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.
Since then, I have tried various pills and potions with various levels of success, the most successful being betaferon which was self-administered by injection on alternate days. These injections seemed to slow down the progression of my MS, and I endured the worsening side effects for eight years before reluctantly deciding to stop. My progression had been slowed, but I was still deteriorating. I have come away from the hospital now, and I self-manage my MS on a daily basis.
AAJ: Can you define the various stages of this illness? At what stage are you now?
PG: MS is a disease of the central nervous system and it interferes with messages between the brain and other parts of the body, so in other words, various bits of your body stop working. Most people have periods of relapse and remission, whilst, for others like myself, MS has a progressive pattern. I don't need to tell you that this makes life especially unpredictable.
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. This outlook has helped me bring up two wonderful daughters, and I have always had a full and fairly active social life.
AAJ: You have really done things that many people unencumbered by a wheel chair have not done. This would include walking up Mount Vesuvius on crutches, jet power-boating in New Zealand, bungee jumping 300 feet over the River Thames and tandem freefall parachuting from 10,000 feet. That's a remarkable list of credits. Are you pushing yourself to do these things because you refuse to be limited by your illness? Would you have done these things if you didn't have MS?
PG: Good question. I probably wouldn't have considered any of these things, had I been fully fit. I guess I was aware that the clock was ticking down, and so I made a list of things I wanted to experience before the alarm bell rang. It wasn't exactly refusing to be limited by my MSit was more a hunger for life, and gave me the chance to stick a finger up at Mr. MS.
AAJ: As well as these things, your most daring feat is joining four mates and forming a blues band. How did this come about?
PG: I have always loved the blues, and was an unconvincing but enthusiastic harp player in my late teens. I had put the harp down for a few years but the hunger to wail-away behind a band had remained. So it was with great excitement that I added this task to my list and began the process of teaching myself to play properly. I played at a reasonable standard from 1993 until 1999, when my MS worsened and prevented me from being able to hold onto my green bullet mic. Then poor co-ordination and fatigue finally forced me to give it up.
It was in 2007 that my good friend and harp maestro Tim Aves gave me a Shaker mic that fitted snugly into my left fist, and so I taught myself a different technique that allowed me to just about sound OK. The addition of a Fender Bassman pedal gave me back the missing tone, and I was ready to rumble. I put the word out and started tooting away with firstly my good friend Tony. Then a few weeks later, his pal Alan joined us. I was then approached through MySpace by Jason and Stevie Bee asking if I wanted to jam with them. And so it was that Wheelchair Willy and the Whiprounds was born!
AAJ: Introduce the blokes in your band.
PG: The band consists of Jason Silverback on vocals/bass guitar, Tony May on lead/rhythm guitar, Alan Poulter on slide/lead guitar and Stevie Bee on brushes/drums.
AAJ: You made an arrangement with the "horned-one" upon news that your wife was expecting your first. Can you tell us about this? Do you feel this may have helped your music?
PG: Ahhhh I'm guessing this question comes from one of my blogs: "A pact with the devil" from my personal web page.
My daughter Rebecca wasn't planned and neither Carol nor myself wanted any children who might have to experience growing up without a father. Religion has never been my thing, so I guess my bargain with the "horned one" was me reaching out for any kind of assistance. Maybe I was appealing to Mr. MS to show a bit of compassionI'm not surebut here I am 21 years later with two healthy grown up kids and a smug grin on my face. As for it helping my music? Yeah, you could be right. When I'm sitting in with the Whiprounds, pumped full of adrenaline and blowing a storm, I certainly feel I'm giving Mr. MS the finger!
AAJ: Now, on this, it might be a good idea for others to follow your example. What instrument do you play, and what do you do when your playing takes an unexpected turn?
PG: I play blues harmonicamostly Hohner Cross Harps or Special 20's, or occasionally, Lee Oskars. I usually keep a spare harp of the same key in my top pocket should Mr. MS make me throw the harp I'm playing across the room. Also, if I make a shocker of a mistake I try to repeat it, but add a bluesy end to it to make people think it was intentional! On the rare occasions that I drop my mic or get completely lost, I just have to grin, grit my teeth, put my hands up to the guys and carry on. After all, I've got MS! I can't lose, can I?
AAJ: While you certainly deserve a world of credit for being an inspiration to others, who inspires you musically? Why?
PG: I grew up listening to Muddy Waters, and in particular one of his harp players Jerry Portnoy. He still makes the hairs on the back of my neck stand up! Presently, I'm a big fan of Billy Gibson and I have great respect for Adam Gussow (Kudzrunner) who regularly puts his harp tuitions onto YouTube.
My good friend Tim Aves, front-man of the now sadly disbanded Rockin' Armadillos and Automatic Slim, has been a great influence on my harp playing and is a generous, genuine guy who would do anything to help out local musicians. Tim has been through some difficult times health-wise, but has bounced back and is still playing the blues, helping others musically and presenting blues on his local radio show.
AAJ:You and your mates are working toward a goal. Can you tell us what this is, and how your efforts are going?
PG: We all agreed that primarily the band needed to be fun, with no egos or bullshit. We plan to do a few fundraising gigs in November to raise some money towards the 10,000 I need to buy my replacement wheelchair.
We have recorded four songs and built our webpage. At present, we are rehearsing weekly to tighten up the 24 or so numbers that make up our two sets for November's gigs. There are the usual problems relating to getting five people together to practicethings like work, family commitments, holidays, et cetera, but we are getting there slowly.
I'm unsure what effect November's three gigs will have on my MS, so we are waiting until after the gigs before committing to any more. But I'm hoping that the adrenaline and the "feel-good factor" will see me through.
AAJ:You have set a goal for yourself. Once you have attained this goal, you plan on helping others who also have MS. Tell us about this.
PG: I expect to have raised the 10,000 needed for my wheelchair by mid 2009. The band will then find a local individual who, like myself, has been let down by the system and needs a helping hand to improve their quality of life. It doesn't necessarily have to be MS-related.
AAJ:You and your mates will shortly release a CD. Will the monies made from the sales of this CD go towards helping with either goal?
PG: We would hope to have completed the current fundraiser before the release date of our CD, so the monies raised from this could go towards helping out someone else.
Courtesy of Paul Gillies