Even as she faced imminent death, Maureen Kennah-Hafstein’s determination and focus to improve treatment and outcomes for people with Parkinson’s disease in B.C. held strong.
Her years as a teacher were evident in her approach to this goal: she also wanted to educate people about the disease. In keeping with her goal, Maureen left the following letter with me so it could be published in the Observer after her death on Nov. 2. Her letter follows the dozen articles the Observer has published about her and Parkinson’s since she came to the newspaper in June 2018 to ask then-editor Tracy Hughes for help in her quest.
As I told Maureen, it has been an education, an honour and many times a joy to have written stories with her along her path, to have witnessed her tenacity in demanding and working toward a better world for others, to have seen her courage, humour and generosity in sharing her heart-wrenching details of Parkinson’s, and to have witnessed her gratitude and appreciation for so much, despite her pain.
She did not act for accolades or recognition, however. Although Maureen was justifiably proud of decreasing the wait list for the surgery, she wanted more. My hope is her overwhelming efforts continue to produce results, that the province ensures the surgeons and operating rooms necessary are in place so those people who could benefit from Deep Brain Stimulation surgery can access it when they need it – before the surgery’s benefits become limited by the progression of the disease.
At 49 I received the diagnosis of Young Onset Parkinson’s Disease.
An early diagnosis meant that I could potentially live long enough to experience the full range of symptoms from the disease. Not to mention, a long list of side effects from the treatments I would need as the disease progressed.
There would likely be a long road of suffering ahead.
I would like to share with you what Parkinson’s has given me while taking most everything away. I have to admit that it took a lot of emotional effort over the 15 years to cultivate the gratitude that in the end coloured every aspect of my thoughts.
Enduring the never-ending parade of Parkinson’s symptoms and side effects provided me with the determination and courage I needed to endure the worst of it. For me that was deep brain stimulation (DBS) surgery.
Even though it was the hardest thing I have ever had to face, it has provided me the greatest relief of my most intolerable symptoms.
I am forever grateful for the unwavering support of my family and friends who have stood by me from the beginning to the end.
I can’t imagine how difficult it must have been for them to stand by me when I chose a date for medical assistance in dying (MAID).
There would never be enough preparation. Our four family meetings that covered the very basics would have to be enough.
I initiated all of the details of how I wanted things to go on the day of my choosing and always remained flexible to suggestions.I am forever grateful to my family for honouring my decision to end my suffering.
They knew that it would be my decision alone about when the time was right. Parkinson’s gave me at least as much as it had taken away. During my tremendously emotional journey I learned what it meant to be a spiritual person.
For that I am very grateful.
It took some time to get everything in order. Like a good teacher, my lesson plan was set. I felt ready and satisfied that I had done my homework.
I knew that the people I left behind will have to follow their own path and deal with the loss in their own way.
My life has been enriched because of my difficult journey with young onset Parkinson’s disease.
I was able to see the beauty and joy in the small things around me every day. I was able to notice the incredible synchronicity of events more easily as a result.
I can only speculate how a Parkinson’s-free path would have influenced my personal development because that was not my path.
A student of mine at Eagle River Secondary in Sicamous asked me shortly after my diagnosis, “Why do bad things happen to good people?”
The answer I can now confidently give is this: “It was a bad thing, but it gifted me with awareness and gratitude that I otherwise could not have ever known.”
I believe that gift made me a better person. My lesson learned: when something happens like winning the lottery or getting diagnosed with young onset Parkinson’s, you can’t qualify it as good or bad until you have lived it to its conclusion.
I believe that I have done that, on my own terms with the love and support of my beautiful family and incredible friends.