Beating the Odds

By Scott Crisci

Every day, Scott Crisci remains a survivor and conqueror of multiple sclerosis and ulcerative colitis. For over two decades, Scott used the US health care system merely as a starting point for a larger strategy to beat these conditions. In this, his first book, Scott tells the story of his life and how he has learned to remain actively in control of where his life goes.

• Language: English
• Publisher: BookBaby
• Release date: Jul 1, 2013
• ISBN: 9781483501987

Book preview

Life.

1

You never recognize real trouble until the second time you see it. I mean, how do you recognize something you’ve never seen before? When we’re young, we’re still trying to develop a measure between what’s serious and what’s Serious.

Have you ever had to tackle something awkward when you’re young? So much about medicine is awkward. Symptoms can be embarrassing and there aren’t many people around who make a good receiver for much of that information. Part of it is just the information itself. It’s telling another human about something personal, abnormal and embarrassing. It’s a burden that’s placed on you, and the heaviest part of that burden is watching someone else’s face as you place it on them.

Because that leads into the second fear, which is worse. After you admit to anything seriously wrong with your body, you change categories. You become one of that other, smaller group of people. Be nice to them, they have something wrong. And being nice to them takes effort, so try not to be around them too much. And don’t give them a hard time or kid with them or do any of the things that normally bring friends together.

That distance is a killer. You don’t want to be in that other, smaller group. You want to stay with your friends. Funny part is, looking back after this many years, it becomes pretty clear that the small category of other is probably the majority. We all have our deal, something unusual, something to handle. You know what yours is. But when we’re young, we’re the only one.

And then there’s the third fear, which exists only inside us and couldn’t be brought out if we wanted to. The admission that this might be something Serious. Maybe if I don’t mention this, it’ll go away next week, and then it’s back to normal life. Imagine if I’d said something, made a big deal of it. Of something that turned out to be nothing. Maybe this happens to lots of people. Or maybe it just happens to me. Either way, speaking up isn’t a great option. So I’ll just keep on keeping on. Colds, flu, cuts and scrapes, they all stopped being an issue when I added enough time to the mix. Why couldn’t this be the same?

Oh please, let this be the same.

After a while, the fear offsets the shame. We’re so proud to round twenty, to start looking and acting like an adult. But the fear drives us back, when we can’t stand alone and we need someone to turn to. It’s still too early for most of us to have our own families to turn to, and even if we did, they’d be far too young. So we have to reel in our new maturity. Take a step back to what we were. We go to our folks.

I think I got a bit of an out because my mom was a nurse. There was something legit about bringing medical issues to her. It’s consulting a medical professional. Not going to Mom! Okay, I was lucky. For me, it could be both.

Do you have someone to go to? It’s key, and not just for the release of not standing alone. Sometimes we need to stand alone. There’s times when that’s healthy. But from a very practical perspective, there are certain functional things we can’t do – like be conscious during surgery, for instance – where you need someone else’s eyes to be open and looking after matters.

I was twenty, so I went to Mom. All of my new life, college, basketball stars, parties and the great wide real world, I put it in a jar for a moment, swallowed my pride, and went to Mom. I didn’t know at the time that that jar wouldn’t open again. I was just going to duck under the family roof for a minute to get out this one unspeakable problem, to bury it in a nurse’s medical expertise, and then walk away from that ugly, awkward moment.

Mom, I’m bleeding rectally.

I think that’s actually the word I used. It’s a clinical, sterile word for specifying how my body was going wrong. I couldn’t be bleeding out the nose or ear, or somewhere manly like my shoulder, I was bleeding out the butt. Great.

As difficult as it is to raise a problem like that with another human being, it was an impossible symptom to ignore. That annoyance was a ridiculous little door, through which some deadly serious horror, some ghoul, was creeping. The question that stares you in the face is which one it might be. Anemia? Some exotic parasite? Oh, please don’t even say the C word.

Bless our parents, Mom the nurse had advice that was quick and sure. I was hustled off to a gastroenterologist to begin a series of tests which would, some times more than others, continue for the rest of my life. These weren’t the normal sort of tests which end in a waiting room or a nervous week by the phone. I thought they would be, but I’d advanced to another level without realizing. These were tests that lead to tests. That’s a totally different world.

Whether the tests began or ended seemed only vaguely related to the information we received. At certain points in the journey, information just showed up. Maybe good, maybe bad, sometimes reeling in earlier information, and maybe replacing it. Maybe not. The first definite point brought to us was that I had a condition known as ulcerative colitis.

It’s a term that means absolutely nothing to a young person, a fact that took my mind prisoner the minute the phrase left the doctor’s lips. I had to know. I had to find out. I needed to tackle everything humanity had found about ulcerative colitis, wrestle it to the ground, and beat it until it said uncle and told me its secrets. Knowledge isn’t always power, but when it’s all that’s on offer . . . I don’t know about you, but I needed everything I could get on this disease that was suddenly sharing my life and crowding me out.

Put simply, my large intestine was eroding itself away. But it was taking the long route to disappearing entirely, making stops at a few separate, unique, agonizing locales on the way to the final destination. All of which was clearly spelled out in the tons of text that thousands of doctors can create over a couple hundred years. One thing they made clear very early: there is no cure.

Instead, doctors follow a two-step plan. First, try to induce a state of remission. Second, try to maintain that state as often as possible. Three separate medications were prescribed at that time, all to be taken simultaneously. The overall goal is to impose an anti-inflammatory influence, keeping the symptoms from growing out of control, and keeping my plumbing from breaking down entirely.

Side effects are common with these three substances. My body made clear very quickly that it no longer wanted to have anything to do with any high-fiber food. Also, vegetables weren’t tolerated. That’s the devious part of the disease. Just when your body is sick, it stops taking in the foods it counts on to make you better.

The other foods available don’t get a great reception either, they’re just preferable to absolute agony. Meals became like living with an abusive parent in a small house. The next beating is either happening now, or not far off. You try to get things done during the good hours, just