Dear Dan,
Well frankly I don’t have any. As everyone now knows we haven’t left our city in almost 7 years. But I did want to congratulate you on your award. You totally deserve it. I wish I could give you an award for your online services which you can see I freely take advantage of. You are a gift to our community.
Now here’s your tip. Many years ago I worked for a Taiwanese boss, Dr. Wu. He was a brilliant researcher and chemist, but his broken English was the pits. I remember his first day with our group; he wanted us all to go to lunch. So off we go, Dr. Wu and his 4 scientists. He starts telling us these stories about Taiwan. Something about men having a city wife and country wife; it was difficult to follow. Anyway, he then goes into this story about his mother-in-law and a trip they were on. He keeps saying it all happened at Mamo Kay. We’re like where? Again Mamo Kay. Now we are stumped. What is this guy talking about? I’m figuring it must be some place in Asia that I have never heard of, but he insists that we all must know about this place. Well finally after 10 minutes of a charade like game, we figured out that his trip was to Mammoth Cave in Kentucky.
Ok now I am worried. How am I going to work for this man when I can barely understand him? He had previously been the head of an R&D group, and I remember going to some of his presentations and being in a brain fog moments after he began speaking and now I’m working for him. Well within months, my English-wanese ability soured. I understood almost everything he said. I would tell myself, wow Dr. Wu is really coming around (although that seemed a little weird since he had been in the States for over 20 years). Anyway, a few months later, we went to a seminar where he was presenting. I thought it went very well. I understood it perfectly, followed along, and thought he did a fine job. When I got back to my desk my phone started ringing. People from the seminar were calling asking me what in the world had they just heard. It was then that I realized that Dr. Wu hadn’t been improving his English, but rather I was now fluent in English-wanese. This became the norm for the 5 years I worked for him. We fielded translation calls after every presentation he did.
So what’s the tip you ask? If on your trip you hear soemone say they visited Mamo Kay, they have been to Kentucky.
Hope you have a great time.
Dear Trish and all my other friends,
I do want to share with you my travel plans for Taiwan and tell you a bit about how I planned for it, what I am afraid of and how I plan to stay in touch with you.
In January I received an e-mail from Taiwan saying that I have been nominated to receive their "Fervent Love of Life" award. Ordinarily, I would never have thought of taking such an arduous trip, but given the nature of the award, how could I say no?
Of course, a trip like this poses many difficulties to those of us in the SCI world.
The first difficulty was expense. They offered to fly me and a companion (in this case my nurse), but I would need two rooms in the hotel as I am not that friendly with my nurse! They were happy to pay for the extra room. And of course I would need a room with a wheel in shower. No problem. And they had a van available to pick me up at the airport with a driver who is also a translator (I learned that only a small minority of Taiwanese also speak English).
But as many of you know the more difficult situation is the airplane. Because it is a 20 hour flight and I will not have my wheelchair on board (all wheelchairs going to baggage) this poses several problems. The largest is about circulation to my butt. I would hate to arrive on a wonderful adventure with skin breakdown. One shorter domestic flights, I have my nurse stand me up for about 90 seconds every couple of hours. But that wouldn't work on a 20 hour flight. Business class seats, however, go back nearly 180°. This helps for pressure relief and sleeping. I am also hoping it will help making sitting in one seat for 20 hours more bearable. I'll keep you posted on that! And of course business-class is much more expensive. Fortunately, my hosts understood this and were willing to pay for business class for me but not my nurse. So I will be alone.
But my biggest concern with flying -- always my biggest concern -- is how my wheelchair gets handled by the baggage handlers. When I first started flying 20 years ago, my wheelchair arrived broken about 50% of the time. I don't know if baggage handlers are advancing in their skills (unlikely) or if wheelchairs are more easily disassembled, but now my wheelchair arrived broken about 20% of the time. But in order to ensure that, both armrests, both foot plates and, most important, the joystick and power cord get removed and put a large bag and going to baggage with me. So the only thing the baggage handlers have to do is not push the chair when it is in gear or it will strip the gears. I am usually able to communicate this when I fly domestically, but I am pretty nervous about this as I am flying on Taiwanese air. So, knowing me, I won't take a deep breath until I am in my wheelchair at the airport in Taipei.
So those are my fears. Beyond that, I am terribly excited about meeting new people and new cultures. Learning about their psychology and families, tasting the food (I hear they have a restaurant that specializes in snakes. Disgusting, but I might have to try).
