PERSONAL STORY OF MUSCLE GSD
MY STORY OF A CAREER WITH GSD5
I am Sioned Williams and I have a little mantra which I say to myself quite frequently to remind myself that even with McArdle’s, life is still full of possibilities.
Name
Sioned Williams
Country
UK
GSD
McArdle’s (GSD5)
Diagnosed
Age 36
Written
Age 66
Date
05/2020
He or she who does not turn things topsy-turvy,
who does not risk certainty for uncertainty,
to thus follow a dream,
those who do not forego sound advice at least once in their lives,
die slowly.
Music became my solace
My sister once told me “I remember our doctor saying it is very rarely that God only lent children to their parents for a short time”. I was a “normal” child, but I was visiting clinics with unresolved pains, sluggish movements and sickness, and in-between I was a bit of a ‘character’. I was singled out in school for not keeping up in games and drama (where once I was a hobby horse, bobbing up and down, revolving, ending up in tears). I became a creator, but my real solace was music, though walking to a piano lesson left me breathless and in agony. I started playing the harp at eleven and was happy to practise, loving public performance.
It didn’t strike home that there was anything SO different in me until I had trouble keeping up, in my mid teenage years. I thought the odd pains I was getting, everywhere, were simply me not being fit enough, or having poor instrumental technique; so I worked harder than most (plucking one string at a time for about four hours a day).
On my 17th birthday, I got an old van in which to move my harp (dad only had a motorbike). This helped with socialising and summer music courses, though the chassis collapsed when I once took 18 people to a pub!
Starting my career
After successfully navigating music college, I performed with major orchestras, taught, recorded for radio and television. I travelled Europe, driving myself to solo/duo/trio recitals, moving a 47 kilo harp, and all the paraphernalia of a recitalist’s needs. I was on a high – yet I always felt exhausted, cramped in arms, shoulders, hands, legs. But adrenalin (or complete madness!) and a total love affair with performing allowed me to put everything down to being too busy, too manic, too much of a perfectionist.
After a divorce in 1988 I tried to improve fitness, I went to endless doctors, alternative therapists, all to no avail. In 1990 I landed a premier position as Principal Harp in the BBC Symphny Orchestra which required around 12 hours work most days, summer Royal Albert Hall Prom Seasons with live television, worldwide touring, and I was also still a soloist, making CDs, editing, commissioning, teaching. The pressure was huge, and I LOVED it.
With one of my precious harps.
McArdle literature in my travelling display.
Submitting Pen y fan, highest in the Brecon Beacons, on the walking course.
With one of my precious harps.
Scroll through some photos of life with McArdle’s.
1990 – love of my life and a diagnosis
However, there SHOULD have been a blot on the landscape, because 1990 was also a year of traumatic, yet brilliant change in my life. I fell in love with a hunky Iranian and finally discovered I had McArdle’s!!
I had only just signed on the dotted line at the BBC when a new GP insisted I had various blood tests – one of which showed high CK (after they made me run up and down the fire escape in London’s Royal Free Hospital – big mistake!). Following a muscle biopsy at UCLH, I was told “Now you conserve, not use energy”. It stopped me in my tracks... but I decided, after a massive melt-down, that I would rather end my life on stage, than sitting demurely in some other place wondering “what if?”.
Stimulating and exhausting
Life with the orchestra was both stimulating and totally exhausting. I had to find my own way of coping with many situations, and it required a huge effort every day. I spent many years coping and got a disabled parking badge only after about 20 years. But after around 25 years I required more help, and was very scared and shy to ask for it… I booked myself wheelchairs at airports, asked for rooms on lower floors in hotels, went to concert halls early to warm-up, etc. Performing in the arts world at high level is cut-throat at the best of times, and you are constantly on show and compared... if you show any kind of “weakness” your shoes may soon be filled by another.
My orchestral career came to an abrupt end in 2017; dramatically (during a Prom concert) I lost the sight in one eye. Suddenly, no work, no income, and no plans. I had a year of major eye operations, also suffered greatly with hashimotos (an autoimmune disease) and so a huge black hole appeared in my life.
Finally walking with other McArdleites
BUT – I was finally free to go on my first Walking with McArdle’s course! This was a revelation. Meeting others in this friendly and informal way was just what I needed. The “McArdle’s family” and, in particular, Andrew, showed REAL understanding, empathy, positive vibes... and I knew I would be OK.
To now regularly share experiences with McArdle-ites who understand when you say pain, depression, chronic fatigue, brain fog, or whatever else you feel at that moment, is a life-line.
I still maintain a hugely varied career. Having previously mostly shied away from publically speaking of McArdle’s, I now specifically mention it when performing my “Spiral of Adventure and Discovery”; I share the AGSD-UK McArdle’s literature within a pictorial display, and tell people what we go through, in a positive manner.
ANYTHING IS POSSIBLE!
I pray for us to have greater facilities, more specialists, sharing of medical knowledge and appropriate information so we can enable constructive and happy lives. In the future I aim to raise more awareness, and hope, through my playing, to reach out to more people. I am therefore blessed, and for those who are not yet sure if life can be enjoyable – not just endured, I can say that with the wider McArdle’s family, diligence, perseverance, understanding and love, anything is possible!