My MS story spans my entire lifetime. It has been an often very dark journey, but not as often as it has been sunlit.
I was born with a condition called Multiple (because one thing doesn’t fit me, I need multiples of multiples) Epiphyseal Dysplasia which caused Arthritis in particularly my hips. The frustration of going through a childhood in debilitating pain taught me that I am alone in my suffering. I was diagnosed with that at 14, late enough in my life that I was far different than the person I might have been. It took until I was in my late 20s or very early 30s to have one of my hips replaced – by which time the cartilage in my hip had snapped and folded in half.
That experience of medical issues helped to prepare me for MS. However, I wasn’t done yet getting made ready.
Between 14 and 30 I started a family and a career. We had three children, all girls, together and got married. Unfortunately my wife was very sick indeed and we lost her to suicide. She was a good, loving mother and we all loved her very much. Six months after she passed, I finally got my hip replacement. I couldn’t walk well at all and the surgeon said it was reasonable in my instance, as a solo dad with a career to think of.
I fell into quite a funk after that, and I gained a lot of weight. I had to get a blood test one day (6 or 8 months after my hip replacement) and a nurse phoned me and said I was pre-diabetic. She said I should think about how much sugar I was eating. This was another and one of the final lessons – I learned I have some control over my own health. So I joined myself a gym and hired ‘one of them Personal Trainers’.
The gym was going really well. I was losing weight and felt fit and strong (even back then); all was going well except for this tingling in my fingers. I had a very active Relapsing Remitting MS it transpired. My diagnosis took two years and they were again some of the darkest and brightest years of my life thus far. I lost my balance to the point I fell over doing pushups. But I had learned two of the three main lessons I would need to see me through:
• I was and am all alone in my battle. All alone. I will speak to this further.
• I have the power to take control and look after my own health.
So when my trainer suggested we take a break I knew how I needed to respond. I refused to quit, despite my embarrassingly poor balance and (oh, yeah…) being very nearly blind. I said no way, I’m not done. So we kept on, and I learned how resourceful and strong I can be.
I was diagnosed after two very rough years. The Neurologist I saw initially thought I had NMO, a very drastic and fatal condition. MS was a relief.
I lost 40kg and got myself as fit as I could, which gave me a chance and an idea when my career in management in the fast paced and often very stressful transport industry became just too much. I re-trained as a Personal Trainer at Otago Polytechnic.
Life with Neurology post diagnosis and my two years at Polytech taught me the most important lesson of all – we are alone in this struggle. We truly are. But we are all alone in it together. All of us are on this journey, from our children to our work colleagues. But there is strength in numbers. People genuinely care. And it’s okay to let them try to ease your difficulty. From my then six-year-old daughter who would trim my beard when I was too blind, to MSNZ who graciously approved funding in the form of the Dorothy L Newman Scholarship to help pay my fees – we are all family. My family unit has had to become very close knit.
Since MSNZ came into it I have seen a side of life that I had not really experienced – kindness from others outside my immediate family. The scholarship I received certainly helped financially and made learning way more easy on the mind. But the chief benefit for me was the love and care shown to me. So when MSNZ put an advert to apply to go to Outward Bound I had the confidence to try. I am wearing the Outward Bound top I bought at the end of that experience. It is woven with fine cotton and silky memories.
Thanks for showing me those things MSNZ, MS needs community and you help create that.
Thanks to all these experiences post diagnosis, I am a trainer, and I have exactly the attitude to life I need to thrive despite MS. I try my best to accept that I might find my way to a wheelchair. So I played my first game of wheelchair basketball. I want to experience as much as I can now before it does happen if it will. I surf in the ocean (on a bodyboard laying down).
But mostly I want to live in service to others. I am wondering if there is any interest in online exercise classes. I can only help local people in the gym. I do run classes there, but my motto has become “if you want to train with me and take some control over your life you should be able to”. I want anyone to talk with me that would like to look at working out, no matter their current circumstances, or location. The community in an exercise class can be so lovely to be part of.
If I were to offer any advice to someone newly diagnosed I would say take control of your own health. Help your medical specialists help you. And
NEVER GIVE AWAY YOUR HOPE.