I had the honor of being invited to share my story on the podcast “Healing Heroes,” led by Nicolette Richer, PhD and CEO and founder of Green Moustache Cafe (https://www.greenmoustache.com/) based in Whistler, Canada. I met Nicolette at the annual conference of The Physicians Committee for Responsible Medicine in 2018. I have enormous respect for her work. The interview is about 30 minutes and it tells my story of diagnosis until discovery of my role in my health. To listen, click here.
My life changed radically for the better when I learned that a mountain of scientific research shows that my daily choices make the difference between wellness and disability in MS. Every day, every bite I eat, every decision I make, I think, “will this keep me healthy?” If ever I am tempted to make a “bad” decision, I ask, “French fries or a wheel chair?” I am motivated. I can easily unplug my temptation. I am empowered. My future is in my own hands.
But what about my past? I cannot help looking back at my life and asking: what did I do to trigger MS? Continue reading “Why Me?”
As I began drafting this story in September 2018, I had a very bad opinion of the U.S. National Multiple Sclerosis Society (NMSS). I know some feel much more positively about it, and that’s not a bad thing. Whatever gives hope to someone with MS, I’m all for it.
The nature of blogs is openness, to a fault at times. Anonymous blogs give writers a license to speak recklessly. Honestly, I want to slam NMSS based on my own perspective, but I value facts, so I decided to reevaluate my opinions. Continue reading “The National MS Society”
Don’t giggle. OK, go ahead and giggle a little. Get it out. Then keep reading. As I researched this topic — medical marijuana for MS — I found that about half of my friends responded with a half-baked smile, while the other half spouted statistics about billions in tax revenues.
Call me a party pooper, but I actually don’t care about getting high or tax revenue, though I hugely appreciate any issue that acts as a lever to legalize marijuana.
I care only about staying mobile and healthy with MS for as long as possible. Forever would be nice. Since I live in the Commonwealth of Virginia, where marijuana is fully illegal as of 2018, I also really care that I could lose my job (and health insurance) if a random drug test finds an illegal substance in my blood, even with a prescription. Even in states where marijuana is legal — for example, California, Colorado, Michigan — legal complications are ugly and serious.
If you read my other blog posts, you know that my wellness strategy for MS is based on a whole-foods, plant-based diet, but I am constantly searching for additional science-based approaches to keep me healthy for as long as possible.
The topic is so complex that I am incapable of explaining most of it succinctly or accurately in my humble little blog. The agenda of the Second National Cannabis Policy Summit in April 2018 brought together representatives of Congress, The Brookings Institution, the Attorney General of DC, doctors, lawyers, civil rights activists, journalists, lobbyists, and others to discuss the most pressing policy challenges and opportunities. For the mildly curious, this 11-card deck provides a nice overview, and for the more curious, this Cannabis 101 series of short videos answers a wide spectrum of questions. Consumer Reports provided a simple set of guidelines on how to shop for CBD.
One aspect that directly impedes my ability to understand how the heck medical marijuana could benefit (or harm) my health with MS is Schedule 1 classification. According to the Controlled Substances Act signed by Richard Nixon in 1970, the federal penalty for trafficking less than 50 kilograms of marijuana, a Schedule 1 drug, is no more than five years in federal prison and up to a $250,000 fine for the first offense. Ouch. Schedule 1 drugs (e.g., heroine, marijuana) are regarded to have no medical value.
One doctor, Mikhail Kogan, who happens to be my primary care physician, is a leader in the campaign to increase research into the efficacy of medical marijuana. As the medical director of The George Washington Center for Integrative Medicine, Dr. Kogan is optimistic but cautious about the powerful compounds in marijuana.
So what about MS? I was surprised at the unequivocal terminology used by a few very reputable sources. Dr. Kogan pointed me to a 2017 report by the National Academy of Sciences, Engineering, and Medicine, described as one of the most comprehensive studies of research published since 1999 on the health effects of recreational and therapeutic cannabis use in a spectrum of illnesses, from cancer to MS to HIV to depression, etc. You can download free chapters (including Chapter 4, Therapeutic Effects, referencing MS) or buy the $65 full report. Conclusions included:
Conclusive or substantial evidence that oral cannabis or cannabinoids are effective for improving patient-reported multiple sclerosis spasticity symptoms (oral cannabinoids); and
Moderate evidence of improving short-term sleep outcomes in individuals with sleep disturbance associated with…[lots of other things and] multiple sclerosis (cannabinoids, primarily nabiximols).
The report highlights the need for a national cannabis research agenda that includes clinical and observational research, health policy and health economics research, and public health and public safety research.
There is also the 2017 article, Cannabis and MS – The Way Forward, published in Frontiers of Neurology of the U.S. National Institutes of Health. The article can be summed up with the following excerpt:
…There are many open questions regarding cannabis use [as an MS therapy], including optimal strains, frequency of use, other dosage questions, risks of long-term use, and which symptoms it effectively treats. These are all important questions in which the NIH and MS foundations should be interested. Unfortunately, up to date, NIH has not funded research grants on the benefits of cannabis in MS (10). Furthermore, there are no current research projects on cannabis funded by the National MS Society (11). Why is this the case? We hypothesize that while grant reviewers make the argument that randomized controlled trials (RCTs) are needed for this research, few if any are possible in the current legal framework…
Nice. Bight me, legal framework. And while I am at it, the U.S. National MS Society can bight me too, since they should be out in front, advocating for sensible legal reform benefiting people with MS. The article also explains the twisted institutional knots and bias that obstruct serious scientific research to answer a long list of questions.
In the margin of this article, several links are provided to other articles on MS and medical marijuana. In the same publication, this 2018 article — Cannabidiol (CBD) to Improve Mobility in People with MS — caught my attention. A quick summary:
…Based on the following considerations, it is our opinion that CBD supplementation maybe advisable for people with MS (PwMS) to reduce fatigue, pain, spasticity, and ultimately improve mobility…It is clear that more research is needed. However, because of the safety of CBD and if the concerns listed above are accounted, we are in the opinion that we already have some good reasons to believe that CBD enriched cannabis is useful to improve the mobility of PwMS.
This article also looks at key considerations, including risk of addiction, contraindications, labeling inaccuracies, and the possibility of testing positive for marijuana.
I am left with a whiff of hope and a mix of disgust and sadness that potential solutions are stuck behind the bureaucratic stupidity of Schedule 1 classification. Regardless of these barriers, the 2017 article mentions that approximately 50% of people with MS already use cannabis, and the 2018 article mentions that 66% of people with MS use cannabis. Time matters for people with MS. Time waiting for reform is time lost to disability. Screw that. No seriously, screw it.
Dr. Kogan prescribed medical marijuana for me in early 2018 in the form of CBDa, one of many, many strains of marijuana, which I take in a tincture (droplet) form in a base of MCT oil to aid absorption. This mix is super tasty. Less tasty, flaxseed oil has the highest Omega-3 content, which is recommended – unrelated in any way to marijuana – by Overcoming MS, but flaxseed oil requires constant refrigeration.
A few questions that I asked when considering whether and how to take CBDa follow:
Dose? Thanks to the scarcity of large-scale studies caused by institutional obstacles, it’s currently impossible to say. In this podcast, Dr. Kogan speaks with Dr. Donald Abrams, one of the world’s leading clinical researchers on medical cannabis and an integrative oncologist at the University of California San Francisco, about the total lack of nomenclature for dosing. In DC, where medical marijuana is legal, Dr. Kogan is not legally able to advise patients on what strain of cannabis to take.
As an impatient patient of MS, I ask: how fricken stupid is that?
Kogan asks, “How do we guide our patients?” Dr. Abrams responds, “That’s the $64,000 question. Go to the dispensaries, tell them what medical condition you have; they deal with other patients who have what you have. See what they recommend.”
Generally, the guidance is to start low and go slow. After more than six months, I take roughly two full droppers (5 mg x 2) of CBDa in the morning and evening.
Source? I get my CBDa from a person recommended to me by Dr. Kogan. He has been to this person’s production facilities in Vermont, where the hemp plant is grown organically. The producers than send every batch to MCR Labs in Massachusetts.
Safety? MCR Labs produces a report on the contents of the tinctures that my source produces and sends to me. I provide a screen shot below of the batch sent to me in February 2018. Notice that THC, the psychoactive portion, is at 1.75%. In other words, an illegal substance could show up in my blood test, but the amount would be so low that I could pass the test. However, for whatever crazy reason, it could generate questions/concerns, and so my source told me bluntly, “it is a risk” that my employment could be terminated.
Price? I pay (in 2018) $50 per 300 mg bottle, which lasts roughly a month (or two; my adherence has been imperfect, even with no official guidance on dosing). No, it is not covered by insurance.
Why in tincture form? The veins under our tongues bypass the digestive system, specifically the liver and metabolites, which could mitigate the impact of powerful compounds, and make a bee-line for our brains. Since MS is a disease of the central nervous system, a tincture gets the CBDa to its destination more directly.
How does CBDa make me feel? You know that awesome feeling after you blink? No? Right. That’s how euphoric I feel after taking CBDa. I get no high — zero, zip, nada. That’s what most people seem to want to know. As I said, I do love the flavor. It’s like you have the freshest pine tree under your tongue for a couple minutes. Wow?
So why do I bother with CBDa, given that it ain’t cheap? Several reasons:
First, it is neuro-protective and possibly neuro-generative, so I consider CBDa an additional insurance policy — on top of a meticulously healthy diet, exercise, meditation, and other critical daily routines — for the care and maintenance of my central nervous system, slightly bedraggled after nearly a decade of doing nothing beyond MS drugs after my MS diagnosis in 2003.
Second, medical marijuana has demonstrated clinical benefits and promise in U.S. government-funded studies for MS (linked above) and cancer*, and the FDA approved medical marijuana for pediatric epilepsy**. How can the FDA recognize the therapeutic value, while the definition of a Schedule 1 drug is that there is no medical value? The U.S. government needs to get its ducks in a row.
I am not willing to wait for the political knot to be untangled; I am willing to risk my employment because I can get another job, but I can’t get another nervous system. I feel sorry for anyone whose job is to deny someone access to potential therapies for pain, seizures, immobility, spasticity, etc.
Third, I share with a bit of embarrassment, but in the spirit of truth made easier with an anonymous blog: CBDa seems to have saved me from wicked night sweats, which could result from a spectrum of causes (e.g. peri-menopause, cancer, etc), but which are definitely a symptom of MS rarely discussed in polite company. I had them almost nightly for about a year; now with CBDa, they are an occasional whisper of their former raging strength. That’s the only (but very welcome) physical change I have noticed since starting CBDa, but it makes me wonder what other benefits I could be accruing.
Plant versus pharmaceutical? Dr. Kogan said that there have been so few large-scale studies on medical marijuana that any commercial supplier that says they know the right dose/strain for specific ailments is not being honest.
For me, as long as I have a safe source of medical marijuana, I prefer the basic plant. Beyond my fascination with the science behind the power of a whole-foods, plant-based diet, I learned something mind-blowing: Have you ever heard of your body’s EndoCannabinoid System (ECS)? I had not. Thanks to Wikipedia, I learned that the ECS is a biological system composed of endocannabinoids, which are endogenous lipid-based retrograde neurotransmitters (huh?) that bind to cannabinoid receptors and receptor proteins that are expressed throughout the mammalian central nervous system, including the brain and peripheral nervous system.
What actually is a cannabinoid [kuh–nab–uh-noid]? Simply, it is any of the chemical compounds that are the active principles of marijuana, the dried leaves and and female flowers of the hemp plant (Latin: Cannabis sativa). Cannabinoid = hemp = marijuana = cannabis. It’s far more complicated than that, but my non-scientific brain needs the Dummies version.
So, our bodies have receptors for the cannabinoid compounds in the hemp plant. That factoid brings renewed significance to the power of plants. Wow.
In conclusion, I am not endorsing medical marijuana for you, and I certainly do not feel it is a stand-alone silver bullet. This blog is an attempt to explain why I include it in my large toolbox for wellness. Perhaps someday, reputable research institutions can conduct rigorous, large-scale, double- and triple-blind studies on the bio-mechanics of cannabinoids for MS. Then, if the evidence continues to show efficacy, I hope that insurance companies will make medical marijuana available and affordable to everyone with MS. I can’t imagine how many years that will take, but I am not waiting. Until then, I’ll just enjoy my tasty pine-tree flavored treat.
*Excerpt from link: To summarize, cannabis and cannabinoids are useful in managing symptoms related to cancer and its treatment. Exciting preclinical evidence suggests that cannabinoids are not only effective in the treatment but also in the prevention of chemotherapy-induced peripheral neuropathy. Cannabinoids could be synergistic with opioids in the relief of pain. The safety profile of cannabis is acceptable, with side effects that are generally tolerable and short-lived. Preclinical data suggest that cannabinoids could have direct anti-tumor activity, possibly most impressive in central nervous system malignancies. Clinical data about the effects of cannabis concentrates on cancer are as yet unavailable. Oncologists could find cannabis and cannabinoids to be effective tools in their care of patients living with and beyond cancer.
**Excerpt from link, “…The FDA needed to see solid evidence, meeting rigorous criteria, before approving any cannabis-derived drug for medical therapy. And [this] is the first drug to have achieved these high standards.”
