Where it began
Ten years ago, with a bulging belly and swollen ankles, I could have never imagined being where I am today. I was healthy and strong, donating my eggs for an infertile couple in Los Angeles whose last hope for a baby was a donor (me). I was the opportunity of new life for a family who wouldn't have had it otherwise. I went through hormone therapy, mood swings (oh, the mood swings), ultrasounds and uncontrollable cravings for bagels and lox - all in the name of love. Someone else's little bundle of love. And now, when I need it most, the gift seems to be coming back to me halfway around the world. I keep joking that I must have karmic eggs.
Enter destiny: defined as a predetermined course of events considered as something beyond human power or control.
Where it's going
On December 9th, I board a plane for New Delhi, India to receive embryonic stem cell treatments. This revolutionary therapy gives hope to halting the progression of my chronic Lyme Disease, and subsequent problems that have developed because of its missed diagnosis. Thanks to an amazing soul, and new friend I met while at the Maui Writer's Conference in August, this possibility now lies before me. I met sweet Amanda at the conference, just after she had returned from India. She was there for 2 months receiving stem cell therapy with Dr. Geeta Shroff for a spinal cord injury after a freak ski accident left her paralyzed 15 years ago. Since that dreadful day, she had been unable to feel anything below her bellybutton. However, in India, that all changed. She has made incredible progress and will soon be on her way to walking again! At the clinic with her were other patients with various conditions like Diabetes, Parkinson's, ALS, and all with amazing stories that moved me to the core.
Treatment is 2 months of stem cell therapy and intensive physical therapy. Over the past two years, my loving family has spent several times that amount for what ended up being one disappointing and rigorous treatment after another. Although I do feel a few have helped some, nothing has allowed me to live the full life I hope for.
Why stem cell therapy?
Embryonic stem cell therapy (adult vs. embryonic will be discussed in another post) is something that I feel will actually give my body the opportunity to heal instead of just offering a temporary fix. The new, vibrant cells will help restore my immune system so it can fight on its own, as well as help to regenerate my nerves, tissue and other cells that have been damaged. It will be a gradual process but I know that my antibiotics and current treatment combined with the new life of these stem cells will bring my body to a new place.
About the doctor
Dr. Geeta Shroff is an In vitro fertility specialist who has discovered a technology allowing her to create an infinite number of stem cells all from a single donated embryo. This takes away much of the ethical debate over embryonic stem cell therapy, especially in the U.S. She has treated over 300 patients in the past 5 years, from all over the world with conditions deemed incurable or terminal. None have reported any adverse side effects. She has filed for a patent covering over 100 countries in hopes of jumping over political hurdles and making this treatment widely available.
The details of how embryonic stem cells work are scientifically intricate and at the same time, a miracle. I have been playing tug of war with myself ever since I spoke with the doctor and found out she would accept me as a patient. How can I know this is the right thing? What if for some reason, it didn't help? What if something went wrong? Well, I have found peace with one single answer to all my spinning worries. The only thing I know for sure is that if I don't do this, I will regret it. If it doesn't turn out how I hope, I will be ok. But, if I pass up opportunity in the face of fear, I will have betrayed the person I am so proud to be - the free spirit, a passionate soul, the granddaughter of a survivor who refused to die in the darkest of the world's circumstances, and someone who was lucky to be raised with enough confidence to follow my heart halfway around the world beyond most people's wildest imaginations.
The journey continues...
Despite heavy duty antibiotic therapy to try to eradicate the Lyme bacteria and other co-infections the tick gave me, I am still in pain 24 hours a day with relief only when I am sound asleep. Because it was misdiagnosed and untreated for so long, I have damage to my nerves in all my limbs, arthritic symptoms in my major joints, some cognitive difficulties, a weakened immune system creating problems with recurring shingles, low blood counts, and the list goes on. After all the research, long talks with the doctor, seeing Amanda's progress with my own eyes, and following other patient's stories, I know these stem cells are what I need.
The last few years have been something completely surreal. The lessons, growth and blessing I have received have been life changing in ways I would never want to give back. But, I am tired and ready to stop suffering. I look around and wonder what it would be like to feel healthy again. I never realized health was a distinct feeling until I experienced what it is to not have that. I want to wake up in the morning and get out of bed without aching in the deepest parts of my bones. I want to be able to have enough energy to do more than one errand at a time. I want to be strong enough to pick up my nephew and carry him around like aunties are supposed to be able to do. I want to roll over in the middle of the night without severe pain in my joints. I want to travel without worrying about taking an entire suitcase for medicine, and having to arrange wheelchair service. I want to get past this so I can live my dreams. If trying something unconventional gives me a better shot at all of that, then I am doing the right thing.
When I get back from India, I am dedicated to helping people like myself who want to explore treatments not available here, and now. Everyone keeps saying "some day we'll be able to cure…." For some of us, "some day" just isn't soon enough. I recently read of a doctor whose grandfather taught him the Jewish concept of tikkun olam. It means to better the world. It was his personal inspiration and in a way, it has become part of mine.
When I arrive on Indian soil, probably overwhelmed with emotion and uncertainty, I will remember that I'm not only there for myself, but for all the people who needed someone else to be brave before them.
So, I'm going to keep my decision close to my heart with my deep-seated belief it will bring days of fuller life and less pain. I am ready for all the people who won't understand. As of this day, I can honestly say that I feel I am in the exact place I am meant to be. And after 28 years of having no regrets, I have ultimate faith that I will come back from New Delhi in February "more" of this person, who feels blessed to have traveled a path that some may call imperfect. Any experience from today forward is nothing less than a miracle already.
When I gave that gift ten years ago, it was really the best thing I ever received. And now that I'm in that same place, I can actually feel what it must have meant to them. The circle of life is a funny thing.