Photo Credit: Julia Freeman-Woolpert, Concord, NH, USUnderstanding the impact that significant life events have on those around us is particularly difficult for people who are living with a chronic illness or disability. When I was first diagnosed with MS someone said to me, MS should really be called ME because it is so consuming. Indeed learning to adjust to new experiences of what is normal is a difficult process. It is one that can be viewed as akin to the grief process.
Elisabeth Kubler Ross describes the five stages of grieving as denial, anger, bargaining, depression and acceptance. In grieving losses through death, these stages do not occur in clearly defined, neat sequences but they come in waves along the journey of recovery. In dealing with chronic illness these stages continue along a person's life span as the illness continues to present different challenges, losses and imposes perpetual change on our lives. All this grieving is hard work and it is often as consuming as dealing with loss of life. After all the perpetual changes redefine, and challenge our self image, our ability to interact with the world, and our ability to function in day to day tasks.
As we work to accept these complex changes so many emotions rise up to the surface. We question how people view us, we question our abilities and needs, we deal with layers of red tape to meet our basic needs and we struggle to manage our activities of daily living.
Most people that I know would say that their illness or disability has had little impact on their friends, families and caregivers. This ideology was perplexing to me to some extent. But as I opened my mind to hear their perspectives I learned how painful it was for some to see how people around them were impacted. Others, tell me that their kids just accept that this is just how things are and they manage to live their lives without it impacting them.
I have always maintained a conscious effort to be in tune with how my disability was impacting those around me. I was angry that my kids had to have this intrusion in their young lives and I was ever aware of the impact it has had on them. My daughter was 14 when I was diagnosed. She was entering into her grade nine year of school. This was a monumental new chapter in her life. High school is a big deal, and she needed me to be there for her. She wanted me to go shopping for new clothes to make sure she was putting her best foot forward. She wanted to tell me all about her teachers, friends and the events in her life. All this at a time when hormones and emotions were in high gear and life was becoming more complicated.
I wanted so badly to be a part of everything in her life, but I was recovering from an aggressive attack of Multiple Sclerosis. I was living with paralysis on my left side, very limited mobility, extreme fatigue, and a host of other scary neurological symptoms. In addition, I was weaving my way through a host of powerful emotions and living with some daunting medication side effects. Despite my greatest desires to minimize the impact on her and her brother, the fact is that this kind of event is not the norm. As such it is uncharted territory for everyone involved. My kids, my parents, my extended family and my friends all to a greater or lesser degree were impacted, molded and shaped by this unwanted, unexpected and unwelcome turn in my health.
"The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These people have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern, beautiful people do not just happen."