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Klippel Trenaunay Weber syndrome

Klippel Trenaunay Weber syndrome or KTWS is a medical condition in which blood vessels fail to form properly. more...

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The condition was first described by French physicians Klippel and Trenaunay in 1900 and termed naevus vasculosus osteohypertrophicus. In 1907, Parkes Weber independently described the condition as process hemangiectatic.

Although the cause and processes surrounding Klippel Trenaunay Weber syndrome are poorly understood, the disease is diagnosed by the presence of at least two of the symptoms on a single extremity:

  • A distinctive port-wine stain with sharp borders
  • Varicose veins
  • Hypertrophy of bony and soft tissues

The disease affects men and women equally, and is not limited to any racial group. It is not believed to be genetic in nature.

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Casey's last stand : Casey Martin awaits the decision that will rule his future in golf - disabled golfer seeks the right to use a golf cart on the PGA
From Golf Digest, 5/1/01 by Tim Rosaforte

On the counter in Casey Martin's kitchen are two symbols of his future. There, still in its plastic case, is Martin's 2001 Buy.com Tour pin. Inches away is a photocopy of the Supreme Court documents involving Martin's case against the PGA Tour. It is a January morning in Eugene, Ore., one of those cold, damp and dark Pacific Northwest days. Martin has plans to beat balls as soon as the interview is over, but now he is on the piano, playing "Faithfully," one of the songs that made Journey famous in the 1980s. The title might as well be the theme song for his story.

Six days earlier, Martin sat before the Supreme Court, watching as the justices questioned his attorney, Roy L. Reardon, and an attorney representing the PGA Tour, H. Bartow Farr III. The court's decision is expected by the end of June, at which time Martin hopes his life will return to normal, that he'll be allowed to continue riding a cart in PGA Tour events and be able to earn a living under the parameters of the Americans with Disabilities Act.

Feeling less pain in that famous right leg than he did 311/42 years ago when this case began, Martin sat down with Golf World Senior Writer Tim Rosaforte, and in an expansive interview, discussed his fears, his faith, his feelings on PGA Tour Commissioner Tim Finchem, his days at Stanford with teammates Tiger Woods and Notah Begay III, and how he has fought the pain of Klippel-Trenaunay-Weber Syndrome, the circulatory ailment that has affected his every step since childhood.

GOLF DIGEST: What will be your lasting memory of that day in front of the Supreme Court?

Casey Martin: When the judges walked out and everyone rose, the thing that kept running through my mind was, "These nine people just chose the leader of the free world, and now they're going to decide whether I ride a cart. What am I doing here? Why are they hearing this when they have better things to do?"

What were your emotions that day?

All over the board. It's like a game, the momentum swings. But it was a wonderful experience, something that I never wanted to happen--but at the same time, shoot, enjoy it.

How did you think your attorney fared?

Roy Reardon did a great job, but he got grilled. No doubt about it. Justice [Antonin] Scalia was the hardest on him, by far. He had a lot of questions about other sports like baseball and the strike zone and how you could change a strike zone--obviously relating it back to golf.

You never know what these judges are thinking. But if they were speaking from their hearts when they asked their questions, I'm in a little bit of trouble.

Did the Supreme Court's involvement in the recent presidential election give you a better understanding of how they might rule in your case?

I watched that pretty closely, just to see how they responded. One thing that I think is interesting, which I might gain a bit of hope from, is that a lot of the tough questions toward Bush's side were from guys like Scalia. They were pretty harsh toward my attorney, but they were harsh toward Bush and they ended up siding with him.

When I walked out of the courtroom I was shaking my head, going, "My goodness, that guy just singlehandedly destroyed everything we've worked for." Maybe he was just playing devil's advocate and getting the tough questions out.

It must've been tough to keep quiet in the courtroom.

There were a couple of times when I wanted to yell, "That's not right! No! No!" Obviously you can't. You'd be tossed out, and that wouldn't have looked real good.

The etiquette in the courtroom is off the charts. You can't say a word. They have people lined up making sure you don't move too much. You have to sit still and shut up.

PGA Tour Commissioner Tim Finchem told you when you first sued for the right to use a cart that the tour would take it to the Supreme Court if it had to. Do you give him credit for fighting an unpopular case?

This might have been an unpopular case, but it's not going to make or break them. As long as they have Tiger Woods, it doesn't matter what happens to me. If Tiger's playing, everyone's happy.

How do you feel about Tim Finchem personally?

When I see him, I get along with him fine. But I'm frustrated at the stance he's taken. And there have been a few times I've felt that there's been some double-talk going on from his end. But I don't go to bed with bitterness toward Tim Finchem or the PGA Tour. I just refuse to play that game.

If you lose, do you think the tour will grandfather you in and allow you to ride in a cart after all?

I don't. I've heard from many people that they will. But my gut tells me they won't, because Tim said they won't.

Yet the PGA of America has said it will let you ride if you qualify for the PGA Championship.

It's nice to know that the entire golf establishment isn't against me.

If you lose, is there any chance you would try to walk and play?

There's a chance I might give it a go. But realistically, even if I did walk, it would be pretty short-lived. I hope I won't have to deal with that, but we don't always get what we want.

Would you have played something other than golf if not for the leg?

I would have played basketball in a heartbeat. When I work out, I lift for 20 minutes and then I go shoot hoops for about 40, because I love to shoot. I can't move, so I can't play. It just kills me when people play pickup games. Like last night down at the church they were playing. I wanted to play so bad, but I'm not an idiot. I think if I could be a professional in any sport, I'd be a shooting guard in the NBA.

If you were a football player, what position would you want to play?

I'd want to play safety, so I could hit somebody. I'd want to come up and just flatten some poor guy across the middle.

At Stanford, you watched Tiger play intramural basketball with Notah Begay and others. What kind of game does Tiger have?

He's got nothing. He's got no game. And I love him. He's the greatest at his sport--maybe ever. I mean, there might not be another athlete who is as dominant at their sport as Tiger is. However, you've got Jordan crossing over, playing other sports. Tiger will never cross over to be a basketball player or anything else.

I remember Notah and I were in Sigma Chi fraternity as seniors, and Tiger had pledged Sigma Chi as a freshman. At some of the parties, I'd come and kind of sit up on the stairs overlooking this big mosh pit where everyone would dance. I'll never forget one time a bunch of us were having a grand time watching Tiger dance. You know a guy that's so dominant, you've got to bring him down a little. You've got to look for his weakness and really expose it. I think we found it--dancing, it's a bad deal.

Notah tells a story about you, a rubber raft and a rushing river at Stanford. How do you remember that?

I was an idiot to do what we did. There's a creek that runs through the Stanford Golf Course. It's almost dry year-round, but in the winter when it rains and the water pours down off the hills, it floods and you've got a river running through the course. We had always wanted to raft down that thing. We planned it for a year, but never had the guts to do it. Finally, we were bored after it had rained for about two weeks and we couldn't practice golf, so we said, "If we're ever going to do it, now's the time."

Another fraternity brother of ours got this old, two-man raft. We pumped the thing up and four of us got in it and off we went. Once we were in the water, we had too much weight, so the thing just sank. We knew we were in trouble. It was freezing, and we started going down pretty quickly. Notah was trying to steer, but he steered us right into a tree and the front went up while the back flipped underneath. It was terrifying, because I was under the tree, under water, and I shot 30 feet down the river. I got out of the water as quickly as I could, like a drowned rat and very cold. The whole thing lasted about a minute, but it made for some great stories.

Back to dry land: What were your first impressions of Tiger as a golfer?

I can remember the specific time. He had just showed up at school, and we went to play Sharon Heights, a private course not far from campus. Tiger, Notah and I went out there and Tiger pretty much called every shot he was going to hit. He hit every green and would have shot 60, except that the greens were unputtable because they had just punched them. I remember getting in the car with Notah afterward and we kind of looked at each other and just went, "What was that?"

That's the way it was all year. Tiger would hit a bucket of balls and there would be a little patch of grass picked clean, barely getting to the dirt. If we hit that many balls, we'd have a hole about six inches deep, almost striking oil.

Could you have predicted that he was going to be so good as a pro?

I remember playing a tournament in Hawaii with some guys from Arizona State. They were saying, "Aw come on, he's not that good. Phil Mickelson was better than he is." I remember saying, "No knock on Phil--Tiger's better right now as a freshman than Phil is," and Phil had been on tour for a couple of years. "I don't get to see Phil up close, but there's no way he's better than this guy." They thought I was crazy.

What's the best shot you've ever seen him hit?

We're getting ready to play in the NCAA Regional [in 1996]. There was a storm coming through, it was about 45 degrees, and blowing hard. We're on the 10th hole at New Mexico's golf course, a par 5. He was about 240 out and he took a 4-iron. The wind was just howling to the point that we quit, I think, after this hole. He hit this shot from 240 and it never got above 10 feet high, flew the entire way . . . just a blistering 4-iron that flew right onto the front part of the green. It must have ended up about 10 feet. He said, "I just played it back in my stance."

There's no way another human being could have hit that shot. How much has he changed as a person since Stanford?

I'm not that close to him, so it's hard to say. I think he's matured, just from observing him on TV. He got thrown to the wolves at a very young age, and he made some mistakes. But he learned from them. Shoot, he's the complete package as far as golf is concerned. If he works on his language a little, he'll be the full deal.

There aren't many hecklers at tour events, but you encountered one last year. Afterward, you said you came close to taking a swing at him.

