Saturday, October 31, 2009

Green Park

We live in an area called Green Park. It is such a small area compared to the rest of Delhi. It takes us about 20 minutes to get to the heart of the city from the hospital depending upon the time of day with traffic. I have really liked living in Green Park. The hospital is on a very busy street but you have access to a shopping area (two blocks long with stores on just one side) that is about a five minute walk. You can walk to Deer Park which is again about ten minutes from here. This park is quiet (the first place I could actually hear birds chirping), green with plants and trees - no grass, and has a fenced in section of deer - they look like bambi with white dots, but many have antlers with their velvet still on. You can also walk to another area about ten minutes away that has a quaint feel to it with cobble stones and then end up at some spectacular ruins.

The hospital has an outdoor lift that takes patients out of the building. Once outside there is a small space for parking in front of the hospital. If we want to play cricket we have figured out how to get most of the cars moved out of our way. Green Park is located close to many other hospitals and laboratories. Just walking for five minutes to Green Park to shop is an experience in itself every single day. The vehicles drive on the opposite side of the road than in America. It is so hard to remember that when you are walking. You have to cross the street at two places to get on the side of the shops. You would think that is a breeze but in fact it is a challenge. The first few times you are scared, but after that you just become determined and hold your ground for the opportunity to just go and expect them to stop or swerve. You have to feel like you are a vehicle yourself to create the space and have a command of presence for them to believe you are NOT going to move. It is no problem now because I get it, but those first few steps were a challenge in courage.

On our walk to Green Park you see bicycles used for transporting everything under the sun - regular bikes and ones that pull a wooden small trailer. They transport blankets, trash, furniture, laundry, hospital supplies on a regular bike (three cases of 1 liter bottles of water, boxed milk and other supplies), pipes, bricks, sticks, wash machines, brooms, etc. You see women in their beautiful bright saris doing manual labor carrying bricks, grain, sand, groceries on their heads, or raking rocks and digging trenches. The saris are beautiful and look like splashes of butterflies along the brown roads. There is a man on one corner that irons clothes (coal irons) on the street under a tarp and another woman in the street next to the shops that does the same. There is a man that gives men a razor shave outside in front of a mirror tacked to a fence. There are several people that set up on the street to make food out of one bowl and coal burner.

The shops along that strip really can provide anything you need. They are about 20 feet by 40 feet with an aisle of merchandise in the middle. You can barely walk around and pick out what you want inside. The places are stuffed with merchandise and some times you need to ask the grocery "boys" (really men) to find what you want hidden away. Everyone is very helpful. There is an amazing amount of American food here just in Green Park if you look hard enough. Not your favorites or comfort food necessarily but many, many familiar labels. Everything is in English and they write in English, but Hindi is the language most speak. You can tell who has been educated because they speak perfect English. Some of the children talk to you and are so proud that they can converse with you in English. Education is very, very important and taken seriously. You can see the pride in the children's' faces when they realize they can speak to someone white. There is a toy store, 7 little grocery stores, three salons, two magazine stores, two health stores, several phone stores, a camera shop, two restaurants and two coffee shops - all of them very small stores. The only difficulty with the area is that they are not accessible. You need several people to help lift Monica up onto the area (18" curbs and steps) and then the pavement is all cracked. We do it, but it's just not easy. She cannot fit into any store either. It's not fun being left outside while I go in to shop for groceries or plastic containers at the toy store. I go now by myself unless I bribe her with ice cream and then she will make the trip.

Actually for the first time, I told her I'd get her ice cream if she wore her braces to get up the steps and see the ice cream to pick out. I pushed her in the chair and she stood up and moved straight legged in the calipers up the huge curb and stairs and then she waddled up three more stairs to be in the shop and look at the ice cream. She was mad as a hornet but did it. Bribery works wonders. She is NOT comfortable in her calipers unless she is in physio. She looks like she would be but without them her legs do not support her yet at all. Her confidence level with the braces hasn't caught up with what she is capable of doing. Her knees still don't support, but that should come in time. The rest of her body is remarkably strong.

I cannot begin to understand psychologically how difficult it must be, because you cannot feel anything, to just put yourself out there with confidence. She is incredibly stubborn and fearless which is why she is still alive. Monica continues to amaze me everyday with her spirit, joyfulness and the willingness to rise up to any occasion and try everything. She never takes advantage of her situation and wants to get the absolute most out of every day!

Monica is helping me put together a slide show of Green Park. It should be up in a couple of days.


To get perspective of where we are living you need to understand Delhi a little better. The city is one of the oldest continually inhabited cities in the world with a history dating back to 1,000 BC. One of the earliest structures that exists is the 1,600 year old Iron Pillar at Qutb Minar (at the time we saw this we couldn't figure out why everyone was so excited to see a pole! The pole also has never rusted.). There is Very Old Delhi, Old Delhi, and New Delhi. The New Delhi was designed to house the British administration in 1931. There are close to 800 politicians in Delhi when Parliament is in session and India is the world's largest democracy. Delhi is the largest city in India with a population approaching 22 million. The country has over one billion people living in it.

