ALS Awareness

Today, I want to share again a post about my friend, Tami, who died from ALS: A Kidd I used to know.

May is ALS Awareness month. The ice bucket challenge won’t likely make headlines. Or maybe it will. There will still be people struggling, fighting, dying. But awareness generates money and money supports research.  I am #ALSAware

A Kidd I Used to Know

I had written that blog post title on May 23, 2008, but never wrote more. She was gone by then. Taken way, way too early by a horrendous disease that slowly forced her body to shut down and stop functioning.

Tami had Lou Gehrig’s Disease, also called ALS. Call it what you will, but it is one of the most horrifying, frightening things I have ever seen. I cannot fathom, by any stretch of the imagination, how Tami managed to keep smiling and joking and reassuring her husband and two children – a beautiful girl and sweet boy with Down’s Syndrome. God, she was AMAZING.

Tami wrote a blog and never told her husband about it – According to T.  To this day, I don’t know if he knows about it, but I desperately hope that he does. I don’t have any relationship with him, so I wouldn’t be the one to tell him. He never responds to my emails or letters. I check the blog periodically – not sure why. Maybe it just makes me feel closer to her. You can feel her spirit when you read it. Well, I can.

My sister and I flew to Atlanta to visit Tami in November 2007. She died about 10 days after we left. She had known that she didn’t have much time and was saying her goodbyes. I spent there three of the most beautiful and most heartwrenching days of my life.

We would cry, and Tami would crack a joke to cheer us up. We slept on the floor of her kids room, because she didn’t want us to leave to stay in the hotel we had reserved. We connected her to some big crane-like contraption to move her around – get her in and out of bed, onto the toilet, into a shower. I bathed her, and she joked with me to make me feel more comfortable as I scrubbed her with flowery-scented bathwash. She wanted to make ME feel comfortable.

Tami was my sister’s friend, and I had only met her a handful of times. But we clicked instantly. We had matching senses of humor, and she was one of the easiest people to talk with that I had ever met. I’m not exactly sure how we reconnected….if it was while I was living overseas or when I came back to the US and moved in with my sister. But as she became more ill, my sister talked with her more often, and I did as well. Then, we started emailing and had great fun with that. I was hooked. On her.

Our email relationship became fast and furious in the months before her death. I was planning my wedding and emailing her about all the dirty details, including how my then-fiance’s husband didn’t really like my simple wedding dress. She would write something silly and encouraging in response. I wish I had all of them.

6/29/07: I love the pics on the blog.  I want to hang out with you and your friends.  So hip, cool and always enjoying yourself.  What fabulous friends to take the two of you out and “realize” that you are the Queen!  and of course Mikal the King.  I am so happy for you. Enjoy all that this experience has to offer.  You truly have become one of my favorite people.  I love your energy, wit, zealousness and slight bohemian ways!

7/5/07: I still remember meeting u…..   at her (my sister’s) apartment w/ crazy Amy.  I liked u instantly.  I loved your hair.  all those long curls/  oh I wanted them.  Plus, I was stranced by your relationship with each other.  I forget sometimes there is a brother.  U guys r friends and that always made my heart sing.

8/4/07 (8 days before my wedding):  Hey girl.  Just a quick thinking about you email!   sending the positive sane vibes to ya! Keep me updated.   Did the mom like the dress any better in person?????  lol. lumi

Nearer to her end, we were texting a bit, until she stopped being able to type.

Tami had planned her death, and it was heartbreaking. But she knew what would be right for her and damn anyone who would tell her differently.  She wrote on her blog on Aug. 18, 2007:

My battle with this disease is going into year 8. I am tired. Plain and simple. Tired. And if I come home w/ tubes projecting from my body, my children will know the end is near and freak. They were here to watch the end of my mothers life…… I just want to go to sleep one night and let nature rule. Of course, it will be a planned night, so that my children will be spending the night somewhere else, enough pills taken to relax a weakened respiratory system to a point they simply stop working. Nothing gross, no gasping, no drama……. just a beautiful peaceful drug induced sleep to help aide my body to relax and let my soul ascend.