Sunday, March 29, 2015

You're Not You

This was a movie I watched last night on Netflix - it has Hilary Swank, Josh Duhamel, and Emmy Rossum.  It came out in 2014 and I don't recall it, but oh was I snotting all over the place!
Swank plays a woman in her late 30s who develops ALS and her husband played by Duhamel dresses, bathes, puts on her make up, etc.  Swank finds out he cheats on her, feels guilty as she can't give him the life he deserves or the life they thought they would have when they first married.
ALS eventually takes away your breathing ability and you end up on a ventilator. Swanks character did not want to end up on a ventilator, she wanted to die on her terms at home even though her family wanted different.  Her friends also distanced themselves as they didn't know how to deal with Swanks condition.

I related to this movie on so many levels.  When you first marry your beloved you dream and discuss all the great things you are going to accomplish together.  The places to go, the children to raise, the world to conquer.  Then BAM you develop a life altering condition that slowly takes away things you love to do.  I have the greatest husband who has stood by me through it all, yes he gets tired, yes he gets cranky, but I know he's there.  I've said to him he got the raw end of this deal, and his response is that he definitely didn't -God put us together for a reason.  I've helped him through things and made him who he is today and he's here to help me and loves me very much. How did I get so lucky?

Gratefully I do not have a progressive neurological condition, and I can walk.  But while I was in the hospital Greg never complained about adjusting my pillows with all my chest tubes or cleaning my butt because I couldn't reach back there.  (Wiping a spouse butt is on a whole other level for both parties involved). But I do feel bad I can't give Greg everything he needs right now.
We have a whole new lifestyle to adjust to with meds, side effects, routines.
We have seen people distance themselves and that hurts but they must have their reasons.
The ventilator issue is a hard one for me- I was intubated twice (2surgeries) and was awake and that was horrible! I don't ever want a ventilator again! I'm also a difficult intubation. I truly believe I have some post traumatic stress from the complications that occurred post-op. I have a constant fear of getting sick and ending up back in the hospital and away from home. I was away for so long and it was so incredibly difficult.  I cry thinking about it now. But I have amazing supportive family, friends, co- workers and that makes life easier.

Be thankful for your body and what it can do and treat it well - it can do amazing things.

Watch the movie , it's worth it.