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CHAPTER 1

Not Dying

Looking back today, I know Scleroderma prepared me to believe I can do anything or at least give it my all in trying. Doctors gave me a death sentence, but I refused to listen. I fought back because that's what I do. When life pushes against me, I push back harder. Which is why, on the heels of the global financial crisis of 2010, I started a business in a field largely uncharted. Many thought I was crazy, but when you have walked through hell like I have, it is all a matter of perspective.

I've experienced excruciating pain, had medical treatments that would take down the strongest of people, and faced, head on, a disease that wanted me dead. It is a miracle I am still here, and because of that, I realize there isn't anything in my business I can't handle. Nothing comes close to what I have been through with Scleroderma. It is this perspective that makes me a good CEO and is the key reason my company is so successful today.

Death Sentence

The first 39 years of my life, I was the picture of health. Active, in good shape, and never needed more than an aspirin for a headache. Then all of that changed. A disease I didn't know about silently attacked my body. After only a couple of months, my symptoms went from mild to severe. The worst part was my hands. It felt like somebody stuck a straw under my skin, blew air in there, and made them swollen and hard as rocks. My hands ballooned, swelled, and became so tight the skin wouldn't move at all. Then my fingertips started to rot from the outside in. My pointer fingers and my middle fingers had skin ulcers called infractions. Parts of the skin would fall off and then the skin underneath would turn dark, greenish-black from the gangrene. The physical pain was excruciating, unlike anything I had ever experienced before. Mentally, I had no idea how to go on.

I would wake up in the middle the night screaming in pain, crying and begging my husband to have the doctors cut my fingers off. The two Fentanyl Transdermal (Morphine) patches I wore all the time, along with a laundry list of other types of drugs, were meant to help me maintain some kind of quality of life with less pain. They weren't working.

In 2005, my life changed. I remember watching the nurse practitioner read a document in my file, look down at the ground, then shake her head as she matter-of-factly told me, "It's not good. You have Scleroderma, and given the type, you have 12-18 months to live. I recommend you get your affairs in order."

She confirmed what I had guessed, I had Scleroderma. A disease I could hardly pronounce let alone understand. She explained there were things they could try, but it didn't look promising. I couldn't believe what I was hearing. I wanted to yell at her? to shake her. Try? This was my life, not some new flavor of ice-cream. Her tone and her actions gave me no hope that anything they would try was going to work. I remember thinking that great advice from Yoda, "Try? There is NO try." A saying from one of my awesome mentors also ran through my head, Honey, try means lie. Just do it.

This was the moment I learned all the pain and suffering I had endured the past of couple years was a result of scleroderma, a rare disease which caused the hardening and tightening of the skin and connective tissues. "Sclero" means hard, and "derma" means skin. My type (diffuse systemic scleroderma) was tough to treat because it had already started to attack my body, not only on the outside, but on the inside as well. My lungs, GI track, and eventually my heart would be adversely affected. There is NO KNOWN cure. The prognosis was grim.

I left there terrified and convinced I would be dead in 12 months. Once I got in my car, I sat there crying. I didn't want to die. One year was not very long. What could I do in those 12 months? I wanted to see my daughter graduate from high school; I wanted to grow old with Rocky, my husband of two years. I was only 41 years old, and I was not done, not by a long shot.

After two long years of not knowing, I finally had a diagnosis and was told I had, at most, 18 months to live. Trying to wrap my brain around what the outcome might be proved more than my head and heart could handle at that moment. When I got home from the appointment, I rushed into Rocky's arms. He comforted and consoled me while I explained what the nurse practitioner had said. Rocky is an engineer and always good at analyzing a problem to find a solution. The deeper the problem, the more of a challenge he saw, and the more determined he became to find a solution.

Although he couldn't make the disease go away, he did help me calm down and said, "We will figure this out together. One step at a time, one doctor at a time."

That evening I needed my life to feel as normal as possible. Usually I met with my like-minded friends on that night of the week, so I hopped in my car and off I went. Rocky was incredible at addressing my immediate concerns, but now I needed someone to help me with my long-term fears. On the way to the meeting, I pulled over on the side of the road and called my daughter's father, my former husband, who lived 1,800 miles away in Maryland. Even though we were divorced, we always kept a strong and ongoing mutual respect for each other. We had an agreement that even if the marriage didn't work, we would remain friends. Choosing to be co-parents to our much-loved daughter as a top priority.

I explained to Dennis, my daughters' dad, that I was seriously sick with a fatal, progressive disease I had never heard of, and I had 12-18 months. He knew I had been extremely sick the previous few years and was, of course, concerned.

"You need to take our Vicky and raise her," I told him.

