I was strolling along my ALS life. Symptoms were stable. Progression remained. slow. Then out of the blue I stumbled over a crack. A very large crack. I didn’t even see it coming. It hit fast and hard.
Two weeks ago, I I was facing my own mortality. There were three ER visits over a two-week time span before I was given a correct diagnosis. The last of these visits led to surgery and admission to the ICU due to septic shock. My gallbladder was grossly infected causing my blood pressure to plummet. I had a drain placed in my gallbladder. I was on IV medications called pressors to increase my blood pressure. I also have 8 mm kidney stone, and the urologist was threatening to do surgery. I was told I would have to be intubated with a possibility I could not be extubated or I could die. The team decided we would try to let it pass on its own and return to the emergency room for supportive care when needed.
By the end of day four I wanted to go home, and I was scared of it what it would entail. ALS has created such a burden on my husband. Now he would have to take care of my drain; changing the dressing, flushing the tube and draining the bag. I was worried it would be too much. As I thought about this, especially when I was feeling horribly ill, I thought I wanted to die. One might think these added tasks would not be a big deal, especially those who don’t know much about ALS. Every new task is piled on to the already growing stack of his duties. Prior to hospitalization I could do some things for myself. While in the hospital, I completely lost the use of my arms. I can’t wipe my nose, which, at times, runs like a faucet. Prior to hospitalization, I was able to feed myself breakfast. Now my husband or my caregiver has to feed me all meals. I’m unable to hold my phone and have not learned how to use the accessibility features. Two of things I can still do independently are operating my Tobii eye gaze, which helps me communicate with the outside world, and driving my chair.
We have four weeks until I have a scan to decide if the drain has done its job. What we understood from the surgeon was I would still need to have the gallbladder removed. Another surgery, another recovery, and another chance of complications.
Lying in my ICU bed, with my husband holding my hand, I told him I thought I was going to die. Thinking back I felt I was looking through a tunnel that was closing in on me. I could have easily given up. When I was in that bed, feeling miserable, I had thoughts of using MAiD (Medical Aid in Dying). I vacillated between wanting to die and being afraid that I was going to. My husband asked me to fight and not make any decisions until I was out of the hospital. When he told me he was not ready for me to die, that’s all it took to change my outlook.
So here I am, still recovering. I will be receiving in home physical therapy soon and I’m hoping to have some functional improvements in my arms. People with ALS rarely gain muscle once it’s gone. However, I have had good luck with physical therapy in the past and have felt small improvements in strength.
I appreciate everyone who prayed for me through this scary ordeal. I appreciate my husband and all that he has to done to take care of me. This was a crack on the trail I call life, but that’s all it was. Just a crack. With the help of my husband, church and hospital staff, we were able to continue our journey.
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