Tuesday, August 19, 2014

It is me. Not you.

My father tried to write a note the other day. It took a long time for my sister and mother to deciper, but finally realized what he wrote: "Take me to Friendly's." Our hearts broke.

My father is dying.  He is in the late stages of Huntington's Disease (HD) and has lost his ability to communicate and losing his ability to swallow.  It is very difficult for him to eat anything -- even liquids.  Soon the time will come when we will have to make end of life decisions for the man that gave us life.

We've been through this before with my brother.  My father knows what is coming. We all do.  It isn't an easy death. Right now we wait. Wait for the disease to dictate when, but not before it makes us hurt. 

I am writing this extremely personal and painful entry because I finally figured out why the ALS ice bucket challenge was making me so angry. On FB I've been writing my opinions and getting the response of "but it is raising millions of dollars and awareness."  The more video's I saw the angrier I was getting and after much soul searching of why it was making me crazy I found the answer.

If this viral fundraising/awareness campaign started last year, I don't think I would react to it as I am now.  Hell, I probably be doing it! However, right now, I am in a raw and painful place because of what our family is currently going through with my father.

ALS is similar to HD and seeing people laughing and trying to out do each other is driving me nuts.  I am like a 2 year old throwing a temper tantrum inside my head yelling  "STOP IT! IT ISN'T FUN! NO ONE SHOULD BE LAUGHING"  The videos have turned into a game. Who can come up with the most creative video, what celebrity will be next to dump a bucket of water on their head, who will challenge who, all for purpose of awareness, yet, a very small percentage of them say anything about ALS. I wanted someone to say "I am sorry it fucking sucks and I am doing this because I understand how badly it fucking sucks. Pouring this ice water over my head is a wake up call that you all need help."  No one did.

The campaign has raised millions of dollars. Yet. My brother died. My father is still going to die. It is like the laughing and cheering each other on is making light of the pain. In my heart, I know that isn't the reality at all and people are participating for the right reasons. It is me.  Not the campaign. I am just sad, hurt and angry that I will be losing my superhero and the ice bucket challenge is a way to take out my pain.

*sigh*

I hope people still continue to raise money for ALS because I really truly do believe that if a cure if found then the others will follow.  It might be too late for my family, but if it saves a family the pain and agony of living with these disease it will be worth it.  My hope is that at this time next year, the same people that participated in the challenge will donate again minus the incentive of pouring water over their head.

One thing I do want to say is to please educate yourself about ALS, Huntington's Disease and Parkinson's past the definition. Talk about it. Get to know the local community and how you can help besides $$ (which always help). The best gift we got for my dad was from a neighbor who knew how to sew. Since my father has difficulty swallowing half of his food ends up on his shirt, which equals lots of laundry. Our neighbor made these wonderful bibs for my dad that are awesome and he loves them! This one little thing helped immensely.

Ask what could help and what families may need.


http://www.hdsa.org/

http://www.alsa.org/about-als/what-is-als.html

http://www.parkinsoninfo.org/

As for me, I am going to savor the moments I have left with my superhero and let him know that he did good.





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