Paul Gillies: More Rhythm than Stephen Hawking
“ I tend not to think of my MS in stages of deteriorating, but more of being on a journey with obstacles around most corners. It matters not where I am on my journey, but it matters greatly that I enjoy the ride. ”
Paul began to play blues harmonica as a teenager, and continued until his MS progressed to the point that playing became exhausting. No matter how hard he tried to move his fingers, they remained gnarled up into a fist. The paralysis soon spread into his forearm but stopped at his elbow, leaving his bicep and shoulder weak, but still useable. Even the easiest things became difficult. Soon he became unable to hold onto his heavy Green Bullet harp microphone, and reluctantly packed away his harps. Although he missed playing, he resigned himself to the fact that he could never play again, and would have to make do with his musical memories.
However, nearly eight years later, Paul's harp mentor and friend Big Tim Aves gave Paul a small, lightweight Shaker harp microphone that he was able to hold. Paul found that he could play again, though he had to teach himself a modified technique. In January 2008, he formed a band, Wheel Chair Willy and the Whiprounds, with four of his musician friends. In April 2008, the band went into the studio and recorded four songs.
All About Jazz: You have an interesting story, with a particularly poignant human angle. For the last 20 years, you have experienced a degenerative condition. What were the first symptoms you experienced, and how and when did you first suspect that you had a developing illness?
Paul Gillies: The first indication I had that something was wrong was a blurring of my vision that seemed to worsen if I got tired or hot. After a few weeks of tests without a diagnosis, it was obvious that something serious was causing my symptoms. To be honest, when I received the results back it was quite a relief that it was only MS and not some uncontrollable cancer.
AAJ: What was your wife's initial reaction to this news?
PG: I decided not to tell Carol about the probable seriousness of my condition until the diagnosis was confirmed. Then we sat and talked and cried and talked some more. I think that, like me, she was relieved it was nothing worse.
AAJ: How old were you at the time?
PG: I was 23 and newly married.
AAJ: What was your life like prior to being diagnosed with MS? How were you employed?
PG: My life before MS seems so long ago now. I can see now that, like most other healthy people, I went happily alongletting life drift by and not really appreciating the important things. I had just finished six years of engineering college and was newly qualified as a toolmaker.
AAJ: At what stage did you become wheelchair bound?
PG: As the months and years slipped by, I started using first one stick, then two. Then in 2000, I took the family on a long-planned trip around the world. The only way I could do the Disney thing with the kids was to hire out a manual chair. I then realized that I had so much more energy for the kids and that my quality of life was actually improved by using a chair. I managed to self-propel myself until 2001, when I bought my first electric chair.
AAJ: You have a wheelchair which moves at a fast 8 mphfar faster than the average person moves. Does it make you feel empowered, knowing that you can get there before others?
PG: You need to realize that I'm quite a big guysix feet four inches and 220 pounds. I spent a great deal of time sorting myself out the strongest, most powerful chair that was able to manage hills and rough terrain. As I was spending such a great deal of money on a chair, it had to be right. The speed is less important than the actual rangeI can do almost 30 miles between charges. The chair also raises me up to six feet, which is really handy when you are stuck at the back of the crowd at a gig!
AAJ: Without wishing to paint too stark a picture, you have exhausted 99% of your treatment options. What did these treatments include? Are you limited to treatment options in the UK?
PG: Back in 1984, the diagnosis and treatment of MS were very primitive. I was told on diagnosis that I would probably get worse, that there were no treatments available and that I should just go away and be positivenot an easy thing under the circumstances! In 1985, I lost my sight and began learning Braille. It was only a chance meeting with a visiting doctor from the London hospital that saved my sight. He immediately arranged an intravenous infusion of methylprednisilone, and sight was returned to my left eye. I used this treatment for eight or nine years, until the side effects began outweighing the benefits.