The Importance of The Toe Wiggle

The importance of toe wiggle doesn't lie in the actual act of the toe wiggle. You reading this may disagree and even, perhaps, think I may need a good stem cell shot to the head... but allow me to explain:

I can hardly begin to describe to you the pressure that one is put under to wiggle one's toes. It is like having final exams on the same day as your arranged marriage. There is also some sort of unspoken necessity of this act as well. As if your head may fall off if you cannot perform the action when commanded to. If you are not good enough to do this trick on command, it simply must be because you aren't THINKING about it properly.

As you can probably already tell, I have not been thinking, acting, nor performing properly.

All of this can lead to a lot of frustration if you let it...which I have had until recently. I think that this frustration was written all over my face in Day-Glo paint, a neon sign, a bullhorn, and some fireworks.

Dr. Ashish, not only has a good handle on my emotions because I see him quite frequently (while he stabs me with inappropriately large needles), but he is also an avid reader of my blog-- always chuckling about our crazy adventures. Sensing my frustration, I had an extremely eye-opening conversation with him about my progress. During the conversation I was explained the aggressive nature of the toe wiggling concept.

Once there is a connection established that extends all the way down from your higher brain to your toes, no matter the size of the connection, the stem cells can recreate the strength of that neural pathways. So even if there is only one neuron firing down to the toes, with the aid of stem cells, an entirely new functional spinal cord can be established. It all makes sense now. Of course that would be the best enthusiastic sign of remarkable progress. Once the toe wiggling is present, there is great confidence that the injected stem cells will then find their way to that connection and continue to rebuild and reconnect other networks that are flawed or sparse or completely absent.

Understanding the method behind the madness a little more, I now practicing the attempt of toe wiggling with hope and care... and little regard for frustration and defeat.

Sometimes It's Okay To Glide Through Life

Oh, calipers... how I love thee and loathe thee at the same time.

Today I spent both Physio sessions focusing on using my calipers to walk. For me, walking consists of shifting my weight to one side and flexing my stomach and hip in a way to pull up the hip toward the stomach. With this movement my leg is free from it's gravity trap and can now swing fairly well from it's ball-and-socket joint--especially being as externally rotated as I am. If I do this with little control my leg will swing around to the side and then rotate in, sort of the way that a child would draw large half-circles in the sand with his feet when fearful of getting his hands dirty. In order to properly move across the runway and make Vandana and everyone else happy I have to concentrate and glide my foot on the floor in one solid forward motion. If I mess this up at all and bring my leg too high or try to make to large a step, that stupid leg will take the chance at freedom and circle through the sand.

After sort of successfully gliding my way down the parallel runway I was told to now do it in reverse. The girls were excited to see me moonwalk. I was worried that I didn't remember the steps nor the song. It's sort of like a dance that you learned when you were a kid, maybe the kind that came with paper footprints numbered for your efficiency. After only a few jagged baby back-steps I was able to regain a sense for what I was to accomplish and the movements became a lot easier. In fact, when it was all said and done the moving backwards part is much more preferred to that crazy forwards motion that is so overrated.

This part of Physio is extremely tiring. I sort of used to wonder how Dr. Wheelchair got so sweaty when he practiced walking, but now I totally get it and want to give him a big high-5. (Dr. Wheelchair is a pretty cool story: He is a doc at the hospital and was involved in an auto accident about four years ago and currently overcoming his paraplegia with some shiny new stem cells of his own).

Having had walked both forwards and backwards in the morning, I was really surprised to see that I was expected to do it again in the afternoon. I am not one to say I am tired too often, but I think I uttered it a few times in the afternoon amid a shaky voice. At one point Vandana asked me if I had any control over the movements that I was making. For some strange internal cerebral abyss of a reason, that hit a nerve--figuratively speaking. I was so taken aback by the fact that I had just sweat out 20 steps forwards and backwards and she actually had to ask if I had any control! It's funny. At the time I was in mid-glide so I told her that I couldn't talk about it now, fearing that I couldn't dare lose any energy to unimportant things like talking and breathing. After I finished my wobbly steps I attempted to reassess what Vandana was asking... to be honest, I am not sure that either of us really got the response we wanted. But nonetheless, there was a truce involved, I think.

I've got it now... so tomorrow will be a new day for gliding, and I have decided to envision the perfection of Olympic figure skating (too bad it is the wrong season for this) all the while. Watch out control, here I come.

Thank Goodness For A Competitive Spirit

Every once in awhile I am reminded that I am a Leo: strong, stubborn, and widely competitive. Sarah says that I am a secret Leo minus the whole competitive thing. This is totally true.

The art of competition is something that I have always been good at. I developed a knack for it early on trying on several hundred swim races for size at my neighborhood pool. Over the years I have had many competitors in the water, but forever the biggest, baddest competitor that I have come across is myself.

I am just beginning to realize that it has been myself all along. Not those snotty, elitist high school opponents nor those friends that you don't truly think as friends but keep around for some unknown reason. Competition and my drive for it absolutely begin and end with me.

Here in India I cannot seem to turn around without my reflection staring back at me ready to challenge my inner and outer capacities. What are you lookin' at? At Physio I clench the parallel bars devotedly with my palms, tense up my already tense shoulders, try to feeeeeeel all the way down to my toes... but what I really focus on is the me staring back in the full-length mirror. Try harder! Push those hips out! What, you aren't strong enough to do that on your own?! I could do much better. And I prove the opposing me wrong with great pride on the majority of days. This competitiveness serves me quite well.

I have also enlisted a new best friend in my bouquet. Michael is a patient here as well with a similar injury in terms of function. I realized today that he is a wonderful catalyst for my competitive enzyme (and the first wheeler that I've ever been swimming with). I am constantly aware of his daily progress and compare it with mine. Are you going to let him show you up? In fact, today there was a pretty serious bet that took place over the finest of shower chairs in all of Delhi, in which I am currently the proud owner of (thanks to Amanda, of course). The bet was a race in which took place at our local pool: who could swim the length of the pool in IM fashion the fastest, Micheal or myself. Naturally I was a bit worried. Michael's got a bit more function, as well as a bit more testosterone to propel him through the water. Sure enough, he did it... twice. He beat the stinkin' caliper pants off of me! Are you going to let that happen?

