Crohn's patient thankful
for the priceless "gift of hope"

As was the case with former Miss America turned actress Mary Ann Mobley, the first symptoms of Crohn's Disease often surface when the victims are young -- typically between the ages of 15 and 25. The following poignant essay details one young adult's personal journey of pain, isolation and despair -- and how the caring long-distance intervention of Mary Ann Mobley and socialite Marylou Whitney fostered renewed hope and healing.
We've all heard inspirational stories of compassionate strangers magically coming into the lives of those in pain or need. These strangers are inevitably such incredible powers of example that they succeed in transforming the other person's entire outlook on life. It happens on OPRAH all the time. I just never thought it would happen to me.

I had been sick for a long time -- two or three years maybe. There was occasional pain in my abdomen. Sporadic high fevers. Blood when I went to the bathroom. But these symptoms rarely occurred together. Often they would develop and then vanish for a matter of weeks -- or even months -- before reappearing.

At first I assumed I had eaten something bad or had a touch of the flu. After all, if this was serious, why did this sickness just plague me occasionally? Anything that was truly grave would stay permanently, not disappear. It never crossed my mind that these were the early warning signs of a devastating intestinal disease. Besides I was much too busy to let something like this interfere with my lifestyle.

At 20, I was working full-time, saving money for college, training my two agility dogs, and enjoying an active, exciting social life. I was not about to confide my embarrassing health problems in anyone. For me, slowing down was not an option. In short, I was in denial. Big time denial. Then two years ago -- a few months before my 21st birthday -- the symptoms returned. This time, they came back with a vengeance and refused to go away.

Between May and September of 2002, my weight plummeted from just under 110 pounds to around 95. I began to run a fever of around 100 degrees on a daily basis and the pain in my abdomen gradually became so excruciating that I could barely walk the short distance from the front door to the end of the driveway to collect the mail.

The amounts of blood when I went to the bathroom were chilling. Only then did I reveal the full magnitude of my private suffering to my mother who insisted that I be thoroughly checked out by medical practitioners. A series of diagnostic tests were ordered, but my body refused to wait for the results to come in before it decided to teach me the lesson of a lifetime.

By the end of September, I could no longer go to work or take my beloved dogs for walks. I lay in bed for days with a fever of around 103 degrees in too much pain to even sit up. The doctor told my mother I belonged in the hospital, yet -- despite the unbearable pain -- I protested when she insisted upon taking me to the nearest emergency room. There she learned that I was dangerously dehydrated, bleeding internally and hallucinating. My condition was described to her as "life threatening."

After a few days of what seemed like endless testing, a specialist informed me that I had Crohn's -- a disease with no known cause or cure. The word "incurable" echoed incessantly in my mind. I wept, unable to comprehend that there was nothing that could be done to rid my body of this painful, debilitating invader.

I was given many prescriptions which added up to me taking around 24 pills a day. I was also given instructions for an entirely new diet. No caffeine, no fresh fruits or vegetables, no pasta or breads, no nuts, no milk, alcohol, chocolate, spaghetti sauce . . . the list went on for two pages.

My immune system was equivalent to that of a leukemia patient. I could not be around many people. I was told I could neither attend college nor to work that winter. I was officially classified as "medically disabled." Most heart breaking for me was my inability to spend time with and care properly for my two dogs. I had to depend on other family members to exercise and train them, my most favorite activities in the world.

My stress level skyrocketed. I just wanted to walk my dogs. I did not want to sleep 18 hours a day. I did not want to be sick every day. I wanted to eat normal foods and lead a normal life.

In retrospect I can see I was angry and, to a large degree, still in a state of denial. Those well-meaning relatives and friends of the family who attempted to reach out to me with brochures, articles or other information they thought might help me upon my release from the hospital did not get an exceptionally warm response. I was NOT like other Crohn's patients. I did not want to be labeled as a Crohn's patient. I was, I believed, too young to have something this awful happen to me. I did not want to give in to it by accepting that I was "one of them."

