When I started copywriting for an advanced biotherapeutics maker, I had no idea that over the next 9 months a mysterious disease would cause disabling atrophy in my body and that my ultimate salvation would depend upon automatically injecting that same class of medication into my thigh every month for the rest of my life.
Perhaps it was because my body’s deterioration was so slow and incremental that 5 doctors missed the diagnosis.
My soon-to-retire primary care doctor was out-to-lunch and missed it.
My celebrity sports doctor who I saw multiple times for years as my symptoms emerged and progressively worsened missed it. I told him I was having chronic spinal pain: after a 10 second physical exam he declared it was overuse from kickboxing and prescribed deep tissue massage and dynamic rest. Being creative about getting a workout with uninjured body parts to rest the injured ones may be good advice for a person with a specific isolated injury; but for someone with an undiagnosed auto-immune disease dynamic rest can be a toxic prescription.
After a month of core strengthening exercises my back felt stable enough to resume jiujitsu class. One day after class I had pain radiating up and down from my biceps—something was very wrong. At first the sports doctor was puzzled to discover simultaneous double bicep tears, which is quite uncommon; but then he laughed and told me I was “just being a guy” working out too hard. As the tears were only partial he said: “what’s torn is torn” and prescribed dynamic rest and physical therapy. I suggested additional scans, which he deemed unnecessary.
Over the next 3 months each time my physical therapist and I thought we’d made progress, we’d discover the underlying bicep tears were not healing. Hypothesizing that walking to my desk job was overtaxing my biceps and preventing recovery we taped them everyday and I walked with my hands in my pockets to facilitate healing. This failed and my therapist and I grew increasingly frustrated.
Then one day, unrelated to injury and seemingly out of the blue, my right knee became a completely swollen and unbendable mass of pain . I was wheelchaired in to the emergency sports clinic where they drained my knee, tested for lyme disease, and gave me a cortisone shot. Later that week my sports doctor said the lyme test was negative and that he knew what I had–advanced osteoarthritis; “this is what you need” he said, handing me a promotional pamphlet for a gel shot medication featuring a picture of a septuagenarian dribbling a basketball. I was shocked because I’d never had any knee pain.
The sports doctor gave me gave me 3 gel shots and platelet rich plasma injections in my knee. Even two months after, no relief was to be had. Once again, he said I didn’t need MRIs, prescribed dynamic rest and gave me a link to a new calisthenics video he just dropped on Vimeo. With a modified position I could suffer through push-ups and planks along with his video, until I started getting shoulder pain. My leg was too stiff to bend but I shifted my weight to the other leg for plyometric jump squats. Between those plus the massively painful challenge of getting down to the ground and standing back up to follow his routine made my good knee hurt. Ecstatic to be breaking a sweat again, despite my disabilities, I congratulated myself for soldiering on through the exacerbated pain of my dynamic resting. A few days later I awoke with stabbing pain in both shoulders and two swollen knees.
My mobility was terrible, I was taking taxis and hobbling. I limped into the sports doctor to examine the other knee. I asked him to check my shoulders which were also in extreme distress, but he was reluctant to examine them at the same time as the knee–he wanted me to set up a separate appointment for it. I found this poignantly ironic having heard him stress the importance of ‘holistic treatment’ in sports medicine on his recent podcast; perhaps holistic treatment is reserved only for super-star athletes. He begrudgingly examined my shoulders for 10 seconds, laughed, smiled, and said: “sounds like overuse.” He sent me a link to his new Yoga and Pilates video that he just dropped on Facebook. The twisting from these “gentler” exercises only sent my spinal pain into overdrive.
Having exhausted uninjured body parts to dynamically rest with, I resigned myself to static rest. Unable to exercise to maintain any strength my shoulders continued to deteriorate until eventually I couldn’t lift my arms. Pinning my arm to the wall and shimmying it upwards was the only way I could change my shirt. My spine felt like it was on fire every night and was stuck in a loop of constant spasms. The sharp back, shoulder, and knee pain radiating across my body was so bad that I’d shower in the middle of the night which provided enough relief to sleep for a few hours.
I realized I’d been stupid to trust my sports doctor and my primary care doctor for treatment and guidance—I needed to take control myself. I started asking around for doctors that can diagnose unknown ailments. After I made an appointment with a world-famous rheumatologist, his assistant called to encourage me to cancel the appointment because as a highly active 45 year old I was unlikely to be suffering from a rheumatological condition. This unfortunate delay in seeing the only type doctor that can properly diagnose an auto-immune disease cost me many months of additional suffering and likely contributed to permanent joint damage.
Unsure what kind of doctor to see I begged and pleaded for a reknowned neurologist to see me within the month: when I saw him, he did a series of tests and expressed anger at my desperation in asking to jump the 6-month waitlist when my chronic joint pain and swelling was clearly not in his area of expertise. When I started to cry he suggested that my ailment might be psychological.
