BEIJING — A prosthetic leg that will allow a man to run 100 meters under 11 seconds, a wheelchair that is so light and responsive that a basketball player can weave and turn through defenders with speed yet remain durable in a physical game or a racing chair in which a marathoner will complete more than 26 miles in less than 90 minutes.

When all is said and done, it is still the human machine that makes the difference but the advances in technology that have allowed the Paralympic athlete to perform at his or her best are nothing short of amazing.

It’s no different than the Olympic Games where advances in technology and materials have led to greater achievements by athletes from cyclists and pole vaulters to sailors, archers, skiers and bobsledders.

The situation of bilateral amputee Oscar Pistorius in his bid to compete for the South African Olympic team made global news over the past year as the technology and comparison of his carbon fiber running legs were debated by the IAAF and later the Court of Arbitration for Sport. Pistorius won the 100-meter sprint gold medal on Tuesday night at the Olympic Stadium Bird’s Nest. In the odd coincidence that one could only find in a Paralympic Games, American Brian Frasure, who won the bronze medal, is also the prosthetist who helped build Pistorius’s first running legs five years ago. Also lining up in the race was former Paralympic champion and world record holder Marlon Shirley who was instrumental in the design of the carbon fiber “Cheetah” foot made by Ossur that has helped Pistorius maximize his own abilities.

“The goal,” says Frasure, “is to get as close as possible to what they lost.”

With less fanfare, the development of sport specific wheelchairs has been critical to the increased performance of the athletes here in Beijing for the Paralympic Games.

“I think that it’s athlete driven, the move to more sophisticated technology,” says Phil Craven, the former Great Britain international wheelchair basketball player who is now the president of the International Paralympic Committee.

“When I started wheelchair basketball, there were regulations that everybody had to have the same chair. So, if you were 6’6” or 5’10” you had the same chair.”

Another regulation that today’s athlete would find abhorrent, was that all chairs had to have handles on the back, a concession to the dominant manufacturers of the time that were more interested in their needs than that of the athlete.

“I was the fastest man in the world in 1976,” laughs former Paralympic athlete and coach David Kiley, a man known more for his achievements on the basketball court than on the track. What amuses him is that he gained that title with a 100-meter wheelchair sprint of 19 seconds in the Toronto Paralympic Games. That wouldn’t even get him into the field now when the world record, set by Finland’s Leo-Pekka Thati in 2006, is 13.88.

He recalls that technology had just taken a great leap forward. “It was a standard manufacturer’s chair, mostly heavy steel folding chairs made by Everest & Jennings or Stainless Medical Products that you cut and chopped into a race chair.

“That’s all there was,” he says referring to the folding chairs. “They were lighter than typical hospital chairs but still very heavy.”

He says that the improvements at the time on the four wheelchairs included getting the knees up higher and a smaller push ring.

“Racing chairs began to develop by athletes building their own. We were all just playing around, trying to make these things go faster. We were cutting down backs and taking off the brakes.”

The modified chairs were scarce and Kiley recalls that in relays, it was not uncommon to share chairs, using two chairs for four racers.

Kiley is a Michael Jordan of sorts as he was the first wheelchair basketball player to have his name on a specific sport specific wheelchair, the Quickie All Court, which has become the chair of choice for many top players around the world such as Canada’s Patrick Anderson and the USA’s Jeff Glasbrenner.

“It gives me the ability to be the best that I can be,” says Glasbrenner. “The chair is an extension of my body and without that, I wouldn’t be able to do the things that I can do.” 

A single leg amputee, Glasbrenner will be relying on prosthetic technology when he competes in the Iron Man Triathlon World Championships a few weeks after the games.

About 30 years ago while athletes like Henk Mackenzie, a basketball player from Holland were experimenting with odd notions like camber in Europe and Bud Rumple was building rigid box frames for his Detroit Sparks basketball players, Kiley was part of a parallel group he calls “a speed bunch” in California including Rod Williams and Garry Kerr, multi-sport athletes like himself who knew there was a better way. He says Williams, the first to use a smaller push ring on a racing chair, also devised “a little block that would create camber,” which, without question, has been one of the most significant developments in sports chairs.

“All of a sudden, you were turning like crazy.”

Craven remembers his first chair with camber in 1979. “It was an amazing opening up of the possibilities.”

Another Californian who would make a significant impact on the future of sports wheelchairs was Marilyn Hamilton, the founder of Motion Designs now know as Quickie, which was bought by Sunrise Medical in 1986 and joined in 1992 by the German based innovator Sopur, founded by former Paralympic track and handcycle racer Errol Marklein.

Twice a U.S. Open tennis champion as well as a Paralympic silver medalist in the 1984 Winter Games, Hamilton wasn’t happy with the performance of the equipment available, either in her personal life or on the court.

Hamilton, whose tennis chair is now a part of the Smithsonian Museum collection in Washington, D.C., was also the first person who realized that wheelchairs didn’t have to be the same color. It’s an innovation that while not necessarily technical, has been compared to the evolution from black and white television to color and is now everywhere.

Before Hamilton, the first athlete to take their own innovations to a broader market as a business was Jeff Minnebraker in the early 1980’s. It was Minnebraker who influenced others such as Brad Parks, who is credited with being the primary force behind the growth of wheelchair tennis. Minnebraker’s company, Quadra, the first real sports wheelchair manufacturer, made custom-built anodized and welded frames. He is also credited with developing the quick-release axel which is now standard.

As an athlete, Hamilton recognized that innovation in sports chairs was an opportunity as much as a need and pushed the research and development of better equipment for tennis, basketball and track. “You have to be responsive to the needs of the athlete. We don’t tell them what they need; they tell us and then we work with them with our engineers to continually improve the product.”

As the responsibility for modifying and improving the function and performance of a chair has moved away from the athlete, though that is still where much of the necessary information on how improvements can be made comes from, the performances have improved exponentially.

Along with Quickie and Sopur, both part of Sunrise Medical, other companies including Otto Bock, Invacare, Meyer and RGK are producing sport specific wheelchairs as the demand increases, not just for elite athletes but for recreational athletes around the world.

Previously left to their own designs, there is now a school of science with experts and engineers from many disciplines working with athletes to continually improve the equipment.

Tim Raiskup, who had worked on Indy racing cars for Penske Racing drivers such as Emerson Fittipaldi, Rick Mears and Danny Sullivan, has been an engineer for Quickie going on ten years.

As racing chairs developed into the three wheel chariots that we see today, the chairs used for basketball and tennis were still pretty much the same. A couple of years after the 1996 Atlanta Paralympic Games, Raiskup says that a mandate came down to create a specific basketball chair.

“We developed that chair with Dave Kiley’s help and a focus group of basketball players he brought in. We were probably one of the first specific chairs that was created for the sport of basketball. It became the All Court.”

When we first started this, the basketball players were just a straightforward push from one end to the other, bang into each other type of arrangement. Now, these guys are bouncing up on one wheel to get higher, they are falling over with the chair on top of them and getting back up with a simple push up. Trying to meet those needs and create something that survives these guys’ activities now is very different. It has to be light and responsive and very durable.

He says that one of the biggest recent innovations has been the addition of the integral anti-tip bars. It was begun in tennis but when it was applied to basketball, he says that, “it allowed these guys to play more aggressively. It allows the chair to be more of a mid-wheel than rear wheel, making it more responsive. Before to turn quickly on a dime, a player would have to physically ‘wheelie’ (pull back onto just the rear wheels) and transfer their weight.

As materials go, the chairs have evolved from steel to aluminum to titanium, which had previously been very expensive and time consuming to work with.

“The ability to get it and fabricate it in an economical fashion has been a recent change. It has allowed us to do what we need to meet the athletes’ needs with far less time required. The development of this in our everyday chairs has allowed us to bring it into the sports market.”

Former Paralympic champion Monique Kalkman, the first in the great line of female Dutch tennis stars that is now led by world number one Esther Vergeer, says that the adjustability of chairs like the Quickie Match Point have given the players the chance to combine greater seating height, which can add significant velocity to serves with the agile mobility prerequisite to moving about the court. Lighter in weight and extremely responsive, it allows wheelchair players more time to prepare their shots.

“If you can’t get there, you can’t hit it,” she says.

“In tennis it is important to be quick in your first push and in your turns,” adds Vergeer. “With my Match Point, it doesn’t take you much to do that. You don’t lose energy, power or strength pushing your chair so the pushing is very efficient.”

Efficiency is also the hallmark of racing chairs where the evolution from boxy four wheelers to long and sleek aerodynamic, graphite wheeled rockets has created a reverse paradigm where it is the Paralympic athlete that excels in longer distances.

Switzerland’s Heinz Frei, the winner of 96 marathons, hold’s the world’s best official marathon time of 1:20:14, set in 1999 in Oita, Japan. By comparison, Kenyan Paul Tergat’s world record of 2:04:55 set last September for an able-bodied runner is more than 44 minutes slower.

While durability is important, such as in the rough and tumble physicality of the men’s 1,500-meter semifinal races run here in Athens, the need for speed is the most critical element.

That’s why an elite athlete such as now retired Tanni Grey Thompson of Great Britain thought it was such a wonderful first gift her husband Ian gave her on their first date, a Sopur carbon fiber front wheel. Her friends were appalled. She loved it. “For a wheelchair racer it was a pretty sexy thing actually.”

The track and road racing chairs and to an even greater extent, handcycling chairs share the same kind of technology that is found in bikes ridden in the Tour de France.

Where will it go from here? The change has been coming so rapidly that the technology has possibly caught up to and perhaps exceeded the athlete. But as Olympic and Paralympic history shows, that won’t last for long and more innovation will come down the line with each new step giving greater edge to the human machine.

There’s some interesting articles, too.  Here’s one I liked by Steve Goldberg, “From the Games: the Making of a Paralympian.”

“Some are born great, some achieve greatness, and some have greatness thrust upon them.”  –William Shakespeare Twelfth Night, Act II, Scene V

BEIJING — Every competitor here in Beijing has a compelling story about how they got here. For most of the athletes, the Paralympic Games or the world championships in their sport have been their first experience on the global stage. Some of them have been athletes most of their lives while others came to Paralympic sport only after an accident or illness changed their physical circumstances.

Such is the case for three athletes, an American, a Canadian and a Spaniard, who came to the Paralympics after making their mark elsewhere.

The American

Dave Denniston was a 1999 NCAA team and individual champion while swimming for Auburn University. He set American records in the 50 and 100 meter breaststroke in 2000 and swam for the USA in the 2003 World Short Course Championships setting a world record as part of the 400 meter medley relay team with teammates Aaron Peirsol, Peter Marshall and Jason Lezak. Peirsol and Lezak swam in the Olympic Games here last month.

“Watching them swim was exhilarating to say the least.”

Denniston says he hadn’t determined if he was going to try for the U.S. team in 2008 after falling just short of making it to Sydney or Athens. He placed fourth in the 100 meter breaststroke and sixth in the 200 meter breaststroke at the 2004 trials.

After his accident though, getting to China for the Paralympics absolutely became a goal.

A few months later, in early February 2005, Denniston was sledding with a friend in a remote region of the Snowy Range back in his home state of Wyoming. It seemed like a harmless decision at the time when he made the choice to go down the hill head first. Despite his strength and coordination, Denniston lost control of the sled which slammed into a tree. He remained conscious the entire time but realized something was wrong when he couldn’t feel his legs.



Because of the backwoods area they were in, it took more than two hours for help to arrive. He was first taken to a hospital in Laramie, then to spinal cord specialists at Poudre Valley Hospital in Fort Collins, Colorado where he learned that he was completely paralyzed from the T-10 vertebrae down.

At the insistence of Jimmy Flowers, a former coach from Auburn, Denniston set his sights on Beijing and the Water Cube where his friends competed. “He encouraged me into looking to do the Paralympics for real in August of 2007.”

Honored by his teammates who elected him captain, Denniston says he was only vaguely familiar with the games. “I hate to admit it, but I was one of the people who confused the Special Olympics and the Paralympics and didn’t realize they were separate.”

“Now that I’m involved with it, it’s amazing how quick people seem to be responding to the Paralympics and getting to recognize many of these athletes.

Going into Monday’s 4-by-50-meter relay, he had finished ninth in two other events, not making it to the evening finals. But he recognizes that his past victories don’t mean immediate success in the Paralympic pool. He says he’s encouraged by the fact that his times keep improving.

“I basically had to learn to swim all over again the past year. It’s still the water, it’s still the pool. It looks like swimming but it feels completely different. There’s a lot of ways that I’m learning to make my body go through the water without the use of my legs.”

“At this meet, I’ve dropped two to three seconds in every event that I’ve swam.”

“I’m definitely looking to continue swimming until I feel like I’m not getting faster anymore. If I can keep doing that for four more years, then heck yeah, I’ll go to London. I’d love to go to London.”

The Canadian
At the 1984 Los Angeles Olympic Games, Misty Thomas marched in the opening ceremony as a member of the Canadian women’s basketball team.

“It was a childhood dream coming true, a fantastic dream,” said Thomas.
 
The Canadians would finish fourth, losing the bronze medal to China 57-62.

At 20, she was an Olympian. Two decades and four years later, she is in China, marching into the Bird’s Nest Stadium in Beijing as a member of another Canadian national team, the women’s wheelchair basketball squad.

Though admitting that it was anything but redemption, Thomas would have her revenge, beating hosts China in placement game 53-46 after the Australians had knocked favored Canada out of medal contention the day before.

To wear the Canadian uniform again, this time in the Paralympic Games, to a full and cheering stadium made her just as proud as she was in Los Angeles. She’s been averaging 13 points and 10 rebounds a game.

Born in Los Angeles to an American mother and Canadian father, Thomas grew up in Windsor, Ontario since she was five and came up through the Canadian basketball system. She made a number of national teams before playing college ball at the University of Nevada at Las Vegas where her No. 4 jersey has been retired. In 1998, at 34, the former point guard became the youngest individual inducted into the Canadian Basketball Hall of Fame.

Thomas only uses a wheelchair to play basketball. Though she can stand and walk, nine surgeries, including three reconstructive on both knees, have left her unable to play the stand-up game. In her work managing high performance sports programs for the Sports Medicine Council in British Columbia, she was more than familiar with Paralympic sports.

“I interact with all the athletes living in BC, both Olympic and Paralympic, so I had known the wheelchair basketball crew for years.”

The players had asked her repeatedly to come out and join them but it took a while before her schedule let it happen three years ago. The basketball part she understood, but the chair was daunting.

“It was fun to have this challenge of figuring out this really important piece of equipment alongside this game that I loved but had not been able to play for so long.”

When asked how long it took for her to get comfortable with the chair, she laughs and says her team is still working     on that. She says that being ambulatory and not having to use a chair every day like many of her teammates and opponents is a disadvantage on the court.

“People will say: ‘How is it fair that you as a player that can stand up gets to play in a wheelchair? How is that fair?’ and I tell them, ‘You’re totally right, it’s unfair to those of us who are ambulatory because they are so skilled in the chair.”

“It’s such a steep learning curve. Put Kobe Bryant in a chair and a junior girl would be able to stop him from scoring.”

“I still have a lot to get better at. The chair really is a part of them and I’m no where near that.”

The Spaniard
For Javier Ochoa, the highpoint of his professional cycling career was both metaphoric and literal. In 2000, the Spaniard beat Lance Armstrong and the rest of the field the peak of the Hautacam, nearly 5,000 feet above sea level in the Pyrenees, to win a stage of the Tour de France and finish 13th overall.

Seven months later, while on a training ride along an expressway near the southern town of Cartama in the province of Malaga with his twin brother Ricardo, the pair were hit by a car. The accident killed his brother and left Javier seriously hurt with head and chest injuries as well as a broken tibia and fibula. In a coma on a respirator for nine weeks, his weight dropped to 108 pounds.

Returning home after five months in the hospital, his world was dramatically different.  The accident and the coma left him unable to talk properly or solve simple arithmetic problems. He couldn’t walk without assistance but in October 2001, he told Spanish journalists that he hoped to be riding again within a year. He started to train, first on an Ergometer, then on rollers. In November 2002, 21 months after the accident, he got back on a bike for the first time.

At the end of July in 2003 he told the media that, “I would like to be Paralympic champion in Athens. I am going away to prepare for it. I do not know the level at which my rivals will be, with whom I am going to compete. I think that it will not be easy, but I will at least try to give the best possible level.”

In September 2003, he won seven medals, three gold, three silver, one bronze, in the Paralympic Open European Cycling Championships.

“One of the major differences is that we are not able to train as long and hard as other athletes. Six hours of training is quite arduous for us. We can only train two to three hours at a time.

In Athens, racing in the Cerebral Palsy 3 class, he won a gold in the road race/time trial event and a silver on the track in the individual pursuit. He defended the time trial gold last week racing around the Ming Tombs Reservoir in Beijing’s Changping district.

“To tell you the truth, I had no idea whatsoever about the time. It was after I crossed the finish line, maybe two to five minutes later that I realized I had won.”

In the road race two days later, Ochoa won silver, finishing second to Great Britain’s Darren Kenny by just two seconds.

He had been disqualified in the pursuit this year for following Kenny too closely.

“I faced a lot of difficulties, especially with all the rehabilitation I received. Of course, there are differences in terms of being a professional athlete but what I love to do more than anything is to participate in my sport and be part of the competition.”

And the chance to win again. 

Free delivery!  Fast, too.  It arrived within 48 hours of my pressing “buy.”

Originally, I was, how you say… ambivalent about having to buy a chair.  It’s really not the most joyful Internet purchase for a girl to make.  It’s no Zappos.com.  But I started looking around on the site, and I really got into it.  There are some hot wheelchairs on the market these days: ultralightweight titanium chairs, badass quad rugby chairs, chairs you play basketball in, reclining chairs, different colors…. 

I ended up going really basic.  I got the Invacare Tracer EX2, a 40 pound standard wheelchair that folds and fits in the trunk of my Honda Civic.  It’s the transport wheelchair of choice at most airports and hospitals, and I love it!  Easily the best $150 I’ve ever spent.

I’ve been using it for outings.  This may sound petty, but I haven’t been able to hang out at the mall in more than a year.  So my husband and I took the chair and went shopping.  And it was so nice to be out and about.  Normally when I run errands, it’s basically a race against time.  I have 10 to 15 minutes of standing time before the pain starts.  It was just great to be out without having that stopwatch ticking, you know?

And that’s the interesting thing about wheelchairs.  The idea of getting one scared and depressed me.  It was such a symbol of what was going wrong with my health.  But the whole point of a wheelchair is access, equal access.  You don’t have to be stuck in the house, you can be out there with people whose legs work just fine.

Which brings me to the Obama campaign connection.  My wheelchair arrived in a giant cardboard box emblazoned with the Invacare logo and their motto, “Yes, you can.”

Her mission statement:

“ButYouDontLookSick.com magazine is about living life to the fullest with any disability, invisible disease, or chronic pain and hopes to provide answers to the endless questions of: But you don’t look sick?” 

She wrote “The Spoon Theory,” a great two-page essay.  One day, her college roommate asked her what it was like to live with lupus.  Christine reached for the nearest analogy –  yes, it involves spoons.

Articulate and moving, definitely worth checking out.  She prefers that people link to her site to read.

Lately, I’m such a sucker for overcoming adversity stories.  Too much Oprah?

No secret is as carefully guarded as a celebrity suffering with a chronic illness, but the A-list producer wants to end this conspiracy.

By Tina Daunt
June 13, 2008

LIKE ANY small town, Hollywood has its secrets.

There are affairs, divorces, drug abuse. But no secret is as carefully guarded as a celebrity suffering with a chronic illness. Acknowledging publicly that you’re ill could mean instant unemployment.

Like the DMV, the studios insist that production companies have insurance before anyone steps on the set. If a star is sick enough to cause even the slightest delay in filming on a multimillion-dollar movie, it’s almost impossible to find coverage. It’s almost easier to have all the details of your personal relationships revealed in the tabloids than to admit you’re battling an ongoing illness.

A-list producer Lauren Shuler Donner wants to end this conspiracy of silence and discrimination.

Over the last two decades, she has produced some of Hollywood’s most popular — and profitable — films, including “Pretty in Pink,” “St. Elmo’s Fire,” “Dave,” “Mr. Mom,” “Free Willy” and all the “X-Men” movies.

And she did it all while battling the autoimmune disease lupus, as well as breast cancer.

“I know there’s a stigma that has made it hard for people to acknowledge it, if they’re sick,” said Donner, who was cured of her cancer but is still living with lupus. “I didn’t tell anyone I had lupus for many, many years, and I didn’t tell anyone I had cancer.

“I was afraid no one would hire me, and I also felt it was deeply personal. It was nobody’s business. Now, of course, my feelings have changed.”

Because of that change, she has become an outspoken proponent for lupus awareness and treatment. Last month, she was honored for her efforts by Lupus LA, a group founded by Donner’s doctor, Daniel J. Wallace, whom the producer credits with helping her cope with the chronic and potentially fatal disorder.

“I wanted to tell people you can live a full life, even if you’re not feeling well,” said Donner, who is working on seven films at the moment — including more “X-Men” movies and a screen version of “The Secret Life of Bees” — and will receive her star on the Hollywood Walk of Fame in October. “You can learn how to achieve on the same level as someone who is not handicapped by their health.”

Donner said she was diagnosed with lupus, which creates a toxic stew of antibodies that can attack virtually any healthy organ or tissue, more than 20 years ago.

“When I was in my 20s, I was always sick,” Donner said, sitting comfortably on a plush couch at her Beverly Hills production company. “I was always feeling exhausted. I had a fever all the time, and no one could diagnose me.”

Finally, she found Wallace, who recognized her illness and gave her the treatment necessary to live. All the while, she continued to work, making film after film in an industry that doesn’t always value female producers, let alone ones quietly battling disease.

Getting through it required Donner to change the way she lived. She learned to meditate, stay on her treatment, control her stress level and eat right. She admired celebrities such as Melissa Etheridge, who worked bravely in the public eye while battling breast cancer. It prompted Donner to also speak out about her condition, which she has started to do increasingly in recent months.

But holding up her record as one of Hollywood’s most successful and prolific producers, perhaps she can help change minds in the industry’s executive suites.

“Almost everyone I know is battling something, whether it’s allergies or depression,” she said. “Whatever it is, it makes you feel less than who you are. I believe part of life’s challenge is to work through that.

“I want to show people that you can still live a life. You don’t have to be defeated by illness.”

**********

The article probably means more to me because I live in LA, and I’m just starting my career as a writer.  There’s plenty of normal (non-entertainment industry) people here, too.  But for me and my friends, we’re all trying so hard to build our careers.  We’re all young writers, directors, producers, cinematographers, actors.  And for us, it’s scrabbling time.  It’s like — it’s a hard enough goal without having health limitations.  I want to take care of my work, not myself!

Anyway, thanks Lauren.  This just really spoke to something I’ve been thinking about a lot — I get how to have a life while being ill, I’m still figuring out how to have an ambitious life. 

Then I started using voice recognition software, Dragon NaturallySpeaking.  It’s a lifesaver, plain and simple.  I can write, search the web, etc. purely through voice commands. Don’t know what I’d do without it.

In any case, Nuance, the company that puts out the software, is throwing a contest.  In honor of their 10th birthday, they want to hear how you use Dragon NaturallySpeaking.

http://www.nuance.com/dragonstories/

I saw this and thought, cool, I like contests.  I like prizes.  My life is kind of interesting.  Maybe I have a shot.  Then I started reading. 

After the very first post, I gave up on the contest side of things.  Yeah, my life has its difficulties, but I was so impressed and humbled by what I read.  There are so many extraordinary life stories posted.  I really recommend checking it out. 

Here’s my favorite entry from Chuck Z.:

“Project Valour-IT began when I was wounded by an IED while serving as commander of a tank company in Iraq in June 2005. During my deployment I kept a blog, relating insightful stories of my experiences, and sharing self-deprecating humor. After I was wounded, my wife continued the blog, keeping my readers informed of my condition.

As I began to recover, I wanted to return to writing, but serious hand injuries hampered my typing. When a loyal and generous reader bought me a copy of the Dragon Naturally Speaking Preferred (7.0) software, other readers began to realize how important such software could be to my fellow wounded soldiers and started to cast about for a way to get it to them.

Patti Patton Bader from SoldiersAngels (www.soldiersangels.org) contacted me and we shared a vision of providing laptops with voice-controlled software to wounded soldiers whose injuries prevented them from operating a standard computer. Soldiers Angels offered to help develop the project, and Project VALOUR-IT was born. (Voice Activated Laptops for OUR Injured Troops)

For the last three years, I have not only used Dragon NaturallySpeaking to work, (I continue to serve in the Army) play (I continue blogging at tcoverride.blogspot.com) but I also use your software in charity work. So far, we’ve raised the funds to donate over three thousand laptops with this software to our wounded service members who’ve suffered brain, hand, and/or eye trauma and would otherwise be “disconnected” from today’s world. The use of your software to use a computer, to connect, to do something that I was able to do before I was injured made me feel somewhat whole, somewhat normal, for the first time. It has been my distinct pleasure and honor to give that feeling, a feeling of ability, to our wounded. Dragon has not only improved my life, it has changed my life.”

This is exactly why I started this blog. When you’re sick, it’s so easy to feel like you’re the only one hurting in a world of normal people. But that’s not true, is it?

I’m hoping this blog can be a place where we can talk frankly about our adventures in healthcare, where we can commiserate, blow off steam — and also count our many blessings.

This spring, I’ve had…

my first spinal tap

my first muscle biopsy (2 inches long, from my left thigh!)

a passel of nerve conduction tests

a bushel of blood tests

my first serious conversation about acquiring a wheelchair

my first time giving myself a shot

(A shout out to all you diabetes-sufferers out there, wow does someone need to redesign the syringes or what?! Those things are rickety and way hard to use. Is it just my pharmacy or do all personal-use syringes look like they were designed decades ago? I like 80s music and all, but I want to think we’ve learned a thing or two on the medical equipment front.)

Some of these experiences were a piece of cake, others (wheelchair, wheelchair!) are prompting some soul-searching.

My deal?

The latest diagnosis is that I have an autoimmune-triggered nerve problem.

My symptoms: trouble using my hands for very long (typing, housework, cooking) and most recently pain and tingling in my shins and feet when I walk or stand.

I’m very lucky: The doctors think it probably won’t get worse, and they have some ideas for treatment.

On good days, I really forget that anything’s wrong with me. I’m in the middle of some bad days now, and there’s some pain. I miss dancing. I miss being able to walk around without always worrying about finding the next bench. Basically, I miss being a 20-year-old in perfect health.

So there’s that balancing act again: I really am so lucky to be alive, lucky to have a great husband, family, and friends. But sometimes, sitting around in those hospital waiting rooms, don’t you just want to join hands and say, “This blows!”