Book Excerpts

Chapter 1: You Don't Tug on Superman's Cape

For several seconds, it was hard to see. But as my eyes eventually accepted the light, I scanned the floor for the misplaced toilet tissue and found it lying between the toilet bowl and the shower. As I stooped to pick it up, I noticed the tissue was stained red. Confused, I picked it up and proceeded to drop it into the toilet bowl. Then I noticed the toilet bowl itself. The water in the bowl was a deep scarlet. The color was unmistakable. It was blood. My blood. My heart raced. I was shaken. I was scared. Something was wrong-terribly wrong.  Superman's not supposed to bleed!

Chapter 2: Anatomy 101

"I was convinced my own imagination would have me dead, buried and forgotten before the morning sunrise. Now was not a time for thoughtless reaction. Now was a time for thoughtful preparation."

"Gastroenterologists, stool samples, colonoscopies, invasion -- I needed the good doctor to talk my language for a minute."

Chapter 3: Good News, Bad News

First, the good news. Phil, you will be happy to know that you almost certainly don't have colon cancer. We will send the biopsies to a pathologist, but we feel sure they will come back clean."

What a relief! That was my greatest concern. But, what's this bad news he's talking about?

"Well, if I don't have cancer, what is the problem?" I asked.

"That's the bad news. You most certainly do have ulcerative colitis.

"Phil, the bad news is that you're going to have to keep fighting this thing. And there are sure to be some tough times. On the other hand, the good news is that now you won't have to fight it alone. We're going to do everything in our power to help you. Starting now."

Chapter 4: Doing What Has to be Done

As sick as I was physically, I was in even worse shape emotionally. For more than nineteen long months I had fought the good fight. I had struggled through pain and suffering with very few public complaints. I didn't whine to others about my troubles, because in my heart of hearts I was sure inner courage and intestinal fortitude (raw guts) would eventually win out-the guts it took to look this disease in the eye and not blink. The guts to take whatever this disease had to dish out and to keep coming back, again and again and again. I just knew I could do it. I knew I could beat this thing. Superman never gave up. 

But there in a fancy hotel room in the heart of our nation's capital, I came to the stark realization that it takes more than guts. For months I had done all I could do-and yet it was never enough.

Chapter 5: For Better or For Worse

"It proves you're human. That's all. It doesn't mean you are weak. It doesn't mean you are any less a man."

"Phil, I will take you any way I can get you. Remember our promise to each other? For better or for worse. So will the kids. We love you. And because we love you, we want what's best for you.

"It hurts me to watch you suffer the way you have been. Now if there's no alternative to the suffering, so be it. I'll be here for you. But we both believe that some sort of surgical procedure may help you. I think you owe it to yourself-not to us-to see if there's anything you can do to get yourself better. I'll tell you right now, you can count on me to be with you every step of the way. But then again, I'll be here for you no matter what happens.

Chapter 6: Let's Rock and Roll

"Doc, my reason for considering this surgery is fairly simple. I can't imagine continuing to live like I am now if any other options are available. Right now, the quality of my life stinks. I'm in near constant pain. My energy level has never been lower. The lion's share of my thoughts center around when my next mad dash to a toilet will be. And with each passing month the problem seems to get worse."

"Every aspect of who I am has suffered under the weight of this disease. I am not the husband, father, friend or professional that I used to be and that I want to be again. I am ready to do something to bring this situation under control. I know that Prednisone is not the answer for me. I am simply not willing to gamble with the long-term risks. You've been honest with me up until now. So here's my question for you. Can the surgery you've described help me or not?"

Dr. Truesdale paused before answering. He continued to look directly into my eyes.

"Yes, Phil, I think surgery can help you.

Chapter 7: How Can I Help You?

"Phil, how can I help you?"

I had heard these same words so many times in recent days from family and friends. All were sincere and well meaning. Yet when Dr. Lavery spoke the words, I knew he could help.

"Doc, you can give me my life back. I am told that the surgery you perform here cures ulcerative colitis. I want to be cured. Do you think you can help me?"

Dr. Lavery smiled and said, "I believe we can."

My heart soared.

Chapter 8: With A Little Help From My Friends

They had flown from Florida to be with me. I was stunned.

That night the attitude was nothing short of festive. The eight of us broke bread together in the hotel's institutional restaurant and enjoyed each other's company.

Later we retired to one small hotel room. There, eight of my favorite human beings lounged on the floor, sprawled across beds, leaned against walls-all laughing uproariously for hours at one story after another. My involvement was limited. I was able to participate in about half of every other story.

You see, by then the GoLYTELY had kicked in and was working marvelously, thank you very much. But as I sat straddling that porcelain throne preparing my bowel for its "coming out party" the next morning, I could clearly hear the joy and the rolls of laughter coming from my family and friends. The scene was one of stark contrast to those lonely, frightening nights on the toilet I recalled so vividly just over a year and a half earlier when my illness was on the verge of discovery.

