Thursday, 19 November 2015

I Made Katherine Cry

I made Katherine cry last night. This morning too. Well, actually it wasn't really me so much that made her cry as it was ALS. Usually Katherine is almost sanguine about the changes going on in my body. Her comment, often, is "you know this is going to happen." Sometimes, however, even she succumbs to the cruelty of this illness. She stops to think a bit about what is happening to me, what will happen to me. When she does, she cries.

Last night I was getting off of the couch, doing the transfer to my wheelchair. Katherine is the person most intimately aware of the subtle and not so subtle changes which have happened to me over the last year, particularly in the last few months. She has seen the inability, seen the loss of strength. She has seen her role in my life increase, as my ability falls.

Last night she was observing my loss of energy, how my general energy level had fallen in the last little while. It's true; if I let this disease get the better of me, the chronic exhaustion rises full and fast to the fore. Last night was one of those nights. As we were dealing with that, the subject of what might happen next was also part of the conversation.

As Katherine usually does in moments like this, she turned away from me so I wouldn't see her tears. She knows all to well how her distress impacts me; she wants to save me from that burden too. She went off to have her shower, came to bed, and burst out sobbing. When she finally could talk, we said little. I knew, I know. We slept, hoping for a better day today.

When we woke up, she did her morning routine, once again making me breakfast in bed. She does this as a treat for me, a wonderful treat. I sat up. She sat in my wheelchair. Then she started to cry again. She told me, through the tears, that she was crying because I was going to die. I comforted her as best I could; neither of us can deny this reality.

It is terribly unfair, terribly tragic that Katherine should go through so much of her life single, only to meet me now. It's not that I am such a bad catch; it's the passenger I bring along with me. Here she is, in love, really in love, for the first time in her life. And it's with me, someone who is guaranteed to die soon, too soon. Here she is, dedicating herself to a man who can do almost nothing in return, nothing to repay her kindness, generosity, passion, compassion. Her she is, with me.

That makes me cry sometimes too.


  1. Such a sad, but truthful posting. Thank God there's people like Katherine who value the real thing.....One cannot choose who they fall in love with. This speaks volumes for both of you.

  2. I thought of this quote the other day when I read "I Am Failing". I wanted to share it there but couldn't get my hands on it at the time:

    "ALS has its own gravity, strong enough that each repeated orbit is always just a bit smaller, a hair closer to the sun.”

    Those are the words of another PALS, Dr. Bruce Kramer, from his book entitled “We Know How This Ends: Living With Dying.” They describe the gradual but inexorable failure of his body. After reading this post today I was reminded of another essay by Dr. Kramer, responding to a PALS who was planning to commit suicide in order to have a good death. I think this also describes your and Katherine's situation:

    "How’s this for a good death? It is predicated on a good life, one in which we take the opportunities given to make the way a little better for others.

    "It is looking for the good in each gift of a waking day.

    It is understanding that a good life is easy when everything seems like it is going your way, but the proof of goodness comes when conditions are most adverse, when the deck is stacked against you, when the most mundane of behaviors might require a day’s worth of energy."