I was in the garden this morning picking the last of the tomatoes and misjudged a step and twisted my ankle. Its a strange thing to be sitting on the step, covered in mashed tomatoes thanking my lucky stars that it was nothing more serious. When you are a single mother, suddenly, a sprained ankle takes on a whole new meaning. I can sit here for a little while with ice on it, take lots of ibuprofin and hope it feels better. But I still have to take my son to the orthodontist this afternoon. Of course as a single mother, you can’t help thinking, what if it had been more serious? What if I had been knocked unconscious. Would anyone even know?
I thought of that on Monday when I was in Vancouver talking to a group of caregivers. They each had a loved one, a husband, a wife, a son, a daughter with ALS or Lou Gehrig’s disease. Many of the victims were surprisingly young. 39, 40, 42. Younger than me. I spoke to one mother whose daughter was afflicted leaving her to deal with her 3 young grandchildren, all under the age of 8.
At the same time, I am reading an odd book called “The Last of the Duchess,” about the final years of Wallis Simpson, the woman who caused the Prince of Wales to abdicate from the throne. In the book, she is being cared for by a attention-seeking lawyer, who keeps Ms. Simpson in a reclusive state unable to see her friends, completely incapacitated and unable to ask for what she wants. The lawyer revels in the attention that she gets as Mrs. Simpson’s only voice. It is so sad to think of this once-glamorous woman in the clutches of this unsavory character.
ALS is a hideous disease. Your mind is clear while your body shuts down. Eventually, victims are left in the care of a loved one or a professional caregiver, unable to feed themselves, unable to move, unable to talk. one loses even the ability of determining the order in which to eat food. It left me with the question, what would I do? Who would be my voice?
My talk to the caregivers was well received. I was nervous talking about grief to a group that had not yet had their loved one die. Until I remembered that the Kubler-Ross stages of grief were developed for people who have received a terminal diagnosis. It was only later that Ms. Kubler-Ross applied them to the grief experienced after the death of a loved one. I think they already knew that they were grieving on so many levels. I hope that my confirming it helped them, just a little. I talked about the anger, and how it was normal. But most of all, I talked about the silver lining – the opportunity that grief gives you of seeing what you are really made of, of realizing how precious and short life is, of enjoying what you have.
One of the most memorable moments of the day for me, was when one woman, who was obviously very overwhelmed in the care of her husband, who didn’t know whether to nap or do chores when the professional caregiver came to give her a couple of hours break, said, “the problem is, I never want to leave him. I want to enjoy every moment I have left with him. We have become closer now, because of this than at any time during our 20 years of marriage. I just want to spend all my time snuggled in his arms.”
Silver lining indeed.