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If another person asks me if I still play my saxophone I might lose it.

This Time of Year

For years I’ve kept a red and white “No Parking” sign from the Vermont City Marathon.  In January of 2005 I moved into my first apartment and it was there, taped in the window of the back door.  I had seen them before, lining the streets on Memorial Day weekend, but I stopped and took a closer look.  Its temporary paper date read May 25, 2003. 

In May of 2003 I had just returned home from college and had never participated in, or watched the VCM. Running a marathon was unfathomable to me, but when I found out my brother planned to run his first marathon, I had no doubt.  I hardly gave it a thought at all.  Running wasn’t my gig; I didn’t know much about it, but it didn’t take much thought to know that Nick would not fail. 

Now, when I find out someone is running a marathon (and especially their first marathon) I am impressed and happy for them.  It takes a commitment and an attitude of strength to both prepare and succeed on race day.  I feel prideful for them.

In 2003, I thought, “Oh, you’re running the marathon?  Cool.  That’s not for me.”

I’ve watched several marathons and seen many a familiar face battle through, most reaching the finish line, but I didn’t go in 2003.  I don’t know what I did that day, but I didn’t make it downtown.

To no one’s surprise, Nick finished the marathon.  He ran the 26.2 miles in a time of 2 hours 46 minutes and 21 seconds.  He came in 19^th overall, 22 minutes behind the winner.  He was the 5^th Vermonter to finish and a month after his 21^st birthday, finished 3^rd in his age group. 

I never asked him what it was like, never showered him in praise, and I wasn’t there to greet him at the finish.  I’m not even sure I was impressed; “Nick did well in the race” was not a story to me. 

Twelve days later I woke up and he was gone.  

Part of My Life

I go to a “clinic” appointment every three months.  It used to be every six months.  I take the elevator down a flight and check in at the desk before making my way to the waiting room across the hall.  If I am on time I don’t wait long.  I am greeted with a smile and more recently a hug and walked down the hall to the scale.  It is a large scale meant to accommodate a wheelchair.  I am offered a hand as I step onto its steel base.  My weight is read and we compare to previous visits.  If it has stayed the same or increased all is well.  If it has decreased I am laughingly told that I will be hearing about that later.  And I do, from nearly everyone.  I will be reminded once again that people who are slightly overweight have much better success with ALS. 

Notice I did not say, “In their fight with ALS”.  I do not look at it this way.  As far as I can tell, my doctors and nurses do not look at it this way.  Occasionally people tell me to “keep fighting” or some variety of this.  If I knew what that meant; how to fight ALS, I would.  Outside of eating lots of “calorie-rich” foods, stretching, and light exercise, the latter two of which are mostly to maintain flexibility rather than fight any sort of deterioration, there is little I can do.  I try to keep a positive attitude; that’s how I fight.

I sit in a small windowless room lighted by office-building fluorescent tubes covered with a colorful, wispy-clouded blue-sky piece of plastic.  The room resembles the average doctor’s examination room except that instead of the counter-high exam table, it is equipped with a foot-pedal operated, bench-level padded table.

The room opens into a large open space where a number of separate areas, mats, and machines are dedicated to providing a variety of physical therapy activities.  I always wonder what each person is doing, working one-on-one; some walking awkwardly, some lying on mats, others riding stationary bikes.  I imagine each is recovering from some injury, or hoping that a bit of physical activity might help them maintain some abilities in old age.

I stay in the room.  There is a paper beside the wide, wheelchair accessible door.  On it appears my name along with a list of my visitors.  Each crosses off his or her name following our session.  My day is long, six or so hours on average.  I see a nurse, occupational therapist, physical therapist, social worker, a representative from the MDA, speech therapist, respiratory therapist, palliative care “ist”, nutritionist, spiritual guidance “izer”, and a neurologist.  Excuse my jokes; I’m not always sure of the proper terminology. 

I don’t always see them all.  Sometimes, in the interest of time and collective sanity, I am able to avoid at least a couple of the following: MDA rep, palliative care-ist, respiratory therapist, and spiritual guidance-izer.

They come see me one at a time, in no particular order.  They ask questions; how am I doing with this or that?, have there been any falls?  That’s a big one, falls.  They don’t want me getting hurt.

This is of course after I have returned the pre-clinic questionnaire I am emailed every three months.  At first this was administered over the phone, but after accepting the low likelihood that it would be completed in this fashion, (I didn’t answer or call back) email was suggested as an alternative.  The questionnaire includes 24 questions ranging from “How is your speech?” to “How many pillows do you use at night?” I use copy and paste.

They ask about my medications.  Am I still on this and that?  Am I depressed?  Have I tried an antidepressant?  What vitamins am I taking?  Am I drinking lots of water?

My visits to clinic are really a checkup in every sense of the word.  Each person who comes to see me is checking on how I’ve progressed.  I am asked question after question and tested in multiple areas.  They test my strength; legs and ankles, shoulders, arms, and hands.  They take my blood pressure and my pulse.  They test my lung capacity, my ability to chew and swallow, and how I do with liquids, both with and without a straw.  They ask me my height every time.  

They are comparing me to previous visits, charting my weight, strength, flexibility, breathing, and less scientifically, my attitude.  I am told by most all of them to be careful with one thing or another.  I am made aware of the typical pitfalls.  I am constantly told, by people who have seen the disease, what it is like.  Usually I can see the value in their experience, sometimes I want to explode.

We discuss new trials, new drugs, and new studies on old drugs.  We say things like, “I read something online…” and get the standard, FDA-approved answers.  We search for something new and are told, “There is not enough research”, “It will cost a lot”, and “It may do more harm than good.”  We are deflated.

They ask if I am having trouble with eating, or typing, or rolling over in bed, and they try to offer creative solutions.  I shudder at most of them:  devices to help with buttoning a shirt, opening a jar or using a pen or pencil; silverware with bigger handles and braces to keep your feet parallel to the ground.  I am shown catalogs filled with “independent” seniors and brought samples to take home and try.

This part makes me sad every time.  Accepting something new is never easy, and for me the acceptance never stops.  But I can’t skip forward; I need to keep the acceptance moving as slowly as possible. 

When it is over we rejoice in that fact alone.  We leave with a new piece of advice, a new danger to be mindful of, and a clearer picture of what lies ahead.

There are no solutions to my problems, just half-assed work-arounds.  Some doctor’s visits bring a sense of hope; not these.

On the bright side, at each appointment I have my mother, and now Hilary at my side keeping me company, showing an interest when I don’t, and supporting me all the time.  I am lucky for that.