With the exception of my dog anxiously watching me through my office window, I spend most days alone. I prefer it that way. Superwoman leaves for work before I get up and mornings are tough! When I contemplate the whole "Life with Dignity" issue I find that I have already lowered my dignity standards.
I guess that's how things work. As I age I learn to accept the physical limitations, the sags and wrinkles, even the lack of respect that I, at one time, owned. The difference is that my illness has brought this on in three years not thirty.
As the son of a career military father I learned to travel and adapt early. Being able to travel to unknown places became a strength. It taught me to accept other cultures and to see life through more objective eyes. Ironically, now I find that my world, once global, has shrunk to a few miles. Oh, I still watch the world news but now my view is limited to what others choose to allow me to see.
My real dignity never came from my physical being but from the wisdom I gained by opening my eyes and having a willingness to see the world through the eyes of the less fortunate. I knew early in life I was lucky. It seems that I always understood the ignorance of a person bitching about having to choose a language at his ATM while another person struggled to feed his family that day.
As my body fails me at an exponential rate, I cling to the dignity of my mind. When I find I begin to cross the threshold of mindlessness, I pray I have clarity to see it. My dignity will then give me the strength I need.
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What a beautiful montage of your life you've put together. Having grown up as the son of a military officer, and having lived and worked on five different continents, I can certainly relate to much of your background.
ReplyDeleteUnfortunately, dealing with a debilitating "adversary" of an illness also lays claim to my life. I was diagnosed with Parkinson's 15 months ago, but its rapid progression and the manner in which the symptoms are presenting themselves seem to suggest something in the Parkinson's Plus family. The doctors suspect MSA but are taking a wait and see approach to diagnosis. While I understand their reasoning, and am not in a panic about the possibility, I do find myself more than a little obsessed about the issue. I am eager to know, to the degree possible, what it is that I am up against.
My adversary needs a name.
Thanks for sharing your experience, and your journey.
Bill,
Delete"Adversary" is a very good term. Early on, I too looked hard for a specific name to my "adversary." It was sick relief when my neurologist finally gave it a name. I think if you'll go back to one of my first or second posts in 2008, I discuss my feelings after my initial diagnosis.
I was relieved to know what I was up against and steeled myself against the challenge. I was naïve! While I did accomplish a lot in the way of preparation, I had no clue the toll that the physical challenges would take on my psyche. I'm afraid I spend way too much time in very dark places these days.
I hope you find peace my brother.
Thanks, Bob. I found it helpful to go back through your previous postings, particularly the early ones, to get some insight into your mindset as you have navigated this unexpected, and unwelcome, path. I can relate to much of what you expressed and, although I cannot exactly claim to have found peace (yet) I do find myself resigned to the likely outcome of this battle. So far, I have been diagnosed with Parkinson's, with possible (and, perhaps, probable) indication of MSA. It may be the lack of a definite diagnosis that has kept me from the downward spiral, and I wonder if hearing a doctor say, "We can confirm that you have MSA" would bring me to panic and despair in ways that it has not so far.
DeleteDespite that, I have a strong desire to know: not suspect, but know with at least a level of certainty. From all that I have read, this adversary, if it is indeed mine to battle, has already won, and there is nothing that I can do to slow or halt its progression. Yet I want to know where I am headed. I want to be able to have some idea of what to expect. I want to make sure that I can provide for my family while I am still able to do so.
Ironically, I just got home from the local urgent care. A bad cold had been making the rounds of my family (first my son, then my daughters and wife, then finally me) and I could tell that it was settling in my lungs. So now I've got a mild case of pneumonia, a badly swollen eye and five days' worth of antibiotics. Little things become big with this adversary!
Last month I started blogging my journey. I think that, so far, I'm probably the only one who has read it, but I find it therapeutic. Please check it out if you have a moment.
Again, thank you for telling your story: for your candor, your informative research and the eloquence with which you put them on paper (electronically speaking).
Here's to staying out of the dark places.
Hi Bob,
ReplyDeleteFirst of all, I'm glad I got you to post again. But leave it to you to make me tear up at work! I loved the slideshow - what a life. It is a wonderful world - definitely more wonderful having had you in it.
I just finished reading Tuesdays with Morrie by Mitch Albom. Have you read it? I was too young when the media was covering Morrie Swartz, but perhaps you remember it. It talks about dignity a lot and this post reminded me of it. Even when you’re feeling especially low, just remember how many people love you and would do anything for you.
Hope your family will all be together for the holidays. From the Kents to the Pedens, Merry Christmas and all our love and prayers.
Julia Kent
Ottawa, Canada
Julia,
DeleteThank you for your encouragement. It is somewhat ironic that the original intention of my blog was to benefit others by giving them insight into an illness that they may share with me. When, in the end, I have been the beneficiary. The encouragement and well wishes of total strangers has truly warmed my heart. Certainly you among them. Thank you!
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ReplyDeleteIntegrity, too. You've got a lot of integrity in that authentic spirit of yours.
ReplyDeleteMuch love, and glad you're out there
Thank you PEN!
DeleteMy dear Bob, Thank you for sharing the beautiful video. I loved seeing so many pictures of all the wonderful highlights and experiences of your life. It gives me comfort to know you have lived such a full life and so filled with love. It is an honor to have been your friend and to know there are like minded people in this sometimes crazy world. Sending you love and Light, Paula
ReplyDeleteThank you Paula. I need all the light I can get in this very dark place. Our short time together was one of sweetness and innocence. It seems like a dream to me now. A very good one!
DeleteHi Bob!
ReplyDeleteThat was a beautiful slideshow and blog post, as always.
Like you, my mom had great presentation and verbal skills. She could speak for a long time through the disease. Even when she couldn't speak at the end, she was completely "present for duty" mentally. She would laugh the funniest way, which made her and all of us laugh harder.
Like you, she faced the adversary with dignity and stoicism. She will forever me my role model for how to face difficulty with grace.
When she knew she was near the end (we didn't), she asked her aide to call me (I was already on my way). It took her a long time, but she said "I Love You." I will always treasure her last sentence to me.
My prayers are still with you, friend.
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