Destination Delhi

I have been waiting for days for my nerves to kick in. I am still calm beyond reason as I sit quietly in the hospital room in Delhi. Dogs are howling in the alley behind me and I’m not tired, even though it’s 3 a.m. here (13.5 hours ahead of California). Aren’t I supposed to be anxious, panicked, scared or (insert your favorite neurotic adjective here)?

The plane ride was long, but bearable at about 20 hours. I passed time watching old Family Ties episodes on my personal screen and had several Indian meals and snacks far less horrible than I anticipated.

With my parents in tow for the first few weeks I am here, we look like we took enough medication to open a pharmacy. I brought the minimum amount I needed on the plane, but still the weight is heavy and as we walk, the pills dance a little jig in their bottles just loud enough to hear. The airports in San Francisco and Newark (our stopover) were a breeze with security. However, two separate incidents with wheelchair handlers has made me vow to never fly Continental again – even when I am able bodied and perfectly well. I cried twice in the same airport when the first wheelchair pusher was in disbelief that the pre-arranged ride was for me. Not only was it apparent in his face, but he then couldn’t stop himself from asking (and NOT in a nice way), “Why do you need a wheelchair? What’s wrong with you? Why can’t you walk?” I firmly tell him it’s none of his business (are they even allowed to ask that???) as I’m reminded of the stigma that goes along with a disease with no visible signs. I have all my hair, I am not limping (at the moment) and I am young. That immediately deems me to the public as healthy and able to walk long corridors carrying heavy baggage. The wheelchair Nazi finally admits he “wants to go home.” Apparently, his shift is over soon and I, especially looking ok, am not a priority. His other wheelchair friends quickly huddle around us, deciding amongst themselves, but not quietly enough, that I look fine and can surely walk. No one wants to take me. “For you?” they keep questioning as I’m already sitting in the chair. I end up in tears, getting up and walking. The jerk is seemingly pleased he gets to go home. After trekking to the gate, the check-in attendant warns me of the lengthy tunnel from the terminal to the plane while I confirm my wheelchair for arrival in Delhi. So, I decide to save my strength and I raise my hand for wheelchair assistance when it is announced. A girl comes over, looks at me, says “For you?” and then rolls her eyes and chuckles as if I am just lazy when I nod. I ask if there is a problem and she says “No.” But, clearly there is. I get in a semi-argument with her as she says in a thick Jamaican accent, “If I look mad, you sit down and if I smile you sit down.” I have no idea what her point is but I sit down and she pushes me to the plane. Bout number two of tears is now in a steady stream. Continental will get a letter from me…..and it’s not going to close with “Sincerely, a satisfied customer.”

On the plane, I experience my first instance of something I’ve been reading about in culture and tour books. Several on India have mentioned Indian people have no need for privacy because their culture is about togetherness. I realize this is a generalization and my time on the plane only represents a snippet of what I'm to learn so far (even if it is that you can't always believe what you read). As I stand in line for the restroom, they are so close, their clothing is brushing up against me. One by one, the flight attendants approach me after they overhear I am staying two months in Delhi. “You are so brave,” they say cautiously. “It’s a rough city.” The other Indian passengers in line with me are hovering, closing in our conversation. They don’t say a word; they just stare. No one has any hint of rudeness. They all smile at me. They are just doing what they normally do.

They guard the restroom while in line. As soon as it unlocks, they are pressed up against the accordion style door instead of waiting to give the person exiting the bathroom space. They slide in without so much as slowing down their graceful beeline through the door.

One of the flight attendants is overly concerned about my risk for blood clots because of the issues I have with my legs. She asks politely if I mind telling her what kind of treatment I’m getting. I am more than proud to tell her it's embryonic stem cell treatments and she’s glued to me with curiosity. She tells me about her mother’s leg pain and how tonic water cured it. I giggle silently in my mind. Ahhh, if only tonic water really did the trick. But then I think….wait…did I try that? I panic for a few minutes wondering if I left an obvious stone unturned all these years. Tonic water is 75 cents and here I am on my way to a “rough city” for $30k. On the next beverage round, I ask for a glass. It does nothing. I still have shooting pains in my legs. I hate to say it because I’d be happy if anything worked, but to find a cure two hours into a 14-hour connecting flight would really piss me off.

The journey continues…..

