Delhi

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 wanted 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 ground. 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.

"Family Dinner"

Tonight was "Family Dinner" :). Every once in a while about ten or so of us get together and order take out and eat around a huge table in the Common Room. We ordered Chinese food and some Indian dishes too. It's always fun getting to sit around with everyone and feel at home by eating a meal together. We all get to know each other a little bit better and we always have some great laughs together. Bret, Marg, Derek, Corky, Mitesh, Vasant, Gabe, Matthew, my Mom, and I were all shoved into the Common Room eating a delicious Chinese meal. It was pretty funny because once all of us got our food we all went practically silent. We were all so happy and content with our meals. Once we had all finished eating Matthew asked a very interesting question. He asked, "On a scale of one to ten, how glad are you that you came to India to do this treatment?" We then went around the table answering with whatever number we believed. Generally you could say that it ranged from a 6 to a 10. That is about the standard range if you were to ask anyone who's been here I think. Asking this question changed the mood of the Family Dinner, but it was really interesting to hear every one's answers and reasons. We talked about how different expectations are for spinal cord injuries than diseases. The main thing anyone with a disease comes here with is to stop the progression, anything else beyond that is just icing on the cake. With spinal cord injuries they hope for something, anything, to come back. We had about an hour or so long discussion about everything and it was really eye opening to see how similar but different we all are. It was really nice because all of us knew that whatever we said, we knew that someone else in the room would understand it better than someone back home. We all agreed on the fact that this trip has been bittersweet. Leaving home was really hard, but knowing you are going to try something to hopefully get better made it worth it. Now that we are here it's going to be really hard to leave because we have met so many amazing people, who can somewhat understand what you are going through and we want more treatment rather than giving it a break and going home. We want more now. Hopefully we get to have another dinner again next weekend. :)

Celebration

Last week my physio gave me permission to start using my calipers outside of physio. My only rule was that they had to be locked and I had to have someone next to me to catch me if I were to fall. My Mom and I wanted to celebrate the fact that I was now allowed to start walking "on my own." We asked Gabe and Matthew if they wanted to come celebrate with us and get ice cream over at Green Park. Green Park is about a five minute walk from the hospital. I put my calipers on while we were in our room and got in my wheelchair and my Mom wheeled me there. She didn't want me walking in the street because drivers are pretty reckless here. When we got to the front of the ice cream store she let me get out of my chair and walk up the couple steps and into the store. It was so exciting because I could finally actually see the ice cream flavors rather than just the signs. I picked out the ice cream I wanted, a chocolate moo, and we went over a sat down. We were with Gabe and Matthew and we were all kind of in shock at how I was actually walking around. My Mom gave me permission to walk home from the store. I have never pushed a wheelchair before, and it was probably the weirdest feeling ever pushing my own chair home. I'm a pretty slow walker as you would imagine, so our five minute walk was about fifteen minutes. It was well worth it though! The best part of all of it was when we got back I ended up pushing Gabe with my wheelchair, like a train, pretty fast. We definitely weren't in very good control and hit the walls and plants a couple times. As I was pushing him we went passed Dr. Sudeep's office and he was very confused at first because he had only seen Gabe going by faster than usual and the front of my wheelchair with no one in it. He then saw that I was pushing my wheelchair and started laughing. Dr. Sudeep was so excited and happy to see me walking and pushing Gabe. It gave me enough confidence to know that when I get home I will be able to do more on my own.

Yes I did manage to spill ice cream all over my shirt, as always.

Busy, Busy, Busy

Today has been a super busy day! This is the first time I have actually gotten to sit down and turn on the computer all day. We woke up about 9:20 this morning and got ready for physio at 10. Physio was usual time, about 10 to 10:50. Dr. Shroff and Dr. Ashish made there rounds and my Mom asked them a couple questions. They then realized that I had gone from being an A student to dropping out of school and they couldn't believe it. The whole entire trip they have been focused on my sensory and walking kind of forgetting about how impacted my brain is. Today it clicked. Their goal has always been to get me to walk and feel, and my cognitive problems were put in the back seat. Once they realized how bad it truly was they wanted to really help with it. I am now going to start going to "cognitive rehab" as Gabe calls it. Everyday now a doctor is going to come up to our room for 40 minutes and help me with memory, writing, etc. After meeting with the cognitive doctor I came back up to my room and got ready to go do a procedure. I did the Deep Spinal Muscle procedure in the back of my neck. Originally they were going to do it in my lumbar area to make my legs stronger, but once they found out about my brain issues he changed it to my neck. I asked him when I was going into the room why the neck, and he said because it's closer to your brain, simple as that. Dr. Ashish was really excited when he found out how smart I am, and asked me if I would write up what feeling nothing feels like (if that makes sense). He wants me to write down what it feels like to touch a pillow or hold a drink, etc. Once he was done giving the procedure I was brought back down to my room and was told to lie down in bed for an hour. During that hour there was a Mother and Daughter from Australia and the Daughter has Lyme's Disease they think. She wanted to find out more about Nu Tech and if it is worth it. We told her it's worth every penny. About five minutes before my afternoon physio I was allowed to get up from my procedure. I was then off to physio to work my butt off yet again. Now I am done with physio took a little break to write this post. Gabe just came over and told me a couple people are going down to play cricket so I'm off to go play. I'll write more later!