There are times when the Big He and I are just hanging out and talking I forget about ALS. There are times when I wake up and think, what the hell…is this really happening?. It’s a new year and as people move forward embracing the future, I want to stop time. I don’t want to move forward. I don’t want to embrace the future. The future is scary. The future will only bring progression. Only those that are on or have been on an ALS journey get it. I see friends and family go about their day, dealing with the mundane things that we must do and I get mad. Probably a little jealous too. I am mad this happened to us. I am jealous those around me are truly unaware of what ALS is and what it does. To be blissfully ignorant again. I think, if only we had to deal getting up and going to work or getting your kid to school or practice. But that is not an ALS life. The reality of living an ALS life for the most part sucks. Yes, there many things I am able to appreciate more because of this life but the disease, sucks. From the outside looking in most people may think we are doing a good job. I have heard folks say they just don’t know how we do it. Well, I can tell you I don’t know how we do it either. Living an ALS life is living in a constant state of grief. There is actually a name for it, anticipatory grief. As your PAL loses function, you grieve. You grieve the impending loss of another function. It kills me to see the Big He having to go through this. I want to take it away but again, the reality is I can’t.
The reality is we have to get up everyday and live an ALS life. For those of you who do not live this life, be grateful. Count your blessings that you do not know this disease.
Yes, I am aware this is not the most uplifting post, it was not supposed to be. It reflects what I am feeling right now. Fear. Frustration. Its the reality of this life. Good days. Bad days. Days you just want to yell WTF!!! Maybe tomorrow will be good.
All my love,
About the He. Well, he is progressing. He is no longer driving. His voice…it has changed. He still can talk in his natural voice but now it has the ALS slur. He needs a little bit more help with breathing during the day now. ALS Sucks!