Figuring it Out

Writing to Make Sense

Writing has always been my way of trying to figure things out, to try and understand whatever puzzles me, people mostly—all the way back to when I was a geeky glasses-clad teenager and first trying to understand my family and my place within it. As a 47 year-old I have even more to come to terms with than I did back then. More sense to try and make; more to write in order to try and make some sense.

These days, however, reflections and recollections surface and coalesce slowly, bubbling up through my body from toes to brain like blobs in a lava lamp. Slowly. Slowly. It’s work to think. To find and build words into sentences. The doctor suspects it might be the lingering effects from my COVID infection over a year ago, but it could also be the brain fog that accompanies the auto-inflammatory arthritis I was diagnosed with in 2012.

My body teems with inflammation. Twelve years ago it knocked me out of my daily working world of running and repairing computers and AV equipment. I took to bed and slept and slept. Auto-inflammatory arthritis is a systemic, whole-body response affecting joints and bones but also internal organs and entire body systems. It’s not to be confused with osteoarthritis,the wear and tear of aging. No part of me is safe from heat and swelling, but because I was seemingly snatched out of the everyday world without witness, I turned mostly invisible, seen only by my cats and some family; a strange opacity that adjusted depending on whose company I was in.

Whenever Co-workers and others chanced to run into me in the grocery store or the coffee shop they continually exclaimed You don’t look sick!… The ellipse indicating skepticism in the absence of cane or wheelchair or disfigurement.

There was no visible damage on X-rays yet nor nothing amiss in my bloodwork despite 11 years of symptoms before my diagnosis. My joint pain and difficulty breathing could not be objectified so I was met with skepticism from the medical community. Medicine only believes what it can see in scans or beneath its microscope. The rheumatologist who diagnosed me, though—an expert not just by training but because she had it, too—she knew. She saw me.

I was 36 years old when she put a name to my hip, knee, low back, and shoulder pain; the chest constriction; and achilles tendinitis: Ankylosing Spondylitis, an arthritis of the spine that leaves no large joint untouched, nor the rest of the body it inhabits. I turned 36 and my living irrevocably changed. By 37: Social Security Disability Income, Medicare, and low-income disability housing. In high school I was voted most likely to succeed but there I was in the local Social Security office applying for benefits: very much not succeeding. Where was the meaning in this?

Unable to work and unable to sit up upright for than a couple of hours at a time, whenever I could I thumbed through photos of my mom and I—together, singly, then with other family in the frame. I was trying to figure out how I had become marked for this disease. There is an associated genetic component, a gene called HLA-B27. Could I see it in the photos somehow? Could I see who gave me this gene? Soon I got distracted by just how much my mother and I differed in appearance from the rest of the family and that became the focus. The genetics regarding appearance didn’t lie—our dark hair and eyes and complexion vs the fair hair and skin of the others. The photos made these differences too hard to ignore.

In the early days of my diagnosis because my mind was still sharp I thought about these differences a lot from behind my bedroom’s blinds, stretched out on my bed beneath the skylight as I watched the trees that towered around my little cottage swaying in the wind. It would be 6 years before I learned the truth about the family tree—the identity of my mother’s biological father and who we descend from, and why he was kept a secret—and when I did, I couldn’t unsee the parallels between my illness and symptoms and the invisibility of my Sinti¹ “gypsy” relatives murdered in the concentration camps of WWII, as invisible in death as the German State made them in life.

A few more years passed and then another unthinkable admission: my grandmother had had a second brother named Werner. The youngest of three siblings and disabled, he was murdered as part of Aktion T4, the Nazi Euthansia Program². Just two months after his third birthday he was killed via luminal and phenobarbital injections. He was never talked about again.

These absences from family history, this invisibility: I don't see the relationship between them and my illness as one of causation, but of correlation, and it’s occurred to me in recent years that by uncovering and telling these stories of omission perhaps I can find meaning in the turn my own has taken.

I’ve tried to hold on to the person I was before I got sick, but I am no longer that person and haven’t been for quite some time. I remember the me I used to be, though, and whenever I close my eyes I watch myself:

• shelving books at the town library

• carrying a cousin around on my back when he had the chickenpox

• cleaning toilets for my uncle’s cleaning business

• clearing tables and hefting a bus bucket filled with white china while sliding over sauce-slicked tiles

Strong.

I used to be a helper.

• I listened to folks struggling with torments of the mind, pills, needles, and the bottle.

• I found new homes for kids with difficult families

• I fed and bathed elderly folks who couldn’t feed and bathe themselves; I watched a some of them die.

For a handful of years I also fixed every kind of computer problem you could imagine at an insurance company, and then moved on to repairing and installing classroom technology at a private, 4-year college just down the road. That tech job in higher education is the last job I held before I became unable to work.

I’m the one who needs helpers now if I let myself be vulnerable enough, but… sometimes I just want someone to fix me.

At my doctor’s urging I went back to school to keep my mind active as I worked to get my body well, and I had hopes that this would help me to make a career transition, but life rarely goes as planned. The illness is still here 11 years after it was diagnosed, and I’m no closer to being able to work again. How naive I was.

It never occurred to me that my time out of work could stretch on for so long. And on and on.

I don’t regret accruing the mountain of scholar’s debt for the ivey league MA even though said debt will loom over me until I die, because it enabled me to attend a program at Oxford University, a dream I wrote about in a tattered middle school journal. Nothing can take away the memory of being greeted by the Radliffe Camera each time I sat down at my desk beneath the window to write, the early morning strolls to get coffee amid the din of bicycle bells, or choir voices escaping the chapel during afternoons or early evening.

Dreams are still important when you’re perpetually unwell. Maybe more.

Being chronically ill in the United States sees to it that you live hand to mouth and have nothing much to show for yourself materially speaking—no house, no land, no savings. No things that you grow up believing are the mark of adulthood.

There are days I sit with my head in my hands.

There are days I trade one pair of pajamas for another.

There are days I leave the shades down.

Eleven years later, I still want that first rheumatologist to have gotten it wrong. I wish that the other doctors along the way have continued to get it wrong, too, and that I will receive a phone call or be told during a visit that I actually have some illness that is treatable. This kind of hope doesn’t feel so great. It’s more of a delusion. A hopeful delusion. A delusional hope.

I’ve been through all the medications in the last eleven years, however, and have reached an endpoint mostly when it comes to what medicine can do for me. Science is always advancing, though, and new medications being developed so more possibilities on the horizon and I believe in science so this is a happy kind of hope.

On the good days, when I don’t wince in pain as I roll over in bed, when the pain in my lower back is nearly gone, when upright locomotion doesn’t take so much energy, when I’m able to breathe freer, a more constructive sort of hope hovers in the air around me and I am able to ask myself the hard questions:

How do I move forward despite my physical limitations?

How do I make sense of the family silences and ommissions and their connection to my illness?

How do I find the words to figure out and make sense of this inexplicable relationship on paper so that maybe it could help someone else, too?

1. https://www.sintiundroma.org/en/introduction/sinti-and-roma/

2. https://encyclopedia.ushmm.org/content/en/article/euthanasia-program