Sure I am. It wasn't the fact that Michael won, in fact, it wasn't the fact that anyone won. (Or the fact that I will just be showering in his room from now on). Bringing that aspect of competition back to my underwater life is crucial. Crucial for me to improve and progress. I am going to continue to work hard and build upon the strength that I already have. I am prepared to fall, because I will be there to catch myself and make me try again. I will be a warrior and there will be a warrior staring back at me.

I Have Such Amazing Friends

Did Someone Say Road Trip?

If you know me at all, you know that I LOVE a good road trip... and that is exactly what I will remember about my journey to the Taj. Although tired, I had a really hard time napping (unlike my other friend who may or may not have chosen to sleep with her mouth wide open), so I settled myself into peering out the window for the 5 and a half hours it took to get there.

For awhile I spent a frustrating time with my trigger finger cocked and ready for action to catch the most amazing portrait of my view. My camera is neither hi-tech enough, nor am I skilled enough for such a shot. Snap after snap I began wondering why it even mattered so much in the first place. Then I discovered that my desire for the photo shoot was to be able to relay what I was privileged enough to view out of my baby blues to the rest of my world. IT IS FAR TOO IMPOSSIBLE. I wish I could, truly, be able to show you the melody of the lush grass swaying as herds of semi-starved cattle roam freely amongst families of impoverished farmers and their dancing children. I wish I could show you the gaggle of monkeys so delicately and freely crossing the road as any true ancestor would. I wish you could see how time stands still for a brief breath of a minute for me so that I can soak it all in. But, IT IS FAR TOO IMPOSSIBLE. This is probably for the best, I presume, because for then my experience would lose that sense of intimacy that only I would understand. You need to have your own picturesque journeys... for isn't that all life is anyways?

BUT, if you'd like a glimpse of the trip to Taj from my eyes, here you go:

The Tale of the Tumultous Taj

Once upon a time there was a faraway land called, Agra. There were various rumors claiming the necessity for those who journey to Delhi to also extend their voyage to Agra, for Agra held one of world's only remaining wonders (due to the influx of Google, of course)... The Taj. Now this was no small feat, this Taj. People had been traveling for years just to catch a glimpse, primarily at dusk and dawn because of the reflective qualities of the marble. Having been built for luxury, the Taj appears to this day as the wedding cake of the universe.

Those who decided to endeavor from their Delhi homes to Agra must be wary of the journey that lie ahead. Getting to Agra is no simple task. There are millions of charging metal rollers of all sizes to block your way by weaving in your path, yelling with horns to attempt to scare you away, or even crashing together to form even larger metal rollers that no longer roll but block the roadways completely. The few brave and agile ones that make it through will also be tempted by all sorts of mystical creatures who will try to distract their mission. Creatures that wrap on windows motioning to their mouths. They want to eat you. Creatures that shove shiny things and perfumed things at you. They want to blind you. Creatures that have humps and also creatures that have trunks. They want to poop on you.

Luckily, the heroines who dared travel to Agra enlist the aid of a shaman who took them there with little distraction or distaste. This was a true benefit because he was really powerful, you could tell because you could hear radical Hindi pop music coming from his rolling ball of metal. (By the way my new fav is a Punjabi artist known only as Rambo). This music will help glide you to the beautiful land with five and a half hours appearing to fly by as if it had only been five and a quarter.

During a time of great rule and deceit, the surrounding areas of Agra and the Taj were disguised. The people who lived there didn't want to share in the beauty, so therefore they covered the land in cow manure, human urine, and stagnant water. The townspeople were truly overjoyed when they were able to see how well their camouflage worked.

Our heroines from Delhi made it into town and found it hard to manage at all. After having their chariot nearly sink in a road of nothing but water, they barely made it safely to an inn where they could rest their eyes. But before they could manage any rest, they had to eat dinner at a dangerous place with illusory golden arches that almost touched heaven and hell, as well as climb up slippery mountains of marble to locate a place to sleep for the night.

By daybreak our heroines, tired and worn, set out to find the Taj... and find they did. It was just as they had heard. Beauty. Grace. Power. 750 Rupees. No photos beyond this point. "You want postcards, ma'am?"

Feeling completely satisfied in their journey, the heroines headed for home; for they knew that no matter what the labor and expectation was they would be foolish to be so close to the Taj and never witness it for themselves. (That's the only reason to go, in my opinion). And they lived happily ever after...

~The End~

Clown Car Equivalent:

Tonight was yet another first. We decided to venture out to dinner, no news there--even the sisters and ward boys don't expect us to be around in the evenings anymore--but we took another patient with us.

Dinner was great and we had quite a few laughs as our group is continually gaining members. BUT the excitement really started as we all headed home for the evening. Let's do the math:

5 People
2 Wheelchairs

The tricky part of this was that Sarah and Erin had to get their own rickshaws to eventually end with slumber in their respective quarters and the rest of us needed to report back to Green Park for BP readings and sugarplums dancing in our heads. So what else is there to do but stuff (yes, stuff) 3 people and 2 wheelchairs into the same rickshaw?!

It went rather smoothly (honestly, Dad, it did.) We managed to squeeze my wheels in a sort of cargo area behind us, although the cargo area refused to fit my wheels without a fight. The other wheeler's at our feet. Next went my wheelchair frame over laps... then the other frame extended partially over mine... and a cherry on top. Presto! We've done the unbelievable. There is nothing you can't accomplish in India!


Standing was good today. It is getting less sweaty, which is all that I can say about that. I am still working really hard at getting my hips to push through forward. Tonight Kanako gave me a specialized Physio session where I had many physical urges to tear up from the stretching and massaging--Thai style. Yikes! I will be standing tall in no time with that sort of manipulation.

We are going to attempt to wake up early tomorrow morning (in about 5 and a half hours) to go swimming so that we can get to Physio and then head for an overnight trip to Agra. We will be awe-struck at dawn--courtesy of the Taj Mahal, aren't you jealous?

P.S. The sky was blue for about 2 hours early this evening for the first time since I have been here. It sort of made my heart sink from missing the beautiful Colorado sky, but besides that I am taking it as a good gesture.

Knock, Knock...

Who's there? Kanako!!

Early this morning Sarah and Erin journeyed to the airport to capture Kanako and bring her to our humble abode here in Green Park.

We all took turns showing Kanako the ropes and relaying the chaos of our daily (typical Indian) schedule. Poor Kanako, poor jet-lagged, kind-hearted, up-for-anything Kanako.


Today was a really good challenge. Physio was really strenuous, physically and mentally. I was asked at all ends... Vandana at one end and Dr. Shroff at the other. Everyone really wanted to SEE some progress and a product of my recent procedure. Now I don't get to SEE any of it because I am the one trying to lie completely flat, gritting my teeth, thinking of each minute muscle contraction. Flickers in my feet is what I am hearing and small muscle movements in the hips. I FEEL all of those things, stronger everyday in fact...but when is it my turn to SEE them?

In terms of my calipers, they are no longer considered caliper pants. I have graduated, thrown away my training wheels... I am a big girl now. Pragati, the caliper guy and my arch nemesis, took off that extra belt/hip stabilizer this morning to see if I had enough upper body control to maintain the standing position. With much surprise, I found it to be easier than before! (But by no means easy.) I am now able to shuffle my feet with a less robotic dance, but my hips are still sooo tight. Sarah has started a frenzy in Physio, calling out to everyone within earshot about how my "hips don't lie." Got to love her.

So What Have I Been Up To?

Inpatient Diaries

Just after 3 days in the somewhat underrated Gautam Nagar Hospital, I am back "home," safe and sound in Green Park. Gautam Nagar is an interesting experience in and of itself. A glance at it from the outside, one might suspect that there isn't anything resembling a hospital at all--with an entrance located in a darkened, narrow alleyway, neighborhood kids and feral dogs running around at all hours, and enough motorbikes to cause a backup way beyond the confines of the semi-paved road. But GN is something special. Immediately upon my arrival, I was barely hanging out of the taxi, mid-transfer, before I was scooped up by some of the ward boys to carry me, Sarah, Erin, and all of our necessities (I think 6 bags of junk to keep our mouths, brains, and fingers occupied) without a word. Giving me a choice in rooms, I decided--probably too rashly--on the room that I could actually navigate to the toilet. If I had another go at it I might possibly opt for the room with a window... there's always a next time.

The staff at GN is remarkable. I was always greeted with a smile, whether it be from a ward boy, a sister, a physiotherapist, or a doctor. I must say that these people, both at GN and GP, really know something about patient care. They are genuinely interested in who you are as a person and will ask you to sit and chat for awhile about the USA or cinema or food or cell phones.

My procedure began about an hour after my arrival, giving us time to settle in and acquire some keen hospital fashion with a BIG green gown. The initial procedure was done in the Operating Theatre where they inserted a fairly long catheter into the base of my spine, surrounding my spinal cord. The catheter was then taped up to my neck. It was very strange to feel vertebral restriction from tape. At the end of the catheter was a port for the stem cells to go. My first injection was given to me there. From then on, once in the morning and once in the evening I received these sort of injections as I laid, strategically, in different positions for 2 hours at a time in my hospital bed. First my back twice, then my right side, then my left, next was prone, and finally sitting up.

Each time I had an injection I encountered a new and exciting feeling. With the help of gravity, positioning, and a few newspaper covered bricks Dr. Ashish was able to send those cells EXACTLY where he wanted them. With each trigger of the syringe and each breath in my lungs, Dr. Ashish attentively asked WHAT I felt. I would give him the most detailed response that I could muster, though always feeling as if my description was merely sub-par. Although, at one point he asked as always automatically, "Where do you feel it now?" My answer was a little hesitant, "In my throat?!" Then he proceeded to poke me in the throat in the exact spot that it was uncomfortable and wanted to know, rhetorically, as if he always knew about that spot.

Throughout these 3 days of idle repose I was able to not only relaaaaaaaaaaaax a bit and read a book or 2, but I was also able to have time to look inside a bit; beyond the muscle tissue and newly developed adipose (thank you ghee), beyond the fretted synapses, beyond the cerebral structure of what I know. Yesterday, while sitting alone in my room for the immense span of 2 welcomed hours I had a conversation with my legs.

There is where I realized that I had severely neglected, even ridiculed them at times. So atrophied and small, death-ridden in color, and scars that could and would scare a child. I had tucked them away under long pants and under the valleys and peaks of my consciousness. (For those who know me well know that I hadn't even shaved my legs in give or take 4 hairy years.) For some reason, looking down with my legs outstretched as I reposition for the millionth time, it sparked something inside of me. My legs may have said something like, "Hey lady, did you forget about us? If you really want us to do something for you it wouldn't hurt you to be a little nicer. You make us feel bad being so ashamed of what who we are and what we've been through together. How 'bout a truce?"

Right then and there, I jumped from my princess and the pea bed and headed to the toilet that I can navigate oh so well. I grabbed my disposable razor and began hacking away at that forest until I could finally see the knees between those trees.

What a difference this new synthesis of mind and body make. I now am the proud owner of baby smooth legs that are crying to show off their slowly transforming progress. They giggle ecstatically at the sight of the "baby" calf muscle and have sent away for a neon sign to display their very proudly regenerating skin grafts and scars.

So I guess it isn't so bad to be without internet for a few days...or perhaps it absolutely is. Regardless, I should probably lay off the Tom Robbins prior to writing a blog entry.

Take A Break

I am off for bed, and when I awake I will be taxied over to Gautam Nagar Hospital for my 3-day procedure. From what I know this won't be a very painful one, just long. I am looking forward to catching up on my reading a bit.

We won't have internet access at this hospital so my communication with the rest of the world outside the facility will be extremely limited. Sarah and Erin will do their best to keep updates and check emails and whatnot in the meantime.

Between you and me it will be sort of pleasant to be incommunicado for the next few days...

Lots of rest.

Some meditation.

Crossword puzzles.

Midday naps.

An Update Of All Those Things

At least 4 times a day you can hear me remark, "Ooh, remind me to blog about THAT!" Though so much is lost out of my head before I return to the computer. It's sad really to not be perfectly able to document this experience online the way that it is in my head. Actually when I think of it, that is probably for the best.

Anyways, to recap...

In terms of Physio, I have taken a total of 6 "steps" in a row, successfully accomplished today. Now when I say steps I mean wild, Elvis gyrations from the hips that cause my braced-up legs to follow suit. So I suppose we can still call them steps, right? Standing in my calipers is probably one of the hardest jobs I have to do right now. The calipers themselves hold my legs extended properly, so that isn't an issue. The issue is, however, the fact that my hips are tight and my trunk and back are weak. When I attempt to stand on my own, my bootie jets out and my upper body sort of caves. I have to make a HUGE effort to straighten my body appropriately. This, alone, causes my sweat glands to cry huge tears all over my face and neck. This is hard work, folks.

Swimming is becoming easier each day. My hips are flowing with my stroke much easier... in fact, I can swim a lot more butterfly. The new strength in my hips allows those stinkin' hips to actually help me out a bit on that dreaded stroke. Sarah watched overhead one day and commented that my hips were even coming out of the water, you know, that undulation.

Kanako arrives in only a few days and I am really thrilled to have her. We are going to be a full-house over in room 208 during the days, but I anticipate a lot of fun. I am really excited to show her all of the wonderful quirks and breathtaking charms of our adventures thus far. As Kanako joins us I will be saying goodbye to Sarah as a roommate, for she is renting an apartment down the road (about 20 minutes via auto-rickshaw, on a good day.) It will be sad to lose her as a roomie because I think that we have done quite well together in these cramped living quarters. We have always been very good at accentuating each others' positives and curbing any failed attempts. It will be a crazy transition, but I think of it more as my most favorite rendition of musical chairs.

I have my procedure beginning on Monday, as far as I know. I haven't heard many other details besides what I have already relayed. Probably the only thing that will be troublesome for me during this procedure is the fact that I will be sans shower for 5 WHOLE DAYS! Yuck.

We've all been delving into Hindi a bit... and this I try very hard. I am terrible with languages in general, but I really like the reaction to my endeavor. Impressingly enough, I can let people know that I am fine, I can tell the rickshaw to go right or left, and I can tell passersby that I am sorry after I run over their foot. There is also a very distinct cultural head-bob that I have acquired within the last few days. Oh, my poor students this fall...

Tonight almost all the patients and caregivers in the hospital went out for a super fancy dinner. Some had steak (real beef), others had fish, and most had brilliantly skillful dessert. Everyone was able to learn more about each other and have a bit of fun and appetite while doing it. I had a great time! It really helps this whole process to be surrounded by such good company. I knew that when I decided to come to India that it was important for me to bring that great support system that I have from home, but I never really even thought that I might make another one here!

I Did It

Probably not what you thought I did... probably not what I should have done... but I did it.

I peed like the Indians do.

Today we went on a HUGE shopping excursion, unintentionally. We started at Janpath Market and then ended up at Connaught Place after heading north in the heat. Somehow the day came and went. We left the hospital at around 2:30 and arrived back to the hospital at around 10pm, but we did eat dinner out (says Sarah). Anyways, at around 8 or so I recognized the fact that I hadn't peed since we left! After a desperate walk around Connaught Place in circles with no toilet in sight... or rather a lot of stairs in sight... we settled on a restaurant for dinner. Surely they would have a bathroom?! No.

After settling in to the restaurant, I fled in sort of a frantic, "potty dance" hurry. Closing the restaurant door behind me I have the absolute confidence that I will actually NEVER find a bathroom here. So I did it. Behind a block of concrete and a would-be fence.

(One too many bathroom blogs, I suppose?)

I'm Exhausted...

But I love it. My days are know filled with tons of activity. I have Physio, standing twice a day, yoga, swimming, sightseeing, and lions, tigers, and bears, oh my!

Tonight the patients all got together for a sort of pizza party in the reception hall. It was a great amount of fun getting to mingle with all of the other patients and hear more about their lives. I really like everyone here and hope that we can get together more often. In fact, it was just the other day that I was talking with Sarah and exclaimed how I really wished we had a dining hall here at the hospital so that everyone could eat together! Possibly a food fight.

I am continuing to work hard, but most of it is still unseen by even the keenest of eyes. I get rather tired just trying to move a toe or anything, to the point that I can't even imagine the movement anymore. My muscles are being stimulated by little pokes and pricks that are becoming more and more noticeable every day.

The docs have informed me that I am to have another procedure next Monday. This one is going to be both the cherry on top and the atomic bomb. It will be a three-day procedure with not a lot of communication from the outside world, let alone the cyber world. Wish me luck!

Hooray! For Caliper Day!

Today they got me up on my two feet, encased by a load of metal and plastic... but yet, on my own two feet.

The whole event only lasted a few minutes, but it is a start. I will now be doing Physio twice a day. Once at 9:30 for stretching and bending and again at 1:30 for standing and shimmying.

It is going to take my body quite some time to get used to being sooo upright. My hips, knees, and ankles aren't speaking with me right now, seeing as they had sort of a strenuous day. They'll get over it soon enough, I hope.

