Round 4, Day 29- What If, Indeed

I haven’t had much to say in the last two weeks or so because I’ve been busy elsewhere, mostly being sick. I started this trip to India by catching a cold. After several days, I kicked my head cold, and then, oof… Robin Williams. Depression and then a nasty cough sunk their teeth into my flesh and shook me around for a couple days before finally letting me go again. Resisting the urge to go quiet, I reached out through social media, and friends came out of the woodwork to lift me up. And, man, was I lifted! I couldn’t believe some of the messages I received from friends and family. In just 24 hours I was reminded of the love that No. 1 and I carried with us to the other side of the globe- the lightest and most important cargo in our carry-on luggage.

Since then, whenever I wasn’t needed to support my husband through his various stem cell treatments and procedures, I’ve been writing like mad, reaching a hand out to other Lyme sufferers around the world and letting my fingers fly across the keyboard while I answered questions about Nutech and our experiences here. I’ve become more involved on the Lyme Disease Awareness Group on Facebook and have volunteered my social media, writing, and other skills to a group that is working to launch a new viral video campaign in time for next May’s Lyme Disease Awareness Month. Inspired by the recent Ice Bucket Challenge for ALS, our goal is to raise awareness, get more people involved and more donations to the various research foundations and grant programs that currently exist for Lyme. Together, we hope to move Lyme disease research, testing practices, and treatment forward. I am thrilled to be a leader within the movement and hope that many of you will continue to offer your support when the time to launch the challenge draws near.

We are now just a few days from the end of our journey at Nutech Mediworld. On Monday, we will leave India without plans to return in the foreseeable future. No. 1’s SPECT scan results came back, and while not perfect, they were within the ‘normal’ range. But, more exciting than any test results he could have been given, he awoke Friday morning with a gift he hasn’t had in over eight years: freedom. Friday was India’s Independence Day, so most of the hospital staff was given the day off, and all the patients’ physical therapy sessions were canceled. The sky dawned a bright blue, and the breeze picked up just in time to fly the nation’s flag and the colorful paper kites vendors had been selling around the markets for several days prior. India had been free of Britain’s rule for a full 67 years, which is funny because my husband woke up that morning and felt really free for about 6-7 hours from the condition he’d been living with for nearly a decade. He got out of bed with a smile on his face. He went down to the ‘physio’ room and did his workout routine, not because he felt he should, but because he actually wanted to workout. We had a lovely afternoon. Eventually, he began to feel tired and Lyme-y again. But, the window was there. The light shone through brighter than it ever had before. He saw it, clear as day. And, instead of being overwhelmed with despair when that light began to fade, he held the memory of that light with the knowledge that the next time it dawns, it will likely stay longer, like the sun that travels overhead in the spring.

In those few hours, we tossed between us the two mottoes we adopted this year until they bounced off the walls of our little orange room. “What if?” he’d ask. “Why not?” I’d reply. And then we’d both smile, knowing that those four little words are enough to make us believe that the future is a wide-open space without any can’ts, won’ts, shouldn’ts, or nevers pre-written anywhere on it. In a few days, we will leave India and Dr. Geeta’s stem cells with more hope than we’ve ever had before. We will return home with more friends, fond memories, and support than we ever could have asked for ourselves. And, we will venture forth into this life with more optimism, less intimidation, and a greater spirit for adventure than we ever could have imagined.

And with that, in much the way I announced the beginning of our journey to India with lyrics to a song, I’d like to close it with a poem that honors what we’ve been through these last eight-and-a-half years. It will offer us hope and direction for the future and gives a nod to something one of our favorite night-shift doctors used to exclaim to my husband over and over on our very first trip. Thank you for coming with us on the journey of a lifetime. We love you all and could never, ever thank you enough. ❤

If- by Rudyard Kipling

If you can keep your head when all about you   

    Are losing theirs and blaming it on you,   

If you can trust yourself when all men doubt you,

    But make allowance for their doubting too;   

If you can wait and not be tired by waiting,

    Or being lied about, don’t deal in lies,

Or being hated, don’t give way to hating,

    And yet don’t look too good, nor talk too wise:

If you can dream—and not make dreams your master;   

    If you can think—and not make thoughts your aim;   

If you can meet with Triumph and Disaster

    And treat those two impostors just the same;   

If you can bear to hear the truth you’ve spoken

    Twisted by knaves to make a trap for fools,

Or watch the things you gave your life to, broken,

    And stoop and build ’em up with worn-out tools:

If you can make one heap of all your winnings

    And risk it on one turn of pitch-and-toss,

And lose, and start again at your beginnings

    And never breathe a word about your loss;

If you can force your heart and nerve and sinew

    To serve your turn long after they are gone,   

And so hold on when there is nothing in you

    Except the Will which says to them: ‘Hold on!’

