Several years ago, my aunt Tina was diagnosed with ALS- Amyotrophic lateral sclerosis. I'm copying a section of ALS from Wikipedia because it explains it more succinctly than I can, and sets the stage for why I am telling this. "Amyotrophic lateral sclerosis (ALS), also referred to as Lou Gehrig's disease, is a form of motor neuron disease caused by the degeneration of neurons located in the ventral horn of the spinal cord and the cortical neurons that provide their efferent input. The condition is often called Lou Gehrig's disease in North America, after the famous New York Yankees baseball player who was diagnosed with the disease in 1939. The disorder is characterized by rapidly progressive weakness, muscle atrophy and fasciculations, spasticity, dysarthria, dysphagia, and respiratory compromise. Sensory function generally is spared, as is autonomic, and oculomotor activity. ALS is a progressive, fatal, neurodegenerative disease with most affected patients dying of respiratory compromise and pneumonia after 2 to 3 years; although some perish within a year from the onset of symptoms, and occasional individuals have a more indolent course and survive for many years."
I don't want to talk about the way she lived after the diagnosis or how she died. It is one of the most painful things I or my family have ever seen. I hope you never ever have to deal with this. But the reason I am writing this is because I want to remember who she was before this was ever a part of her life. And this is who she was.
She was lovely. She had beautiful curly light red hair. She was my mother's much younger sister. She had the best laugh and I still remember her voice, even if the memories of exactly what she said have long since passed. She couldn't talk at all in the end. She was vivacious and lively. She has two boys who look so much like her. My mom told me this story that when they were growing up they (she, my Uncle Jay, and Aunt Tina) had a cat. They also had a staircase with a banister that overlooked the living room. The couch sat directly beneath it. They would throw this cat (or drop him) on the couch to check and see if it would always land on its feet. I'm laughing and crying imagining this event and the three of them participating. My aunt went to the University of South Carolina where she met her husband Tim. She was really smart. She had this enormous capacity for love that she always showed. For christmas and birthdays she would often give us Barnes and Noble gift certificates- like gold to me! She had handwriting exactly like my mom's- the most perfect cursive script you could imagine. I have this postcard she sent me from San Francisco- back when postcards cost 15 cents to mail. It's on my postcard wall and I pulled it down to write this: "Hello Lauren, I hope that you are feeling all better! That nasty, old cough and ear infection should leave you alone. Papa and I miss you very much. Say hi to your Mommy and Daddy for me. I love you! 'Come see you!' Love, Tina P.S. Can I hold the baby?" On the front she wrote "BP Car Wash- it won't hurt you!" I was terrified of car washes when I was little. Terrified. I love this postcard and though you may not know me, this is who she was. Loving enough to write a two year-old a postcard. It may have started my love for mail! Who knows. Imagine my mom (picture of her on a previous post) with longer curly hair, laughing with my mom over some random thing the two of them shared. My mom loved/loves her so much. The perfect sister relationship. Anyway, she was amazing. It may not have a lot of specifics and of course I wish she had not died so young. So young. But they say that once you put something on the internet, it lasts forever. So may this last forever.
May this also raise some awareness about ALS and other neurological diseases. Check it out on wikipedia or other websites and participate if you can in research, funding, and walks or runs to raise awareness. It's a worthy cause for something that isn't as well known and something so mystifying. 95% of cases have no known cause. 5% are due to a hereditary genetic factor. A lot of people don't know what it is, but check out this fact, also from Wikipedia: "ALS is one of the most common neuromuscular diseases worldwide, and people of all races and ethnic backgrounds are affected. One or two out of 100,000 people develop ALS each year." Just a little soap box thought.
If heaven has the internet, I hope you read this Aunt Tina and know that you are still loved, remembered, and thought of often, as you would wish to be thought of. You are one of the strongest people I ever knew. You were admired and revered by everyone who knew you and if I have half of your strength going through life, I'll be set. To everyone else reading this, remember your family, the people you love the most- alive or deceased, know that they are special and tell someone else (even on a blog to a bunch of people you don't know, or a few friends) how much you love them, and remember them in some way today. I love you Aunt Tina.