(For those who receive this via email, this post contains a video, which can be viewed on the Wheelchair Kamikaze website – click here)
Just a few things to wrap up it up as we bid adieu to 2016, a year that has seen much tumult and turmoil for so many. My Spidey senses are telling me that 2017 may make 2016 look like a powder puff, but then again, three decades ago my Spidey senses told me that I would be the next Mick Jagger, so what the hell do they know? Stupid Spidey senses.
On a much more upbeat note, on Tuesday, December 27, 2016, Wheelchair Kamikaze received its 2.5 millionth page view, according to statistics provided by Google. All I can say to that little factoid is – mind blown. When I first started the blog I never expected more than a couple of dozen people to look at the thing, and even though I strongly suspect that at least 2.45 million of those page views are directly attributable to my mother, I’m still gobsmacked.
Wheelchair Kamikaze hit 1 million page views back in January 2014, about 5 years after I started the blog. Now, we’ve added another 1.5 million page views in only 3 years. Again – mind blown. All I can say is thank you thank you thank you thank you thank you thank you thank you thank you thank you thank you 2.5 million times to everybody who has ever laid eyes on these pages. Though my stupid Spidey senses never saw the unfortunate circumstances that led to Wheelchair Kamikaze coming down the pike, I am eternally grateful to everyone who has animated these pages with their comments, input, and presence.
We are all in this together, folks, and the only way out is through. You’ve all helped me stumble my way through the body and mind twisting experience of multiple sclerosis, and if I’ve been able to help some of you shoulder the burden even just a little bit then at least there has been some method to the madness. Okay, all together now – MS SUCKS!
For those who might want to read a bit more about yours truly and the back story of the blog, Healthline.com has published a very nice article about WK in conjunction with the blog taking 2nd place in the website’s Best Health Blog contest (click here). I’d like to profusely thank the writer who penned the article, Elea Carey. She somehow managed to wrangle the veritable deluge of self-indulgent verbosity I sent her way in response to some simple interview questions into a succinct and elegant piece of writing. Maybe I should hire her as the full-time editor of this blog. Lord knows I need one. Stop me before I compound sentence again.
Okay, enough about me, I’ll end this last blog post of the year with an actual MS related item. The much anticipated FDA review of Ocrelizumab, the first drug that has a chance to be approved for the treatment of PPMS (along with an almost guaranteed approval for RRMS), has been delayed. Although the drug was initially slated for FDA review on December 28, that date has now been pushed back to March 28, 2017, due to “manufacturing issues” (click here). I’ve previously written fairly extensively on Ocrelizumab and its late stage trials (click here), and I’ll certainly have more to contribute in the coming weeks.
Although the medical press is practically hyperventilating about the first drug that stands a very good chance at being approved for use in people with PPMS, there are some valid reasons for concern regarding this product. I’m hoping to interview a representative from Genentech, the manufacturer of Ocrelizumab, which, if it happens, should be pretty interesting. I’m also working on getting some interviews with other prominent figures in the MS world, so stay tuned…
All righty then, here’s to a happy new year to all, and may 2017 bring each of us much more good than bad. I’ll leave you with the following tune from a band I’ve loved ever since I first saw them as a high school sophomore in the late 1970s. To hell with my tingling Spidey senses, how about some unabashed optimism to ring in a brand-new year…
Ho ho ho, Merry Christmas, Happy Hanukkah, Good Festivus, and Happy Kwanzaa. And for anybody not covered by the previous salutations, I wish you a joyous winter solstice.
Okay, folks, the votes are in for our holiday donation contest, and it looks like the Tisch MS Research Center of New York has won in a landslide victory. The Tisch Center garnered 63% of the votes in our poll to determine which MS nonprofit should get the $500 donation derived from the prize money Wheelchair Kamikaze won in Healthline.com's "Best Health Blogs" contest.
Ultimately, over 210 people voted in our contest, with about 130 of them voting for the Tisch Center, so a resounding victory all around. This takes nothing away from the other nonprofits I offered up for votes: The Accelerated Cure Project, The Buffalo Neuroimaging Analysis Center, and The Multiple Sclerosis Association of America. All of these organizations are doing great things for the MS community and are certainly deserving of your own holiday gifts if you are so inclined. You can read more about all of them by (clicking here).
Oddly, the blog post soliciting votes for these groups was viewed almost 1200 times in the past week but only slightly more than 200 people voted in the poll. Not sure why somebody would read the post and not vote, but c'est la vie. Maybe it had something to do with Russian hacking or some other nefarious goings-on. Sad.
I will be making the donation to the to the Tisch Center as soon as I receive payment from Healthline.com, which is on its way. This past week I visited with Dr. Sadiq, the lead researcher of the Tisch MS Research Center, and he was extremely excited about the prospects for The Center's upcoming Phase 2 regenerative stem cell trial for MS patients, the first such trial to receive FDA approval. In preparation for the upcoming trial, The Center is about to start construction of the world's largest MS stem cell laboratory in the world, and is also about to publish the results of the first phase of the trial. The Phase 2 trial is currently scheduled to start in June, 2017. In addition to stem cell research, The Tisch Center is also delving into many other aspects of the MS mystery, and Dr. Sadiq had some very encouraging things to say about the whole of the Tisch Center's research efforts. He feels that his researchers are closer than ever before to unraveling some of the core mysteries of Multiple Sclerosis.
Not sure if I'll get a chance to put a post up next week, so let me take this opportunity to wish everybody a happy and healthy 2017. Here's hoping that the new year brings only good things to each and every one of us!
Thanks for reading Wheelchair Kamikaze, and for breathing life into this blog. My appreciation for all who visit these pages is beyond words…
Here's some Christmas cheer from The Godfather of Soul…
Hey folks, thanks to your votes Wheelchair Kamikaze took 2nd place in Healthline.com’s “Best Health Blogs” contest! This is really a terrific honor, particularly because of the fierce competition – 382 other blogs were nominated to participate in the contest. Big congratulations to the two 1st place winners who apparently tied in the voting, “Lizzie’s Lungs” (click here) and “ALS and Wellness” (click here), as well as 3rd place winner “Early Onset Alzheimer’s” (click here). And of course, a huge thank you to Healthline.com (click here) for running the contest. Although Wheelchair Kamikaze has been honored as among the top MS blogs in the past, I believe this is the first time it’s been recognized as one of the best health blogs in general. BTW, Healthline's graphic department came up with the above image. I'm not THAT much of an egomaniac…
Healthline has generously awarded Wheelchair Kamikaze $500 for its second-place finish. I’d like to donate this prize money to a worthy MS nonprofit, and I’d like Wheelchair Kamikaze readers to pick which organization should get the big bucks. We’ll do this via an online vote, much the way Healthline’s contest winners were chosen. I’ve taken the liberty to nominate four worthy organizations from which to choose. Here’s some brief background on the chosen organizations to help inform your vote. I’ve arranged the candidates in alphabetical order.
The Accelerated Cure Project (click here) – The ACP is the organization administering the iConquerMS project (click here), a patient-centric research project in which MS patients can take a personal stake in advancing the cause of MS research by completing a series of online questionnaires, suggesting research topics of importance to them, and providing their feedback on research studies. By “crowdsourcing” a massive amount of data supplied by MS patients themselves, iConquerMS is compiling an unprecedented database on all aspects of MS that is open to researchers worldwide. This huge pool of information should reveal trends and insights into and about the disease that otherwise would have been missed by looking at smaller pools of data. I strongly encourage all readers to visit the iConquerMS website to sign up and begin participating in this tremendously important project. Your information has power, and together we can conquer MS. (Full disclosure: I am a member of the iConquerMS engagement committee).