The arrival to the airport was chaos. I am happy to report the wheelchair was ready for me with no judgement, although it was more unstable than my own legs, sporting a rickety wheel and missing a foot peg. I was whisked through security while we somehow temporarily lost my parents through customs. They have never been out of the country, which surprises even me. They are adventurous and so young at heart, but I watch them in anticipation to see how they will react to the sea of people fluttering around and insane taxi cab drivers I know all too well from traveling. The hospital sent a driver to pick us up. He brings another employee and two cars. They tell us we will go in one car and the luggage will go in the van (which is far less superior in size to what we see in the U.S.) This is one of those things you really have to stop and think about. My parents are definitely leery and to be quite honest, so am I. But, what are we to do with two small cars? My dad momentarily has a look of sheer fright in his eyes, like he will tie himself to his luggage to make sure it goes with us. I am being pushed in my wheelchair through an absolutely absurd number of cars parked in no particular order. Mom and dad are behind me with concerned faces, clenching their traveling neck pouches that hold all important documents. In a quick second, I spot a man’s leg become pegged under a moving car and the luggage from his cart fly off. There should be a sign that says: WELCOME TO DELHI – DON’T PAY ATTENTION AND YOU MIGHT LOSE A LIMB. I remember thinking this of Thailand years ago. The car stops and reverses slightly, the man’s leg is released and no one seems to care. He gathers his luggage from the dirt and limps away. Everyone is over it just that fast.

We finally decide we will part with our luggage and pray it meets us at our destination – the hospital. It does and we are glad we won’t have to be dubbed the idiots who knowingly let somebody steal our stuff in the middle of the night with a van.

The hospital staff greets us and while one girl takes down my information, they all huddle around her and watch. I noticed everyone here does things in groups. The wheelchair pusher at the airport had a posse. The taxi driver had his own gang, and since I’ve been at the hospital, the nurses have come up in a pair to check on me - and they bring the housekeeping man. The hospital is clean, and actually kinda fancy. My room is decorated in bold blues, has a plasma TV, personal internet access and other extras I definitely didn’t expect. The halls in the corridors are green marble. I have a million different lighting options although none of the switches correspond correctly to their bulbs. My shower confuses me as it has no basin. The toilet sits right next to it and the drain for the whole bathroom is on the floor. It reminds me of the kind outdoor beach shower you have to wear flip flops in (minus the akwardness of the pot). I question the nurses as to how the whole thing works and they are totally confused at my hesitance. I privately rename this combination they have the "shoilet" because it's a little bit of both sharing the same spot. They want to know what it’s like at my home. I don’t have the energy to explain it so I tell them that even if I wanted to, I couldn’t pee and wash my hair at the same time like they could. That is what makes mine different. I’m not sure if they get it, but they giggle and show me how to flush. Last time I tried, I turned on some extra spout that you are apparently supposed to fill buckets of water with for washing dishes. Why that is attached to the toilet, I can't comprehend at this point. So much to learn….

My parents are at a guesthouse a few blocks away where they will stay. Tomorrow they’ll be back when I meet the doctor. I’m eager for the meeting.

There are so many questions – when will my treatments start, what will the protocol be, and is the pollution in the city always as bad as if we were sitting amidst a roaring Malibu fire? My throat is sore already.

I saw my doctor in California a couple of days before I left and he wanted me to get an MRI of my spine. So, I’ll request that and go from there. I have lesions (scars) on my brain and we want to confirm I don’t have any on my spine.

When I left my doc on Friday, he still wouldn’t comment on the stem cells directly. But, he did say that he didn’t think antibiotics were going to be THE thing that got me well. I left with the confirmation I already had in my heart. I know this is the right thing. Tomorrow I’ll know more about what exactly this right thing entails.

Until then, I’ll hope the wailing dogs give it a rest and my parents have a quieter alley behind their hotel. God bless them for traveling so far, out of their country and their comfort zone to make sure I got here safe and sound. They amaze me more and more as I get older. The morning is soon approaching and if this bed feels as uncomfortable as it looks, it might come much too soon.

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About Amy B. Scher

A passionate author, pioneering patient, and sassy spirit with just enough sweetness to get me by, I live by my self-created motto: when life kicks your ass, kick back.Amy B. Scher's profile Amy B. Scher's blog