If you can talk with crowds and keep your virtue,   

    Or walk with Kings—nor lose the common touch,

If neither foes nor loving friends can hurt you,

    If all men count with you, but none too much;

If you can fill the unforgiving minute

    With sixty seconds’ worth of distance run,   

Yours is the Earth and everything that’s in it,   

    And—which is more—you’ll be a Man, my son!

Source: A Choice of Kipling’s Verse (1943)

True Love at The Kingdom of Dreams ❤

Round 4, Day 10: Paper Tigers Have No Teeth

“The most difficult thing is the decision to act, the rest is merely tenacity. The fears are paper tigers. You can do anything you decide to do. You can act to change and control your life; and the procedure, the process is its own reward.” -Amelia Earhart

Most people who’ve heard about our experiences in coming halfway around the world for stem cells tell us we are brave. Some have told us we are straight-up crazy. Others listen and just shake their heads, absolutely sure they could never do the things we’ve done; namely, coming to India and placing our faith in a foreign doctor and a treatment for my husband’s Lyme disease that, after more than a dozen years in practice, is still very much in its infancy. Everyone wants to know if No. 1’s previous rounds have worked. Because really, HESC (Human Embryonic Stem Cell) therapy is still considered experimental, and there are relatively few patient accounts one can point to and say, “See?! Look! Here it is: indisputable proof!”

Not to say proof doesn’t exist. Spinal cord patients are increasingly coming to Nutech for a never-before-believed-in chance to control their disconnected bodies again. After a series of visits, they are returning home with pictures of their regenerating spines under their stronger and more responsive arms. Wes Bandemer comes to mind, here (see video). It’s difficult to argue with X-rays that show healing tissue around a previously severed spine. So many others with a variety of ailments have found success here, too, and Dr. Geeta Shroff is right now working to publish her findings in peer-reviewed scientific journals on the success of HESCs in chronic Lyme patients. What that will mean for the expansion of her treatments, I can’t say, but proving they are effective so they can be made accessible to the rest of the world has been something she’s talked about since at least as long as we’ve been coming to Nutech. I would love to think that we will have played a part in that potential healing around the world.

Did it take some bravery to leave the comfort of home and begin a journey based almost entirely on faith? Yeah, I can see that. Does it make us seem a little crazy to put our trust in a treatment still not technically proven by the scientific community? Yep. Probably. Were we afraid to put our trust in a doctor who had been called all manner of insulting names by a number of vocal doctors and researchers at home? A little. At first. Were we going to let that stop us from doing it, anyway? Nope. Apparently, not.

Fear was something that ruled many of our actions when No. 1 first became ill. Really, even before then. No. 1 and I have been discussing lately the daily fears we lived with that limited our experiences before any of this ever began. While my greatest fear was rejection (emphasis on was), fear of not being enough, his fears were more about doing. I wanted to adventure, to travel, to meet all the people! And, while he said he wanted to do those things, too, they were actually pretty intimidating to him. So, the grand trip to Europe I’d dreamed of since I was small was always something to do someday, never something we planned for in the present tense.

Surf’s up!