The Buffalo Neuroimaging Analysis Center (click here) – BNAC is a research organization devoted to shedding light on the mysteries of multiple sclerosis and other neurologic diseases through the use of innovative imaging techniques and advanced analytic tools. The group did some of the first rigorous scientific research on CCSVI when Dr. Zamboni’s vascular theory of MS first made headlines, producing findings that cast some doubt on the causative role of venous abnormalities in MS. Their research has expanded to include the role that vascular abnormalities might play in exacerbating a wide range of neurological disorders. Lead researcher Dr. Robert Zavidanov directs a team of medical researchers and scientists of a variety of disciplines, who, among many other projects, have probed the role that gray matter lesions and inflammation of the tissues that surround the central nervous system play in the MS disease process. BNAC has pioneered many revolutionary imaging techniques. Their work promises to change in a fundamental way our understanding of Multiple Sclerosis. (Full disclosure: I’m on the patient advisory board of BNAC).
The Multiple Sclerosis Association of America (click here) – The MSAA provides vital services and support to MS patients throughout the United States. Programs include a Helpline with trained specialists; award-winning educational videos and publications, including MSAA’s magazine, The Motivator; safety and mobility equipment distribution; cooling accessories for heat-sensitive individuals; educational programs held across the country; and Lending Library among other services. For MS patients in financial need, the Association provides assistive equipment and cooling garments free of charge, as well as financial assistance for those who cannot afford to get MRIs. The scope of services and information provided by the Multiple Sclerosis Association of America is truly astounding, and even includes a smart phone app that helps patients manage their MS. Their website is a terrific resource for information on all things MS. I encourage all Wheelchair Kamikaze readers to visit the MSAA website and poke around, it’s a veritable treasure trove of information and vital services.
The Tisch MS Research Center of New York (click here) – The Tisch Center is a worldwide leader in cutting-edge multiple sclerosis research, and is currently in preparations to begin the first FDA approved Phase 2 regenerative stem cell trial in MS patients ever conducted, expected to get started this June. The Center is building the largest stem cell research laboratory in the world, and its staff of world-class researchers has developed proprietary methodologies that transform raw mesenchymal stem cells into cells specific to the central nervous system, which should prove to be much more capable of repairing the damage done by MS than the raw cells themselves. Under the guidance of Dr. Saud Sadiq, the Tisch center is involved in a wide variety of transformative MS research projects, from identifying new disease biomarkers to understanding the mechanisms behind disease progression. The Tisch MS Research Center is totally devoted to finding the cure for Multiple Sclerosis, which is of course the ultimate desire of every MS patient and all those who love them. (Full disclosure: Dr. Sadiq is my personal neurologist).
Please take a thorough look at all of the above candidates, and vote for whichever organization you would like to see receive the $500 awarded to Wheelchair Kamikaze by Healthline.com. The poll is located at the top of the left-hand column of this page. I’ll leave the poll open for 7 days, so the results can be determined just before Christmas. Of course, all of these organizations are great candidates for your own charitable giving, should you be so inclined. Ho Ho Ho…
Once again, thanks so much to everyone who voted for Wheelchair Kamikaze in the best health blog contest…
(A quick thank you to all who have voted for Wheelchair Kamikaze in Healthline.com's "Best Healthcare Blog" contest. Voting continues until December 12, (click here) to cast your vote…)
Note – this is an updated version of this post, which was originally published earlier today. This update includes further information on the shingles vaccine, added at the end of the essay, due to some concerns raised by readers over the safety of the vaccine when used in MS patients. Just wanted to ensure that these issues were addressed.
Well, it looks like the holidays have come early to my house, and rather than Santa bringing me that 1956 Porsche I've always wanted, I instead got the shingles. Yay. Guess I was on St. Nick's "naughty" list…
About two weeks ago I started feeling vaguely unwell, suffering from the kind of symptoms one typically gets before the onset of the flu. Just generally achy, no appetite, and a tremendous amount of fatigue, even for an MS patient. A few days later I was assaulted by the worst headaches I've ever experienced, jolting bolts of excruciating pain that felt as if somebody was trying to impale my skull with a red-hot stiletto behind my right ear. The pain, which exploded from the bottom of my skull forward to the area above my right eyeball, came in waves about every minute or so, and was breathtakingly debilitating. I have a lot of experience with pain due to a degenerative bone condition called Avascular Necrosis, but the searing, twisted agony I was suddenly stricken with was beyond anything I'd ever felt or even imagined.
As I sat cradling my head in my hands, trying desperately to keep my skull from blowing apart, my wife quickly googled the symptoms I was experiencing. She came up with a condition called occipital neuralgia, which can develop in MS patients. The ailment involves inflammation or damage to one of the occipital nerves, which run from the base of the skull up through the scalp, and its symptoms seemed to precisely match what I was feeling. As this was all occurring on a Saturday night, there was little I could do but suffer through it. I was absolutely not going to go to a hospital emergency room, as I long ago resolved that before I would put myself through the existential, soul crushing misery of sitting in a New York City emergency room on a Saturday night I'd have to be suffering from something no less serious than a severed limb. Much better to lay moaning in bed waiting for my skull to combust.
The next morning I called my neurologist and told him what was going on, and he agreed that my symptoms sounded like occipital neuralgia. He phoned in a prescription for gabapentin, a drug also known as Neurontin, which is used treat nerve pain. The Neurontin did indeed reduce my pain level substantially, but also made me feel completely loopy and dumb as a box of nails. Still, not a bad trade-off, all things considered. Better stupid with a dull headache than smart with a skull trying to contain a thermonuclear blast.
Later that day I noticed a slight rash on my right forehead, an area in which I sometimes get a bit of psoriasis. For reasons that doctors really can't explain, many patients with nervous system diseases also get skin conditions like psoriasis or eczema. Ask a doctor about this strange correlation and they'll likely answer you with a string of polysyllabic mumbo-jumbo, because most physicians would sooner poke their own eyes out than utter the words "I don't know", but the truth is this connection has long been observed but is little understood. In any event, the skin on the right side of my forehead became more inflamed as the day went on, and started getting very tender as well. By that night I noticed little blisters appearing in the rash, and I started thinking "shingles".
The next day, Monday, I called my neuro's office and told them I suspected I had a case of shingles, and they told me to come right in. After a brief examination, the neurologist I saw confirmed that I probably had shingles, but advised me to see a dermatologist ASAP to nail down the diagnosis. I saw a dermatologist the following morning, and she concurred that I did indeed have shingles. I told her that I would rather have a spiral staircase, and she just stared at me blankly. I hate doctors with no sense of humor. She did say that the severe headaches I had experienced were typical for people developing shingles on their forehead and scalp, so that at least explained the pain I was feeling.
Shingles is a condition caused by the varicella zoster virus, also known as the herpes zoster virus. This is the virus that causes chickenpox, which was very common among children of my generation, back before most kids were given the chickenpox vaccine. I had chickenpox when I was six years old. The varicella zoster virus is a human herpes virus (click here), a family of viruses that also includes Epstein-Barr virus and the viruses that cause oral and genital herpes. In total, there are eight known human herpes viruses, which all share a common trait: once a person is infected with them, they are infected for life.
In the case of the varicella zoster virus, after causing chickenpox the virus goes into deep hibernation, taking refuge in the root cells of nerves. Later in life, usually when a person is older than 50, the virus can suddenly wake up and migrate down the path of the nerve to the skin, where it causes the painful rash that is the hallmark of shingles. There is now a shingles vaccine that can greatly decrease the chance of a person infected with herpes zoster to develop shingles, but I never asked for the shot. I'd seen countless commercials for the vaccine, and had thought to myself, "self, you should probably get that vaccine", but as I am generally nauseated by prescription drug advertising I refused to be swayed by the pharmaceutical companies' slick efforts to hawk their product. Stupid me.
