I don’t know exactly when it all started but I do know that in the early 2000s my health started to take a turn for the worst. I was a very busy musician in New York City at that time. I was playing in Manhattan regularly, touring throughout the United States and the rest of the world, playing on Broadway, and working with two party bands. I also had a young son and Julie became pregnant with our daughter Echo. I was an extremely tired man! My body started to manifest symptoms of exhaustion but it seemed to be a little more than that. The funny thing is that I actually thought it was kind of a good thing in a strange way. It meant that I was working and making a living!
I remember once I had a low grade fever for about 3 weeks. I also remember I had skin problems that came and went. I really didn’t think a whole lot about my health at that time. I was too busy! However when we moved back to Canada from the New York area I realized I was starting to feel much worse. My sister Charmaine had died a year earlier, my daughter Echo was born, we moved to Toronto, and I continued to work in New York City in two bands. I was under a great deal of stress and pressure. This intensity continued into 2005 when, in the summer of that year, I became unbelievably sick. I could barely get up off the couch without help. My joints were so stiff that they felt arthritic, and I ached as though I had a fever but 10 times the intensity. I could not ignore my health any longer.
All the doctors I saw were mystified. They didn’t understand why I was breaking down in the way that I was. After several hospital visits I was finally diagnosed in the oncology ward, as they suspected that I might have a form of cancer. I have system lupus erythematosus; otherwise known as SLE. I learned this right before I went on a tour of Indonesia and Japan later that year. I started seeing a rheumatologist and taking medication. I figured all was going to be good and that I could get back to my career. It turns out that I was very wrong. The mystery was gone but the real adventure was just beginning!
When I returned from the tour I was extremely ill and all my symptoms returned with a vengeance. My rheumatologist recommended that I see a nephrologist because my kidneys were taking the brunt of the disease. I started seeing Dr. Andrew Steele. He saw me through eight years of health difficulties. SLE is a difficult condition in that the body’s immune system starts to attack its own tissue. The disease has no known cure and the medical community does not know how it is contracted. In my case, SLE was eating away at my kidneys’ glomeruli and causing me to slowly loose 90% of my kidney function over a 7 year period. By December of 2011 I went into Emergency and then Dr. Steele’s office after a major flare up and he told me that I had to go on dialysis Within a few hours of that conversation I was on my back getting a hemodialysis catheter inserted into my chest. I was fully conscious for that procedure and quite terrified! I was very demoralized but I knew that I needed to survive somehow and try to get back to a normal life. In retrospect I realize now that I was being naive, but I believe that my naiveté was what kept me strong and hopeful.
I lived with hemodialysis treatment for the winter and into the summer of 2012. This form of treatment was extremely taxing on my quality of life. I had to deal with having a catheter inserted in my chest; about a half an inch under my collar bone. It felt like someone was constantly pulling on my bone. My dialysis regiment consisted of attending the dialysis unit three times a week and the sessions lasted for four hours. I was completely drained after my treatments. One needs to keep in mind that the machine essentially removes, cleans and replaces ones blood. It also regulates the amount of fluid in the body. It is a very exhausting procedure.
I was on hemodialysis for 6 months before I switched to Peritoneal dialysis. It was easier in that I didn’t need to stop my life to attend the kidney clinic dialysis unit. However, I did need to treat myself by doing fluid exchanges three times a day. These exchanges involved keeping my abdomen filled with a litre and a half of fluid that cleaned my system via the peritoneal cavity and exchanging used fluids with clean solution. The fluid also passed through a catheter that was implanted in my abdomen. Both forms of dialysis were very difficult to endure.Approximately half way through the year my wife Julie decided to get tested to become a kidney donor. I was really unsure about her decision at first and I really didn’t think that we were going to be compatible as it’s more common for blood relatives to fit the required physical elements for transplant eligibility. Well it turned out that she matched me perfectly! We were a ‘go’ for transplant as far as those tests were concerned. I was still nervous about putting her through all of that drama but Julie’s selflessness and bravery won me over.
The interesting thing about being eligible for transplantation surgery is that both parties have to be fundamentally healthy…even the sick person! That was naturally difficult for me as I was actually very sick. In fact my transplant date was pushed back to the winter due to a bout a arrhythmia and some minor heart difficulties. I had other issues as well, like very high blood pressure, but the heart trouble could prove to be a deal breaker. The operation was set for January instead of the original fall period. We were both disappointed, however I didn’t want to have any complications during the surgery so I simply took the heart medications and tried my best to rest up despite continuing to work. Julie had to take care of herself as well. Donors must maintain a certain weight and there can be no trace of blood pressure, diabetes, or mental stress.
On January 6th 2013, Vladimir and the Willing minds production team drove Julie and I into the city for our hospital stay. They had been filming my family quite regularly for about a year prior to that day and Vlad and I definitely didn’t and couldn’t miss any of that drama! I had to stay in the hospital overnight so that I could have my last dialysis exchange and immediately start getting prepared for the operation the next morning. Vladimir was so fantastic throughout this period in particular. He paid for Julie to stay at a hotel near St. Michaels Hospital in Toronto. He also took us and the whole crew out for dinner that evening as well. It was all incredible moving for Julie and I . We both felt very loved.