Dr. Caldwell Esselstyn, a barely-retired, 84-year old cardiac surgeon who spent his career at the Cleveland Clinic, said that medicine is “on the cusp of what is truly a seismic revolution.” Dr. Neal Barnard, president of The Physicians Committee for Responsible Medicine, spoke to an audience of a thousand medical doctors, nurse practitioners, and a few people like me — poster children with widely-assumed incurable diseases, treating ourselves with the simplest medicine: nutrition. We were all attending the August 2018 International Conference for Nutrition in Medicine. Dr. Barnard opened by saying that we are on a “wave that hasn’t even begun to crest.” I believe it, if this crowd is any indication of the future.
So many courageous leaders in healthcare spoke at this conference, and not surprisingly, I learned a lot. For example, according to Dr. LaQuandra Nesbitt, director of the District of Columbia Department of Health, there is a greater than 20-year gap in life expectancy between different neighborhoods in Washington, DC. In other words, as she put it, one’s zip code has a greater impact on longevity than one’s genetic code. Here (NYT and food banks) and here (Jack Monroe) are two perspectives that help explain how this could be.
We cannot ethically let this continue, can we?
At lunch, I joined a table of 10 strangers, most of whom were medical doctors in some version of family practice. Listening to them during our short lunch, my opinion of these doctors changed from awe to pity. After all, according to U.S. News and World Report, not one of the top 10 medical schools in the U.S. had an acceptance rate above four percent in 2017. For example, Georgetown University medical school received more than 14,000 applications, but less than three percent of applicants were accepted. My lunch mates were the creme de la creme of achievers in our country and the world. I hardly felt worthy of sitting with them.
And yet, one after another, each doctor described grueling hours and administrative hell in their daily work lives. They were attending the conference for continuing medical education credits, but nothing about the actions of this lunch group — a small sample of the one thousand attendees — were perfunctory. They were all committed to the seismic revolution in health care anticipated by Dr. Esselstyn. Many were volunteering their time and self-funding cooking classes or information sessions after office hours for their patients. At the same time, they were all beaten down by the stress of 15-minute time slots in which to counsel patients about their options for advanced diseases, like diabetes: drugs, diet, or death. Time is up! Good luck!
One 40-year old doctor told me that her employer, a large medical facility, would reduce her annual income if she did not meet specific performance targets. I asked her to explain these targets; I only understood that the targets were administrative gobbledygook — nothing to contribute in any measurable way to her patients’ wellness. She said that she has nearly a million dollars in debt from medical school, was burnt out from the moment she finished medical school, and living with her mother to make ends meet.
We cannot ethically let this continue, either, can we?
Another doctor, Saray Stancic, a keynote speaker at the conference who also has MS, is asking these same questions. Her website explains that her focus is shedding light on the building body of scientific evidence supporting the importance of optimal nutrition and lifestyle in disease prevention. With the help of Kickstarter, she is producing a movie, Code Blue: Redefining the Practice of Medicine, to examine these issues.
As a patient, I have always assumed that doctors could change the tide of medical stupidity, and yet now it seems to me that many doctors are irretrievably stuck. Events like this conference gave us all hope that things will be better. With 86% of our three trillion healthcare system spent on chronic illnesses, we do not have a choice.
I spend much of my free time researching how the U.S. healthcare system can be fixed; day-dreaming about a day when my neurologist will not react angrily when I tell him that I have chosen diet over drugs as my strategy for wellness. According to a March 2018 article in The Hill, “…agricultural subsidies cost taxpayers about $20 billion a year: This includes a massive transfer of wealth from taxpayers to mostly large agribusinesses that are (or should be) fully capable of managing their business operations without this special treatment.” Those subsidies should be directed to health-promoting initiatives, including production of organic fruits and vegetables. Not juices and sugary snacks. Just plain old-fashioned apples, spinach, etc.
The science is so fricken overwhelming for the efficacy and cost savings of nutrition in wellness that I literally get tired of reading the same repetitive, albeit inspiring, medical outcomes. Maybe apples and spinach aren’t sexy enough to catch people’s attention. Hmmm, how can apples and spinach get sexier?
Cue wildly successful Hollywood producer, James Cameron, and muscly 71-year old Arnold Schwarzenegger. Cameron’s next movie due in 2018, The Game Changers, is billed as “a shocking expose of the world’s most dangerous myth: that meat is necessary for protein, strength, and optimal health.” The movie follows elite special forces trainer and winner of The Ultimate Fighter, who traveled the world and “What I discovered was so revolutionary, with such profound implications for performance, health, and the future of the planet itself, that I had to share it with the world.”
I welcome the Hollywood sparkle, while recognizing the *army* of scientists, researchers, and other professionals pumping out mountains of data that said/says the same damn thing, starting decades ago.
