The following very moving letter is from a woman who suffers from a rare neurological disease - posterior cortical atrophy. Her struggles to remain independent are very common among people who are newly diagnosed. We are grateful that she bravely shares her feelings with us as they may serve to help another person learn to embrace the love and help of a Share The Care™ group.
To My Family and My Family of Friends,
Before the diagnosis of this disease was confirmed, I had already begun to become dependent on Kirsten, Tammie and Steph, and it was a struggle every time to ask them for a ride, to fill out a paper, and to help with simple daily tasks. I could see it took a toll on them, and I tried hard to manage more things by myself. Asking for help has never been my strong suit. So all along the way, the critical voices in my head said,"If you just tried harder you could see better. If you just tried harder you could do that. You are making too much of this and of yourself!"
Then I got lost a few times and that terrified my daughters. NYS provided me with a mobility trainer, who came to help me with daily tasks. The complication of that is that this disease is not about eyeballs, it is about the brain. Things that people who are blind can do become a challenge for me because the signals from the brain scramble things up. So things I have done all my life – dressing, cooking, reading mail and the newspaper, mending, slicing cheese and all the every day things we take for granted, became more and more challenging. Along the way, I became isolated. I couldn't walk safely alone anymore. The world was shrinking.
When the idea for Share The Care™ came up, my critical voices raised up, "It's too soon, you're making too much of yourself. If you just tried harder, you could do it!"
Because I like to be in charge of things and want to know what is coming, I decided to visit Woodbrook and Bethany's assisted living facilities. When we left Woodbrook I said to (and surprised) Bonnie that I could move into Woodbrook tomorrow and be perfectly happy – what a relief it would be! From that pivotal experience came the impetus for organizing and starting Share The Care™ . At that point, I began to give myself permission to invite and accept people's help and loving kindness. About the same time, I was having difficulty with dials on the stove and cooking, and Meals on Wheels was suggested. I asked my Doctor about it and she made a referral. From deep inside came the comment,"I could fix my own meals if I wasn't so lazy." If I needed help in going in this direction, an incident of reaching across the stove, forgetting I had soup boiling, and coming close to spilling it all over myself confirmed it for me. I've moved into Share The Care™ without any disastrous events.
Since all of you rallied, expressing your love and willingness to be in my life in this way, I have found myself joyfully getting out of bed in the morning knowing that people would be coming, tasks I needed or wanted would be taken care of and what I've gotten is more than I ever imagined. My restlessness is gone, my stress level is lower, my blood pressure is great, and I feel a part of the world again. I feel connected with people. My energy is positive and bright and awake. The side benefits are that I am getting to know each of you in a deeper way, and I think the same is true for you getting to know me. My daughters are less stressed and are grateful that so many people have stepped forth. Samantha has joyfully greeted everyone who has come and they have responded in kind. So there have been another's eyes to take Samantha to the park, succulent strawberries, a purple ball for Samantha, a visit to Aunt Esther, clean sheets, buttons on sweaters, conversations, lunches, trips to the library, laughter and a sense of being back in the world in a really full and meaningful way.
Thank you more then you can ever know. I hope that the gifts you give me are given back in some small measure since you have handed so much of life to me.