How I Won the Game Against Chronic Illness
Twenty years ago, my son played Little League. I can still vividly remember Coach Frank pulling him aside after he struck out multiple times during a game. Coach was a drunk. We all knew that, but he believed in his kids and cared about more than wins. He even believed in my son, the boy with a big old brain but two left feet, and the inability to skip or even run well at seven years old. We all knew he would never be a great athlete, but my boy still tried and his spirit was what we cheered on night after night in the cold ballpark stands.
“You’re not gonna always win, kid,” Coach said quietly, where the rest of the team wouldn’t hear. “But you tried, and that’s a victory.”
My son caught my eye through the fence and I could see the tears were close. When he begged me in the next weeks to quit the team, I made him finish the season but then he hung up his cleats. See, I knew all too well that moment when enough is enough. The coaches or teachers or doctors urge you to keep playing, keep trying. But inside you know that one more loss is more than you can bear.
My son eventually found computers. He was a real whiz, a Steve Jobs in the making. He even started college with a different major, but computers were his special power and today he designs cutting-edge software. He innately knew when to forge ahead on his wins and when to move on from his defeats. I’ve never quite learned that skill.
In 2014, when my life was ripped away due to a fluke accident during surgery, I mourned the loss and tried to move on with it. When over the next two years I had to undergo several more procedures and surgeries, I still believed in my own strength and the adages being lobbed at me — “Everything will be okay”… “This will all work out”… “This, too, shall pass”… “One day you’ll look back at this battle and be proud of yourself.”
But having an invisible illness isn’t an elementary school fastball. It isn’t your feet not cooperating some days as you break for home plate. I’d hazard it is more like being handcuffed to a batting cage while a professional machine pelts you with leather projectiles from two feet away. It targets your body, your mind, your soul. When my losses seemed overwhelming, I was ready to hang up my cleats but just couldn’t because it felt so much like failure.
In the beginning, I tried my damnedest to hold on to the fact that one day I would return to my former life. I’d lose the bedridden weight gain. My once thick, shiny hair would grow back. I’d stop crying and being afraid of everything going wrong all the time. I’d be able to complete a 5k with my best friend instead of feeling faint just walking to the bathroom. My new husband and I would have adventures and I’d sit on a beach in a bikini under his admiring eye like the sex goddess he’d married. But normal never returned. In fact, things got worse. One illness became two, then three. Complications arose continually as if I’d repeatedly won some sort of bad luck lotto.
Finally, one doctor told me to snap out of it and accept my reality — I wasn’t going to get better. In response, I went home and made plans to die. The stands were empty and even my doctor had stopped cheering for me. I knew the moment had come where one more loss was more than I could bear.
While slightly dramatic, it wasn’t far from what the doctor told me. My condition was putting an inordinate amount of stress on my body and mind, and eventually, they would quit going to bat for me. I had to live with my illness, not ignore it.
I guess I missed the “living” part. I quit my job. I crocheted baby blankets for my then high schooler and college-aged children, for their maybe-one-day kids since I didn’t plan on being there. I sifted through a lifetime of memorabilia. Some of it went into plastic totes with my kids’ names and some went into the flames (goodbye middle school journal that NO ONE needs to read.) I tried to push my husband away, thinking it would be easier for him to move on after I was gone. I recorded my favorite stories and printed them out to be discovered when they sorted through my things. I wrote up a will and even made arrangements for my pets, so incredibly thoughtful and thorough was I that I’d never be a burden to anyone again. I put it all in a manila folder, including a list of music for the funeral. I was ready to die.
A year passed, then two, and I didn’t die. I didn’t get better either. Instead, I began to realize that I’d have to rethink my plan… again. Trying to get back to my former glory was a pipe dream. Dying didn’t seem imminent either. I had hit the bottom and had nowhere else to go. I could either begin the arduous climb out of that black hole or spend eternity in the dark, alone, waiting to die. I was still chronically ill but had to be honest with myself about my unrealistic expectations of how my journey was going to go. My reality was a hard, hard pill to swallow, bitter, and acrid as battery acid and just as painful to digest.
Enter the realm of the New Normal. It is dark here and depressing. The coffee sucks and everything hurts in the cold and damp. Every single thing you thought you knew about the game of life has been thrown out and you’re on deck, no helmet or bat. Your only job is to stand there and accept your limits. That old lesson about trying and not giving up is flipped on its head and the new script forces you to accept that you must give up some things (like certain dreams or even hope) to move forward. The new you must accept instead that progress might just look like barely existing above the depression and disability. Easy peasy, right? Not quite.
“You’re not gonna always win, kid,” I pictured Coach saying, “But, you gotta try.”
So, try I did. In the several years since I stepped back into the game of life, I’ve had lots of losses and a few victories. I’ve seen dozens of doctors, had hundreds of procedures, swallowed thousands of pharmaceuticals. Most treatments didn’t work, but a few gave me a break at least, a sort of half-time where I could catch my breath and dust myself off. A few were so promising, they even gave me hope, call it the third base of invisible illness. But the disappointments were also in play. My biggest victory was learning to see it as a whole, the sum of all its parts.
The most poignant example was the “miracle” surgery I had in 2016. My specialist had straight up given up on me. She referred me to a doctor who offered a Hail Mary pass. He could do surgery which would remove the nerves that caused the majority of my pain. My odds were not so good, no one would be betting on my success. The procedure was invasive, painful, and expensive, not to mention the success rate was less than stellar. The tests to see if I qualified were equally invasive and painful.
One particular test gave me stroke symptoms and one side of my mouth sagged for a couple of days, causing me to drool and wink constantly like a drunken floozy. Still, I was hopeful and we persevered. Until we didn’t. The surgery failed within three months. After an initial dip in my pain frequency and levels, it all came raging back worse than before. Even worse than the pain was the overwhelming depression. Despite warnings of “managing my expectations,” I was crushed when it seemed my last-ditch efforts had failed.
I honestly struggled to even get out of bed for several months, but eventually, I did. Now, several years after the fact, I think the surgery actually helped, just not as much as we had originally hoped. From that point of hopelessness, I have since learned patience and to celebrate the small victories. Within a year, new treatments came out for my condition for the first time in decades. Though they eventually failed as well, it gave me a brief respite and I had learned to be grateful for those small wins, and moreover, to see them as such. I could finally see the big picture.
- I still suffer 16 or more days a month of incapacitating pain which means I have pain most days. But I don’t have pain every day.
- Most treatments eventually fail. But some work briefly, and new treatments may come along at any time.
- I may not have as many victories as I’d like. But I don’t have to count my failures against those few wins.
- I have a chronic illness. But I am not my chronic illness.
“You’re not gonna always win, kid,” I’d tell that woman that was me in 2016, the one who was at her lowest. “But you gotta keep trying, keep living.”
I’ve accepted that the future I once planned for is not going to happen. It’s a loss I still grieve and probably always will. I also know that there are so many people who have it way worse and maintain better attitudes, that’s on me. Just like Little League, changing your perspective takes practice. I’ve finally learned what Coach Frank meant when he spoke to my son all those years ago: You’re not always gonna win, but each new day is a victory.