Disability Retirement- A Broken System

I don’t even know if disability retirement is the correct term, but that’s how I usually describe the fact that I no longer work. Actually, today is the four-year anniversary of my last day at the office. I believe this milestone gives me the right and perhaps the obligation to stand on my soapbox and editorialize for a moment.

The creeping paralysis that I’ve endured over the past 12 years has taken its toll. But no loss was more acute than being considered fully employed one day and completely and permanently disabled the next. Of course, that is not how chronic diseases really behave, but it is how disability policy does. My transition out of the workplace should have been a slow, gentle process. Maybe I’ll write about that in more detail later, but it’s not the primary objective of this blog post.

Other than its somewhat arbitrary date, my transition into disability retirement couldn’t have gone better. I had several things in my favor. First, I worked for a company which offered long-term disability insurance as part of their benefits package. Therefore, I now receive more income than people who rely solely on Social Security disability checks.

Second, Kim has a secure job with a good salary. This means that we still have enough combined income to maintain a comfortable lifestyle and enjoy a certain amount of financial security.

Third, Kim’s medical insurance policy covered me for the 2½ year waiting period between the time I stopped working and the time I qualified for Medicare. That’s right – when you become so sick that you can no longer work, and you subsequently lose your medical insurance which was provided by your employer, Medicare waits 2½ years before stepping in. That makes a lot of sense.

Fourth, the medical benefits I receive through Kim’s insurance will continue to supplement my Medicare policy until she retires. As anyone over 65 years old knows, Medicare falls short of complete coverage in many respects, not the least of which is prescription drug coverage.

I am, however, the exception to the rule. Most people who take disability retirement because of multiple sclerosis or similar chronic conditions are not as fortunate. Many such individuals find themselves without affordable medical coverage for the first 2½ years and without adequate income for the rest of their lives. And these hardships occur when things have never been worse, medically or financially. Their cost of living has skyrocketed because this is such an expensive disease to live with. It’s not only the costs of doctors, hospitals, and medicines. There are also the expenses associated with mobility devices such as canes, scooters, wheelchairs, and vans, not to mention home health care workers, roll-in showers, ramps, and grab bars, if not an entirely new house.

For a well written, first-hand account of what I describe above, please read my friend Muff’s blog post here.

No other developed nation treats their most disadvantaged citizens so callously. It’s no way for people to live in the 21^st century, in the world’s richest country. We are better than this.

I believe that most people aren’t even aware of how weak our social safety net is for people with chronic diseases. I certainly wasn’t until I became well-versed in these issues out of necessity about four years ago.

In the current political environment, government austerity measures seem inevitable. We are only debating the severity of the cuts, and the new levels of acceptable misery. I would argue, however, that the question regarding benefits for disabled individuals shouldn’t be, “How much less can we get away with doing?” The question should be, “How can we do more?”

Consider These Issues…

…because I can’t decide on just one topic this week.

Quote of the Week

“There's a whiff of the lynch mob or the lemming migration about any overlarge concentration of like-thinking individuals, no matter how virtuous their cause.”  - P. J. O'Rourke

Kiva

Microloans are a wonderful way to add a little intimacy to your charitable giving. I’ve chosen a platform called Kiva.org where I can learn about all the loan candidates and choose an individual whose business plan or cause appeals to me. I put a certain amount of money in a fund with lots of other folks, and each month the borrower makes a payment to me and the other lenders. The borrowers do pay interest, but that doesn’t go to me. That goes toward maintaining the program. My plan is that once my initial loan is paid back, in approximately a year, I’ll keep my money in the bank and make another loan, and so on, and so on. Check it out.

The Reliability of Medical Research

I’ve always considered the gold standard for medical research to be studies that are double-blinded and placebo-controlled. This means that there is a group of patients receiving the treatment and there is a group of patients receiving a placebo, and neither the patients nor the doctors involved with the patients know who is who. Only in this way can bias be eliminated from the results.

