To Work or Not to Work – Employment and MS

(For those who receive these posts via email, this essay contains videos which can be viewed on the Wheelchair Kamikaze website – click here.)

Multiple sclerosis can be a wrecking ball of a disease, its potential effects threatening to impact virtually all aspects of life. Though the newest MS therapies offer many patients the hope of extended periods of good health, MS sufferers nevertheless find themselves constantly adapting to the challenges thrown at them by the disease. In addition to obvious problems such as those related to mobility and coordination, other more invisible symptoms can be equally problematic. Cognitive difficulties and extreme fatigue can be just as crippling as weakened and numbed extremities. Relapsing remitting patients never know if and when the next attack is going to hit; progressive patients must learn to coexist with their illness as it carries them down a slope of ever-increasing disability. The stress and uncertainty of chronic illness adds exponentially to the already demanding nature of modern life.

MS strikes most of its victims when they are relatively young, well before most would ever otherwise consider leaving the workforce and retiring. Unfortunately, MS forces this issue for significant numbers of those it afflicts. Despite the sunny image of MS often portrayed in the media, numerous surveys and studies have found that a high percentage of MSers find themselves forced into early retirement by the disease (click here, here, and here). Surprisingly, studies conducted in Europe discovered that as many as 50% of people with MS stopped working within five years of their diagnosis, well before many of them manifested obvious signs of physical disability. Instead, cognitive issues (such as memory issues and “brain fog”) and fatigue led many to early retirement. The findings of some of these studies may not be entirely accurate today as they include information on patients who became ill before the current crop of more effective therapies became available; nevertheless, MS related employment issues are a reality with which those afflicted with MS continue to grapple.

The prospect of lost jobs and reluctantly terminated careers can be one of the most frightening aspects of the disease for working MS patients. We live in societies that often conflate what we do for a living with who we are, and many find their sense of self intimately entwined with their work life. In addition to the obvious worries the potential financial impact of leaving the workplace can engender, the psychological toll of merely anticipating such an eventuality cannot be overstated. Patients often fear the loss of their jobs as much as the potential physical deterioration associated with the disease, and many hang onto their jobs for dear life, a sense of failure accompanying any ruminations of quitting the workforce.

I suppose in a strange way I’m lucky that I never felt wed to my career. Despite the fact that I managed to be successful in a highly competitive industry (TV and video production), I always felt some dissonance between who I was and what I did, as if I had strayed from my path and could never quite find my way back. Truth be told I just never loved working, least of all in some of the highly corporate environments in which I found myself toiling during some points of my career. There are those who thrive within the structure of a buttoned-down business environment; I felt as if I was being slowly suffocated. I enjoyed the titles associated with my working life (Producer, Director of DVD Production) much more than I actually liked the nuts and bolts of the jobs themselves.

Compared to many other patients, my disease struck hard and fast. My last day of work came less than four years after my official diagnosis. As my initial symptoms were all physical (increasing paralysis of my entire right side) and soon became abundantly obvious to all but the least observant, I made no attempt to hide my condition from my employers, who were gratefully quite sympathetic and supportive. They allowed me flexibility in my working hours and never gave me grief about time taken off for doctors’ visits or treatment sessions. My decision to go on disability was practically made for me, as the facility in which I was employed appeared threatened with closure and those in charge gave me fair warning that I could lose my generous disability benefits should the place shut down. Though I held on as long as I reasonably could, my creeping paralysis eventually made simply getting to work completely exhausting, never mind the physical toll of working a full day, and when the end came I felt more a sense of relief than anything else.

I spent the first two weeks of my “retirement” in full recovery mode, my body and mind finally able to take a few deep breaths, and though I did go through a time of existential uncertainty, I adapted quite well to my enforced life of leisure. At times I absolutely reveled in my newfound freedom to do whatever I wanted when I wanted to do it, albeit within the confines imposed by my illness. The support of my ever indulgent wife was (and is) beyond value, as I used my newfound liberty to pursue interests and penchants that had long lain dormant or ignored. Though some of the time since I left work has been spent on activities the less enlightened might deem frivolous (like watching lots of zombie flicks), some of my other endeavors hopefully have had some socially redeeming value (like this blog). Even now, with the grip of my illness growing ever tighter, I’m quite happy to be gainfully unemployed. Can’t say I’m having as much fun as I did earlier in my retirement, but freedom is precious whatever the cost.

