Disability brought on by Multiple Sclerosis can have devastating effects, leaving a person in the margins of poverty and in some cases without the financial access to proper medical care – a sad reality of any illness that leads to long-term health issues. Statistics show that 80% of Canadians with MS are unemployed. But MS not only affects the person, but the families as well, especially those who provide care. The reality is, many family members who become caregivers are forced to leave work on a part-time basis. Or, where an extended family unit does not exist, options are often costly. But the cost is far greater than statistics could ever paint.
My father had Progressive Multiple Sclerosis, and his suffering cannot be described in a few simple words. I will attempt to paint an accurate picture of a person with MS – daily life, as well as the effect on the family.
It was Easter – I was about 8 years old and I sat in my father’s room in a nursing home drawing cartoon ducks and eggs. On the wall were several pictures I’d sent him over the years, as he was now living in Hants County, Nova Scotia, Canada. He received a small government disability cheque every month and was cared for by his aging mother, also in Nova Scotia. I lived with my sister and mother in Newfoundland, about an 18 hour drive away. Going to see my father entailed spending more time with family than with him, as he could not sustain the energy needed to get through the whole day’s visit.
On one particular occasion, I remember seeing a huge machine inside a glass window at the local hospital where we took my father for some form of treatment. My uncle, who had taken the day off to help my grandmother, told me he was going to be placed inside it to get medicine. I sat with my uncle and observed carefully as they wheeled my father into the room. My father had two brothers and their help was not uncommon, as he needed to be moved between his bed and his chair on a constant basis. On lunch breaks or after work they would drop by my grandmother’s home when my father was there, or the nursing home to help him get out of bed. They were both a constant in his life.
My father, however, would insist we leave the room when being fed or when he was being taken out of bed. But I wanted to see him, I wanted to know all parts of my father and would remain hidden behind a door to watch. I began to feel tremendous admiration for a man who could make me laugh, despite his pain and humiliation. I can still recall my grandmother running my father’s bath and assisting him to the washroom where she nursed him. This was only one of many memories I have of them together. Alongside his bed were numerous bottles of medications she labeled for him to take daily. Years later, I heard that the local community had raised several thousands of dollars in the hopes of finding a cure for him – all initiated by my grandmother, I am to assume. As a mother now, my heart aches for my grandmother, knowing the pain she must’ve gone through at having to see her son that way. She told me once in her quiet, strong way… “he loves you, don’t forget that”.
On the other side of his disability was my mother raising my sister and me on her own, trying to make ends meet on the small monthly benefit she received from my father. To this day I honor my mother for her strength. You see, upon hearing about his disease, my father no longer felt like a man. He could not simply sit in a chair and watch his wife provide. He was stripped of all that gave him a sense of manhood – in those days, a man was defined by his work and his ability to provide for his family. In his mind, a decision had to be made.
The door to the taxi closed, he took one look back and with his head down, he left.
My father left when I was 4 years old. When a father leaves his daughter, it creates a tremendous void in a young woman’s life. I balk when I hear feminist rant about fathers not being significant, as the misinterpretation of feminism is replaced with anger toward men. To me, feminism is equality on all levels, not hating. But I digress from the real issue – an absent father. Absence means poverty for some families, and for young women it means no role model for future relationships.
A study in Psychological Medicine found that girls whose fathers left when they were between the ages of 0 and 5 were more likely to develop depressive symptoms in adolescence than those whose fathers left when they were between the ages of 5-10, and more likely than boys in both age groups. I would soon come to know that my father’s absence would paint yet another picture, one that was becoming the topic of many studies on the subject.
When I reached my teens I began suffering from anorexia, bulimia and delayed mourning, as I like to call it. I was close to becoming a high school drop out, feeling enormous pressure to be perfect, though I could never be. I rebelled quietly by trying to hurt myself through controlling my own body, as I imagined my father losing more control over his disease. I felt that by making my body perfect, it would heal him. These youth issues grew from a feeling that my imperfection caused his leaving, his illness and later his death. I was suffering from grief and a life-long emptiness that made it hard for me to believe that anyone would stay with me. In my mind, a man left his family or died – there was no in between. But now, at the age of 46, I believe my healing has created a strong sense of self – one that has led to a great need to speak openly about the effects of my father’s absence and to write my story.
To close, I leave you with the last moment I had with my father. I was about 9 years old and I went into his room to say goodbye before heading back home to my mother in Newfoundland. He was tired and could barely move, and I leaned in and gave him a kiss goodbye. I walked out of the room and out to the car and was about to get in when my uncle told me to look up at the window (my father’s room faced the driveway). Through the small window, I saw my father. He had managed to pull himself up to wave goodbye and he was smiling – a smile that I hold dear to this day as a reminder that our lives are truly gifts.
You see, although he was not a constant in my life, his illness taught me that our true meaning in life is the lasting effect we leave on others. What did he leave me with? His legacy – the belief that I could do anything, that I too could pull myself up to any window to see the future as he did. And what he saw that day was his child, who would one day grow up to not only share her story, but his as well – a story he was unable to tell, having lost the ability to write at the age of 32.
Although my father lost his battle with MS at the age of 36, I hold his memory close and am grateful for hope – the hope that I found within his disability.
Photos by Melinda Cochrane – all rights reserved