Wednesday, October 28, 2009

Fear and Losing It at the Library

My small town has a truly amazing library for a city of its relatively small size. When I lived nearby for about eight years, I was in and out of here all the time. Sitting here this afternoon, killing time until a doctor appointment, I am struck at the parallel between the progression of my illness and the decreasing frequency that I have visited what was once a favorite place.

Today, I came in with my laptop and was playing scrabble against its all knowing electronic brain until a few moments ago. I am sitting on one of the 'comfy' chairs (for whose body?) near an electrical outlet. To get into the chair I parked my wheelchair sideways and slid onto the seat. Now, I have come to realize that I am not sure how I will get back into my chair. The seat cushion is only about 3" higher, but I am extra weak due to my recent flu bug (hopefully, if I'm not home tonight, someone who reads this blog will know where to find me). 

The library is a constant reminder of things I can no longer do: reach above the third shelf for books or magazines making it darn near impossible to browse; open the three doors leading in to the building; pick up books without dropping them; or remember the dewey decimal number for the book I am searching for. 

I have to head to my appointment soon; the library's bathroom isn't accessible because of a heavy oak door and I don't trust my bladder much longer. This is the first time I have been out on my own for weeks. With the challenges of accessibility to buildings and bathrooms, the mental fogs I can experience, and the waves of fatigue that strike without warning; I rarely leave home alone. Quite the reality for a 44 year old woman. 

I used to pass this library on my way to and from work; I used to be able to open doors; I used to know my way around the bus system; I used to know how to navigate without thought. Now, I can become lost walking my dog in my neighborhood. And the result of all this change is, I rarely visit the library. 

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.

Wednesday, October 21, 2009

I am sick, sick, sick & it isn't MS


I am down with a stomach virus and feeling rather 'icky.' Please keep me in your thoughts and prayers. My hubbie & I are set for a weekend away this Friday--but, unless I am much improved, I won't be going.

I'll post as soon as I can,


Monday, October 12, 2009

It's o.k., I don't mind, No really...

Envy is an odd thing to live with and when it dances with Jealousy the music of my life can take a bitter turn. MS chips away at my nervous system and bits of me stop working, become weaker, and, without warning, add another odd symptom to my list of complaints. And then, as in the recent 'loss' of my left little finger, the entire mourning process of MS loss begins again. How can I accommodate this? Is it worth a trip to the neuro? Is it permanent and how pervasive? Most importantly, what will my life be like now with this latest loss. Can I still open the toothpaste tube or hold my hairbrush or zip my jacket. The little finger does much more than I realized. It isn't completely weak--I can move it and at times it is stronger than at others. 
So where do E&J fit in to the distracting, discouraging, and insidious weakening of a pinkie? It is like the old groaner, "Doc, will I be able to play the piano? She responds, Yes, if all goes well." You reply, Great, I couldn't before"  So one little digit won't cost me the ability to play a 12-string guitar or knit intricate sweaters. The envy and jealousy I feel isn't about a particular ability someone has that I once did; although I would give just about anything to have my career back or glide off on a bicycle or tend a vegetable garden. OK, so maybe there is envy and jealousy here. When I hear someone kavetch about their busy schedule with work and kids and church and and and.... I confess to dancing a few laps around the ballroom with these two emotions.
My experience with these evil twins is subtle and insidious, and most importantly, steps on the path I take to isolation and loneliness. How can 'normal' person understand living life with the relentless assault of MS loss. 
As a result I put on my 'happy happy joy' face and tell you it isn't so bad. I focus on the practical losses and tidy up my emotions. MS has its own language and is almost impossible to translate into english. I can show you my droopy finger or draggy left foot or tell you why I use a wheelchair. But, I can never adequately express the deeper emotional impact or the internal world of life the MonSter. 
What is a finger worth, I have nine more. No, actually, my pointer finger went south years ago, and my right thumb requires a hard plastic brace to work at all. So, that leaves me with seven, more or less. Will another start to fail today-this minute, or tomorrow? And, what about my toes, my eyes, and on and on. Every inch of me is run by a complex system of nerves and as I understand it, can be affected at any time. 
The impossible task is to live with knowing that any and everything could be impacted at any time. And somehow build a life of safety and security on top of this unreliable foundation. For me, the deeper foundation is the surety of God in my life. Without that, I don't know how I would live with the envy for and jealousy of the life I no longer live.