I Won’t Be There, I’ll Be Dead

Post 47 of 84

While in the process of working on several projects, primarily for my family to have after my death, I’ll catch myself thinking of being there when they see certain things. I won’t be there, I’ll be dead. It’s only a brief thought before I realize it, sometimes it makes me gasp.

It’s the same feeling of momentarily thinking of seeing someone you love who has died. You have the thought for a moment, then you realize they won’t be there, ever. I think it’s part of the grieving process, the mind refreshing and reconditioning itself to accept the new reality. As time goes on, these feelings eventually come less and less maybe resurfacing during stress for some people, especially if it’s someone you spent a lot of time with. A real part of your life.

It’s very strange experiencing that with myself. But that’s exactly what’s happening, I’m mourning. I think it’s something only the terminally ill can fully relate to. I’m planning my own afterlife gathering, if you will. I have a show that is at an hour and a half long now. I at first set the limit to an hour. Now I’m struggling with keeping it under 2 hours. It will be watched by them on a large screen TV in my Mother’s church. I had at first planned on reserving a nice cozy room where they can sit comfortably and watch without any formalities of a traditional wake. I started realizing this would be difficult because of the amount of people present and possibly the timing. I don’t want Tony having to put anything together, his work will end with me. It will be time for him to mourn my actual death and began living life without me in whatever direction he chooses. My Mother likes the idea of it being in a church and her church is well set up for it with large screens ready and plenty of room.

I’m also focusing on more individual and personalized things for my immediate family, especially my kids. I sometimes feel in a hurry, sometimes I feel I have plenty of time.There is my website and blog that will always be here for anybody. I second guess at times whether or not this blog and how much I express of my personal life and thoughts will be a good or bad thing for my family. I always conclude it will be a good thing. Hopefully one day it will be known, along with others, as the blog of a person with ALS before there was a cure.

More than anything, it’s my show that I’m making for them that gets me the most. I will have a thought of seeing the reaction of it, especially the lighthearted things. I’m not wanting to use the word celebration, but There are moments meant for laughter. It’s not a doom and gloom feel I’m going for. Yes, I realize they will be mourning, but I want them to laugh too, and have this recording at any time they feel like watching it. I think a special and personal recording of what I have to say to my the family is much better than the bulky box most funeral home sell you that most often are taken home and stored away like a bad secret.

Other strange things occasionally hit me too. For example, on my website I have a daily pic page, it only shows the fist picture right now. I plan to show that every several months so that the progression of ALS is seen in time lapse form. Tony took the first picture on my one year diagnosis anniversary. We take one every day. It will be up to my family before I die whether it is something they want kept on the site for others. I’ve thought of watching it all the way through. I will get to see most of it except the final picture. I will be dead.

There is also the documentary that will span my entire journey with ALS. My day to day life and adaption to progression along with other things will be shown. It will be from close to one year after diagnosis until my last breath. I’m extremely lucky I have 7th Wave Pictures dedicated to this. No, I don’t have a camera following my every move every moment, but often. and there will be years of footage when it’s over that will show everything a person with ALS experiences, and how I dealt with it. In the time since we’ve began, I already forget when a camera is rolling. I’m not holding back anything from being recorded. I don’t know what I will get to see, but I know it’s not the ending. I’ll be dead.

I’m sure some people reading this will think this is strange and morbid, and it’s keeping me from focusing on living. The opposite couldn’t be more true. I do have other interactions that don’t involve my death or ALS at all. The hard reality of it is that ALS and the fact I’m dying are a big part of my life, and for the rest of it.

Everyone has their way of dealing. For me it’s keeping busy with it. I can’t stop it from happening. It keeps me feeling like I  have some control and purpose over what’s happening by documenting it’s course to show people what it’s really like behind public smiles and closed doors. I know this would interest me, especially as a person with ALS. I’m doing what I want and I think I’m doing it in a healthy way. Problems come up that have to be dealt with, but that’s the way it is for any endeavor. That is life.

I do take breaks when I feel I need to and when I see Tony needs to. Tony is a part of everything. Without Tony the show I’m putting together wouldn’t be possible. He has experience in what I’m wanting to make and is really making my vision come to be even though it’s hard at times, after all he is part of it, He hasn’t asked anything be changed about my message to him or anybody.

This is what keeps me going. It’s not for everyone, but It is for me.

Until next time, take care,








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This article was written by April


kmikoMay 29, 2013 at 7:44 pmReply

April, this thought provoking blog must have also been difficult for you to write. As an adult child of a terminally ill father, I do think of these things too but you’re right it’s not the same for me. I do know from friends who have lost a loved one, they shared with me the celebratory parties they attended while the person was still living. I guess if one is up to it, it sounds like a grand idea. I’ve always thought it would be nice to be at my own funeral while living as I tell my husband, then you’d see how much people like me! 🙂 I have always been an advocate of giving someone something while you are around, exactly for the reason you state, so you can see them receive it, so they can thank you and share their joy, tears, memories, etc. While dad starts to remove himself from public more and more, I tell him we we will continue to enjoy what he can regardless of those that stare at us while I feed him, or look at his neck brace and wonder what does he have, or glance at us while I assist him in and out of the car and hold doors for him. We must look like quite the couple when we travel, and I almost want to wear a shirt and label that says- daughter of dad with ALS, not greedy young (okay younger anyway!) girlfriend with old sugar daddy! HA HA
Thanks for taking the time to write. Dad will have a Tobii system maybe in a month or sooner, it was ordered back in March & then he can rejoin the world of technology and read your blogs himself! see you soon!! We miss group- especially to be with the people who always understand what you and dad are going through.

April AprilMay 29, 2013 at 11:42 pmReply

Thanks K, that’s great your dad will have a Tobii soon. I know exactly what your talking about with the looks. I see people looking, trying not to be obvious. I know they’re wondering what’s wrong with me. A stroke? Car accident? Some kind of head trauma? The shirt idea may not be a bad idea 🙂
We’re ready to get back together too with the people who get it, from both sides. See you soon.