Life with a chronic condition such as multiple sclerosis (MS) is often described as a journey. Such terminology is particularly fitting for Richard Boughton, who left North America for the first time in 2010 when he traveled to Bali, Indonesia, three years after being diagnosed with MS. He has lived there ever since, scribing about his and his wife’s life on the volcanic island on his blog Everyone Here is Jim Dandy. Richard has been kind enough to share his story with us, from his diagnosis a decade ago, to his recent experiences and travels in Southeast Asia.
A guest post by Richard Boughton
In the spring of 2006, I became a newlywed – not for the first time in my life, but a newlywed, nonetheless. I had gotten out of a long, unhappy marriage, had spent a few years on my own, and then I met a beautiful, lively young woman, with whom I was almost instantly ready to spend the rest of my life. She was significantly younger than I – a reasonable cause for caution – and she was also originally from a faraway part of the world called Indonesia, about which I knew nothing (although she had already resided 10 years in America and spoke English fluently). Coincidentally, we discovered that we went to the same church, enjoyed the same nightclub, and frequented the same Starbucks. It seemed like kismet, right? I was healthy, I was energetic, felt sharp and able, and I was ready to begin a whole new life.
A year later, I was diagnosed with multiple sclerosis.
There was no obvious run-up to this, no clear hints or warnings. I simply woke up one morning unable to feel my right foot. By the time I got out of bed and moved around a bit, my left foot had gone numb as well, and the numbness had soon climbed up both legs and into my crotch.
Within days, it was determined, through examination, MRI and lumbar puncture, that I had multiple sclerosis. No doubt about it. My MRI was “classic,” they said. I can think of better things to be classic at; nonetheless, I had produced an MRI that was classic for a specific disease process. Well done.
I was vaguely aware of the disease by name, but I had little idea of what was involved, or what it would mean to me personally. I was much better acquainted with cancer, having seen my brother, my father, and my mother die of that illness. Always the odd one out, I guess. I couldn’t just get cancer, but had to get something outside the family tradition.
In the weeks and months that followed, the numbness retreated from my legs, yet set up permanent camp in my feet. I developed symptoms of profound fatigue, issues with stamina and balance, and most problematic of all, an inability to think straight or perform reliably on a consistent basis where mentation is concerned. This was more than personally bothersome. It was a threat to the continuation of the career in which I had been employed for nearly twenty years, as a patient information specialist in a major medical center. It was a job that required mental sharpness and speed, an aptitude for detail, and a ready memory. And yet, sitting down at my desk one morning, I found that I had quite forgotten my own username and password. Yes, the very ones I had used for the past 20 years! I had been aware that I was gradually slipping, that it was taking me longer, that I was having to search – but this was more than a slip. This was an epic failure! How was I to continue in a job that demanded not only a high degree of personal competence, but involved as well a distinct responsibility to so many patients?
Well, I started out with the normally prescribed measures for newly diagnosed MS. I was put on a regimen of interferon injections (Avonex) and dispensed a number of medications for numbness, for fatigue, for tingling sensation, for reduction of inflammation, and, best of all, Vicodin for pain. Suddenly, I was the proud administrator of my own personal pharmacy.
The problem is, none of these medications helped very much, and the main course among them – the Avonex – was downright deadly. They told me that the noxious effects would diminish over time – the nighttime fevers and chills, the aches, the nausea, all the flu-like symptoms. And so I waited, and was patient. And over a year or so, the side effects did not diminish, and, finally, I experienced the next closest thing to a seizure while lying in a warm bath.
So much for Avonex.
Next, they put me on Copaxone. I did not want to take this, or any other injected therapy at this point, but I was told by my doctor that he would have to “fire me” if I did not.
Copaxone did not cause flu-like symptoms. It caused, before long, a kidney stone. No one warned me of this possibility. I had to discover it for myself by reading the literature. For those who have not suffered a kidney stone, I can say in a brief manner, that they are basically worse than death. And certainly, to my mind at that time, worse than multiple sclerosis.
Therefore, I quit Copaxone, was fired by my doctor, found another doctor, and my life with multiple sclerosis marched on.
During this same period of time, my new wife had not responded well, either, to my disease. This may sound strange at first to the people who are actually suffering the disease. Like, How dare you claim that the disease I have to suffer is a burden to you?! Are you kidding me? But here’s the thing – others do suffer because of this disease, because of what has happened to you, because of what has been taken from them. My wife set out to marry a certain man, full of life and energy, youthful enthusiasm, an adventurous spirit, and ended up with someone else – tired, confused, uncertain, unwell. In short, I was not the man she had married. The unfairness of the thing that has been inflicted on you has been inflicted on others as well, especially on loved ones who had hoped for so much, dreamed so much, anticipated so much.
I cannot help but remember how it was with my own mother, for whom I provided care during the few years of cancer and Alzheimer’s that led to her death. Though I loved her deeply, though I took care of her every need, from medication to diaper changes, I could not help but occasionally succumb to a feeling of anger, popping up, however unwanted, at a moment’s notice. How could you possibly not know me? Your own son. I’ve been with you for nearly 50 years! How is it that you don’t know my name? How is it that you believe I’m just a caregiver in this home? It’s me, Mom. It’s Richard. Please come back. Please just try.
One does not like to disappoint others. A man, especially, does not like to disappoint his wife. Yet, in our own bitterness, immersed in our own accidental fate, we must acknowledge the bitterness felt by others. We must acknowledge their feelings, whether noble or not. Common people, after all, are rarely noble. Common people succumb to anger, to disappointment, to grief, to depression.
And common people have issues of their own. For it was during this period of time as well that my wife was diagnosed with bipolar disorder, a condition wherein a person may swing from one emotional state to another, unable to find and maintain a balance between extremes. The woman I knew from the outset as positive, eager, fun-loving, caring, was also subject to a darker side, to sadness, depression, anxiety, despair. And there’s nothing like the illness of a loved one to flip that card, to turn that corner, to dim the light of a hopeful future.
From time to time, over the months, we spoke of Indonesia, and of Bali. Although my wife had been born in Jakarta and spent her childhood there, she had moved to the island of Bali as a young woman and worked there for a tourist agency. She had fond memories of Bali and had always wanted to return someday. It was one of her dreams for the future. The more we spoke of the idea, the more real it became, just as surely as MS became more real and her own depression became more pronounced. I began to think, Why not? What’s keeping us here? Isn’t it possible that this is just what she needs now to thrive again, to live anew, to be back among her people, in the midst of her own culture and language? And what about me? If I am looking at a normal progression of MS, if I am looking at eventual disability, why not take the time I have left and do something new and exciting, something exotic and far outside of doctor’s offices and hospital wards?
Fairytales can come true, it can happen to you, if you’re young at heart ….
Were we thinking in a magical way? Did we imagine that we could leave all illness and all disappointment behind simply by packing up and moving to the other side of the world? Possibly so. Deep down, that was probably part of our plan.
But, in any case, it did become our plan. We began to take the steps we would need to take. I retired early, put my savings in a mutual fund. We sold everything we could and, during the final week in America, we moved the rest to the basement of our church – chairs and tables, beds, curtains, an electric keyboard, books and bookcases – to be given to charity.
Before we knew it, we were on a plane to Bali, with one stopover in Tai Pei.
I was newly diagnosed with retirement, just as suddenly as I had been with MS.
Part two of Richard's journey with MS can now be found here: Traveling with MS: My New Life in Bali - Part Two
Take a look at other MS-related posts on the MyTherapy blog: