Thanks to my internet pal MS Nomad, I just learned that March is Multiple Sclerosis Awareness Month. A little while back she also posted a link I shared on my blog’s facebook page to an article/video by Dr. Gregor about treating multiple sclerosis with diet. He gives an overview of Dr. Swank’s pioneering work, stressing how those diagnosed with MS who follow a diet very low in saturated fat can expect to live to a ripe old age.
The most impressive results from Dr. Swank’s 50 year study spotlight those who started the diet when newly diagnosed. Indeed, this is also what all plant-based doctors who advocate using diet to manage or overcome Multiple Sclerosis emphasize. But what if, like me, someone comes to this diet years after diagnosis?
A lot of times people who cheer me on await the day when all my symptoms will be completely gone and my condition will be a thing of the past. Alongside the white house with the picket fence and the two kids, it’s a kind of American dream. And those of us who eat plant-based feed ourselves not only on fruits, vegetables, grains and beans, but on the stories of those who reversed their serious conditions completely. That’s what makes films like Forks Over Knives and the stories of Star McDougallers and Herbie of the Week so compelling. Each of us could be the next one.
But what if we don’t make the grade? What if we get better but not all the way better? What if some things remain serious issues, or something else crops up that we didn’t expect? Perhaps there’s a better way to see eating low fat, whole food and plant-based than as a cure-all that takes away all of our serious health conditions.
There’s one sentence in the article/video about MS and diet which addresses that circumstance: ” Even patients with initially advanced disease showed significant benefit.”
This is definitely the category I fall into. While I have always been a much healthier eater than most people, I didn’t find the low fat vegan approach until 12 years after I’d been diagnosed. So in honor of Multiple Sclerosis Awareness Month, I’d like to spend some time today reflecting on what “significant benefit” has meant to me, and why it’s more than enough.
The year and a half or so before I adopted a low fat whole food plant-based diet my mother died of lung cancer and I flew with my son from Spokane to California. By the time we arrived at the airport in Spokane with friends who had driven us there, it became apparent I needed a wheel chair to continue traveling. Once we got to California I spent most of the public appearances at the funeral and after in my Mom’s wheel chair. Once I got home I spent much of the time for weeks resting in bed so I could get strong enough to walk the third of a mile to the co-op. First around the block. Then half way. Then all the way. By September I was making it there again.
Around that same time, some young friends of mine escaped a fire that burned the old farm house they were renting to the ground. They had no place to go, and for months they lived with me. It was a loving time, but it was also full. They had two dogs and a 2 year old who was the apple of my eye. Once they were able to organize themselves to go east with plans for the mother to attend law school, I was tired out from all the stimulation, but also had become used to the family help and support I had received whenever I had needed to rest because of the stimulation.
I drastically underestimated the time it would take to bounce back. I figured a few weeks: it took months. I still remember the spot a few houses down the street near an old lilac hedge where I became so weak and exhausted I knew there was no way I’d make it around the block, let alone to the Co-op. I prayed I’d just make it back to the house.
For five months I could not walk to the co-op myself, let alone carry anything home. Other people had to shop for me, because most of the time I was too tired to even go if I got a ride. When I did feel up to a ride over, I remember not being able to look over at the deli area (where my art show currently hangs) while checking out, because it was where I had sat so many times having good conversations after I had walked over to meet someone. I was too afraid I would burst out in tears just at the sight of it. When I finally did make it over on my own and sat in the deli area waiting for a friend who was going to meet me to help me shop, I did cry to be able to see the store from that perspective again, in spite of how long it had been since I’d made it there to sit down and gather strength to shop, with or without help.
I also remember one of my first round trips on foot during that time. I was so thrilled I had made it all the way and would make it all the way back, that I bought a single sesame candy out of the bulk section, something I could carry in my pocket, just to say I was able to carry something home.
Eight years later, I still get tired. But it’s after I have walked a mile or more with Romeo, then ended up at the co-op, and shopped to fill my backpack to the gills. Although all the checkers know to help me on with the back pack, it hardly occurs to me anymore to sit down and rest before heading home. In fact I had forgotten all about the places I’d done that until I started to write this post. At one point there was a sort of easy chair in the dead center of the store in the health and beauty section, where people could sit and read material about products. Years ago it was my first destination when I entered the store. I’d sit there and let my heart rate calm, and wait for any dizziness or jello-y feelings in my legs to abate enough to go get a cart and push it around. Now when I’m tired, it doesn’t come with these more obvious warning signs, but I still have to pay attention to it.
A very recent experience with that need put it all into perspective for me. The night after my art opening, there was a reception at our independent bookseller for poet Robert Wrigley, who received the Pacific Northwest Independent Booksellers Award for his latest collection of poems, The Anatomy of Melancholy. He is an internationally renowned poet and all around great guy. We are lucky he calls this area home. Since I really like Bob just on general principal, and The Anatomy of Melancholy is my favorite yet of all his books, I wanted to go and help celebrate, even though I was still pretty tuckered out from my own art opening the night before.
As I walked down to the bookstore with Romeo, I thought to myself that as soon as we got inside, I’d go to the back and nab a chair on an aisle in the small reading area so Romeo would have enough room to stretch out. I knew it was going to be a short reading, but it turned out it was going to be a REALLY short reading–just a few poems–and then lots of book signing and hobnobbing. At first there was a general air of confusion about that in the back of the long narrow store as people went to the back and saw the chairs weren’t set up.
Nevertheless, after the art opening and two walks that day, I knew I didn’t have it in my legs to stand on the mostly cement floor for the next half hour or more. Luckily for me, I spied an empty bean bag chair in the children’s section and sat down. After several minutes of making sure I was staying there for a while, Romeo quietly crept up onto it next to me, and settled in for a nap.
As the proprietor of the store passed by me, I asked her about the chairs. It turned out I was in the perfect spot. Bob would be reading from the lectern set up right across from the counter, and even if some people stood in front of me I’d have a good enough view. And I’d hear fine, which is really the point of listening to poetry.
Comfy in the bean chair with my legs able to take a break, I was content to watch the people milling around us. As more people gathered, an attractive woman came forward with her hand outstretched. “Do you remember me?” she said, and when I looked in her bright and pretty face I did. It was Darci, the physical therapist who I had seen and worked with the first year of my diagnosis back in 1996.
We hugged. And she said, wow, you look great, you’re glowing. (Even sitting in the bean bag chair I guess.) So I told her about my art show. We visited a little and after the award ceremony and reading, we took up our conversation again. She asked me what I was doing to keep myself in such good shape. So I told her about my way of eating. She whipped out her iphone and wrote down the URL for this blog, which of course made me happy.
But something else in our conversation also stayed with me in the best kind of way. It has been 18 years since I worked with Darci. But she said that even then, I was very positive, that I didn’t come to her saying “I can’t do this” or “I can’t do that.” She said she remembered me coming in and showing her what I could do and asking for help with ways to keep doing it or make some other things easier to keep doing. “You were so positive,” she said.
So even then, as I was adjusting to the cause of my difficulties, and starting on a more limited diet as well, I was focusing on what I could do and what I could eat. I had gone to a homeopathic physician who had determined my allergy to wheat starch, egg whites, and a few other food sensitivities. But my guiding question to myself was “what can I eat?” not “why can’t I eat that anymore?”
So I guess that’s what you get the most of on this blog. The things I can do now that I couldn’t do before I started eating this way, and the wonderful things I can eat that keep the significant benefits coming.
Significant benefit means softening of symptoms and easier alleviation of others. It means renewed ability to bounce back, and in a much shorter time period. It means problems recede, become more subtle, resolve more easily, are less acute, less frequent. But that doesn’t mean I don’t have to pay attention when symptoms present just because they aren’t holding me hostage in the same acute way they once did, or I can now forget such things ever happened or that I’ve been given the diagnosis of MS.
I know most people who have serious or chronic illness wish for it to be all gone. Once in a while I feel the same way. But perhaps having been born with mild cerebral palsy sets me apart from people who believe in themselves as “normal.”
I’ve never had that belief. From the time I was small I knew that I was “different.” Being “different, for me, was “normal.” So those 2 notions have always had contradictory or paradoxical meanings in my life, and in some ironic way have freed me from a view of normal that can actually be oppressive.
I believe eating whole plant foods is the absolute best thing I can do to either prevent, soften or ameliorate just about anything coming down the pike to me from my family history. And that history has a doozy of a list of things I might have to live with–or die from. Cancer, heart disease, diabetes, high blood pressure. . .so just in case those things come along to join the MS, the CP and fibromyalgia, I might as well be armed with a non-toxic approach to lifestyle that’s going to promote healing from all of them.
It’s also important to me that I make sure I spend time doing the things I want to do that I haven’t done enough of, and not too much time doing the things I don’t really want to do that I’ve already done a lot of. In the first year after my diagnosis I listed these two categories in a journal, and ever since I have tried to guide myself by them, and learn to listen to and trust the inner promptings that place one thing or another in either category. It’s served me very well, and helped me find my way back to doing my art more consistently and openly.
I believe eating whole plants gives me increased mental and emotional clarity that helps me to live by these insights. In the six years of experience I’ve had with it so far, this kind of slow motion miracle healing doesn’t move in a straight line. Instead it’s like walking a labyrinth. Progress is circular, or cyclical, or both, filled with curves and twists on the way to each new center. Sometimes I wonder where I’m going. But the center of calm, new balance always awaits, even if I can’t see how I’ll get there. One winter many years ago I walked an indoor labyrinth with my walking stick, laid out on a church floor. The closer “in” I wound my way, the more convinced I became I might have chosen the wrong path and would find myself flung out on the perimeter to try again. Just as I was about to give in to the panic of this belief, I saw I was but one turn away from the center. There would be no going back.
Except that of course there is the going back. After sitting in the center with the insight that I often despair right before a breakthrough, it was time to follow the maze of the labyrinth back out again, to integrate the insight and healing a circular journey to the center provides, to find a way to live with it in the world. Out of the corner of my eye, I watched my reflection in the glass walls of the church wind its way close, then seemingly farther away, then even closer to itself. The “wrong way” was only an illusion.
Sticking with my slow miracle of eating whole plants mimics the wholeness of the labyrinth’s path. There are cycles. There are twists and turns. Over and over it returns me to myself and facilitates “significant benefit” on all levels and compassionate interconnectedness to all of life.
We are all works in progress. So I don’t mind being a late bloomer or a late starter, or someone whose disease had already “advanced.” The “significant benefit” may be in slow motion, or partial, but it’s also steady. And perpetual. Given this miracle, I’m hard pressed to say living the rest of my life in a state of perpetually dynamic significant benefit is a “lesser” gift. Instead, I see it as living an open-ended best case scenario.