Make You Feel my Love
“The winds of change are blowing wild and free, You ain’t seen nothing like me yet” – Garth Brooks
I recently read ALS: A Respiratory Perspective by Kipling A. Jackson and I recommend adding it to your to do list. I sent copies to a few people with the hopes that they will send me their thoughts on the topic. Kip tells it how it is, complete honesty and the numbers behind certain options concerning care. It’s a first hand look at what it means to have a tracheostomy, not just for himself but for his wife, his caregiver (who is also his wife), and for everyone they encounter.
Obviously this is a decision Kenneth and I will make together. Obviously this isn’t a decision that will be made lightly or without extensive research and conversation. Obviously this isn’t an easy topic to fathom much less discuss. Obviously this is terrifying.
As I said Friday, communication is a two way street. I come to you today with the hopes that you’ll read my post below, read Kips book – I read it one sitting, won’t take long – and give me your honest feedback – What did you find most interesting? What did you learn? Any takeaways?
PS I’m not asking what would you do, promise.
Original post from 3.20.17:
Friday I posted a blog about ALS and how it doesn’t make sense. It’s pretty sappy and depressing, so read at your own risk.
That post has infiltrated all of my thoughts and has manifested itself into this rambling. Enjoy!
According to MDA, “In ALS, nerve cells that control muscle cells gradually die. In most cases, the cause is unknown. As these motor neurons die, the muscles they control become weak and then nonfunctional. Eventually, the person with ALS may become paralyzed.
Without assistive technologies such as mechanical ventilation and feeding tubes, the average life expectancy is three to five years after an ALS diagnosis…Modern technology has allowed people with ALS to compensate to some degree for almost every loss of function, making it possible even for those with almost no muscle function to continue to breathe, communicate, eat, travel and use a computer…
Roughly half of all people with ALS exhibit some symptoms of cognitive impairment at some stage in their disease. Often, these cognitive changes are mild and include experiences like difficulty paying attention in conversations, trouble concentrating or finding words, and difficulty shifting attention from one thing to another.”
To sum it up: I’m going to lose all ability to do anything for myself, including breathing, and I’m going to maintain most if not all of my cognitive function with a front row seat to my physical depreciation. One would think that if you did have to sit and watch yourself deteriorate, losing your mental capacity might be preferable.
So what makes you, you? Or me, me? I doubt anyone would write home about my handwriting or how I hold a toothbrush, but I feel fairly certain that my love for traveling and the ability to do so are part of my being. I can’t imagine anyone would miss my snoring, but breathing on my own is something I’ve done for 30 years and if no one else missed it, I definitely would. I am certain that you could find plenty of others to join your crusade to reduce the amount of words that flow freely from my mouth on a daily basis, but surely that over abundance of words is part of my Sunny-ness.
So who am I if I can’t travel? Or breathe on my own? Or talk? None of these abilities are the first thing that I use to describe myself to others- Hi, I’m Sunny and I can breathe all by myself! Can you imagine interchanging fun description words like loud, giggly, and full of life with descriptions like breathing by ventilation, feeding by tube, or communication through computer?
If I consider breathing on my own, chewing my food, and using my mouth to speak all parts of what makes me, me then does the loss of these abilities make me not me? Is that how one determines their personal definition of quality of life? Is that where one draws the line of extrodinary measures? Do extenuating circumstances only apply to death bed situations or do they come into play when your death is long and drawn out?
Is it like a buffet? I’ll go for the feeding tube but ventilator life is out of the question? As I’ve mentioned before, and what point does your options shift from quantity (years) to quality (machine controlled living)? And is it okay to inflict that level of decision making on someone else i.e. my husband? Ultimately, is this even really my decision? Should I get a say in how much pain and agony I inflict on those around me in the form of constant care because I chose quantity over quality? Shouldn’t it be up to Kenneth how long we want to prolong the inevitable? Isn’t this exactly like putting the family dog to sleep because of old age, pain, and to be put out of his misery?
Why is it common practice to have these discussions and make these decisions for our family dog out of mercy but not our wife? Does that even make sense? If what makes me, me is gone, can we move into a conversation of mercy? If not for my sake, then for the sake of my husband? Or our marriage? Or my family?
Until we get to that point in this fun game called ALS, I’m going to enjoy the Sunny days as me, Sunny Brous Erasmus.