I watched an old 60 Minutes segment about this communication device, which uses thought patterns to help people communicate. The man who was using the device had ALS and could only move his eyes. In order to use the device, the subject has a caregiver put a skullcap on his head and put cold conduction gel into the little holes next to the scalp. Electrodes go into the holes. The man ( I think his name was Scott) stares at a screen as letters go by and when he sees the letter he is looking for, a part of his brain lights up and the computer knows which letter to choose. The process takes 20 seconds per letter.
My reaction was amazement of course and also a realization that I am not going to “bank” my voice as I had originally planned. Voice banking is the process of recording your voice saying as many words as possible to be used later for communication devices. The whole thing is not a fit for me – I don’t want to live beyond a time when I can breathe my own oxygen, eat my own food and speak my own words. I don’t want to dig my fingernails into this life, clutching until I draw blood. I DO want to go gentle into that good night.
Does that make me a coward or brave? In my brief time as a disabled person I’ve come to realize that living life from a wheelchair can be tough at times. People who choose to hang on hoping for a cure that may not come in time, who endure the many tiny indignities that accompany each day with this crazy disease, and who stay positive amidst the slow leak that is ALS – well they are heroes in my book. I just don’t think that’s me and I don’t think it takes any less resolve to NOT do the ventilator, or NOT do the communication device or NOT take any other measures that would keep me alive but not necessarily living. I think it takes strength whichever road you choose.
A family friend of my former in-laws (I’m now an outlaw) was literally yelling at me on the phone tonight to go to some website that has a cure for anything, “even cancer” as though that would help me. My son wrestled me for the phone so he could hang it up, but I was able to out-yell the guy in time to save him from Mac’s wrath – Mac who told me tonight I was a 1984 Gremlin with hover capability and no engine. When I asked him what he meant by that, he said “You’re of no practical use, but you’re really cool.”
He learned how to do the Heimlich Method tonight (I’ve been choking) and he also made me laugh my ass off right at a moment I was resolved to feel sorry for myself. I couldn’t grab my wallet with my good hand so I said “I hate my fucking hand!” and he said “Really? I'm rather partial to my fucking hand so I guess that’s where we part company.”
No one who knows me and Mac at all would think for one nanosecond that he isn’t the first thing on my mind when I ponder these (hopefully distant) future decisions. He’s also the last thing on my mind. That said, I promise to shut up and let others die however the hell they want to and all that I ask is to be afforded the same courtesy.
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Whatever you choose to do, you have the support of everyone who loves you. I think about death a lot. How. When. Where. I know it is coming. Sometimes I think about it while driving and not seeing someone in the next lane who I almost cut off. I think wow. That was close. Sometimes I think this pain in my head whenever I use my cell phone is a slow growing brain tumor like Teddy Kennedy had. Sometimes I think I will live to be 99. Who knows when it will come. The fact you are living so fully in the present is the real gift to Mac, yourself and all the rest of us. Today. Now. You give us all that. The present. A present.
At our airport the voice that makes the announcement is the same computerized voice that Stephen Hawking uses.
I always imagine the equal opportunity scenario that would lead to a person who uses a computerized voice, getting a job as an announcer. Wouldn't that be fantastic?
Consequently, I always feel compelled to make a stupid joke every time I go to the airport: "I'm so grateful Stephen Hawking was able to find work." As if Stephen Hawking, master of the universe, needs an airport job.
No matter how many times I make this joke, my husband never laughs.
Wow Carla that was amazing and so timely...it was a year ago today my Mom passed away from ALS..my sister and I have had alot of conversations about what if we get it, what would we do...pretty much on the same page as you! Only I asked for vodka down my feeding tube...it is so very brave and courageous of you to be contemplating such issues. Sadly I wish my Mom would have been so brave instead of fearing and fighting it so much. I do have to say I had fun with her Vynavox (sp) trying to see if I could make it swear much to her chagrin. All that being said I still cherish all the memories of the humor we found at the indignities of the disease...as it sounds as if you and your son do! I am so impressed with the depth and insight you still crank out...you are so impressive as the to the amount of za za zoom you still bring to life...your fan, Maureen
death is a new beginning
when it comes we go
nourished by the afterlife
and cherished by those we leave
behind
if there is no fear in death then there is no fear in life
live and die gracefully
in all good time
http://www.maniacworld.com/dog-having-a-blast-in-the-snow.html
PURE JOY!
Living totally in the present
I think you are the most amazing woman on earth to be so brave as to share your terminal illness so openly with all of us!
There are no wrong decisions, only the right ones for Carla.
Carla,
I have started and erased this message so many times I just have to give up. I can't think of what might be the perfect comment except to say whatever you choose will be right and we, who love you, will be there supporting you 100 percent.
after my mom died, I fell in to a major funk. I went to the dr with various ailments. One time the dr asked me what had gone on in my life. I gushed forth with how my mom had just died of ALS and I was sad and glad and confused. She looked at me and said "insulin"..this was after I had declared if I had ALS I would throw one helluva a party and then go for a hike in the woods with a bottle of ambien, bear country. You know, return my self to nature(only after having a wild time with a few inappropriate people). But the Dr told me to use insulin, it would be a done deal then. That scared the shit out of me. I was expecting her to say "Oh honey, now you won't get ALS". There are no guarantees only choices. I choose to go out of this world on my own terms. I had the honor of holding my mom's hand when she passed- I also had the honor of holding my sister Maureen's hand and my brother Tomas' hand whle my mom passed...Carla, you will be honored and loved no matter what you choose. I have lived a lot of your life (well without the musical talent) and I have so loved reading what you write. I wish you the best day ever today.
love,
your faithful maggie
Dear Carla,
You are so brave for sharing your story with us, and even more so that you share your personal thoughts about life and death. You are so remarkable and I pray every day for your comfort and those of your friends and family.
I lost my mother ( http://www.roadtripping.net/mom ) just under a year ago to ALS, and similiar to Maureen and Maggie I questioned if I had it and what I would do. I went through every test you could possibly take as there were lots of symptoms present. Thankfully, some of the symptoms have settled down and I am longer convinced that I have ALS - just a tremendous amount of stress.
I just wanted to let you know that just by reading your blog you have had an impact on me and my life. Thank you for all the gifts you have given this world.
.a
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