I'm not a fighter, but I could have done some damage. It was at the TPC at Avenel, in the Kemper Open. I was playing very well going to the final round. I was on the 12th hole and the whole green was lined with people. I missed about a 20-foot putt and the crowd went, "Ohhh!" Then some guy yells, "Too bad, you cheater!"

I was playing with David Peoples, and David came up to me and said, "Man, just forget about it." I said, "David, did he really say that?" He goes, "Yeah, but just forget it."

I went looking for the guy in the crowd. I had so much tension from playing poorly that day, so much tension in my life from just the struggle of golf and wanting to do well and then when that happened, I could have exploded. But fortunately the guy was chicken enough to not show his face.

How much did anxiety and the time you spent on this case affect your golf game?

When I'm out there playing, it's not even going to cross my mind. But at the same time, it very well has an impact, I'm sure. I'm dealing with a lot of uncertainty, a lot of logistical nightmares, a lot of things that raise tension.

How close do you think medical science is to either a surgery to cure you or a treatment that would allow you to continue to play?

I went to Chicago for treatments, and unfortunately they haven't worked. But I guess one scenario would be that if I were to lose the court case and the tour were to take the cart away, then I'd pretty much be done. Maybe then I'd take some time and intensively seek medical help and other alternatives.

By alternatives, are you're talking about a prosthesis?

No, not yet. That's an alternative, but it's the drastic one. I think I can be competitive if I were to lose my leg below the knee. I really do. I don't think that would hinder me too much. The problem is my leg and my knee are so messed up, that to have this prosthesis right at the knee would correct only part of the problem. Realistically if I were to get my leg amputated, it would be somewhere up here [at the thigh] to get the bulk of the problem.

Have you emotionally prepared yourself for that?

Part of me says it would be a relief. Those nights of waking up and dealing with intense pain in my tibia [the inner bone between the knee and ankle], that would be gone. Obviously it would present a lot of new challenges. I don't fear that like maybe I should. I think I'd still be pretty active. However, if it were above the knee, I don't think I could compete at this level. Not a chance.

What's your first recollection of pain in that right leg?

It's been with me all my life. I can definitely remember one of the hardest parts about growing up was wanting to be active. I could never understand when I was done playing sports why I was in so much pain. I knew I had a problem.

What's it like today compared to two or three years ago? Is your leg deteriorating?

It's actually leveled out the last three years. Since I've been riding, I'm in less pain than I was three years ago. There are some days, like today, where I feel OK, and other days where every step hurts. It depends on how active I am.

Do you take painkillers every day?

I live on Advil. The ibuprofen takes enough of the sting away or enough of the pain away that I function pretty normally. If I don't take it, I can't make it through the night.

Describe the pain.

There are different kinds. The bulk of the pain that I experience is in my tibia, and it's just a very deep, throbbing pain that's in my bones. If my tibia weren't in such bad shape, I'd probably still be walking. The other pains I have are in my knee. I have veins that are just messed up.

How much walking do you do?

On a regular day, I'd say I lead a normal life. I don't run or jog, but it doesn't prevent me from doing things.

Anything that's especially difficult or awkward because of the leg?

It's become second nature. When I take a shower, I can't stand for very long because my leg swells up. I get the feeling of, "Oh, my gosh, my leg's going to explode."

How much longer will you be physically able to play golf?

I don't know. Years ago I thought I wouldn't make it to this point. I feel like I'm playing on borrowed time.

It's been said that you're one wrong step off a cartpath from breaking that leg.

I do think about it sometimes. The pain, it would be very ugly. And it's realistic in the sense that the doctors aren't just blowing smoke when they say that. I've seen X-rays of my tibia, and it's brutal.

What's the most pain you've ever felt on a golf course?

Last year while playing in the Nissan Open at Riviera, I stepped in kind of a sunken sprinkler and I thought I had lost it. It was the first time I ever played golf in tears.

So much of the argument either for or against you is the hypothetical. Suppose it's 98 degrees, with 98 percent humidity, and the tour's in Memphis. You've got a cart and Justin Leonard does not. Who is more tired at the end of that day?

First of all, I would much rather be in his position walking than mine. You cannot devise a scenario where I would rather have my disability and a cart versus having two healthy legs. You just can't. A common perception toward people with disabilities seeking accommodations is that you're going to have an advantage, and that's just a gross distortion of the truth. Even in that hot climate, I'd much rather walk. I'm sure a lot of those players would love to take a cart that day, but I guarantee you they would not like to take a cart with my leg. I still deal with the elements like everybody else does.

There were some guys who didn't support you. Were there players, without naming names, who were jerks?

No one was a jerk to me. There are certainly some people I don't have respect for now that I might have had beforehand. That just happens because you're out there--you get to see guys as they really are.

Hasn't Jack Nicklaus reversed his position on your case?

