My friend, Jenny R, wrote these profound words about her sickaversary.
I want to write something incredibly profound and moving for my 10 year sickaversary. But I can’t. Writing used to be my outlet. It was something that came easily for me and I was proud of my talent with words. Business school beat my affinity for flowery and often turgid prose out of me in favor of conciseness and bullet points. But even so I still retained a nugget of my craft and found ways to enjoy penning a tax research paper in place of angsty poetry.
I could say that it happened the second the virus entered my bloodstream. That a microbe found and destroyed my skill in a summary execution. And in some ways that is true. But it was a slower and (at times) more devastating death. The virus/CFS hijacked my focus and memory immediately. A year later migraines and their medications took and continue to take my words (a condition called aphasia). Then for good measure they took my ability to type or write without angering the ruthless dragon that is the permamigraine (occipital/trigeminal neuralgia). More recently nerve compression from herniated cervical discs and stenosis keep my hands from working properly. But even without these numerous, concrete medical issues, the fact is that I lost faith in my mind a long time ago. That kind of self doubt is as debilitating as my motor deficits.
Because no matter what happened in my life – whether I was single or attached, fat or thin, rich or poor, happy or sad – I had my intellect. Twenty years ago when I graduated from high school I was awarded Most Likely to Run for President and bound for one of the best business schools in the country. I knew I was smart and I felt like because of it endless possibilities awaited me. I was told all my life if I studied hard that everything would work out. Above is a picture of me at 18. Her innocence and joy are hard to look at because I know she would be heartbroken if she knew how it all worked out. That the girl who wanted to major in literature struggles to focus on a young adult audiobook now. That the former CPA who used to run audits can hardly balance her checking account anymore.
This is usually the time where I start to worry I’m alienating people with the harsh truth of living life with a debilitating illness. The part where I list the joys that are still plentiful in my life. The part where I feel pressure to say that I’m grateful for getting sick because it made me see beauty where I once did not. That now I know what really matters in life. So it’s all good.
But I won’t do that this year. It’s been 10 fucking years. I have every right to be angry that I’ve spent 10 years in bed. That I watch my friends and family travel, get married, have kids, excel in their careers, and move forward in life. I feel stuck. Trapped in amber. Preserved at the age of 27 except with more lines on my face, gray hairs, and a crappier metabolism.
Of course I know it could be worse. I am friends with people much sicker than I am. I have friends who have died. I’m a white girl in America with parents who can afford to help her. My privilege abounds. But because of the plentiful cheery disabled person tropes, people’s discomfort with their own mortality and the pain of others, our positive attitude focused culture, and the ingrained socialization women receive to be pleasant and meek, I have subjugated my own grief time and again over these last 10 years. So for today I’m sharing it with you. I’ll resume regularly scheduled Stepford programming tomorrow.
But I’d be remiss to say that my life of perpetual pain, fatigue, and loss is devoid of love and joy. It’s so not. I’ve got a kick ass boyfriend who genuinely enjoys taking care of me instead of doing it out of obligation, friends who never give up on me even when I disappear down a migraine hole for months, a niece and nephew that don’t see a sick person just their purple-haired Aunt Jenny, parents who let me and my cats move in and disrupt their swinging Empty Nest life without hesitation, a little sister who in many ways has become my big sister by taking care of me whether than means pedicures or help with errands, a Bestie/Braintwin who knows Jensen Ackles and the cuddles from Corgis can cure anything, my late babycat Cameron who was always up for spooning and never stopped trying to groom me, and a wee tortie Callie who is perfectly happy to spend her days in bed with me. These people love this Jenny. Even if she is broken.
I want to sum this up with some amazing wisdom I have gleaned from these last 10 years but all I can say is that it really sucks to watch everything you thought made you…well…you disappear into a fog of fatigue and relentless pain. It is devastating to watch what you hoped for the future, in my case a life of professional success, exciting travel with a loving husband, and maybe even a kiddo or two, disappear down the drain. The grief never really ends – it just ebbs and flows.
But it doesn’t mean I don’t have hope, gratitude, joy, love, and even excitement in my life. Doctors have found consistent, biological differences in CFS patients and the questionable studies that relegated it as a somatic disorder that only psychotherapy and exercise could cure are being disproven. I’m going to see the Old 97s play next month and am hoping for a trip to Colorado at the end of the summer to explore canniboid oil for pain relief.
So my great wisdom is that I don’t have to pigeonhole myself as the smiling disabled person who puts everyone at ease and is full of folksy wisdom. But I also don’t have to live solely in my pain, day in and day out. I can be grateful and grieving at the same time. I can look forward to tomorrow while being sad for that hopeful 18 year old girl that didn’t expect this future. To quote the 11th Doctor, “The way I see it, every life is a pile of good things and bad things. The good things don’t always soften the bad things, but vice versa, the bad things don’t always spoil the good things and make them unimportant.” Or better yet, to quote the TARDIS, “[Human beings are] so much bigger on the inside.”