Chapter 23: Living with MS
Is this the real life or is it just fantasy, caught in a landslide, no escape from reality
Queen, Bohemian Rhapsody
The lyric from Queen adequately sums up what having Multiple Sclerosis (MS) is like for me. MS just compounds the feeling of the quote within me. MS is the nightmare you don't wake up from. The Queen lyric also sums up the mad and unjust world humans have created. People die from malnutrition and preventable diseases that would in some cases only cost a few pounds to eradicate. Then there is war and terrorism in which the main casualties are non combatants, i.e. women and children.
The assaults on the animal kingdom which will see many species go extinct. Species like the rhinoceros, tiger and elephant, and why? Because in some countries tiger bone and rhino horn and ivory can be sold and used in the belief that they have some medicinal power. The burgeoning human population which is expected to be around 9 billion by 2050 will add to the already existing pressure on many species. Figure in factors such as global warming, which will see a huge reduction if not complete loss of the Arctic ice cap, then how will species such as the polar bear survive? A few years ago I was sat on a train with a chap who said he was a nuclear scientist and during our discussion he said the problem is we are too clever, I paused and said I don't agree the problem is we are too sexual, we are fucking every other species off the planet. One thing that is beyond dispute is that the human species is the most vicious and ruthless killer this planet has to date seen. If you doubt that I would ask the reader to consider what other animal has developed a weapon of mass destruction and used it, twice in fact, in Japan?
It is all very depressing at least to those who have a sensitive and compassionate disposition. In my opinion, just like an auto immune disease, the human species is heading for extinction. Part of me says good, part of me says sad. Humanity has great potential but so very very often falls short by selling itself and the natural world for money. One of my favourite quotes or is "the love of money is the root of all evil" or as I put it "the love of money, kills faster than death".
Having always thought of myself as being ultra fit, it seems peculiar to be in the grip of a self immobilising condition. MS is an auto immune condition, that is the body attacking itself by eroding the mylin sheath which is the protective sheath surrounding the nerve fibre. The result is messages travelling from the brain down the spinal column get interrupted resulting in a lack of mobility. I find it almost funny that the one thing that is beating me into submission is myself. It is said there are five stages of chronic illness, denial, anger, fear, grief, and acceptance. I have always hung on to to denial and I think it is important to do so otherwise I fear the condition might accelerate even faster than it does.
I was diagnosed with Primary Progressive Multiple Sclerosis in the summer of 1999. For some years before that I had developed problems with my left leg and it was on the advice of a friend that I was referred to a neurologist. Initially I was told it could be either MS, a B12 deficiency, or a developing hereditary spastic condition. Eventually after tests and MRI scans I was told it was 96% probability that it was MS but I could have a lumber plunge. I declined with the comment "so then you might know 98%".
In my experience the other main symptom, as well as reduced mobility, of MS is extreme fatigue. Other symptoms are insomnia and then when you wake up from what sleep you do get, you feel as if there has been little benefit to the body. I have become more reclusive and lost most if not all of my dreams and plans for the future. The heat and humidity has become another problem, another reason not to venture out amongst, "normal people".
When I was diagnosed I was strangely happy to know it was something serious that was causing the problem and that it wasn't a B12 deficiency caused by my vegan diet, I would have hated that inference. However not long after I started attending an MS centre for hyperbaric oxygen therapy and I started seeing other MS suffers, I realised this wasn't funny at all, but a very very serious condition. One day I was sat with a chap called Richard in the oxygen chamber, which is like a diving bell. He was in his thirties. We should have concentrated in breathing the oxygen through the masks but spent as much time talking as only two people who have the same condition can do. I was moaning that I couldn't walk or cycle as far as I once could. When Richard spoke he said "you know what I would like to do? Bend down and smell the flowers". Thinking about what he said has choked me many times over the years
Paradoxically I know I am still very fit and strong. Yet if you were ever to see me struggling to put one foot in front of the other, you would think this statement is preposterous. However having been at the top end of the fitness spectrum, having cycled over 300 miles in a day and walked around 70 miles, I know what it is to be fit and push the limits of the body and I have to do that in every movement I make now, walking and cycling those previous distances was a breeze by comparison.
The condition is insidious in so much it is only when you look back over a few years, it is only then apparent how it has progressed. In 2002 I rode from Lands End - John O'Groats, in 2004 I rode up the steep Gold Hill in Shaftesbury 37 times in three hours to raise money for Naomi House, a hospice for children. Then a year later my cycling days were over when I realised I was becoming a danger to myself and other road users.
"You can't put feeling where there is none".
My father often said this, when my mother mentioned to him that they hadn't seen one of the family for a week or so. I was the only one living at home at this time. I was the youngest of five, three brothers and a sister. There was quite a gap in age, eight years upwards. They were all born in the period 1939 - 1945 and I post war in 1952, I have always felt a different generation to them. My parents were hard working, not that I appreciated that fact at the time, and I can say I didn't do without anything, despite how hard it must have been to make ends meet.
My siblings are the sort of people who wouldn’t deliberately harm anyone, yet I can’t say if they would deliberately help anyone either. I think they see me as a rebel, and I am, a rebel without a pause! To me, they are your average persons, the sort that make up the bulk of human life on this planet. During the court case I can say I never received any practical support from any of them not even an arm around the shoulder. After the verdict not even a visit or phone call. Since I was diagnosed with MS, I haven’t received any practical support from them either but by this time I would have been less surprised had I been visited by Martians, rather than any of them travelling the five hours from Manchester to Dorset to see me. Two years ago in 2011, I visited the cemetery in Manchester where my mother is buried. It was twenty years since her death and I did briefly visit my sister and she insisted on contacting my eldest brother. All I got was a sort of shrug, which is what I expected, when I mentioned the lack of support especially through the trauma of the court case.
When you are accused of an act of bestiality and have a condition as serious as MS, I think you could expect other family members to offer support. When none is given, I think you can believe that they are missing a few essentials, like intelligence and compassion. For that uncaring attitude to develop, I am prepared to accept my share of blame because a situation like that can only have developed over time. I'll admit to have never understood average people, what motivates them to be like everyone else, the eat-breed-consume-die mentality, is that all there is to this life? I have learned that blood is not thicker than water, for there appears no love or respect between us and on the odd occasion when you are asked to nominate next of kin, I put none. If my parents were alive, I'm sure my mother would be upset and my father would be phlegmatic about the situation. I fall somewhat in between the two.
So what else have I learned by the all the experiences I have written about here?
I learned that swimming with Freddy was an absolute privilege and a once in a lifetime occurrence. I learned that being outside a dolphinarium and campaigning was equally, perhaps more, important to me, trying to influence and educate people to the true nature of dolphins and where they naturally belonged.
I have learned that as a campaigner, you have to eventually hand the baton over to others, and say this is what was achieved, now see what you can do. It seems strange to write this fact because I thought I'd die with a banner and a sledge hammer held aloft (well at least a pen!).
For years I racked my brains thinking of a way to defeat the dolphinaria industry, thinking that there was some obvious strategy that I had missed. I have learned that crown court is a tough place with no hiding place, but MS is a far tougher place to be, it has beaten me but not broken me. MS isn't for sissies because I still hold all the ideals that I had about animal liberation and injustices to humans, prior to the condition.