If I said I wanted to surf, he would nod in agreement and secretly think to himself, maybe. Lyme forced him to push beyond those fears. In this way, my husband’s illness s-l-o-w-l-y became seen as a blessing, rather than a curse. Anyone who has a loved one suffering or is suffering themselves from chronic disease will tell you that that way of seeing things is not a battle easily won. But, given almost a decade of fighting for his life, traveling around the world multiple times in the search for a cure, and a year of frequent surf sessions under his belt, the world is now accessible through a wide-open door, and a new surfboard is at the top of this year’s Christmas list. And, if I do say so myself, he looks mighty fine in a wetsuit. 😉

There were times pre-Lyme that I watched No. 1 hesitate to speak to a stranger; a seemingly ridiculous notion, now, as he has been pushed time and again to venture forth, try something new, ask the difficult questions, answer the even harder ones, stand up for himself, and take charge. Now, he is right there with me in seeing the world as something to explore in a constant state of wonder, not fear. In its own way, getting sick pushed him to become a more complete version of himself, a man other people could look up to and say, “Wow. That is one hell of a human being.”

And, I’m the lucky girl who gets to be his wife!

I am so proud of the man my husband has become. In learning that his fears have no actual teeth and daring to take the kind of risks that don’t always guarantee reward, including his treatments here at Nutech, he has learned to brush aside these ‘paper tigers’ and live his life on his own terms. It is a life worth living, I believe. And, living that life with him is proving to be its own reward.

Rawr!

Round 4, Day 4: Here we go again…

It’s Sunday evening in Delhi, and after a short nap, a good cry, and a delicious takeout dinner, I think I am finally settling back into life in India. We returned to Nutech Mediworld, the stem cell hospital and our home away from home on the other side of the world, early Thursday morning after about 45 hours of travel time.  After nearly two years away, coming back feels to No. 1 and I as both a homecoming and a long goodbye. This is our last trip.

Our life has changed a great deal since last we were here.  India has not. The heat and noise, the good and (very) bad smells that greet us as we walk the streets, and the dark eyes that watch our (but especially my) every move threaten to overwhelm our senses, even on a good day. Jet lag and the construction that never, ever stops in the building next door make sleeping through the night feel like an extreme sport: nearly impossible. Earplugs be damned.

The topography of the hospital has been altered slightly with a new café downstairs, and the deletion of the front patio in favor of a portable shed that acts as extra storage for a hospital with limited space. And, a few dear souls we hoped to reconnect with have moved on to other adventures: marriage and new jobs, mostly. But, the spirit of the rooms and hallways they once filled remains the same.

Fortunately, another thing that hasn’t changed is the care and kindness of the people who look after us while we’re here and love us long after we’ve gone. Their smiles and hugs have come with the constant flow of doctors and nurses that are in and out of the room throughout the day and into the evening. Everyone has been eager to welcome us back, to know how we’ve been doing, what we’ve been up to, what our plans are during our stay, and what we want to do next.

As for the treatments, No. 1 was jabbed more in the first day than he was in the first week on our first visit. Day one, he received two intramuscular injections in each arm, one in each cheek, a deep spinal muscle injection in the neck, and two IV pushes. That night, I woke up to find No. 1 with a fever, wandering the room, and looking for Tylenol. I buzzed the nurses, and they responded immediately, their office just a few doors down from our front-corner room. It’s not uncommon for patients to experience fevers after large doses, but I think No. 1 forgot what it felt like to have an army of tiny soldiers march onto and takeover the battlefield that is his body. Far from complaining, each new batch they push into him is a welcome answer to a years-old question: how do we move forward?

For now, my next move is to sleep. It’s been a long, hot day, my husband is already snoozing lightly beside me, and a new week begins in little more than eight hours. Rest is imperative, and this soldier is battle weary.

More soon to come, including pics of our journey so far, so stay tuned!

Leading Lyme-Literate MD Talks About Current Lyme & Chronic Disease Concerns Worldwide

Please watch this and share. It is becoming more and more likely that, if you haven’t already been touched by Lyme in your life or the lives of others you know, you soon will.  Together, we can save lives. 

HOPE-y New Year!!

Welcome to the new year, friends! In the spirit of Being the Change, I hereby declare 2014 the Year of Love, Hope, and Change. With that in mind, please join me in supporting LymeLight Foundation and sharing their messages of hope for children with Lyme disease and their families.

And, if you’re in the Bay Area, check out the Dart for Art event, coming up March 7th! People are suffering. Let’s make it better.

STOP! THIEF!

Lyme disease is a thief and a murderer. Did you know that?

It robs a person by first stealing his body and his mind. Lyme takes away words and feelings and a body in motion. The bacteria get into the brain and can make a person feel he is losing his mind. And, there are many health professionals out there who are happy to agree. My husband’s first meds were psych meds. Lyme tears out throats, in that patients (and caregivers) get tired of talking about pain and withdraw. It seems almost lucky, then, that it also rips out hearts so sufferers can stop caring about relationships or the future or themselves. But, a broken heart does not a healthier person make, adding suicide as a big risk for Lyme sufferers.

Lyme does not care if you are an adult or child. It feels no sympathy. It creates a perfect storm, literally eating through soft tissue like the brain and the cartilage in all the joints, hijacking the immune system until it’s had enough and joins ranks in the war against the very host it was meant to protect, who then presents with the clinical symptoms that are diagnosed as MS, ALS, Parkinson’s, Autism, Depression, Fibromyalgia, Alzheimer’s… the list continues.

I know all this because I’ve seen it. I know because my husband and I lost another friend today.

Ray (left) was kind and funny and a good husband to his lovely wife, Nancy. He was cheeky and strong, with a small syringe-shaped tattoo that read “Nutech“. We met him and his wife there, in India. He suffered from ALS and Lyme. I remember meeting him in the stairwell, by the elevator, as he came up from his afternoon physical therapy. All of us ate several meals together and gathered to hang out and talk on the patio or just watch the rainstorms from the lobby. My heart is breaking for his family today, especially his wife. It reminds me how grateful I am that my best friend is still with me.

More than once in the last (almost) 8 years, my sweet husband wished to die, especially in the first five years. Had his course with Lyme gone even a little bit different, he might have had that wish granted. But, crazy as it sounds, that STILL is not the scariest thing about Lyme.

The scariest thing about Lyme is the number of people getting it every year who have no idea. The CDC recently admitted that the roughly 36,000 people who are diagnosed with Lyme is only about 10% of the population who are contracting the infection each year. This means that (on the low side) about 300,000 people are newly-infected each year around the US.

• If only 10% of 300,000 people contracting the disease are being diagnosed each year. That means somewhere in the neighborhood of 270,000 added men, women, and children are walking around each year without any idea why they don’t feel quite right.
• Each time we vote for a new president, ONE MILLION new people are sick who don’t know the real reason why and are therefore not receiving the right treatment. To give you a little context, San Francisco has less than a million residents, Los Angeles, the second largest city in the US (by population) has less than 4 million residents. And the entire US had a population last year of about 320 million.
• So, correct me if I’m wrong, but that means (not adjusting for region or the people who are already diagnosed) the average American citizen has a 1/1000 chance this year of being infected.
• There is new evidence that Lyme may be sexually transmitted, can be passed along in utero, and certain strains have been transmitted through blood transfusions. Oh, and scientists are looking at the possibility of transmission from mosquitoes and fleas, too, so it’s really not just ticks that we’re talking about, anymore.
• And, then, if you do get sick, you have ONE chance out of ten to find out what’s wrong with you so you can even begin to treat it, meaning you may actually have to see more than ten different doctors before you’re able to get any real help.

I don’t know about you, but, quite frankly, I think those odds suck. And that is a lot of work for someone who feels like they are suddenly falling apart, going crazy, or dying for no reason.

My intent, however, is not to terrify you. My intent is to arm you with the tools you might need in the fight for your life. Lyme is not only contracted while hiking and camping. It can be found at the park or on the school playground. Every day you take a walk, every day your child plays in the grass or your dog goes outside, your family is exposed. Your risks decrease as you move into more urban areas, but ticks cling to birds and trees and grass and clothes and fur until they get where they’re going. And, your blood supply is exactly where they would like to be going. Like pollution, terrible drivers, and the sun’s damaging rays, ticks are just one more thing to be aware of when we walk out our doors. We have to face the world prepared if we want to pass through (relatively) unscathed. Even then, it’s probably a crapshoot, right? So, arm yourself with the one thing that could save the life of you or your loved ones: information. It’s the reason I’m still here, working on this blog post, instead of writing about… hmmm… I don’t know… anything else?

