To try and get a better view of the road ahead, I am reading a book titled "Finding Meaning with Charles." Since my CBGD diagnosis I have searched for some patient testimonies to get some semblance of what to expect. There is an abundance of caregiver sites but in my "victim" state of mind I dismissed them as not possibly knowing what I (or other "victims") are feeling.
While there may be some truth to my assumption, in that no one can KNOW what another feels, I am finding that I am gaining valuable insight into the state of mind of a caregiver. As lonely as it feels to be trapped inside a degenerating shell, I am fortunate to have a loving wife that is steeling herself to the task ahead and we will travel this road together.
Of the many insights I have gained, perhaps the one that hit home most was a trait I shared with Charles. We were both independent, athletic individuals that once our symptoms began to overpower us, we choose to attempt to hide them. We both told our wives to keep the secret. Denying them of their own support group.
The author of the book, Janet Edmunson, gave me the ability to see that I was not alone but I was forcing my wife to be. As a result I have told my wife that I am prepared for the secret to get out if she wished to tell her closest friends and family. She seemed relieved.
I will, I'm sure, refer to The Book from time to time as I move along. Thank you Janet.....and I'm sure my wife thanks you.
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Bob,
ReplyDeleteI'm touched by the reflection you shared from beginning to read my book. I hope you find more insights and uplifting examples to help you in your journey to live life fully, even with this disease. Janet Edmunson