It was just...time

Andrea's good friend Juan, who doubled as her tennis coach, asked me from time to time in his easygoing Argentinian accent, "When am I going to see you back on the court?" I had told Juan that I used to play but I just didn't have time anymore. 

My son often asked me what sports I played as a kid. "I played baseball, basketball, soccer and some tennis," I always reply. Tennis was always last on my list. It's the sport I wanted to forget. Why? I couldn't even figure it out until recently.

For years, I played competitive tennis as a junior. I was never ranked in the top 50 nor did I ever win a singles tournament. I'm just saying not to compare me to Roger Federer. 

I was 18-0 in high school doubles but I was never one of the top players on a highly rated high school team. Still I loved the game and for the most part it loved me back. The constant moving back and forth caused me to release my mucus and therefore kept my lungs in decent shape. As the years went on, I won a round-robin tournament, made it to the finals of a ranked tournament (in which I knocked off the top seeded player in the semifinals) and began taking lessons several times a week. I even gave lessons to young kids over the summers. 

The problem became when I won, it was more a relief than a thrill. When I lost, I thought about it for weeks and months and criticized myself for hours everyday. I would throw my racket all over the court and scream when I lost points. When I came home, my dad would ask how I did and it would pain me to tell him when I lost. When I won, I just said "I won. Going to my room now."

After my high school days, I decided not to try out for the UGA tennis team. I used to play the team's racket stringer several times a week and won a few more times than I lost. I knew with that record I was never going to be able to compete on a top ranked NCAA team.

I stop playing tennis my freshman year and only played off and on for the next decade. I played on a club team in the early 2000's and got so frustrated after being eliminated from two straight playoff matches that I had an emotional breakdown in my car while my wife tried to console me. Tennis, while keeping me physically healthy, was emotionally killing me. 

Slowly I went from playing on club teams to being able to count on one hand how many times I played per year. Finally, four years ago, I just stop playing. My rackets went from being stored in the house to the garage to eventually the back of the storage room in the basement.

Why was it so hard for me to go back to the storage room, grab my racket and ask someone to play? Then it dawned on me, I realized what tennis was for me.

Tennis revealed my issues with depression and anxiety.  The losses were horrible and the wins were acceptable. Tennis may have loved me but in truth I hated tennis. It brought out the worst in me. It triggered my depression.

I learned to cope with all the things that brought out my anxiety and depression. Well, except for tennis. That didn't become clear to me until last fall. Andrea was told that Juan passed away. She was shocked as were all of the tennis players at our facility.

As several hundred people stood on the courts remember Juan, I stood on a tennis court once again with sadness. This time it wasn't about me about it but about a person we had lost way too early.

Juan always asked me to get back on the court. I always refused, claiming that I just didn't have enough time.

But in fact, there was no better time than now.

When we returned from the funeral, I threw my racket case in the car along with my tennis shoes. I didn't immediately go back to playing but I realized I was done refusing the game.

Today I'm taking lessons once a week and I have partners that I play with here or there. I even joined a competitive team. My game is totally different now. Back in my heyday, I was known for lobbying and just keeping the ball in. Now due to my increased workouts, I am hitting the ball a lot harder and with more overspend. I have a completely different game. But the most important thing is that I have a completely different attitude.

My Titanic

I don't shy away from being open and honest about my mental issues. In fact, I often discuss my issues with depression and anxiety. Recently, I’ve been confronting another emotional stressor, that of envy.

 

I feel as if I'm trapped on the Titanic. Half of the ship is being rescued while my half wonders if we are doomed. In this case, people aren't being rescued based on wealth or social status, rather their survival depends on their genotype.

I feel like I'm never going to get off this boat.

Over the last 12 to 18 months, two major pharmaceutical breakthroughs have helped more than 50% of the CF population improve their lung function. The new drugs, Kalydeco and Orkambi, are not effective for the type of CF I have. 

 

While people like me are happy for those who are being treated, we are disappointed that we are not candidates for either of these drugs. Knowing this makes me feel as if I’m trapped with that disappointed CF population on a sinking ship. Emotionally it seems so unfair to read discussions on social networks like Facebook dedicated to talking about how patients' lives are so much better after taking these miracle drugs. I feel so selfish for revealing my envy.

