An Alternative to Hope

The issue of my worsening disability rarely comes up in polite conversation. On those occasions when it does, well-intentioned people, restrained by propriety, offer sentiments like, “One day they’ll find a cure, Mitch. Don’t give up hope.”

Hope. It is a concept no less hallowed than love, peace, kindness, and for some people, faith. I don’t question anyone’s sincerity when they prescribe it for me. Because I suffer from a chronic, incurable disease, however, I find hope routinely over-promises and under-delivers. In my long list of coping mechanisms, hope ranks near the bottom.

I was diagnosed in 2001, purchased my first wheelchair in 2008, and by 2016 I could best be described as a quadriplegic. My tormentor is a nasty strain of MS called primary progressive multiple sclerosis, and it’s kicking my ass.

By our nature, humans are drawn more to stories than statistics. We are motivated by narratives that touch our heart, rather than truths that constrain our dreams. Here’s the truth: modern medicine is chipping away at the edges of illnesses like MS, Parkinson’s, ALS, Alzheimer’s, and more, but we are not finding cures.  Our narratives still don’t produce happy endings. For people with chronic, incurable diseases like mine, hope is not justified by reality.

I have subjected myself to so many treatments over the years — several out of pure desperation — all to no avail. My disease marches on. If I had invested emotionally in the success of these trials, I would have had my heart broken time and again. After one of my early treatment failures, I discussed the concept of hope with a fellow MS patient who suggested, “If you don’t have hope, you don’t have anything, right?”

He could not have been more wrong. As the years passed, and the disease ravaged my body, I remained in relatively good spirits, even though I knew I might never get better. I came to understand that a lack of hope does not necessarily lead to hopelessness. Sometimes acceptance fills the void.

Hope is the sexier cousin of acceptance. On occasion, it produces spectacular results. Books and songs have been written about the power of hope. Yet it is capricious. Acceptance, on the other hand, does its work in the background, steady and true. I learned the power of acceptance from my mother. She lived in a wheelchair for 39 years, not because of MS but a spinal cord injury.

With acceptance, I don’t waste emotional energy lamenting what might have been, envy what healthy people can accomplish, or ask “why me?” With acceptance, I no longer consider my old life as the normal I must return to. Instead, I consider my current life as the normal I must adjust to.

I’m grateful for having enjoyed as many healthy years as I did, for my family and friends, for technology, which helps me navigate the world without the ability to move my muscles, and so much more.

Despite my pragmatism, I am not devoid of all hope. I keep one ear to the MS research world. I evaluate each potential treatment on its merits. During these assessments, I sometimes, against my better judgment, imagine what success would look like. Hope is such an opportunistic emotion that it injects itself where it’s not wanted. But, to the extent I can, I keep hope at arm’s length. Yes, I’m confident that a cure will be found one day. I just doubt it will come soon enough for me. If I’m wrong, and a cure bursts upon the scene, I’ll gladly recant my position on hope, admit my mistake, and make a heartfelt apology to anyone I led astray.

Give hope a chance? Sure, if you are so inclined. But if you’re in a situation like mine, I say give acceptance a chance. It’s a powerful alternative.

The End of CCSVI

“This is the way the world ends

Not with a bang but a whimper.”

T.S. Eliot

We hoped. We prayed (some of us did, anyway). We researched. We organized. The MS patient population and a few sympathetic practitioners stood up to the medical establishment, goddammit! I wrote forty blog posts about CCSVI (forty-one now). But, given what we know today, there’s something that must be said.

I was wrong.

We were wrong.

For those unfamiliar with this saga, the term CCSVI was coined by Dr. Paolo Zamboni of the University Ferrara, Italy, in 2008. The acronym stands for “chronic cerebrospinal venous insufficiency.” Zamboni theorized that restrictions in the veins that drain the central nervous system — the brain and spinal cord — contributed significantly to MS disease activity. Furthermore, he believed opening such restrictions via balloon angioplasty or the placing of cardiac stents could improve MS outcomes.

The medical establishment would have none of it. With few exceptions, the neurological community, a.k.a. MS doctors, rejected the concept. Many, like my neurologist, supported patients’ efforts to obtain this treatment, knowing that they had nothing better to offer us. But a handful of mainstream neurologists spoke out vigorously against any attempts to pursue CCSVI further.

Nevertheless, a few rogue medical professionals set up research projects and began treating patients for the condition. The medical establishment accused the rogues of acting irresponsibly, risking the health of MS patients, and perhaps worst of all, profiteering from misguided, gullible, vulnerable patients.

To this day, I insist I was only slightly misguided, but I was neither gullible nor vulnerable. I was not a victim. I was simply desperate.

Online patient groups arose organically and became vocal. We wanted to be treated immediately, not years down the road. A group of us patients possessed a scientific slant, and we formed an organization called the CCSVI Alliance, complete with a website called CCSVI.org. We organized the growing body of technical information both for and against the theory.

I must admit, however, that we were not impartial. We advocated for CCSVI. We had a positive bias, and this was reflected in our work. To our credit, the CCSVI Alliance eschewed the anecdotes, the miracle YouTube videos showing individuals rising from their wheelchairs. We sought out the studies and facts, such as they were. But all the scientific papers lacked one thing—the gold standard for potential treatments—placebo-controlled clinical trials.

Reacting to immense pressure from the patient community, mainstream organizations began funding such blinded trials. When the results of these trials didn’t support the theory, we questioned the trial designs and thus the outcomes (sometimes with justification, sometimes not). Finally, Dr. Zamboni himself began a blinded clinical trial, and the results became available a few weeks ago.

Dr. Zamboni’s team concluded that CCSVI treatment doesn’t work. “The procedure cannot be recommended for treatment of patients with MS; no further double-blinded clinical studies are needed.”

For a more detailed discussion of the trial results, I recommend the article written by the MS Research Australia website. I’ll leave it to other bloggers to dive into the weeds. Instead, I’ll address the effect that our pursuit of CCSVI has had on the MS population.

I had CCSVI procedures conducted not once but twice on the veins that drain my central nervous system. I approached these procedures hopeful but not confident. In 2010 I went to Brooklyn, and in 2011 to Albany. I experienced no benefit from either procedure. I experienced no problems either. I experienced nothing. Worldwide, thousands of patients were treated, with the number of procedures peaking in probably 2011 or 2012.

Then, as more and more patients saw no lasting benefit, the phenomenon slowly lost its momentum, and for the past several years very few doctors continued to treat, and very few patients sought them out. One could argue that CCSVI died years ago, but this is the final nail in the coffin, if you will. The founder of the movement has disavowed it. This is the way CCSVI ends, not with a bang but a whimper.

How do we keep something like this from happening again—keep patients from chasing ineffective treatments, keep precious research dollars from being wasted? We cure the damn disease, that’s how. Until such time, patients will take matters into their own hands and demand treatments before they are fully vetted. We will take risks. The odds are, for any given treatment, that the results will be unsatisfactory, but there is nothing so unsatisfactory as being told to sit down and be a good patient.

I’ll acknowledge that a certain segment of the MS population experienced significant and lasting improvement from their CCSVI treatments. I can’t explain that, and I don’t have any interest in doing so. To you folks, congratulations. For the rest of us, it’s time to move on.

With so many technological and organizational tools available to patients, so many lives being overwhelmed by progressive diseases, and a drug approval process that takes much too long, these patient-centered movements won’t stop. You can count on it.    

Listen to My Interview With Kate Milliken, MS Activist Rock Star

To hear this podcast: click here

This is Mitch Sturgeon who is a user of MyCounterpane.com, as well as the founder of enjoyingtheride.com. Are you living with MS, progressing and feeling scared about it? This podcast is for you.

MyCounterpane

Hellooooo Lean Into Lonely, our first podcast, where MCP founder Kate Milliken dives into deeply personal moments of lonely from the people she knows. Why? Because more and more, we at MyCounterpane understand that we are ALLL…

API.MYCOUNTERPANE.COM