While I did know that shingles involve a painful rash, I didn't know that the condition also commonly makes patients feel like absolute crap for weeks on end. Those initial flulike symptoms I was experiencing in the days before I developed the searing headaches and then the rash have blossomed into full-fledged misery, leaving me feeling like I just tried to kiss the "A" train between stops. I still have a dull headache, my muscles hurt, I feel feverish (even though I have no fever), and I'm so fatigued that I could easily sleep 20 hours a day. I'll be on antivirals for the next 30 days, which supposedly will shorten the duration of these symptoms. The blistering rash on my forehead is starting to crust over (yum), which is the first sign of healing. And, of course, as with any bug that strikes an MS patient, all of this has only made my neurologic symptoms much worse. My compromised extremities are less functional than ever, a frightening preview of what my continuing progression has in store.
I've been told to avoid contact with people until at least the end of this week, since there is a chance I could pass the virus on to folks who either never had chickenpox or were never vaccinated against them. The weird thing is that if I did pass the virus on to someone they would develop chickenpox, not shingles, since the first stage of varicella zoster infection is always chickenpox, no matter when you contract it. Avoiding people shouldn't be much for problem, as I can barely make it from my bedroom to the living room in my wheelchair. And who wants to see people anyway, when you've got a disgusting crusty rash on your forehead. Children would run screaming…
Please, take my advice – if you had chickenpox as a child, go get the shingles vaccine. I wouldn't wish what I'm currently going through on a dog. Actually, I wouldn't wish anything bad on a dog. I like dogs. Dogs are better people than most people.
Addendum: numerous readers have sent notes advising me that because the shingles vaccine contains live virus they've been told it's a no-no for MS patients. Others, though, have reported getting the vaccine with no problems.
Here's more info on the shingles vaccine and MS, from the National Multiple Sclerosis Society Website:
"Zostavax is a live-virus vaccine to prevent shingles. MS neurologists do not recommend live-virus vaccines for people with MS because these vaccines can lead to an increase in disease activity. However, Zostavax is an exception because most people have had chicken pox earlier in their lives and therefore already have the virus in their bodies. Each person needs to discuss the potential benefits and risks of this vaccine with her or his healthcare provider."
For further info, a very comprehensive article about the shingles vaccine and its use in MS patients can be found at the Multiple Sclerosis Association of America's website (click here).
Bottom line, there seems to be some conflicting information out there regarding the safety of MS patients getting the shingles vaccine. This appears to be due to the complex nature of Multiple Sclerosis and the drugs used to treat it. Each patient is different, and no one-size-fits-all approach will cover all bases. Given my horrible experience with shingles, I'd say it's definitely worth a conversation with your neurologist to discuss whether or not you're a candidate for the shot.
(Warning, shameless self promotion ahead: Wheelchair Kamikaze has been nominated for Healthline.com's "Best Healthcare Blog" contest. If you feel WK deserves such an honor, please cast your vote on the contest webpage (click here). Just scroll down at the contest webpage until you see the blog name, Wheelchair Kamikaze is currently in fourth place).
I'm proud to announce that Wheelchair Kamikaze has been nominated for "Best Healthcare Blog" in Healthline.com's annual best blog awards contest (click here). The winner of the contest will be decided by the votes of none other than the readers of the nominated blogs.
In fact, the nominations also came from blog readers, though I have no idea who nominated Wheelchair Kamikaze. I was completely unaware that the nomination process had begun, so I swear it wasn't me who proffered the nomination. But some very nice person or persons were kind enough to throw Wheelchair Kamikaze's name into the hat. Thanks, whoever you are. I had my suspicions as to who might have been the culprit, but my mom swears it wasn't her. Still, I have my doubts. When I was 26 years old she submitted a poem I had written in the third grade about how wonderful she was to the local Fort Lauderdale newspaper, which printed it – along with a hideous picture of me at eight years old, complete with coke bottle glasses and hair that looked like it was styled in a blender – on Mother's Day. This was just a few months after I had moved to the area and was just beginning to form a circle of friends. The day it was published was the day I learned how to spell "mortified".
Anyway, Healthline's Best Blog contest is decided by votes, so I'm asking all who appreciate these pages to cast a vote for Wheelchair Kamikaze (click here). As a matter of fact, you can cast more than one vote, since the rules allow for each person to vote daily. So, as they say in Chicago, vote early and vote often.
The voting actually started on November 21, so I'm a little late to the game because I've been engaged in hand-to-hand combat with some new and particularly unpleasant MS related crap. I'm like the butcher who backed into his meatgrinder and got a little behind in his work. Okay, just for dusting off that moldy oldie – which had them rolling in the aisles 60 years ago on the Borscht Belt (click here) – I think I deserve a vote or ten. And just my bringing up something as random and esoteric as the Borscht Belt should also be a vote-getter. Am I not just the most adorable thing… I'm not competitive or anything, but world domination has always been high on my bucket list. Today the blogosphere, tomorrow the world!
Healthline.com is offering a very generous $1000 prize to the winner of the contest. If I do win, half of the prize money will go to a worthy MS nonprofit, and it won't be the NMSS. Hey, here's an idea: I'll run a poll on the blog about which nonprofit should get the donation, on behalf of all of us. Won't that be fun? Voting ends on December 12, and, as I previously said, people can vote each and every day until the end of the voting period.
In all seriousness, writing Wheelchair Kamikaze has been one of the most rewarding experiences of my life. The fact that I've been able to help some of my fellow travelers on this rocky road that we've all been forced to follow leaves me humbled and grateful. The blog has allowed me to meet and interact with some of the bravest, most resilient, and remarkable people I've ever known, each fighting their own personal MS battle with immeasurable bravery and fortitude even in the face of the incomprehensible confusion and fear engendered by the disease. Wheelchair Kamikaze has given me a sense of purpose through my own struggle with the madness of Multiple Sclerosis, and I'm fairly certain I would not have made it this far without the support I have received from readers all over the world, many of whom have offered words of encouragement, kinship, and thanks that have more than once brought me to tears. I thank you all from the bottom of my heart.
If you care to cast a vote, please (click here). And once again, an immense thank you to each and every person who has helped make Wheelchair Kamikaze successful beyond my wildest dreams. I simply don't have the words to express the feelings I have for every patient, caregiver, and medical professional who has participated in WK these past seven and half years. What all of you have given me is simply priceless. And no contest win or lose will ever change that.
If you do vote, please use the search box on the contest page (click here) to find Wheelchair Kamikaze, as there are 383 blogs in the contest.
Thanks again for your support.
Addendum: Thanks to everyone who has already voted. Don't forget, you can vote every day until December 12.
I understand there are several hoops you have to go through to vote. First, you need to find my blog among the list of 383 blogs that were nominated. The easiest way to do this is through the search box on the contest webpage, and just search for "wheelchair". This way you don't have to try to figure out how to spell Kamikaze, and the search engine will bring you right to my blog.
After you enter your email address and vote, you need to scroll up the page to find the little "capcha" box to prove you're not a robot. Then you will get a confirmation email on which you need to click a link to confirm your vote.