I think that I am probably one of Dr. Shroff's more challenging paraplegic cases, with the triple threat of having so much time lapsed since my accident, my tendon and muscle stiffness, and my robot hardware in both legs. It is going to be a long road to healing on many levels.

The other thing that I think that may delay my progress with these remarkable cells is the fact that they have no pre-designed destination once they are injected into my body. As Dr. Shroff and Dr. Ashish have explained to me, they know to go to an area in need. Well folks, my body has numerous areas in need. So far these little baby stem cells have made several pit stops to my skin, my scars, and I think even my hair and nails. The coloration in my legs and feet look noticeably better, the skin grafts on my shins have decreased in size and stiffness, I have absolutely no swelling in my legs or feet (even in the Delhi heat), and I have nice long fingernails--if anyone cares. I don't get it, but there are definitely changes occurring.

I guess for now I have to wait for these cells to find their way home to my spine to really FEEL that benefit that I flew across continents for. In the meantime, I will happily wait here with a sweet lime soda and some curried tofu...

Ahh!

Erin is sick. Real sick from what I know, although I haven't talked to her yet. She called this morning while I was in the shower with complaints of fever and chills. Could it be Malaria? She did stop taking her anti-malarial drugs after she realized they were altering her moods incredibly. Yikes!! Sarah talked to her about an hour ago and she said that she could barely stand. We talked with the physicians over here and they are willing to have her come here and take a look at her... thank goodness.

Currently, Sarah is in a taxi on her way to pick her up and bring her back to us. I sit here and wait, alone for the first time in 3 weeks.

(Once she receives her complete work-up by the docs here I will update that info as promptly as I, myself, receive it.)

Flexing My Mind

I will be having my second procedure today, in only a few hours. This procedure will entail injecting cells just below my site of injury (T5). For some reason, I am actually looking forward to it... go figure.

Trying to move muscles that haven't moved for over a decade is extremely hard work. While I am at Physio there are certain muscle movements that appear rather easy to visualize in my head and there are others that don't. I have a pretty strong grasp on "flexing" my quads and hamstrings in my head, along with my toes and feet; but for some reason I have a really hard time "flexing" my calves in my head. I think that it is really good that there is a strong sense of visualization for this, although sometimes it totally takes over and I feel like these muscles are really moving. They aren't yet, but at least it is a start.

It sort of feels like my lower body is encased in the most sturdy fortress of a suit of armor. I feel the flex with much ease, but it is never enough to penetrate that thick metal layer hiding it all away. Until my movements become powerful enough they will remain unseen. It's like a secret that my brain is holding out on, not willing anyone to see how much fun it is having deep down. Let's share this secret, Brain, shall we?

From what I am told, I should be getting calipers tomorrow. I am excited for whenever they decide to come. I am hoping that they are hot pink.

I Am Ready Now

Okay. I am ready to start.

Yesterday I was approached by both Dr. Shroff and Dr. Ashish, sort of like an "encouragement sandwich" of sorts. I suppose they were both compelled by some great wisdom that knew that I was struggling inside.

Dr. Shroff demanded my muscles to move. Can she actually do that? What if I let her down? Ugh. She knows that I am scared. She tells me that I must try to move, because I can move, but I am the one that is keeping the movement from happening--because I am having a hard time believing. Yikes! How can she see into my soul with such precision?

She proceeded the only logical way she knew how. Dr. Shroff video taped all different attempts at muscle contractions in my legs, then forced me to watch the entire tape. "See, that is a flicker!" She exclaimed. Still I am leery. Ahh!! She senses that too! Stop feeling badly about things, she can see right through you.

Dr. Ashish could sense the same but was a little more discrete in his tactics. He just politely explained the procedures and how everything will take time. Between these two interactions, half of me wanted to break down into tears and the other half wanted to smile from my heart. I was mad that they sensed my own doubt, but truly felt their belief in me.

So what do I do? I sit on it all day, take a swim, eat a bunch of food...sleeeeeep... and go to the mall. (Don't worry folks, I wasn't alone.) Between all of this distraction I think that I have had time to speak to myself a bit about WHY I am so apprehensive, negative even.

Sarah is partially correct. It is a vulnerability thing. Nobody wants to feel out of control and vulnerable to your expectations, let alone anyone else's. But it is, in fact, a few layers deeper than that. You could scrape down the epidermis layer, past that nasty adipose, straight into the real meat of it.

A lot of myself rests in what I have created for me in the last decade or so. It just so happens that a lot of who I am revolves around many factors of my paralysis: The people I know. The challenges I face. The decisions I make. The path I follow.

All of these things and a bouquet of others add up to one BIG thing. While I was growing from a "child" to an "adult," these factors grew with me. I don't know what it is like anymore to wiggle a toe, and I told my self many times that it didn't matter. But it does?!? If said toe does wiggle, then does it make me less ME?

After being showered in questions from the depths of my soul I decided that I had better start answering them. It is an interesting event to have a conversation with your higher-self, but someone had to do it. After a long and drawn out day of half thoughts and inquiries, I feel much more at peace with my crazy self.

I know that with all of my nervousness and psychoses about my newfound, limitless potential that this is exactly what I signed up for. I am doing this for me with the hope that something will happen. And it will. It is already beginning to transform me physically, in many ways that are only connected and detected by me...but it is happening and I am ready.

Too Tired.

Both mentally and physically. I need to rest on many things right now and will fill in the spaces tomorrow...

All In A Day's Work

We are all finally getting settled into a routine in our hospital lives.

I usually wake up several times starting at about 6am (with the Delhi sun that I have grown to both love and hate), but don't actually make an effort to do anything about it until about 8. I quietly open the computer, check a few emails, and "tip-toe" to the shower. After I shower, I make some peanut butter toast for breakfast and finish going through emails and websites until Sarah rises, at around 9 or so. Usually Erin arrives around this time. I can gauge the temperature reading by the amount of sweat that has excreted itself on the backside of Erin's kurta.

Physio starts at 9:30, and depending how responsive my little leggies are, it can last until about 10:30. From there we go straight into the Injection Room (appropriately labeled). There I am given my first dose of cells for the day, usually in my leg, and then we are off back to the room.

From here we all 3 spend some time on the computer in between chapters in our latest novels. Sar will also provide me with an additional physio session, free of charge! Lunch arrives around 1pm, and shortly after that I feel antsy to get out... this is probably the reason that Sarah bought me a makeshift basketball.

Kurtas in toe, we head out to make the most of our Delhi lives. Sometimes it's the local market, sometimes other markets... this is our "exploration time," if desired. We have yet to travel to any of the monuments or festivals we've been talking about, but they're on the list.

Usually wherever we are by 6pm we try to get back. I get another injection at that time with "Friends" laughing in the background and dinner knocking at our door a little after 7. Erin will stay until dark...but don't worry we make her call when she gets home.

Sar and I will usually play a round of cards, watch some trashy television, answer some computer calls, and then tuck each other into bed just to start the whole thing again in the morning. Life is good.

Seeking Solace

With so many things being upside-down and backwards right now it was necessary to find something to soak my soul...

I know that I have eluded to my of struggle with trying to find harmony between my physical capabilities along with my mental capabilities, but this is getting extremely confusing and quite a mountain for me to hike.

In fact, I know exactly what it feels like to stub a toe, to have an itchy knee, to bump your ankle on the side of the bed, etc. This is why it makes it so hard for me to discern what is real from what is a sort of mental memory for me. Athletes are said to recover better from injuries because they have what is called good muscle memory. Well, I have good mental muscle memory... and because of this, it is hard for me to decide if what I feel is real or simply a daydream of the past. In some respect, it might be a good thing that I can remember these feelings because isn't it really true that all we have in life is our own perception of things? Isn't feeling really all mental anyways. You say, "ouch!" when it FEELS bad. Does it feel that bad to everyone? No. Everyone has their direct connection of brain and body to tell them how they feel. But if your brain already knows, is it just a waste of time consulting the body? Who's to say.

With the complications of not being able to tell where feelings are supposed to come from, along with the fact that I just found out that I am Chairman of the Board of Cynics when it comes to me gaining any function back... I...Just...Don't...Know. I really want this to work, but I am so afraid of the disappointment that I think that I would rather shoot it down before it hurts. I am currently working through that.

Anyways, today was uplifting.

For the first time since I arrived in Delhi I was able to freestyle. I have been talking about it for days--swimming. We have been having trouble finding a good time to go because there are so many insane rules regarding the act of swim in Delhi that I thought I was going to explode. But today nothing was going to stop me: no procedure, no kurta, no physio, no soy milk, no nothing.

It was so wonderful to hold my breath at intervals, rotate and stretch, feel sun and water at the same time, take in the sounds of punching strokes and bubbles. It was amazing. (Now reading the other gals' blogs may tell you different, but believe me--absolutely worth it).

Sometimes I forget that I was nearly born in the water. My mind functions at full optimum only when submerged in a pool, lake, or ocean. For some reason, all time appears to slow down to a heart-beat rhythm and nothing more. Just me, alone with myself. Reconnecting.

So much better.

Erin's First (Sort of) Feature Film

If You Hold It Too Long You Might Turn Blue

I'm off to bed, feeling quite confident that it is the best way to spend an almost 10 hour headache. But before I do, here is a quick recap of the day:

Today was a fairly long day spent in the other hospital, receiving my procedure. It wasn't very bad, it was just the same ol' being tolerant in a hospital routine. The procedure itself only lasted a half hour or so, but afterwards I was to lie on my back completely flat for the next 6.

I knew this was coming (sort of) so we prepared ourselves with a bunch of books, movies, crossword puzzles (thanks to Carolyn!)... but I didn't want any of it. I used up my whole day lying in a bed looking at the ceiling, trying to avoid the onset of a seizure due to the strange flickering lights and humming fan as my Polaroid of the day.

p.s. Our internet doesn't work at the other clinic, so don't expect any live correspondence.


Sar and I returned to the Green Park Clinic around dinner time, grateful to be back "home."

Because this procedure was my first of my treatment, everyone is holding their breaths to see what may happen...

Surprise!!

Everything that happens here comes as a surprise. No matter how much you try to plan your day out, it never quite turns out the way you've imagined. I think I (secretly) really like that part of it all; no matter how frustrating and upside-down it may seem to make things, surprises are always welcomed. They are what remind you to live.

Today I awoke with a forwarded message from a reporter from a Canadian newspaper doing a story specifically on Dr. Shroff. She wanted an interview simply to dig deeper into the real people behind all of the talk. The reporter was a strikingly beautiful woman originally from Pakistan. She was very easy to talk to, and ended up giving us great advice on where to buy simple staples of our world: orange nail polish and the like.

Keeping with the current theme, I was also told that I was to have my first procedure this week. Trying to nail down the details (which I already knew was going to be difficult, getting a precise answer and all) I asked nearly everyone that I could find this morning. Until I found the ultimate of ultimate, the queen bee, the big kahuna, the mothership... Dr. Shroff. She informed me that my procedure was to be on Wednesday. Good, Wednesday.

By nightfall, I was informed now by a few more sources that my procedure is scheduled for tomorrow. So much for knowing anything. I think from now on I am just going to invite the practice of winging it more.

(By the way, this first procedure that I am to have will take place at a hospital close by. The reasoning is, not because it is a surgery, simply because it is a procedure involving the spine... my spine. From the sounds of it it works much like an epidural, except in reverse. They will be injecting cells straight into the outer, protective layer of my spinal cord known as the myelin sheath. So, with hope it will bring about sensation, not take it away.)

From everyone that I've talked to, this should be a big-deal kind of day. Since I haven't had any "earth shattering" progress yet, everyone is sure that this procedure will make a marked difference for me. Fingers crossed.