A quarter of the world's destitute live in India. Over 380 million Indians live below the poverty line, subsisting on less than US1$ a day and almost 89% of the total population live on under US$2 a day. Conversely, as India's economy grows millionaires are being created at a record rate and there are now over 100,000. This is a 20% increase over last year. Bridging the gap between the 'two' India's is perhaps the greatest challenge facing the country today - and for a visitor to come to terms with. There is a rapidly developing middle class, but you have to be sensitive to the fact that wages are low and even a middle-class family is likely living on less than US$1,000 a month.

Just watching how the hospital operates I assume there are extremes in what wages are being paid to people. In general I know that the sisters (nurses) were brought in from another state to work here and are living in a hostel together, the ward boys are hard laborers and come from the mountains and do not have hot water where they live, and then our doctors and managers have drivers to take them around.
The influences of Hinduism and the tradition of the caste system have created a culture that emphasizes established hierarchical relationships. Indians are always conscious of social order and their status relative to other people, be they family, friends, or strangers. All relationships involve hierarchies. In schools, teachers are viewed as the source of all knowledge. The patriarch, usually the father, is considered the leader of the family. The boss is seen as the source of ultimate responsibility in business.

I can see this applied in my little time observing people in India. Dr. Shroff is absolutely the boss and takes precedence over everything. When she asks for something it is done immediately. People take her phone calls when they are in a meeting. Dr. Sudeep has a phone dedicated to just her. He has it with him at all times and will answer it always immediately no matter what is going on. Dr. Shroff and Dr. Ashish realized on Thursday that Monica was having cognitive issues and was an A+ student and in advanced classes before she dropped out of school (they have been very focused on getting her to walk and trying to get any type of sensory back and didn't fully realize how impacted her quality of life is with not going to school), that Dr. Shroff walked away from us, went into talk to the director of the children's department and she came back and told us that Monica would be starting that day meeting with him from 12:00pm to 12:40pm everyday. During his evaluation of Monica he answered his phone (of course I thought he was extremely rude, as I have every time someone answers their phone in front of me mid-conversation) and started talking to Dr. Shroff. After he evaluated Monica (he stated that she was extremely intelligent and has a superb working memory (short term memory), but she has an information processing deficit. He now not only sees her alone daily, but is dedicating extra time to her throughout the day and asked her to come to his department whenever she has free time.

I continue to be amazed at the support system provided to us if the doctor believes we need additional support. They will provide you the resources if they believe your body needs them - never before. They really pay attention to what the patient's body is saying and what they observe collectively. They scientifically make their decisions and are constantly weighing the trade offs. I wanted more occupational therapy for Monica and couldn't understand why I couldn't hire our therapist outside the hospital time. Well, they just didn't believe that Monica needed more than two days a week. There was not enough proof that it was worth the investment. It is important and critical to do, but not everyday. I love that they are very clear cut in priorities. It is such a pleasure working with people that are decisive and invested in the outcome - my girl's quality of life!

The Garden of Five Senses

Marg had heard about this garden from a previous patient and they spoke highly of it and she w
anted to check it out. She invited anyone who wanted to come with. My Mom wanted to go and I decided it'd be nice to get out of the hospital for a little bit. The irony of going to the Garden of Five Senses is the fact I am missing three senses and the other two kind of struggle. Marg, Bret, my Mom, and I all joked about how funny it was that I was actually going to go. We started coming up with ideas like well of the five paths am I only allowed to take two of them or can I pay a third of the price because I don't have all the senses to experience it? On a map the place looks pretty easy to get to, but of course no one knew how to get there. We were trying to describe it and our taxi guy was asking everyone he could find to see if they knew where it was. Finally we decided we have to try and if we don't make it there we will hopefully end up some other interesting place. The taxi driver pulled over three times to ask someone if they knew how to get there, and by the time we finally reached the place I understood how difficult it was to get to and how to map doesn't say that well where it is with all the construction they are doing. It took us about a half hour to get there. As soon as we got there we started noticing how funny some of the signs are. Bret and I had a good laugh about the "Please maintain decency" sign. He decided we needed a picture in front of it, so we took our picture in front of it with the perfect face. We all got a very good laugh about that one. The garden itself was spectacular. It is 20 acres and it has winding paths, it's a pretty romantic place you could tell because there were A LOT of couples there. Oh well we still had fun looking at everything. There were pretty steep hills to get everywhere, but there were ramps so it was all handicap accessible. After going through the garden we were hungry so we stopped at a restaurant that was at the entrance. The restaurant was called Fio and it had only opened about two weeks ago. Fio was gorgeous and the serving sizes were fairly decent. It was an upscale place though so it was a little more on the pricey side, not too bad though. The biggest joke was that they couldn't figure out how to split a bill. It took about six people and over a half hour to get our bill, it was pretty ridiculous. It was a fun, relaxing day, and it was nice to get to know Bret and Marg a little bit better.

These two pictures are of Bret and I in front of our "Please Maintain Decency" sign.