Geez, guess they must be super worried about voter fraud or something. It's easier to vote for president…
I’m fully aware that the concepts of “fair” and “unfair” are constructs of the human mind. Politely stated, stuff happens. We then process that stuff and sort it into any number of mental files, “fair” and “unfair” being but two of the many choices in the filing cabinets we all carry around in our heads. Yeah, it seems unfair that I got slammed with the MS stick, but so did 400,000 other people in the USA. It’s also unfair that I wasn’t born into British royalty, but, given my proclivity for drunken shenanigans, the royal family might think it unfair if I was. Then again, I’d probably fit right in…
That said, I do think it is unfair that people socked with chronic illness are forced to not only deal with the ramifications of their diagnosis but also with a medical infrastructure that often seems geared towards making being sick as difficult as possible. It’s as if having a terrible illness isn’t quite enough; most patients soon find that on top of their condition come layers of impediments that seem designed to make being infirm an exercise in frustration, aside and apart from the effects of the disease itself.
Primary among the contributors to the difficulties encountered by the chronically ill are insurance companies, pharmaceutical companies, and the doctors who treat the illnesses themselves, an interlocking triumvirate that oftentimes seems intent on destroying the peace of mind of those unhappily forced into its grip. Let’s look at each of these elements individually, and explore the many fangs of this three-headed beast.
First, we have the insurance companies, which are generally perceived as big, boring, faceless monoliths filled with human automatons making love to their spreadsheets and actuarial tables. The reality of the insurance industry is a bit different, though. Insurance companies are professional gamblers who look at the entire world as one big casino. By fastidiously crunching data accrued over centuries, insurance companies place bets tilted in their favor on almost every aspect of life, including life itself.
In the case of the health insurers, the primary wager placed is that the money paid to them by the mostly healthy people they insure will far outweigh the money the company needs to pay out when the bet goes wrong and their customers get sick. Like any gambler, insurance companies hate to lose. When their wagers go south, they’ll shamelessly employ any number of unsavory tactics in an attempt to minimize their losses.
For patients forced to deal with insurers who aren’t keen on making good their part of the wager, this means having to navigate intricate bureaucracies who play by rules largely of their own making, utilizing tactics designed to discourage and dismay those trying to get their fair due.
Primary among these strategies is simply to delay making payments in the hopes that the patient will grow so incredibly frustrated they’ll eventually throw up their hands and give up. Insurers do this by putting as many obstacles in the way of the patient as possible, in the form of a labyrinthine paths to payment filled with large amounts of paperwork, endless requests for additional information, and a wall of bureaucracy meant to intimidate and appear impenetrable. Is there any less savory prospect than having to get on the phone with an insurance company representative to try to resolve a claim that the insurance company has arbitrarily denied? I’d rather try to brush my teeth with a flaming stick.
In the nearly 15 years since my diagnosis, I’ve spent countless hours on the phone doing battle with insurance company demonoids intent on frustrating my every attempt at having them make good on their obligations. Requested paperwork, once delivered, is often mysteriously “lost in the system”, requiring it to be refiled all over again. Claims are passed from department to department in an apparently endless loop, with each department introducing a new set of rules and requirements. The phone reps themselves are not empowered enough to actually take any actions, meaning that most of what is said to them is simply wasted breath. Aargh!
The key to getting eventual satisfaction (not to mention the money owed to you) is to never give up, even if it feels like your brain is about to blow through the top of your skull. In the words of Winston Churchill, "Never surrender!" If the phone rep is unable to give you a satisfactory answer, demand to speak to their supervisor. If that supervisor is uncooperative, demand to speak to their supervisor. Eventually, if it seems that you have run out of people to talk to, threaten the nuclear option: tell them you are going to get your state insurance regulators involved. This will usually lead to a miraculous resolution of your case. Unless of course you live in a state with lax insurance regulations, in which case you might try making hyena noises into the phone.
Of course, one of the reasons the insurance companies are so loathe to make payments is the outrageous costs of medical procedures and pharmaceutical products. This brings us to the second member of our triumvirate of torture, the pharmaceutical companies. Contrary to popular belief, the pharmaceutical companies themselves are not inherently evil, they just smell that way. The first thing to keep in mind when thinking about the pharmaceutical industry is that pharmaceutical companies are not in business to produce cures. This may be difficult to grasp at first, but truer words were never spoken. Except maybe “never eat enchiladas after midnight”. The indigestion will kill you, and you've got enough problems.
All of the major pharmaceutical companies are public companies, meaning that their stock is traded on the public stock exchanges. As officers in public companies, pharmaceutical executives are mandated by law to be beholden to their shareholders, not to the patients taking their drugs. The importance of this point cannot be overemphasized. Given this reality, a company making billions of dollars on a drug designed to treat a disease could potentially run afoul of their stockholders (and the law) if they came up with a drug that cured the goose that lays perpetual golden eggs. This is a classic conflict of interest.
The tremendous profitability of "successful" pharmaceutical products has led Big Pharma to engage in many morally questionable activities. Believe it or not, more money is spent on marketing pharmaceuticals than is devoted towards the research and development of newer and presumably better drugs. Since the pharmaceutical companies themselves fund most late stage medical research – they are the only entities with enough money to do so – negative research results are often suppressed and never see the light of day. This means that the research our doctors rely on when making treatment decisions is inevitably skewed towards the positive. Supposedly independent research has often been found to have actually been written by ghostwriters in the employ of Big Pharma. The pharmaceutical lobby is one of the most powerful in Washington, practically ensuring that most of these ills never get properly addressed by our lawmakers.
Having said all of that, the most insidious and pernicious way the drug companies impact patients themselves is their ongoing practice of bribing doctors to prescribe their drugs. Naturally, these bribes are dressed up in all manner of tuxedos and ball gowns, taking the form of “honoraria” or “consulting fees”. Doctors are paid copious sums to “educate” their fellow physicians, most often over expensive dinners at fine restaurants. Physicians are invited to “educational symposiums” which take place at luxurious resorts where most of the education seems to come in the form of 18 holes on a golf course. In one of their latest ploys, pharmaceutical companies ask doctors to fill out surveys which earn the physicians points that can be redeemed for all sorts of luxury goods (click here).
How and why are these practices not illegal? Got me. Before MS forced me to retire, I worked in the music industry for one of the largest multinational entertainment companies in the world. If our company was caught paying radio stations to play the records we produced, people would go to jail. Now, what is more harmful to society, music companies paying off DJs, or drug companies paying off physicians?
Thankfully, patients now have a resource by which they can find out just how much money their doctors are taking from pharmaceutical companies. The website “Dollars for Docs” makes it easy for patients to look up their doctors and find out exactly how much pharmaceutical company money their doctors pocketed from August 2013 to December 2014 (click here). I’m happy to say that my neurologist doesn’t even allow pharmaceutical company representatives into his clinic, and the fact that he doesn’t appear on the Dollars for Docs database confirms this. If your doctor does show up on the database and has pocketed tens of thousands of dollars of pharmaceutical company largess, it’s certainly within your rights to question them as to how these payments influence their treatment decisions.
Which leads us to the final element in our trilogy of torment, which, tragically, is often our physicians themselves. This is by far the most heartbreaking component of the obstacle path patients with chronic illness must navigate, as our doctors should be sources of comfort and care, not necessary evils. I consider myself extremely fortunate to have as my neurologist a man I not only respect but for whom I also have a very real affection. And I’ve every reason to think that the feelings are mutual. Sadly, in my contacts with literally hundreds of MS patients since I started this blog, I’ve found that the clear majority have a negative relationship with their neurologists, with feelings ranging from mild apprehension to utter disdain.
As patients saddled with chronic illnesses, we are forced to enter long-term relationships with the doctors we choose to treat our conditions. As with any long-term relationship, it’s important to choose a partner who will be a positive in your life. And yes, I did say partner. The patient-doctor relationship should be a partnership, not a dictatorship. The patient should be respected and educated by their doctor, not talked down to or given orders without any explanation.
