I have no vision remaining due to Autosomal Recessive Retinitis Pigmentosa. In recent years I have become hard of hearing. I am 72 years old and lost my husband to renal disease in May 2016. I now live on my own, but am fortunate in that my extended family is supportive.
My late husband and I had been a pretty effective team for more than thirty five years but I hadn’t realized how dependent on his vision I had gradually become. As well as dealing with the grief of his loss, I was struggling with the prospect of having to manage and cope with daily living on my own. Despite the support and assistance of my family, I felt like a very shaky half of a broken whole. Marta understood all this much better than I did when she responded to my call for help. As well as very kind, she is very wise. Her suggestion that I would benefit from the services of intervenors was absolutely right.
As I meet more staff and other consumers at CHKC, my respect for both consumers and staff increases. Over the many years of gradual vision loss I have become familiar with the impact blindness has on daily lives, the considerable variety of different effects depending on the severity and type of impairment, the impact of additional diseases, and the different effects of age of onset, the age at which different milestones are encountered. The intellectual understanding of a process, however, does not guarantee emotional acceptance and the capacity to deal with all aspects of the disability.
I am only now beginning to learn about the impact of impaired vision in conjunction with impaired hearing and other physical limitations. I am in awe of individuals who have had to deal with severe hearing impairment from an early age. The impact of impaired hearing on the development of language and communication skills is severe. In contrast, I was in my mid-twenties before my RP was diagnosed and in my sixties before developing hearing problems. In fact, I was almost legally blind (restricted fields) before even becoming aware that I had a vision problem.
At the time my RP was diagnosed I was the Head Nurse (a now extinct occupation) of a small haematology unit in a now extinct Toronto hospital (Wellesley). After the RP diagnosis, I went back to school, and was then fortunate to acquire employment (initially through federal grants for the 1981 International Year of the Disabled), developing Management Information and Program Evaluation Systems for the Vocational Rehabilitation Division of Goodwill Industries, Toronto (now also extinct). I have been blessed with opportunities not always available to many individuals who have disabilities.
As well as my admiration for the courage and determination displayed by individuals with severe hearing impairments, I also admire the breadth and depth of abilities and determination of CHKC staff to mitigate the effects of these impairments. My first attendance at a Seniors Drop-in was an almost overwhelming experience. I had no idea there were so many different ways intervenors could facilitate the exchange of information. As I have come to know more intervenors, as they have accompanied me at meetings, at medical appointments, on shopping trips and on visits to my local library, my understanding of and respect for their skills and their dedication to the needs of consumers has increased.
In the few months in which I have been receiving services, CHKC has giving me the opportunity not only for learning to live independently, but also to learn and expand my personal horizons. I am learning a great deal from everyone I meet, both staff and other consumers. I look forward to learning more.
I know I can always call on help from my family and other friends in an emergency, but it is good for my pride and sense of self-worth that because of the services of intervenors, I don’t have to depend completely on family and friends for my daily well-being. I can ask for help sometimes when needed without becoming a burden.
I am very grateful to CHKC for everyone’s understanding, kindness and compassion. One of the new goals I have set for myself is to find the best ways to contribute to the many good things that happen at both 210 Empress and 422 Willowdale (hopefully without becoming a pain in the neck to either staff or other consumers)!
Christine Nichols-Whiteley was born in Kent, England in 1944 and immigrated to Canada with parents and two older brothers. In 1949, she graduated from Wellesley Hospital School of Nursing, 1965. She also holds a BA (Hons) Sociology from Atkinson College, York University, 1979. She met her husband, Peter Michael Whiteley at Goodwill Toronto, 1981 and was diagnosed with Autosomal Recessive Retinitis Pigmentosa in 1969/70.