It haunts me that my "breakthrough drug" may never exist.

I'm not fighting any less to beat this disease. I spend most hours of the day and night doing treatments, running, working out and doing whatever it takes to stay strong with cystic fibrosis. Yet, there is a part of me that is envious of those who take these new drugs and get to feel so much better. I'm sure that one day my genotype will have a breakthrough treatment. I know there are several companies working on one,and the previous FDA approvals only add momentum for future successes. Still, it is difficult to wait and wonder. 

 

Neither new drug is a cure, but then not all rescue boats are guaranteed to reach the mainland safely. Still, like the drugs, they offer hope. I worry that by the time the right drug is available for me, my ship will have already sailed or worse, sunk.

 

Still, this wouldn't be a post from me without a positive spin. I may have already received my first "miracle" drug 9 1/2 years ago, and then another 2 1/2 years later. I'm referring to the birth of my children. 

 

Avery and Ethan have changed my life. My health is no longer just about me. It's about them too. I want to keep getting stronger so that I can see all of the milestones in their lives. They have changed my life more than any pill could. I think that perhaps each of us has received a miracle drug some time in our lives but might not have recognized it as such because it wasn't something we had to swallow or inhale.

These miracle "drugs" got me to 40!

And they will get me even further.

We each need to find our miracle treatment. It may just be looking us right in the face. 

In my case, that couldn't be more true.

Live your dreams & love your life.

Andy

Life & Death

Ever heard the old expression, "Life is an open book"? Like a book, life has a beginning, a middle and an end. 

Sadly, a lot of people focus on how the story ends rather than enjoying the development of the characters,  the vivid descriptions, or plot line progressions of the story itself.

Just a few years ago, I was strapped to an IV pole, struggling with pain all over and enduring a terrible smoker's cough though I'd never even taken one puff of a cigarette in my lifetime. Just another miserable day fighting cystic fibrosis.

During that episode, I lived in a constant state of fear. I wasn't worried about how I was going to live my day rather I focused all of my energies on how I could outsmart death. What I didn't realize then was that I should have concerned myself more with the former than the latter.

Why is it so important to worry less about dying than worry more about living? I guess in short, everyone dies but not everyone lives. Yes, we all technically live because each of us breathes but I believe the true definition of living should not just be to inhale and exhale oxygen 24 hours a day. Living, to me, is attempting something that scares you. Living is going somewhere that is outside of your comfort zone. Living is accomplishing feats that are considered improbable.

My definition of living probably varies from many of you. I have lived with an enormous chip on my shoulder since I learned of the mortality rate that came with having this incurable genetic disease.

Living with cystic fibrosis provides me with a tremendous opportunity to view life more appreciatively. We each live only once so really it doesn't matter what ends our tour on this earth. What matters is how much we appreciate our days while we are here.

Does this mean that I am grateful every moment that I spend on this planet? Heck no! There are days when I wonder "Why me?" There are mornings that I wake up on the wrong side of the bed. There are occurrences that cause me to question life's fairness. These moments, however, are brief compared to the times that I relish experiencing another day as a part of our beautiful world.

Too many times I hear people complain about the "small stuff." Why is traffic so slow today? Why is there nothing good on television? Why does it continue to rain?

Perhaps it's perspective.

With traffic being so slow, I have more time for self-analysis or to listen to my favorite CD.

If there's nothing on TV, I can take that time to enjoy my family or take a much-needed nap.

If it continues to rain, I can work on a project that I've been pushing aside for months. I can call someone I haven't talked to in weeks or perhaps months or even years.

Life isn't about dying. If it was, we'd all be the same. It's about living and therefore we are all different. We each have the choice to make the most of every moment. If we don't, there is no one else to blame but ourselves.

The final chapter of your story shouldn't be the best one. Don't just skip to the last page; that's not where life happens. Enjoy your entire story. Make it the best book ever written.

As always, Andy

Live your dreams & love your life

Changes

So it's been a crazy few weeks for me and my family.

My company was officially sold today and therefore I am bidding farewell and focusing more on health, family and a passion project (that I'm still figuring out). The company was in the process of being sold for some time so leaving DiversiTech was not an overnight decision for me. It was great to sell the company and have a lot of people prosper from the sale. It was also a relief to sell to a company that was going to keep most of our organization in tact.

