Living with ALS presents challenges and choices, ranging from how to safely get through a morning routine to deciding whether to live with mechanical ventilation or die. Shakespeare was right; To be or not to be, that is the question.
I’ve been weighing the pros and cons of getting trached, that is to get a tracheostomy and use invasive ventilation to breathe for me when my diaphragm and intercostal muscles grow too weak. I haven’t decided what I’m going to do when that time comes, but I think about it more than I care to admit.
Pros: stay alive, see my grandkids grow up, continue to enjoy my family and friends.
Cons: 24 hour carE, painful transition to a new normal, greater burden on my family.
People with ALS in the U.S., who are not veterans, also must contend with exorbitant medical costs. In countries with universal health care, prohibitive cost is not typically a factor. For example, In the U.S., five percent of people with ALS choose to extend life with a trach; In Japan, where they have universal health coverage, 80 to 90 percent of people get a trach. Let that sink in.
Yes, I have personal knowledge of friends with ALS who have chosen to die because their families could not afford the cost of keeping them alive. Others chose not to extend their lives because the are tired of suffering which is completely understandable. No judgment about that here. My point being, it is unconscionable that we, one of the richest countries, don’t adequately take care of our children and people who are elderly or disabled. Downright shameful. I didn’t realize the magnitude or consequence until I was one of them.
To live or not to live. That begs the question, what defines being alive? Heart beating, breathing, communicating, walking, working, playing? It’s relative.
Let’s switch it up a little. What makes you feel alive? What’s your purpose? What brings you joy? My answers are changing, paring down, as I lose physical function. Peeling back the layers, I’m left with what’s truly important. Family and friends, loving, encouraging, supporting in good times and bad, that’s what makes my life worth living. I want to make a difference.
Are you living? I mean living, not existing. Get excited, set a big, hairy, audacious goal and make it happen. Volunteer. Bless one another. Get busy living the one life you have.
I’m Forgiven and Free and living the life given to me
January 16, 2018 at 12:52 am
Shelly I love you!
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January 16, 2018 at 1:00 am
Someone who I follow on Facebook shared your post which lead me here to your blog. I’ve been reading a little of your story. I lost my mother to als on 5/13/16, she was 56. I expected to watch my patents grow old together and to continue have my precious mother and dearest friend until I was an old lady. She was amazing, joyful and happy when she was taken in two years by this nightmare of a disease. I’m so sorry that you are even having to make such considerations about whether to live or die. My mother chose not to get a trache BC prior to als, she was the main bread winner and insurance provider. She wanted to live yet my dad had to continue working and couldn’t afford constant care along with my little brothers tuition as well as house payments. So that May when she began really struggling and choking she refused water and nourishment in her feeding tube. The only liquid she received was morphine. She never woke up enough for me to say goodbye or beg her not to give up. I tell you all this BC if you have any fight left or any desire to survive, then please find a way. I’m sure your family loves you so dearly and want any extra moments they can have. My mother wasn’t a burden to me, it was a honor to care for her, I would have taken her place. I know this is so personal and none of my business but I just felt lead to tell you my story and regret that I must live with.
January 16, 2018 at 2:22 am
Thank you for sharing your story with me. I’m terribly sorry for the loss of your dear mother. ALS is a horrible disease. I really appreciate you taking the time to use your pain to encourage me. It means a lot. Bless you.
January 16, 2018 at 3:33 am
I too, lost my mother to ALS 11 years ago. I noticed your use of the word ‘joyful’, as JOY was her favorite word. She believed J-Jesus first, O-Others second, and Y-Yourself last. My parents were blessed with good healthcare and it was never a burden for them. My mom was adement about not having advanced measures taken to prolong her life. And ironically, when we finally got to the point where we started getting her to think about a feeding tube, she went Home to be with Jesus. She got her wish in both. It’s hard to lose the independences and we grieved with her at each step. I know you will make the decision that is best for you and your family. Until there is a cure I continue to do what I can to raise awareness.
January 16, 2018 at 4:37 am
Shelly you still continue to inspire with your words and encourage others with the decisions you are faced with daily. No matter how much is taken from you, you always give back ten times more. You are a courageous woman and we all need to be so grateful for the little things. You’re always in my heart keep shining.
January 16, 2018 at 7:31 am
thanks for sharing this. I have for now decided that i will try life with a tracheostomy. But german healthcare covers all of the costs and enables you to stay at home.
that makes a big difference.
January 17, 2018 at 4:08 am
I don’t know you personally but I have seen a few things you’ve done online about ALS and you are obviously such a beautiful person. Your family is lucky to have you.
February 7, 2019 at 8:14 pm
My sweet soul sister. Your words are food for the soul. Thank you for always keeping it real. I imagine this was not what you had planned to inspire people. Yet, you are. Your authenticity gives permission for others To do the same. I love you to the sky and back and hope to see you soon.
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