Saturday, October 24, 2009

My Gobsmacked Week

In the Disney version of Sleeping Beauty, the princess is imprisoned in a castle consumed by a thorny hedge. She sleeps blissfully unaware that her world has become a prison. No matter how diligent I am, my own garden is steadily being overrun with the insidious spread of choking vines. Every inch, every crook and crevice is slowly being invaded by the viny tendrils of multiple sclerosis. 

This past week was a series of gobsmacked* times where I had no choice but to confront this damnable illness and how much it impacts my life. When I stay safely in the protective bubble of my house, where everything is carefully thought out to meet my physical needs, I can almost pretend that this limited life of mine is normal. Particularly if I carefully turn the lights off in the room where I store my preMS dreams and desires and accept as satisfactory a life lived in a protective bubble.

Last Saturday should have been a day of fun adventure. My hubbie planned for weeks for a Fall outing on a historic riverboat. He called ahead and was assured that the boat was accessible. In the kind of soaking rain that only a cold fall day in Oregon can produce, we ventured an hour north to the park and made our way to the boat landing. The boat may have been accessible, but the gangplank that descended at a 45 degree angle from the high riverbank down to the river, certainly wasn't. Just like that our fun adventure was over. It isn't logical or correct, but I felt like a dead mouse in a swimming pool. The couple we are with and my husband put on brave faces as we try to come up with another plan. But really, it is my chair, this illness that has ruined our day. And, who I am and MS are so intertwined that I can't untangle them.

Just a few years ago I had finally found my career niche--fascinating work, great coworkers, and a growing sense of place in my professional field.  After a year of working while undergoing Novantrone chemo therapy and seeing little therapeutic improvement and then feeling my grip slowly slipping on the complex world of grant development and management, I had to face that I could no longer work. I loved my job and still have intense dreams about it. Just when I think I have moved past mourning for this profound loss, something happens to push me right back into paralyzing sadness. On Tuesday I received emails from two women who I used to work with, one filled with chatty news of cross country travels to conferences and the other on the busy world of planned retirement. While I am thrilled to hear from these friends, their words unintentionally bring me to tears. Days filled with naps, reading, symptom management, medical bills, and peeing the dog in no way measure up to what I have lost.

To make up for the lost boat adventure, the couple we went with invited us to spend this weekend with them at their vacation cabin. Normally, we can't afford weekend getaways, so their invitation was especially welcome. And, what could go wrong, after all I was simply trading one indoor environment for another. Last Sunday night I came down with a stomach virus. After a mostly sleepless night I woke to my hubbie as sick as I was. We settled in for a day of shared misery. By nightfall he was well on his way to recovery while I seemed to just feel worse. By Wednesday, with no relief in sight, we had to consider that a weekend trip was unlikely. Thursday morning, after four days of stomach pain, a low grade fever, and the increasing weakness on my left side, it was abundantly clear that our planned getaway was not going to happen. MS causes everyday illness to hit me twice as hard and exaggerates any of my disease related symptoms.   

One of my favorite books is Web of the Chosen by Jack Chalker. In it, a pilot crash lands on an alien planet, at first he is bewildered by the strangeness of his new world. Slowly he is literally transformed into one of the alien inhabitants to the point that what was impossibly foreign becomes all he has ever known. I don't want to lose all I was and the dreams and plans that unfolded from my previous life, but maybe, if it made this MS defined life a little easier to bear, it wouldn't be so bad.

*It means “utterly astonished, astounded”. It’s much stronger than just being surprised; it’s used for something that leaves you speechless, or otherwise stops you dead in your tracks.


Stuff could always be worse said...

you are such a good writer and sorry about the brickwalls that you ran into,on your trip. Seems like there is always something unplanned, I guess we have to re-arrange our plans?

I know the feeling of losing who you used to be, I try to put my life in stages of working, married, kids, etc. I do not know any other way for me. I try to make my life count now with MS.

However you learn to cope for you is great, you are doing a great job now of writing this too real MS and life.

Peace Be With You said...

Janine, the neurological deficits associated with MS are reported and familiar. What I hear less about is the perennial grieving we live through as losses compound on losses. I’m an emotionally strong and stable person, but this illness’ constant revisiting of loss and unceasing adjustment to new normals sometimes get the best of me. You may find interesting a post I wrote on the subject: