My first year at the ALS walk! |
This weekend I will be participating in the Greater New York Chapter for ALS.
Sorry, I am going to have to do some copy and pasting because it's way too complicated to explain without messing it up. (Amyotrophic lateral sclerosis (ALS), often referred to as "Lou Gehrig's Disease," is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.)
Now you know what I'm talking about. My grandmother died from this, and one of my favorite cousins was diagnosed with it about 5 years ago. My cousin Nell is a tiny, feisty little woman. I had the privilege to hang out with her in the summers in the Adirondack Mountains.
I only have fond memories of her. I truly looked up to her, she was my hero, I wanted to be her when I grew up. She had the sweetest little voice and the best laugh. She was always smiling or telling me to "stop whining!". She rode horses, climbed mountains, rock climbed, wind surfed and had a small dog that looked like a rat named "Mini". I hated this dog.
Nell LOVED this dog, and the dog could do no wrong. She smelled, she hated me, and she growled whenever I went to pick her up. Horrible beast. Nell would greatly disagree with this. The dog only did it when no one was looking.
Nell was married to Barry- an Irishman (with an accent!) tall, dark and handsome type of fellow. Also athletic, and he played the tin flute. Celtic style. The two of them were fun together, they had a great time romping around the mountains.
I knew them before they had kids. Then the following summer Nell showed up pregnant. My only memory of this was people telling horrible stories about babies born on toilets... and Nell's little face went grey and her eyes went wide, and then people stopped talking about it... after all this was her first baby out of three. No need to tell her about the horror involved in birthing. (It truly is the number one worst pain... a woman will ever feel)
The following summer, Nell and Barry rented a house up the street from Toad Hall (the cabin that we stayed in) and this time, they brought a friend. His name was Brendan and he had a huge head. Their son. Cute as a button. I was maybe about 10 at the time. I was so excited to have this little baby around. Nell taught me everything. I learned to diaper, feed and walk with a backpack full of baby up a mountain!
Last year we had Barry over for dinner. He remembers this time fondly. He said it was one of his happiest moments in his life. It was a magical time- everyone was happy, time was endless, and everything was one, so harmonious.
That was the last summer I saw Nell and Barry and Brendan, and that dog.
After that, my parents were splitting up and again my mom was looking to dump me off with someone so she could deal with her marriage. She sent me to Washington D.C to go hang with Nell, Barry, Brendan, and now.... Connor.
Connor was one of the most beautiful babies- he was so happy, and perfect. This was a time when I was starting to dislike children greatly. Connor changed that for me. Nell would change his diaper and the minute that thing came off his hands and legs would go to town... he loved being naked. Such joy. He would giggle and coo.
I was in the living room with Connor one day and he climbed up on the chair and fell off the side hitting his head very hard against the side table. He had an enormous lump on his head... but didn't cry. I was in awe. He was the ultimate baby. I dreamed of one day having one as perfect. I didn't. ( just kidding? ).
Nell ran a daycare center out of her home. Parents would drop off their kids and Nell would take us to the zoo, or we would go for long walks.
Something had changed though. I noticed a dullness. That laugh was gone...
I especially noticed it when Barry came home from work. He looked dark to me. Vacant. My parents were having problems, and now I was super aware of other marriages. From such a young age... I knew that something wasn't right.
That was the last time I saw Nell and spent time with her and the boys. She moved to England, got a few horses, got divorced, and came home with the boys in tow. She moved to her hometown and bought a 13 acre horse farm and worked at a local college. She had worked hard to get her life on track.
Nell had disappeared from my life, we no longer went to the mountains in the summer, and all I knew was that she had three sons now. One day my mom got a phone call and on the answering machine was a tiny high pitched voice. "Hi Val! It's Nell... her voice was shaking. "Please give me a call back, I just found out that I have ALS, I would really like to talk to you" her voice was cracking and sounded as if she may cry....she hung up.
"Oh my god! " my mom was beside herself. "What's ALS?" "Lou Gehrigs Disease, same as your grandmother!"
(My mom came to the states to be a private nurse for my grandmother, she knew very well what ALS was)
Devastating.
We went to go see her at the ALS walk four years ago. She was walking, but needed a walker, and sat in a wheelchair for long trips. She was talking and laughing.
The next year, she was in a wheel chair, no longer walking, talking a little bit but slurring and was barely understandable.
Last year, she lost her voice due to having a tracheotomy from pneumonia, (a killer for ALS patients... but not for Nell) Not only that, but she got the trach out. She's still so strong. And in Nell fashion refuses to give up.
Nell, Brendan and I on top of Owls Head. |
This year, we will soon find out. It's horrible to watch the decline of a loved one. With Nell, I can do it, because she is an inspiration to me. Every day that I complain about something stupid or get frustrated that I can't fly... I think of Nell. She's a bundle of energy and life confined to a wheelchair and still manages to write, laugh, and smile.
So, with that... Nell was back in our lives for a short period every month when she writes a column in the daily newspaper, READ NELLS WRITING HERE. and once a year when we go to see her and her wonderful family in New York for the ALS walk. Please Donate to help me raise money for ALS research here!
Nell should be an inspiration to us all. Long live NELL!
Nell with her three handsome boys. Brendan, Connor, and Emmet |
Nell in true fashion, always smiling. Such a wonderful soul. |