On an ordinary day in 2008, my wrists started hurting. Like every other evening of that tour, I woke up, ate chow, strapped on headphones, and started translating to kick off the night shift. My work streamed in and out of antennas mounted on top of a repurposed Saddam-era bunker, nestled in a hard-packed dune on the outskirts of a military airfield about 90 miles west of Fallujah.
When folks ask what you did in the military and you say that you were a translator, they imagine you as a field operator, actively interpreting in the heat of tense negotiations. In reality, you mostly end up wearing those over-ear headphones long enough that your hairline has faint circular impressions pretty much all of the time, visible because you’re far enough from command that you can go a few weeks without getting your hair cut weekly.
I didn’t think much of the pain at first. I started using a special mouse pad and a little gel strip that ran the length of my keyboard to allow my hands a place to settle while using the computer. I later learned that these contraptions can actively destroy the median nerve, but back then I didn’t know much of anything happening to me or how to deal with it.
To an extent, not much has changed. I still don’t really know what is happening to me. The VA and I have theories, but theories don’t give me the ability to live as I once did, smoothing out a rough day by spending hours fiddling on the guitar or staying up too late to finish one last online gaming skirmish with friends. They don’t let me burn the feelings and stress of the day on the open road, feet pounding one after the other on a long run where no one is keeping track of distance or speed. Theories, I have learned, don’t treat the chronic condition I now live with, a condition likely tied to some type of toxic exposure from my time abroad.
I suspect many of my fellow veterans are about to embark on exploratory journeys of their own, thanks to the PACT Act, recently signed into law and rapidly being implemented by the VA. It is a necessary move in the right direction, but it’s not a panacea. This type of care is rarely straightforward, and the mere pursuit of care and answers take a mental toll.
Eventually, I went to medical about the pain in my wrists. A corpsman named Willie prescribed ibuprofen and told me to avoid overusing my hands. A few lines earlier in his medical notes, he indicated that my job required me to type 12 hours a day, seven days a week while deployed.
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Years later, I looked back at my medical records. I had some dim recollection of a diagnosis of carpal tunnel syndrome in 2009, but it hits you differently when you see objective evidence—no, this wasn’t a figment of my imagination. Willie was my witness. He did me a solid with that diagnosis, which I cited in an ultimately successful appeal in 2018 of my denied claim for disability benefits.
It’s a strange thing, disclosing that one, you are disabled, and two, you collect compensation for it. I’ve never fully reconciled either. To be disabled is to be less than able, which doesn’t sit right mentally no matter what pain receptors tell the brain about physical limitations.
To receive healthcare benefits and compensation through the VA for a particular condition, you typically have to prove three elements: an event in service, a current issue, and a nexus between the two. In some cases, veterans don’t have to prove the nexus. Rather, it’s presumed that if you served in a certain location during a specific timeframe, the issue you have is now presumptively connected to service.
It happened with Agent Orange—if you served in Vietnam while bombarding the jungles with toxic chemicals and then developed cancer, it’s presumed the two are connected. I can’t help but wonder about the native civilian populations not entitled to benefits of presumptuous compensation and healthcare.
Officially, I have chronic multisymptom illness, which is less a diagnosis and more an acknowledgment of a cluster of symptoms that elude existing diagnoses and that are shared by a group of people who all served in the Gulf at some point since the early 1990s.
When I learned of the presumption, I felt a jolt of hope. I felt seen. Here was a clear acknowledgment that a community who served where and when I did also dealt with these issues. It gave me hope for treatment and answers. I researched everything I could and started talking about it with fellow veterans. I reached out to my teammates from that bunker deployment to see if any of them experienced similar issues, seeking validation that I was onto something. Instead, I found mostly cynicism. My former team leader asked, “How do you know what you’re dealing with now was caused by some type of exposure?” This brought me back to a deeply unsatisfying answer: I really don’t.
I think, though I can’t quite be sure, that had I been shot in the kneecap and collected compensation for loss of full use of my leg, I would feel less guilty about compensation. The event in service would be completely clear—a bullet entered, served its wicked purpose, and continues to impact quality of life to this day. Case closed.
But to collect monthly compensation for a cluster of symptoms best explained by some undefined toxic exposure in service is, at minimum, more ambiguous and, at maximum, a gross abuse of the system. And while my diminished quality of life typically allows me to come to terms with the fact that I am compensated for this pain, the most common trigger of guilt stems from that ambiguity—how sure am I that what I have is related to military service? Sure, that bunker wasn’t particularly sanitary (in Operation Mickey Murder, we disposed of more than 30 mice with a couple of snapping traps over the course of a few days), and burn pit fumes wafted about from sites not far away. But what if, years from now, it is somehow revealed that I have a rare and previously undetected genetic condition causing my pain and that military service actually had nothing to do with it? How would I feel about the years of payments I collected by then? And, on a more practical level, would I have to pay them back?
I’m a lawyer, so the second question has an answer I’m equipped to suss out. But I have no method to deal with the first question, except for therapy, which does help. It does help.
