If I never see Ireland

On July 31, 2013, I was diagnosed with ALS.  This was not a bombshell; we have been thinking this was a strong possibility for a few months now, as the doctors struggled to determine what was causing my right side weakness.  I had wondered how I would react when a doctor actually said “it looks like it’s ALS,” and I think both Paul and I took it well.  Stoically, perhaps, although tears were shed by me when I tried to express how the only real sadness is thinking that I will miss Caroline growing up.  Even now, that can bring on a wave of sadness.

ALS (amyotrophic lateral sclerosis) is a wicked disease that slowly robs you of the ability to move your muscles voluntarily.  Your senses and your mind remain intact, while everything else shuts down.  When I think about this, and I try not to too often, I feel like it’s the worst thing that could happen.  Then I work on myself to get some perspective.   People are faced with difficult challenges all the time.  Cancer is a wicked disease that knows no boundaries and has touched the old, the young, and everyone in between.  Cerebral palsy robs children of an easy childhood.   COPD and asthma steals your breath away, literally.  Violence robs us of people suddenly.  ALS is just one other type of disease that, while admittedly terminal, is only limiting if I let it be.

When confronted with a terminal diagnosis, people often decide to do things they never have done but might have wanted to do.  My brother went skydiving with his son while fighting the cancer that was to kill him shortly afterward.  Other people take trips, write books, visit family.  Each person’s journey to the end is as personal as they are, and as variable.

I do not know how long I have left on this planet, but not one of us really knows, terminal disease or not.  In the end, if I never take that trip to Europe with Paul that I have wanted to, or see the Chinese Wall in the Bob Marshall Wilderness (or the Great Wall of China, for that matter), if I am able to see beautiful sunrises and sunsets, lovely days of blue skies, tremendous thunderstorms that remind me of Nature’s power, rainy days that refresh the land, and a soft, quiet snowfall, I really have seen the best the world has to offer.  If I see children play and hear their unrestrained laughter, and can still listen to the music of the world and my family’s voices, I will be happy.  Even if I never see Ireland, if I see the faces of the people I love (and I have been fortunate to love a lot of people), I will be content. 

Death seems so dramatic when you aren’t faced with it, but I have found that, now I am given an endpoint to my life, I realize I will just continue doing those quotidian things that I have always done, as long as I can, and it really is okay.  I have no regrets, and I think of the poem Father Dick recited at our wedding long ago at Georgetown Lake:

“I have loved, and I have been loved, the sun shone sweetly on my brow.

  Dear life, I am at peace, dear life you owe me nothing now.”

 

(Okay, okay, we know that's an awkward wedding poem, and perhaps far more apt for a funeral, but you have to know Fr. Dick to appreciate it.  He gave the best wedding sermon!)