An Embryonic Stem Cell Celebrity?

I attended my first ever Lyme Disease support group meeting last week. I've never been drawn to meetings or groups. I especially steered clear when I was sick. Several of my long-term treatments afforded me the opportunity to mingle with others dealing with similar challenges. That was plenty of sick social time for me. I have always preferred to feel like crap and move on -- alone.

I was invited by a friend to go to her support group as a guest. She promised me it wasn't "that type of group." She was right. When I got there, I was introduced as a “special treat.” I’m still a bit uncomfortable with this type of attention. Although I have no fears of speaking in front of people, I have always been drawn to the glare of my computer screen as my audience. Or so I thought….before this. I am now compelled to speak on.

The meeting was emotional. A room full of people bogged down by one of the most complicated diseases I believe is known to man, are staring at me in awe. Tears are streaming. Eyes are engaged in disbelief. One woman speaks of her 17-year old daughter who can’t feel her legs. Another man tells his story of a 30-year struggle with Lyme Disease. A young woman just a bit older than me with strength of steel has been battling for ten years non-stop. Unfairness is hanging over the room like the thick pollution I struggled to breathe through in Delhi.

There is no “fix” for Chronic Lyme Disease. Patients use the best they have, which is far from good enough. There are antibiotics to help control the bacteria, which has often silently been given permission to grow (by being misdiagnosed or undiagnosed). At least that is something to help for one facet of this disease. But, what is available to heal the destroyed joints, brains, hearts, muscles, bones, immune systems (and the list goes on) that have been attacked? Western medicine holds no hope. Today, I am proof that embryonic stem cells can help.

The members of the group were kind, supportive and accepting. I cried unexpectedly as I told my story. I wished with all my might I could pack Dr. Geeta Shroff in a suitcase and bring her to the U.S. We need her here. We need stem cells. When I was little and would complain to my mom about any small injustice (my brother got more whatever than me), she’d always say “Who told you life was fair?” Unfortunately as we grow up, we realize this truth more and more. Everyone deserves a chance. Not just me. It’s the first time since I became ill that I have ever entertained the “Why me?” question. But I know the answer already. It is the same for why I got better as why I got sick in the first place. “Why not me?”

The group leader, a soft spoken and wonderful woman said she felt like she was talking to a celebrity. Me, a celebrity? As I continue on this path, I am constantly reminded of the purpose for my journey, and it travels far beyond my own wellness. As I spoke, I wondered what the thoughts behind those intense stares were. I almost feared that it was resentment, disappointment and worst of all “Why not me’s?” But it wasn’t. After the meeting, almost every single person came up to me and thanked me for giving them hope. At first I didn’t understand it. Clearly not every one in the room could or would go to India (although some were very interested). I've said it a million times and I believe it more and more as time progresses -- it's not for everyone.

I realized on the way home that India wasn't necessarily even the hopefulness these people discovered. Hope isn’t about doing, it’s about a feeling. These people saw that when my options were virtually gone, something from around a bend in life’s many roads made its way into my view. For me, it was the blessing of my baby stem cells. Maybe for some of the others, it will be that too. Or maybe, two weeks or months or years down the line, if they reach their end of possibilities, they will have faith that their miracle might be seconds from surfacing in a world where nothing seems possible.

I hope I have the opportunity to speak at more meetings and maybe even conferences. Part of me is letting go of so much Lyme life that used to be. But, I don’t want to let go completely. It was an amazing part of my life that has brought me to incredible places of learning and living. The group leader asked a question at the end of the meeting: If you had a second chance, what would you do?

We went around the room and gave our answers. I didn’t have to contemplate mine at all. It came out of my mouth as if it had always been there, just waiting. I said I wouldn’t do a single thing differently. I wouldn’t have changed even the most physically painful hours of my life. Everything that happened has brought me here, to this place I am today, and I wouldn’t give any of it back. A girl who is like a little sister to me was next to give her answer. We went through hyperbaric oxygen treatments together for part of my many months of them. In response to the closing question, she said, “I do have another chance because I’m leaving for India Tuesday.” I already knew she was going, but this was the first time she announced it to her monthly support group.

In that second, I became more aware of the power of intention than ever before. When I left for Delhi in December, I knew I was doing it because in part, “someone from the U.S. had to go first” (with this disease). Sitting there, I realized that someone was unequivocally and absolutely destined to be me. There is no more perfect way I could have ever painted this picture.

I’ve gotten several e-mails since then from people in the group, and people beyond that. Everyone has told me how brave I was to go; that I am a pioneer for Lyme Disease. I wiggle in my skin at those comments, unsure of how to reply. I don’t feel brave beyond reason. I did what I had to do. I followed my heart. My life is consequently overflowing with hope, which is now trickling toward others.

This feeling of slight discomfort is beyond worth the inspiration this unexpected stem cell celebrity-ness has brought. If letting people hear my story has helped them believe that everyone’s little miracle is right around the corner when they need it most, it is the best job I’ve ever had. Not only will I let them call me a celebrity in all of my unsureness -- but I’ll wear a tiara to play the part.

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About Amy B. Scher

A passionate author, pioneering patient, and sassy spirit with just enough sweetness to get me by, I live by my self-created motto: when life kicks your ass, kick back.Amy B. Scher's profile Amy B. Scher's blog