My life got flipped-turned upside down
No, I think that sets the wrong tone. But really this is the story of how I learned to be grateful, why I am feeling particularly blessed, and how I figured out that even in the face of tragedy, especially in the face of personal tragedy, you can find a special kind of happiness.
It's a longer story of how he ended up there but the short version is that summer 2016 BT ended up a neurologist who sent him for extensive MRIs for a series of symptoms he had been presenting: uncontrollable muscle twitchings (fasciculations), balance issues, progressive muscle weakness. If you google these things together, ALS is one of the worst case scenario diseases that come up. But it's never the worst case scenario which is what I told him when he would bring it up. Parkinson's, maybe MS but ALS is terminal and it's never the worst case scenario anyway. But it was. Because of course it was. I didn't go to the doctor with him to hear the results. But when he called me to tell me I assure you, I did not comprehend everything he was saying. One of my friends knew that the results were coming in that day because I had been jumpy all afternoon and he happened to call right when I got off the phone with BT. I remember just sobbing into the phone and him telling me to get it together because I could not do that in front of the kids and I said "This moment, right here, this is when I get to fall apart. Because when I walk into that house I know I cannot do this. But I can right now. This is my moment to do this." And I did. I will forever to be grateful that I had someone who calmly listened to me fall apart and talk me through one of the worst moments of my life. But then I lost it completely when I told my mom in the garage. The simple act of telling people this kind of news becomes easy but it also chips away at you. I don't know how much I've lost of myself in relaying the news over and over.
He was sent to Baylor for a second opinion. In between, we celebrated our 12th wedding anniversary bringing our total number of years together to 18 thus far. Between the two appointments I was working the reference desk and a student came to ask me for help. Noticing my wedding ring he asked how long I had been married.
Me: It's funny you ask. It will be 12 years next week.Something in that conversation was a revelation to me. I had spent the better part of the two weeks since the initial diagnosis crying and bemoaning the circumstances but this brought home the fact that I had been very lucky. I don't believe in soulmates but I would say that BT was made for me. We're just a match. And it hasn't always been easy and we haven't always gotten along but I think we were just meant to be together. And to be maudlin, if we only have 20 years together, then there is no better way I would spend those 20 years.
Student: Wow, 12 years that is so long. You never hear that anymore.
Me: Yes, 18 years all in all.
Student: That is so amazing.
Me; Yes, I have been very blessed.
So the diagnosis was confirmed thus ending everyone's hope that it was maybe something else. He couldn't go to work anymore and had to learn how to stay home which was not easy for the hard worker that he is. There was more falling, more muscle weakness, physical therapy, and foot brace. It felt like something new and something worse everyday. I had a moment when I thought maybe he was at a plateau and maybe it wouldn't get any worse and we could deal with this and then something happened, a fall or his left leg started to feel weaker or something and I knew I could not believe in a miracle. That it would crush me and I'd never recover if I believed and that miracle never came. Acceptance is not resignation though. I just know that I have to do what needs to be done and I want to make sure he lives his best life. And the miracle will come whether I believe or not. Because that's what makes them miracles. But I know for a fact that I am extremely lucky and so very blessed. And what gets weighed down in everyday life and gets taken for grant is so crystal clear to me right now. I could write a million words on how horrible this is and why everything sucks and why why why. On the future that has been lost and replaced with the likelihood and terribleness of being a young widow with two kids. I don't look into the future so much anymore. I couldn't even begin to plan it and it doesn't look like I want it to so I try to stay right where I am. To do what needs to be done now. To enjoy every moment. To be grateful and thankful for everything I have. That is the best place to be right now.