I am also learning from unexpected places. Since 2017, my day job is as a project manager on a U.S. federal government contract funded by the United States Agency for International Development, supporting the President’s Emergency Plan for AIDS Relief (PEPFAR). It is the biggest contract ever awarded by USAID: $9.5 billion (yes, that’s a b). Big.
I was initially conflicted about the possibility of working on a project associated with Big Pharma, who royally pissed me off in my little MS corner of the world. My older sister, who has for my entire life never failed to tell me when I am being an idiot (for which I am grateful), became increasingly alarmed as I became more vocal about my mistrust of drug companies. One day after listening for the 100th time to my tirade against drug companies, she finally spoke up, saying “Drugs are not all bad! Childhood leukemia is no longer a deadly disease. The AIDS virus can be suppressed so that patients can live practically normal lives.” I could not argue with her.
From there, I began examining and questioning how my experience fit into the reality. Was I totally wrong? No. Indeed, communicable diseases like AIDS and chronic diseases like MS are fundamentally different. But maybe I could borrow important lessons from AIDS to contribute to a better future for MS and other chronic illnesses. From the United Nations (UNAIDS) website, one can quickly see how clear goals can be a catalyst for action:
- By 2020, 90% of all people living with HIV will know their HIV status. (There are currently 36.9 million people living with HIV. Just 75 percent know they are HIV positive. The rest do not.)
- By 2020, 90% of all people with diagnosed HIV infection will receive sustained antiretroviral therapy (ART). (Three out of five people are on ARTs.)
- By 2020, 90% of all people receiving ARTs will have viral suppression. (Only 47% in 2018 have undetectable levels of HIV.)
When asked if AIDS is a chronic illness or a deadly disease, Warren (Buck) Buckingham III, responded that it depends on where you live. Hmmm, sounds like the words of Dr. Nesbitt regarding your zip code and gentic code for longevity.
By contrast, approximately 133 million Americans, representing more than 40% of the total population of this country have a chronic illness, according to the National Health Council, and that number is projected to grow to an estimated 157 million, with 81 million having multiple conditions. What will it take to wake up the beast of the American consumer?
So I accepted the assignment on the $9.5 billion AIDS project. To give it my best effort to prepare to join this team, I read two books recommended by a woman team leader, who works on this giant project and whose dedication to overcoming the AIDS epidemic mirrors my own passion for overcoming MS: And The Band Played On (by Randy Shiltz) and My Own Country: A Doctor’s Story (by Abraham Verghese). From MS, I understand the profit motive in illness, but I never fully understood the politics of illness until I read these books. You must read them to believe them.
In a nutshell, the U.S. government stalled far too long – decades – before it paid serious attention and dedicated sufficient resources to the AIDS epidemic. Many millions of people died horrible deaths, waiting for projects like this one.
Like AIDS in its early days, chronic illness today is not being taken seriously by the U.S. government. It was the same story with cigarette smoking, when doctors promoted it. As of July 2018, only 26 of 50 U.S. states have enacted statewide bans on smoking in all enclosed workplaces, including all bars and restaurants. Wake up, please.
Unlike AIDS, chronic illness is not as much of a mystery as drug companies would have us believe. In the 1980s, AIDS sparked an international race to identify the virus and develop drugs to suppress it. For chronic illness today, we already know a lot about the root cause of and how to prevent and reverse heart disease, diabetes, cancer, even some cases of MS, and so many other chronic illnesses. We also know that current agricultural and food policies, school lunch programs, subsidy programs, etc. establish perverse incentives and promote more chronic illness.
What we need is courageous public officials to regulate and legislate wellness into our food and education systems. I dream of a gigantic federally funded program — or even a coordinated national government initiative — to address the crippling problem of chronic illness in this country. In the meantime, there are a growing number of private groups, like The Physicians Committee for Responsible Medicine, The T. Colin Campbell Center for Nutrition Studies, etc etc etc; the list is long — churning out huge amounts of research so that, I believe, someday during my lifetime, we will look at today’s U.S. healthcare system as we now look at smoking. And we will ask: what took our government so long to wake up?
Four out of five. Eighty percent of my family has been diagnosed with a chronic illness. I am crazed by my failure to convince them and everyone else I love to adopt my way of thinking about the connection between diet and disease.
What am I doing wrong?
I realize that it is insanity for me to try to change anyone. Since 2011 (seven years at this point) since I changed overnight from a junk-food junky to a whole-foods, plant-based eater, it’s still hard enough to ignore that voice in my head that really wants junk food.