I’m very much aware that my experiences leaving the workforce – from the days preceding my retirement to those after it – are hardly typical, but I’m living proof that the transition need not be filled with trauma and woe. Certainly, those with a deep affection for their work should be rightfully loath to give it up, and for many, even those with obvious disabilities, forced retirement can be held at bay for quite a while, perhaps even indefinitely. There are strategies and methods that can be used to prolong employment, particularly if employers and colleagues are made aware of the situation and cooperate in the effort.

Many wrestle with whether or not to disclose their illness in the workplace, and this decision can be highly dependent on the nature of the work as well as the culture and environmentin which the patient is engaged. A recent study found that those who do disclose their multiple sclerosis are more likely to remain working longer than those who do not (click here). Almost all developed countries have laws prohibiting discriminating against disabled employees, and require that employers make reasonable accommodations for those with disabilities. Once disclosure has been made, the psychological burden of keeping an illness secret is lifted, and that alone can ease the grind of getting through the day. Working hours can be made flexible, responsibilities can be shifted, and telecommuting can be a viable option for many. One of my good MS friends is a lady who relies on a power wheelchair to get around but nevertheless remains successful at her media sales position through a combination of fierce tenacity and the accommodations she’s worked out with her employer. A terrific resource for learning about employment accommodations for the disabled is the Job Accommodations Network website (click here).

Regrettably, not all working MSers are able to remain employed indefinitely. The decision to finally leave work can be one of the hardest faced by a patient. Financial considerations are of course a huge part of the equation. Here in the States, having private disability insurance certainly makes the decision to leave work much easier, especially since Medicare and Social Security don't kick in until two years after long-term disability status has been established, and for many these programs only cover a small fraction of what they were previously earning. MSers in the United States should, without question, max out on any private disability insurance offered by their employers. Other countries with stronger safety nets at least partially alleviate this consideration.

Financial considerations aside, ultimately the decision to leave work because of MS disability often comes down to not only whether or not a person is still mentally and physically capable of completing their job requirements, but also soberly assessing whether the daily grind of working is taking a deleterious toll on the patient and negatively affecting their physical well-being. It’s incredible what people can endure, and the insidiously incremental nature of MS disability can often mask the multiplying effect the toil of struggling to stay employed can have on a body battling the illness.

Despite my obvious physical problems, I didn’t become completely aware of just how negatively working was affecting my health until after I had taken my leave. Only then did I become fully conscious of how physically and mentally exhausting my continuing to work had become. Most of the first few weeks of my retirement were spent sleeping, my body gratefully soaking up the rest it so desperately required. After that much needed period of decompression, I started the slow but ultimately gratifying process of redefining myself, in a sense becoming reacquainted with parts of me that hadn’t seen the full light of day since my youth. Happily, the end of employment is by no means the end of life itself, and indeed reclaiming time that would have otherwise been spent working affords one the opportunity to chart a new course, perhaps one even more suited to the individual than the one so grudgingly given up. It’s often said that every exit is an entrance, a truth I found embodied by my transition out of the workforce. I always said I didn’t live to work but worked to live, and now I can simply live.

That said, I know how important and meaningful work can be in the scheme many people's lives. The following videos, produced by the National Multiple Sclerosis Society, provide valuable info and insights on strategies for managing workplace issues associated with MS, and maximizing the ability of patients to continue working…

Every Exit An Entrance: Three Years on Disability

Image by Dan4th via Flickr

Today is the third anniversary of my leaving work and going on long-term disability. The universe being the lattice of coincidence that it is, today is also the 20st anniversary of the day I started the first job of what would be my career, TV/video/film production. Kinda weird symmetry, but so it goes...

Naturally, the day brings mixed feelings. I think back to January 18^th, 1990 with a fond sense of nostalgia. I was 26 years old, probably a bit late to be starting my first "real" job, but I spent about five years nurturing the delusion that I was going to be either the next Johnny Rotten or Jack Kerouac. I'd loudly and obnoxiously sworn off ever working a real job, but the combination of cruel fate and the hard realities of such little matters as shelter and eating forced my hand. A bizarre set of circumstances (including a missed train and a punch in the eye) landed me in Fort Lauderdale, Florida, pretty much flat busted and sleeping on my mother's couch.

With a degree in film from Boston University in hand, I managed to land a job as Associate Producer of Local Programming at Continental Cablevision of Broward County, the local cable TV outlet, for a salary barely above minimum wage. Even at that paltry sum, I was grossly overpaid, because I didn't know my ass from my elbow about much of anything, much less producing video programming. It was strictly the cachet that a degree from Boston had in South Florida in those days that got me the position.

