The first year after being diagnosed with MSA I tried to avoid reading about the disease. The symptoms I could expect in the future were too dreadful to deal with and I needed time to do that.
After the first year I slowly, tentatively made contact with other patients and got involved in awareness campaigns. This mostly had a positive effect on me. Seeing these patients and their families cope with the many and varied symptoms of MSA gave me hope that we would be able to do the same.
I now have contact with many patients who are at a more advanced stage than me. In the ‘closed group’ discussions on facebook I get tips which will come in handy when I have speech and swallow problems etcetera in the future. I also get to see and hear about the worst side of the disease; bladder and bowel incontinence, severe breathing problems and death. Death, I’ve learnt, can happen anything from 1 to 12 years after diagnosis. There is no common pattern of degeneration; unlike me, some patients can still walk, but unlike many of them, I can still talk.
It is easy to lose oneself in the quagmire of all these symptoms and become depressed. The fear of losing my dignity in the future sometimes overwhelmed me, but now that I need help with functions like getting dressed etcetera, and have to deal with the loss of privacy, I realise that dignity isn't necessarily what I thought it to be.
I have to aspire to a new kind of dignity; a spiritual dignity that transcends physical dignity. As I slowly take leave of my once graceful body, I hope and pray to acquire an everlasting spiritual gracefulness.
A rose after the petals have dropped - Laurette's Photography
As the petals of the rose are dropping to bare the last remains of the flower, the rose hip, I’ve come realise the importance of the fruitfulness of this inner core for the survival and continuance of the plant as a whole.
But the Holy Spirit produces this kind of fruit in our lives: love, joy, peace, patience, kindness, goodness, faithfulness