Room 204

I realized today that know one really knows about where we are living and what our room looks like. First we live in a 20 bed hospital. It originally was a hotel and has beautiful marble in the lobby, stairs and hallways. We live in room 204 and look out the front windows of the hospital on the busy street. We took a lot of time when we first arrived trying to make our room look as comfortable as possible and not look like a hospital room. That was a huge priority for me. I wanted it to have a local Indian flavor to it along with the creature comforts that make life a little easier.

Our room is the size of a dorm room - probably 15' by 20'. We have Monica's room, my room, a kitchen, social area, medicine area, changing area and therapy area. Monica's room is the hospital bed that has a hand crank to move the backrest up and down (no electric comforts). We bought her a quilt that has a beautiful bright cheerful elephant pattern in between two muslin pieces of cotton. She loves it. She has five stuffed animals in her bed along with her favorite pillow from home. We moved her bed against the window which runs the length of the room. The window has a sill that she has put all of her everyday items and nick knacks on. There is a night stand next to her bed
that plays her iPod and there is a clock that we brought from home. She also has a hospital bedside table (our kitchen table) that she uses for her computer, to do cognitive therapy and occupational therapy exercises, to eat meals off of and for medicine. Under her bed is her suitcase with all of her clothes for our stay that she pulls out whenever she needs to change. We truly are living out of our suitcases. There is not ONE drawer in the whole room or bathroom. The other two suitcases under her bed are the carry on luggage we brought FILLED with medicine. I pull those out when I need to refill medicine containers.

My room has a little wire rack, that was supposed to be for the bathroom, I use next to my foam fold out bed. It is a chair when not the bed, but I have to have three little pillows on it under my legs or I slip right off the chair onto the gro
und. There has been some laughter with that graceful move. Right now I am typing on the chair and my knees are actually higher than my chest sitting! My bed is pretty funny too. I have to have the bottom of the bed flipped under so Monica can use her chair to get to the bathroom. I feel like I sleep in a U shaped position with my feet always higher than my head. If my bed is flat then there is not enough space for her to back up into the bathroom with the wheelchair. (Our choice because I could arrange the room differently.) I am right next to the free standing closet which has full length mirrored doors. I wake up looking at myself - it is never a pretty sight to see yourself so clearly before you get out of bed. Next to the closet I made a table out of six boxes and covered it in a shawl. We use this as our medicine table and next to it I put her "legs" that I carry in a bag (her calipers and shoes).

I now know you all will be truly jealous of our kitchen. Just imagine the things you can create here! We have a 18" by 30" counter. A glass shelf on top of that which is 12" by 24". We have a toaster and a 2 cup kettle. A dorm refrigerator that we have filled with just water, jam, 6 eggs (I bought a skillet), and boxed milk. There is a larger wire rack filled with food and I purchased a couple of bags to also put snacks in.

Our bathroom has a beautiful granite countertop and a sink that I use to do the dishes in. Next to the sink is what we all call the showlet. There is a toilet and then the shower is open next to it. We have to squeegee the whole floor after every shower. We do have a plastic chair, which we use mainly outside in America, that
came with the room and we use it in the shower for Monica to sit in. If we have company I wipe it down and bring it in the room - some one visited us recently to ask questions about our experience here and they never knew they were sitting on our shower chair! They do provide a shower / commode chair that we gave back to them.

The room works and we get along great. If we didn't it would be a problem. I sleep with ear plugs because she needs to go to sleep with the music on and the headphones do not stay on her. Because she sleeps more (yippee skippy for the stem cells!) our bed time is midnight. When we went to Germany our bedtime was never the same time and often we were playing cards at 2:30am till I passed out. This has been such a better trip for me because she sleeps more. I am beyond thrilled. The only thing about our whole room situation I forgot to mention is the wheelchair. It is in the middle of the room all the time. On our next trip hopefully we will come WITHOUT the chair! I'll write more about where we are living in the next blog. We love and miss you all!

Occupational Therapy

About two and a half weeks ago I started doing occupational therapy with Harsha. Dr. Shroff thought it would be a good idea to start retraining my brain as to what things feel like. For example when Harsha rubs a cotton ball along my arm I think about how cotton used to feel and how it is soft and a nice feeling, but when she rubs the rough side of a sponge on my arm I think about how it is hard and not pleasant. Harsha's goal with me is to try and get my feeling back and she works on that by doing various deep pressure exercises, textile exercises, movement exercises, etc. I see her about a half hour twice a week. We haven't set confirmed days or times yet, but it's not like we have any other plans. Today in therapy we did about seven or eight different things. We worked on deep pressure, she would push my fingers together and push my shoulders down, etc. We also worked on movement by me bouncing up and down on a ball, moving a board back and forth and rolling putty into a ball. Since we are also trying to get smell back we are doing an aroma therapy by using an orange scent right now. A few new exercises came up today, finger painting, being wrapped up in a bed sheet like a burrito and getting a ball rolled over me, and trying to differentiate between hot and cold water. Hopefully therapy will help me a little bit, and I will be able to continue it back home. I think it might be more useful when I can feel again rather than now because when I feel again I will have to retrain my brain as to what everything is. It's up to the doctor's though and I will give each thing they through at me 110% and just hope it does something.

The pictures above are from today, they are me being rolled up into a burrito with Harsha applying pressure with a ball, and my finger painting.