"Betsy," he said. "You may in fact have a fatal, progressive disease that wants you dead, but I know you, and I'm not buying it. You keep her there with you."

"But I can't do it. Didn't you hear me? I am going to die."

"I heard you. But you are going to raise her, watch her graduate high school, and then so much more. You are a good mom, and it will be okay."

My Early Years

In a strange way, I think my childhood prepared me to fight this disease, and the disease taught me to believe I must reframe my vision of myself, my abilities, and my mission. My childhood made me a fighter, one who doesn't give up, and showed me how to live life being unstoppable.

I was a kid who grew up on the right side of the tracks with parents who, in the long run, made me tougher and stronger. My childhood can be best described as being dragged up instead of raised. To the outside world, our family seemed normal, but from the inside, it was insanity pretty much every single day. I grew up in upstate New York. My parents both had PhD's and were incredibly book smart folks. Early on, Mom was a school teacher, then she went to law school at 39 years old and became a lawyer and judge. Dad was a mathematician who taught statistics at Syracuse University before becoming an industrial psychologist. But outside of work, they both suffered. My father was a raging alcoholic, and my mother had deep and serious mental illness along with rheumatoid arthritis.

We had the money we needed as a family to keep up the outside image. However, all the money in the world couldn't stop what happened behind closed doors — alcoholism, all types of abuse, the things my parents said to me, and even more challenges due to my undiagnosed learning disorder. At an early age, I had to learn to stand on my own two feet and not rely on help or support from the adults in my life who should have been there for me.

I have a saying I learned in my 20's that helps me avoid becoming a victim to my history: look back, but don't stare. That's how I feel about my childhood — the parts I remember, anyway (there is a lot I have blocked out, thank God!). As a result, it has made me a stronger person today.

Rippin' and Runnin'

My drinking and drugging started when I was 13. But when I hit 16, my foot slammed down on the throttle of life, and I drove full bore toward self-destruction, indulging in bad choices every day. No one could tell me what to do. I ran around until all hours of the night and morning, staying out for a week at a time, proving nobody could make me go home. It was more peaceful if I wasn't there anyway, and the insanity going on between my folks meant they didn't care.

After living 11 years in the same house, and my entire life in central New York, my parents moved us hours away to Columbia, Maryland, for my senior year of high school. Dad had lost his job teaching at SU and found a new career in Washington, DC. Even though circumstances allowed him to wait one more year for me to finish 12 grade in the place where I had spent my entire academic career, I was uprooted. Everything familiar, everything I knew, went away. My answer was to completely zone out and rip and run even more by drinking and drugging harder, being more disruptive at home and at school, and increasing my already intense rebellion up a notch. I became unstoppable in a very unhealthy and self-destructive way.

In June of 1982, at 17 years old, I graduated, and within a week, I moved out of my parent's home. Quickly, I found my happy place working in the bar business, as these were and continue to be my kind of people. I simply love food service folks! Toughness and strength are prerequisites for success in the hospitality industry. It's a work hard, play hard type of mentality. I was tough. I am still tough, but I was tough and stupid back then. I worked 60+ hours a week and found myself surrounded by big-money, crazy drinkers, drugs, music, power, and prestige. It was an absolute breeding ground for insanity, and it fit me like a glove. I had found my home.

My day started at 4:00 in the afternoon where I was a waitress, tended bar, and even worked as a DJ. We'd close-up around 2:00 am and then have our own party. At six or seven in the morning, I'd stagger home, pass out for a few hours only to wake up and do it all again. I lived in a constant stream of humiliation, denial, and regret, having to apologize for the words and actions I could remember taking place while I was wasted. All the drugs and alcohol caused big chunks of time to be lost without any recollection of what happened. Since this was a time before text messages, twitter, or social media, there was no record for me piece the lost bits of time together. I was slowly killing myself, one day at a time. For three plus years, this destructive schedule ruled my life. I felt powerless to care and do anything about alcoholism and addiction.

About half way through my 20 year of life, a moment of clarity hit me. I think God spoke to my heart, If you keep going like this, there is not going to be much left of you. I barely functioned. My life had been spinning completely out of control, and something needed to change.

In 1984, I watched my dad stop drinking with the help of some newfound friends and saw how much it changed his personality for the better. It inspired me and gave me hope that maybe, just maybe, I could do the same thing.

On May 3rd of 1985, it became clear to me that I stood at a jumping off point in my life, and the time was right. So, I took a leap of faith and did something that still serves me well today in life and business. I asked for help. When I summoned the courage to finally reach out, I went to where folks go to get help to stop drinking and drugging. The heroes there welcomed me with open arms and accepted me exactly where I was.

