Tag Archives: time

Breaking up is hard to do

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Last night at the LA Open tennis tournament, guess who sat down in the seat directly in front of me? If your first instinct was to say ex-girlfriend, I wish. Yes, it was an ex – my ex-CF doctor, which opened a flood gate of memories and emotions, most of them bad. What are the odds of this meeting happening? And it being the seat in front of me?

Here’s the backstory.

I’ve made a lot of mistakes managing my CF care as an adult. The greatest was leaving the care of Doctor Tennis at the wrong time. He used to be on the CF Foundation’s accredited center lists, but, for reasons unknown to me, abandoned that path and has since had a private practice as a pulmonary specialist. I stayed with him until I had major hemoptysis on a flight to Germany. I got pissed at him over that and switched to an official CF center, thinking they would take better care of me. Big mistake.

The CF Center I switched to at the time wasn’t, well, very aggressive in treating CF. For example, they used a peak flow for PFTs. Under their care I lost a load of lung function because they were too flexible with my care and I could push them to allow me to use orals when IVs were needed. Whereas, Dr. Tennis did PFTs every time I visited his office, which gave him a better picture of my lung function. He forced me to do IV’s when needed.

Then my CF Center improved and brought in a great team and I bounced back and forth between them and Dr. Tennis, until a hospitalization made me cut ties with him.

At the hospital Dr. Tennis practices at you need his care and an infectious disease doctor’s care when you’re in for IVs. They’re not really a team, but come together when needed. Unfortunately, I realized that the infectious care doctor, who I knew from visits to her office, really didn’t have a good handle on current CF IV treatments. I questioned her decisions. I thought I was doing it in a way that was pleasant – in a we’re partners in this and I know a lot about CF, too kind of way. However, she was immune to my infectious charm and wit, and broke up with me on day two of IVs.

The day before she came into my room and delivered that blow to the psyche, I had spoken to my wife about breaking up with her after the IVs. But she beat me to the punch. And, as it came on the second day of IVs when I was still mentally fragile, it bothered me (and my wife).

Both Dr. Tennis and another doctor said to me “it’s not you, it’s her,” or something close to that. It was good to know that I wasn’t the evil, crazy patient she made me out to be. Crazy? Well, perhaps, but she doesn’t have CF now does she?

So last night, it was comfortable talking to Dr. Tennis; it was okay. It’s probably been four years. His office never contacted me to see how I was doing like my current center did after three months. (I have a great CF Center now.) However, two interesting things did come up. He asked me if I’d like to participate in a trial of inhaled Cipro he’s starting. Yes. Why isn’t my center doing that? He told me his office would call to arrange it. I’ll believe it when the phone rings.

Then, when leaving the tournament, he mentioned the doctor that broke up with me and a piece of news about her. Oh, great. Thanks for that dart to the forehead. It’s not that I wish bad things for that doctor. I don’t. However, like a short fling with someone who broke up with you, you don’t really want to hear she has a new boyfriend either.

Past memories can be great, or they can bite. With CF it’s hard enough keeping bad memories boxed up without someone cracking them open for you. Next year, I think I’ll watch the tennis tournament on TV, or skip it completely.

Stay well.

Monday Musings – Tightrope Walking and Cystic Fibrosis

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What would it be like to be a tightrope walker?

Take one of the most famous, Philippe Petit: What’s it like to stand that high in the air, suspended between two buildings, knowing that you are completely alone? Should you lose your balance, no one will be able to help you. You can’t Google a solution or tweet your tweeps. Your cell phone rests out of reach.

Tinkertoy Tightrope Walker by moi & daughter

It’s you and the wire.

And that’s the obvious connection to cystic fibrosis – those moments when it’s you alone on the wire. You’re walking the tightrope with no doctor, no friend, no loved one, no tweet, no phone. It’s you and the disease connected and suspended without a safety net.

It doesn’t matter whether you have CF or you’re the parent of a CF child. At some point, you have a moment when you find yourself out there, above the street, deep in thought about your predicament. What can I do? What do I do?  The decision rests squarely on your shoulders.