Leaving my job is difficult. I've already informed my co-workers and suppliers. I even informed my personal trainer that my days at the fitness center are numbered as it is too far from my house. She looked as sad as I look each time she tells me to do 20 burpies.

If anyone wants to reach me, you can still do so at andy@andylipman.com or alipman2001@yahoo.com.

I want to continue speaking as a profession. I'm already in touch with a few people as to how to take my speaking to new levels. I remember the final episode of Mary Tyler Moore when Mary and her co-workers are extremely emotional as they leave for the final time. I think I'll leave with those same feelings. The last thing I'll take from my office is the name tag that has stuck to my door for the last 18 years.



Mary, I get it.


CF patients rarely have the strength nor the employer support to be able to keep a full-time job. I've been fortunate to have an understanding team and the ability to work at my company for nearly 18 years. I'm going to miss DiversiTech. When I arrived, we weren't a very big company but as I leave we have been a Top 100 private company in Atlanta for more than 5 years running. Doing treatments prior to work, at lunch and as I departed each day just became too much for me to handle. My last day will be this Friday May 22nd.

In other news, the FDA Advisory Council recommended approval for another great CF drug Orkambi from Vertex Pharmaceuticals. It doesn't yet affect my genotype but we are headed in the right direction as it affects 50% of CF patients. There are lots of cool studies going on. Too many to mention here but we seem to be getting ever-closer to a cure for this dreaded disease.



More great news for the CF Community


The girls' softball team I coached made it all the way to the finals. I was so proud of my Ducks specifically number 9 on my team. That's Avery. She came in with no softball experience and a fear of the ball. She leaves as a top outfielder and a 5-for-5 hitting performance between the semifinal and championship game.



Quack! Quack!


My son made the All-Star team. I'm so excited for Ethan. We've been spending everyday lately at the fields. In fact, Saturday I had the wrong time and we arrived 2 hours early and we ended up warming up for half that time. The kid can't get enough of baseball. Or basketball. Or football. I wonder how he became a sports junkie. Yeah, I know.



Play ball!


Andrea is doing great. She's been very supportive during this period of change. She has done an amazing job orchestrating a new home project. A pool!!! It should be ready before the summer. We can't wait!



It's coming along swimmingly.


I'm dealing with some anxiety wondering how my life will change with so many things up in the air, but over the years I've learned how to cope with these sorts of changes. Overall, this is a very positive change. I guess part of me feels like having a fulltime job was another way I was beating cystic fibrosis. I felt that same defiance by having children, being able to exercise daily and by living past my 40th birthday. I will find other ways to defy it though.




My change in lifestyle won't affect my goal to raise awareness for cystic fibrosis.

Just a few more days till I bid farewell to one stage of my life...

or should I say just a few more days until I begin a new one.

Live your dreams and love your life.

Andy

Howard at 39

Today would have been Howard Lipman's 39th birthday. He was my best friend growing up. He was the one I could tell all of my secrets to. When I was dealing with major coughing attacks, he was the one who didn't ask if I should go to the doctor or show constant worry on his face. He just sat by my side and listened to my concerns. He was the one who made me laugh when laughing didn't seem possible. He gave me hope when hope seemed lost. He relieved my fears when I had every right to be scared to death. I loved him and he loved me.

Howard was a crazy guy. He used to drive the girls wild. He was extremely affectionate, but he could be tough too. He once stood up for me when a bully attacked me. Still Howard got in a lot of trouble and I know there are times when my parents wanted to ship him to Antarctica. I'm glad that they never did because Howard...

saved my life.

In the 15 years I knew Howard Lipman he didn't speak one word yet his constant listening spoke volumes. Howard believed in me when the Vegas odds would have called me a longshot. Howard was there when I read the encyclopedia article that told me I would not see 25. Sadly the truth is that my life expectancy was always greater than his but he showed me that living in the moment was all that mattered. Howard was there when I got my first therapy machine. Though he was scared at first, he still sat with me as I turned on that noisy metallic monster. He never saw me as the kid with cystic fibrosis. He saw me as his best friend.

