On Gratitude, and Why I Am Not Writing

Mar 11, 2014 by

I’ve never been one for New Year’s resolutions. This year, however, is different.

On New Year’s Day, I was sitting with my mother watching the morning talk shows on TV. Now, anyone who knows me knows I not only don’t watch TV, but I abhor talk shows, especially the artificially cheerful ones they have on in the morning. But I was sitting with my mom, which was the important thing.

Anyway, they had a pop psychologist on there who talked about not making resolutions for the year, but finding one word that would be the word you lived by for the next twelve months. He mentioned things like courage, and self-esteem (which is really two words, but we’ll give him that since it’s hyphenated), and so on. The idea was that you thought about these words and what they meant to you when you were faced with difficulties, or a hard decision, or whatever you needed a little back-up on. I thought “huh,” and then went on knitting while my mom sat quietly in her recliner.

Not quietly. Silently. My mother was in the last stages of ALS, amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s Disease. She had no voice. Hadn’t been able to speak clearly for a year, relying instead on notes she wrote, first with a pen on paper, then electronic slate, first with a stylus, then, when she could no longer hold a pen, with her finger. Towards the end, her communication was to raise one finger for “yes,” two for “no.” But she always communicated.

She was in the recliner because the only way she could swallow was to let gravity help. She could use the controls of the chair to tilt herself back far enough to drink the thickened puree that was the only thing she could swallow. And when she needed for us to lift her to the commode, she could tilt the chair forward. But she couldn’t stand on her own. Her body had twisted into a horrible, painful knot, the strength was gone from her limbs, and she had almost no control over her muscles. Her right hand could hold a baby’s sippy-cup, or point, or raise one or two fingers, but her left hand and arm were dead. She could raise her legs a few inches, and did so, calling it her “exercise.” To the end, she still could laugh, though soundlessly, and even if her facial muscles didn’t work, you could tell she was still smiling at my baby nieces when they came over. She knew everything that was going on.

Because that is the evil of ALS. Alzheimer’s is a terrible disease, but it’s terrible mostly for the people around the victim. Most of the time the patient doesn’t know what’s happening to them. But with ALS, the body decays while the mind stays sharp. My mother knew exactly what was going on, even when she could no longer stand, no longer move her head, no longer write. The last day I saw her—the day before she died—she was only able to communicate by squeezing my hand. But she answered every question I asked.

For ourselves, we were lucky. Damned lucky. I have five brothers, all of whom were involved in Mom’s care. My oldest brother lived with her. Her sister lived with her. Everyone did what they could to make sure she was comfortable, if not happy. We didn’t have to abandon her in a nursing home. She had hospice who came in when she needed them, and the ALS Association made sure she had whatever machines or equipment or medicines she needed. A nurse was on twenty-four-hour call, a social worker came by every few days, and an old friend of the family, an LPN, came every morning to help Mom get up and bathed and dressed. We had help. We had backup. And we had each other.

And that brings me to my New Year’s word. Because only an hour after watching that TV show, I thought of my word. Gratitude.

So every day since New Year’s, I’ve tried to think of the things I’m grateful for. It’s so easy to slip into the poor pitiful me state when things are going wrong. I’m horrible about that—I tend to feel way too sorry for myself, and envious of other people who have more or better or different. Conveniently forgetting that everyone has troubles, that everyone thinks other people have more or better or different.

I’m grateful for so many things, but most of all I’m grateful for my mother. For raising me to be strong enough to live alone, and for teaching me how to be a good friend, so that I will have good friends when I’m not so strong. For giving me five wonderful, exasperating brothers, whom I adore even when they make me crazy. For loving my dad, so that when I write about love in my books I know whereof I speak. For her endless support, even when sometimes I think she thought I was a cuckoo in her nest. For teaching me to love art, and beauty, and learning. For teaching me how to appreciate things, and more importantly, how to appreciate people. For the marvelous long trips we’d take to places neither of us had ever been, and for the spontaneous side trips to places that weren’t on the itinerary. For taking us out of school to go to the zoo, or the museum, or on picnics, or camping trips. For raising six only children on a three-child income, in such a way that we never knew it.