People are dying. Our friend just did, and now an entire community is left to grieve. This is not to say his life was not beautiful and that his path was not meant to be as it was. Ray had a spirit that shone straight out of his eyes and lit up his smile. He laughed and sang and loved, and I don’t believe he’d want people to feel sorry for him. But, your experience does not have to be his. Your husband’s, your girlfriend’s, your mother’s, your child’s experience does not have to be like Ray’s. In fact, Ray dedicated his journey with Lyme and ALS to “HOPE”; for a cure, for a better life. Not just for himself, but for all of us.

Awareness, early detection, and immediate treatment can help. The right tests and a doctor who knows what he’s looking at can make all the difference in the world. And, your willingness to keep an eye out and advocate for your and your family’s health might just help to stop a killer.

(Photos by Melissa Compton)

Gone, But Not Forgotten

I know.  It’s been a long time.  When I wandered over to my WordPress account yesterday, I was surprised to learn I hadn’t even logged on in over six months.  But recently, a fair number of people have asked me about my blog, and each time I’ve felt a little tug to return.

Since my last post, No. 1 and I have been to India for a third round of treatments, rented out our house, and moved twice.  More than seven years after he first got sick, my husband’s neurological symptoms are still a big part of our daily lives.  And though there are sometimes entire months that he continues to feel extremely ill and days in which he must force himself to get out of bed or off the couch, he has improved.  Dramatically, actually.  Just in the last year, we’ve picked up yoga and surfing, he’s playing the guitar, and we’re even taking dance lessons.  We had a few extra days in India after his scheduled treatments, so we traveled 18 hours round-trip by train and spent Diwali in the Himalayan foothills.  If you’ve watched the Amazing Race, you know what train stations look like in India.  These things wouldn’t have happened two years ago, or even one.

Whether he is still fighting residual bacteria or rebuilding the parts of his brain that were damaged by those bacteria, or both, is unclear.  The stem cells he’s received in India should be able to help his body do both, but it seems reasonable that they would be more effective with fewer tasks to divide among them.  At home, we are attempting to support his body’s immune system and natural healing abilities as much as possible, including juicing, vitamins & supplements, lots of yoga and long walks sprinkled with a little surfing and basketball, meditation, herbal antibiotics, a gluten-free and mostly vegetable-based diet, and so on and so forth, seemingly forever.

There is so much more I could say about our journey, but the reason I came back now is because I was reminded yesterday of this spectacular testimony for Lyme disease patients and their care in Pennsylvania.  It was given in 2011, but the information remains extremely relevant, especially this month, as Pennsylvania prepares to host the ILADS sponsored Lyme and Tickborne Disease Conference, and the state senate sends SB177 back to appropriations.  While awareness is growing, the information Dr. Smith has to share should be common knowledge worldwide.  Birds and insects migrate, and people move pets across continents, so it’s silly for any nation (except maybe the Antarctic) to think Lyme isn’t already affecting its citizens.  Lots of people like to tell you Lyme isn’t in their area.  We heard that a lot in India, actually, and patients here on the West Coast hear it all the time.  But statistics like this report say otherwise, and if it’s made it to a totally isolated continent like Australia, which it has, I’m just gonna throw it out there that perhaps it isn’t so much that Lyme hasn’t made it to countries like India, yet, but that too many doctors there don’t know what they’re looking at.

Anyway, I would like to encourage everyone to take a few minutes and listen to Dr. Smith’s testimony and maybe even share this and help me spread the word about one of the fastest growing diseases on the planet.  ‘Cause it doesn’t have to be like this.  It really doesn’t.

Stem Cells, SPECT Scans, and ZZ Top??

Four weeks have passed since we arrived in India, and only six days remain. It’s about this time that our minds transition from feeling desperate to go home to wishing we could stay. Last time we were here, we were reasonably sure we would be coming back for another round of treatments. This time we’re not so sure. Financially, another trip could push us over the edge. To survive with Lyme, treat it at home, and come for stem cells twice we have emptied our savings, closed out old 401K accounts and borrowed tens of thousands from our current one, used up all the equity on our home (which, like most homes in America, is now so upside-down it will take years to recover), had to ask for help from you, our family and friends, and racked up enormous balances on several credit cards. Another trip could break us. So as we come to the end of our journey here, I find myself looking at my current surroundings as though I may never look upon them again. And it makes me sad. I know I’ve said it before, but as dirty, noisy, smelly, frustrating and crazy-making India is, it is also shockingly beautiful and, ultimately, humbling. Coming to this country of extremes is an opportunity to discover who you really are, what is really important to you, and how you plan to react to the real challenges life throws your way. I would love to think that we’ll return someday. Maybe for stem cells. Maybe not.
Maybe we won’t need to.