Chapter 9: The King and I

What a day this has been. I arrived with my personal entourage at the Cleveland Clinic from half way across the country, expecting to have my physical needs attended to by some of the premier healthcare professionals in the world.

Unbeknownst to me a King has also traveled to the Cleveland Clinic with his entourage from halfway around the world to have his physical needs attended to by those same premier healthcare professionals.

Imagine living in a nation where world class healthcare is available to prince and pauper alike.

Chapter 10:  Left Holding the Bag

Now I found myself leaving town with a burden lifted. The first half of my surgical revitalization was complete. Now came a time of healing in preparation for stage two.

As the city of Cleveland and the Cleveland Clinic disappeared behind us, I took inventory of my recent experience. Behind I left my ulcerative colitis and the diseased colon that was inflamed by it. Behind I left the fear and anxious anticipation of major surgery. Behind I left a mask of false bravado and manufactured courage.

Infinitely more important than all those things, I left holding "the bag"-and clutching the newfound health and hope it represented.

Chapter 11:  My New Reality

"They don't want to see it," he said breathlessly. "But I do. Show me."

"Okay, I will. But only on one condition. You've got to promise me that if you have any questions, you'll go ahead and ask them. I want to be sure you understand as much about this whole thing as possible. Is it a deal?"

"Sure."

I unbuttoned my shirt revealing the large gauze dressing loosely covering my wound. Slowly, I peeled the dressing back. As I did, Joe seemed at first mesmerized and then a bit taken aback by the full magnitude of what he was seeing. A slight involuntary grimace appeared on his face.

"Wow," he said with more shock than amazement. "That's a lot bigger than I expected."

The give-and-take session with Joe helped me realize there are very few truly original questions. The questions Joe asked me were the same ones I had asked others, and the same ones that tens of thousands of people around the world continue to ask daily. The quest for answers-and understanding-drives us all.

Without sufficient answers to their questions-or sources to rely on-the unknowns these individuals are left to deal with can be emotionally terrifying and psychologically paralyzing. That is certainly true of those who suffer from ulcerative colitis and IBD, along with those who love and support them.

I discovered that sharing information and breaking down barriers is easier when both parties are honest and genuinely interested in the welfare of the other. Joe cared about my health and well being. I cared about Joe's understanding and peace of mind. As a result of our shared concern for each other, the communication and bond between us was enhanced.

Chapter 12: The Next Big Thing

But then I came face-to-face with IBD and the realities of living with a chronic illness. I didn't enlist. I was an unwilling soldier. I delayed joining the battle until it was obvious that it was my own blood that was being spilled. But once the battle was joined I gave it my all.

This enemy was unlike any I had ever encountered. It was faceless. It was merciless. It resided deep in the inner linings of my gut. But the true battle was for my mind, heart and spirit.

The battle was fierce. In the end my colon was lost. The ironic twist, however, came in recognizing what was gained by way of the loss.

During that two-year struggle, I gained a new appreciation for what it meant to suffer. As a result, I became more aware of the sufferings of others. Through struggle, I gained a new appreciation of support. I now look for positive ways to support others. Through struggle, I gained a new appreciation of generosity. As a result, I am now more ready to give without expectation of receiving anything in return.

These revelations have yielded extraordinary insights and opportunities for growth. During the battle, I eventually came to the realization that I could fight in isolation-but I could never win. To win I needed allies. In the end, I survived my ordeal because I allowed people who cared to join the battle. They strengthened me.

Now I have a debt to pay.

Conclusion

"I especially appreciated you telling about losing your colon. That must have been a pretty rough time for you. Have you gotten to the point that you feel sorry for folks who haven't gone through what you went through?" he repeated.

What kind of idiotic question is that? I thought. Nevertheless, I tried to remain professional and measured in my response.

"No, honestly I can't say that I have. In fact, knowing what I've been through, I wouldn't wish that ordeal on my worst enemy."

"Even if they could learn something valuable from it?" he countered.

Without the benefit of another word, this young man knelt down before me. In a matter of seconds he had unlaced his shoe, removed it and his sock and pulled up his pant leg. There before me was a horribly scarred foot, ankle and lower leg. I didn't know what to say. I just stood speechless.

He patted his leg while looking up at me and said matter-of-factly, "A farming accident. I was a teenager and I got my foot caught in a grain auger. It broke all the bones and pulled my foot totally away from the leg. The only thing that held it together was a few patches of hide and a couple of severely stretched ligaments."

"I've done a lot of thinking about this. I believe with all my heart that it was the best thing that ever happened to me. I actually feel sorry for people who haven't had something like this happen to them."

"Why?" I asked sincerely.

"Because they haven't learned the things you and I have learned. They don't know how strong they really are and they don't know where to find their inner strength.  They never really expect to experience any major adversity, so they don't prepare themselves for adversity should it come knocking. They don't know who they should confide in and who they can count on. They don't know what it means to really suffer physically and mentally. As a result, they have little empathy for others around them who are really suffering. Worst of all, they don't know how to accept their circumstances, adjust to them and get on with life."

His words hit their mark. He was absolutely right.

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