Just WHAT gives me the standing to talk about stem cells, anyway?? I have a master’s degree in social work, but I’m not in the hard sciences. Here’s why.
When I was eighteen years old, I survived a terrible car accident that should have killed me. My recovery seemed near-miraculous. But I had a secret that I swiftly learned nobody wanted to hear, not my agnostic grandmother, not my religious friends, and especially not my church. When I lay dying in the hospital bed as a teenager, dying from acute interstitial pneumonia, I’d had an NDE and returned to life.
After that day, my health was connected to my state of mind in ways that seemed hard to believe but was fully documented by doctors and nurses. The car accident should have left me permanently in a wheelchair, incapacitated by constant pain from shattered arms, legs, and hips. Instead, I was healthy and active. I had a severe brain injury, and doctors had not expected me to ever be able to return to school or accomplish anything. Instead, I had a masters’ degree in social work. My kidneys had been damaged, and I should have been on dialysis. My retina had been bruised, and I should have been left partially blind. Instead, I passed the DMV test and drove my own car.
But all of this came with a cost. I believed that everything was my responsibility, that I should be able to fix anything that was wrong. So if anything went wrong, with my health or anything else in the world… that was my responsibility, too.
I also did research to try to find cures for the permanent problems that I was left with. I found out about research being done on embryonic stem cells with mice. I tried researching more, but there was so little information available, and I wasn’t a scientist, so I couldn’t make sense of did exist. I had a vague idea that stem cells could cure the incurable, but there seemed no way to learn anything specific.
I decided that I had to move on with life. No matter what had really happened, no matter what the NDE meant, no matter what kind of cures might eventually be on the horizon, they certainly weren’t here now.
Several years later, my grandmother died of an incurable lung disease. There was nothing I could do to help her, and no cure. Deep down, I felt that her death was my fault. If I really had this inexplicable body-mind connection that had sprung up and continued—no matter how much I tried to convince myself that it didn’t exist– then I should have somehow had the magical ability to cure her. Or she should have been able to do it herself. If she’d only had a positive attitude, if she’d only made an effort, then she could have pulled through. But above all, there should have been a cure.
Several years later, a client at a social services where I was working left the minimum security group home and murdered a child in the neighborhood. An elderly resident, Ella, had tried to warn staff that she’d seen the client sneak out. She was dying of liver disease, and she reminded me of my beloved grandmother who had raised me and had died many years before her time. Even though I hadn’t been one of the staff warned by Ella, I felt somehow responsible, as if I could have changed the outcome.
The next day, I was suddenly hit with an unknown eye disease that no doctor had ever seen before. Even though the common form of this disease—age-related macular degeneration—affects one hundred and eighty million people in the world today, this subtype had never been documented. It wasn’t age-related, and it wasn’t one of the known genetic forms of the disease. The cause was a complete mystery. But there were two things everyone could be sure of: the disease would end in blindness, and there was no cure. Or at least, that’s what everyone said.
I refused to believe them. I refused to accept that there was no hope. I’ve never been one to give up easily.
I was a fighter, but I couldn’t define the enemy. That was why I’d survived the car accident in the first place, but I didn’t know what to do or where to turn now. My beloved grandmother had died recently of an incurable disease, and I was wearing my sister out by pouring out all of the pain and misery on her. I couldn’t get past the fact that had lost faith many years before in the split with my church. I couldn’t make myself even think about the body-mind connection I knew I’d had ever since the NDE. After all, the eye disease had started right after the murder which I’d felt unreasonably responsible for. Maybe it was all my fault. Maybe I’d caused it.
So I decided to rely on science. Whatever was actually causing the disease, whatever had triggered it, whatever it might mean, what counted was that it was here now, and I had to fight it. I turned all of my time and energy to researching evidence for any possible cure—and I found one.
A treatment for age-related macular degeneration was finishing the FDA’s safety testing phase. The drug halted the progression of the disease for virtually every patient in the trial and caused major improvement in over half. Patients who had been blind were now reading and driving. The top retinal specialist at the most prestigious clinic in the Pacific Northwest told me that the treatment could also cure my disease. But it had been held up in testing since 2003.
I tried to unravel the mystery of why the drug wasn’t already available. The preliminary results in Phase I studies were stunning, far beyond anything that could have been expected for such an early trial, better than most drugs currently on the market today—and this disease had, and has, no cure or treatment. Yet the drug still seemed many years from any hope of FDA approval.
The mystery became sadly clear when I learned that the drug was part of a revolutionary new class of medicines in development that are based on embryonic stem cells. These drugs do not treat symptoms; they hold the hope of renewing and replenishing the body’s natural mechanisms for creating new cells for every organ and tissue. They could cure incurable diseases, prolong life, and radically turn back the clock. Old age as we know it could become a thing of the past. Degenerative diseases might cease to be a reality. Diseases like AMD, cancer, COPD, MS, ALS, and so many more could vanish from human history. Everything about medicine and health as we know it could change.
The sad part is that funding for medical research these types of cells has been blocked for over forty years, held hostage by misguided beliefs that they are against a rigid view of morality, a strict and wrong interpretation of what God wants for us. Because of this relentless opposition, research was far beyond where it should be, and drugs that would otherwise already be available were languishing in development at best, nonexistent at worst.
I knew that these ideas were, are, wrong, that people against stem cell research for religious reasons were so wrong. They were the same kinds of people I had dealt with before, when friends and leaders in my church hadn’t wanted to hear about it and had immediately closed their minds out of fear. I never told anyone else. They were the reason why I had left the faith. They had limited minds; they couldn’t look beyond their own narrow interpretation of God. And people with the same kinds of ideas had blocked funding for stem cell research for a long time. So nothing could be done for me, or for anyone else with an incurable disease.
