migraines stop. Time and again, this led to crushing disappointment. With Dr. Groopman’s guidance, I redefined hope for myself as believing that it is possible to live a rich, fulilling life even with debilitating chronic illness and that I could endure whatever came my way.
This redefinition didn’t change the frequency or severity of my migraine attacks, but it began to change the way I related to chronic illness. I didn’t stop seeking treatment, but I did stop searching desperately for a magic cure. I stopped breaking my own heart by convincing myself every treatment would be the one to save me. I started to learn how to live with chronic migraine rather than believe my only chance at enjoying life was to be migraine-free.
Of course I’d love to never have a migraine again, but that’s not my reality. I keep working toward that goal, while also trying to live well whatever my health brings each day. I still have days that are filled with tears and anger, but I also have joy.
The irony? Since I stopped using all my physical and emotional energy hating and fighting against migraine, I’ve had enough to channel into finally finding treatments that provide some relief.