Keep on Keeping On
By Marie Shanahan, CEO
ON/AVN Support Group Int’l Association, Inc.

In 1995, an event occurred that forever changed our lives. Prior to 1995, my husband, Rich, and I were two very active, healthy, highly motivated ‘super-achievers. Our lives were full of work, fun, friends, martial arts students and fans, and more than our fair share of laughter. Then, I got sick, very sick. Our world started to unravel, and the journey we have been on these past 10 years has been filled with incredible pain, both physical and emotional, and more than a touch of true horror for both of us. But,we have thus far survived and I’d like to share our story with the world. I was misdiagnosed and treated for Crohn’s disease, an illness it turned out after all that I did not have. Over the course of several months, my body disintegrated to a mere 85 pounds and I eventually was a hair’s breadth from death. Treated with all the wrong medications, my illness caused me to lose my entire colon and a good portion of my small intestine; I had somehow contracted a flesh-eating microbe, called Entamoeba histolytica that literally ate my colon alive. To everyone’s astonishment, I managed to survive, but our ordeal was far from over.

Eventually, after six surgeries and several months in the hospital, I returned home only to discover that I had lost the ability to walk. Thinking it was muscle weakness from being bedridden for so long, I didn’t think too much of it at the time. But, as more time passed, my legs were getting even worse: Eventually, I could no longer stand up or put any pressure at all on them. The pain was so intense I would go into fits of vomiting. So, together we went on another round of doctors’ and specialists’ visits and it was determined that I had some rare, odd-ball disease called Avascular necrosis, or osteonecrosis, as it is called more often today. (I have since simply shortened that to ‘ON/AVN.’) We were told that my bones and joints were dying, and there was no cure for it. Worse, it was caused by some of the powerful drugs and medications I had been given in error: the cortico-steroids such as prednisone, medurol, solumedurol and others.

I lost the ability to walk, to drive to work, and as a result, I lost my job. Our combined income plummeted to just one paycheck, sending us into an eventual financial downward spiral from which we nearly did not recover. Consigned to a wheelchair and crutches, it seemed my great victory over death was almost a cruel joke: I was alive, all right, but crippled very badly. I felt like a total burden, a horrible way to feel. Even worse, I faced an ongoing, long line of bone surgeries, some of them experimental, which were excruciatingly painful and from which they took a long time to recover. There were times when I wondered “Why am I doing all of this? To what end, or purpose?” But I persevered. You see, I had someone in my corner that absolutely refused to allow me to give up: he was, and still is, my best friend, my Sensei, and my husband. Having studied self defense under him for several years, I knew that the Martial Arts mentality was very powerful as well as mystical, and I personally have seen him accomplish incredible things. I figured there must be something to this, so I became determined to refuse to allow myself to give up. Besides, it would have been a great dishonor to him if I did give up: he never once even considered it. So, how could I?

One evening, seeing the wistful, sad expression on my face as his students left his martial arts studio and knowing how much I missed ‘sparring’ with him, he suddenly spun me around in my wheelchair and said, “Marie! Do this.” He showed me a little movement that I could do with my chair, and by holding onto his arm, I actually tossed him across the room! As he bounced off the refrigerator, I started to laugh and feel a bit hopeful again. Then he showed me another movement….and another….and I was hooked! We continued to “play”, as he always called it, until I had the movements down pat. I somehow did not feel quite so vulnerable any more, and I certainly did feel a bit more like the ‘old’ me, the one who could accomplish things. That is when the idea hit me: I wanted and needed to find out more about my disease and, most importantly, to find a way to fight back.

Two months later, my first webpage was born! I had to teach myself to do webpage production, but I figured what the heck. I had nothing but time on my hands, so I also figured, what have I got to lose? From that simple webpage a great miracle happened. It took ten years, and thousands of hours of our combined time, talent, work and effort, but from that simple page an entire organization came into being. Slowly, day by day and often moment by moment, our little support group began to grow. So did my website! Today, we are an official non-profit organization called The ON/AVN Support Group Int’l Association, Inc., with a membership that spans the globe. Over the years, I have corresponded with thousands of ON/AVN victims, many of whom are still in our organization. At one point, I was also the Executive Director of the National Osteonecrosis Foundation, from Johns Hopkins University, for five years, but left that post in 2004 to concentrate on making our group a real non-profit organization. But, I clearly did not do this alone! Many times, Rich stayed up the entire night to rebuild a crashed hard drive or system, so that I could continue my work the next day. He never once complained; he never once walked away. And, he never once missed a day at work because of it. His example only drove me onward with more passion, more resolve to succeed. All this we accomplished without my ever having to leave the safety and comfort of our home, thanks to his dedication and belief in me, and in us.

Then,through Martial Arts,and once again my wonderful husband,I met Bob Wall who graciously agreed to become our organization’s official Spokesperson. Although Bob does not have this disease himself, he has a heart as big as all outdoors and was so moved by our story that he readily consented to be our official spokesperson. To date, I have had three joints replaced and consider myself partly bionic. My entire mouth also had to be rebuilt; my surgeries now total somewhere between 25 and 30. I am now walking again, thanks to my artificial joints, and loving it!

I still have more joints that need attention, but in all honesty, I am too busy helping those in our association to worry about my own pain We have some mighty big goals ahead of us, the most important of which is the research project we are co-sponsoring with The Hospital for Special Surgery, Manhattan, NY. As soon as we raise the 170K they require to get the project off the ground, we can begin to learn why ON/AVN happens; and perhaps, even find a cure. It is a sad fact that today most new victims are well below the age of 30, as the disease robs them of their youth, and often of their hopes and dreams. We need to turn this around; and I know that just as that sad woman in that wheelchair found out one evening as she re-entered the martial arts field, thanks to her wonderful Sensei-in-shining armor, anything is possible! To learn more about ON/AVN, please visit our website at http://osteonecrosisavnsupport.org

Epilogue:

Marie currently studies Martial Arts for the Disabled with Professor Ronald Duncan, one of the founding members of the WBB, as well as with Rich, in a special program Prof. Duncan designed especially for people with ON/AVN or any type of bone or joint disorder. They are working on producing a video which will become available to people with disabilities of the musculo-skeletal system.