Post Embryonic Stem Cells Update: Two Weeks and Counting

It’s kind of sad, the things you forget that you forgot. I am just now realizing how long I was sick before I got to the point where I even recognized something was seriously wrong. In July of 2005, my limbs pretty much stopped functioning in what seemed like a single moment that I’ll never forget. But prior to that, there were migraine headaches, chronic nausea and a host of other ailments that didn’t seem to be strung together tightly enough to possibly be one illness.

Today, I washed the kitchen floor on my hands and knees -- because I could. I cooked three different meals in a couple of hours -- because I could. I took an extra long time to do my hair even though it didn’t come out any better -- because I could. Everything is new. Maybe I used to do these things once upon a time, long ago, but I don’t remember. My “before Lyme” life is a blur. Perhaps it’s better I haven’t remembered it clearly all these years. Now, I am utterly amazed at least a dozen times a day. In between, I forget that anything is new, different or as incredible as it really is. I guess I’m too busy living.

As I plan for my doctor’s appointment next week, there is an obvious void to my routine. Usually a week before I see him, I start to compile a list, which is broken up into two parts: What got better and what got worse. I always try to even out the better and worse list but it’s not a fair game. My what got worse list always wins the length war. So far, I have nothing to put on it. I have zero things as of today serious enough to complain about. When I am brave enough to post my what got better list on this blog, I'll know I have let go of all of my fear that one day, I'll wake up and this will all be gone. Soon. Not yet though.

A wave of interest in embryonic stem cell therapy has greeted me home. I’m sharing my story and encouraging those who want to explore this option; but being brutally honest in the fact that it’s simply not for everyone. It’s not for those in a hurry, desperate for a “fix,” the weak at heart, or those who can’t put their princess tiaras or prince crowns aside to live simply. It’s not for those who will melt of culture shock, people not willing to grow emotionally as well as physically, or those with an adversity to chicken (you will never eat so much in your life). It is not for those, as much as I hate to say it, “too sick” to endure the traveling and inconveniences of living in another country. I feel a need to screen people for Dr. Geeta Shroff and Dr. Ashish. Having been through this experience, I can almost pick the “good candidates.” I know the person who will survive, and thrive. And, unfortunately, it’s not everyone. I’ve seen it.

I have a personal disclaimer now that reminds people there are no guarantees and even though I started to get better so fast, it usually takes much more time and patience. I want to wear a sign on my forehead like a weight loss commercial: Outcomes may vary. Results not typical. I am willing to be an example -- and even a shining one. I also want to be a reminder. Each person is on his or her own journey. I owned mine. I worked hard. I didn’t rush things. I was totally ready for whatever came. And in all honesty, I even had a buried fear it would be this -- the reality and responsibility of a “normal” life suddenly flooding my otherwise slow pace. Yep, I said it. I was scared to get better. Everyone who is sick knows what I am talking about, whether or not they’d ever admit it. I’ve realized this is all part of my journey -- talking about (or typing about) the good, bad and the ugly. I remember telling people who questioned my decision to do this, that someone had to go first (I was the first from the U.S. with Lyme Disease). I now know part of the reason beyond my own recovery. It seems that it takes the edge off the fear for those going second and third. It’s the passing of the torch, the borrowed bravery, the gentle hand on a frightened shoulder.

For those that I know heading to India now and possibly in the future, remember to embrace everything as it may come. Stay strong, but fall apart when you have to. And relax. The journey is all yours. Travel well and do it your way.

As for me, my alternate schedule of sleeping and eating is keeping me busy. I sleep better than I have in as long as I can recall (with no sleeping pills for the first time). I sleep long hours and take naps, but wake up rested. I eat too much and probably too much of some of the wrong things.

I'm excited and nervous for next Friday's appointment with my Lyme doctor. I haven’t fathomed a visit where I couldn’t come up with a list full of negatives. Even if I had only five, it would be a blessing. I think I’m going to bring a blank paper. The clichés of life haunt me with their trueness lately.

“Sometimes less is more.” Today, that’s my favorite. I am more proud of my list that is dripping with emptiness than I have been of anything else for a long time. Forget being off my painkillers for over a month now. My list of nothing seems undoubtedly frame-worthy after these years of having to write front and back and in between the lines on my what got worse column.

All the way from this blank list of ouchies to the two lonely suitcases I lived out of for two months, I am living proof that less really is more sometimes.

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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