A day in the life.

Lou Gehrig: The Iron Horse. Dorothy Pietila: Grandma.

I cried today. I don’t cry too often. And I’m not talking “oh my gosh, those people are so in love and I’m so happy for them and now they’re having a baby and a puppy and the puppy is running after the Budweiser horse because he loves him, and now they’re BFF’s forever *tear*”. Because THAT happens on the daily. I mean, I cried. It’s rare, unless I’m frustrated to the point of explosion, or stressed to the point of total annihilation. But this afternoon, I laid down on the floor to stretch my back. Then right in mid-stretch, came the waterworks.

The past few weeks my Facebook feed has been FILLED with friends and family members taking part in the Ice Bucket Challenge for ALS (Amyotrophic Lateral Sclerosis) or more widely known as Lou Gehrig’s Disease. It’s a severely debilitating disease. It takes your personality, and slowly attacks every muscle in your body. You can’t eat, you can’t breathe, you can’t move, you can’t talk. All five senses are typically still intact; with no means to enjoy them. All of that and for most, a mind that could still crack a whip and recite every President…if you could only speak. Being held hostage in your own body. This ultimately leads to death. When I see these posts, I think of Grandma Pietila. I miss her. A real heart-hurt miss.

I was around 12 when she died from ALS and I remember being so confused as to why she was so sick. Why she had this tube thing breathing for her, and eating for her. And why her voice was a computer generated man’s voice. I didn’t know what was going on. It was scary. I can’t imagine what she was feeling, knowing that her grandkids must feel so awkward around her now. She was literally a shell of her former active self. I can still remember her in the hospital bed, in the den. I don’t remember how much I visited her, but I don’t think it was enough. The computer voice would ask me questions, and I’d be so shy, I don’t know if I answered.

What I most remember about her are smells or foggy memories. I think my favorite was playing “restaurant”. The door to the bathroom in Grandad’s house swings; sort of like a Saloon or in our case, a restaurant kitchen. We would get out all of the crazy amounts of McDonald’s food containers that Grandad would collect and make great pretend meals in the kitchen/bathroom. I also remember going to garage sales with her. Camping trips. Picnics. I remember looking at her big, poofy, colorful square dancing skirts and not being able to wait until I could wear one of them too. I remember rye bread and bologna sandwiches. One day a few years ago while looking for lotion, I opened a bottle and the smell came at me like a train. She wore it. It’s both weird and awesome how smell can have such an effect on a person – years (20 some years!) later.

When she died, I don’t remember going to her funeral. Or maybe I blocked it out. Sometimes I think I needed that closure. I think I needed to see her peaceful and happy again. Of course, I didn’t know that then. I miss her terribly some days. And I’m not sure why most of the time. I was 12. But the days that pop up, like today, make me wish she was still here. Grandad will be 92 this year. Would she still be alive now and keeping track of (throwing out) his McDonald’s styrofoam pancake containers? Would they still be square dancing?

ALS is always in the back of my mind. “Experts” say that it’s not known to be highly genetic. It is actually quite rare for a family member to be diagnosed with the disease.  But I can’t help but wonder any time my finger starts twitching. Or I feel awkward or clumsy on a run or walking. It’s scary. As scary as cancer or heart disease in my little world of a brain. I wish we knew more about it.

In my kitchen I have a picture of my cousin Anni, myself and Grandma in the yard of their house. I don’t know what we were doing, but it looks like we were having fun on a New York summer day. Probably one of the many picnics outside with the family. Playing croquet and hanging out. I love that picture. It’s how I like to remember her. And “us”.

As of today, it is reported by www.ALSA.org that $15.6 MILLION dollars have been donated so far (compared to $1.8 million last year). The recognition that this disease is getting through something as simple as pouring water over your head and THEN donating even $10? Awesome. I know there is still a lot more research to do, and money to be raised. Lou Gehrig’s Disease/ALS is unfortunately a term that is in my internal vocabulary, so it’s not new to me. They are words I grew up hearing and knowing, “Oh, my Grandma had that.” When you experience it, especially when you are young,  it tends to just be a part of your every day. Like my cup of coffee, my drive to work or my next run. Like someone with cancer, depression or even someone who has defied the odds and become an Olympic athlete despite an amputation. It’s something that you’re either working through, or working with. Routine. Granted, I’m the family member. It didn’t happen to me. But it also did. “It” took away a very important person to a young girl. It is something that I should be an advocate for. I need to become a bigger part of ALS research; for her. Because I’m HERE.

Thank you so much my friends for posting, accepting and donating. I know my time will come soon enough…

Of all of it, I mostly just appreciate the good cry for her. I needed it.

xoxo,

T

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