“Over time, we have become pillars of the arts and culture community in Port Carling in Muskoka. It keeps us very busy. We have a gallery attached to our home, and we run artist-in-the-school programs, give lessons and do other cultural programming. Our lives were turned upside down though, on June 27, 2013 when I (Gary) ended up in the intensive care unit (ICU) at the hospital because of an unidentified virus. I was totally paralyzed, unable to move anything but my eyes. The exact cause is unknown but is an unidentified virus. Faced with the challenge to adapt to a new way of living, we both together, have approached this with the same vigor as when we were building the arts community. Our experience shuttling between various hospitals and healthcare facilities in Toronto and Barrie has made us aware of some of the gaps in the healthcare
system. We’ve seen first-hand what it’s like to hit road blocks along the way.
One of these road blocks was learning that I wouldn’t be able to go home. I use a ventilator to help with my breathing and I was told that there weren't enough resources (nurses or trained staff) in Muskoka to be able to provide care for someone who uses a ventilator. With some creativity, persistence, and help from Heather Hollingshead, we’ve been able to find another way.
We met Heather, a Regional Services Coordinator with SCI Ontario, when I was in the ICU. She has been with us on this journey ever since. At the time, we hadn’t really wrapped our heads around what I would need to be able to live independently. I would need things like a wheelchair, a modified vehicle, and renovations to make our home accessible, plus 24 hour care. Heather was able to let us know about all these things and right away began the process to get me a wheelchair. She was also able to put together one of the biggest pieces of the puzzle - getting us a home.
After more than a year in ICU I was accepted into the Transition to Home Ventilation Program at West Park Healthcare Centre in Toronto. During this 14 week program, that actually turned out to be almost year, we learned that local healthcare resources wouldn’t be able to provide that same level of care for me to return home. Fortunately, they applied for Direct Funding and were successful. This was the key to enable me to return to my life in Port Carling.
Throughout my time in the ICU and at West Park, I remained involved with the running of Muskoka Chautauqua, which Gayle and myself co-founded 20 years ago. Since returning home to HQ I am right back in the thick of things! With the help of an eye-gaze computer I am able to work alongside Gayle and Chautauqua staff in the office.
Now that I have been home for two years and experienced the breadth and depths of the health care system inside and outside of institutions, and following the challenges I have had to face, I am committed to making a positive difference in the future of healthcare delivery in Muskoka and the Province. I have become a healthcare advocate, working with professionals within the Ministry of Health and Long-term Care and the North Simcoe Muskoka Local Health Integration Network.
We have lived in Muskoka for many years and have been long-time advocates for arts, culture, and life-long learning. We have been celebrated and received a number of awards for our work in the community. I was named Citizen of the Year the year before my ordeal began. Now we happily accept speaking engagements such as at Critical Care Services Ontario Community Care Council, Rotary Clubs, and TVO’s The Agenda to advocate for positive change in healthcare delivery.
We are proud and grateful to live in such a caring and supportive community and acknowledge Independent Living and the Direct Funding program in playing such an integral part in my ability to live at home and my ability to contribute to my community”.