The Three Weeks

A few days after my dreadful birthday, my bowels began to wake up and things starting moving forward, literally.  Like after my first surgery, my NG tube was pulled out and I could begin drinking again.  Things seemed to progress fine, so I began to eat again – first with popsicles, Jello and pudding and then finally solid food.  I was so used to living at the hospital that I wasn’t sure what it would be like going home again.  The only times I had been outside since I was admitted was to go up to the rooftop of the hospital to do some kids crafts.  But I didn’t always feel like going up there, it was hot outside and the roof was black and the worst place possible for a sick, starving kid to make macaroni necklaces. 

The daily blood draws of being stuck in my arms was going to come to an end.  I looked like a heroin addict with bruises and track marks down my forearms and hands.  I would get to say goodbye to the IV’s, at one point I had three of them.  The NG tube was gone too and it left me with a very bad ulceration on my nostril from the tube sitting on the skin of my nose for two weeks.  I realized the only thing I would miss at the hospital were the nurses.  So many of them had made me feel like I was still a human being and they had treated me with love and tenderness, especially on my birthday.  It would be hard to say goodbye to them.  They had become my security blanket while I was there and it would feel strange not having them around me anymore.  I had grown so used to them.

But the biggest thing I would lose when I left, I had already been losing the whole time – a large amount of body weight.  When I was admitted to the hospital for my surgery I weighed right around 60 pounds.  After not eating for three weeks (except after my first surgery, but it all came back up anyway), I had lost nearly 20 pounds and I was now just barely 40 pounds.  I looked skeletal and my bones stuck out everywhere much like the pictures of starving children with kwashiorkor’s syndrome from starvation.  I had wasted away fat and muscle.  I was weak and tired just from walking down the hallway.  It would take a lot of pigging out to get back the fat I had lost.

The day came when at last, I could finally leave that hell hole.  The nurses were so happy for me.  They gave me huge hugs and wished me well.  I would be seeing some of them again in six weeks when I would have to go back to the hospital to have my ileostomy taken down.  My surgeries weren’t over, but at least this hospital stay was.  The sunshine nearly blinded me when we made it outside.  It was so bright and hot.  I just hadn’t spent much time outside in the past three weeks and it was like my eyes and skin had forgotten what sunshine was.

When we got home, my sister had made me a “Welcome Home Heather” sign.  It meant something to me.  My family was happy to have me home finally and I was happy to be home, but in the back of my mind, all I could think about was that I would have to go back in six to eight weeks and I would have to deal with my poop bag all that time, which I was not excited about and I certainly hoped none of my friends would find out about it. 

When I look back on how horrible it was for me during that three weeks, the things I think of the most are my feelings of sadness, loneliness, despair, and the extreme hunger, not the physical pain.  I think of how punishing the experience felt and I can’t help but feel like I was in a Yom Kippur hell for three weeks.  Every year on the holiest day of the Jewish year, on the 10^th day of the first month of the spiritual New Year, Jews observe a solemn day of atonement and self-deprivation of food, drink, and all things that bring pleasure.  I feel like I endured Yom Kippur for three weeks.  Sometimes I feel like I should get a “pay it forward” pass of 21 years for time served those 21 days, thirty years ago.  But that’s not how Yom Kippur works.  And anyway, lots of other people unfortunately have a worse story than mine, for example anyone who lived through the holocaust and had to endure and somehow survive for years until they were freed.

I am always surprised at how many people aren’t able to make it through one holy day of fasting.  Maybe it’s because their life and health don’t depend on it.  I don’t know, but I do know that if they had no choice, they’d do it.  Everyone has to do what they have to, to survive.  As I’ve heard wise people say “God only gives you that which you can handle.”  I for one believe I can handle a lot because I grew up having no choice.  The more you go through it, the easier it gets and the tougher you become.  And remembering that there’s someone out there in a worse situation helps me to feel less sorry for myself.  I’m still here, I’m still kicking and screaming, and I’m still thriving but that’s not the story for a lot of other people.  It’s not the story for many of my relatives and ancestors who had this disease and it’s not the story for all the people dying waiting for an organ transplant, or the people hearing from their oncologist that there is nothing more to do – it’s time for hospice.  That isn’t me and I wake up every day and thank God for that.