Sunday, April 15, 2012

After the storm and over the hill, memories fade

In my study/writing music wheelhouse is Mumford & Sons’ album Sigh No More. The entire album is rich as an experience. Every song for me, though, reminds me of my grandmother I lost this past August. I’m certain it has to do with the Celtic sounds, the scruffy lyrics that reference long-forgotten battles, or maybe just the musicality of the whole thing. There’s one particular song, however, that doesn’t just tug at memories of Grandma Dillon. “After the Storm.” It’s my Alzheimer’s song.

Alzheimer’s Disease (AD) has claimed two of my grandparents. I’ve seen older loved ones die of cancer, old age, cardiovascular disease and strokes. I can say without a doubt, Alzheimer’s is the shittiest disease I have ever laid witness to. My father’s mother and my mother’s father both suffered far too long from this disease before they finally went “home,” at least physically.

I’d like one day to go without thinking about this fucking disease.

I guess getting that tattoo in October wasn’t the best idea if I just wanted to stuff everything I feel about AD down into a hole until I have to inevitably deal with it again. I don’t want to think about it because it clouds and colors the memories I have of my grandparents. My grandmother gobbled up knowledge like some people breathe. The impact my grandmother had on my thirst for knowledge cannot be contained in this post. I’ll save that for my dissertation.

And after the storm,
I run and run as the rains come
And I look up, I look up,
on my knees and out of luck,
I look up.

My grandmother’s funeral card sits above my desk, just out of my line of sight. Whenever I struggle to find a word or the next sentence, I tend to look up (science proves we all do it!). Then I see my favorite photo of her, accompanied by the Irish prayer. Then the stupid rain comes and an eventual tear sheds. Sure, I could move the prayer card, maybe put it away so it doesn’t trigger a memory. But then I’d have to give up hot tea, my study sweater, knitting needles, card catalogues, and any music with a violin.

Night has always pushed up day
You must know life to see decay
But I won't rot, I won't rot
Not this mind and not this heart,
I won't rot.

Because we are rational beings we have to ascribe some sort of reason to why things happen. I guess it’s one of those cognitive behaviors that separate us from the chimps and cockroaches. What purpose could Alzheimer’s possibly serve? Perhaps to live and create and revel in memories as we create them. If the purpose to life is to live, then we must live. Without such darkness, seeing memories fade into some distance Grandma and Grandpa always seemed to be staring into, we never see those bright moments. The sun cannot come up unless it has set.  You must know life to see decay. But my memories do rot in my heart. They rot with the stink of Alzheimer’s. They rot when I think of the last time I spoke to my Grandmother. I got to tell her I was going to start a PhD program. She was so far gone (she died the following month) that the only thing she understood was pretty much the word doctor. She won’t be there to see me walk. She won’t be there to hear about all the stuff I’m learning. She won’t get to hear about the books I get to read. There was only one memory I wanted to create with her. I didn’t get to.

And she sat there and rotted. This amazing woman that raised 6 kids, two not even her own. She married the love of her life and they lived life exactly how they wanted. My grandfather rotted in the same way. A man who helped get us to the moon, who could figure any mechanical device and fix it or even make it better. He is the smartest man I have ever met. He couldn’t figure out how to swallow when he died.

And I took you by the hand
And we stood tall,
And remembered our own land,
What we lived for.

The last time I saw Grandma I just sat and held her hand for hours. Her skin was still so soft, paper thin. That was the only way I ever remembered her skin, so it was kind of comforting that at least that hadn’t changed. But in that freezing, hospice room under the stench of her rotting tumor that eventually killed her, I tried my damnedest not to secure that as my memory. We listened to her favorite Brandenberg concertos, and while she slept I told her all about my kids that she had met but didn’t remember 5 minutes later. I told her how much I wish we had talked about raising boys instead of artists and seashells. I told her how much I learned about life whenever we were on the boat. I told her I was who I was because of her, no regrets.

And there will come a time, you'll see, with no more tears.
And love will not break your heart, but dismiss your fears.
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.

I don’t think there will be a time when there won’t be tears. My children were robbed of the opportunity to learn and grow with these grandparents. I promise you both Grandma Dillon and Grandpa Chernick would have lived to be 100 if it weren’t for Alzheimer’s. As stubborn as they both were, they would have beaten any other disease with a big bat of kickass. 

And now I cling to what I knew
I saw exactly what was true
But oh no more.
That's why I hold,
That's why I hold with all I have.
That's why I hold.

All we have to cling to whenever someone dies or leaves our lives, is our memories. But too often those memories are formed not through the actual experience we have had or created together. But through the accessing of those memories. If Grandma hadn't died of Alzheimer's, but instead say skin cancer, with all her faculties, would I have these same memories. Would I still "know" what I "know" now?