So I will be here on Tuesday the 26, but after that, I plan to make entries on this thread from Taiwan. I'll tell you about access, comfort and whether snakes taste like chicken!
Okay so here I am about five days before departure and all I have to do is pack. Well, that includes packing my medication, supplies, portable shower chair and stuff like that. Then, I leave from Cherry Hill to Newark Airport about 90 minutes away along with my two nurses.I have been told by EVA Airlines that they want me to check in two hours in advance and they want my wheelchair to be taken by the baggage handlers and check-in. So this means I get pushed around the airport for a couple of hours in one of their chairs. No big deal. Fortunately, my motorized wheelchair has many removable parts including the armrest with the joystick so that when I give them the wheelchair, there is no power source and very little they can break.I have been talking with the head of the Taiwanese consulate in New York (Winston Hu) who has been incredibly helpful. I told him about my wheelchair anxiety and he called the airline for me. whew.
Now as things get closer, I have a little anxiety about sitting in the same airline seat for over 20 hours. So I've downloaded one book and one movie onto my iPod, will be bringing my own book and computer. And between those things and the gifts of M&M (meditation and medication) I should be okay.
And then once I am in my working wheelchair in the Taipei airport the translator the wheelchair Van shows up, I am a happy boy and ready for little Danny's great adventure!
I will be bringing all of you with me in spirit, I really will.Please take care and I will do the same
Hope you had a successful commute to Taiwan. I am anxious to hear about your traveling adventure but most importantly about the award ceremony that you will be attending; a great honor to a very deserving man.
This week I started reading a book called The Tipping Point. It is actually the required summer reading book for the high school my son will be attending in the fall. I find the concept so interesting and it presents some things I have always known but just didn’t know they had names. One is the 80/20 rule. I think I have been trying to describe this rule in many of the posts I have written; I just didn’t know it was a rule. The rule is that 80% of the work in any situation is performed by 20% of the individuals. Unfortunately every pizza guy that rings my doorbell falls in the 80% group which does very little work. It is REALLY hard to find those 20%. Could this rule be the cause of 80% of my frustration? Hummm…..that brings me to the real premise of the book.
The notion that problems decline in some kind of steady progression isn’t always the case. In actuality, this decline may not be steady at all. The progression reaches a tipping point and at that very point the progression of the decline is exponential. The book gives some great examples, but it got me thinking about the roller coaster of emotions I feel as a caregiver. Much of the time I can fumble my way through this lifestyle on a somewhat even keel, but then on one given day, at one given moment, because of one given situation the tipping point happens. The decline isn’t a slow progression; it is a massive meltdown of biblical proportions.
On the flip side, the tipping point can work in the opposite way. The tipping point is the making of an epidemic or a craze that spreads like wild fire. I guess the real question I hope to discover in this book is how can we deliberately start and control positive epidemics of our own.
Dan, I am wondering if you have found the answer to this question. You have created your own positive epidemic that infects us all positively each Tuesday. Was this book required reading when you were in high school?
So don’t forget to let us know if it tastes like chicken. Hope you are having a great trip. Stay safe and have fun.
Yesterday was amazing. An interview in the lobby in the morning (photos attached) followed by a very large press conference attended by most of the time when these media, several politicians and one man who is one of the wealthiest people in Asia (he gave each of the recipients a little Mazel Tov gift of a Sony notebook).
After lunch, I was told I was being interviewed for a radio show in the lobby. And when I arrived, I saw a beautiful young woman with radio equipment who was a paraplegic. Before we started the interview she told me that she read letters to Sam while she was in the hospital. This was shortly after her father died. And as she read the book, she said she felt like her father was talking to her. We both cried in the lobby and held each other for a long time. And that was before the interview. It was very hard to say goodbye to her as we just wanted to hold one another.
Then the afternoon at an incredible museum where the CEO of the foundation purchased an ivory bracelet for me just to show how grateful she was for my presence.
Tomorrow we take a train to the central part of Taiwan where we go to a children's cancer hospital and a girls high school.
Friday, among other things, I do a book reading at one of the largest bookstores in Taiwan.
Saturday begins with a meeting with a magazine interview, then we have an audience with the president and concludes with having dinner in the tallest building in the world.
Sunday I give a talk to a high school with the Cardinal.
An amazing trip. But not without its difficulties. I think because my immune system has been so compromised, I developed a urinary tract infection. But then I woke up this morning with 101 fever. Fortunately, many of my friends were doctors so I was able to get through to them in the states and get guidance. Feeling much better now. But what complicates all of this is the folks in Taiwan are pretty nervous about the H1n1 flu as many of them wear masks and we get our temperatures taken every time we go into a public facility. I was afraid if they knew I had a fever I would either be taken to the hospital or isolated. So I just told them I wasn't feeling well, took a nap and I think the antibiotics kicked in.
I could say more, but I hear the spirits calling me for another nap!
Trish,
Gladwell has turned the great person vs. zeitgeist (historical timeframe) relative to trends, success and failure, greatness vs. obscurity into three books - The Tipping Point, Blink, and Outliers. I just finished reading Outliers and finally, in the last chapter, discovered the personal basis and biases of this particular book. He is talented in rekindling debates that have been philosophically argued for centuries. Where were these books when I explored these issues in post grad school!?! Enjoy!!!
Dan,
Glad to see and hear about your journey and that you are absorbing every moment of the adventure. Thanks for sharing.
As of tomorrow I will have been on this planet 63 years and lived as a quadriplegic 30 years. And now I return from the most amazing experience of my life. I have fallen in love with the land, the people, the attitude and the spirit. Their only wish was to make their guests feel welcome. And they did so with grace and with gifts. They did so in every possible way they could and the concept of inconvenience is probably an anathema to their culture.
In the category of Quad stuff:
1.Texas catheter leaked while I was on a 19 hour plane ride. Wet pants are not cool. So my nurse covered me with a blanket, reattached the catheter and showed dry paper inside of me and under me. Fortunately, the air on the plane was very dry and I was okay at the time we landed.
2. The aforementioned UTI (managed well with antibiotics)
3. A major awards ceremony at the Chiang Kai-shek Memorial Hall with hundreds of dignitaries in the audience. So here I am in the green room waiting to have my award presented by the deputy chairman of foreign affairs when I look down at my pant leg and sees that my leg bag has leaked all over my shoe! So there I am a few minutes later surrounded with important people and awards and making my acceptance speech thinking: "I wonder what they would think if they knew I just peed all over my foot!" Anyway, a relatively minor problem with the help of a hair dryer and a wonderful interpreter who just had the definition of her job expanded!
On Thursday we travel to the center of the country to speak with a very large Catholic girls high school. We were greeted like celebrities with banners and applause -- even a marching band. The other awardees entered before me to great applause, but when I entered they began to scream with excitement. Just imagine a country where a group of high school girls would be thrilled to say a 63-year-old author.
Many other things to report, but here's the highlight: on Friday morning we were at a homeless shelter knowing we had an audience with the president that afternoon. But while we were at lunch, I was informed by my interpreter that the head of the foundation wanted me to represent them to the president and I should prepare a five-minute speech! Thank God they didn't tell me the night before as I was so anxious I couldn't draw a deep breath. But then, a couple of hours later, there I was sitting next to the president of this wonderful country, a Harvard Law school graduate, who sat next to me and looked me in the eye as I told him stories of the wounding and the healing of the human spirit, the power of compassion and love and what happens when personal pain turns into service to others. He listened attentively and thanked me. And it was then I realized that all this was happening too little Danny Gottlieb from Atlantic City, the guy who peed on his foot yesterday.
I was both thrilled and cracked-up by your post (more on the cracked-up part in a different post). This sounds like it truly was an experience of a lifetime. I am so happy you had such a wonderful and meaningful time. Thanks for sharing it with us.
Glad you are back and Happy Birthday!
I have two separate posts to share. One is a follow-up about my friend/adoptive daughter in Taiwan and the other is about a very powerful encounter I had with a 15-year-old hearing-impaired girl. I'll post the latter separately.
I found out on the last day of my trip that amily couldn't come to say goodbye because she had a pretty bad pressure sore and was on her way to the hospital. You really must have been some kind of emotional adoption because I was so terribly upset and worried about the kind of care she may be getting there. So I did some research (they have good care and good access), but I am not clear about what is happening -- all I know is that she will have surgery. Dr. told her she needed a new cushion and I will be sending her one from here. So in the midst of my concern about amily, I arrive home after my 17 our flight to notice that I have a pressure area on my derrière. First one I have had in a decade and I am not a happy camper. Especially because I am leaving next week for Israel with my grandson -- a 12 hour flight. Turns out the pressure area is pretty minor and I will be okay but it has really affected my mood. I returned home from Taiwan promising myself to be more kind, and here I am being cranky, short tempered and judgmental. Fortunately, I am compassionate enough with myself to understand to what I am really feeling is quite fragile vulnerable.
