Death: To Know or Not To Know?

Post 53 of 84

I don’t know how common this is to wonder, but I’m sure it’s crossed most people’s minds at some point. I know it has mine occasionally throughout my life. When and how will I die? And do I really want to know? I think it’s fair to say most people want to live a nice long healthy life and then die peacefully in their sleep.

They don’t think much of death until a family member or friend dies. That often has people reevaluate their own lives and priorities for a while, but life eventually gets back in the way. You certainly never stop missing your loved one, but you go on, and with the occasional thought, “I wonder when and how I will die.” The question is, what do you think you prefer? To know or not to know?

Now here I am, short of a tragic accident, I know how I will die. It’s not a pleasant death; that is one certainty. I will continue to waste away and lose all privacy and independence which is something that has always been very important to me. Actually this is the process of leading up to death. The best I can hope for in the final end is that I have a great hospice team to keep me well enough sedated so that I feel as little discomfort as possible. I find myself thinking of those final days at times and it can be scary. I know basically how. I just hope I don’t linger too long in the end.

Like most people who don’t know their fate, I want mine to be quietly in my sleep, albeit drug induced sleep. At this time I have less fear of the actual final day. It’s more the multiple losses and the scary feeling of not being able to breathe because of sticky mucus closing my throat with a congested nose that I experienced not too long ago. I know there will be more scares to come. Scares that can end in the feared nightmare death if not handled properly.

As for when, I’ll probably make it to my mid 40s. If I’m here longer than that, it will most likely be because I chose to have a tracheostomy. I still haven’t made that decision yet though I’m still leaning on the no side. So what is my answer to the question: to know or not to know? For me, in my position I answer yes and no. Yes, since I have been diagnosed with ALS, a disease with no cure and I know I’m dying, I want to know everything. The more I know the more I have control. I’m not a controlling person of other people, but I want to know what to expect for myself. Information is my friend.

If I was 25, or 40 for that matter without this diagnosis, I say no. If you’re alive, live like it!

My Brother and Nephew were in a band called Nevertheless. They wrote a song named Live Like We’re Alive. As a dying person I try to do that with some days being easier than others.

While alive, live like it! Click this link to the Nervertheless song.  

My brother is in the process of making his first full length solo album. You can support him by clicking this link.  He only has 7 days left!

Until next time, take care,




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This article was written by April


GracieMay 20, 2013 at 5:34 pmReply

April, you are the bravest person I know..I love you and I want to thank you for encouraging others to help with A J’s music project….I know he appreciates your support! I enjoy reading your blog..your candid reality is very hard to read, but it needs to be told…I had no idea the struggle ALS has affected you day to day…appreciate your honesty…we need to know! Hope you are feeling better today! Love xoxo

April AprilMay 20, 2013 at 9:43 pmReply

Thank you Gracie, and of course, that’s what brothers and sisters are for.
I know my blog is very candid, and sometimes it’s hard because I know my family reads it. I’m greatful you all allow me to do it without guilt. I can’t write about it unless I can be truthful. It still astonishes me that so few people truly know the horrors of this disease. I’ve had a nice day today with Mom, Amanda and Brayden visiting me. I love you too