But how can I just sit quietly and watch it happen? According to An Empirical Study of Chronic Disease in the United States*:
“More than two thirds of all deaths are caused by one or more of these five chronic diseases: heart disease, cancer, stroke, chronic obstructive pulmonary disease, and diabetes. Additional statistics are quite stark: chronic diseases are responsible for seven out of 10 deaths in the U.S., killing more than 1.7 million Americans each year; and more than 75% of the $2 trillion spent on public and private healthcare in 2005 went toward chronic diseases…What makes treating chronic conditions (and efforts to manage population health) particularly challenging is that chronic conditions often do not exist in isolation. In fact, today one in four U.S. adults have two or more chronic conditions, while more than half of older adults have three or more chronic conditions.”
MS is not even on the list, though I am among 400,000 people in the U.S. (2.5 million worldwide) with this chronic disease. Officially, nobody dies of MS. Right. MS can just make you feel sidelined from life. Which is, I guess, better than dead.
I believe that all chronic diseases are the same wolf in different sheep’s clothing. That wolf’s name is inflammation, which initiates and promotes diseases of a wide variety. Each person’s genes define how that inflammation manifests itself. The scientific evidence is so fricken mountainous that it kills me that this factoid is not common knowledge.
From both personal experience and a lot of reading/research (see my Stuff I Love section), I know that our bodies have an awe-inspiring capacity to heal. Whole foods, exercise, stress management, and so on — they will promote lasting healing. While drugs save people with illnesses from a lot of suffering, I know that those drugs do not address the root problem and have many big-bummer side effects.
I would like to run around screaming bloody murder, but I try not to be a blatant freak. And since I have no medical training, I can’t blame anyone for patting me on the head when I preach. But I do have 15+ years of experience with a chronic illness, so can’t I warn people not to jump on this bandwagon to hell?
My older brother also has MS. We have no family history of MS — yes, that’s nuts. During a visit to his home, he lovingly served a bowl of sherbet to me after a great vegan dinner that he and his wife had made especially for me, and my eyes bugged out: dairy??? Don’t you know…don’t you care…don’t…d…” I was speechless. He might as well have served me a plate of venomous snakes, given the clear science on the effects of dairy (casein) on MS. He urged me to relax because “sherbet isn’t ice cream.” I felt ashamed by my knee-jerk reaction and my doubt that my brother would ever do anything knowingly to hurt me, so I gobbled up the sherbet. While we cleaned the dishes, I guiltily checked the ingredients on the sherbet box. First ingredient: milk. Big frowny face.
My brother is six years older than I am and was diagnosed with MS several years *after* I was diagnosed. His MS is in many ways less aggressive than mine, even though he is a true omnivore. I believe his MS success can be attributed at least in part to the fact that he exercises seven days a week, whereas I go to the gym three times a week. I feel like a turd for preaching to him. That said, I fear what my life would be if I hadn’t made radical changes to my diet, physical activity, and stress.
My mom was diagnosed as pre-diabetic several years ago. I was so excited to give her the great news! Studies are so clear that diet choices can save you from the ravages of diabetes. I begged her to read The China Study several years ago, which she said she did. Still, knowing all too well my obsession, she said carefully: “I am 75, and I am not going to change.” Another big frowny face. My mother! If I can’t convince my own mother, I need to reevaluate my messaging and keep trying. I have felt responsible for just my family. I had a 10+ year head start in this world of chronic illness. I should know better how to convince them.
It was my husband who changed my mindset, but I resisted, kicking and screaming. Back in 2010, he decided to become a vegetarian based on his concerns for animal welfare in industrial agriculture facilities. I told him that I didn’t want to be “that couple” that required dinner hosts to adapt their dinners to his weird needs. I genuinely worried that he would damage his health. Then I started to read, and read, and read, and read all the reasons that the standard American diet (SAD) is doing damage to animals, the earth, our bodies, our economy, and so on. Based on a mountain of scientific research with evidence of the health benefits, particularly for chronic illnesses, I leaped head first into vegan evangelism. I wondered why everyone else wasn’t leaping with me.
Recently, my 77-year old dad admitted that he too had been diagnosed as pre-diabetic. God! I felt surrounded and defeated. Chronic illness is no longer just in statistics. It is invading my family. I am the youngest and was the first in my family to be diagnosed with any illness. I should know how to help them to prevent their illnesses.
Only one (my older sister) is free of such a diagnosis. It literally kills me that I cannot convert them all so that we are safe from suffering, if that is ever possible.
So my heart burst with joy when my dad wrote me an email to let me know that he had cut out meat and dairy for the past month, while adding, “Why again do we not drink milk?” First, I was touched that he had launched into this big change without fully understanding the rationale. Second, we! Glee! Happy dance! My frown may start turning upside down! Somebody listened! And it’s my own dad!
