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Steve Shackel caught drinking dandelion tea - proving that all things really are possible! Steven is now in remission after being diagnosed in 1994.
(ALS) Amyotrophic Lateral Sclerosis or (MND) Motor Neurone Disease are referred to as ALS/MND.
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Steven Shackel Encounters ALS/MND
It took me forty-some years and twenty six days to discover what Motor Neurone Disease (MND) was. MND is what they call ALS (Amyotrophic Lateral Sclerosis) in Australia and the UK. I stopped a passing intern at the hospital where I had been scanned and speared and sliced and diced and psychoanalysed and held innocent and ignorant captive for twenty six days.
As I recall his words, his voice is now a parody of the accent of the Indian sub continent - I don't know precisely where because I never saw him again. He walked into and out of my life and in a scant few sentences left me with the legacy of ALS.
I knew he was talking to me because I looked around and checked on the off chance that there had been some terrible mistake and he was talking to somebody else, insouciantly condemning them to a death too horrible to contemplate. But it was just him and me and these few words:
"What the heck are they looking for, Doctor?"
"Motor Neurone Disease".
Brief silence as he stared at my chart before I asked, "What's that?"
Without looking up he repeated the textbook definition "A neurodegenerative disorder that is usually fatal. It frequently results in death from respiratory failure or related complications around two years after diagnosis".
He was peering out the window and I was now looking into the jaws of death. I think he was watching the pigeons mating on the window ledge. Life goes on.
He snapped the chart shut, raised his eyebrows interrogatively and, taking my stunned silence as confirmation that he had answered all I would possibly ever need to know about ALS, terminated the conversation (an annoying disruption to his routine) and strode away. I could hear him joking with a nurse as he left the ward.
To paraphrase Hemmingway, "Its not the dying but the manner of it." ALS is an ill mannered death if ever there was one. Not that death was a problem (my personal philosophy could cope with that) but of all the illnesses in all the world I had to choose this one. Here, half a world away from Casablanca I had undergone a Kafkaesque metamorphosis from a man with a "bad back" to a condemned prisoner.
Trapped inside my own life with nowhere to run. Think about it. How often do you feel trapped in your own life? That's how I felt that day. How could such a thing be possible? How could my worst nightmare be coming true? What to do? What to do?
That was February 1994. Much has changed. Predictions of my demise were greatly exaggerated. I had a slow, limb onset (possibly atypical) form of ALS. I have since found that many forms of ALS are "possibly atypical".
So many people experience the different ways in which this disease can manifest. Some, like the sharp snap of my hospital chart closing years ago, have lived their nightmare through to the end and are free of it. I stay one step ahead. The cold breath of my personal nightmare, as now in the lonely hours before dawn, chasing me from my bed to write this. But so much has happened in the following years.
There's something strangely (perversely?) liberating about knowing you're going to die. It throws your entire life into sharp relief. There are the truly important things (and surprisingly few of them at that) - then the rest. I could now say and do and be whatever I wanted. What was the worst anybody could do - kill me? Imprison me in my own body, mental acuity fully intact but all other functions out to lunch - permanently? That had been taken care of it seemed.
I lived alone with these thoughts and these emotions and this horror for six weeks until all the test results became available. What could I tell my wife and family and friends until something was confirmed? That was a long six weeks. Einstein could have used it as an example of how relative time operates. Your life is brutally pared down to two years then you wait for six interminable weeks of the short time remaining. ALS is cruel long before it starts to do its worst.
The specialists had no answers. Every one of my questions merely bred more questions. I was plagued with questions, infested and clawing at them night and day. I started by writing letters to doctors, specialists and researchers around the world; anybody likely to provide a balm for the questions tearing at my mind, body and soul. Answers were few, usually brief and, often after months of waiting, incomplete, inconclusive and uninspiring.
The Internet was in its infancy at that time but became the quantum leap that saved my sanity, such as it was by that stage.
Other people had ALS. I was not alone after all. Other people were surviving, some better than others. Some were alive, inspired and inspiring. An astonishing number were incredibly articulate, intelligent - by normal standards "over achievers" (whatever that may be). Now I was afloat in a sea of questions, answers, speculation, hypotheses and - for the first time in such a very long time - hope.
