Still Going, Still Waiting


I woke up Saturday morning thinking about The Brain and Stewie. It has been a while since I wrote an update on his condition and life in their house. Stewie keeps me and a few other close friends posted on their daily activities and The Brain’s downward progress. Until medical research gives the world another picture of disease progression, there’s only one way for a person with ALS to progress  – downhill.

Saturday, shortly after I woke up, I thought of The Brain and all that has changed for him and Stewie since I left them in August. And I finally did something I’ve been needing to for about a month – I cried. The Brain is such a fighter, and if it weren’t for BiPAP machines that help him breathe, I am certain he would not still be alive. The news of this last week is that The Brain is losing more control over the last of his voluntary muscular functions (I’m toning this down for those of you more squeamish). He’s also battling over-production of saliva along with less ability to swallow. The risk of him falling out of equipment to help transfer him in and out of his wheelchair grows everyday. What he can eat without choking is a dwindling list. When he sleeps, his breathing pattern changes.

Someone asked me recently what I thought his timeline was, beings that The Brain has outlived every one of my guesses. I could only respond by saying the disease is a waiting game. Lungs with less than 10% of their usual function that are hardening will eventually stop oxygenating his body. For now, only one day at a time.

I’m heavily distracted tonight. Some of it is Lent (Remember, I’m Orthodox. Easter/Pascha hasn’t happened yet). Some of it is school – Oh, the guilt of my studying doused with heavy distractions never being enough. But I know part of my mind-wandering is The Brain and wondering how he is really doing.

How odd to be in the midst of Lent with The Brain and Stewie always in the back of my mind. This is a time of spiritual refocusing that culminates in the proclamation that “CHRIST IS RISEN FROM THE DEAD TRAMPLING DOWN DEATH BY DEATH. AND UPON THOSE IN THE TOMBS BESTOWING LIFE!” So, here I am to be celebrating the Risen Christ and the Hope he gives us over death, yet, each day greets The Brain with the reality that he is closer to death. While each of us is closer everyday, how much more sobering to see a person for whom it is a present reality rather than a passing thought.

During the Paschal service, we are reminded of the power of our Hope in Christ. “O Death, where is thy sting? O Hell, where is thy victory?”

It still doesn’t mean that while The Brain is alive I don’t feel the sting of his or Stewie’s suffering.

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