Oversized egos seem to be abundant in those who don white coats and endeavor to be healers, and I suppose a certain amount of ego is only to be expected given the often daunting professional path taken by those who choose to treat intractable illnesses. But, contrary to what many of them seem to believe, doctors are not gods, and the fact is, just as in any profession, there are those who are great at their jobs and others, not so much. There’s an old joke that asks “What do you call someone who graduates from medical school with a C- average?”. The answer: “A doctor”.
For patients with serious illnesses, it’s easy to feel at the mercy of the person we desperately hope will relieve the burden of our disease. Sadly, I’ve heard far too many stories of supposed MS experts giving patients horrible advice, putting them on treatments clearly wrong for that particular patient, or leaving the patient themselves to make serious treatment decisions while providing little or no pertinent information upon which to base those decisions.
My first MS neurologist, the man who gave me my diagnosis, was I am sure a brilliant human being, highly respected in his field. Unfortunately, he had the bedside manner of The Great Wall of China, without the scenic views. I was shocked when at the end of our first appointment he handed me four videotapes – each promoting a different MS drug – and told me to go home, watch them, and come back with a decision as to which drug I wanted to try. I was so confused I could barely get a word out. At that point I had barely wrapped my mind around the fact I was seriously ill and knew absolutely zilch about Multiple Sclerosis. I was overwhelmed, frightened, and certainly in no position to pick a drug based on some slickly produced video presentations. Needless to say, this neurologist did not stay my neurologist for long.
I do realize that in many parts of the country and the world MS specialists are hard to come by, so many patients have a limited choice of doctors. Even in these situations, though, it’s important to make sure that your questions get answered, that your fears and concerns are addressed, and that you are seen as a human being, not merely a body harboring a dread disease. Always remember this: your doctor works for you, not you for them. Just like anybody else you pay for service, your doctor is under your employ, not the other way around. As your doctor’s employer, you are free to fire them if you are not satisfied with the job they are doing.
Now, that doesn’t give you the right to be disrespectful, impolite, or tyrannical, and even under the care of a top-notch physician dealing with MS can be a messy affair, both emotionally and physically. You owe it to yourself, though, to become an active participant in your treatment plan, and that means partnering with a doctor you can trust and respect, and whose motivations aren’t subject to suspicions of self-interest. If your current doctor fails to meet those criteria, I suggest you start looking for a new one.
In short, being sick sucks. Not only do we have to deal with the ravages of disease itself, but also with all sorts of ancillary BS that makes life for those unfortunate enough to be stricken with chronic illness exponentially harder. Between the insurance companies, pharmaceutical companies, and some physicians, the impediments faced by those with serious illnesses can be almost impossible to confront. And yet confront them we do, with a quiet heroism that goes almost completely unacknowledged.
The myriad obstacles thrown at people with serious illness are by and large beyond the comprehension of the healthy, as one cannot fully understand just how dysfunctional the modern medical establishment is until one is thrust into the belly of the beast.. We who are members of a club that none of us wanted to join share insights and experiences that are ours uniquely. As WC Fields famously said, all in all I’d rather be in Philadelphia…
For those readers who might enjoy an MS essay of a more philosophical bent, my friend Mitch, who maintains the MS blog Enjoying The Ride, wrote a wonderful piece on acceptance in the face of ongoing disease progression (click here).
RIP Leonard Cohen, who died last week at age 82. One of my favorite songwriters, I think he’s pretty much the man I always wanted to be. Though this isn't one of my most cherished of his compositions, this song is quite apropos for the times in which we now find ourselves…
Given my tendencies towards intense introspection, I find it hard not to dwell on the “why’s” of my disease. Primary among these why’s is “why me?”, a question infused with self-pity that I know is best left unprovoked. I could quite easily drive myself half mad trying to figure all of the angles involved in this ultimately unanswerable query. If I’d made some different decisions in the past, might some alternate life path have avoided the Multiple Sclerosis landmine? Or would all roads eventually lead to Rome?
When I have allowed myself to stray down this tangled trail, a nasty battle always breaks out between my Buddhist and existential leanings, my inner Siddhartha calmly stating that there is no such thing as coincidence while my inner Jean-Paul Sartre screams back that life is nothing but an exercise in randomness. Nothing like a philosophical brouhaha roiling around inside the noggin to ruin what might have otherwise been a decent day. In the end, these thought kerfuffles inevitably lead me to counter the “why me?” conundrum with its other half, “why not me?”. This seems to temporarily satisfy both Siddhartha and Sartre, forcing them each to retreat back to their own little corners of my mind, where the Buddha sits in quiet meditation and Sartre drinks and smokes his brains out.
I have of late been giving more thought to the “how’s” of my illness, as in “how the frack did I get so sick!?!?”. Whereas the “why” question deals more with the metaphysics of the situation, the “how” is focused more on the nuts and bolts of the disease mechanism and the circumstances that led to my getting ground-up in its gears. At first glance the “how” might seem as insoluble a question as the “why”, but by sizing up what we know about the disease and matching it with the circumstances of my own life I think I’ve come up with a reasonably plausible explanation for how I got from point A to point B (and the B stands for “Blechh”).
It’s long been suspected that Multiple Sclerosis and other so-called autoimmune diseases have strong genetic components. As scientists have begun to unravel the human genome, more and more genes have been discovered that seem to play a role in the Multiple Sclerosis disease process (click here and here). While many patients might not be able to isolate their own genetic susceptibility without a complete mapping of their DNA, in my case the genetic connection is actually quite clear.
My mom developed gestational diabetes when she was pregnant with me, and unlike the vast majority of such cases, her illness did not resolve after I was born. Stranger still, her malady turned out to be type I diabetes, otherwise known as juvenile diabetes, by far the most serious form of the disease. Type I diabetes is thought to be caused by an autoimmune attack on the pancreas, leaving it unable to produce insulin. A shake of my mom’s family tree revealed that her grandfather and uncle also had type I diabetes, indicating that there is certainly a genetic trait for the disease being passed down from generation to generation. Research has shown that the children of diabetics have a 50% greater chance than the general population of developing some sort of autoimmune disease, and here I am with not only MS but also Hashimoto’s thyroiditis, an autoimmune disease that destroys the thyroid gland. It is also suspected that I’ve had an autoimmune attack on my pituitary gland, and for a while the doctors thought I had discoid lupus, an autoimmune disease that attacks the skin.
Of course, simply having the genetic predisposition to develop a disease doesn’t on its own guarantee that a person will get sick. Given my family history, it’s likely that many of my relatives share these same funky genes, and none of them, to my knowledge, have developed diabetes, Multiple Sclerosis, or any of the other usual suspects (lupus, rheumatoid arthritis, Crohn’s disease, etc.). Somewhere along the line something needs to trigger the genetic susceptibility for disease to take hold, in effect turning the “sick genes” on. In the case of MS, scientists have long focused on the Epstein-Barr virus (EBV), a member of the herpes virus family, as a likely disease trigger.
Epstein-Barr virus is the nasty bug responsible for mononucleosis, although most people infected with EBV never do develop Mono. Instead, the initial infection can manifest as a severe cold or flu, and a person can often be infected without having any symptoms at all. Once infected with EBV, the virus stays within a patient’s body for the rest of their lives. Infection with Epstein-Barr virus is so common that it’s estimated about 90% of the adult population harbors the virus. Astoundingly, though, it’s been found that 100% of MS patients are infected with EBV. That’s right, 100%. The correlation is so high that some researchers have stated that “people who are not infected with Epstein-Barr virus do not get MS” (click here).
Sure enough, blood tests have revealed that I am indeed infected with EBV. Of course, since the vast majority of adults are also infected with Epstein-Barr virus, the virus alone can’t be the cause of Multiple Sclerosis. In conjunction with a genetic susceptibility, though, the virus may be the thing that tips the scales between health and illness.
It’s interesting to note that in its dormant state, Epstein-Barr virus takes up residence within the immune system’s B cells. Just so happens that some of the MS disease modifying drugs destroy a patient’s B cells, thereby ridding the body of much of its EBV load as well. The interferon drugs (Rebif, Avonex, Betaseron, Plegridy) also happen to be very strong antivirals. Could it be that these drugs work, at least in part, not because of their immunosuppressive or immunomodulating properties, as is commonly believed, but because they are attacking EBV in the bodies of MS patients? Not a mainstream idea to be sure, but something I think worth considering.
Epstein-Barr virus isn’t the only infectious agent that has been linked to MS. The bacteria responsible for many sinus infections have been implicated in the disease as well (click here and here). I’ve suffered from sinus infections most of my life and had endoscopic sinus surgery in 2006 to try to eradicate the problem. Unfortunately, the surgery only helped temporarily, as my sinus problems reemerged soon afterwards. So I’m two for two when it comes to possible infectious triggers for Multiple Sclerosis.
Actually, make that three for three. Exposure to toxic molds and funguses have also been linked to neurologic and demyelinating diseases (click here), and back in the 1990s, when I was living in South Florida, I spent two years working in a building that was found to be riddled with toxic molds and bacteria. At the time I was employed by a startup company, and after a few months working in their very crowded offices the company moved into a larger building that had been empty for quite some time. The facility was in pretty bad shape, with wires dangling out of the decrepit ceiling panels and a musty smell hanging in the air. Simply walking into the place felt unhealthy.
After spending about a year and a half working within those walls it was revealed that upper management had been sitting on an environmental report which stated that the building was riddled with a smorgasbord of toxic microorganisms. The sons of bitches in the executive offices had kept the report hidden until one of their administrative assistants copied it and left it on the desks of several employees. Soon after, men in hazmat suits came and sectioned off parts of the building as they decontaminated the place section by section. In retrospect, my first weird symptoms started cropping up while I worked in that building, and last year when I was tested for exposure to toxic molds the results came back positive. Wonderful.
Stress is another factor that has been linked to MS and similar diseases. Many MS patients report their first symptoms after periods of acute stress, and it’s been demonstrated that stress can bring on relapses in those patients suffering from Relapsing Remitting Multiple Sclerosis (click here). Though I’d always been neurotic and prone to worry, my years in South Florida were especially filled with stress, both of the acute type brought on by upsetting life events, and long-term simmering stress engendered by living in a place where I always felt like a stranger in a strange land.
My periods of acute stress were almost always initiated by the breakup of romantic relationships, which I inevitably took much harder than was even remotely reasonable. Losing a long-term girlfriend more often than not sent me into a period of prolonged psychological agony, during which I’d lose weight, sleep, and sense of self for months and months at a time. Yes, I know it’s hard to believe that any woman would leave a fella as oozing with charm as me, but lo and behold, there were a few who unceremoniously gave me the gate. And when they did, I imploded. Seems I had an incredible knack for zeroing in on precisely the women who would be most toxic to me and then fall for them, hard. I believe the accepted psychological term for a person who habitually engages in such behavior is “jackass”.
Soon after one breakup in 1997 I suffered from incredibly severe headaches for about three weeks, super intense searing headaches that emanated from the base of my skull and left me damn near completely debilitated. Now my MRI images reveal my one big juicy MS lesion at the very top of my spine right beneath my brainstem, precisely at the spot from which those headaches seemed to radiate. Could it be that those headaches of old were somehow involved in the formation of the lesion that is at the root of my current neurological mess?
The latter five or six years of my stay in South Florida found me enmeshed in a kind of simmering, low-level stress brought on by trying to be someone I wasn’t. I spent that time working in extremely corporate environments, shirt and tie type places that I found to be soul stifling. Though I had creative jobs within those organizations, the stress of trying to conform with corporate culture took its toll. I had once sworn I would never join the 9-to-5 workaday world, but there I was, sending myself off to prison each and every day.
Though I made several very close friends in Florida and was never wanting for a social life, I always felt somewhat alien there, my aesthetics and values simply at odds with the place and most of its inhabitants. Still, for reasons I can’t fully explain, I remained living in a place I couldn’t stand while working at jobs I hated until one final romantic breakup mercifully sent me packing back to New York, where I rediscovered the me that I’d almost forgotten existed. And then, just a few years later, the beast that had been showing glimpses of itself for years finally reared its ugly head, and I was diagnosed with MS.
There then is the “how” of my disease, as best as I can figure. Genetic predisposition? Check. Exposure to infectious triggers? Check. Periods of stress, both acute and long-term? Check. Now, if only there was some way to uncheck some of those boxes. Researchers are just starting to try to figure out how to address the genetic aspects of disease, and many biotech startups are attempting to develop gene therapies for a variety of illnesses. Scientists are working on vaccines for Epstein-Barr virus, but the work still seems to be in its early stages (click here). And though life will never be free of stress, individuals can learn techniques such as mindfulness and meditation that can help them make better life choices and reduce the impact of stress on their existence.
I wish I could say that figuring out how I got sick brings with it some sort of gratification. I suppose that on a purely intellectual level fitting the puzzle pieces together into a somewhat coherent picture is a teensy weensy bit satisfying. Then again, all of my conjecture may be completely wrong, my illness due more to the evil eye put on me by a Gypsy beggar I once crossed than to the elements identified by my keen analytical powers. Perhaps it was my destiny to wind up the Wheelchair Kamikaze, and no matter what choices I made, all roads would’ve converged at point B (as in B, for “Barf”). Okay, I’d better stop this thought train before Siddhartha and Sartre square off and pelt each other with rocks and garbage in the deepest recesses of my brain pan…
We must free ourselves of the hope that the seas will ever rest. We must learn to sail in high winds. – Aristotle Onassis
Of late I’ve been navigating choppy waters, my physical problems becoming ever more pronounced and complicated, the progression of my disease along with its attendant disabilities charging ahead relentlessly. At this stage of the game I’m fully aware that there are no easy answers forthcoming. In addition to my ever-increasing crippling neurologic deficits, my highly dysfunctional endocrine system continues to defy explanation and remedy, and – as if these previous two beasties weren’t enough – a hideously painful degenerative bone disease called avascular necrosis has shattered both of my hips and shoulders, a condition which exponentially decreases my already gutted quality of life. The kicker is that the avascular necrosis is a rare side effect from the high doses of IV steroids I was given early on in my MS career in attempts to forestall the progression of the disease, and I was probably all the more susceptible to the condition due to my then largely misunderstood endocrine problems. This tangled web of maladies seems symbiotic. Each multiplies the problems caused by the others, forming a devilish trio that has me directly in its sites.
Still, even as the body flounders my spirit soldiers on, admittedly bowed but still unbroken. Though on an intellectual level I’ve long recognized the ruinous damage that can be wrought by progressive MS, I honestly never imagined or expected that I’d reach the level of decrepitude at which I now find myself. Given my extensive laundry list of failed and failing body parts, at this point there are moments when I realize how easy it would be to simply throw in the towel. Instead, I choose to continue the fight, and even in the midst of my ongoing crises of spirit and body, I can’t help but wonder, why? What is the nature of the spark within that steadfastly refuses to be doused?
When I was a little boy I had great fun rummaging through piles of old family photos with my grandmother, visual relics haphazardly collected in a variety of well-worn boxes stored up in her bedroom closet. It seemed there was a story attached to each image, and I delighted in seeing my adult relatives as their much younger selves in long ago moments forever frozen in time. I knew most of the people in the pictures, but there were of course photos of people I had never met; people who had died, old friends who had drifted away, or folks who had otherwise been lost to time.