Howard died 23.5 years ago.

The fact that Howard was a dog does not lessen his loss one bit. I never saw him as "just" a dog. I saw him as a brother. I saw him as a great friend. A best friend. And I will celebrate his memory every April 1st until the day I pass.



Howard wasn't just a dog.

We got Buddy last summer. The primary reason I wanted a young dog was for our other dog Magic to have a playmate. What I didn't realize is that we'd found a crazy, mischievous dog who licks everybody who gets close to him. I always wanted my kids to meet Howard. Seems like they're getting that chance with Buddy. As much as I want to beg him to stay out of trouble some days, I look into those doe-like brown eyes and I see that brown crazy mutt who wrecklessly ran into my life 39 years ago...more like ran into my heart. I see my best friend. I want my kids to experience that same unconditional love.



The moment my kids first held Buddy they began to feel a love I'd never thought they'd get to experience.



Now they're experiencing it.

Glad "Howard" is back...

though I still miss the original.

Love you Howard.

YOUR BEST FRIEND

What's the point?

So I was thinking about something the other day.

What’s the point of doing my best when I’ll probably die from this disease anyway?

What's the point of spending every moment of my life dealing with an incurable beast?

What's the point of having dreams when they seem so unattainable?

Some people would say “Well that’s a defeatist attitude!” Until you have a terminal disease like cystic fibrosis, it’s difficult to judge a person for that opinion. These were the questions that filled my head throughout my early college days.

I have a doctor's appointment this Thursday and I don't know how it is going to do. I work my tail off each day to fend off the effects of cystic fibrosis but honestly during some of the more exhausting days of working out combined with the trials of having CF, that question still pops into my head a time or two.

It's taken me a long time but I do understand now "What’s the point?”.

The point is that there are no dress rehearsals in life. You’re dealt a hand and those are the cards you have to work with. You could give up and die. That’s your prerogative but you’re not getting a second chance.

I look at cystic fibrosis as an opportunity to do something great. I look at it as an opportunity to build a legacy. I look at it as a way to create hope for others.

My parents were told I wouldn’t see my teens. When I was 8 years old, I read that I wouldn’t see 25. Most of my life I’ve been chasing the median life expectancy. Now it’s chasing me. I prefer to live my life like anyone else. I have dreams. Heck, beating CF is a dream in itself. I’m not adjusting any of these fantasies because of cystic fibrosis. Yes, the path to achieve them may take longer and that path may involve some obstacles and U-turns but it’s not going to change my motivation to get there. My wife and I had to go through IVF to have children, but fortunately it worked out and we have two beautiful kids. Not the ideal way to have kids but it worked. Dream accomplished. I wanted to run the Peachtree Road Race. When I train, there are times that I have to stop and spit and catch my breath. I've run it 18 consecutive years. Dream accomplished. I wanted to go to college. I had to understand compliance with my meds, deal with my depression and learn from emotional and academic failure. I graduated college in 5 years. Dream accomplished. Not the ideal route for any of these things but the end result was all that mattered...although each journey taught me a lot.



When I was a kid, I was scrawny and sickly - the ideal picture of cystic fibrosis.



As I got older, I realized that the ideal picture could change.

“What’s the point?” The point is anyone can die but not everyone can live. I want to live. I have a dream that my tombstone one days says "Andy died from natural causes." BUT even if I do die from cystic fibrosis, I hope that no one says I lost the battle to cystic fibrosis because I will fight everyday to ensure that CF never beat me. By the way, I don't think anyone has ever truly lost the battle to cystic fibrosis. Each of us fights at some point at varying degrees.



We were always taught that life isn't a fairy tale but with hard work, maybe it can be.

"What's the point?"

