This essay was intended as the beginning of a monthly column, a pitch for a well-regarded online literary journal. As I mapped that series out, I decided that these were ideas I wanted to write about regardless of whether they were accepted and published elsewhere. They weren’t picked up, which is disappointing, but I’ve decided that the first Wednesday of each month will be when I continue the column for myself. That’s my intention, at any rate, and we will see how that goes. Thanks!
My two sons, Nicholas and Christopher, are eight and six respectively. My chronic illness began when Christopher was just a year old, so by all accounts they have known a mother with pain far longer than they have known her without.
The first blood tests were drawn out of my fat, left-arm vein when Christopher was still small enough to fall asleep in his car seat and was portable like a piece of awkward and heavy luggage. Nicholas was squirmy and independent at three, and I couldn’t trust him to not run through the parking lot if I let go of his hand. Christopher swung from my left arm and Nicholas from my right, and I shouldn’t have gotten the three of us from the doctor’s office to our car that way. I bruised an ugly purple in the crook of my left arm later that night.
That was the beginning. Tests for diabetes and allergies and rheumatoid arthritis followed, as well as screenings for ovarian and colon cancer, and an MRI to look for multiple sclerosis. I was eventually diagnosed with fibromyalgia: a disease of exclusion. The answer to my near-constant pain and overwhelming exhaustion was a non-answer because fibromyalgia has no known cause and no cure. The term “fibromyalgia” might really be an umbrella over several linked but separate illnesses, or it might have its own pathology that hasn’t been discovered yet.
For at least five years I fought every day to mitigate the pain I felt and the pain I thought I might be causing them by being a mother who sometimes couldn’t. I fought to minimize our pain as a family and that became my full-time job. I was a stay-at-home mother for both Nicholas and Christopher their wholes lives, but my real work was to track down the root cause of why any of us were hurting.
I have become very, very good at spotting pain from a distance of space or time. I can hear Christopher’s tone of voice change across an entire playground if he is starting to get so agitated that he might hit a friend, and I know that once we have missed three nights of bedtime stories in a row Nicholas’s shoulders will round and slump in defeat and loneliness. I am honed in on pain, and aggravation, frustration and tears and the fleeting expressions that betray those emotions. This was something I could do, I could see pain as clearly as I could see the color of someone’s hair. This was a way I could still help, even from the couch. I had information about how to mitigate pain in many different forms, from migraines and cramping muscle spasms to loneliness and perfectionism. What I didn’t yet know, I found out. What I did wrong, I corrected. What I knew, I shared as often as I could. I found a way to contribute.
Over time, one of my symptoms became more severe. It wasn’t so odd that suddenly my limbs felt like they were filled with sand, but it was odd that it was happening so often. A feeling would come over me that I could not keep my body upright and that I had to lay down immediately. When I realized it was often after I ate, I researched that combination. Reactive hypoglycemia seemed to be the reason why: after eating too much or too much of the wrong foods my blood sugar would spike too high, prompting my pancreas to produce too much insulin which would make my blood sugar sink too far down. Since I have done stranger things than eating small regular meals and avoiding sweets, I decided to try a hypoglycemic diet.
More good days than bad, was how I had been describing my fibromyalgia. But the good days still included wild fluctuations of anxiety and depression. The good days still might mean that I fell asleep on the couch for an hour when I didn’t even realize I was tired at all. The good days meant that I didn’t growl all through soccer practice, but I might growl a lot when the boys took too long in the bathtub afterwards. Then a bad day included a Mother’s Day where Nicholas asked me over and over again what special thing I wanted to do and eventually I hissed at him, “I don’t feel well. I don’t know if I’ll still feel this bad all week and I cannot afford to feel bad all week. It’s my Mother’s Day, what I want is to clean up the kitchen, to put the laundry away, to take care of chores now. I want to know that we’ll be fine for the rest of the week. That is what I want. Is that all right with you?” Something had to change.
I changed my diet, and I felt good. Actually good. It lasted longer and longer. I felt better and better. My good days now included spontaneously taking the boys to the pool and not experiencing the gnawing fear that I wouldn’t have enough energy to now make it through the day. My good days meant fourteen hundred words of writing in one morning, when fourteen hundred would have been a stretch for an entire week. My good days meant I could tickle Christopher and wrestle with him and not hide the tears that would have normally stung my eyes seconds before I would have had to tell him, “I’m so sorry, but I can’t anymore. I’m hurting too much.”
I had lived so long mitigating pain and had become so adept at devising strategies to cope, it was the skill I had honed the most. It was a skill and a body of knowledge I shared with my family and shared with friends and shared with strangers. It became a constant in my life: seeing and helping to ease pain. That was primarily what I did, all day long.
All that time I was a student of pain I wasn’t necessarily a student of joy. I felt fairly certain that joy was, for me, obtainable only in small measures, and I felt content looking for it in small places. On a daily basis joy meant, simply, less pain. If I could achieve that for myself or anyone else I was happy that the limited amount I could do, I did. Now I have passed that limit. I feel much, much, much better. A part of me feels guilty that I do. A part of me wants to learn joy.
I want to share with you what I have discovered about pain. I don’t want the five years I spent in pain, the majority of my children’s lives, the primary hard work I did during that time to become lost. There are times and situations where less pain is the only joy you can reach for today.
And I want to share what I am learning about joy. Because I want to share joy.