When I arrived at college in 2010, I lived as normal a life as a veteran dropped in a sea of 26,000 undergraduates could live. College shone a light on identity in a new way—who am I really, and what is my place in this swirling, energetic slice of humanity? I thought of myself as a student, a transfer, a veteran, a classmate, a Marine, a guitarist, a friend. Never did I think of myself as disabled.
I learned that my occasional wrist pain could fall under the definition of “repetitive strain injury,” a common and unremarkable type of pain. It would flare from time to time, especially during a heavy writing period for things like term papers, but, as in 2008 when pain first crept through my wrists, rest would almost always lead to a full reset. Willie would have been proud that I mostly listened to his advice.
A switch flipped in mid-August 2016. Wrist pain became ever-present and more severe, and the pain would spread up my arms and into my chest if I didn’t quickly limit activity. I would get bouts of numbness and tingling in my extremities, first only my fingers and hands, but then shortly followed by my toes and feet. Sometimes even in my neck and face. My lips tingled inexplicably, and my calf muscles started twitching constantly. I also developed a slew of unpleasant gastrointestinal symptoms. Symptoms ebb and flow now. As best I can describe it, my tendons and muscles are particularly susceptible to overuse, so I have to be mindful of how much activity I allow myself in a day. The amount of activity I can stand fluctuates, so sometimes I can do more and other times less, but I often won’t know if I made the right choice until the next day.
In this new, unabating symptomatic phase, I had no choice but to cut back or eliminate some of my most common activities—typing, running, making music, and gaming with friends. In a flash, all my core stress relievers were more or less off the table.
I racked my brain trying to think of any type of triggering event. For years, I was convinced a tick had bitten me and I suffered from Lyme disease, never mind testing negative on every type of relevant test available. Relying initially on private insurance, I saw hand specialists who said there was nothing wrong with me, physical therapists who gave me exercises for related conditions in the hope that those exercises would also help with whatever the hell was going on, a rheumatologist who not so subtly implied that I was making up my condition, specialists in Eastern medicine and acupuncture, neurologists, primary care physicians, a psychotherapist, multiple dietitians … all to discover that no one knows the cause. Etiology unknown.
I also tried to find answers on Facebook. I found a couple of groups of veterans ostensibly suffering through the same condition. But since there’s nothing specific about chronic multisymptom illness, these groups basically consisted of people desperately voicing their declining conditions of any and all variety and warning others to enjoy life and mobility while they can. Facebook: hurling you into the downward spiral without apology. Would that fit on the masthead?
I’ve gotten used to my condition. I found through experimentation that a bizarre vertical keyboard reduces pain when I have to type, and I know all the ins and outs of desktop and mobile dictation software. I know that I can afford to strum a few chords on the guitar but that I need to call it quits at that pivotal moment when I start to slip into the music and get that feeling—that intoxicating, blissful feeling—that I could play straight through the night. I know that hot, hot heat helps, whether in the form of scalding baths or lamps that shine targeted infrared light. I found a topical cream that seems to round out the edges of pain. I have to wear pressure gloves whenever I’m working. At one point in law school, a classmate unironically complimented me on my fashion-forward fingerless gloves. So, I guess it’s not all bad.
But the reality is that I’m scared. In the long list of symptoms that fit under chronic multisymptom illness, the most disconcerting, at least to me, is deep brain fog. Take my mobility, take running and crafting music, but don’t take my ability to comprehend, to compose, to consider.
After a month or so on those Facebook groups, I had to leave abruptly. I read post after post of people talking about their physical conditions declining and of some faceless demon eventually taking hold of their minds as well. Was it a group of desperate veterans with diminishing resources whose mental health was evaporating for reasons completely unrelated to some type of toxic exposure, or were those posts a harbinger of my future? I don’t know. I just left.
I’d bet that the words “disabled veteran” for most people conjure images of elderly men in wheelchairs wearing hats emblazoned with the name of a U.S.S. Something. Or of someone hollowed out by PTSD struggling to find a job. This, I suppose, is the company I keep. It’s part of the reason I have a hard time adopting the disabled moniker. I feel like an imposter, despite the incessant reminders that I am, in fact, not able to live like an able-bodied person. They say the title of Marine is earned, not given. Perhaps the same could be said of disabled veteran. I think, but I don’t know for sure, that I earned this title. And I think, but I don’t know for sure, that if my event in service were crystal clear, I wouldn’t feel so frustratingly guilty for collecting benefits.
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I think we need to hear more from the quasi- and quietly disabled. The folks who are suffering but fear they are imposters in a community of those even less able. The folks who question every time they receive disability compensation whether or not it’s appropriate for them to receive it. The folks who join and rapidly abandon the Facebook groups allegedly speaking to their plights. The folks who aren’t sure what is happening to them but are damn sure that something is happening to them.
The determination of disability shouldn’t be left to a government entity—it’s an internal acknowledgment, empowering if the right chord is struck and devastating if ignored or otherwise poorly handled.
I am disabled. And I don’t think I will ever stop interrogating exactly what that means.