Me Vs. The Bathroom

Today was Erin's birthday. She arrived back to the hospital early this morning after cutting her vacation short. It was really good to have her back.

Due to said birthday Sarah and I decided to surprise Erin and take her to The Imperial for lunch. The Imperial IS the finest hotel in Delhi, maybe in all of India by my impression. It is quite enormous and filled to the brim with "hello madam"s, marble, food, gold trimmings, classy businesspeople, and well-overpriced souvenirs.

After being shooed away by the thought of swimming in their Olympic-sized pool, we settled on lunch at one of their various restaurants. The meal was good. This was my third veggie burger, although it is more like a falafel patty. Everyone satisfied, we were ready to be on our way, but of course--I HAD to use the bathroom.

Now public bathrooms and I have never gotten along very well. Not because I am even remotely worried about foreign, crawly bacteria; more so because of a width issue. My wheelchair, being as wide as it is (by the way, far wider than necessary) has an extremely hard time fitting through bathroom doors. Whether it be a restaurant or even a friend's house, bathroom doors are not my thing.

Needless to say, after entering a very polished lavatory with my gastronomically satisfied companions, I took a quick turn and yelled something to them as I left, something about seeing if there was some other bathroom for me.

I spoke with this beautiful woman in a velvety red saree (not sari, I've been told). She said that she would personally escort me to the bathroom. I followed her eagerly for my bladder but reluctantly for my brain. When we arrived to this new bathroom, it appeared much the same. I explained the issue as best I could using few words and many gestures. Velvety woman felt horribly almost immediately...I could tell by her face. She quickly summoned another worker to find me something suitable. I felt like I was a guest in a palace, but nonetheless pretty uneasy about the special accommodations. Velvety woman and I sat in the bathroom for a few minutes alone.

She asked about the reason behind my wheelchair. She asked about getting better. She asked about my friends. It all made her tear up, every last word. I am not entirely sure why. I am pretty sure that I didn't have to say anything for her to tear up; she had her own story of me inside.

Within only a few minutes I had left Velvety woman to her compassionate thoughts and was quickly following another hopeful helper. This time I was even more eager in both bladder and brain. The attendant unlocked a large room door with a card key and I motioned me in. The room was full of desks and brand-new computers. To the side, a long hallway of coat hangers, and near the end of sight a very wide door and toilet. Nirvana. I thanked the man immensely and lost view of everything except the toilet. I closed the door behind me and was relieved at all ends.

Feeling much better about it all, I left the toilet, walked through the coat hangers, back to the computers and out the...wait...the door...it's locked.

Panic set in immediately. No card key, no key at all. I am not a guest here. I don't even know what wing I am in at this point. How do you get out of here? Jiggling the door handle way too hard seemed like the only appropriate approach.

After only minutes, or maybe it was seconds, an attendant walked by. I heard a, "Can I help you?" Which I followed with a very quick, "Yes, I am stuck!" He opened the door expecting that the me being stuck was in my chair...so he politely asked if he could push me to where I was going. I declined and made it back to my friends who were now enjoying themselves on some big leather couches.

"Why is your trach scar red?"
"Because I was freaked out, I guess."
"In the bathroom?"
"Yes."

Poor Sarah...

I keep asking her, "did you see that?" or "can you feel that?"

I think that I am pretty desperate for something to happen, ANYTHING. All of the doctors and sisters and physio-therapists keep telling me that something is going to happen, so I want it to happen now. Not because I am impatient or because I necessarily think that something should indeed happen... more so because I don't want them to feel bad if they are all wrong.

T
W
I
S
T
E
D,

H
U
H
?

I am told that there is no way of telling through any sort of x-ray machine or MRI where exactly the damage is done to my spinal cord. With that said, there is no telling what part of my spinal cord is most affected or least affected. Everybody is different. Which is as true as it is for injury as it is recovery. I have seen and talked to various patients in the last few days with the spectrum of issues that have brought them to this little clinic in Delhi; and with that I have seen the spectrum of responses to the treatment as well.

It's hard to wonder how my body may or may not respond to the treatment. To be perfectly frank, either way it scares me to pieces. How will life change if my body changes? Do I have deep-rooted hopes that will be shattered if nothing comes of it?

So I suppose it is still very much a waiting game.

And as for Sarah, she will continue to entertain the constant chatter of my lower extremities, quite possibly to no end. I owe her big time.

Dr. Honor

Two more stem cell injections into my thighs today. So far, no kicking or jumping or toe tapping... but we are all hopeful.

To help the stem cells feel more welcomed, Sarah fashioned some very nice temporary tattoos to do the work!

Seeing how totally awesome and fabulous I looked, the trend quickly caught on. As I near my bedtime, Sarah and I can proudly say that we now have one of the sisters bearing a yellow, sparkling star tattoo on her forearm and one of the night doctors with the Chinese symbol for "honor" on his biceps. I will now refer to him as Dr. Honor (mainly because I can't quite nail down the majority of the doctors' names).

Hopefully we will continue to at least be major trend-setters during this surreal experience!

Auto-rickshaws: The Latest In Thrill Rides

If you are at-risk for seizures or may be pregnant, please consult a physician before viewing.

Hold on and enjoy the ride!

Googly Moogly and Other Fine Remarks

Googly Moogly is the term that I used to describe what is more commonly known as "Delhi Belly." I prefer this term because it is actually far more indicative to what it feels and sounds like to have this international gastrointestinal delight. Googly Moogly hasn't hit a home run yet, in fact, he is still warming up in the bullpen...

Aside from unearthly bodily functions today has been pretty exciting to say the least. This morning I was injected with my first official dose of stem cells. They injected roughly 40ccs into my right hand, directly to the vein. This was sort of a pivotal moment, although I think that I was trying to defer it at the time. It wasn't until my next injection that I had just before dinner that sort of spun me. Maybe it was the fact that they injected me this time twice, once in each thigh, intramuscularly. For those of you having trouble picturing it, they jabbed the syringe at a 90-degree angle straight into my thigh. As this jabbing proceeded I felt as though my muscles were tightening and my legs were full. NOW, this is where it gets sort of cloudy. I know what it feels like to feel my legs. I did it for over 16 years. So when I see a needle poking down into my muscle, I know very well what that should feel like.

