As my health began to stabilize I was living in a world essentially unchanged, but totally unfamiliar. The career that I dedicated a good portion of the previous ten years to established slipped from my fingers. I had finally established my reputation and role professionally only to hear from my doctor that I would never work again. Forms were submitted with terms like "this patient is permanently, completely disabled. She is unable now, or in the future to perform any task related to her former job, or any job." Insurance forms responded by declaring me a victim of a "dreaded disease" and approved my claim for permanent disability.
I was grieving this loss of my career as if a child had passed away. My sense of self, my financial security, my connection to the world socially and career persona were all, in an instant gone. Physically, I needed help with the most basic tasks even on a good day. Achievements were no longer measured in professional designations, with degrees or diploma's, or came in the form of monetary compensation. Getting from my bed to a sitting position, getting dressed, eating food, holding objects in my hand became the challenges that I faced each day.
The people who were closest to me were my caregivers, my cheerleaders, my counsel and my strength. We found ways to infuse humor into the days. As my body began to slowly regain function I experienced what I would describe as shock like sensations throughout my body. My daughter went out to buy lightening bolt earrings. She helped me get dressed, ran small errands, paid some bills and withdrew money to buy things that she needed. The independence was both exhilarating and overwhelming. My son carried the groceries,unloaded the dishwasher and cut the grass even though his small frame could barely push the weight of the lawn mower.
As a family we celebrated the insurmountable individual challenges of daily living growing closer despite the immense challenges facing each of us. During this time we reached out to the local Multiple Sclerosis Society for support and information. The connections we made at the office met our practical needs and far more. I was provided with assistive devices like a bath chair, a walker, a wheelchair etc. My children benefited from Kidz Club a recreation program that provided information and support during this critical time.
Politically, steam was being built in a collaborative community effort to recognize the needs of children who where in families such as mine. They gave a voice to children living in homes that provide care to relatives who faced chronic illness or language barriers. The group, The Young Carer's Initiative was made of professionals working in organizations who saw that a family centered approach was needed to address the complex needs of the families they serve. Most organizations focused on the identified client- the person in need of direct service while there is little done to acknowledge or address the complex needs of others such as young people who take on tasks far beyond those that are prepared for developmentally.
The MS Society was a share holder in this initiative along with 16 other services such as the Alzheimer Society, Family and Children's Services, AIDS Niagara, brain injury services, children's mental health programs and others. They pooled their expertise and lobbied for funding to create a service with a family centered approach to provide supports to children who were caregivers. They were identified as "Young Carer's".
My daughter secured a summer position with the MS Society and began creating educational materials that could be accessed by staff, professionals, volunteers and the community about MS. At the age of 17 she was given a role that allowed her access to critical information about MS and the opportunity for leadership overseeing a children's summer program. I began attending committee meetings for the Young Carer's Initiative. At the table I was invited to provide the perspective of families. This provided me with an opportunity to use the skills I had worked so hard to develop in my career in Social Services. It occurred to me that neither my life or my career was ending as I had previously thought perhaps the momentum of my life's experiences had not been lost but in fact redirected.
“I believe that everything happens for a reason. People change so that you can learn to let go, things go wrong so that you appreciate them when they're right, you believe lies so you eventually learn to trust no one but yourself, and sometimes good things fall apart so better things can fall together.”
― Marilyn Monroe
― Marilyn Monroe