Sept: Before ESC's/ Nov: After 2 Months of ESC's/ Jun: NOW! 😀

On Monday, we received some good news. No. 1’s SPECT scan results came back, and the measure of improvement is SPECT…wait for it…acular! In talking with Dr. Geeta Shroff, the prognosis is excellent and hope is high.  For those who don’t know, the dark patches are bad, showing limited oxygen to the brain.  So the lighter the image is, the better.  We compared last year’s two scans (one in September before stem cells and one in November after two months of ESC injections and procedures) to last week’s, and the difference is shocking. Nearly all the areas of his brain, starving for oxygen for so long, have been opened wide and are once again receiving life-giving blood. Neurons, axons, and all kinds of tissues are being renewed and rebuilt by Dr. Geeta’s stem cells, which will continue to divide and differentiate for the next nine months to a year. On top of that, though he will likely have more ups-and-downs, today No. 1 is feeling better. He woke up this morning feeling more rested after a good night’s sleep filled with less chaotic dreams. The fog has lifted a bit, and his ever-present headache is gone. Like the whole of India, waiting for the monsoons to bring life back to the land and its people, we have waited for hope to return, and, finally, finally, it has. Like the monsoons, the relief of his symptoms may last only a few hours. If we’re lucky, perhaps a few days. But however long it lasts- after looking at the pictures of his brain- he knows that relief will return. And one day soon, it’s gonna stick.

ZZ Top in Concert, New Delhi, India

Monday night we joined our friends on the patio for our usual evening party and shared the great news. Everyone was overjoyed for us, wondering aloud at the massive changes and hoping that their results would be as successful. Showing those who were still in the first stages of treatment, we assured them that this stuff really does work, to be patient, hang in there, stay positive and have faith. Someone brought out a laptop and speakers, and we blasted music into the hot, wet Indian air. Next thing we knew, Ral, one of our favorite Australians was tying a white, cottony bag around his face to give himself a downy beard. A pair of sunglasses, a branch that nobody was using and another, darker bag as a hat finished the look, and the Nu Tech patients, caregivers, employees, and half the neighborhood were treated to a concert by ZZ Top!

Groupies & Roadies

The girls in the group became instant groupies, and, Brett, another favorite Aussie was roadie for a night. I don’t think I’ve laughed so hard in… well, I really don’t know how long. The combination of ecstatic joy for my husband and myself and the love I feel for the people that surround me here lifted my soul into the heavens to dance. I almost couldn’t sleep that night, as my heart was set to burst, so I lay awake and whispered my prayers to the darkness with a smile spread from ear to ear. It is the same prayer I’ve held close to my heart for so long. I prayed that my husband and I might see health, so that we can bring health back to the world. I prayed for our Nu Tech family, and our family and friends at home. I prayed for peace and wisdom and children. I prayed for you, readers, and I prayed for India.

All you need is love.

I prayed that one day we’d be back, not for more treatments, but as healthy individuals, come to show our future children where our lives and theirs truly began.

Holy Stem Cells, Batman!

Indian Window Repair Service

Ah… Gautam Nagar.  For the last two days we’ve been over at Nu Tech’s secondary location while No. 1 received his second procedure this month, in which the doctors inserted a spinal catheter in order to administer large doses of stem cells over the course of 36 hours.  Staying at Gautam (or Gotham, as the patients and caregivers call it because of the older, less appealing neighborhood it resides in) is always an adventure in attempting to sleep and keeping your mind busy.  Without our friends from the other hospital and the Internet connection we so heavily rely upon, we fill our time by reading, writing, playing computer and card games and trying to stay cool.  Not an easy task when your ‘VIP’ room is missing an entire windowpane, the sauna-like breeze competing against the lumbering air-conditioner.

Duct tape fixes EVERYTHING!

