10 years.

After 10 years, you would think I would handle this day better.  Or perhaps differently?  I don't know.

How do you "celebrate" the anniversary of the day when you learned you had a condition that would never go away - and in the immediate realm was threatening your life?  Some of my friends have suggested that it is a celebration of life, or of survival - perhaps a sign of overcoming?  I want to be that positive, but have spent most December 20 since 2002 reliving that treacherous day, remembering the fear, the unknown, the pain (both physical and emotional), and wondering how life would ever be the same.

At that time, I was working in the neuro rehab unit at LDS Hospital, so after the surgery and initial ICU stay, I was devastated to find that I would be moved to end up with my peers.  It was humbling and awkward, and made the recovery so much worse.  I didn't know how to deal with having hydrocephalus or the emotions I was feeling - but knew that my caregivers were watching me differently than most, since they knew me so well.  Working on that unit had prepared me to see the worst of what hydrocephalus could dole out, which made the diagnosis even scarier.

As the unit secretary at that time, I knew the unit social worker well, so when he came in hurriedly saying, "Sarah, I will leave these disability forms with you.  Please fill them out and then you can leave them on my desk.....", I found my head spinning thinking, "WHAT?  I am not disabled.  I am fine.  I am bright, I am capable, I don't need a handicap license plate".  I couldn't think past the image of me hopping out of my car at the grocery store while occupying a space that someone else actually needed.  I immediately threw the papers away and told Craig later that I never wanted to approach that subject again.

I was desperate to be out of the hospital for Christmas, and on the evening of the 23rd, they allowed me to go home.  Shortly after arriving home, I had a dystonic reaction, which looks like a seizure in most ways, and was immediately rushed back.  I was back home again after many hours in emergency, once they were sure it had passed.  Christmas Eve and Christmas passed me by in a blur, as I was too exhausted, medicated, and overwhelmed to do much at all.

In the weeks to follow, I was so blue.  I knew I was suddenly different - and wondered if I would ever feel normal.  I felt less than others and scared that my shunt would break at a moment's notice if I was not sitting very still or being very careful with my body.  I started feeling terribly scared to leave my parent's house and was so all-consumingly sad.  My wonderful parents fixed it, and almost in an instant.  They are very up-front people and this situation was no different.  After about 2 months of this behavior, they simply sat me down and said, "Are you done with this?  Because we are.  Sometimes life stinks, but it's time to move on.  No one wants to be around a miserable person".

This might sound harsh to some, but in our family, it just clicked.  I knew I didn't want to be miserable.  I didn't want others to be miserable because of me.  And I was done.  It was over.  There are surely days of sadness, but overall, I was done with the pity-party and we all moved on.

Tomorrow Chad and I have a special dinner planned, but I think that is simply because we love to dine well. :)  Is it a celebration?  Maybe.  Or is it simply pausing to be together, and grateful that it's possible?  Probably more likely.

The reality is that I must prepare myself for the fact that it might not ever go away.  Research may or may not find an answer better than the marginal band-aid that currently exists.  And if it does not, the key is to smile and remember the words of Elder Joseph B. Wirthlin, saying, "Come what may, and love it".  (LDS General Conference, October 2008)

Here's to another ten years....or maybe fifty!  As one friend pointed out to me today, it's been 3,653 days so far (3 leap years in the past 10 years)....and let's hope and pray for many, many more.