I do not want to watch anyone I love suffer in pain or discomfort in his or her old age. I want us all to live well with a sound mind and body until we all die peacefully of “old age” in our sleep. Why should that be a crazy dream? Nowadays, it definitely seems crazy.
We all know that saying, “When the student is ready, the teacher will appear.” I was the tardiest student there ever could be, so I have got to accept that others will go at their own paces. I am trying very hard to focus on myself and not be “that person” who pesters and preaches, and who my friends and family barely tolerate. Given the statistics, though, I cannot be completely passive. I will aim to offer my loved ones an example of someone who is living well with MS. That’s all I can do.
The only people who know I have MS are my closest friends and family. I work hard to keep this circle small because I abhor the expressions on people’s faces when they learn of, well, my incurable disease. The silent stares of pity while, I imagine, they imagine me in a wheelchair. The knitted, upturned eyebrows of worry when they learn that I don’t take “life-saving pharmaceuticals.” I know that I should welcome the compassion. Instead, I just want to punch their sad faces. Even their cheery, generic words of encouragement make me angry. (Hey, anonymous blogs permit blunt honesty.) I feel a gaping, impassable divide between us: the healthy (them) and the convicted (me). Convicted with a life sentence. I don’t want to be reminded. I am quick to remind anyone with ears in this small circle that it has been more than 15 years since my diagnosis, and I have no wheelchair, no cane. I meet my 10,000 step goal each day. Ten thooooousand, that is.
For those to whom I would never divulge my diagnosis, I work very hard to project an image of extraordinary health. I refer not infrequently to my experiences running two marathons (two! not just one; two, I said!), playing on high-school and college teams (I was a tennis-doubles champion! voted “most improved in a single season” on my swimming team!), trekking in the Annapurna range in Nepal’s Himalayan mountains (with a giant backpack and no prior training because I am so darn strong and a little dumb), navigating the uneven pavement on the twisted streets of Hanoi (code words: uneven pavement — a colorful description for most, but a nightmare for anybody with walking problems…not me! I am so healthy, I didn’t even notice the uneven pavement, except I really, really noticed). I have done all of those things over the years and more. More, I said! I don’t mention that most of those activities happened before my diagnosis. While I am still very active, MS has limited me in some ways (a future story).
For both groups, I am “in the closet.” While, truthfully, some days are good and some days are bad, my constant message is: don’t worry, I am great! I am sooo healthy! I practically brag that a bizarre side effect of MS is that I get the common cold much less frequently than the average person. I don’t go into detail about the reason why: my immune system is in over-drive and tends to attack everything from the occasional bug to my own spinal cord. Details.
I feel a distinct pang of guilt for lying to anyone whom I convince that I am healthy because each person’s “disease course” with MS is unique. Despite all of my efforts toward health, I still have an incurable disease and could end up in a very, very bad situation. Let’s be honest. Officially, nobody dies of MS; however, I *know people* in their 30s and 40s with MS in nursing homes on 24/7 care, and the mother of Dr. George Jelinek (who also has MS and is truly as healthy as a horse) died from complications of MS. Dr. T. Colin Campbell says in The China Study, “No group of diseases is more insidious than autoimmune diseases.” Insidious. Ugh. Definition: “stealthily treacherous or deceitful; operating or proceeding in an inconspicuous or seemingly harmless way, but actually with grave effect.” Waaaaaa.
Most of the time, my “lie” is harmless — I spare my friends, family, and even strangers of worry, and their lives mostly won’t be negatively impacted if my health declines. But in some ways, my proclamations of good health are the worst kind of lie. My husband will absolutely suffer from declines in my health — our plans for an international and active retirement — poof. Of course, he could divorce me (and I would let him do it without objection), but I know it would break both of our hearts because we have such a nice life together.
For my employer, which sends me on assignments overseas to conflict zones or developing countries with plenty of uneven pavement — what would be the cost of medically evacuating me, if I am incapable of doing that work that I love? In fact, I did not divulge my MS when I accepted a two-year assignment in Kabul, which in retrospect was an invaluable, life-changing experience. In our pre-travel, preparatory “hostile environment awareness training,” we practiced defensive tactics in gun fire, which required me to run a short distance, bent at the waist with my head tucked down. I could do it, but only just barely, but I convinced the trainers that I was capable. Before and since then, I have taken many assignments overseas without any noticeable problems. If I had told my employer that I have MS, and they had not allowed me to travel due to fears and stereotypes of the worst MS scenarios, what would I have lost? As well, what risks did I knowingly incur for myself and my employer? Was I selfish, stupid, or hopeful — or maybe all? I think quite a lot of one of my favorite books, “Crime and Punishment,” in which the main character’s mental health rapidly disintegrates from the guilt of getting away with murder. It’s not such a stretch. This s#!+ could get real.