My first assignment was to cover "Horatio Alger Day" at a local high school that was largely populated by impoverished kids from the wrong side of the tracks, who could do with a bit of inspirational hokum. I was sent out with a camera and an intern who knew even less than I did about the nuts and bolts of video production. I did my best at videotaping the event, and even did an interview with the keynote speaker, the founder of the Wendy's hamburger chain, Dave Thomas. When I got back to the studio and reviewed the footage, it quickly became embarrassingly apparent that I had forgotten to white balance the camera, and all of the images I recorded were tinted bizarrely orange, looking a lot more like they were shot on Mars than in Pompano Beach. And thus began my brilliant career.

Fast forward 17 years, to my last day of working at one of New York City's premier video and audio production facilities, as the Director of DVD Production, where I'd played a large part in putting out some of the best-selling music related DVDs in the history of the format. I'd been diagnosed with Primary Progressive MS nearly 4 years earlier, and the fracking disease had whacked away enough of me to make the decision to go on disability not much of a decision at all. Preferring to not engender either sympathy or pity, I composed a parting note to my coworkers that I intended to send out at the very end of the day, and requested that my higher-ups not do anything special to mark my departure.

Much to my chagrin, they ignored my request, and put together a little farewell party for me, complete with cake and champagne. Although I thought I would be mortified at such an event, it turned out to be a nice way to put some psychological punctuation on that chapter of my life. I'll always treasure the experience of having two of my most junior people, part-timers both younger than I was when I first started out, tell me that they didn't think they'd ever have a better boss, because they felt like I truly cared about them. Knowing a little something about my back story, the two gave me a book of photos of New York's punk rock scene in the 1970s. I think there's still a mark on the inside of my lip from where I had to bite it to keep from blubbering.

Well, it's been three years since that day, and I've gone from Director of DVD Production to Wheelchair Kamikaze. On my last day of work, I struggled out of the facility wearing an ankle brace, not even needing a cane. These days I spend much of my time with my ass firmly planted in a wheelchair. Thankfully, it's one that goes fast. I've grown fond of saying, "Go fast, even if your fast is slow".

Though some find the transition from working to disability jarring and traumatic, my experience was anything but. After an initial couple of weeks during which I felt compelled to call the office every day, I quickly adjusted to a life that was increasingly limited physically but was also suddenly filled with the freedom to do what I wanted to do when I wanted to do it.

It seems almost forbidden to admit this, especially since I achieved a fair measure of success in a very competitive, high profile industry, but the truth is that I never really liked working. To be completely honest, in many respects I hated it. The only job I truly enjoyed was that very first one, way back in Florida, when I made no money but spent my days shooting and editing video, writing scripts, wiring up video setups, and getting my hands dirty. As my career progressed, and I experienced "success", I became more of an administrator, and at times I felt like a prisoner, a captive to my own achievements. In the middle of my career, I had a couple of jobs which required me to put on a tie every day, and every morning I silently cursed as I slipped that silk noose around my neck.

My last job, the DVD gig, was much more gratifying, but I think that feeling had its roots more in knowing that I had made it to the major leagues than in the actual day to day work I was doing. It felt a lot better saying I was the "Director of DVD Production" for a music industry giant than it felt actually being it. In 18 years, I'd gone from screwing up "Horatio Alger Day" to directing a department that put out mass-market product that sold hundreds of thousands of copies, but I felt that I had somehow strayed far off my path, and I yearned for the freedom of my younger days, when chasing dreams trumped chasing dollars.

How odd, then, that this insidious, hateful disease has provided me the out I coveted. I've learned a lot about myself these last three years, and some things about others as well. I've gained some insight, and maybe even some wisdom, which I've tried to share, with varying degrees of success. Attempting to save my own ass, I've learned more about MS than about any other subject I've ever studied, and I've tried to communicate that knowledge too, so that other backsides might also be saved.

It's quite possible that all of this insight, knowledge, and learning may very well prove powerless in the face of the creeping paralysis that continues to afflict me, and certainly there must be much more benign ways to achieve self-awareness. But, like it or not, this is my lot, and I owe it to myself to make the most of it, and in some way try to imbue the experience with some measure of meaning. Faced with a constant reminder of the preciousness and frailty of existence, it becomes apparent that time should not be wasted.