After months of feeling tired, isolated and depressed, I began seeing a relaxation therapist in nearby Saratoga Springs. The therapist helped me immensely when it came to learning techniques that would help me relax and control my stress level, but I still felt incredibly alone.

Besides not knowing anyone my own age with Crohn's, all of my friends were away at college. I certainly did not want to share details of my dreary bedridden existence with them when they called or emailed with exciting news of their campus activities and social lives.

Although looking back I can see that those around me -- including my parents, grandparents, some aunts and family friends -- were trying hard to understand what I was going through, they simply could not. Trapped in a weak body, I did nothing. This was not me.

By mid-winter my condition had not improved. My Crohn's was not responding to conventional therapy and I had to return to a hospital setting to receive medical infusions intravenously. This was when I was placed in contact with the most incredible and awe-inspiring woman, Mary Ann Mobley.

Just as one might see on an OPRAH program, this extraordinary former Miss America and Elvis Presley co-star came into my then dismal life in a most unexpected way.

My mother is a writer and was seeking a quote from Saratoga socialite Marylou Whitney for one of her articles when she happened to mention in a related correspondence that she was a bit behind schedule on a publishing project because I'd been ill with complications from my Crohn's Disease.

Within a few days, a hand-written letter arrived from Mrs. Whitney in which she urged my mother to contact her dear friend Mary Ann Mobley in Beverly Hills, California. If anyone could help me, she assured my mother, it would be Mary Ann Mobley.

As a prominent spokesperson for the National Crohn's and Colitis Foundation, Mary Ann could easily have passed my name along to a committee member and gone about her busy, glamorous life. Instead, she insisted that I call her at her private residence so that we could chat.

To say I was a bit nervous about calling Mary Ann at first would be an understatement. Within seconds of connecting over the long distance wires, however, my anxiety not only melted . . . it vanished into thin air and was replaced with a warmth and happiness -- and a sense of hope and renewal -- I never dreamt possible.

Mary Ann is not merely a spokesperson for the National Crohn's and Colitis Foundation -- she is a human being who has first-hand experience with the disease. Like me, she was only in her 20s and "at the top of her game" when she was diagnosed with Crohn's . . . and, like me, she had initially come close to despair upon being told that she was suffering from an incurable disease.

Over the next several weeks, Mary Ann insisted that I call her at her home � not once or twice -- but about a dozen times. Although we had never met, she talked to me as if I were her own daughter -- or, at the very least -- a long lost friend. Always patient, kind and in good humor, Mary Ann listened intently and I sensed that she genuinely understood -- and FELT -- my pain. At last, there was someone with whom I could discuss the most intimate details of my disease without feeling embarrassed or ashamed. The best advice she gave me was to take one day at a time.

My body and mind were constantly struggling to cope with one another, and I was battling them both every moment (waking and sleeping). I have never been very good at taking advice well, I liked to do everything "my way." But listening and learning from Mary Ann was different. She is proof that someone like me can lead a fulfilling, successful life despite having Crohn's.

Mary Ann gave me mountains of advice on certain vitamins, minerals, and activities that have helped her. She cautioned me on what I will have to be mindful about when eating out and traveling. All of Mary Ann's precious knowledge about Crohn's did not come from a book; hers was real, gained from harsh personal experience. And she spotlighted everything she shared with me in the most positive way.

After hanging up the phone following my first conversation with Mary Ann, I finally let out a breath of fear and pain that I had been holding for months. For the first time I was able to say to myself: "I am going to get through this." And I meant it.

Because of Mary Ann my courage has been renewed. I am able to wake up every day and not allow this disease to stand in the way of any of my dreams. Mary Ann is truly my inspiration and my heroine. I can never thank Mary Ann enough for her encouragement and support. She gave me a priceless gift: The gift of hope.

I only hope one day I will be in a position to return this gift by passing it along to another young person who is struggling to come to grips with the words: "You have Crohn's." I see taking college courses that will help me start a career in a related field as step one in the fulfillment of this mission.

CLICK HERE to read the story of Mary Ann Mobley's incredible life -- including the courage she demonstrated in breaking the silence about her own struggles with Crohn's Disease.