I would like to talk briefly about my life with Huntington's and some reflections I've had on that. Like most of us here the Huntington's gene is in my family. It came in through my grandfather, he died in 1998 and now its effect is spread throughout my extended family.
I had a positive test for the gene four years ago and I live in the minefield of the unknown many of us live in. I have experienced the depth of suffering which Huntington's brings into our lives and I struggle daily with the ups and downs, and the existential abyss into which we are thrown.
Along with this I have been a practicing Buddhist for 8 years, and I am an ordained member of the Western Buddhist Order. Just to confuse you I have two names; some people know me as Julian and others know me as Nissoka, which is my Buddhist name. I will answer to either of them. I thought I'd clarify that. In case there's anybody who thought that there were two people talking at the same time today!
Something I'm exploring is: how I live positively Huntington's in the family and also in me. Having Huntington's has led me to search in my heart for a response, bigger and deeper than the suffering the illness brings. I am continually confronted with the illness on a daily basis and am challenged to grow and become a bigger person in the face of it Some days I'm up to it, others I find it difficult.
When Huntington's first took a hold in my family, it was easy to have a feeling of a sense of loss, as if something had been taken away from me. This feeling was for me as I'm sure for a lot of you, very overwhelming at first.
It swept me away, and at times I've felt frightened and scared at its potential to destroy my future. My dreams, my plans, my ambitions and my hopes were blowing in the winds. All I had expected from life was in question.
I had imagined myself getting older - no big plans - but just getting older, having a long and healthy life, doing good, enjoyable things long into my retirement. That would probably have been my rough plan if I'd thought about it. Whatever my plans were I had some projection of myself with a particular future.
Of course this has changed now, this 'may' or 'may not' happen - (that's the dilemma with Huntington's, it is only a potential, but a potential that we have to live with). It felt at times as if I was grieving for my lost future, because nowhere in my imagined future was the prospect of Huntington's.
And when it arrived it turned my world around. At first it turned it into confusion, then from this loss of my old world, and expectations, came something new. "When Huntington's first took a hold in my family, it was easy to have a feeling of a sense of loss, as if something had been taken away from me."
It forced me into a kind of mid - life crisis (at 25). I was forced to seriously consider: 'If I only have maybe 10 good years to live, what do I want to do with my life? What is most important to me? And more to the point what things don't I want to do?' (I must admit I've never had the burning ambition to watch all the episodes of Coronation Street).
In the face of my uncertain future I was thrown back upon what really mattered. For me personally it led to wanting to write more, to stop working and spend time alone writing poems, writing about my life, writing characters in a novel, all sorts of things. Also I wanted to spend more time in India before I die, and spend more time with my family.
I was forced to ask some pretty radical questions about who I was and what I wanted. And I started to get the urgency
that I wanted to do it now! It stimulated me
to do now all the things I would normally
put off in life thinking
'Oh I'll do it later!' Or 'I've got plenty of time1. But maybe I haven't got plenty of time, and there are things that I want to do! And I want to do them now!
Everyone is different of course, and everyone has their own passion or deep desires. But I think we all face the same crisis. I don't think we can just carry on with our lives as they were before, Something big has entered our lives and it's going to change us.
Whether we're at risk, a carer or a family-member. We are going to have to re-evaluate our lives and come to fresh conclusions. Even if we end up in the same place as before, we will have arrived there from a different angle, as deeper people, changed by a new outlook on life We will have a new vision of who we are.
For me this process has not been smooth.
I have had to let go of things I had planned
for and let go of people I loved. But in my letting go I have felt the possibility of becoming someone new. That's one thing
I noticed when I started spending time with people around the Huntington's scene, was how wonderful people are, how courageous, how alive. Maybe! I wondered, even more alive than most other people. There is a spark of vitality and an empathy that we all share.
And I've met plenty of people doing what
was important for them. Whether visiting families, going on holiday, doing something they've been dreaming of for ages, going dancing, or spending a decade caring for a loved one. Whatever has been important to them at that time, they've responded to the situation and grown into it.
The same was true for myself. Yes! at first it felt overwhelming. Yes! at first I felt I was just losing everything, but from that I felt I could grow. The danger for me was not getting caught up in depression, self-pity, denial, and resentment. And feeling helpless, angry and frustrated. This of course is only natural at times given the circumstances. I still feel all these things from time to time, but more and more I don't get stuck in these feelings.
The challenge of Huntington's has galvanised my life. History has shown that people in adverse situations can achieve tremendous things. Victor Frankle for example was a Jewish prisoner of war in a concentration camp. I am told he wrote one of the best books on how we LIVE and how we make meaning in our lives.
It is by great pressure, that we are pushed to be our most creative. So I am trying not to worry about how I will die, but how I will LIVE. What do I want to do with my life?
Everyone has to face these questions at some point, not just people with Huntington's; everyone is faced with suffering and death. Huntington's just bought me this challenge and dumped it on my lap.
"The challenge of Huntington's
has galvanised my life."
It forced me to consider these things now, and to get on with it. And this I find inspiring and stimulating. I am aware of my own mortality and that inspires me to be a deeper person And If I lose sight of this, then I am asleep on my feet; I live but I am not truly alive. Alive to what is essential and meaningful.
Sometimes I think of life as a piece of writing. If someone said to me: "Say it in 5,000 words, "then I'd take 5,000 words to say something. If they said: "Say it in 500," I'd say it in 500. if they said I had 10 lines, I'd write a poem. And I can say just as much if not more in a poem as in 5,000 words
My life is like that; I don't feel that if my life is short that I will have had something taken away from me. Maybe even this acute aware-ness of the challenges there are and my own mortality, has added something of the real flavour of life's full picture and this includes suffering and death.
Life to me is not so much of a right any more. I don't feel I am owed long life or health. I don't feel like I've had anything taken away from me. I just realise that it never belonged to me in the first place. And any day that comes is a gift and I have to make the most of it. Life, is a poem and I want to make it a beautiful one.
One question I am forced constantly to ask all of the time is: 'how much of an effect can I have?' I am suffering in many different ways.
There have been times when I have despaired and realised that I can't do anything about
the illness. I've tried to ignore it, change it, deny it, and hate it, and I have felt helpless. And yes in some respects I am helpless. There are things that I cannot change. Maybe there will be a cure but for the time being there is nothing can do about the illness itself. I am powerless to it; I have to surrender to it.
I have struggled with this fact and thought: what things can I do? And what can't I change? And what I did realise was that I could not get rid of the illness, but I could change my response to it!
It looked as if the suffering was both direct and indirect. Direct suffering is the physical, emotional and physiological deterioration arrising from the illness itself. It is the HD that we all recognise. indirect suffering is my 'response to that initial suffering'.
'It's not personal, its not out to get me.
It's just life"
These are two different aspects of what I was experiencing, and they don't automatically
go from one to the other. I don't have to experience fear, anger, frustration, depression etc. These are not symptoms of Huntington's these are my responses to it.
The main difference between direct suffering and indirect suffering is that the first is something that happens to me, the second is my response to it. E.g. if I am standing in a busy shop and someone stands on my foot, the pain that I experience has come from an outside source. It was not my fault, yet I feel the pain, life it seems, is full of that. If I then get angry and spend half an hour ranting and raving, pushing others out of the way, building up resentment and irritation, then this reaction is my responsibility. And it is
this that I can change!
Huntington's happens to us, it comes into our lives on its terms. It is something that causes us pain. But I don't have to get annoyed with it. I don't have to get depressed with it. I don't have to get frustrated with it. It's not personal, it's not out to get me. It's just life.
So it gives me great happiness to know that I can change my response, I do have the initiative! I can feel the pain the illness brings but I can choose to respond with love, kindness, generosity, more creativity, more flexibility, more openness, more selflessness.
I met some really great people here last year; genuine, kind, altruistic, open, loving. This is
a superb response to have. I would like to rejoice in everyone who's becoming 'bigger' in this way. That world of quiet heroes, developing love in the face of suffering, patience in response to the unknown, kindness
in the face of adversity.
Perhaps, contrary to expectation, the illness has given us the chance to become people
we never would have been - the opportunity to develop the qualities of a carer, or the patience of someone facing life's most difficult challenge. As our hearts grow we become bigger people, the more it demands of us the bigger we have to become.
Every time we become bigger, clearer, more creative and more emotionally positive, we dispel that which brings us fear. We do challenge theunchallengeable. We are becoming much, much more than this illness that causes so much pain.
Some other questions that I am exploring are:
- How can I work with the difficult emotions that arise on a daily basis?
- What makes the difference in us, to turn a crisis into an opportunity?
- And what supports do we need to do this?
I would like to carry on exploring more of what I've addressed today with as many people as possible in workshop type situations, on family days or by visiting other groups or meeting people individually.
So if anyone would like to invite me along to his or her group or workshop please contact me: