John is an old and very close dear friend. We’ve known each other well over 10 years. Yet, for most of that time, we had never been in each other’s presence. It was the time before Skype and for a number years we didn’t even know what our faces looked like.
Our common interest in health brought us together in a series of online teleconferences.
In his twenties John had been diagnosed with muscular dystrophy, a degenerative disease that results in increasing weakening and breakdown of skeletal muscles over time.
His main focus , since then, has been to live fully while doing his best to understand, beat or delay the progression of the disease. Engineer minded, he converted a van into a motor home, cleverly adapting it to be a handicap friendly and comfortable ‘home away from home’ vehicle. His freedom wagon, as he put it. For 10 years, while he was relatively mobile, he travelled all over North America and Mexico, enjoying the beauty of the world and the freedom of mobility.
After those series of teleconferences, we decided to stay in touch. We lived in Canada, but at its opposite ends. Me in Ottawa, he in Vancouver Island. We would phone each other regularly and we’d simply talk. We had common interests. We talked about our lives, happiness, relationships, all the big questions about who we are and why are we here, the meaning of life, death and dying, and everything in between, joy, pain, suffering, fears, his quest to overcome the disease. We talked a lot and we laughed a lot.
When we first met, John was already unable to walk. I knew that one day I’d like to meet him in person. When? I had no idea. We stayed in touch for many years, first via phone, later via Skype.
In 2016, I made it a priority. This time I travelled from Portugal to British Columbia, Canada, to meet him in person and spend 2 weeks as John’s guest.
I was in awe witnessing his daily reality; exercising in bed first thing in the morning, washing, going to the bathroom, getting dressed and all the tasks required before he was ready for the day on his wheel chair or his scooter; none of this could happen without the invaluable help of his caregivers. Apart from his physical disability, I could see that John was perfectly normal, and lived a normal, healthy life. He does his shopping, he reads, he is active in the community, he goes to the pool, he cooks and does the dishes. He has many friends and is surrounded by many people.
Marvelled at John’s capacity to adapt with such a life affirming and humbling attitude to this degenerative disease, I was inspired to document his positive and rich life in photos.
His days of travelling are long gone. His freedom wagon is for sale now. But John is still thriving surrounded by his amazing network of love and friendship.