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Relationships

10/21/2021

6 Comments

 
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When I was diagnosed, communication about my future with friends and family was difficult. Of course we cried, got angry, asked every crazy question you could think of, and researched different treatments. We eventually determined we would walk this path together, and adjust life as needed. It all sounded acceptable to me, and 4 years later we are still walking this path together.
 
I want to talk about managing relationships. Everything has changed physically, emotionally and mentally. If I was upset, I could go for a drive, a run, go outside for a cigarette and beer or just walk alone. Now I just sit in my chair unable to do any of those things, heck I can’t even yell. If I wanted to show love, a kiss, hug, or well you know, I would do it. Now I just use my eyes and smile, which is fine but it’s obviously not the same. So the way I manage my relationships with other humans had to change drastically from my life pre ALS.
 
I’m not going to lie, I have turned into an asshole and now I do my best to not be one. I communicate only through my eye gaze computer, which is much slower than talking. Somewhere between 15 - 25 words per minute. I can’t participate in group conversations, even a one on one conversation is tough. And sometimes people don’t even let me finish my sentences. All of these challenges are so taxing on any person in a similar situation, and there is really no way to prepare yourself. You just learn and adapt as you go.
 
What I don’t want to happen is for myself to slip into isolation, where I can’t experience these emotions. So I have to learn different ways to express myself, and it’s quite a challenge. I truly feel that love is the greatest gift that God gave us. Love for your family, your friends, your significant other and ultimately yourself. Without love, I don’t see life being purposeful.
 
I guess my main thought here is, I want to be a better person. I will work on being a better human daily. I will become a better human. If I have caused you harm or agony, I apologize. I love you all.
6 Comments
Juan Reyes link
10/21/2021 02:07:50 pm

It's a struggle I anticipate with anxiety inducing episodes. Having an example such as you gives me hope that I will have the strength to endure also. Stay strong friend.

JR

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Heather
11/2/2021 08:25:03 pm

Shaun, thank you for sharing your thoughts. I am forever impressed and in awe of your ability to see yourself in such a realistic light and be the first one to share what sucks and what is awesome. You’ve figured out how complicated life is but how simple the important things are, and that inspires me. I love you and am so blessed by our friendship. And for the record, I will stop finishing your sentences and be patient so that you feel completely heard at all times. I DO need to work on the lip reading though. 😘

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Ashton
11/5/2021 08:54:05 pm

Hey dad it’s me.

I wanted to write about what I think about you and your journey through gals. It’s hard for you and me too because you have to go through that stuff and it’s hard for me to think everything is ok. I hope that you are feeling ok right now and that you are safe and healthy. I love you dad and miss you so much. It makes me sad that you have to go through all of that stuff you need to do and I just want to say I am with you all the way.

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Jacinda
12/5/2021 06:11:17 am

Thank you for sharing this and giving me a perspective that I have been needing to see. I have been diagnosed with an aggressive cancer and I'm not quite sure how to behave or what to think. Watching my mom suffer, listening to her crying through my bedroom wall has been difficult. I think I've been withdrawing more because I just don't know what to do for her.
It's weird being 25 and unsure of whether or not you'll reach your next birthday.

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Miranda
2/18/2022 09:46:12 pm

I just wanted to say I read this , I see you and I am on awe of your resilience

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Christopher Morgan link
10/21/2022 03:10:08 am

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