Luckily, we remembered Duct Tape this trip, and I managed to construct a pretty decent cover for the window.  We both slept easier knowing we were unlikely to wake up under a cloud of feasting mosquitoes, geckos playing across my bed sheets, or any number of other critters who might see a large hole with a light behind it as an open invitation for a party.  Through the same set of windows, the noisy chatter and shouts of tiny children at play, all in various states of dress and relative poverty, float cheerfully in and keep us company until late into the night.

Staying in our room at Gautam is like living inside a giant pastel Easter egg.  Three walls are painted a cheerful, sunny yellow, the fourth a pale lavender, while bright turquoise curtains with a bold circle pattern clash garishly when viewed in line with the pink- and purple-flowered sheets.  The sterile whites and ugly greens and yellows of hospitals at home have no place here.  Indians love color, something that seems to be sorely lacking in the West.  On our way home from our last trip, we had a short layover in Chicago, and I was immediately aware of the lack of color.  People hustled through the airport in black or gray or brown, and I mourned the lack of enthusiasm most people seemed to feel for getting dressed and showing off their brightest and best.  Elsewhere in the room, on the back wall, a small clock reads 2:36, day and night, never moving forward or back, a battery replacement long forgotten.

  

Laid out for bandage removal.

To the right of the clock, a scene from some European cliff-side town hangs in a frame over the hospital bed, where only people entering the room- and with a chance of escape- can see it, instead of those who must lie still for hours on end.  To the left, there is evidence of another painting, escaped or removed- a dirty outline the only remaining traces of a frame that once was.  A white plastic garden chair, a long wooden bench with black vinyl padding, an upholstered fold-out floor mat for me, a small metal table, a wall of cupboards that hide our little fridge and hold up the small Philips television, and a small white door labeled ‘TOILET’ round out the rest of our space.  Adequate and clean, if not exactly comfortable.  Interesting, if not exactly beautiful.  Like camping in a trailer in the ghetto.  But we’re not here for the five-star accommodations, anyway.  We’re here to get better.  And this hidden, tired, Easter egg of a room just happens to be where that happens.

Wrapping the antibiotic IV port.

Just like at the other hospital, doctors, nurses, the hospital manager, and the ward boys come and go to attend to our needs and No. 1’s treatments.  You can nearly always tell who is on the other side of the door by the knock- tentative or assertive- and whether the visitor waits for the call to enter or simply opens the door and steps in.  Either way, a visit for any reason helps the time speed along a little faster, and we appreciate the distraction from watching the minutes pass by until we are discharged back to our home base at Green Park, where a pair of good friends waited to say goodbye.  To us.  To Nu Tech.  To India.

They will are headed to their real home in the States to heal and so that others can take their place at Nu Tech, in the room across the hall from ours.  Meanwhile, someone else is headed to Gotham to take our place, for a few hours or a few days, to receive a large dose of stem cells, lay still for hours on end, and hope for a Cure.  Or the Easter Bunny.  Or Batman.  Or all of the above.

One last shot with Ray and Nancy.

Return to India

Art installation above Indian Customs

The heat.  The noise.  The food.  The smells.  The sea of dark eyes, peering from a thousand dark and beautiful faces.  All of it came rushing back the moment we stepped off the plane.  We are back in India, six months after returning home from No. 1’s first round of stem cell treatments, and it feels as though we never left.  Come to think of it, it’s possible there’s a part of us that never did.  Or ever will, since there is so much that we have come to love about this unintended home away from home.

When we left here in November, we returned to California filled with hope and millions of tiny, baby cells coursing through my husband’s body.  We saw a few little improvements in his ability to sleep, eat, and get through the day.  But he was, admittedly, a little disappointed to not see the vast improvements he was told he might expect.  We waited and watched as the magical six-week mark we’d heard about came and went without much change.  The holidays came and went, too.  And, while everyone continued to tell him how much better he looked, he just didn’t feel it.  Like waves on the sand, small improvements would edge their way into No. 1’s awareness and then recede as quickly as they arrived, leaving him frustrated and depressed that all we’d been through to get halfway around the world had been for naught.

Taking a break at home with the kit.

