By Sandi Pearlman (Taken from the book “Sandy’s Journey with PSC Partners Seeking a Cure”, Mike Pearlman 2015)

As I’m sitting here writing this, I am mere hours away from my 33rd birthday. I suppose I could be out whooping it up, drowning the last of 32 in glasses of wine and beer held aloft by well-wishing friends and family.

…….To look at me, I look like an average girl, perhaps a little too thin, maybe in need of a haircut, but rather unremarkable all the same. No one would e ver look at me and think, well, that girl there is fighing an incurable disease.

And yet, that’s exactly what I’m doing, what we are really doing (minus the girl for some of us!). We’re fighters. We’re given an impossible task: beat an incurable disease and live life without letting it destroy us, and, still, we march on.

I had a pre-interview with one of the counselors on my transplant team. For those of you who haven’t yet had the pleasure, they ask you a lot of questions, try to guage how emotionally ready you’ll be when and if the big day comes, freak you about finances and planning and that kind of a thing.

In any case, my counselor (who would have a conniption if she read this and found I called her a “counselor” rather than a case worker or social worker) asked me what was the best thing that ever happened to me.

I responded that it probably hadn’t happened yet. She frowned and asked me, we, what’s the worst thing that ever happened to you. I said, well, it probably hasn’t happened yet. Her response, I swear, was that she thinks I need therapy.

See, she couldn’t understand why I wouldn’t say PSC was the worst thing that ever happened to me. She couldn’t grasp why it wasn’t waiting there on the tip of my tongue, like a cat after cheese and eager to drop from my lips. But the truth is, I find my answer hopeful that there’s more to come, that PSC isn’t the defining characteristic of my life.

Don’t get me wrong, PSC Sucks…….But the fact is, in some ways, PSC is both one of the best and one of the worst things in my life.

Before you all scream that the therapy idea was right, let me explain. The itching, nausea, RUQ pain, shortened life expectancy, etc., is more than a drag. It absolutely has to be worse than Chinese water torture.

But PSC also gives us an edge. We’re not like the dude on the couch in the lounge somewhere thinking he has an unlimited lifetime to make choices and say sorry and make love and dream dreams. We know life is precious. It’s ours for this day and hopefully for the next and, if we’re going to waste it…..

Well the truth is, there are days when I want to curl up in a corner and whine why me and bawl my eyes out until I’ve lost at least four pounds of water weight. But what’s the use?

At the end of the day, unless you’ve got a better connection to God than I do, yoy’re probably not going to get an answer. So, as 33 rapidly approaches, instead of wallowing in the have-nots of being sick and lacking energy and facing what could be years of poking and prodding and ERCP’s and colonoscopies and the like, I find myself smiling.

I still may need therapy, but PSC has taught me to appreciate what is good. I know who my true friends are, I feel the warmth and love as they and my family rally around me. I laugh as they jokingly refer to PSC as Pearlman, Sandi Cure. I think, all in all, I’m a lucky girl.

I may have a disease that requires a fight every single day of my life, I may be on a first name basis with more doctors than I can shake a stick at and have my own shelf in the pharmacy, but it also allows me to see all the things worth fighting for that might otherwise have gone unnoticed…..

I can be me without worrying what the world will think because I know every moment is precious and there’s no guarantee that tomorrow will be there……and if it is and I’m itching and exhausted, well, I know I’ve survived it before and I’ll most likely survive it again today.

2 thoughts on “The Glass Half Full

  1. Margaret says:

    Wow, over the past 7 years I have met so many amazing people who have become my family. My son died 9/27/2013, the life he lived prepared us both for this journey. Our faith in God and being connected to the Doctors and his transplant team. This site has allowed me to have a voice to encourage other and share Mike’s story. Living with PSC for over 17 years was the hardest part and knowing that a trap was needed if Mike was going to survive. In the years to come my prayer is that the doctors all over the world can case study other PSC medical records so they can compare their transplant. I was so glad this site was available when I needed it. I know I would’ve been totally lost. My family wasn’t really there when I needed them. So I found myself alone many times. After the first year my mom became ill and I her caregiver until she died. 102 What I dislike about PSC is it takes away the life of the younger children and their families are wondering what could they have done to help their child, wife or husband. When I think about all the people who have can in my life because of this beautiful group. I will always be grateful for Sandy. As long as I live I will always be a voice for PSC. My prayer is that one day we find a cure for PSC. I want to give a big thank to all of the Organ Donor all over the world for saying yes, The Gift of Life. May God continue continue to Keep everyone health. #PSC

    1. admin says:

      Thanks Margaret, you honour your son’s legacy in such a beautiful and encouraging way.

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