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A Tale of Two Lives, Before and After an MS Diagnosis

OMS Ambassador, Roy, shares his story of life before diagnosis and life since. Living in Auckland, New Zealand, Roy actively ensures that his emotional needs are being met to maintain a positive mental health.

Roy with his wife Julie

I have lived two lives in this lifetime. My first was me before receiving a diagnosis of MS (before MS life), and the second, me after receiving a diagnosis of MS life (after MS life).

Born in South East England in 1947, the trauma of several adverse early childhood experiences imprinted on me deeply. The mental and emotional suffering, pain and torment resulted in me unconsciously creating the early childhood coping mechanism of compulsive self-disregard and emotional repression. It inevitably became the psychological pathology for my ‘before MS life’ that was dominated by the fear of rejection, never being ‘good enough’ and the feeling of shame. 

Fast forward to 1980; I was married with two pre-school children and living in New Zealand. An incident at work triggered memories of a terrifying event from my childhood that was accompanied by intense emotional and physical reactions that caused me to hyperventilate and black out. A few days later I started to experience symptoms of optic neuritis (not diagnosed at the time).

Talking about the experience with the minister of my local church a couple of weeks later, he reflected back to me how I had no adult coping skills. As a consequence he arranged for me to participate in a 4-day residential group therapy programme. It was the first step of my mental and cognitive healing journey, plus my life skills education. 

Seven years later, two major traumatic events impacted on my life - the threat of closure of my place of work, plus the loss of income following the severe damage inflicted on our rental property by the most damaging earthquake New Zealand had experienced since 1968. I started to experience physical problems, weakness and fatigue

Twelve months later I was diagnosed with MS and told there was no treatment or cure. No treatment or cure – what were they telling me? How should I think about that? Luckily, over the previous five years I had overcome my psychological pathology, done the training and made a successful career change from being an engineer to a child and family counsellor. 

After some careful consideration I asked myself the question: “Currently, how much control do I have over the symptoms of MS; and how much do the symptoms of MS have over me”? The answer to the question was: “I had 20% and the symptoms had 80%

Two weeks later a copy of the book “Multiple Sclerosis: A Self-Help Guide to Its Management” arrived in my mailbox from my mother in England. The book was the catalyst for starting my new ‘after MS life’. Having been unable to work for the previous 3 months I immediately set myself the intention of getting back into the workforce.  

Four months later I secured a part-time position as a Co-ordinator. Twenty-one years later I was a finalist in the Senior New Zealander of the Year Award 2011 for my positive contributions to making New Zealand a better place. Two of my major contributions were: “Significantly changing the landscape of caring for people with dementia during the 1990’s”; and, “As co-founder of StarJam, creating the opportunity for thousands of young people with disabilities to transform their lives through creating national and international performance opportunities where they could build their confidence, develop their character, discover new friendships and enjoy the thrill of new hope and new purpose.” 

Building new hope, purpose, confidence and character are words that could also aptly describe some of the benefits provided by the OMS 7-Stage Recovery Program. For me, the greatest benefit the program has provided me with is a practical, holistic structure and a logical sequence within which to live my life by. My first introduction to Professor George Jelinek was through his first book in 2000: “Taking Control of Multiple Sclerosis”. Subsequently, after attending a 5-day OMS Retreat at the Mana Retreat Centre led by Professor Jelinek in New Zealand in 2011, I began starting to treat myself with the same kind of kindness and compassion as I would a best friend.

In my ‘after MS life’ I have learned that, my emotional needs were not being met. I didn’t know how to express myself or say what I needed or wanted. Today, the by-product of ensuring my emotional needs are being met in a balanced way has become my greatest asset in maintaining my positive mental health & well being. It has been the most psychologically beneficial lesson I have learned in my ‘after MS life’; and has allowed me to savour life fully, moment by moment with gratitude and contentment, rather than the mental and emotional anguish, pain and shame of my ‘before MS life’.

Each day my inner voice, whom I have built a relationship of trust with over the past ten years, reminds me with these two intrinsic motivators: 

“You are valuable for whom you are - not what you do” and “You are healed; and you deserve to live a healthy and active life”

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