On Being Bedbound
I’m writing from my hospital bed. It’s been over two and a half years since my Orthopedic physician said: “By the way, that burning, gnawing pain you feel from your waist down is ‘adhesive arachnoiditis’. It’s intractable, and there is no treatment”. The neuropathic (nerve) pain I felt day and night had a name, aside from my previous spinal cord injury.
Adhesive arachnoiditis sounded awfully familiar, even if I didn’t know immediately what it meant. Sure enough, the diagnosis had shown up in previous MRI reports. None of the Neurology, Physiatry, Rehabilitation or Pain Medicine specialists who had ordered the MRIs had said one word about it. Most days, adhesive arachnoiditis feels as if my body is dunked in cold water, while inside, someone’s pouring molten lead.
As a Physician Assistant student in 2006 I followed a curriculum closely aligned with medical school lectures at the University of New Mexico. Lumbosacral adhesive arachnoiditis did not seem exist, for the next generation of medical providers. Although Adhesive Arachnoiditis is listed under the National Organization of Rare Diseases by the NIH, this neuro-inflammatory condition may be much more common than the medical community, and patients with intractable back pain, assume.
The innocuous sounding ‘arachnoiditis’ though does not adequately describe the nerve bundles in the sacral and lumbar plexus clumping to one another. Normally, the lumbar and sacral nerves are free to sway back and forth in their protective bath of cerebrospinal fluid. Adhesive arachnoiditis prevents that. Adhesive arachnoiditis causes such severe pain, most patients cannot stand upright for more than a few minutes, before feeling the urgent need to bend over, or lie down.
Perhaps that is one of the most telling feature of the disease, an inability to stand straight for more than a few minutes. Additionally, it feels as if I am walking on glass, or rather, my own bones. Which was already evident, as atrophy from my existing spinal cord injury had thinned the padding beneath my feet. This, and muscular atrophy of my calves, prevents walking anything more than the distance between my hospital bed and my bathroom or kitchen, in my 550 sf studio.
My lumbosacral adhesive arachnoiditis was caused by trauma, but most likely worsened by iatrogenic injury. It can also be caused by chemical injury associated with pantopaque dye used for CT scans, infection, or repeated back surgeries, known as Failed Back Surgical Syndrome. In my case, I survived a devastating nighttime skydiving accident in 1992. I landed on my sacrum at 70 mph, and immediately lost 2 inches of spinal height.
The sacral nerves were ripped off or crushed, T12 and L5 were also fractured. One of the immediate neurological consequences was that I had no longer had a working anal sphincter. Retroperitioneal bleeding further injured, and bruised, the lumbar plexus. I was diagnosed with ‘cauda equina syndrome’, an incomplete spinal cord injury that affects lower extremity muscles, bladder, bowel, skin sensation and sexuality.
Ten months later, I was discharged with leg braces, a cane, and a sports wheelchair for basketball. Fast forward a decade. I was happily dating and had a scholarship to New Mexico Institute of Mining and Technology, an excellent university south of Albuquerque. Unfortunately, in the Spring of 2000, I had an unexplained 105 fever, the worst headache of my life and severe leg spasms. It felt I had no choice when the small town ER doc recommended a lumbar puncture.
I asked ‘Dr Butcher’ to be careful, and explained about the spinal cord injury from L5-S5. The moment the needle went in I screamed. The searing pain from that lumbar puncture remains a vivid memory, followed by years of increasing pain with sitting and walking. I already carried pillows everywhere since my skydiving accident, but my sacral, lower back and even trunk pain intensified. My lower leg muscles atrophied more, despite regular exercise.
Around 2005 I was diagnosed with another spinal cord injury, a T4 chest level hemangioma (benign vascular tumor), thought to be caused by landing at 70 mph years earlier. This causes ‘central neuropathic pain syndrome’, common in patients with hypothalamic stroke. This is also considered an intractable and untreatable condition; normal sensations like clothing, breathing and any kind of light pressure hurts.
The burning sacral pain hampered my PA studies so much however, that I resorted to epidural steroidal injections (ESIs) in 2006 and 2007. It is quite possible that those ten, twelve ESIs further irritated the damage that was already there. Vigorous exercise may also have worsened the atrophy, as that is a real risk for patients with incomplete spinal cord injuries. The pathophysiology is much like that of Post Polio Syndrome (or was simply a side effect of the progressing adhesive arachnoiditis).
It’s not too farfetched to conclude I’m a Type A gimpy, as an ex-stunt woman and mountain climber. I don’t do moderation well. The years passed, a marriage came and went, and I became a shell of a human being, so frail and in so much pain that I could only work part-time as a Physician Assistant. In March 2016 I fell out of my wheelchair, my sacrum hitting the concrete hard. Ironically, I had tilted my wheelchair sharply against a wall, as I tried to take pressure of my lower back by mimicking a zero gravity chair.
And yet, it is still a tad embarrassing to admit that I now live in my hospital bed, 22/24 hours. Despite the fact that I was hospitalized three times between December 2015 and March 2018, it feels like defeat. I let myself and society down. I am not a productive member of society. Yet life goes on, and for the last two years I have kept up my remaining strength by taking my power wheelchair to a nearby gym. I swim and do my PT exercises in a heated pool three times a week.
By far the strangest thing that has happened though, was that after my adhesive arachnoiditis diagnosis I couldn’t stop writing comedy. In three weeks I filled up an entire notebook. I now perform stand up comedy at a local pub weekly. Well, almost every week, with the exception of disability related setbacks, of which there are too many. I try though.
Last month I even did a great 16 minute set and opened for comedian Curt Fletcher. Although I made a 100 people laugh consistently, and reduced many to giggles, some days I still grief my old life as a working PA. I was good at my job. Having a chronic disability can be lonesome too. Over the years, friends have hastened away like circles in a lake, the water pierced by a stone. I felt like that stone, sinking deeper and deeper until stuck in the mud below forever.
Surviving on disability payments under the poverty level, as I hadn’t worked long enough, and feeling marginalized, has taken a toll. And yet, through writing and comedy and much heartache, I discovered how much awesomeness hides in my life as a muddied, useless stone. Strangely enough, I feel stronger than ever before, and even a little attractive despite permanent bedhead. I found a way to connect my humanity to an audience and my true self. That couldn’t have happened without going through the deepest valley of my life.
In 2017, my pain levels were at a 9 daily (I reserve the 10 for the skydiving accident). I had no choice but try ketamine infusions, as I no longer wanted to live. I ended up doing nine ketamine infusions as an outpatient, and I was also hospitalized twice for a weeklong, 24/7 ketamine IV treatment. I’m still in pain, I’m still bedbound, and ketamine is not a cure. But it temporarily halts the worst of the neuropathic pain, and lately I have the impression that it dampens the inflammation.
My pain is better treated, and during my last weeklong infusion, went from a nine to a zero while hospitalized. Good timing, it even temporarily healed the pain of a broken heart, as my boyfriend and I had just broken up. Centuries from now, humanity will look back at this bleak chapter in medicine and Pain Management. Every patient with chronic neuropathic pain ought to be offered the option of affordable ketamine treatment, without having to sell their home and car, like I did.
Every day is an adventure. I never know if I will be able to take care of normal, daily things like prepping a healthy salad, or if I will be passed out, lying on my right side in fetal position eating a bag of Lay’s Lemon potato chips, the perpetual icepack on my sacrum. I write sideways, wedged between pillows to decrease any pressure on my sacrum, and usually can write no longer than an hour a day.
Surprisingly, all those hours added up to a Kindle Single, ‘The Queen of Ketamine’. It’s a mini memoir of my forays into pain medicine and comedy, and will be published June 28, 2018. Most importantly, I no longer feel like a discarded, sunken stone, cut off from civilization. I am part of this life and this society, in my own way.