Something that I've really been working on grasping and living by is that PAIN IS RELATIVE. The most difficult thing someone is experiencing could seem small to you but they haven't dealt with anything that hurts more so they FEEL the same.
I have such a hard time trying to talk to people about what im going through, because most think they are helping by trying to relate to my pain by something theyve been through.
Unless youre in my exact situation, you will never understand.
This is my hardest thing, that was yours.
At the same time, I don't want people to think because i have my own things going on that they cant talk to me about theirs.
For instance, the other day someone was having a really difficult time and told me their parents were getting divorced.
I could have said, so? I've been watching my dad slowly die in front of me for the past 4 years.
But that isn't the way i think.
I say, "Wow, this must be so hard on you. I am so sorry.. i cant imagine what you must be feeling. Its hard to stay strong in times like these but i believe in you, and i know you can make it through this."
That should be enough.
That is how i would like people to talk to me. Also, ask questions, DONT make someone elses pain about you.
I hate it when people are like, yeah i knew someone with ALS too, and try to relate like that. Its not the same when its your dad. And the story usually ends with "They died."
Even though thats the obvious end, no one wants to hear that!
I need love and comfort, dont try to make my hurt seem unjustified, because that is what trying to relate to me feels like..
If its your opinion that a fathers sudden death is harder, or that cancer is harder. I respect that, but i do not agree. I don't know what that feels like though, so i understand that not everyone will agree with me.
Imagine being that energetic and outgoing, wanting to say and do so much, but being trapped in a body that doesnt let you. I cant. But my dad cant move, or speak. It wears on us all. Its hard on me because he used to tie my shoes, now i put his shoes on for him. he used to feed me and cook for me, and before he lost the ability to eat, i was feeding him. This role reversal has been so hard for me. Watching my role model, my strong, capable father, wither away in front of me.
He needs so much from us.
About the same amount of time needed when youre taking care of a newborn baby.
I feel like i have been awesome at staying so positive, it helps our whole family when we act like everything is fine.
But the other day, I watched a video my amazingly talented older sister had made.
Hearing my dads voice again, and the happiness in my older sisters voice, just broke my heart.
I dont often think about details of how things were, but i just cant believe how things are SO different now.
Now, We're all so sad deep down, really just masking it, distracting ourselves, getting through each day, pretending like we're all okay.
We didnt used to be so sad. I think thats what got me in the video the most too. Ashley was so adorable and bubbly and i know how sad she must have been to have made that video.
In the end, my dad says "ashley are you okay?" And she replies, "i dont know"
And i try not to cry, i try to stay positive, but sometimes you just lose it for a while.
And then people try to tell me to cheer up? To cherish the now? Like do you see me?? I usually am. Let me have my breakdown, be there for me but dont try to change how i feel.
Ashley's video is here: