Meeting a Dragon

Quote

-Written by MightyKuen        -Edited by Sandra M

For 16 years now, I have embraced life as a quadriplegic. I often felt like I needed to be an armored knight, and my courage and determination is my armor to protect me from possible prejudice, inaccessibility, and frustrations.  These are the little “demons” I fight in life.

So where did I get the idea of wanting to face a dragon? It all started long long time ago in a land far far away… actually, it was about 6 years ago and in China… my mom told me of a heart-wrenching tale. While my parents were visiting China they encountered a person, much like myself, but no wheelchair, no support and sat on a board with tiny little wheels.  It brought tears to their eyes.  This made me feel sad, and at the same time how lucky to be living in a supportive community and surrounded by open minded and giving people.  After doing some research, I found that the Chinese government has already started making changes, and these changes were accelerated after the Beijing Paralympics.  However, due to the sheer number of registered people with disability (90 million and counting), people are not able to enjoy much of these changes due to a few key factors. Rural communities face the greatest challenges, sometimes they lack the infrastructures necessary to relay information, plus the lack of education affects the government’s effort to convey information, that they are making changes in the community. The second reason is the mindset of people, low self-esteem, and lack of positive outlook. From that point on, I felt a strong urge to help my fellow kinsmen, by using my experiences in Canada, to empower them. Show people there is hope and possibility for their own future.  And in order to do this, I must face a Chinese dragon.

I worked hard to prepare myself.  I started with attending The Steadward Center for Personal Achievement at the University of Alberta to help with strengthening my muscles.  I visited a sports injury doctor named Dr. Gregg to deal with injuries from a fall that I had the previous year.  Next, I looked for training grounds.  I trained on a daily basis on different hills in Edmonton, ramps in builds, in a studio and home for cardio to compliment my strength training.  And finally, to relax and get the knots out of my muscle at the Bethune Medical Center for acupuncture, massage, and cupping.  I did all these preparations between surgeries, doctor visits and frequent autonomic dysreflexia attacks.  People kept asking me “Aren’t you afraid?” “You are sick, why don’t you rest?” “You are injured, why don’t you cancel the event?” and my response is simple: “I only give myself reasons to move forward and never excuses to stop.” After many blisters, modified techniques, positive self-talk and planning out my travel path… at last, I was ready to meet my “dragon” in real life and I headed to China.

 

September 26th started with a loud crash, lighting and rain storm in the early morning, and I didn’t sleep well the night before due to health issues. My friends were worried and asked me if I wanted to cancel the event, but I held out hope that the weather would clear up, and I would feel better soon. Around 6 am, suddenly the rain went from pouring to just a sprinkle, but still, I held out hope to complete the journey, within hours, I was on my way with family and friends heading towards my dragon.  As the bus slowly moved us through the busy morning traffic towards my sleeping dragon in the mountains, I was sharpening my swords and putting on my armor in my mind to mentally prepared for the ultimate battle.

The rain had stopped as the bus pulled into the parking area, I could see the shadow of the “dragon” wrapping around the mountaintop.  In order to ensure the success of my journey, my boyfriend and cousins became my knight and shiny armors took on the responsibility of pushing me about 2 KM on a nicely paved road all the way up to the entrance to the “dragon’s” cave.   With my family and friends supporting me, I felt an overwhelming amount of strength surging through my body. Then I saw the stone plaque which sparked my adrenaline, on it carved 八达岭长城 (Ba Da Ling Great Wall).   Yes, you might have guessed it by now, my dragon is the Great Wall of China, and I will be the first quadriplegic in the world to wheel up it.  The idea was inspired by my hero Rick Hasen, a Paralympian who was also a fellow Canadian that wheeled on the Great Wall of China exactly 30 years ago.  He wheeled around the world in 2 years, 2 months and 2 days, his effort forever changed the lives of people with disabilities, in treatment, care, rehabilitation and outlook on life.  His journey of wheeling on the Great Wall shocked all of China, the world and empowered millions of persons. It is his effort 30 years later that gave me the idea face the dragon.

I was ushered up the newly built wheelchair accessible ramp towards the wall which was built during the 2008 Beijing Olympics.  My friends whispered words of encouragements as we moved closer to my wheelchair entrance.  Before I knew it, we were only 50 meters to my starting point, and 5 min to my battlefield. Millions of butterflies started to fly around in my stomach, thousands of bees start to buzz in my mind… I am getting excited to meet my “dragon”.

I entered the gate with my friends, helped up a 30 degree, unevenly placed stones with big gaps, narrow ramp to the gun tower; popped wheely up one big step to go inside a very narrow arched doorway then backed down one small step to exit the gun tower (these stone doorways width is only about 30 inches); now we had to ask a few strong bystanders to lift me up about 8 stone steps before I am officially on the wall. At last, I am staring into the eyes of the “dragon” and have reached my battlefield.

      

Now I start the preparations to ride the “Dragon”. I had twisted my back due to a fall in 2015, so each uphill push feels like a sharp knife stabbed deep inside my spine.  The same fall had also sprained my wrist.  These injuries had hindered my ability to fully face my dragon but I was stubborn and I took about 30 min to actually strap on real life armors to ensure my victory. A few arm stretches and warm-ups, with butterflies in my stomach ready to explode, I was ready to ride.

 

The Great Wall of China is nothing like how I pictured. It is composed of mostly stairs which is definitely not wheelchair accessible, the short pathway that had no stairs are very difficult to navigate in a wheelchair because it’s much like the scales on a dragon.  The stones on the wall are very worn from millions of visitors every year but the cement holding them together were not, therefore I must pop-a-wheelie with every push.  Good thing I was prepared for such case and brought with me a Freewheel that my friend Dan lend me.  Because the wall was constructed by human power so the path is not evenly built, which I had to compensate by constantly pushing harder on one side just to keep myself balanced and avoid hitting the side of the wall.  Every 100 meters or so, a 1-2 inch “speed bump” was built on the path, which made it very difficult for me to get over, I had to get family and friends to assist me.  And finally, aside from the high altitude, smog and thousands of people simply walk in front of your path, the most difficult challenge I was faced is the incline in the path.  The path I had chosen had an incline ranged from 10 to 20 degrees.  Normally this incline would not be too much of a problem, however, when all of the elements above are combined, this path becomes almost impossible.  Well, there was no time to waste, my adrenaline is pumping and I was ready to ride this “dragon”.

To say the climb was very difficult is an understatement.  I had a very rough start. Due to all the elements mentioned above: I kept pushing myself into the wall due to the uneven surface; I was over spending my energy pushing because of the bumpy cement every few inches in front of me; The rain the night before had made the pathway very slippery.   The only thing that was on my side that day was the temperature, the rain had lowered the temperature to a tolerable degree.  Since I do not sweat from heat as a quadriplegic, it was a blessing to be wheeling the wall in 15 degrees’ weather.    After about 5 mins I realized that I needed to change the strategy because I could not keep this pace much longer.  I reassessed the situation, took a short break to stretch, and started my climb again with renewed energy.  Each push forward used to feel like lifting a 100 pound of weight on an empty stomach, now I push by shifting my weight backward, pop my casters and the freewheel upward to have the wheels over the cement, I use my whole body weight to assist my arms and shoulder to push forward.  This appeared to be working, after shouting encouragement to myself with every push, I found my rhythm, I was once again on my way up the “dragon scales” toward my final destination.

The climb was surprisingly quiet; I guess the bystanders weren’t so sure what I was doing as they have not seen anyone with a disability ever dared to climb a “dragon” before.   “Ah!!! push!!!” I heard myself screaming. Gradually, as people got used to the idea, I heard more cheering’s and positive encouragements uttered.  My boyfriend rushed to my side often to check up on me; enquired if I needed water, to take a break, to remind me to rest. But I was so caught up in the excitement and adrenaline, I pushed on.  I did stop 2 times to pour water on my head because I was overheated as well as one time to stretch my arms.  The goal was within my reach, and I did not want to waste any time to get there.  However, fatigue hit me hard with still 100 more meters to go, but I did not let anyone know. Instead, I started counting each of my pushes out loud.  “1! 2! 3! 3! 4! ….” until I hit 25, I would pause, drinking a sip of water, poured water on my head to cool off and counted my next 25 pushes.  This is much like the techniques I learned from a personal empowerment training that I took at the Pacific Institute.  Achieving success is about making 2 types of goals: long term goals like wheeling on the great wall of China and short term goals like pushing 25 pushes to move ahead.  Counting loudly of my pushes to encourage myself, soon the bystanders had also caught on.  During my last 25 pushes towards my goal, with my father standing and waiting for me at the finish line, everyone was counting with me loudly and clapping to cheer me on.  I suddenly got a surge of energy going through my body and moved me forward with amazing speed.  At the end, I completed my goal, achieved the hardest thing that I’ve ever done in life, faced my “dragon” in 27 minutes, 20 minutes shorter than all of my previous times during training.  I can summarize my experience use one single word— awesome.

Rick Hansen’s wheel around the world in an effort to bring about disability awareness 30 years ago which enabled me to completed my quest to face my “Dragon” today.  I hope my effort will help bring changes in the lives of the current generations of persons with disabilities.  You’ve journeyed with me on my quest to meet my “dragon” and the Great Wall of China, you have experienced with me the triumph, tribulations, heartaches, pain and how to overcome them.  Life is full of little “demons” … in order to succeed, do not give yourself excuses to give up, only give yourself reasons to move forward.  Good luck on achieving your dreams and see you on your next adventure.

Wheel’n Asia (part 1)

琨游中国 1

Having been suffering from severe depression and ongoing health issues from my surgeries, I felt like my world has turned upside down and mixed in a blender… rather than take pills and numb my mind, instead, I chose a different path… I chose the road.

 

What is it like to travel in a wheelchair around China? Some people may fear the answer but the truth is it is quite interesting. China is a fascinating country and a country that is advancing when it comes to accessibility. I want you to test this theory, I want you to wheel in China I find out what interesting adventure I may find myself in.

 

I landed in Shanghai after a 14-hour plane ride. My body may be exhausted from the trip, my health may have failed me but my mind is racing with excitement as my adventure is about to begin. Every adventure is not without his hick ups, such as how my adventure started. After getting out of the airport it took some time to find a hotel that would accept me, my wheelchair as well as my passport. Next comes to getting a ride to the Hotel, which we quickly found out that taxi drivers are not very disability friendly as they drove us in circles to get our hotel. After that incident, we exclusively call DiDi car service (滴滴出行) using a phone app. Most people may not know this, but this car company holds his driver to a higher standard and they do not often discriminate against people with disabilities getting rides from them. Now everything is settled, my adventures can officially begin.
 
Shanghai is my first stop. We headed out the very next day to visit the famous landmark call the Oriental Pearl TV Tower. We visited the riverside, only needed to wheel about 1 km or so to find a perfectly built wheelchair accessible ramp which would allow me to get to the pier. The site is breathtaking. The river effectively separates the two thriving worlds in Shanghai.  We have one side, the building took after the traditional design of Chinese style buildings like the King’s palace which housed over 30 banks from China and around the world.  Across the river where the famous landmark is located, are filled with the grandest modern designed mega structures of various trillion dollar companies.  One can really feel the “war” between the tradition of the Chinese culture and the thirst for modern advancement.
 
Accessibility around the river is very well designed.  Every 1-2 kilometers of so there will be a ramp, and the ramp is built to the disability code of Canadian standard.  The platform is very smooth for a wheelchair as well as for people with visual impairment.  The streets surrounding the river is also fairly accessible, except for about 90% of the shops, they all have at least one step.  Some of the bigger stores or banks do have portable ramps hidden, you just have to find a way to ask.  Or have the alternative solution, get a few helpful people to lift you in.
 
I also visited the Madame Tussauds wax museum in Shanghai, we have to travel about an extra kilometer or two to find the entrance and it was a very interesting experience to be surrounded by famous stars from the Asia and Hollywood. I definitely took way too many selfies.
Oh, everywhere you go or travel to, the most important thing is food… open your mind, open your mouth, don’t think… just bite.  Yummy!
Shanghai is so much fun for a wheeler!

 

Choo choo, I’m off on the super train to the next city, it’s fast, cheap, reliable… and best of all,  accessible (with a little help).

Thrifty Traveler, Journey of Trying Something New, SCI Style part. 3

Edited by: Chris Bernard

New York! New York! What a wonderful land … I sang this song over and over again as I planned my first vacation after my accident 10 years prior. Thanks to my friends Amy and Dave getting married in New York I finally had the opportunity to take the leap of vacationing far, far away and without the security net of my family being nearby.
As a person with a high-level spinal cord injury, with all the needs of equipment, transportation, caregiver and accessibility in a foreign land, I knew this trip had to be thought out carefully and planned out perfectly. This was also my chance to show my family and friends that I can be independent.

Vacation Planning
I started planning in September of 2011 for my friend’s wedding in April of 2012. I created a list for my perfect vacation in New York as if I was still the old me, from before my accident; then I added all that I require now as the new spinal cord injured me, such as bringing supplies, an aide, commode, etc. I then looked at my bank account and said, “Uh oh!”
Still determined to do this on my own, I started to cross items off my list to make things work …. After I crossed off more than half of the list, seeing the black smudges all over the pages, my mood was as black as the ink and it seemed like my first trip to prove my independence was looking as gloomy as the dark sky before a storm.

After a few days of struggling with the idea of cancelling the vacation, I came up with a bright idea … I would combine the wishes of the old me with the reality of the new me and have my vacation, thriftily! Determined and eager, I started planning again for my now newly-revised-perfect vacation.

Thrift Planning
After determining my wishes and needs, I started to look at cost. My bank account did not like me very much after I figured out how much the trip would cost with traveling at a decent time and good hotel, trying new food and sightseeing for my aide and me. That’s when the Chinese/thrifty side of me came out like a superhero to save the day. She started help me to figure out the thrifty way to make my dream vacation come true. I started saving for this trip on Sept. 18th and became one of the cheapest Chinese people alive.

Flight
I was watching for seat sales with laser vision and after 3 months, I managed to purchase 2 tickets to New York for $300 less per person, free transport of medical bags/equipment we also packed carry-on backpacks …. The only catch was, the flight was at 6:30AM.

Living Arrangement
Hotels are expensive in New York. When I looked, it would have cost over $1200, plus hotel fees and taxes to stay for 8 nights (and that was the cheapest and somewhat accessible rooms). I posted a question on a forum at Carecure (Carecure.org) and asked other individuals in wheelchairs how they overcame this difficulty, and I received many useful tips. I was able to find a few wheelchair-accessible rooms for rent by New Yorkers using airbnb (airbnb.com). I finally booked 1 room from a woman who had great reviews from others and the bathroom size seemed bigger, although it didn’t have a wheel-in shower. Still, I was able to save more than $600.

Transportation
Taxis are expensive in New York if you are known as a tourist, and the few wheelchair taxis must be booked in advance. Since I strategically booked my residence in Brooklyn, which is in between Manhattan where I want to visit and Long Island where I was going for the wedding, this cut down our cost for transportation by quite a bit. We purchased 2 weekly transit passes for $60 in total, giving us unlimited access to the buses and subways for 7 full days. (Due to a misunderstanding, we actually only needed to purchase one ticket, because aides ride for free) I also downloaded a free iPhone application called NYCway; it comes with maps of the subway stations and locations of all wheelchair-accessible sites.

Food
There are way too many food places to eat in New York, at least 4 restaurants on every block if not more. Since I was living in a loft with a kitchen, my aide and I were able to cook some meals and save money on food. Since my goal was to visit New York, I planned a strict budget of $100 hotdogs fund and $400 meal fund. I actually spent in total: $60 for groceries which covered breakfast and 4 dinners, and $40 on street vender food. The only regret was not being able to try the famous Japadogs and lobster dogs.

Equipment
In order to make things easier for my trip and transportation, I decided not to take my commode chair. I created a packing list with carefully calculated numbers of everything to bring on my trip, even down to the number of Q-tips. I changed my routines and had to come up with a new way to do my bathroom routines in my chair. I like a good challenge, and I was tested on of the sightseeing days. However, the strict packing and not bring my commode chair saved us time, energy and money for the trip.
Now everything was planned perfectly, yet still with the expectation of something will not go as planned, “New York! New York, here I come!”

And what a wonderful experience it was along with some wonderful hiccups! We visited most of the usual tourist attractions, the most memorable of which was the MoMa (museum of Modern Art). Even when we got lost, we found so many helpful New Yorkers eager to help 2 tourists and, best of all, I got to watch off-Broadway show: Spider-Man, the musical.

Altogether, including covering the cost of my aid/traveling companion, our total budget and expenses came to less than $3500 for my 9-day New York dream vacation …. So, being in a wheelchair should not hinder your desire to see the world. What are you waiting for? With proper planning and thrifty thinking, you too can be singing … New York! New York!

The Ramp

Whether it’s making love or the act of sexual pleasure, both are important needs in our lives… and yes, that includes persons with physical disabilities.  You may be surprised to hear that persons with physical disabilities do have sex, and sometimes as much as the able-bodied population.  However, sexuality is almost a taboo within the disability community and an unknown to the rest of the world. Continue reading