I turned to the belief that it was all my fault and that I should be able to control the disease and make it go away through nothing more than the power of positive thinking. After all, I must have brought the disease on myself through negative thinking… right? But this belief system only made everything worse. I sank deeper and deeper into a morass of fear and depression. The last straw was the day that I literally thought I did not want to see anything that was happening. Within seconds, my vision almost disappeared. This was documented by doctors the next day. There was no way to pretend that this connection hadn’t happened and didn’t exist.
There seemed nothing I could do to make things better. All of my desperate attempts only seemed to be making things worse.
At the last second, when I had given up all hope, when I had hit bottom, I gave up. I let go. And I prayed for the first time since I was a teenager and had fled the church.
This was prayer unlike anything I had done before, when I was just repeating words that someone else had written. It was direct personal experience with the divine. A tremendous peace descended on me. I knew that it didn’t mean I was cured. It didn’t mean that anything magical had happened. I knew that I had to let go of all the desperate struggling, because there was nothing else to do. I chose to walk the unknown path laid out for me by faith, that there was nothing else to rely on but faith, even though I didn’t really know what that meant. It was an experience that could not be explained or contained in words just as my near death experience had been when I was a teenager.
I didn’t expect anything to happen, or not to happen. I walked by faith, not by sight.
I went to the retinal clinic the next day, and my doctor told me that something had happened he had never seen before. My mysterious disease hadn’t disappeared, but what had happened was even stranger. It had suddenly done a 180 and changed completely, turning into a completely different type of disease, the only type of MD that had any chance of responding to the one drug treatment available. Even then, nobody thought that the drug would work. As a last ditch effort, it was given to me anyway.
A few days later, I could see again. My disease went into remission.
None of it made any sense. There were no known cases of my mysterious disease changing literally overnight into the only type that could be treated. Even after the inexplicable disease became one that doctors could understand and treat, it was still extremely unlikely that I would have a positive response to the drug, much less a remission that has lasted four years. But that is what happened.
It seemed a miracle without explanation.
At first, I didn’t want to explain it. I didn’t even want to think about it. Most of my friends were atheists, and I knew that they wouldn’t want to hear a word from me about any kind of faith healing. For the same reasons that I’d never told any of them about my near death experience, I didn’t tell them now. Even to myself, I didn’t want to admit what had happened. The treatment that had worked had an amazing result, but it was a treatment rather than a cure. I was in remission; I hadn’t been cured. I was terrified of jinxing the recovery. I decided not to deal with any of it.
I took life day by day and didn’t return to regular work, but I volunteered with a hospice organization. I was an administrative volunteer, organizing mailing campaigns and client databases, avoiding any contact with dying patients. But there came a time when I couldn’t avoid it anymore. On a visit to evaluate potential volunteers, I sat with a dying patient who looked like my grandmother. The next day, during a checkup with my retinal specialist at Casey Eye Institute, I sat next to a patient going blind who sounded just like my grandmother
I couldn’t hide from the truth anymore. I finally allowed myself to remember her death. She had died of acute interstitial pneumonia, the same disease that had struck me when I was lying in the hospital after the car accident, except that she was not getting better. Proud and stubborn, she had kept the news from me until it was almost too late, until an aunt let the news slip. I had rushed to Minnesota, furious because I had been told nothing. I loved her, but we couldn’t connect at the end of her life. I couldn’t tell her about my NDE, couldn’t explore her own fear of death and maybe reassure her. In a strange way, I had blamed her. I finally understood that I had blamed her for the same reason I’d blamed myself. I felt that we both should have been able to cure ourselves because we should have been able to control everything. But human beings can’t control everything, no matter how hard we try.
Now, years later, I began to do research for her on any new cures, just as I had for myself. I learned that there was now a stem cell based treatment that could have cured her, but it, too, was languishing in development. Exactly as mine was.
I knew that I couldn’t hide anymore, couldn’t live in fear that “thinking the wrong thing” or “being negative” was somehow going to trigger the worst. Because that kind of thinking was what had held me back in the first place. The more desperately I tried, the worse the struggles became, the worse my health got. The key wasn’t to struggle but to let go.
The only way out was through. What had helped me more than anything else was to learn as much as I could about what was going on. I realized the truth: both science and faith had saved me. Advances in science could cure me, and everyone else who had incurable diseases. Improved science was all that could have cured my grandmother. The powers that people have over their own health might be amazing, but we can’t do everything, and we don’t know everything.
I began to fight for the rights of all patients to control their own health, through public education, citizen action, and programs like the Right to Try laws. And that’s what I encourage everyone else to do, too.
That’s really what this site is about, and it’s a lot of what my book is about.
Contact me with any comments or questions by using the form below! I would love to hear from you. 🙂
I survived the disease, and I now have the only remission on record. But a remission is not a cure. The stem cell drug I need for a real cure is now rapidly moving towards approval in the rest of the world, but in the USA, it—and all other cellular therapies-- are still stuck behind prejudice, ignorance, and lack of funding. Hundreds of millions of desperate patients with incurable diseases need these drugs.
That’s why I’ve gone on to fight for greater public education on stem cell drugs, knowing that our laws must be changed so that all of us can get access to the best treatments instead of our health and our lives being held hostage by special interests.
I’m now a patient advocate whose work on stem cells and patients’ rights has been published in outlets such as the Oregonian. I am a manager at popular science and financial blog www.stemcellinvestor.com and a frequent speaker at many venues across the spectrum, including churches, scientific conferences, and atheist groups, and everything in between. I’m also an advocate for Right to Try laws that would allow access to experimental medication for terminal patients at the state level. Read the entire story in my upcoming book, And the Blind Shall See: A Skeptic Patient Surprised by Faith, Science, Family, and Miracle Cures.
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