Well then, where is the line drawn between what my mind remembers and what my sensory neurons tell my mind at a given instance? Who's to say? That is exactly why this whole thing is a bit difficult to assess.

Sarah and I had a strange moment of feeling uneasy as we evaluated through a makeshift physical examination. At one point it looked like my leg moved (when in fact it was a silly combo of tight hips and pillow positioning), and both of us got this cringy look on our faces as though we had just eaten about 30 not-so-ripe lemons. I am not really sure why it is so distasteful to entertain the thought of me moving my legs and such; isn't this exactly why I am out here?

Change, in all forms, takes time I suppose.

Welcome Home Dr. Shroff!

Today was the day. After a 27 hour plane ride from the States, Dr. Shroff arrived at the Green Park Clinic early this afternoon. I met with her right away. She is a beautiful woman with a wonderful sense about her. Maybe it was the fact that SHE is what I have been waiting for, but regardless I felt totally at ease and comfortable in her presence.

She immediately asked me what I expected to get out of this experience. "To stand, right? Bladder? Bowel?" In shock about having to respond to an unimaginable expectation somehow without allowing that realm of hope to enter, I simply replied, "sure." With that we went into the Physio room to show the doc my tricks, or lack there of. She called it "technical difficulties." What she is referring to is the fact that it has been 11 years since my accident and I have a ton of tightness and restriction in my hips and knees particularly. Normally this wouldn't be such a hindrance...I just had to compound that with the fact that I have 2 metal rods running the length of my left femur and right tibia. (This is the only time that being a robot has NOT come in handy.) These implants keep the physio-therapists from all the potential physical aggression of their tenuous job. I was told that if we were able to completely straighten out my legs I would have been in calipers (braces) by next week. Maybe I didn't want that Forrest Gump look anyways.

Even with these challenges, Dr. Shroff remains hopeful and says that we will figure it out. She injected me with my "test dose" of cells. This was about 5 to 10 ccs of stem cells warmed after being stored in a freezer. This dose was injected straight into my shoulder muscle just like any vaccine or shot I've received in the past. No fairy dust. No Abracadabra.

The test dose went fine. No adverse reactions; not like they were anticipating them in the first place. All of the doctors told me that no one has ever had an adverse reaction because there is simply nothing in the cells that could provide such a display...it is only procedural protocol that they must follow. Therefore, my full treatment will begin tomorrow.

To keep my feet in good health while I am in bed the sisters have created, with the utmost technological savvy, glove booties (as I would like to call them.) Basically they are 2 water-filled medical gloves to rest under my feet and heels so that I get some extra cush.
To make these "booties" feel less strange to me I have outfitted them with faces: one of me (open-mouthed on the right) and one of an Indian woman (with the bindi on the left).

Tomorrow we will be in full-swing and I am very much excited to live every moment as it unfolds. It is sort of reminiscent of having your doorbell ring only to find an anonymous package, wrapped beautifully, at your door. You have no idea what is inside, and it sort of makes you nervous to think about how it found its way to your door...but nonetheless you want to dream on it for a minute then rip it open to see what's inside.

A Vision In Teal

A little 2 minute hello from all of us to all of you. True to form, we spent the majority of those 2 minutes describing food.

By the way... today the three gals had a mild shopping spree. If interested, the entire details and "contest" can be viewed on Sarah's blog!


Indians are quite interesting people. It doesn't matter the question nor the form of the question and the answer is always, "yes." They also do this funny nod-thing where their head circles as they shake their head. We are told that this can mean a myriad of thing ranging from "yes," "maybe," "I don't know," and my personal fav, "I am not interested in what you have to say." I think that THAT may be the answer we get most often, though it is still too hard to tell.

There is one woman in particular that intrigues me. She isn't one of the sisters, and I am not quite sure of her role at the hospital but she usually takes our meal orders, makes my bed, delivers mail, and pretty much is found around every corner of the hospital. She is a beautiful native woman who only dresses in full teal-colored saris. Her hair always pulled back into a tight bun, perfectly revealing gorgeous bindi head jewels and a gold medallion of a nose ring. Sarah and I have spent much time pondering whether she likes us or hates us. Her English isn't very conducive to reveling emotion. I really want her to like me just for the fact that she has a true calming aura and awe-inspiring smile. Today, after a long time in the heat of the Delhi day, we returned tired and weary. Sarah ran next door to the bank for me and I awaited her return in the lobby. As I waited, the teal mystery woman waited with me. She looked dead into my eyes, walked for me, and knelt down to me resting her hands on my knees. She told me that it must be hot because my cheeks were red. (Aren't my cheeks always red?) She smiled and pinched one of my cheeks like she was conversing with a chubby, little baby. Her smile told me that she was going to look after me. I breathed a sigh of relief, maybe two.

Today I Got Pooped On By An Indian Crow

What's strange is that I sort of feel like I am on vacation right now. I get to go out and experience Delhi, see the sights, you know, be a tourist. I have someone that makes my bed and cleans the room. The only difference is that I have this nervousness, this unknown anxiety looming over me every step of the way. This will be better tomorrow.

Tomorrow I will get my test dose of cells. What this means (or at least what I have gathered from various half-responding sources) is that I will have a minute amount of cells injected just below the surface of the skin on my arm. We will wait to see if there is any adverse reactions: any swelling, redness, that sort of thing.

And for everyone wondering...YES, I have finally secured some soy milk! It has been a challenge, one not for the weak at heart, but successful nonetheless and I feel much more whole again.

One last thing before I head down to Physiotherapy-- auto-rickshaws are probably the fastest and most affordable ways to travel in Delhi (and absolutely the most exciting). Here is a photo of some for mom because she asked: