Friday, December 23, 2016

Warning: The raw, real stuff

I am having a very difficult time seeing the positive these past few days. Even when I do the things that typically would make me happy - blogging, listing things I am grateful for, having lunch with my parents, dates with Adam, visits from friends, seeing my school friends and students, shopping, spending time with my kids - the happiness is fleeting. And then I go back into myself. Thinking about all the awful things that are going to come in the future. Or the wonderful moments that are not going to happen.  My body is failing me, more often than it was even a week ago. A friend I hadn't seen in over a month told me my voice is starting to change. Crap. I thought it was, but I was kind of in denial.
I desperately want to be happy all the time. I desperately want to positive all the time. But that is just not reality. At least not for me. And then I fall into this feeling of guilt. I actually feel guilty for feeling sad. So many people are doing these INCREDIBLY kind things for me and my family. I feel this unrealistic self-expectation to be happier because of that. I know, it's crazy. Every one of my friends right now are saying "Deb - really?! No one is expecting that from you." I know that. It's my own thing.
Adam is now dressing me and helping me shower. He is helping me get into bed every night, and out of bed every morning. He knows how to set up the wheelchair so I can get in and out easiest. My parents and Adam chauffeur me around so I can stay active. I am losing some control of my bladder for which I take a medication. Last night I fell asleep without taking the medication. So sucked. My crying and laughing have become more intense, so when I do both I often sound a bit manic. I keep thinking that I might want to take the medication to prevent that but I think I want to cry and laugh intensely. It keeps me human. It keeps me feeling.
I have so many questions that remain unanswered. I have asked them. There are just no answers because every PALS is different. There is no formula. When will I start having respiratory problems? When will I lose my voice?  Will I completely lose my ability to bear weight on my legs?
Honestly, the respiratory issues scare the shit out of me. I have this very strong fear of not being able to breathe. You know when you are watching a movie or television show and they show a character being choked or under water? I can't watch it. I can feel my throat starting to close up in empathy for the character. Is it like that?
I have recently joined a few online support groups. The information I have received is helpful without being scary. Some of it is actually kind of funny. The PALS I have met are kind and supportive. They are all at different points in the disease. Some have just been diagnosed. Some have been living with the disease a long time. Many are somewhere in between. Most of the time, unless people tell you or you see a current picture of them, you don't know that they are on breathing apparatus or have lost use of their hands or voice. Technology has provided many with the opportunity to express themselves in the written form long after their hands or voice don't work.
Today I found out one of these PALS has passed away. Died. From ALS. I had seen some of her posts and the fact that she passed came as a shock to me. Her writing made her seem so alive. She was so alive. And then she wasn't. She isn't. I didn't know her. We had little communication. Maybe none at all. Honestly, I don't even remember. But now she has died. And it became real. This is what is going to happen to me. I am a PALS and I will eventually die from this horrible disease. I have a voice. I have limited use of my hands. But I will die.
Some have suggested to me (and I have suggested to myself) that why am I spending time focusing on the dying rather than the living. I do focus on the living. I want to focus on the living. When you know you have a disease that there is no cure for, how can you not focus even a little on the dying?! And add to that me being a control freak, of course I am going to focus some on the dying. I need to organize it as much as I can!
I warned you. This is raw, but real. It doesn't mean that I am unhappy or sad all the time. It just means that my body is reminding more often than before, "Heh, you have ALS."


  1. Your writing helps me understand. Thank you for continuing to teach. I love you.

  2. Debbie, I saw the article about you in the Lawrence Gazette. I'm wondering why I saw the article. I never read that little paper but I had a reason I needed to kill a little time so I picked it up as it had just arrived in the mail that morning. Sometimes I think I was once Jewish as I have always approached newspapers, books and reading from back to front. So I picked up a bit of your story at the end of the article and got more and more interested. Okay - start at the beginning of the article now Mary!

    I had to know more so I went to your Blog and your FB page. It took me a second to realize if I wanted to start at the beginning I had to scroll to the bottom and the beginning of the blog. I've been reading it for three straight days and just now finished December 23. It was like reading a great book that you didn't want to end. I want more.

    You write so well (Sarah got that from you) I feel like I know all of you and your family. I have known three people who had ALS. All three were bright, determined, selfless fighters and I was proud to know them and I already feel so proud of you.

    I was interested in your essay on why you think people are inspired by you. You couldn't see it. You inspire people by allowing them to join you emotionally on your journey. We see your strength and determination as well as you all to human responses which include ups and downs.

    I feel lucky to have found your story and will think of you every day praying for the best possible outcome. I will look for more writings and maybe try to friend you on FB in a few days after you've read this?

    Btw, I live in Lawrenceville and happen to have figured out where you live. You have the most beautiful Kwanzan cherry trees in front of your house, I've admired them for years...I'm glad you have them.

    Sending love and friendship from an outsider,
    Mary Scott

    1. Hi Mary. Thank you so much for your lovely comments. Thank you for taking the time to read about us. I would be honored if you continued to follow our journey! ~Deb