However, this article shoots holes in that standard as well, and I have to agree. As long as there are financial or career advancement incentives to produce certain results, usually positive results, bias can find its way into even the most rigorously designed studies. Damn.

Be Suspicious of Stories

As human beings we love to hear a story. We want the world to make sense, and stories often leave us with that comforting impression. In our stories however, we impose order and meaning where often there is none, and this can be misleading.

Of course, you could argue that this Ted talk is itself a story, but that just makes my head hurt. Please watch this and let me know what you think.

15 Things That You Should Give up to Be Happy

I’m not 100% bought into the whole Zen philosophy thing, but I find much of it to be very practical advice. A lot of this thinking runs counter to the Type A personalities that serve as models for success in the United States. This article suggests 15 personal characteristics that we would be better off without. I agree most strongly with items 3, 6, 9, and 15.

The Most Astounding Fact about the Universe

Neil deGrasse Tyson is a brilliant astrophysicist. Recently, he was asked the question, “What is the most astounding fact that you can tell us about the universe?” I very much like his answer – which he gives in this three minute video.

De-extinction

As is so often the case, science fiction may have had the right idea, in the form of the movie Jurassic Park. But this video doesn’t sound nearly as scary.

A Farewell Mother’s Day Present

The photo to the left is from Mother's Day, 1972. I'm the pink shirt guy.

My mother passed away in the autumn of 2008, so it’s been five years since our last Mother’s Day together. I’d like to share with you the video gift I gave her that year. It’s hard to know what to get an elderly, quadriplegic woman who is going blind from macular degeneration, but she seemed to enjoy what I threw together.

To learn just a little bit about how amazing my mother was, click here.

Re-watching the video below reminds me how fond I was of my old neighborhood, how hand-cycling used to make me feel so alive, and most of all, how much I miss my mother.

Click here for the YouTube version of this video.

Intrathecal Methotrexate – Update

On Friday I received my eighth intrathecal methotrexate treatment. The procedure was fairly routine. I had no post-lumbar puncture headache. In fact, I’ve gained so much confidence in the 25gauge needle that I have altered my post-treatment procedures. The oncologist requires that I lie flat on my back in his office for 30 minutes after the infusion. In his opinion, that makes the headache risk negligible. But, because I hate the headache so much, until Friday’s procedure I was also coming home and lying flat on my back until the next morning. Now, for the first time, I came home from the late afternoon procedure and stayed in my wheelchair until my normal bedtime.

So I’m settling into a routine with this procedure. It’s no big deal anymore. Every 8 to 10 weeks I get the infusion. For the remainder of that day I stay home and take it easy. My disease does not progress between infusions. I go back 8 to 10 weeks later and repeat the process.

Boring.

Of course, if intrathecal methotrexate stops working tomorrow I’ll be sad. This reprieve that I’ve been fortunate enough to enjoy for the last 14 months has been wonderful. But I appreciate, as with life itself, that my lack of disease progression is fragile and possibly fleeting, and must never be taken for granted.


Note: to read all of my intrathecal methotrexate posts, click here.

The Last Time I Was Drunk

In my 20s and 30s I was a member in good standing of the work hard and play hard club. For example, I recall a certain BYOB dance at a Knights of Columbus Hall in northern Maine. Kim was in charge of organizing our alcohol supply that night. When I grabbed my first beer at the dance I conducted a quick count and found that there were only 17 Michelob Lights in our cooler. I was incredulous. “Hopefully someone else brought extra beer,” I mumbled.

Due to my MS, today I no longer have the urge to consume much alcohol. I’ve become a two-drink kind of guy. If I go beyond that I become even more tired and weak than usual, and that is no fun. I can’t remember the last time I really tied one on. Wait – yes I can.

