Although it is now almost 3 years since I've been diagnosed (6 Sept 2010), memories of that traumatic time flood back easily to make me relive that devastating period in my life. Not only the patients, but also their families and friends are hit hard when receiving a diagnosis of an incurable, terminal disease.
Like many of you, the day I was diagnosed was the first time we had ever heard of this disease called Multiple System Atrophy (MSA). Back at home we looked it up on Google. I glanced only very briefly at the symptoms listed, and quickly closed the lap top. That was too much information too soon. Some people can take the whole bitter pill in one go, but I was far from ready to face all those symptoms.
My mind was racing with thoughts and questions: Will we be able to cope with this? How fast will all of this happen? Why did this happen to me? Did I do anything wrong? What do I do now? Where do we start? The only prayer I could manage was the desperate cry; "Oh God, please help me!"
The neurologist said we would need all the help we could possibly get and referred us to a psychologist. Faced with the diagnosis of a dread disease that would require drastic changes in our lifestyle, we went through many emotions and all the different stages of grief. This can, and did put strain on relationship. My husband’s patience was tested to its limits during my ‘angry stage’ and he often had to bear brunt of my frustrations. He’s still here supporting me. Bless him!
My emotions roller coasted from sadness, extreme guilt, and fear and uncertainty of what the future held. Grief is a natural response to loss, and I was going to have to face many losses in the future.
On the psychologist recommendation I started writing down my feelings and experiences. With my friend Karin’s help and encouragement I started my first blog post in my mother tongue Afrikaans, ‘Sonja se Griffels’, wondering whoever would want to read my first humble posts. Writing however did help me to see my problems in perspective.
By the time of the final diagnosis I was fortunately past the first stage of denial. This however didn't mean that everybody in my life was past denial. Some took longer to get past denial and others never did. They were consequently unable to deal with me and the disease and were left behind. Perhaps facing my physical frailty reminded them too much that, in the blink on an eye, it could happen to them.
At first I isolated myself from other patients, fearing that those in a more advanced stage would only depress me further. Grieving has no time limit, it’s a very personal experience, and there is no ‘right’ way to do it. It took me the best part of the first year to digest the diagnosis, the changes taking place in my body, and what I would have to face in the future. This is an ongoing process as the disease progresses.
Before all this happened, I was fit and healthy. When the first symptoms presented, I tried to fight it by becoming fitter and living healthier. I bought organic foods from farmer’s markets, distilled our water, and juiced vegetables and fruits. I still believe in, and reap the benefits of a healthy lifestyle, but going to extremes didn't stop the disease from progressing. I therefore concluded that life is best lived balanced.
Many well meaning friends have over the years suggested many therapies and ‘cures’. If I had to try them all out, we’d be bankrupt. I have come up with the following question for such suggestions; has the product/therapy been subjected to double blind clinical tests specifically for MSA? I have yet to receive a positive answer. There are currently dedicated researchers trying to solve the mysteries of MSA, but this is a process that takes time. You’ll have to decide if there is anything out there that seems worthwhile to try.
I found the love and support of my family and friends, and avoiding stress as far as possible, to be the best medicines. The support of my kind, and always available neurologist, who regularly attends conventions on movement diseases, has gone a long way in keeping me satisfied that I'm receiving the best care currently available.
Sometime before the diagnosis the doctor prescribed an anti-depressant, which I still take. Some may not agree with this - I however don’t believe in unnecessary suffering. I also found humour and laughter helpful the ward off the blues.
Attitude can make a huge difference in how we cope with difficult situations. I have adopted Viktor Frankl’s philosophy from his book, ‘Man’s search for Meaning’, as my own;
“Everything can be taken from a man but one thing: the last of human freedoms – to choose one’s attitude in any given set of circumstances, to choose one’s own way.”
This is my life and I had a choice how I could respond to this. I have an incurable disease and it will only get worse, but I wasn't going to spend to rest of my life being miserable as well. I had plenty of people to love and to live for, and I am blessed with their love in return.
It took me the best part of the first year before I tentatively started reaching out to others with the disease. My first step was to register on ‘Patients like Me’, where I searched for others who were more or less at the same stage as me. I found plenty in a far worse state than me. Their plight triggered deep feelings of compassion, and I stopped feeling sorry for my self.
Concerned, I wondered how I could help them. When I first heard projects to create awareness for MSA, I was ready and eager to put my name and face to this disease and join these campaigns. With plenty of help from my supporting friend Karin, we organised our first local awareness event. This added new purpose to my life.
I have since been privileged to make contact and get to know many patients and/or their families from all over the world, as well as a few locally. From them I have not only learned a lot about the disease, but also how to cope with it. We support each other, and they have enriched my life. Now I can not imagine my life without my compassionate MSA buddies.
Being a fiercely independent person before, accepting the help from others was very difficult initially. I have since learnt the valuable lesson that in accepting help you give a gift to the giver. Don’t underestimate the value this can add to the lives of others, and the new depth in friendships/relationships this can lead to. In turn, reaching out to fellow patients in their darkest hours has added value to my life.
Living with an incurable disease has caused my life to take on a new intensity. I love more deeply, have more compassion, value friendships deeply, laugh more joyously, take more joy in music, and appreciate the beauty of nature more. I live in the moment, savouring every beautiful moment. The awareness that my earthy life, like all life, is finite has made it more precious.
One can never be fully prepared for the expected diminished capacities, but I hope my mental and spiritual preparation will soften the impact. Concentrating on what I have left has made what I have lost easier to endure. I now see my physical body as only a part of the real me. This allows me to look at the disease objectively, to accept it, but not succumb to it. Coming to acceptance is an ongoing journey, a destination to aspire to. I now often experience the inner peace that comes with acceptance. At times I cry a little, but it is no longer tears of desperation for I am not without hope.
Dear fellow patient, you are at a cross road in your life now. Your journey will not be the same as mine. It will be unique to you and how you respond to this extreme challenge. The road ahead will be rough. Open your heart to see the beautiful flowers along this road. They will be there.
Blessings for your journey,
Psalm 10:17 - You, Lord, hear the desire of the afflicted; you encourage them, and you listen to their cry