While we waited for the healing to come, we rested, we meditated, we walked the beach, and we prayed.  Next thing we knew it was April.  No. 1 had a few good days in a row, and I could see a flicker of hope in his face that hadn’t been there in a very long time.  His depression receded.  He had more energy.  He was suddenly helping me around the house more, and he even told the guys at work that he saw himself heading out soon to join them again on the basketball court at lunch.  On the way to the doctor on a Friday morning, he announced with a smile, “I feel like I might be getting better.  I’ve been feeling pretty decent.  Not normal, but definitely better.  I think I’m finally on the right track.”  I could have leapt out the sunroof and ran the rest of the way to our appointment, I was so happy.  And it was then that we decided to return to India.  The tiny cells in his body had finally taken hold, it seemed, and we didn’t need any tests to confirm he was healing.  He could feel it!

Those two weeks were probably the happiest two weeks we’ve had together in the last five years.  It was a landmark two weeks.  But it didn’t last.  He woke up one morning during the third week feeling just as hung-over and swimmy as before, returning him to the waking nightmare that is Lyme.  My heart ached to help, to make his days easier, if not tolerable, and his nights a little more comfortable.  Mostly, I felt helpless.  I could only make his nightmare less intense, and even then, only by a little.  But if you know anything about healing with Lyme (or been following our story), you know that Lyme is a carousel ride: up and down, and round and round. Just because you feel yourself dipping down, doesn’t mean you’ll stay there, and our resolve to see this through hadn’t gone anywhere.

View from our window.

Landing in India was like stepping into a warm bath, both literally and figuratively.  Our friend, OP, was waiting for us at the airport, as before.  Hugs were exchanged, and we stepped out together in the dark and steamy 100°F, a typical temperature for Indian nights in the summer, while we waited at the curb for our cab.  More hugs were waiting for us when we arrived at Nu Tech Hospital, where the beautiful nurses seemed as excited to see us as were to see them.  Exhausted from twenty-four hours of travel, we collapsed in our room (just across the hall from our old digs on the second-floor) and slept until the ever-present horns of the cars outside could no longer be ignored.

Hanging out at Nu Tech.

We’ve been here now a little over two weeks, and though there have been a few changes since we left, the routine is so much the same that the feeling we never left persists.  Dr. Ashish and Dr. Prince have moved on to other adventures.  And the food continues to be adjusted, sometimes for the better and other times… well, not so much.  (We really need to start taking pictures.  Think strange lasagna, layered with ground mutton and raw peppers and then smothered in ketchup instead of tomato sauce or cannelloni stuffed with wilted iceberg lettuce instead of spinach… uhhh, what???)  We are still wakened by the sounds in the streets that indicate that the whole of India is beginning its day.  Mornings are filled with the smiles of the men who bring our breakfast and the nurses who take such fantastic care of my husband and myself.  Rita, (without whom the hospital never seems to run quite right) is a nearly constant figure throughout our day, taking our food orders, keeping our little fridge stocked, and ensuring our room, sheets, and towels are always clean and comfortable.  No. 1 continues to head to the basement for physical therapy in the morning and afternoon with time for a short rest between.  And whenever we are ready to head out and brave the intense heat, humidity, and traffic, Jyoti is there at the front desk, coordinating everyone and everything, answering our million and one questions, and fulfilling every request that is within her power to grant.  As always, Dr. Geeta Shroff rules over it all with a tender smile and a firm grasp on the symptoms and treatments of all those under her care.

Party on the patio.

Everyday we feel fortunate to be here, to be among so many amazing people- those who work here and those who have worked so hard to gethere.  Every night, when we gather with our friends (both new and old) downstairs, our heads fill with stories of how they got here, how they’ve been, and what they’re hoping to get out of this round of treatments.  We commiserate over the expense of getting sick, frustration with our governments that seem not to want to help, and how likely (or unlikely) it is that we’ll be able to return for another round.  Occasionally we share complaints about the heat, a lack of sleep, or the loss of privacy and quiet.  But mostly we share our wonder at a place that is so different from home, and in doing so, we create a home that’s all our own.  Our doors, our ears, our arms, and our hearts will remain open to one another long after we’ve returned to our countries of origin.  Our lives, ever connected by a common experience, will remain ever changed by the love we each share for one another.