Crossing the Line

By Corinne Francis

I am a Canadian Association of Occupational Therapists (CAOT) member who is currently a non-practising occupational therapist (OT). During my training, I was taught that spirituality was involved in adjustment to disability. By working with people with disabilities, and now finding myself with a disability, I have learned that for some people, spirituality plays a very important role in adapting to physical change. As service providers, we need to be aware of this need, and to address it as required.

Being a Christian, my experience will differ from those of other faiths. Nevertheless my beliefs and faith have enabled me to persevere, hope, and find a meaningful existence as a person with different abilities.

On November 18, 1991, I awoke with severe hip pain and crossed the invisible line between offering help as a service provider and receiving help as a consumer. Overnight, I had encountered a major life transition.

My emotions were first shock, then denial -- God must have made a terrible mistake! While desperately searching for that miracle cure, I put on a brave front. But the hurt and anger that were trapped inside led to feelings of despair. Because of changes in my physical ability, I was unable to be the wife and career woman I had once been, and my self-esteem faltered. As I was unwilling to accept my limitations, the unknown left me feeling afraid of the future.

My period of adaptation was slow and full of surprises. Being an OT, I used my skills and knowledge to "help myself." Unfortunately, some of what I had believed and used as an OT was unrealistic or simplistic when compared to the real challenges of having a disability in the community. The devices and mobility aids I had once cheerfully demonstrated were difficult to use due to both physical and emotional barriers. My disability revolved around hip pain. It changed my thinking, and close behind those thoughts came a flood of emotions.

The most challenging issues were my independence, loss of productivity, financial concerns, and the frustration in obtaining services and medical care. Most significant were the impact on my husband, Jim, and the nagging question: "How could I be of use to God in this situation?"

I quickly realized how important it was to care for my spouse. The stress and exhaustion of dealing with my disability meant a change in our marriage. With relief from some of the household chores and ensuring time for recreation, Jim was better able to cope. He continued medical school, while giving me tremendous support. He constantly reminded me of all the abilities that had remained unchanged. I was still able to provide emotional support, continue our intimacy and have fun! We communicated more often about sensitive issues, learning to tackle problems and ensuring that the needs of both of us were being met.

We were blessed with incredible support from family, friends and our church. We were financially unprepared for a drop in income, and were facing the high cost of medical supplies, when anonymous gifts and donations appeared. Several people demonstrated how our challenges helped them become more aware. I learned with whom to share my burden, and who could handle the changes in our life.

At this point my priorities were shifting. Who I was became more important than what I could do. Focusing on spiritual health allowed me to change my views towards disability and made me realize that this was not a tragedy. Visiting Vancouver for two months of Jim’s medical training, I was amazed at the accessibility almost everywhere we went. This gave me more independence and a new understanding of the rights and potential of people with disabilities. I gladly enjoyed the freedoms that consumers had worked so long to make possible. Upon returning to Ontario, it was easier to face the stares and strange comments.

Today my life is much different from November of 1991. I have a dog, Keisha, who is a companion and who provides a sense of protection. Having once rushed quickly through life, now, with the grace of God, I enjoy the simple things, pace myself and rejoice in my abilities. Having once thrived on organization and control, today I need flexibility and creativity to deal with ongoing loss and to achieve new goals. For the future, I yearn for less pain and impairment and an eventual return to work.

I encourage consumers to continue to be assertive and visible in the community, and to seek increased control in health and daily living issues. For service providers, re-evaluate your views about control with clients. These consumers are able, willing and the true experts. We can benefit from their knowledge and skills. In return, we can offer a variety of services to increase independence and to help maximize abilities. Together we can explore the other side of the line, making our services more responsive to the needs of the people we serve.

(Corinne Francis recently moved with her husband and dog Keisha to live in Chilliwack, British Columbia.)