Tuesday, September 13, 2011

Optimism, Pessimism, and Realism...

I used to think of myself as an optimist. Invariably no matter the circumstances, I would look to the possible good outcomes and orient my thoughts and actions that way. In looking back over some of the posts on this blog for the last number of months, I realize that the optimist is giving way to something else. And it ends up permeating other aspects of one's life. This is not surprising I suppose given how dominant Meagan's disease is in our life - it is the topic of conversation (when one includes talking about treatments, side effects, appointments, etc.) and the primary activity driver (driving to and from appointments, waiting, watching over her, etc.). I really don't have a life outside of the disease, even though it is she that has it, and I find it pretty hard to believe that any caretaker could remain positive over a significant period of time as the disease takes its toll and the downward cycle continues.

Clearly the turning point was when the disease went to her brain and she had the subsequent seizures and that shut her down from possible clinical trials. That really dictated the end game, and shifted the focus to disease control for as long as possible, while hanging on to some decent quality of life. The corollary shift in mental perspective really was a first for me - seeing not only that defeat was on the horizon, but that having a "positive mental attitude" really accomplished nothing. Sure, I've tried to buck her up each day by being positive about the day in question - making sure to focus on the "now" and what is good about each and every day, but candidly, it's a self and joint deception that rings a little more hollow as each day goes past. Especially when our "now" becomes more and more limited and narrow due to the impacts of the disease and treatment on Meagan.

I really want to focus on the good aspects of things and often I sit writing and think about what can I say about Meagan and how she is doing that is positive and good. I cannot top her own words; her past letters to all her loved ones illustrate beautifully all her incredible qualities. Her courage, grace, love and core personality are unbelievable. But on a day to day basis, things aren't going well. The disease marches on, we face new scans and treatments every two weeks it seems, and the toll on her becomes more and more evident each day. With her most recent mental step down due to unknown factors (brain radiation impact, chemo-brain, overall medications) life becomes a lot smaller and simpler and less positive.

We had a conversation the night before last, when she had her old sharp, empathetic and incisive thinking senses about her (it waxes and wanes). In so many words, she asked about and wanted to know how I would remember her - as her old self or as this new person with so many deficits and changes in personality and appearance. It was particularly driven home by her frustration at not being able to write me a final letter. It's at moments like this that the optimist in me arises and I'm able to step back and look at the situation from the broadest of perspectives. My answer was not meant to give her false support or prop her up in some positive fashion or to allay her concerns. It is genuine. I told her that I have 24 years of cards and notes from annual birthdays, holidays and anniversaries which have her words to me (and which I have saved) - aside from the memories of conversations and events - so that any one last letter is not as important or crucial as the entire body of work illustrating her sentiment toward me. And that even though she has changed, those changes do not impact my overall feelings and perspective relative  to our entire relationship. Because I can close my eyes and bring up the memories and feelings of her in happier days and times, when she was in her full glory, and it is those perspectives of her which I will carry forward.

So as we march forward on this last leg of the journey, however long it may take, I realized I need to march more with my eyes closed.

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