This is one of my favourite photographs, taken of my older brother, Donald, and I when I was about four months old. Isn’t he cute? He looks like a perfect child and in many ways he was, but what you can’t see is the damage that had already been done to his brain when he suffered from encephalitis as the result of having measles about 10 months before this photo was taken. No, this isn’t a rant about vaccination, but it definitely could be!
Encephalitis is acute inflammation of the brain caused by either a viral infection or the body’s own immune system mistakenly attacking brain tissue. The most common cause is a viral infection and it occurs in approximately 1 in every 1000 cases of measles. It develops rapidly and requires immediate care; care that was not available in the small, isolated town where we lived in 1952. In fact, it was not until a few months had passed and Donald began to lose his words and exhibit other signs of brain damage that our parents realized that something was seriously wrong.
As I grew up, I came to realize that my big brother was different from other children and I loved him with a fierce and protective love that endures to this day. Though his brain injury robbed him of the ability to speak, I knew he loved me too. In fact, I remember Mom telling me how difficult it had been to discipline me when I was little because if she spanked me, Donald cried too! She also told me that before I could say his name, I called him Dowboy.
Donald has always been a gentle soul and very easy to love, but I remember one occasion when some neighbourhood boys teased me about my brother, the “retard”, a word that I have always hated with a passion. Perhaps, it was then that I learned the power of using my words. I was a timid child, known amongst my peers as a goody two-shoes, but in that moment I must have become a wild and vicious creature! I don’t remember what I said, but I dressed those boys down to such an extent that word got back to my parents about how I’d stood up for my brother, and my father speaks of it admirably to this very day!
Though I do remember my grandmother telling me more than once that I would always have to watch out for Donald, I don’t recall my parents ever making me feel that I would have to carry the burden of caring for him. Regardless, I grew up with a tremendous sense of responsibility for Donald that has remained with me through the years even though he lives a long distance from me.
With two other handicapped men, Donald lives in a fully staffed house in North Vancouver that is operated by the Community Living Society. CLS provides residential and personalized community-based support to individuals throughout the Lower Mainland of Vancouver and the Upper Fraser Valley. As a family, we are so blessed to know that Donald receives excellent, compassionate care and lives a productive and meaningful life.
In his earlier retirement years, my father was actively involved as a CLS board member and served as president of that board for several years. Until recently, he has been the primary family contact for everything to do with Donald’s care, but Dad celebrated his 92nd birthday last week and over the past couple of years, I have been gradually taking over that role. CLS is committed to working with the families of supported individuals so meetings have been scheduled when I’m in Vancouver to visit, phone calls have been made, and when necessary, paperwork shuffled by email or snail mail.
Then came this week! On Wednesday morning, I was approaching the second last green on the local golf course when my cell phone rang. It was Trudy calling; manager of Donald’s house, and a dedicated caregiver who has been involved in his life and therefore, mine, for over 30 years. She was phoning from the emergency ward to let me know that he had fallen and they were waiting for x-rays to be taken. To make a long story short, Donald had a fractured hip and underwent surgery yesterday. It has been killing me not to be there. In my head, I know there’s nothing I could do that isn’t already being done, but my heart wants to be with my Dowboy! Fortunately, one of his caregivers has been with him throughout each day since he arrived at the hospital and they have been texting me regularly with updates. The orthopaedic surgeon and the anesthetist were both in touch with my sister (a medical doctor) by phone to discuss the medical details. Today, the physiotherapists began working with Donald and they already had him standing up. A lady from his church even visited and brought him cookies! Yes, he is in good hands and, though my heart wants to be there now, I will wait until early August when I’ll be in Vancouver to help him celebrate his 65th birthday!