Among the oldest photos in this treasure trove were yellowed, cracked images of my European ancestors who hadn’t migrated to the United States at the end of the 19th century. I remember staring at these pictures especially intently, and I vividly recall seeing one small boy with whom I bore a striking resemblance. Because of this resemblance I felt a strong bond with this mysterious person, so distant from me in time and place. As a young boy I couldn’t help but be mesmerized by this reflection of myself in a photo more than half a century old.
When I first saw these ancient photos of my ancestors I was quite young, maybe five years old, and when I asked what happened to the people in them my queries were always met with a strange silence. When I asked again just a few years later, though, I was finally told that those who had lived long enough to see the outbreak of World War II had all been murdered, victims of the Nazi Holocaust. Naturally, this news had a profound effect on me. Though I don’t think the message was ever explicitly communicated, I knew in my bones that part of these people still lived in me, their blood running through my veins. As I grew older I came to feel that my very existence somehow defied the horrors that had been visited upon them, and that my life represented a victory over those who had inflicted unthinkable evils on my long lost relatives.
I was brought up with virtually no religious training, and frankly don’t have much use for organized religion, but I do culturally identify quite strongly with my Jewish heritage. Early on I developed a keen interest in the Holocaust. As I learned more and more about the realities of camps like Auschwitz, Treblinka, and Sobibor, I often wondered how anybody could have survived the raging inferno of daily life in those malevolent places, the level of depravity inflicted upon those imprisoned within them beyond description by the words of any language. Some inmates survived years in those camps, month after month spent subjected to endless horror. What is it that resides within the human spirit that keeps alive the will to live, to make it through just one more day despite being trapped in a world in which wholesale torture and murder are rendered banal? The atrocities inflicted upon these people and to which they bore daily witness defy understanding in any rational sense, and yet the sheer determination to live stood strong.
When I first started my career in TV and video production I was living in South Florida, then home to more Holocaust survivors than any place other than Israel. In one of those odd coincidences that mark the path of life, one of my first assignments as a Producer at a local cable company was to help document the testimony of survivors by recording their stories on videotape. My role was to man the video control room of our studio, choosing between camera angles using a device called a switcher while on our soundstage a professional interviewer led each survivor through their narrative, parts of which many of the survivors had never before spoken a word.
Though I participated in at least a dozen of these interviews, the experience was always emotionally wracking. In each instance an elderly grandmother or grandfather would arrive at the facility, by all appearances just like every other senior citizen retired to Florida, save for the numbers invariably tattooed on the forearms. Each interview started off rather routinely, the survivors telling tales of everyday life with their families in small towns or big cities located all over Europe and Russia. Soon though their stories took a dark turn, and out of the mouths of these sweet old people poured forth depraved accounts of heartbreak and cruelty that left all who heard them at first aghast and then in tears.
The experiences recounted included first hand reports of babies ripped from the arms of their mothers and killed before their eyes, friends expiring in boxcars so packed that there was no room for them to fall, and parents calming toddlers even as they were led to the gas chambers. One elegant lady lost all semblance of composure as she told of being shot and dumped into a mass grave, only to survive and crawl out from under a tangle of corpses when night fell. Many told of the heroism of the Gentiles that tried to save them, beacons of light shining through the some of the darkest hours civilization has ever known.
When asked how and why they were able to endure their ordeals from one day to the next, even in the most desperate of times when thoughts of liberation and freedom seemed folly, practically every one of the survivors answered that their primary reason for clinging to life was the burning hope that at least one person survive to bear witness to what happened, so that the millions of dead would not have died in vain and that mankind would never forget and let it happen again. Thus, the sheer act of living became one of rebellion, a blow struck for humanity against a world gone mad.
Now, to be sure, I am not comparing my own predicament to that of an inmate of Auschwitz in 1944, except for perhaps one tiny commonality. In the face of a daunting odds the embers of hope stay lit, even if only in defiance of a state of affairs that on some days seems without resolve. Despite the ravages of my illness and the improbability of my finding anything approaching a cure, something within simply refuses to accept my predicament but must instead fight and keep searching for answers. I am acutely aware that even if my neurologic disease were to suddenly relent I’d still be left with an endocrine system so broken as to be disabling in its own right, and that even if my endocrine issues were then miraculously stabilized I’d need to have my hips and shoulders replaced before I could leave my wheelchair. I’m not a rainbows and unicorns type of guy, but I am an obstinate SOB, and I’m not going down without a brawl.
Since the day of my diagnosis I resolved to face my illness in all of its stark reality. I fully understand that the odds of my being cured are next to nil, but if the medical geniuses could at the very least get me back to where I was five or six years ago when I was regularly out and about terrorizing pedestrians on the streets of New York in my speeding wheelchair, I’d be ecstatic. Even this attenuated wish is likely a stretch, but when my mood turns dark I think of that long-ago child in the pictures from my grandmother’s closet and determine to try to honor those whose blood runs through my veins. I am but a speck on the arc of time, my tribulations worthy of not even a footnote in the history of human suffering. I find this awareness of my own insignificance oddly comforting, a reminder that no person transcends the unyielding torrent of time. I long ago resolved to never let hope eclipse reason, yet despite the twisted knot of crippling ailments that may stack the odds against me, the defiant spark within still burns. Hope and reason are not mutually exclusive; in fact, each balances the other, combining to form a force capable of holding steady even in the roughest of seas.
A note to my fellow MSers: please let me emphasize that my situation is fairly unique in its complexities, a web of rare conditions that seem to feed off of each other. Thirteen years after my initial diagnosis, my doctors are still not even sure that my neurologic disease is MS. As I’ve written before on these pages, my neurologist and I have agreed that in my case PPMS stands for The Peculiar Paralysis of Marc Stecker. Don’t let the details of my situation dishearten you about the prospects of your own. Given the ever accelerating pace of MS research and the advances being made in laboratories around the world, MS patients have now more than ever very tangible reasons for hope. Current treatments have demonstrated in trial after trial that they can positively impact the disease course for many if not most patients, and emerging and experimental therapies now being tested provide the tantalizing promise of completely halting the disease and even repairing damage already done. At long last progressive MS is finally taking its turn as the focus of MS research, it's many mysteries slowly becoming untangled. Of course, for patients suffering from MS answers cannot come fast enough. Although there’s no denying MS remains a terrible beast, there are now more reasons than ever to have faith that this beast can and will be tamed.
(Yes, I'm still here, but also still in hiatus mode. I know it's been a while, but I have finally started on a new essay, so this will likely be the last of my "blast from the past" reposts of musty old Wheelchair Kamikaze essays. This one was originally posted back in April, 2011, and received a very generous response from my readers at the time. I hope whoever has hung around throughout my prolonged vacation from the blog will find some value in this piece.)
Living with progressive Multiple Sclerosis has forced me to contort my mind, body, and spirit in an never-ending exercise in adaptation, as my mounting physical disabilities force me to make my way through an increasingly strange world designed by and for people with fully functional limbs. The manipulations needed to adjust for functional deficits involve not only the body, but the mind as well. As more and more of the outside world creeps beyond the reach of my diminishing physical abilities, the inner self must begin jettisoning vestigial notions of identity that simply no longer apply. Objects once immensely useful and sometimes cherished are stripped of their functional value, and with them parts of my identity are stripped away as well.