Faced with adversity of the highest order, people from Iceland and Belgium, the Ukraine and the USA, many other countries that had only ever been coloured patches in an atlas - people in all these places were looking into the maw of the same monster and refusing to back down. For some it took the guiding hand of their god, for others it was new age mysticism and still others sought the sharp edge of science to cut through the endless enigma that is ALS. I fell in between the cracks.
I have faith in God but not in the God of most churches. I use scientific process but not the blinkered, plodding, scratching-at-the-surface of accepted dogma that often passes for research, because I was never told the sort of questions I was not supposed to ask. My mind was open but tempered with a healthy dose of pragmatism. I have a vision unclouded by unrealistic expectation.
All of this forms the basis of what ALS has given me. Yin and yang, black and white, positive and negative. Everything taken away creates an opportunity, a space to be filled. Because of ALS I have been able to help others by gathering information, winnowing out the chaff and collating possible answers from the kernels of information remaining.
It is my belief that questions and answers are made of the same essential elements. If the elements exist to allow you to generate a question, the answer must be nearby. Like two ends of a stick - the question is at one end, the answer at the other and in between is the substance that joins the two. Grasp the stick at any point along its length and you hold both question and answer in your hand. The trick is to balance it in such a way that the stick remains stable enough to view both ends without bias or preconception.
This means being open to complementary or alternative medicine but ever wary of quack medicine and claimed "miracle cures". It means following scientific methodology but finding a point at which it becomes unacceptably inhibiting. It is having faith and belief that a cure exists and the pragmatism to understand that the development and application of that cure may be beyond one's personal allotted span.
I used to practice martial arts and even became good at them (believe me, it's nothing like the Hollywood and Hong Kong movies!). Then I took up road cycle racing - easily one of the most torturously difficult and demanding sports in the world. Forget memories of pedalling your bicycle to school. Cycle racing means that you will pedal in groups at 50km/31mph for hours at a time, you climb mountains that strain your muscles and can break your heart and mind. You descend the mountains at speeds in excess of 100km/55mph with only two square inches of rubber in contact with the road.
If you fall, your body with no metal cage or leather padding to protect it slams directly into a concrete and bitumen slab. Thus ended my cycling and sporting career. A huge truck either did not see or did not care that I was using the road too. He drove on and passed through my life as did Halley's comet in that year, 1986.
I spent months in bed and a year in rehabilitation. From that day on I was disabled. Going from fit and very strong to weak and disabled was hard to take. My upper and lower spine was a mess and my brain had been scrambled by repeatedly bouncing it along the concrete highway. After a time I could walk again - but within limits. Pain was intense, constant and a matter of degree and fact 24 hours a day.
Gradually I learned to live with pain, take the medications and adapt. I could no longer work full time because I couldn't sit or stand or lift and carry like I used to. Eventually I could not work at all. After several years, and by now living in near poverty, constant pain and feeling worthless - a non worker, non provider, man of memories of what I used to be and do - along came ALS.
It's a bitter irony that my lifestyle by now had been pre adjusted. Housebound most of the time; friends had long since drifted away merely in the process of carrying on with their lives; wondering daily what I was contributing to the world and where my future might lie. Yes, it was depressing but, for all the horror that is ALS, it was my wake-up call. I had a new goal in life - not to die from ALS.
I've worked towards that goal ever since and have apparently achieved remission through improving my liver function, taking antioxidant and complementary medication and drinking around ten glasses of water daily. My diet modified itself. I try to follow the recommendations of the Glycemic Index diet. My symptoms have diminished (but not disappeared entirely) and I now walk regularly without a stick. I sent my wheelchair back and hope never to need it again.
Spontaneous remission? Divine intervention? The result of years of unstinting research and experimentation? Who can say? But well over a decade since I noticed the first symptoms of ALS/MND I'm still here fighting, for myself and for those who can no longer fight for themselves.
In that way ALS/MND is both my greatest ally and most feared enemy. By stripping me of all hope when I thought that had already occurred in my life, it gave me a renewed purpose. Now I have devoted myself to living and helping others like me to continue to live, if that is at all possible. One day I may succeed.
I cannot gauge the wisdom of my goals and actions for, as the author Frank Rooney said, "A man's wisdom is his personal work of art whose beauty can be seen only from within the man himself".
Steven Shackel. Born London, England September 25th 1951. Resident of Australia for around 40 years. Resident of this world ... for as long as humanly possible.
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