Our good friends Marco and Jean, who were regular weekend drinking buddies of ours back in the day, came to visit us in Portland one Saturday night about six years ago. At that point I was a scooter user. I could still get around a little bit with forearm crutches, but preferred to use the scooter when I had to travel more than 50 feet or so.

We started the evening at a sports bar called Rivalries. April is the only time of the year when the Red Sox, Bruins, and Celtics each play regular-season games. As luck would have it they were all on TV that night. Because Rivalries has an abundance of screens, we watched all three games from our table, plus a Yankees game too.

It was a night when everyone felt nostalgic, and we wanted to drink until we got drunk – except Kim, who was the designated driver. Marco and I conceived an elaborate drinking game where we would consume alcohol whenever the Red Sox scored, the Bruins scored, or the team playing against the Yankees scored. We couldn’t think of a way to incorporate the Celtics game into our drinking without suffering alcohol poisoning. It turned out to be a good night for the Boston teams, a bad night for the Yankees, and a memorable night for all of us.



We eventually tired of Rivalries, and Rivalries tired of us I’m sure. Our next stop was an Irish pub called Ri Ra, where the Red Sox were still being broadcast on one of their TVs. We continued our drinking game until we could drink no more. It had been a while since I had consumed so much alcohol, and things got away from me. We stepped out of Ri Ra and found ourselves out on the sidewalk of Commercial Street in Portland, Maine. This is the heart of the Old Port District where all the cool bars, fancy restaurants, and beautiful people can be found.

I steered my scooter down the wide, brick sidewalk, slightly ahead of Kim and our friends. I dodged imaginary obstacles, carving a path like a drunken slalom skier. I soon came upon a solitary, stoic man standing in the middle of the sidewalk ahead of me. I was inspired to cheer him up by demonstrating just how merry I and my band of followers were.

I throttled the scooter up to maximum speed and locked in on this unsuspecting pedestrian. My plan was to run circles around him until he smiled, and then continue down the sidewalk, perhaps seeking out another forlorn soul to sprinkle with my magical happy dust. About halfway through my loop-the-loop around this man, however, the laws of physics asserted themselves.

According to Wikipedia, centrifugal force is “the apparent outward force that draws a rotating body away from the center of rotation.” Well, away I went. I spilled my 3-wheeled scooter on its side. Fortunately, my fall was broken by the hard brick sidewalk. And because I was inebriated, I felt no pain. Instead, I considered my predicament to be about the funniest thing I had ever experienced. I began laughing with such intensity that I was gasping for breath.

Mine was only one perspective on these events. The innocent, unsuspecting soul who I targeted had another perspective. What he saw was a drunk, handicapped man, who had tipped over his scooter onto the pavement and injured himself so severely that he was having difficulty breathing. Was he dying?

Luckily, my posse caught up quickly and assessed the situation for what it was. They attempted to put the pedestrian at ease, but he had not signed up for this. Although he soon came to understand what was happening, he didn’t exactly see the humor. He was too traumatized.

When a larger than average, disabled man like me falls down drunk, it’s not easy to raise him. But my team of three people plus the pedestrian, with scant cooperation from me, was eventually able to scoop me up and pour me back onto my scooter. I had only a few minor scratches and bumps to show for it. I should have been embarrassed beyond consolation, but I wasn’t (and oddly, I still am not).

Kim didn’t take me directly home, but at least she cut me off from drinking for the rest of the night. They worked some food into me, and I said some funny but not creepy things to a waitress. I never fell off my scooter again that night, or ever.

This story is almost too pathetic to tell, yet I do. I find that sharing a self-depreciating anecdote on occasion helps maintain my humility. But do I regret that this fiasco was never made into a viral YouTube video? Hell no! Luckily, six years ago most cell phones didn’t have video capability.

I think that night was the last time I was really drunk, or ever will be again. MS has made me a more responsible drinker. Yet, although I find intoxicated behavior to be boorish and immature, it feels like a loss to no longer have the option to be boorish and immature.