I've gotten to know Gary Nicklaus and Jack a little, too, through Gary. I like Jack a lot. When I see him, he's very friendly and he's even said that in hindsight he thinks the tour should grand-father me in. That means a lot to me.

What do you think the percentage is among players for and against you?

I really don't know, but if I were to lose this case and they were to take it to the players and say, "Let's vote on it," I think I'd win.

You were pretty close to the top in driving distance last year. How can a guy basically with one leg hit it so far?

First of all, I'm fairly tall and moderately strong, although I'm not going to win any weightlifting contests. You get power in your swing, not from lower-body movement. You really get power from your torso turn. Because my leg is the way it is, I'm not able to straighten it, and when I swing, my hips are pretty quiet. If my left leg were bad, I wouldn't be a long hitter. But because my left leg is strong, I'm able to drive and hit up against it and hit it pretty far.

Where would you be without Nike right now?

I'd still be playing golf, but a lot of the support I have has been from Phil Knight and Nike.

Is it true that Nike is paying your legal bills?

There's no truth to that. My legal bills have been handled by me. Now, I have an endorsement contract with them. They pay me, and I've used a lot of that money to pay my legal fees. But I have been blessed legally to the point that my one main lawyer, Bill Wiswall, hasn't taken a dime from me. He hopes if we do prevail, the tour will pick it up. And then my other lawyers, Simpson, Thacher and Bartlett, have been more than gracious to me, financially. I've paid them a nice sum of money, but not near to what the full tally would be.

Having said that, it's still very expensive.

How expensive?

I'm not going to tell you the exact figure, but it's well over six figures. If your golf career ended tomorrow, would you be set for life financially? I think most people think because of Nike I have some multimillion-dollar contract, which I don't. I've been blessed beyond belief as far as how well I've played and the endorsements I have. But it might not be to the extent people think. Being single, I don't have a ton of expenses. I'd need to work, but I'm in good shape.

What's the closest you've come to quitting?

There are numerous times I've played badly over a stretch of time, missed a bunch of cuts and I'm answering the same questions after my round. I'm out there on the road alone just going, "This is dreadful. This is not the way it was supposed to be." So there have been some low points when I've wanted to bag it. But when I wake up in the morning, even though I've been playing badly, it's still what I want to do.

Have you thought about what you'll do if you can't play professionally?

Obviously with my faith, I wondered if I would go into the ministry. But I think you kind of need to be called to do that. As for right now, I don't have the calling.

You could always get a job playing the piano.

I've got a little bit of game. I'm not classically trained. I really don't know what I'm doing other than I can read music and play. I can impress the novice pretty quickly, but if someone really knew what I was doing, they might see through some of my shortcomings.

Any other career options?

I've been encouraged to get into politics, but I don't know where to begin. I hate politics. I absolutely despise it. When I watch stuff on TV, I cringe. So when I was encouraged to do it, I thought, "My goodness, that would be a challenge for me." But that's way down the line.

How about your Stanford education? What do you think of your whole experience there?

I look back at Stanford and I loved it. But when I think of Stanford, I don't think of the classes I had and the incredible education I had. It was a great education, I'm sure. But I don't remember that. I remember the people, guys that I met through athletics or just through being there.

You majored in economics. Has it helped you in the real world?

If I could do it again, I wouldn't do that. It was boring to me. I did it because

I could have class in the morning and afternoons off to play golf.

What scares you more: amputation or losing this court case?

In the back of my mind I fear what it would be like to be alone somewhere and have my leg break. What would you trade for two good legs?

All the fame and notoriety I've had. I'd give all that back in a heartbeat.

You're leading a tournament by four strokes coming to the 72nd hole. Do you get out of the cart and walk down the fairway with your head held high or do you remain in the cart?

I think I'd walk it in.

Only 21 years until you're eligible for the senior tour. Have you thought about that yet?

No. But I guarantee you that's my favorite tour in the world. No cut . . . carts . . . it doesn't get any better.

Your idea of perfect happiness?

Heaven. Getting out of this world and going to heaven.

What's your current state of mind?

Moderately deranged.

What is the trait you most deplore in yourself?

Impatience.

On what occasions do you lie?

I take the Fifth.

What's your greatest extravagance?

My BMW.

What do you dislike most about your appearance?

I have a lot of bad-hair days.

What do you consider your greatest achievement?

As far as golf is concerned, the national championship of '94.

As far as life is concerned?

That's way too hard of a question. Ask me in 20 years.

What is your favorite occupation?

If I could have any job and be good at it, I'd be the football coach at Oregon.

What's your motto?

All things are possible.

Do you have a question for Casey Martin that we didn't ask? Send an e-mail to us at editor@golfdigest.com, and we'll follow up in a future issue. And for more Golf Digest Interviews, see www.golfdigest.com.

RELATED ARTICLE: The Martin file

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COPYRIGHT 2001 Gale Group

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