Mom died on Monday, January 27th. Two nights before, I had a dream about her. She was at my house, helping me clean (a family joke, because she was always helping me clean, and my house is always a disaster) and we were having a conversation.  I don’t remember the subject. I just remember thinking that it was a good conversation, like we often had, about life, and books, and family, and so many other things. We didn’t always have these kinds of conversations—sometimes we argued, but this time, in this dream, there was none of that. And the thing I remember most about that dream was me thinking “God, it’s so good to hear her voice again.”

I want to hear her voice again. I miss it so fucking much.

When I saw her the next day, I told her about the dream. She squeezed my hand really tightly.

Mom had gotten sick the Thursday before—just a slight fever, and by the time the nurse got there a few hours later, she was already better, but it sapped her strength and she went downhill after that. We knew it would only be a matter of time then, because even though ALS is an idiosyncratic disease, it’s terminal. The lifespan after diagnosis runs two to five years, with nine years being the upper limit, in general. People like Stephen Hawking who live with it for years are very much the exception to the rule. And victims of that god-damned fucking disease are so vulnerable to just about everything that even the slightest infection can kill them. And does.

I wasn’t there when she died, but my oldest brother and my two youngest brothers, and my aunt were there. She wasn’t alone, and she was in the house she’d lived in and loved in for fifty-six years. The curtains were open and she could see out into her beloved garden, even though it was covered with a thick blanket of snow. She knew her plants were there, sleeping and waiting for spring.

My brother Mark said it all and said it simply, when they knew she was going. He just said “Thank you, Mom.”

I’m grateful he was able to say what we all feel. Thank you, Mom.

 

5 Comments

  1. CJane Elliott says:

    Thank you for this beautiful post. It brought tears to my eyes. My condolences on the loss of your mother. Her beautiful spirit is evident in your words.

  2. Piper Vaughn says:

    I cried while reading this. I’m so sorry for your and your family’s loss. I’m glad your mother had so much family around her when she passed and it was in the place she loved most. *hugs* I love you, my friend. Sometimes weeks or months pass without us seeing each other in person or speaking, but if you ever need an ear, I’m here. <3

  3. Angela Mallak says:

    I also cried when I read this but for a different reason. My mother died January 29th 2011. It was almost two years to date from her diagnosis. She didn’t want a feeding tube, which would have prolonged the suffering. She also was adament about dying at home, but at the end they threatened to charge my stepfather with abuse. We didn’t have very much help and he made to much to receive aid for full time help. We did the best we could to take care of her and she did have some hospice help. But with heavy hearts we brought her to a long term care facility. She died the next day. We were with her, I told her I loved her and it was ok to go, she was gone within the hour. She to had a garden and a view of it as she lay wasting away. I sometimes wished she was sick with something that would take her quickly. But, then I would have missed the two years we did have. This disease sucks so bad. She was a singer and had a beautiful voice. I too miss that the most, her voice. For years after she was gone I’d go to pick up the phone to tell her something. I also dream about her and she’s always young and healthy in them. I used to get so mad when anyone said it gets easier. It does get easier. You start to remember the woman that was your mom and not the shell of the person that this horrible disease leaves behind. I guess I just wanted to write and let you know that I truely can sympathize with you. So much more needs to be studied and done about this disease. I have come across one fundraiser for this at a store. I look forward to reading more from you whenever you are ready. Only you will know when that is! Take care of you, Angela Mallak.

    • rowanspeedwell says:

      Thank you, Angela. It was so kind of you to write and share your memories. This truly is a horrible disease and I can only pray that someday there will be a cure for it. I very much appreciate your kind words and my condolences on the loss of your mother, too. We were lucky to have all the help we had, but I’d give anything to have her back again. Bless you. RowanS

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