NEW YORK (MainStreet) I am the only person I have ever met who has used medical marijuana, in several of its forms, to kick the "habit" of dystonia, a rare and highly misunderstood neurological condition. That said, I am not the only one to find that pot, among its other attributes, is probably the best, safest and most widely misunderstood arsenal in our available cornucopia of pain-relieving, non-addictive and safe medication.
Yesterday the Washington city council approved a measure decriminalizing marijuana in the nation's capital, and this demonstrates we are on the right path toward wider acceptance of cannabis.
And that's a meaningful trajectory for me personally.
The story that follows is true, as surreal as the experience seemed to me.
When your body and mind scream in unison that all you want to do is get better, that is really all you care about. That is, if you could only stand the nausea-inducing, room-spinning, blackout pain that stops you from even moving much less getting out of bed. When you get sick, in general, particularly with a "chronic" or serious condition, you begin to slide off the map of normal, and unfortunately, for the majority of us who have traveled this road, you have a very hard way back (if that is even a possibility). You are almost always, at least for a couple of days, if not months or years, firmly in uncharted territory that few people have the courtesy or foresight to write home about.
In my case, when at 40 I was finally diagnosed with dystonia, a condition that makes muscles freeze and cramp (with horrific neuropathic pain), I faced not only the nightmare of going through the diagnostic process (without health insurance) but also the fact that neurological care provision, even in the best of times (and fairly unlimited budgets if not platinum level health insurance), is a harrowing experience.
By the time I had survived the transition from TMJ patient through lockjaw misdiagnosis, the left side of my upper body felt like it was being dragged over 1,000 degree needle beds to the point I regularly felt like screaming.
Except for one small detail.
I could not talk, much less push wind up my diaphragm to make a sound at all. I also often could not swallow, and moving at all produced waves of such indescribable agony. There were days when I would not move, even if I had been capable of such a thing. Good thing then that at this point I finally ran out of my 401(k) savings and became officially "poor" enough to qualify for state-funded health insurance. In New York State.
Things did not get much better when the final correct diagnosis came in (after months and months of desperate trying). I was sent to the few neurologists in New York City I could beg for an appointment with via referrals from my local neighborhood clinic (most neurologists and certainly in New York, do not take patients even with state-provided Medicaid, and the problem has worsened in the last six years to the point where I wonder if I would have survived this even one year later).
And then there was this wrinkle. All of the neurologists I saw without fail decided to offer up an unappetizing bevy of pharmaceutical solutions as soon as surgery (destined to leave most with a "shunt" that also often drips brain fluid) was thankfully ruled out.
The medications offered up were so mind-numbingly toxic (not to mention unpronounceable) that I am still surprised in retrospect why my resolute "No's" appeared to surprise those who offered to serve them up. The immediate situation was so dire that the side effects of the pharma soup they responded with made it seem as if probable weight gain in the 200- to 300-pound range, drug related obesity and diabetes (with significant pain still present) and procedures to killing large swaths of nerve endings (with regular, high dosage, painful Botox injections) was better than doing a little experimenting with a willing patient who was smart, desperate and well-informed medically enough, to talk my way into a drug trial.
Guess which drug?
As with all parts of this journey, as with life, there was, however, both good news and bad. To set the scene, and it felt at the time like a flashback to a world reflected in "Dallas Buyer's Club," I knew pretty early and from previous experience that one of the best if not the only highly efficient, non-addictive drugs to fight both extreme nausea and pain (no matter their cause) was pot.
Unfortunately, I was also desperately broke. So there was no handy dealer in the neighborhood I could either drop in on or have deliver. Plus, in the 2007 and 2008 world, not only did federal law still classify marijuana as a "Schedule I" drug, but as luck would have it on a local level, Hizzoner Bloomberg also decided to cut down on pot sales in the Big Apple by giving landlords tax breaks on installing security cameras even in rundown, Eastside walk-up residences.
In an irony played out all over our pharma landscape, however, Marinol, a commercially available (highly expensive yet covered by even Medicaid) pill made out of pure THC was then classified as a Schedule II (highly restricted, except for 30 day scripts). And the coup de grâce? It was also covered by regular, New York State Medicaid.
Even then, Marinol had known efficacy for cancer and AIDS patients. Even in doctor's offices. And that is when I found the trial.
It was a federally sponsored U.S. government deal, out of the blue, to test Marinol on dystonia patients.
That was the good news.
Unfortunately for me, the trial was being held in Toronto, but seizing this one glimmer of hope on the horizon, I persuaded my general clinic doctors in New York (who were also highly resistant to do so), to reluctantly see what we could do.
Again, the reluctance, which I somehow overcame, seems even in retrospect to have been extreme in that it existed at all. Specifically, it does not seem to me at least to stretch the bounds of logic if not compassion, that a person who categorically refuses to be an obese guinea pig showing up for blood tests once a week, and further one who had such horrific allergic reactions to every single other drug "normally" prescribed for the (rare) condition, might be allowed to exert what is otherwise known as educated patient choice if not consent. All of the "normal" meds for a rare neurological condition without fail made me throw up, pass out, break out in hives and suffer various other extremely uncomfortable side effects, without significantly relieving the pain.
Sometimes the symptoms occurred individually, or even more excitingly if not often, in tandem.
It was only after I reported both throwing up and passing out, however, that I think I finally persuaded someone to write the first script for Marinol on a trial basis.
By the time I got my general practitioner to write the first script, I was in such bad shape that I drooled on a regular basis. I could not control either my throat or facial muscles at that point.
Yet how I managed to get passed over for disability benefits at this time (and every time subsequently when I was submitted for review of the same), I will never know. The only excuse I can think of is I was not a Boomer.
Regardless, I showed up at my local neighborhood pharmacy for my first script fill with an anticipation that allowed me to shelve the embarrassment about drooling in public. Plus I was pretty sure the relief would be almost life changing.
I was right.
That night was the first night I got a full night's sleep in a year. Within a week, I could swallow semi normally. By the time I walked, without too much pain, back into the clinic in a month, I could talk in a way that made me sound like I had a minor cleft palate. The instances of being called "Retard" when I ventured out in public had already drastically diminished.
Within three months, I managed such a drastic turnaround that my doctors (when they spoke to me about it at all) could not deny the drastic change.
The road back, even then, and from that minor miracle, has still been long, and littered with many other challenges against a backdrop of a new national interest in legalizing marijuana, particularly for medicinal purposes. One change for the better happened circa 2010, when Marinol became classified as a Schedule III drug. Right around the time when legalization of pot became a viable issue for voters in states outside of California, Colorado and Washington.
That said, there is nobody who can tell me that THC alone was the cure. In subsequent experiments (say, conducted in Amsterdam coffee shops), I know that the added (if not "active" ingredients) in the whole plant work much better.
And what nobody ever really talks about is what happens when you get better. Remember, you test positive for one of the most stigmatized drugs on the planet. Doctor's note? See the circular file along with your application and resume. Send in the next three desperate (healthy non-positive) candidates. It will be easier.
I now live in Berlin. I know, looking back from Europe with an American, that the struggles I went through are those that are still faced by an inordinate number of people who suffer needlessly because of a messed up medical insurance system, a dysfunctional care provision infrastructure and in a country still obsessed, although thankfully less compulsively so, with a "demon drug" that in my case was a wonder cure.
For those who still suffer, or those who care about them, there is indeed hope. I am the living, breathing, swallowing, speaking proof.
--Written by Marguerite Arnold for MainStreet