On the morning of January 7th 2013 Julie went into surgery first thing in the morning. Her surgery lasted somewhere between three and four hours. I was wheeled into the waiting area on a gurney while she was in surgery. The thing that I found kind of funny while I was laying there was that “The Price is Right” game show was on the television in the waiting area, and I kept thinking how funny it would be if the last television show I ever watched again would be a game show! The strange humour that I found in that situation actually really relaxed me. I eventually saw Julie being wheeled out of the O.R. and I was being pushed in. Dr. Jason Lee was there to greet me with a smile and everyone in the room looked relaxed. I knew that I was in good hands.
I remember waking up briefly after the surgery and I asked “did you start yet”? Dr. Lee said “we’re all done and everything went great!” I then remember waking up in my room later that evening flying on morphine and getting a visit from Kai, Echo, and my in-laws. I was so happy that the operation was behind me and above all else the sickness was gone! I felt better…even with all the pain! I have only continued to feel stronger and better ever since that day.
During the spring of 2012 I decided to have an operation to change my hemodialysis catheter to one that would accommodate peritoneal dialysis. James Blood Ulmer called me once again, about doing some performances in Detroit and Los Angeles. I was determined to do them so I asked one of the social workers in the dialysis unit how difficult it would be to switch to the peritoneal dialysis treatment. Dr. Steele had informed me that I might want to look into that approach as he knew that I was still trying to maintain my career and professional life. She said that it would be about a three week recovery and that the company that delivers my fluids and extra materials could potentially deliver them to any part of the developed world if arrangements were made well in advance. Well…that seemed like the thing to do, and it sounded like a piece of cake! It was the right thing to do in terms of my regaining more of my independence but it was far from a piece of cake.
While I recovered from my catheter exchange operation I got a call from my old high school buddy Andrew Mech. Andrew was one of the very few high school friends that I stayed in touch with over the years. In fact he was in my first band called ‘Warrior’. That band was critical in my development as a musician and a drummer. He had called to let me know that he was on his way to see me. I was so touched because Andrew had to drive all the way from Oakville to Oshawa where I live. Oakville is a suburb west of Toronto and Oshawa is on the east side. That’s close to 100km of sometimes terrible Greater Toronto area traffic! After he visited with us for a while he suddenly said “Aub…we should make a movie of what’s happening to you!” I thought he was nuts. I just wanted to get well enough to somehow get back to my life and career. Over a matter of weeks Andrew contacted an old film professor from Sheridan College and before I knew it Valdimir Kabelik was in our living room explaining how we were actually going to make a documentary movie. It took about two years but it finally happened.
Stay Aubrey premiered on November 7, 2014 and it was an incredible night for my family and I. I couldn’t believe it was finished and brought to the public. The pitching process was incredibly difficult. I had no idea that the level of rejection in the film industry was so much worse than in the music business. It’s amazing any film or television show ever gets made! In any case StayAubrey! hit the big screen at the prestigious TTIFF Bell Light box in Toronto and it was clear that the movie moved people tremendously. I hadn’t seen any edits of the film so my family and I went along for the emotional ride. It was naturally more acute for us because…. well….it happened to us!
Vladimir Kabelik and all of his amazing colleagues put together a film everyone can relate to. It also is a shining example of life when a family pulls together to overcome a daunting obstacle. That sort of film making isn’t really in style in the current cinematic world. That’s probably why it hit the audience in such a strong manner.
My parents, Enid and Howard Dayle, came all the way from Montreal to be at the premier. This happened in spite of their age; my dad is 95 and my mom is 89. I’m so blessed to still have them. They had a blast.
The film initially aired in 3 provinces in Canada on OMNI television during the late winter of 2015. It has started to run on television once again in 2016. You can view the movie on the OMNI website but it is only available in Canada. This reality stems from the way that Valdimir had to license one of the musical pieces that was written by drummer Lenny white. This could have been easily avoided if we had gotten footage of one of my original pieces when we filmed the studio session segment of the film. I was feeling exceptionally bad the day they came and I planned to record the Lenny piece first because I felt that I could physically and mentally handle it. I wasn’t thinking about the movie production at all. Vladimir didn’t realize that Sophistifunk wasn’t one of my pieces and Andrew Mech wasn’t there to advise him. Andrew worked for Warner Brothers in their publishing department for years and he would have set that whole thing straight. Ah well….c’est la vie! As a result the production company could only afford a geographically limited licensing agreement. My hope is that this will change one day soon. Maybe we will be able to sell the movie once the agreement with OMNI is over. I’ll keep you all posted!
One of the things that production of the movie reminded me of, was how important it is to persevere in ones endeavours. Stay Aubrey nearly died several times during its production. Vladimir simply never gave up! He kept knocking on doors and dreaming up new ways to complete the film no matter how negative the road ahead looked. I know this as a musician and it was great to be reminded of it during such a difficult time for my family. Being part of Stay Aubrey was a key item in keeping me positive and as strong as I could be. Thank you Vladimir, Andrew and everyone at Willing minds production!