Friday, July 11, 2008

"we can help"

It's been an eventful morning here at the hospital and my brain sort of feels like it's swimming with thoughts and emotions.

Dr. Shroff and Dr. Ashish (the anesthesiologist who does the more complicated spinal cord procedures) came down to Ryan's physio this morning and Dr. Shroff was talking with Ryan about her frustration with not being able to decipher which of her leg movements are real/new/notable and which aren't. Dr. Shroff is so straightforward and direct, and she said something like, " you really want it, but you're afraid, so you're not letting yourself believe it. You have to get over that fear and stop being so cynical. Things are happening. "

It's probably true on so many levels. Ryan is so good at anticipating disappointment that she is able to redirect her emotions to not expect anything. This is great in that she's excellent at protecting herself from disappointment and hurt, but it would probably be really good for her to be vulnerable and open, particularly for this experience. I suppose after a certain amount of time, vulnerability is pretty freaking scary, and being skeptical and protecting yourself is probably the safest way to live - I say that from personal experience! (but I promise, I'm working on being open-hearted and opening up to my vulnerability and the idea that I can't control everything in my world. I'll try to teach Ry how to do that as well!)

So that was interesting. Dr. Shroff even taped some of Ryan's leg movements coming from her crazy hips, and showed her on the video camera that SOMETHING is happening that wasn't before. I think she knows this - her feet look better, her skin looks much healthier, her hips are moving all over the place - but it's just so difficult to really lean into it.

After physio, we went to a meeting with the doctors and all of the patients. There are two patients here that are back for their second visit - a spinal cord injury and a Lyme disease patient - and another incomplete spinal cord injury that has been here for three months and is about to go home, and the rest of us have all arrived within the last couple of weeks. So this meeting was mostly for us, to be able to talk to the doctors and ask questions about the treatment and the process in general.

Lots of crazy ideas and bits of information are now floating through my head, bumping into the many varied emotions I feel about these things. Some of the tidbits are as follows:

  • one patient said that stem cells, in five years, will be used as widely as penicillin
  • there's a potential in the future for stem cells to treat pretty much any ailment - physical (muscular), neurological, developmental, psychiatric, etc... Dr. Shroff and Dr. Ashish have sucessfully treated patients with everything from Alzheimer's to Asperger's - from spinal cord injuries to cerebral palsy. Of the patients here right now, there are a few spinal cord injuries, two people suffering from Lyme disease, one with a rare muscular disorder that has led him to lose most of his muscle mass in his limbs, a man with Alzheimer's (from Bahrain!), someone with diabetic retinopathy (I didn't know what that was, but thank god for wikipedia: http://en.wikipedia.org/wiki/Diabetic_retinopathy) and a man with ALS.
  • stem cells have cosmetic benefits - one of the spinal cord patients has had his gray hair turn dark again, and perhaps in the future it will be used for cosmetic procedures as well - like the next botox?
  • human embryonic stem cells are legal in India only for ailments that are incurable and terminal. That means I can't get stem cells to go to my brain to cure my neuroses, unfortunately :(
  • stem cells have homing devices to go directly to the places that are needed - and nobody knows how
  • it was really apparent to me how early the research of all of this is - Ryan really is involved in the infancy of such a huge and amazing thing. I of course knew that before we came, but hearing the doctors talk about the possible future of human embryonic stem cells is just remarkable.
  • Dr. Shroff is the only doctor in India working with human embryonic stem cells. There are other doctors working with other types of stem cells, but she's the only one working with human embryonic ones.
  • this is huge!
So, there are a just a small assortment of what's going through my head right now, along with the subsequent emotions and feelings of being totally overwhelmed with information and ideas.

But don't worry, not all of the emotions I'm feeling are necessarily scary and undesirable. Some of the emotions are also inspiration and pride and awe and appreciation. So it's all good.

more later... just my immediate thoughts as we wait for lunch.

2 comments:

Anonymous said...

What a phenomenal, creative, and caring friend you are to Ryan. Thank you for being her little Angel through this treatment. Paradoxical Delhi is not easy...and patients need all the friendship, love, and support in the world. Ryan has you. You're the BEST!!!!

xo Amanda Boxtel

sass_on_wheels said...

thanks amanda :)