We each have a terminal disease. It's called life. Whether I die at 45 or 95, I'm going out on my terms not the terms of the disease that has been affecting my body for more than four decades. Cystic fibrosis has given me amazing opportunities. I've gotten to run with the Olympic Torch and tell my story to tens of thousands of people. I've gotten an opportunity to help people who were void of hope. I remember the line from Spiderman. "This is my gift, my curse." That in one sentence is cystic fibrosis to me. Yes, CF is a curse because I deal with pain, hours of therapy and taking copious amounts of meds every day. It's a gift too though. It helps me to appreciate every single day which a majority of people cannot do. It gives me opportunities that other people my age will never have. It also made me focus on some things that I otherwise would not have been interested in. I got into working out because I knew it might be the only solution to save my life. Now I'm a workout fanatic. I don't think I would have had my heart set on helping a charity if I didn't deal with the struggle of fighting the disease that the charity supports. I don't think I would have developed my sense of humor if it wasn't the best defense mechanism in my arsenol. One of the reasons I was introduced to my wife was because of my story...and for that reason alone, I cannot regret having cystic fibrosis.

"What's the point?"

The point is that I'd rather spend my life living than concern myself every moment with dying. And who knows? We might just see a cure in our lifetime...and I definitely want to be in the best possible situation to take advantage of it. I just refuse to give up on that possibility.

That is the point.

Live your dreams and love your life!



Andy

Foster Care

Seventeen years ago I signed up as a free agent at Atlanta Club Sport so I could meet people and play softball. This guy Tim had an opening on his team and selected me. I didn't know Tim nor did I know anyone else on the team. I was the second youngest guy on the team but liked the group that I was playing with. We went to parties together, went out after games and talked about our love lives, our jobs and whatever else we could think of. I kept one thing from all of these players, the fact that I had cystic fibrosis. I never talked much about my CF. I was embarrassed that I wore a vest every morning and took pills before every meal. I just wanted to fit in. I wanted to be a softball player. I wanted to be Andy Lipman. I didn't want to be the guy with the terminal disease.

A few months into my run with Fluffy En Fuego, one of our players, Bob Foster, told us that he needed our help...again. "Again?" I wondered. Apparently Bob ran a tournament every year called the Cigna Sports Challenge. Bob wanted volunteers for this event which featured Tug-A-War and putting for holes in one just to name a few. Bob told us it was all for a good cause...the Cystic Fibrosis Foundation. I hadn't visited the CF Foundation since I was a kid with my mom. I tried to separate myself from it. Everyone on the team volunteered and finally I relented and agreed to help out. Bob was one of those guys you wanted to support. His car tag read "BMOC" (Big Man on Campus). That's how he carried himself. He was one of those guys who you wanted to befriend. Bob and I went to the softball field early some days and played catch. He was the guy who hit a ton of balls over the fence and had this arrogant, yet funny, way about him.

I took part in the Cigna Sports Challenge as a volunteer and saw 2 young girls with CF who received a standing ovation from everyone afterwards. Bob announced that they were the reason that he did this event. Bob didn't have CF and to my knowledge he didn't have any close friends or family with the disease. Still out of the goodness of his heart, he helped put this event together over by Georgia Tech every year. That day a bell went off in my head. I wanted to run something for CF. That's where the idea of Wish for Wendy developed. Bob's influence had changed my life. To this day, I owe him for giving my life special meaning.

Our first year running Wish for Wendy was 2000 and Bob, as he promised me, put his own team in to help the cause. His Intellisales team had several of my teammates on it and I still have a note from Bob on the first Wish for Wendy poster which told me he was proud to help with this cause. Bob and I eventually went our separate ways as Bob got married and moved to Florida. I still thought about him often and looked him up to see what had happened to him. I hadn't heard anything until a few weeks ago.

I got a note from one of my old teammates Cary that Bob had Lymphoma and nothing was working. He was trying something experimental but odds were it wouldn't work. I contacted Bob's wife to check on him. She forwarded me a letter from Bob to all of his friends. The experimental procedure didn't work. Bob, as we speak, is in hospice care and probably won't be around much longer.

Bob, if you're reading this, thank you for all you did for the Cystic Fibrosis Foundation and for being a mentor for me. I will always be grateful that you took a naive 20 year old kid under your wing and showed him what being a leader is all about. You are a true inspiration and your family will always be in my prayers. It's ironic that the man who gave so much to those who had a disease that diminished their life expectancies is now the one battling a disease that will take his life way too soon.

There's aren't many Bob Foster's in the world. I'm just honored and forever indebted that I got to meet one of them. Bob, we love you guys and your legacy will last even when you're gone.

All my best,

Andy



Bob, Jennifer and their beautiful family