I Used To Have An Incurable Disease

Do you want to be tall, or do you want to be well?

My dad was serious. He was giving me the choice. I was 13 years old. Dr Lamb, had just given me the diagnosis for why I had ended up in the hospital with what turned out not to be acute appendicitis.

It’s called regional enteritis. But most people call it by its more common name, Crohn’s Disease. I’d like to attack it aggressively, with lifestyle changes and a combination of azulfidine which is a sulpha drug and prednisolone which is a steroid. Given your age, the prednisolone will most likely take about 4 or 5 inches off your height. It keeps the bones from growing.

What’s the alternative?

Well, most doctors treat Crohn’s by cutting out the affected portion of the intestine. But, we don’t really understand what causes Crohn’s. Often after surgery the disease comes back elsewhere. In fact, it’s the biggest worry about Crohn’s. We end up removing most of the upper intestine and people eventually starve to death.

But, you don’t want to do that?

No. I want to see if we hit it with massive amounts of azulfidine and steroids, if we can’t get it under control so that at least you can have a chance at a normal life.

That was the start of many years of doctor visits, blood draws, massive amounts of drugs, and months of bed rest. And slowly I got better. I abandoned spicy food. I cut out as much stress as possible. I learned some pain mediation techniques. And I resigned myself to being 5″ shorter than God intended and to a lifetime of living with a chronic disease. Crohn’s has no known cure.

I lost the height, but something strange happened on the way to that lifetime of chronic illness.

When doing international adoptions, the child has to be tested. Immunizations are sporadic at best in third world countries. Typically they are fairly routine. One particular adoption wasn’t so routine.

Your daughter tested HIV+. It’s not uncommon for children to contract the virus. We’ll send the blood work off to lab in the US, but that’s just a formality. I’m really sorry.

We were crushed, as you can imagine. So, now what? We had to decide if we could parent an HIV+ child. Would our insurance cover the drugs? Would it put our other kids at risk? Suddenly, we were confronted by the prospect of our entire world being turned upside down.

Nothing in business compares to the devastating news that a child is sentenced to a lifetime of illness.

Let’s move on to Networks. Jack, what can you tell us about the network status for our new location?

Not good. We do not have routers available. In fact, they won’t even be arriving until after you want to start training. I’m really sorry. We’ll continue to look for options, but it looks like we may be the team to cause you to miss your date.

There it was. Not a “worst case” we might be late, “best case” we get the equipment on time. Simply a “It’s not going to happen.”

And then, the miracles occur. A supplier suddenly finds an extra set of routers that just happen to be the same kind that we need.

Another time, we were not going to have the circuits we needed in time. Best case was 2 months after we were scheduled to go live. And then, a couple weeks later, we discover that we don’t need to do any construction to link up to fiber. Two months becomes three weeks.

Not every project gets blessed by miraculous updates, but enough do that it pays to plan for the worst and hope for the best.

And that’s what happened with my daughter. We fasted and prayed as a family. Our friends and church members fasted and prayed and when the second set of tests came back, the results were negative. She no longer had HIV.

Some will insist that the fact that she doesn’t have HIV and the fact that there is no known cure for HIV means that she never had it in the first place. She was simply misdiagnosed. To those people I tell the story of my Crohn’s Disease.

I eventually got better. By the time I was in high school, I was attending school nearly fulltime. I stuck to my treatment and medications and worked by butt off to attempt to have a normal life. And it worked. I was able to go and serve a two year mission for my church when I turned 19. I was able to attend college without any special accommodations. In fact, the disease went into complete remission.

And then, I found myself working for Microsoft in a very stressful job. I didn’t like my boss (I Finally Put Down The Rock.) And I was struggling at my job. And the symptoms started to come back. Not terribly, just a tingling in my lower right side, brought on by my increased stress no doubt.

So, I went to see a specialist before things got really bad. To test for the severity of an intestinal issue, which Crohn’s is, they give you what’s called a “Barium milkshake.” (If you’re lucky you get the milkshake. If you are unlucky you get something less pleasant.) The milkshake tastes almost exactly like someone ground up chalk and mixed it with a small amount of water. . .but, not as tasty.

A week later I came back to get the results.

Mr. Bliss, your results are negative.

What do you mean?

I mean that you tested negative for Crohn’s. And since it is incurable, it’s my professional opinion that you never had Crohn’s to begin with. I don’t know what stresses you are under, but Crohn’s disease is not part of it.

Of course, Dr Lamb was amused to hear that diagnosis.

I cut you open. I saw the results. I don’t know why you don’t have it now, but I will stake my professional reputation on the fact that you had it when you were 13 years old.

Miracles happen. They can happen in our personal lives, the lives of our children and in our professional lives. The world is much more complex than we can ever hope to understand. It’s governed by forces that we can only dream of.

I’m grateful that my project was the beneficiary of miraculous scheduling changes. I’m grateful that my daughter no longer has HIV. And I’m grateful that I was spared a life sentence of a chronic illness. And for that, I’ll give up being tall.

Rodney M Bliss is an author, columnist and IT Consultant. His blog updates every weekday at 7:00 AM Mountain Time. He lives in Pleasant Grove, UT with his lovely wife, thirteen children and one grandchild.

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