I returned to my primary care physician; he did some blood tests and said he didn’t know what was wrong and sent me to a physiatrist. The physiatrist said this wasn’t anything he could help with and sent me back to my primary care doctor who finally re-reviewed my blood work and realized that my inflammation markers were out of wack. He referred me to a rheumatologist.
The rheumatologist suspected I had one of three auto-immune diseases in the spondyloarthritis family but needed more testing to confirm. Physical examination, blood tests, genetic testing, x-rays a MRIs showing damage in my spine, both rotator cuffs, one bicep, and both knees was used to diagnose me. My understanding based on the rheumatologist’s explanation is that this genetic flaw, once triggered, makes my immune system unable to distinguish between healthy tissue and foreign invading matter such that my own antibodies attack my own body. The diseased immune system is devilishly efficient at hunting down any weak tissue, particularly in the joints, and instead of healing them, attacks them causing inflammation which can lead to destruction. The uncurable and progressive disease escalates through a series of flare ups, which if undiagnosed and unmedicated for long enough can cause permanent joint damage.
Ironically, the rheumatologist, used the laboratory facilities to diagnose me that were available to the celebrity sports doctor who misdiagnosed me for so long cavalierly dismissing multiple concurrent chronic symptoms as “overuse,” or “just being a guy,” before repeatedly prescribing dynamic rest that set me on a vicious cycle of injury, dynamic rest, and new and exacerbated injuries.
Before finally reaching a diagnosis the slow incremental atrophy of my body had left me in a severely weakened state. It was only during my physical examination when I explicitly articulated my pain points that I realized that the farcically long list of symptoms I’d accumulated over the past year was a disability that had massively depreciated my quality of life.
My knees had been constantly swollen for a year, most days I could barely hobble around the apartment. Stabbing pain in both shoulders and bicep pain radiating up to shoulders and down to arms made it difficult to get dressed, to bathe, or to lift anything.
Unaware that a chronic burning sensation in my spine was a symptom of the disease I wasted thousands of dollars trialing and returning mattresses. After much trial and error I discovered the only way that I can sleep without chronic muscle spasms during the day and night was to use a camping air-mattress on the floor, which I still use to this day.
The disease found its way up into my jaw making chewing painful and also caused inner ear inflammation and severe vertigo: the only remedy I found was a dental TMJ device that reduces the swelling by changing my jaw position. I have to wear the device all day long and I am embarrassed by how it has altered my speech articulation.
The disease moved into the joints of my hand. Two segments of my fingers on each hand had swollen into painful sausages. Moving the knuckles on those fingers was so painful that I could not open jars, plastic food containers, or carry anything more than two pounds or so. Those knuckles also developed psoriatic lesions.
The pain and stiffness in my joints is always the worst in the morning. I’d jokingly ask my family to let me shake off my ‘tin-man syndrome’ before joining our morning routine. When I first woke it would take me a while to rock out of bed, stand up, and disrobe to bath because the stiffness in my knees and shoulder made those appendages almost non-functional. After moving about a bit, getting my blood going, taking a hot shower a degree of range of motion would return.
The enduring rigamortis-like pain and weakness made me avoid activity which only exacerbated the muscle atrophy pain and weakness. Ordinarily innocuous tasks like opening a jar gave me thumb joint strain that became a new chronic injury. I couldn’t pick up or rough-house with my 7 year old fearful I’d get hurt. Every tiny bump and scrape came with the risk of chronic injury. I feared walking outside lest I get jostled. My wide frame and thick torso makes it hard to see weight loss or gain: even at the lowest point of my atrophy, externally, I may have looked more or less like the same big strong guy, but my internal damage was invisible. I felt like I had aged 35 years in the past 12 months and now had a taste of 80 year old frailty.
Two weeks before I was scheduled to start injecting the monoclonal antibodies my symptoms hit their worst point. The strong anti-inflammatory prescribed by my doctor had burnt a hole in my stomach lining, so I had to stop for two weeks until my advanced biotherapeutics were approved by insurance. During this stressful period in limbo, my symptoms were the worst they’d ever been, my body felt irradiated in fire. Armed with my diagnosis and a basic understanding how it worked, my imagination ran wild. Because this disease is likely triggered and exacerbated by stress, my growing fears amplifying my stress levels and accelerated my own antibodies’ attack on myself. For two weeks I was trapped in this hellish mental loop where every fear was translated by my immune system into antibodies–my dark imaginations like a demon scarifying me alive.
I imagined that my immune system, a ruthless hunter, had crawled up my cervical spine and into my jaw and caused vertigo and intermittent ringing in my ears—I feared hearing loss. The sharp pain in my spine and joints radiated down across my whole body. I propped myself up face-down on 7 or 8 pillows. It was summer and the air conditioner was broken. I was part of a sweaty mass of wet sheets, flesh, and pillows. I stayed in bed the whole week propped up this way, constantly shifting for a comfortable position that would also stop the room from spinning that always seemed perpetually out of reach, never sleeping more than a few hours a time. I thought that I would not wish this disease on my enemy. I told myself if I had known I might pass on this hereditary disease I would have thought twice about having children.
Monoclonal antibody injections don’t work on everyone and can’t cure the disease. But for the people they do work on, they can be highly effective in retarding joint atrophy; in this respect they are the closest thing to a miracle I’ve ever experienced. In the first days after taking the shots my tin-man syndrome receded almost entirely. For the next four weeks my myriad list of symptoms slowly receded in precisely the reverse order in which they appeared. The thumb pain left, the sausage fingers drained. After a few months my knee and shoulder joints calmed down and I was able to resume physical therapy. By reducing joint inflammation, the shots enabled me to build back muscle in my legs and shoulders.
I feel like the lights are back on in my body. I can bath and dress more easily. I am gradually walking better. Unfortunately, only my most recent symptoms receded entirely, and it appears that due to the prolonged flare up misdiagnosed for so long there appears to be some permanent joint damage. After a year of shots and 7 months of physical therapy while my quality of life is much improved, I am far cry from where I used to be when I was kickboxing—I felt like I used to be able to fly.
Ultimately the most effective pain reduction for this disease comes from exercise. If I do 1-2 hours of physical therapy I feel good for a day. If I do physical therapy for several days in a row I can feel consistently good and if I do it long enough say a week I might be able to skip a day or two before the pain returns. So you quickly work out that if you keep doing physical therapy you can feel good and that more of it logically can increasing strength and flexibility that ultimately improves your foundational strength for pain reduction. The problem is, the process is not linear and can be extremeley frustrating to both me and my physical therapists who want to see progress. If I want to feel good today I need 2 hours of PT, if I want to work more today then I just have to expect more pain–that’s the trade-off. On the days I feel good I’ll go to sleep optimistic that maybe I’ve made some breakthrough and things could be looking up. But then the next morning I wake up and the knee pain has reset. You start to feel like you’re stuck in some nightmarish loop, running on a hideously boring physical therapy mouse-wheel that is designed to drive you mad.
That said, I am extremely fortunate and grateful. There are so many people worse off than me. Before the advent of monoclonal antibodies people with this disease endured joint damage to the point that joints in their spines and limbs fused together becoming unusable. There are people who went undiagnosed for longer than 2 years during an intense flare up whose have suffered joint bone destruction. There are people whose pain is so bad they have had no choice but to go down the path of taking steroids for pain with all that entails. There is no objective measure of pain, I can’t say where my case exists on the severity spectrum, I can only share that this undiagnosed disease took me to death’s door, if only psychologically.
It might be said that the only form of pure activism is an individual in existential conflict who is fighting for survival. This is not just a story of an auto-immune disease. The disease is a gene expression that has likely contributed to my hyper-sensitivity, hyper-vigilance, that likely shaped my personality and my self-righteous disposition, my character. I am built this way, a high-strung jangle of nerves.
Between my flinching and tearing eye exams are nearly impossible. The dentist discovered four nerves during a root canal, which is like finding a four-leafed clover. When the dentist repairs my cavities even with 8+ shots of Novocain I am in terrible pain.
This is the beginning of the story of how my character in conflict triggered a natural immune response to the surveillance culture that surrounds us. My genetic hyper-sensitivity, my personality, and my character have led me to a point-of-view on the world that acknowledges:
–Historically unprecedented invasive digital distractions pilfer our ability to concentrate deeply.
–There are long-term brain health dangers associated with technology addiction and co-dependency on automation.
–The virtualization of everything culminating in an equivalence between surveillance marketing and physical surveillance.
This is a fight that the unchangeable elements of my character in conflict have drawn me into unwillingly, it is my response to pervasive surveillance culture.
My extreme attention deficit disorder makes digital distractions like a DDOS attack on my brain that occupies my focal bandwith and sadly derails my life story. Being no longer able to physically tolerate ADD medications, I’ve hacked together alternative treatment.
I’ve found a way to retool passive addictions that drive tech provider agendas into active habits that drive mine. I want to share these ideas and learn about your own. We must do this, because pushing the needle on such a high-change threshold societal problem requires collective action.
We must industrialize our personal unplugging solutions to share the benefits with each other. If we can make conscientious active digital technology use a consumer demand then we have the power over customer-centric technology providers who must cater to our needs. Let’s make digital hygiene the new cost of doing business.
My natural immune response to the surveillance culture in our environments contributes to the inflammation stretching from my cervical spine to my jaw, my shoulders down through my elbows and finger joints, through my entire spine, and from my knees down my shins. This is a cause I cannot put down. Irradiated and tempered in this conflict, I am irrevocably bound to the discipline of unplugging as an advocate for Active Tech.
Stay tuned for more.