Our sense of self is inevitably influenced by the outer world and our place in it as we make our way through life and undergo the many changes our paths require, some of these changes chosen and others imposed. In our hyper consumerist society the link between material objects and self-identity begins at a very early age. I vividly remember the embarrassment of discovering, in the fourth grade, that I was wearing the "wrong" sneakers. Forty years ago the choice of children's athletic footwear was miniscule compared to the mind-boggling galaxy of brands and styles that exist today, but even so, wearing an inferior brand (in my neighborhood, they were called "skips") meant you were somehow an inferior person, worthy only of scorn and ridicule.
Even as a kid I instinctively realized how asinine this notion was, and yet the social pressures were such that it was impossible not to buy into this ridiculous narrative. Though my no-name sneakers were perfectly functional I was mortally embarrassed to be wearing them, as they weren't Pro-Keds, Converse, Adidas or – gasp – the holy of holies, the hallowed king of all 1970s boys footwear: majestic blue suede Pumas, called "Clydes" because they were endorsed by Walt "Clyde" Frazier, a New York Knick and all-time basketball great.
Clydes were so out of reach for most of the kids in my blue collar Queens neighborhood that when one of my classmates suddenly showed up wearing a pair, all the rest of us could do was stare, rendered speechless by wonderment and intense envy. Suddenly, this boy who had been strictly middle of the pack was now elevated to the top of the pecking order. We knew it, and, more importantly, he did too, and he fully embraced the part. He was cool, and I was not, sentenced to fourth grade social purgatory by my mortifying footwear.
To my eternal ecstasy, in the summer between the fourth and fifth grades, my dad surprised me with a pair of blue suede Clydes, and on the first day of the fifth grade, I was met with a gallery of faces wearing the same stunned expression I had worn the year before, the eyes of all of the boys in my class fixed unblinkingly on my feet, an astonished look of shock and awe frozen on their faces. Funny thing was I had grown so used to wearing the shoes over the summer that it took me a few seconds to realize just what had elicited such a reaction. When I finally made the connection, man did it feel good. I found my 10-year-old self almost magically transformed, my blue suede sneakers the elementary school equivalent of Cinderella's glass slipper.
As I grew into an adult, I found this same strange interplay between the inner self and outer perceptions repeated time and time again. In my 20s I was the bohemian rock 'n roll rebel, and my black leather jacket, tight blue jeans, and Spanish healed boots proved it, just like it did for all the other nonconformists I hung out with who all wore subtle variations of the same exact outfit. Of course, my self-identity wasn't rooted entirely in the clothes on my back, as it was that inner identity which led me to choose the way I presented myself to the world. The relationship between inner and outer self is symbiotic, each feeding off each other in a twisting and ever ongoing interplay. Still, I remember slipping into my first black leather jacket and the giddy sense of self satisfaction that it conferred. I just couldn't have been more impressed with myself.
As more years flew by, the interdependence of what I owned and who I was continued its complex dance. After all, the clothes we choose to wear, the furnishings with which we decorate our homes, the careers we pursue, the cars we drive, and even our mates all represent the identity we elect to reveal to the outer world. For some, that display is in close concordance with the inner person, but for others, it really is a show, a contrivance, some people consciously hiding their real selves behind a purposefully blinding array of baubles, bangles, and beads. It's important to learn how to recognize these folks, and avoid them because for the most part they are trouble. They may not actually mean harm – though some do – but the dissonance between their projected self and the person within inevitably causes inner conflict and stress which, like a contagion, can soon spread to everyone around them.
By the time of my MS diagnosis at age 39, the interplay between the inner me and the objects I selected to represent myself to the outside world were a finely woven fabric. Unless a person chooses to live a monastic lifestyle, this meshing between the inner and outer, given the super materialistic world we live in, is just about inevitable. Even the monk with his threadbare cloak and vows of poverty has chosen a lifestyle that is a statement to the outside world. After all, one can be threadbare, poverty-stricken, and pious without advertising it by taking an oath and donning sackcloth and sandals.
When I was diagnosed with progressive MS, I was many things; a DVD producer, the husband of a lovely woman, a driver of sports cars, a collector of antique watches, a socially active Manhattanite, a sharp if funky dresser (if I must say so myself), a devoted dog owner, and dozens of other labels and projections that influenced not only how others perceived me, but also how I perceived myself. Suddenly I had a new tag, Multiple Sclerosis patient, and one with an aggressive form of the disease at that. This new label would soon mushroom and overtake many of my other outward incarnations, as my diminishing physical abilities forced me to give up many self-defining activities and diversions, and rendered many of the objects I once held precious completely and utterly useless.
Like opening a Russian doll within a doll within a doll, the disease, as it whittled away at my physical abilities, forced me to psychologically peel back layer after layer of shifting self-identities. I found that this process is not without pain, as many of those once projected but now obsolete selves were founts of much pride. Some were badges of honor, others bandages covering old wounds. Stripped of outer distractions and contrivances, and in relatively short order forced to "retire" from the working world, I was left to ponder what was left of me in the absence of a lifetime of accumulated pacifiers, identifiers, and diversions. The process can be downright scary, as it leads one to consider one of the crucial questions of the inner universe: at my essence, who am I?
Just as a chemist works to break down complex compounds to discover the individual molecules from which they are made, chronic progressive illness puts a personality under mortar and pestle, grinding away the web of complexities that buffer the core of a person from themselves and from the world at large. As my illness has forced me to adopt a simpler life, it's also brought forth a simpler Marc, living an existence almost preadolescent in nature. Strangely, along with restoring a kind of innocence the experience has coalesced much of the wisdom I barely knew I had accumulated through the years, in many cases revealing insights that I hadn't consciously realized I possessed, many of which would've certainly come in handy when I was healthy. It has allowed me time for introspection, time much needed to digest all of the changes being wrought, time required to assimilate both the losses and the gains.
Despite the uncertainties concerning my physical condition, I've discovered an intellectual confidence, and the ability to be alone without being lonely. I often used to compulsively crave the companionship of others even though I frequently felt alone in a crowd, that crowd offering comfort and distraction. Gone is the desire for bright lights and constant action, replaced with the knowledge that the greatest blessing on earth is a quiet night at home with loved ones. Faced with serious illness, all abstraction is stripped from the concept of mortality, and I've come to value quality over quantity. My patience for trivialities, some of which used to consume me, quickly dwindled, and continues to do so.
I find that I value honesty and kindness more than ever, and that the person it's most difficult to bestow those two gifts upon is yourself. In the harsh light of progressing disability, past mistakes and missed opportunities become brightly illuminated, and the challenge lies in not only learning from those errors, but also in forgiving yourself for making them. Taking inventory of oneself can be difficult when some of the items hidden in the darkest corners of the soul have been shoved out of sight for a reason. But in confronting them, their negative influences, some of which have manifested for decades, can be weakened and even broken. Although physical limitations may continue to mount, emotional liberation can be achieved.
It is in so many ways a heartbreaking shame that this opportunity at self-knowledge comes at such a dire cost. Without confronting crisis, though, the motivation for such inner exploration is very easily lost among the constantly shifting circumstances of existence. Receiving a serious diagnosis has the effect of pressing the pause button on the ever unfolding narrative of life. The emotional process of confronting chronic illness is searing, but it is this conflagration of the soul that allows for the exposing of the essence within. It is a process, I think, that is never fully complete, and as the physical insults inflicted by the disease mount, it becomes clear that it is the journey, not the destination, from which all lessons are drawn.
I will forever curse this creeping paralysis, but at the same time acknowledge the opportunity for self-illumination it has provided. I've rediscovered parts of myself I hadn't even realized I'd lost. Even as my physical abilities diminish, my essence becomes more and more revealed. The battle with the disease continues, bolstered by a refreshed resoluteness of spirit.