12.30.20 Death Becomes Her

Easily one of my favorite movies, fyi.

When I got my diagnosis, I was given lots of resources, people to meet, and decisions to make. The doctors, the ALS Texas staff, and loving friends made sure I was covered. Even after almost 6 years, it’s easy to get back to that overwhelmed state.

One thing, of many, that absolutely no one talks about is how many friends will die during your journey with this disease. It’s been the single most difficult part of joining this community. During the final days of living with this disease, online forums and social media are low on the priority list- rightfully so. The gap between online posts and the announcement of passing is feared by all in this close knit community. Even a deliberate break from social media can cause alarm, especially in these times of heightened downtime.

ALS sparks lots of questions, so I appreciate the opportunity to learn from others. Especially on the tough topics, open and candid discussions are helpful. Steve handles these conversations well.

The FDA-approved ALS drugs Riluzole and Radicava don’t seem to be slowing down my ALS progression. On the plus side, I think they are causing my hair to grow back.
When you can’t dress yourself, you’re not allowed to complain when your clothes don’t match.
Another ALS Holiday favorite! An Ode to my Trilogy 100 Breathing Machine!
New experience for me. A humongous sneeze while wearing my Trilogy mask.
I do not recommend it.
You may think it’s funny, but it’s snot.

I’ve introduced y’all before to my friend Steve Martin. I included a couple of my favorite posts of his above, I could go on and on about Steve. He has a great way with words, describing difficult topics with precision and grace. He recently posted the following and I found it informative and scary, which is how I would describe most facts concerning ALS.

HOW AND WHEN WILL I DIE?

Part One: HOW?

Okay, so maybe it’s not the most pleasant subject to post about, but I figured that 2020 has already been so bad that you should be able to handle this. I decided to write it ASAP because it wouldn’t be very fun to begin the new year with a post like this. 2021 will be filled with only good things, right? 🙄

ALS is a disease that destroys motor neurons. Most people with ALS die from respiratory failure. Motor neurons control all voluntary movement. It doesn’t affect the heart or brain because there are no voluntary muscles in those parts. The lungs are interesting. We breathe without thinking about it, just as our hearts beat without any conscious thought. However, we CAN voluntarily control our breathing, such as when we hold our breath in the presence of someone wearing too much cheap cologne or when we purposefully take a deep breath to blow out candles on a birthday cake (back in the days when it was legal to do so). Therefore, there must be some of those motor neurons in the diaphragm muscle which controls breathing. When my diaphragm muscle gets too weak, it will be time for me to go bye bye. Of course if God wants to call me home before then, I could possibly pass away from some other cause, such as falling from a tall ladder, which is highly unlikely since I can’t climb up a ladder.

Am I afraid to die? I feel sadness because of the temporary separation from those whom I love, but no, I’m not afraid at all because I know my next destination.

‘The Lord is my light and my salvation— so why should I be afraid? The Lord is my fortress, protecting me from danger, so why should I tremble?’ Psalms 27:1

Part Two: WHEN?

Yesterday I posted on the weird subject of how I will die. As promised, I will now conclude this special two-part series by discussing the even weirder subject of WHEN it will happen. It’s bizarre to talk about this because…Well it just is! When I was a college student at UC Santa Barbara, someone asked me, “If you could find out how or when you would die, would you want to know?” No way! That would be creepy! Well now I have a general idea of both of those things. And yeah, it IS a little bit creepy.

WHEN? I think there are some people out there who have followed our journey from the beginning who are thinking, “This guy is still alive? Thought he’d be gone by this time!” Well, I’m still here. Of course only God knows when my final day in this body will be. Nevertheless, because I’ve been totally open with everyone throughout my illness, I will tell you what I know. It’s all about the breathing. Eight months ago my breathing numbers plummeted. That is when both my pulmonologist and neurologist recommended that I start hospice. On that day, Chisa asked (because I didn’t have the guts to) how much time I had left. The doctor told us that it’s impossible to know, but her estimate was that I had “months” left.

It must be mentioned that it’s possible for some people with ALS to prolong their life by getting a tracheostomy, a procedure in which a ventilator is attached to an opening in the throat. It is not common for ALS patients in the US, but it is available for those who want it. This option is a highly personal choice with many factors to consider. We have seriously thought and prayed about this, and feel at peace about not doing the tracheostomy.

Since going on hospice, my breathing has gotten weaker. However, although my breathing hasn’t been measured since beginning hospice, I don’t think it is spiraling downward like it was previously. So, my guess is that I could buy the farm, meet my maker, bite the dust, cross over to the other side, kick the bucket, join the majority, depart, perish, make my exit, expire , become room temperature, and DIE –anytime from two weeks from now to (less likely) two years from now. At some point, my breathing will take a turn for the worse, and I’ll go downhill from there.

Why would I even think about that? And why in the world would I type out with my eye-gaze device for others to read? Because, in addition to being a little creepy, it has also been a tremendous blessing to know that I could be close to my “travel date”. I live every single day like it’s my last day on earth –because it could very well be. Priorities are streamlined. Important things become important, and unimportant things become unimportant (except for watching the Pittsburgh Steelers). Life is less complex. It’s actually pretty simple: love God and love people. Be thankful. Be content. Remember that NONE of us is guaranteed tomorrow. But so many of us waste precious time complaining or hating or holding grudges or refusing to get right with God. I wrote this hoping and praying that one or two people will decide to make the most out of the short time they have left, whether that be two more days or eighty more years.

‘Teach us to realize the brevity of life, so that we may grow in wisdom.’ -Psalms 90:12

We could all learn something from Steve. I also wanted to share a Caring Bridge post that was posted in the Women’s Forum I follow on FB. Tami Holloman was diagnosed in December 2019. This is powerful.

In Glasgow I attended a presentation of research published on making wishes known concerning ventilation (pg 84). I’ve been pretty vocal about my plans, and since we’re already on the subject I’ll remind you just for fun.

as a pro-choice advocate in every aspect of my life, this conversation is very important to me. It’s my body, it’s my decision, it’s my right to make the decision on how I want to end my life.
I DO NOT WANT TO BE TRACHED

Now that I’ve given you the warm and fuzzies, my hope is that you take this information and find encouragement. Happy almost end of 2020!

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