Friday, September 18, 2009

Learning to live with disappointment...

...and seeing the big picture...the reward later on.

Seems like my psyche has had a lot of disappointments lately.

I'll look up "disappoint" in my old "American College Dictionary," dated 1948.

To fail to fulfill the expectations or wishes of (a person);
2)to defeat the fulfillment of (hopes, plans, etc)
thwart; frustrate

A craniocervical fusion set for April 28 at The Chiari Institute in New York, only to be postponed due to situations there beyond my control.

That surgery re-scheduled for June 3. Thwarted.

A trip to Bethesda, MD to see a new doctor, an appointment that seemed filled with bright hope for the future. Cancelled by the doctor a week before I would leave to go see him.

A visit from my mother who lives 3000 miles away (and whom I've not seen in four years) and my sister who lives in Hawaii, I guess another 3000 miles in the opposite direction. They planned to meet here, something they've never done. I was full of expectation about their visit. Over the months since I'd bought my mother her first class ticket, I primped and preened our house and garden as much as my health would allow.

I looked at everything in my environment through my family's eyes. I planned on how to fix up a comfy room for my sister to stay in, and I made small changes to our guest room as I remembered my mother's wishes and likes, and her needs.

Suddenly, yesterday, a week before they were to arrive, we, as a group, agreed to cancel the trip altogether. My mother was filled with anxiety about leaving her home, and about flying. It seemed best to remove those anxieties and hope for a time in the future when we two daughters can fly back to her home and spend time with her that will be more relaxed for her.

I thought, as I suggested the change of plan, "No problem. I'm glad with just being home in my routine without company."

But almost everything I do reminds me of my excitement, my expectation of their arrival. How they would "see" my home, how much I knew they'd like it. It will take some time.

I'm still working my way through my grief at the loss of my appointment in Maryland, at the unexpected loss of a surgical plan, a future that would be a promise of less pain and more mobility. I know from experience there is nothing I can do to hurry myself through this process.

I put on a brave face and tell people I'm okay staying home and learning the lessons God has for me, about trusting Him fully. I talk to myself in convincing tones that I am so much happier NOT heading into a hospital operating room, not needing to become acclimated to long, titanium rods reaching from my upper skull to my C5.

I tell myself that, but deep down, my emotions are still linked to that hope I carried for so long. Not just the 3 years that I was a TCI patient, but longer than that, back to when I first contacted TCI...back to when I studied about fusions (and continued to do so even up to as recently as a month ago). And that link doesn't instantly dissolve in the bitter liquid of rejection (from doctors). It must be stronger than that.

At my age, I know that this feeling will pass. I know that I will get into a new direction and I'll be fine. And that I'll look back and know "it all worked out for the best." But right now, I'm still grieving that.

And my sister and mother not keeping their commitment to come visit (even though I know I was the one who suggested the cancellation) seems to irritate that same "nerve" of rejection that has been riled up by 3 neurosurgeons lately.

How fragile are we! How tender our spirits as we move from day to day, playing the part of the strong and stolid adult, making wise decisions, speaking the right words, speaking of Faith and "Letting go and letting God." When deep inside, we are frightened children so in need of comforting arms.

For me, it's a doctor I need. One who validates all that I've been through, and who promises to be there for me through the tough stuff.

A friend of mine just reported back to me on her visit with the same neurosurgeon I'd hoped to see in Maryland. Her outcome was so much different. He gave her honor and respect, he gave her a full evaluation. She was astounded by his wisdom and experience and he validated all of her pain and suffering with various diagnoses that he has plans with which to help her.

And I am honestly happy for her, but there's a hurting place inside of me where I feel like the kid that didn't get picked until last for a ball game on the playground. Only this is a much more important game, and not really a game at all.

I can't help wistfully thinking, "I wish I'd been able to go and come home with that validation, with a surgical plan so that there is hope for the future. With a caring neurosurgeon."

With a stoic demeanor, I hide these childish emotions. I have Faith that all will work out for me. I have Faith that what happened to me is what was meant to happen. I know, from experience, that I will go through these emotional valleys (especially when they are part and parcel of Post Traumatic Stress Disorder).

I know that at some point in the near future, my heart and my brain will wrap itself all around this, and I will forget the disappointment and despair I felt from abruptly-changed plans and unintentional rejection.

Given out by our local tire store, my calendar on the wall shows a New Hampshire-type, September scene, the old white farm house with black shutters, the red barns and outbuildings, nestled in a green valley surrounded by colorful maples, oaks and fir.

And below the picture, an inspirational note I'd not seen before:

Change is difficult but often essential to survival.

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