Most of us of a certain age would have been saddened by the recent death of one of my heroes, Neil Armstrong, the first man to have stepped on the surface of the moon. Heroes are hard to come by these days; they appear to be in short supply. If you were to ask people if they had a hero, someone they admire and respect, they would all give their personal take on the subject; after all we are so very uniquely different.
I think Neil Armstrong was a reluctant hero. He shunned his celebrity status, the limelight, wanting to be separate from the ‘man on the moon syndrome’ and get on with his everyday life. Facing the everyday mundane and challenges that scleroderma brings can help make heroes of us all, albeit reluctant, all fuelled up with nowhere to go. We may on occasions feel blasted into some kind of outer space experience, an orbit unknown to us, a whole series of circumstances, psychological trials and relational challenges.
As s therapist I have met many people who, for whatever reason, want to escape a relationship that causes them pain. Some have tried to escape into mood changing substances, some into new relationships and others into whatever takes their fancy. However most people want to just stop and take a look at their relationships, their behaviour and overcome, gain control and get on with living their lives. In my thinking this determination and tenacity makes them a hero, albeit a reluctant one.
Sometimes we need to hide emotionally, deny or minimise the impact scleroderma is having on ourselves and on our loved one. Seeing someone you love fighting to gain control over their body, feelings, mobility and environment can leave us feeling powerless. Sometimes we escape into work, activity, or nothingness, beyond the gravitational pull, floating into space for a time, anything rather than face the evitable loss, hurt and of course grief that follows on like an ugly sister. We recall past experiences, painless, fun times when we had dream as we wait patiently for that beauty which comes with acceptance, that acceptance of chronic illness and all it brings.
Surviving the impact of scleroderma means developing a psychological coping strategy, a kind of temporary agreement with ourselves that does not deny pain, anger and hurt, neither does it blitz these emotions out onto others. If we’re propitious we’ll maybe find another hero who will listen as we take this unexpected and unusual journey. Hero's after all are made not born, they tackle the problem to release the gifts and gifts can come in the shape of people, people just like you!
When living in Portsmouth in Hampshire, England, I happened to take a walk near my home by the sea; I travelled through an amusement park that was near the beach. There were a number of rides for the general public to enjoy and about 40 feet overhead was this very odd looking roller coaster ride. It's steel rails had clearly seen better days, the iron pillars that held the ride up had been exposed to the sea breezes and were rusty and slightly corroded and in need of some paint. The rails that twisted and turned in the air and held the heavily painted cars were narrow; the steel was shining, glistening in the sun. It was all very romantic, there were lots of attractions and people appeared to be at a premium, those that were there were busy moving from one ride to another, the music was playing and could just be heard.
What caught my attention were people suddenly standing still looking up towards the roller coaster ride. I could see a car stuck on the rails, the passengers were calling out to those below as they wanted to get off, the ride was no longer fun it was scary and unsafe. The small cars began banging into each other as the one in front was unable to move freely around the rails. Some passengers attempted to climb out and get off but being suspended high in the air this wasn’t necessarily a good decision to make in this crisis. The owner of the ride quickly turned the power off and proceeded to get a large ladder and get folk off the ride. Some months later the ride was removed from the amusement park never to be seen again.
Although I am an addiction therapist, counsellor and care giver I often want to get off my spouse’s ride when it isn’t particularly enjoyable, appears unsafe and damaging to my wellbeing. I am after all a social being, I am made for interaction with others within my world, it is only right therefore to expect stimulating and interesting conversation from those in my world and have my needs taken seriously. With my counsellors head on I will ask myself a number of important questions “Do you think you are designed to be managed by your spouse’s emotional states?” “Do you think you may be living a second hand life?”, “Do you think you are receiving emotional hand me downs!” “Do you think you are on an emotional roller coaster ride?”
Being able to able to answer these questions honestly requires me to accept that all this is at times true and my choice. There are times when I am aware that I am taking this emotional roller coaster journey but I don’t necessarily want to jump out of the car, it could prove very painful, rather I want others to understand my needs whilst taking this ride and that they are often different but just as important.
While the person with scleroderma may have the disease to refer to the carer does not. Taking a decision to stay on the ride, although painful and unknown, is done so purely alone on what controls my emotional centre – my heart. Like you it’s a matter of the heart. I am told I have at least 10,000 feelings a day, many of them unknown some more so than others, they control my behaviour, they trigger in me a desire to share and give, and hold back and seek solace, to survive the everyday emotional challenges and have fun when the sun shines. My heart and head working together helps me to choose the ride I take.
It will have its many twist and turns and at times I might be calling for the ladder! However I can be sure of this the journey will reach its conclusion, I shall talk about the ride and share this experience with others. Recently I met with five guys who are also ‘taking their ride’ and one of them commented “I wish I knew how to understand what mood my partner will be in next, I don’t whether its hormones, medical or me!” We had a good laugh at this because we all understood this experience. I kind of think go for all three and you are sure to be okay!