Question Series #1: One More Thing

I sent out an email a while back to those who subscribe to this blog and asked them for their questions. This is the first in a periodic series where I will do my best to answer these questions. If you have a question for me, please ask.


Question: If you could do one more thing – go someplace – what would you do?  A trip to Europe? Disneyland? Ride a bike?  Just curious…  maybe just go around that block without falling out of that chair.  


My Answer: 
I've read this question at least a hundred times and it rattles around in my brain like a frozen pea bouncing across the kitchen floor. After the, 'do one more thing...' I add, 'before MS started chipping away bits and pieces of my body.' 
My first thoughts are grandiose ones, such as walk the Great Wall of China, go scuba diving in the Galapagos, or river raft through the Grand Canyon. The kind of things that go on the list of what I'll do after I win the lottery. It isn't long before I move to more middle of the road things that I used to be able to do and find myself yearning for: dancing at the local folk festival; camping in the Ochoco mountains; planting a vegetable garden; or throwing a dinner party.
I imagine that most people have an extravagant 'bucket list' that is more likely to fill dreams than actually happen. And, through time, or age, or habit, everyone has let things slip from their lives that used to give them joy or pleasure.
When I drill down past the extravagant dreams and the middlin' regrets and losses, I am forced to face the real answer. If I could do one more thing, I would wash my hair. I would drive to the grocery store and buy our groceries. I would cut my own meat. I would...this is where I lose it. I've let go of grand schemes and mourn the loss of the things that used to fill my life, but it is the relentless eroding of every little thing that is too much for me to dwell on.
I no longer have the life I wanted. Now, I know people want to point out how wonderful and worthwhile is the life I have. This makes me so angry. I can't do the simplest things. Some days my fingers are so clumsy I can't open the paper around a straw. Most days my husband has to slap on my deodorant and close up my bra. And on and on until the 'cannots' crowd out the 'cans.'
I wonder what is next? Forks are a challenge and spoons seem to roll through my fingers and cutting food into bite size pieces is almost impossible. Am I up for facing the day when I need to be fed? Will I wear a bib with grace or rancor.
These past weeks I have wrestled with how to live life with MS. If from here to the end of my days is going to be filled with a steady erosion of every little bit of my life, can I handle it? I don't want to be miserable all of the time. I know that it isn't easy to be my husband,my son, or my friend. Being in my world takes work. I don't want be a project or a mission or a burden. And yet, to survive, I have to find a way to be all of those things.

That's Good...That's Bad

 Everyone has something--some 'thing' that makes living tough: be it illness, a wayward child, a debt load, or a deeper pain woven into ones life. Mine is obvious, from the big ugly wheelchair, to the braces on arms and feet, my challenge can't be hidden.I try to imagine if each person's own particular challenge were as visible as mine, maybe small neon lettering floating over ones head, 'too much debt,' 'widowed,' 'lonely' 'hate my job' then my own wouldn't seem as remarkable. 
This morning I woke up after a night of little sleep with intense arm pain and fatigue that was deeper than ever. I wanted to roll over, pull the covers over my head, and pretend I didn't exist. After an early morning nap (who naps at 8am?) I woke up muzzy headed and feeling no better. Again, I could think of no compelling reason to get up. It struck me that I could be miserable in bed or I could be miserable and sit in the warm spring sunshine on my porch. With water, a book, and sunglasses I settled in. My arms were hurting, I felt like a limp noodle, and then I noticed a cotton ball cloud slide by overhead and two birds soar past, and a neighbor began mowing their lawn. A few minutes later I heard the distinctive whirring that could only be a hummingbird. Magically suspended in mid air by my honeysuckle vine was the most beautiful bird. A thimbleful of scarlet and ashes, sipping from the sunset orange and yellow of the sweet smelling blossoms. It came back to visit 5 or 6 more times. Wonderful!

The 'Anna's' Hummingbird

The choice to seek and experience and express joy is simply that, a choice.

 In indelicate contrast to my beautiful morning on the porch, the other evening I had one of those moments that is both maddening and humorous (in retrospect, only) My hubbie and I were watching TV. MS causes my colon not to work quite right. It is called 'low motility' a fancy way of saying that the thousands of muscles that cause food to digest are slowed down and don't work well. In practical terms that means I spend far too much time being painfully constipated with bouts of diarrhea and bowel incontinence and as a result spend far too much time in the restroom. Back to the other evening. I grumpily left the living room and headed to 'my throne.' As I sat and worked on a puzzle, there is no better way to say this, I kept noticing a horrid odor. I don't see well in partial light and, hoping it wasn't me, finally decided to transfer to my chair and call my hubbie to come inspect. It was then we discovered our old dog had had an accident on the rug in front of the toilet. We checked my wheelchair wheels (all clean, whew) and then decided to throw away the rug. A few minutes later we settled back on the couch. I could still smell the smell. When I moved back on to my chair to see what was going on I discovered that the couch cushion, my chair cover, and the back of my pants were covered in dog mess. Apparently, while in the bathroom, my pants had rested on the dog pile. No rested is too nice a word, more like swam in it. What a nasty mess! Not the way I had planned for my evening to go.

It seems easy to say one episode was good and the other bad. That one brought joy and the other unpleasantness. In reality, as snapshots of life, neither caused any change in my circumstances. I had to make a deliberate choice to experience the joy of a spring morning on my porch and the 'messy' evening just happened. I will always share real estate with progressive MS, my 'something.' And, every moment, I have to make the deliberate choice to not be defined by it.

I am sorry to say...

What is wrong with me? If desire could be the catalyst for positive change in my life—I would be channeling Mary Poppins. I want to feel joyful, be thankful, and act full of life. Instead, I am as flat and unchanging as the Yukon River in February.
Of course, I know what is wrong with me; I have progressive MS, the root cause of the fatigue, pain, and depression that seem to define my every minute these days. Of course I know I am loved and wanted and that I contribute to the planet (blah, blah, blah) I can't seem to break past what I know intellectually and really give a damn.
If I try to separate out what is physiological, that is caused by MS and what is situational, that is the reality of being 45 and in the situation I find myself; it is much like trying to sort a basket of sewing needles by the sharpness of the point. At the end of the day, I only know that my fingers are endlessly sore from being pricked.
I haven't written in the past couple of weeks. Honestly, I haven't had much to say. My life seems unchanging and uninteresting. I worry that my 'audience' will tire of my tiresome life.
In rereading the previous words I can't help but feel that I am at once both too frank and too without hope. Yet, when I take a clinical assessment, I am being honest in the options left to me.
The silver chord that holds me together is my faith in a Heavenly Father who leads me to eternity. Yet, this promise is the future. Today I must brush my teeth, put on clean underwear, and be out for a series of appointments. Is the day coming when I can no longer do this? Is that day today?
I don't have any answers. I have 1 hour and 50 minutes to paste myself together. To somehow overcome the nerve pain that is like a living thing in my arms, put aside the fatigue that lays over me like too many layers of heavy wet blankets, and slip on the 'public' me. Beneath it all I cling to my faith and knowing that I am known all the way down to the whorls on my toes, by a God who loves me and accepts me as I am:

^{From Psalm 119...}

²⁵ I am laid low in the dust;

preserve my life according to your word.

²⁸ My soul is weary with sorrow;
       strengthen me according to your word.