Dream
Last night I had a dream.
Let me preface this with saying the way I have had to alter my sleep, I have not had more than 6 dreams that I am aware of in the past year and a half. When Jason got his trach back on May 1, 2017, he could no longer wake me using words. He woke me by clicking his tongue in his mouth. Sometime at the end of last year, he slowly lost that ability, but could make himself breathe heavier so that I could be alerted. Maybe I could just sense that he was up (you know how you sense when someone is looking at you?) Also, I was so trained by that time that I woke up feeling guilty if my body allowed more than 2 hours of sleep at a time because I slept through checking on Jason. By the first few months of this year, we altered our bedroom to allow the use of Jason's computer in there so that he could use it to wake me. We also established some rules-no waking me more than once an hour! And he had gotten a clock for Christmas that displayed a large red LED display on the ceiling so that he would know what time it was at night. Jason wears contacts and glasses, but not at night, so he needed to be able to see it! Sometimes more than once a night, he would accidentally use the emergency alarm on the computer-which was such a wonderful awakening (sarcasm...it was extremely frustrating) experience. We actually had a doctor's appointment on July 23 on the day that we went into the hospital this last time to check out his dry eyes. We had learned through IT intervention to fix his computer issues that his dry eyes were causing problems with free typing and actually "picking" what he wanted. It only took since we got the computer, which was mid November 2017 (insert angry face here, but thank you Danny for helping make this all happen)
Anyway, I had a dream, so it was a big deal. I want to share this dream, although I didn't like it one bit. There was a treatment that was done for a MD patient (muscular distrophy, which is another disease treated by the same team of doctors) that worked, so they tried it on an ALS patient. For the MD patient, it cured them. For the ALS patient, it was only temporary, but that was not widespread knowledge. Remember that new treatment FDA approved in May 2017 that seemed so promising, until we learned that not only would it not work, but Jason would get IV treatments 200 or so days of a year? Yeah...too good to be true! This treatment was sort of an activation of the neurons using electricity. Imagine the medical shows where a heart stops beating and you use voltage to "shock" them and the heart starts beating again. Well, really, electrical cardioversion is done to shock the heart to convert it from an irregular rhythm back into a normal sinus rhythm. It was like this, except for the neurons. So, my dream was the display of the success of this treatment-in the form of a large crowd in a football stadium type setting with the successfully treated patients being wheeled through. Picture people cheering like fans lining a stadium tunnel and a open aired carriage going through it with the patients on it, like in the movie Hunger Games. Jason was the second patient through and he was so happy, so excited that the treatment worked that he was jumping up and down like Rocky on the steps of the Philadelphia Museum of Art. I, on the other hand, was screaming to all the people, yelling at the top of my lungs "It isn't real, it isn't real." They saw Jason in that moment where he looked healed, but it was temporary. We had to go home knowing that the treatment would wear off and would not cure.
I don't know why I had this dream. Or why I felt the need to share it. Am I being hopeful? That one day there will be a cure. Or that I wished Jason had just one day, even if temporary to be his old self again? Maybe I don't feel that any of this situation could possibly be real. How could it possibly be real that I am losing my husband....not on a long term scale, but hourly now. It could be a display of how I've been feeling this past month, well longer if I am being honest. If you see only a glimpse of Jason with ALS, for a few hours or for a weekend or through these blogs-that our followers will feel like they know what is going on completely or that they know what this feels like. I appreciate all the support, but at times I feel alone. Everyone that comes to visit comes in pairs. 2 friends come together, or a couple comes together. Jason's parents are here together. I am racking my brain, and I cannot remember just one person that has come just by themselves to the house to visit Jason in a long while. They are able to support each other. But my other, my pair, is lying in that bed...who is my support with their sole purpose being for me? I MUST add that no one has ever made me feel this way and I've gotten nothing but love and support. It's just not the same as having my person. And even with the disease-I still vent to him :) He better go ahead and prepare to hear it from heaven!
So, I've mentioned that it feels like an hourly battle now, maybe a day to day because we really don't know. This disease has never given Jason any breaks and isn't now either. On Thursday morning, around 9am, Jason's stomach started to fill with air. The air---coming from his ventilator. Not only is it not enough that he can't get food because it goes into the lungs, now the air that is supposed to be filling his lungs is going down into his stomach. Air in the stomach=gas=pain. GREAT! Medications are given via that tube, but we close the tube so he can absorb the medication and his stomach fills with air. GREAT! And starting yesterday, we are having trouble communicating-Jason's eye and eyebrows just will not work. Tomorrow, it may be different, but last night and today it is hard.
How am I doing? In this very moment, I'm just tired! I'm not sure how to answer people. I mean, what am I expected to say? It feels like I have to support everyone else. One minute, I can handle it and the next I am emotionally unstable. I do not want to do this. I didn't want to do it that Friday we went on hospice. I remember talking to my lifesaver Courtney that day and saying over and over "I don't want to do this" I also don't want to do the after. I don't want to assign someone to take care of Annalise if I die because there is no back-up parent. I don't to figure out if I should live in NC or GA or wherever. I don't want want to explain what happened to her Daddy. I don't want to start over. And then I'll remember that I am not alone when I read a letter from Shelley, an old high school friend that I got a few weeks ago-loss is such a strange thing. No one loses the same way, but if we can share our experience and help someone else, maybe there is something in that? Maybe?