Tuesday, 27 May 2014

The Ship Keeps Sailing

The last 24 hours or so have touched every corner of my emotional fabric, reached into every nook and cranny and crevice of my feelings, poked every sore, pinched every soft spot. I've dealt with fear and pain and sadness and joy, worried for myself and my family, wondered what I have done wrong, congratulated my self on what I have done right. All in all, ALS continues to be an exhausting roller-coaster ride, with higher highs and lower lows than are possible to imagine.

Yesterday morning I awoke to the Palliative Care Nurse calling to set an appointment with me; she is coming this afternoon. Yesterday afternoon the care workers came to exercise my body and clean my apartment. My friend Mike came over and we did a few mindless chores and errands. Then, as day wore into evening, I got word that another ALS friend of mine, Robert Boulton, from Edmonton, had died. This was unexpected, except that death is never unexpected for PALS.

I was immediately gripped with sorrow and sadness, knowing that another life had been taken too early. He was a young man, much younger than me, diagnosed with ALS on May 10, 2010, only a year earlier than my first symptoms. Instead of withdrawing from his diagnosis, he embraced it, attacking ALS with all the enthusiasm which was naturally his right up to his last moments, and all the strength that he had remaining. Yet the disease gave him no quarter, no respite, no grace; it stole his strength and his life, as surely as it is stealing mine. 

I went to bed last night wrapped in sadness and sorrow, pummeled by the day and by death. You see, other PALS have died in the last couple of days too. In fact at least one dies each day from the online ALS groups. It is the nature of this disease. Not even Bob expected to outlive the illness; he knew his reality just as I know mine. Yet we all live with a willing denial of death. Were it not so, we would all quit far too early.

Then, at 6:41 AM this morning, I was lifted from slumber by the message alert on my phone. It was my Mary daughter announcing the arrival of my new grandson, Quinn. He and his mother are both healthy and, at 9 lbs. 10 oz., I suspect he will do very well. The next generation continues to grow.

From one to the other, one gets off the ship, another gets on, and the ship of life keeps sailing.


  1. Congratulations Richard. the sailing metaphor is beautiful. You have such a creative mind.

  2. As it sails out of sight for some, it sails into sight for others. It is both beautiful and tragic.