A Late Night Conversation Poem by Bill Galvin

After two solid weeks of progress, of gains on physical therapy machines, of confidence building, of standing, walking, forward thinking… a day of despair, despondence… and fear.
Fear of the future; the place where this ALS takes us; the ignominious helplessness.
The doctors told her a while back to live day to day; focus short term. But how is that possible, really? But the suggestion is a good one, since some ALS patients sometimes require anti-depressant therapy, as well.
She's done a good job so far. And today, a day when we were quietly celebrating a brighter, more mobile future when a power wheelchair was fitted to her for a test drive, some decorations fell off the Christmas tree. I had heard that she had already had some "moments" earlier, and had teared up a few times.
I saw it in her face, when the assistive technician spoke about the options that he was anticipating for her and that she would need down the line… meaning when the disease got worse and limited her movements even more. I wished he hadn't said that, even though it sounded harmless enough, and he was well-intentioned. And it did not escape her, on this day when doses of reality were too numerous to offset the positives of the last two weeks.
We did see the upside after he left. We talked about the increased mobility and subsequent dignity that she would gain over a standard wheelchair. We joked about breakouts and getaways.
But there was something else. After I had come home, and after her brother and sister-in-law had left, she called about 8 and we talked about the power wheelchair and our web site that I was working on and timelines of photos that I was scanning for uploading to it and what was on TV. We said good night, but I told her to call me, as always, any time she wanted. I always make sure her phone is charged before I leave, and she makes sure that it is within reach when nurses tuck her in for the night.
Around eleven, she called again. This time the small talk was a prelude to "I am scared."
"I know, Honey. It scares me, too."
"But, this is going to turn ugly."
What do you say? You can't deny it. Or whitewash it.
"Baby, we will make the best of whatever it becomes. You have a big, loving family and a bunch of loving friends around you, supporting you. Let's not think in negative terms. Let's say when things get different, not ugly. And let's do what we can to minimize the losses. If you can't file your nails the normal way, then maybe I can design a contraption to help you do that. And I'm sure there are many tools designed for you out there right now, we just have to find them."
"I can't even wash my own face, blow my own nose. I'm afraid I'll be a burden."
"I cannot imagine what an independent woman like you must feel like now. But we will do what we can to live as normally as we can, with dignity. I ask that you continue working through the pain and try to regain as much as you can that ALS did not take from you. These next weeks are so important. When you get home, we'll get in touch with the ALS Society of MA right nearby in Norwood. The company that supplies the wheelchair also has loaders to place it in vehicles, so we can travel a bit. Maybe a lot. We will not limit ourselves. We'll check out all options. Get you out in Nature again."
Her sobbing quiets and she feels some relief. "Do you think so? " "You bet I do."
In the back of my mind, I am asking God to give us plenty more meaningful time before she cannot take any more of the suffering. I am entrusting, as I often do in pressing moments such as these, that the proper words and attitude channel through me and to her in a way that gives her (and myself) honest, and not false, hope.
She questions why… why her… why this, of all things?
I answer that if there's something in God's plan, we just don't yet know what it is.
"Be brave. Be strong. Work hard. We have a future still, just not what we could have expected. We will work out ways to get around the indignities and go forward."
She thanked me. She asked if I'd be in tomorrow. "Only missed one day out of 39. I'll be cooking you some lunch and bringing it in."
We loved and said good night once again.
And from my own secret, hidden, and dimly lit back room, I too ask God, "Why this? Why her? After all she has been through in her many lifelong struggles with medical complications? It's just not fair."
And I sit, sleepless, at 3am, writing this… waiting for an answer that I know is not coming.


Update:
The above was written a week prior to March 28,2014.
Deb had been fitted and road tested for a motorized wheelchair. On the night of March 27, Deb was suffering painful spasms, and her house doctor at rehab suggested a powerful drug, Baclofen, that controls them. He asked her next morning if it worked; she said yes, but her head was a bit muddled. He prescribed one every 6 hours. I went in to see her and she was uncharacteristically tired; her physical therapy was not up to par. She fell asleep at 5pm, so I went home.
At 9pm, her sister Denise called me from CA to say she was worried after Deb called her to complain about a nightmare that she was dying. By the time I got there at 10: 30, Deb was in and out of consciousness. The last thing she mumbled to me was a thank you for coming. I thought her agitation was a reaction to the med, but it was the sleepiness that was the side effect. I had looked it up on line before driving in and told nurses to stop it; but they had just given her the fourth one that day. Later we discovered that it is cleared by the kidneys, and Deb's function has been down to 10%. So it was a toxic build up. The doc thought it was cleared by the liver.
At 4: 30 am, she had slept for about 2 hours, and misreading this as a positive, I went home. At noon, I was called and told they could not rouse her, and were sending her to Emerson Hospital. She was out for 2 days, then in a wakened, but delusional, state for 5 more. During the early stages of coma, she would alternate agitation, crying out in pain, and muscle contracture of her one good arm with sleep. The longest sleep cycle we counted was 4 minutes on that Sunday. When out of the coma, she did not know reality, was very paranoid, and I noticed she lost use of that one good arm.
Family watching over her were very, very pained seeing this, but doctors assured us the Deb we knew would be back.
She did come out of it; but in a very weakened state. It seemed that the ALS had advanced about 3-6 months on her. Her hand and arm dexterity on the right side was now gone, so the powered wheelchair option was out. Emerson transferred her to Mass General, the hospital that had diagnosed the ALS a couple months before and sent her to rehab. She recovered enough to get her appetite back, but now she could no longer do the little things that gave her some satisfaction, like, scratch her nose, feed herself, use a phone. She was truly totally dependent on others now, and this bothered her a great deal. She said someone there told her that the progression would be rapid, and that there were places that she could be sent to for hospice. She was very upset, and I promised her that I would take her home and care for her there as best I could.
I and her sister, Denise, who came from CA to be with her at this momentous time, met with medical professionals who explained the difficulty that taking her home would present to myself, the primary caregiver. But I promised Deb she would see her garden flowering, and enjoy as many of the home amenities as would be available to her.
She has seen those blooms. (8-30-2014)