I saw exactly what was true. At her memorial service in Big Pine Key, a few of us spoke of our memories of Grandma. Some I had heard, some I hadn't. Some I knew if she were there she'd be giving that stern look with pursed lips that everyone knew the smallest and slowest would get the brunt if she caught their collar. Grandma lived to make memories, she really did. She didn't do anything small or slight, even though she was both things. She was an only child raised by a single mother (how many of those back then?). She had all boys until a teenage orphaned niece came along. I saw not only in that memorial service, but in the last moments I got to spend with her what I knew was true. She was graceful, quiet, peaceful, and loving. Alzheimer's couldn't rob her of that much. 

I will die alone and be left there.
Well I guess I'll just go home,
Oh God knows where.
Because death is just so full and man so small.
Well I'm scared of what's behind and what's before.

I know, physically, my grandmother did not die alone. She was surrounded by people she loved, who strived to make her as comfortable as possible. But she did die alone, mentally. A part of me wishes I didn’t see her for the last time. That maybe my last memory could be the year prior, when she was still better. There were at least flickers, then, of memories. She remembered my father so by association remembered me. Or the Spring prior to that when we walked on the same beach together as we had 20 years before. Sure it was different sand and surf, but it was still the same.

Because death is just so full. I often say that death is beautiful in Autumn and Alzheimer’s. My mother talks of how privileged she felt when she got to be present at my grandfather’s death. Maybe that’s what has given her some peace that I cannot seem to find in my grief. Maybe death is a relief for those with Alzheimer’s as well as those who love them. And then in their death, we conjure up those memories all over again. In our grief, we make an emptiness full. It’s made full in a way we don’t at 9:30am in a meeting or at 8:45pm when the kids just won’t go to sleep.

Well I’m scared of what’s behind and what’s before. I know, somewhere in the terribly pessimistic part of my heart, this disease isn’t through with me or my family. Whenever I prayed through both Grandma and Grandpa’s experiences, I heard God say, “it’s in preparation.” I would pretend that aching anticipation meant it’s preparing me to live my life with my husband and my children to the absolute fullest. Just ask anyone, I try to cram as much into my kids’ lives as I humanely can. New festival? We have to go! Want to jump in that puddle? Have at it. New exhibit at the museum? Let me get my shoes.  But what if it’s not that. I have to somehow learn from these experiences with this terrible, shitty disease because it will break me when the next diagnosis comes.  I’m not sure my soul is strong enough.

And there will come a time, you'll see, with no more tears.
And love will not break your heart, but dismiss your fears.
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.

And love will not break your heart, but dismiss your fears. It’s the very love you hold for someone with Alzheimer’s that breaks your heart. You can’t do ANYTHING. Nothing. No medicine, no therapy, no prayer, nothing. It’s like watching someone on the train tracks and you can’t do anything to stop the train or move the individual. Actually, that metaphor sucks. Because it implies it’s quick and striking. It’s nothing like that.

And there will come a time, you'll see, with no more tears.
And love will not break your heart, but dismiss your fears.
Get over your hill and see what you find there,
With grace in your heart and flowers in your hair.

Get over your hill and see what you find there. On that funeral card is an amazing picture of Grandma Dillon. It’s actually my favorite (besides the one with the Velcro helmet-ball game). It’s Grandma and Grandpa Dillon, in their shorts and sandals, on a mountain somewhere in Colorado. It’s well before any hint of the disease. She has such a genuine smile on her face. She wasn’t a big smiler, something we actually talked about. Grandpa Dillon did enough of that for her (at least around me). They’re in love, in God’s country, bathed in light, surrounded by amazing blues and greens and clouds. It’s how I want desperately to remember them.

When I hear this lyric, and see that picture, it’s Grandma telling me to find that apex in my grief. It’s okay to sit on top of that mountain of grief, of memories that never were. I can still hear her voice in my heart and I’m terrified for the time that comes when I won’t. But eventually I’ll have to step over that hill. I’ll have to eventually see what’s on the other side of this grief, of this experience. Right now I feel like that’s when the door shuts on my time with Grandma. That’s the moment when I truly live my life without her. The grief is comforting in a way because it keeps her here. When the grief leaves me, when I’m over that hill, what then? Will I be able to see it with grace in my heart?

So for the time being, when this song comes on, I pause my typing or stop walking or slow my pace on the treadmill and choose to experience it. Sometimes I look like a damned fool at the library or gym silently crying through a song no one else hears. And I’ll know that moment when my heart hears it differently and I’ll know I’m over that hill. Until then, I hope the wind is at my back and the sun on my face. 

1 comment:

  1. Beautiful post sis, I miss them both a lot. I guess since the last time I saw them was uncle colon getting married that I don't feel the same sadness as you or rather I don't feel it as sharp. I'm not sure if I should count myself lucky, or regret I didn't have the chance to enjoy them as much as you do. But one thing I will always have is the memories of big pine key burned into my soul. I hope ad never rips that from me