And I also know that this situation is like wet pants -- doesn't last but may happen again.
And my second post about another friend from Taiwan.
Her real name is Yu-Chen, but everyone calls her yo-yo. I don't quite know what that means in Mandarin, but it seems like a perfect nickname for this 15-year-old girl with sparkling eyes, a perennial smile and all of the energy and enthusiasm you would expect from someone her age. Born with a severe hearing impairment, she was one of my fellow winners of the Fervent Love of Life award in Taiwan. Because of her hearing impairment, she didn't speak her first word till she was nearly 3 years old and despite powerful hearing aids and other interventions, still gets most of her information from reading lips.
As a child, she experienced many of the difficulties children with sensory impairment do. She spent many hours with difficult and time consuming therapies that interfere with her development of peer relationships. She also found school difficult until they were able to accommodate her differences. And of course things got worse with adolescence as she was often ostracized by the other girls.
But despite, or because, of these difficulties, she was an extraordinarily sensitive and compassionate young lady. When she was old enough, she volunteered a great deal of time being a mentor to autistic children. After a typhoon, she spent days rescuing abandoned animals and has continued to do so for the last two years. I found her energy and sensitivity to be magnetic and we became fast friends. The fact that we could not communicate directly with one another didn't seem to be that much of a problem. She knew some English, but between her speech impediment and her accent, I couldn't understand more than a few words here and there, so all of our communication was either through her mother or my interpreter.
One day her mother told me that Yo-Yo wanted to talk with me "about some feelings she had inside." My first reaction was how honored I was by her apparent trust. But I also wondered about how much pain she must have been in that she needed to talk to a psychologist who couldn't understand her language. It turns out that both were true. Later that afternoon we found a quiet place to talk and we were joined by Judy my 25 year old interpreter.
Children born with disabilities often do pretty well in childhood but begin to have emotional difficulty when they get into high school. Many kids have told me that this is a time in their lives when they just want to be like the other kids and they feel angry about their disability and confused about how to deal with it. This was the case with Yo-Yo as she told me she wanted to be closer to some of the girls in high school, but she was afraid to open her heart for fear they would make fun of her. She told me about her strong desire for more closeness with her friends and confusion about how to achieve that without getting hurt. And to make matters more confusing, she said she was physically attracted to someone and had no idea how to deal with those feelings. We talked a great deal about my experience with disability, and Judy talked about her experiences when she was in high school.
Because of a column I wrote about my encounter hearing impaired yo-yo (posted below), I had a live Web chat with two experts on the deaf and hard of hearing. http://www.philly.com/philly/blogs/drdangottlieb/
We talked quite a while about specifics for that group, and then we talked about alienation and the need to be with kindred spirits in order to find safety, self-esteem and even identity. When I talked about the experience of spinal cord injury being very similar, one of the experts called me a kindred spirit. Funny thing is I feel like a kindred spirit with that group. But I also feel that with any disability. That part is not surprising.
Several years ago I was waiting for a red light in Center City Philadelphia when a homeless man came up to the Van with a Styrofoam cup. Once he saw that I was handicapped and didn't have any free hands, he looked in my eyes and nodded at me and I did the same with him. It was almost as though he and I were acknowledging something about what we had in common. He and I have had many encounters since that first one and I have pulled over several times just to chat with him.So what do we all have in common, I wonder.Any thoughts?
When I arrived in Taiwan, I knew our group would have an audience with the president and I was very much looking forward to that. But during lunch before our meeting, I was informed that the head of the foundation wanted me to be the spokesperson so that I would be the only one in the room who would address the president directly and I had three to five minutes to do so! That was about two hours before and I don't think I was able to take a deep breath in that entire time span as I can recall being that scared.But when I was given the microphone, I told him about the wounding and healing of the human spirit. I talked about the power of compassion and love to help heal the wounds of alienation. And I told him about how pain can be used to promote understanding and compassion for the larger world. And when I was finished, he stood up and took my hand and thanked me.An amazing experience. An amazing country.
Those "friends" on the left were my interpreters Gina and Judy. I fell in love with both of them -- no surprise. I proposed marriage to both of them thinking that a 40 year age difference is not unreasonable. I'm still waiting for a response -- I figure if I proposed above, that doubles my chances of winding up being married to a beautiful young woman who can teach me Taiwanese!