But is it selfish to be hopeful; to stay “in the game?” Clearly, I don’t want to be “left out” because of what might happen some day. Is it OK to have hope? Yes, absolutely, definitely, uh-huh, yep. There is huge hope, based on scientific evidence, that overcoming MS is possible (see the “Stuff I Love” section on my landing page). I devour anything that fuels my favorite theory: nature loads the gun, but the environment pulls the trigger. My daily choices are a big part of that environment. I believe in my heart — and now I have mountains of evidence to support — that I will stay mobile and healthy if my daily choices are impeccable: if I exercise, eat big organic salads, use only toxin-free beauty products, meditate, sleep a minimum of seven hours each night, journal, cultivate healthy relationships, and spend a lot of time with my beloved, furry pets. Phew, it is a full time job being impeccable.
Except when I am not impeccable, and then I feel a tidal wave of guilt for likely (yes, very likely) subjecting my loved ones to the burden that MS has the real potential to become. I swear that 99% of the time, I reject the cookie or whatever other zillion temptations with which we are pummeled incessantly in the U.S. The other day while on vacation, I ate a microscopic piece of baklava (no wider or taller than the top joint of my pinky) because it looked really, fricken tasty, and I didn’t want to be a party pooper. Everyone else’s pieces of baklava were multiple times the size of mine, and my friends looked so carefree and happy eating it. I actually figured that I had some karmic credit for being so impeccable on so many other days/months/years.
The next day, I got a familiar, totally predictable rash at the corners of my mouth that happens whenever I eat dairy. The rash was just like the eczema that covered my face like a hard mask of red crust for more than a decade before I changed my diet to vegan. Other times, I stay up too late doing something fun and get fewer than seven hours of sleep. I figure that fun cancels-out sleep deprivation in the mysterious cosmic equation. Or does it? No, I am here to remind myself (a blockhead) and you that I am fooling myself, and the cumulative effect of bad choices is bad health for me. For others, enjoy the baklava!! But for me, keep my eyes on the prize of good health. That prize is a million times more enticing than the baklava, even while others knit their eyebrows in pity or confusion, depending on whether they know that I have MS or think I am just a radical health nut and party pooper. For me, dessert is an orange (or whatever fruit). I will never deny that I.want.that.fricken.baklava, while still I marvel at the awesomeness of Mother Nature that provides everything we need, including dessert.
Impeccability is impossible. I know that, logically. But to those with MS who doubt it or who, like me, were mostly symptom free throughout the decade following diagnosis: I say, proceed with extreme caution. MS is not a joke. I would add all sorts of expletives to drive home my point, but I subscribe to the philosophy espoused by Dr. Jelinek that we are not aiming to conquer our disease. We need to care for our bodies.
Ultimately, MS scares the s#!+ out of me, but the evidence fills me with a tidal wave of power. Here, I return to enormous gratitude — for the rash at the corners of my mouth and for the ever-present, ultra-subtle unsteadiness in my walk — that reminds me that MS ain’t going anywhere. I am grateful for the knowledge of what I can eat and do (based on mountains of research) to get rid of the rash at the corners of my mouth; stop the vertigo, numbness, and tingling in my hands and feet; walk more steadily, and so on. And yet more gratitude for the strength to lift really heavy weights in a gym class full of other healthy people, jump rope (even though I can’t run — go figure), and meet my Fitbit goal. In the old days, I hated exercise. Now, I marvel at its instant, positive effect on my body.
The truth is that I can only do my best. My charades to convince you of my glowing health feel like I am dragging a huge bag of wet socks. Your pity devalues all the scientific evidence that I have a right to have hope, and it enlarges the gap between us. So I’ll give you a break if you give me a break. Don’t ask me how my MS is doing, please — I can’t explain it, and it shape-shifts. If you are interested, ask me about the power of nutrition, and *then* I can convince you. Please treat me like any other human being — no pity, no worry. And I will not try to convince you of how great I am doing; I might even admit to you that today is not my best day. I may end up in a wheelchair in the future, and you might get eaten by an alligator. Or vice versa. Let’s just be real and have some fun.
This blog is dedicated to my beloved husband and life partner, who was the first person to disabuse me of the belief that I was powerless with MS, who never lets me pity myself, nor pities me, who always expects the most of me, and who makes me laugh hysterically (the best medicine) when I am crying, angry, or pitying myself. Thank you, Sweetie.