They gave me a cup of coffee and said, "Sit down, honey."

"We understand how you feel."

"Time to suit up, show up, and grow up."

"Let us take you for ice cream; everything is always better with ice cream."

"We're going to give you new tools and teach you how to be a sober person."

With their help, I found a daytime sales job in the restaurant industry I already knew so much about. Unlike the bar scene, it allowed me to pursue healthier life habits. I began creating a new normal for myself and got by with a little help from my new group of friends. Using the new tools they introduced me to, along with spiritual help, my thoughts shifted from drinking and drugging to pulling myself together to become a different Betsy. Even though it hasn't been a piece of cake, from that day forward, I have been sober every day since and no longer rely on alcohol or other drugs to help me cope with my problems.

As I got older, life settled down. I had my daughter, got married, and I was determined to be the mother I never had. I wanted my daughter to know she was safe, loved, and the most important person in the world to me. But even though I went through the actions and said all the right things, deep down in my core, rage simmered, and a sense the world owed me still lurked in my thoughts.

Finding Hope

As I hung up the phone with Dennis, I sat in the car and lost it. Sobs wracked my body as I processed all of it. But despite the devastation of this news, the words from both Rocky and Dennis looped in my mind, and I started to think maybe they were right. After all, these two men knew me better than anyone else in this world and knew I was tough. Maybe, just maybe, I could fight this disease and beat this terminal diagnosis.

Sitting there in the car, I experienced every emotion possible. I wondered how this happened. Did I do something to bring this on myself? For the next three months, I allowed myself to wallow in self-pity and be so mad at God I couldn't see straight. I wanted to know why He brought me here, just to drop me on my ass. I kept thinking, Are you kidding? This is it? Screw you! (I have a God big enough that I can say "screw you," and God's cool with it, and I'm cool with it).

Being an advocate for my own health care, treatment, and game plan became the number one priority in my life. It was time to take the principles that got me sober and apply them to living with the disease of scleroderma and focus on one day at a time. Using the idea of getting help from others, I joined the support group for those living with Scleroderma. I went to listen, learn, and eventually give back. I went doctor shopping, in the best possible sense of this term, until I found the one who refused to throw in the towel.

He looked at me and said, "Yes, it's systemic sclerosis scleroderma. But I won't give up."

Right then, I knew I found my next doctor. I finally met somebody who believed I could live, making all the difference in the world. He didn't want to cut my fingers off, and by then, they were black. He was willing to try a radical procedure to open up every blood vessel in my body with the hopes of restoring circulation down to the tips of my fingers. To my relief and joy, it worked.

Although the gangrene had healed, the scleroderma was now killing me from the inside out. My hands felt like immobile claws. I couldn't button or zip up my own pants, could not do normal self-care like brush my hair or shave my legs. I couldn't even take the lid off a to-go cup of coffee. My face was so tight that my ears were pulling away at the earlobe, and blood would drip down the sides of my face daily. My skin felt as hard as stone and was hypersensitive to touch. If someone barely bumped me, I'd start crying because the pain was intensified from the nerves now resting on the edge of my skin. I walked around feeling like a leper. Not being able to hug my daughter or husband without it causing excruciating pain devastated me. I desperately wanted to give up but knew if I did that, I'd be dead.

To say my marriage, now only three-years old, was not going as planned was an understatement. Neither Rocky nor I signed up for this. In sickness and in health is easy to say when all appear healthy, but I married the perfect partner for me. He believed I would recover and be OK no matter what the medical community told me. His love, strength, and determination helped me whenever we received news from the doctor that scared me. At times though, I could see it made him angry because he couldn't fix it or sad because he didn't want to lose me. Who could blame him? I was wasting away before his eyes, but he was intent on finding answers and new options at every turn.

I went to the University of Colorado Hospital Scleroderma clinic and met my new doctor. It is an amazing teaching hospital in Denver, Colorado.

"I need a new course of action," I told the doctor. "I have to watch my daughter graduate from high school in 2009. I will do anything to stay alive three more years to see that happen."

He said, and I will never forget the exact words as long as I get to live, "How would you feel if we hit you with the bus?"

"You can hit me with the biggest bus you have, if it will keep me alive. I am willing to do anything if it gives me a chance. I am all in."

He wasn't kidding about the impact and harshness of this new treatment. It sent me back to my couch where all I could do was concentrate on not dying. Every day I woke up, I would try to focus on one small thing I would try to do each day. It gave me an entirely new appreciation for one of my favorite slogans, One Day at a Time.

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Excerpted from "Unstoppable"
by .
Copyright © 2018 Betsy Craig.
Excerpted by permission of BCGA, Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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