But there is a deeper connection of tightrope walking to CF. It’s that moment when you look down and rediscover the true situation you face. You remember that you spend three hours of your day doing treatments and coughing up mucus that makes others jump back in disgust, and you take more drugs in one month than most take in a lifetime. Or, when you arrive at your hospital floor, they welcome you by name.

Some days, it is best not to look down at the street below. You can’t turn back, and looking forward doesn’t help either. The wire is long and platform ahead shrouded in fog. Surprises, wind, and close calls line the way. Your past experiences play back in your head, especially the ones that do not help.

How did I get here? Is this really my life? What do I do?

So, what do you do? Yes, you can take one step forward at a time. We all do that. However, there is another choice.

This is where Petit’s actions on the tightrope over New York City provide a possible course of action – lie down on the wire and look up. That is exactly what he did while suspended above the streets of NYC. He looked up, not down – the opposite of one’s instinct at those heights. And that is the true connection of the tightrope walker to living with CF – sometimes it’s best to live in the moment and not worry about what’s below, behind or in front of us. Block it all out and look up at the sky.

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Monday Musings – Looking back in the future

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Someone once thought it was a good idea to hire me as a junior high English/literature teacher. LOL. I still can’t believe it but I thank them for their trust.

The good news is that I don’t think I harmed any young minds. I thought I was great teacher.  Now, in hindsight, I’d say I was good at best with potential. Not great.

I enjoyed teaching, but gave it up because of the parents and pay. The kids were great and getting paid to discuss language was pretty cool. However, dealing with some parents reminded me too much of my “eating sh** days” in retail sales. Add that to the small paycheck and I gave it up.

During my days teaching I made exactly one comment I thought was interesting – one that is also relevant to cystic fibrosis.

Here it is: What is happening in the present day that we will regret in the future? Past examples: slavery, the red scare and the internment of Japanese. How did these happen?

And that’s my question today: When we look back years from now, and hopefully we’ll all be alive to do just that, what will we regret about cystic fibrosis in the future? The fact we lost so many before the cure was found comes immediately to mind.

Other thoughts: Why didn’t scientists know sooner that cruciferous vegetables held those secrets? Why did we bother taking a certain medicine?

Or will be there be no regrets in the future?

That’s what I’m thinking about tonight. What do you think?

Letter to my daughter – 4/11/10

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I know that if I spent the last 47 years staring at the clock, second after second, minute after minute, hour after hour, that each day would have been the same identical measurement of time.  But it didn’t feel that way.

It feels like I took a deep breath when I was 20 and exhaled some time today, or tomorrow or the next day. I wonder where time went and if I used it wisely.  And I know I didn’t.

My number one regret tonight, at this very moment in time, is that I filled my brain with crap and things I wish I hadn’t done.  Only now do I realize that my brain was my receptacle of time with a finite amount of storage.  It can only hold so much in the time that you rent it; I filled it with bad things.  Not all the time.  But more than I would have liked.

I wish I could exchange the junk, such watching episodes of Beverly Hills 90210 and Melrose Place,  for better stuff, like really playing the guitar well. I wish I hadn’t done some of the things I did, especially my actions and words that hurt other people.

That’s what I want to share with you tonight: Be choosy about what you put in your head.

That doesn’t mean you can’t have fun or laugh or put silly things in your mind – they are important, too.  Just be careful of putting too much corn syrup up there. Always ask yourself: Is there something better I could be doing right now that will make me happier later in life.

Think longterm, which is something I could not do. I blamed the CF, but it was just me being weak.  I feel like I’m asking you to sacrifice.  I’m not.  Just be choosy, that’s all.  Be choosy. Your brain records time.  And one day you will play back that time in your head.  And you’ll have to live with everything there. There are no do-overs.

Time, luck and the future?

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Two subjects fascinate me: time and luck.  I should probably thank cystic fibrosis for this obsession.  I don’t think a day goes by, or has gone by, when I haven’t thought about time or the luck that has helped me live so long with cystic fibrosis.

However, I repeat, however, I’m getting a little tired of hearing how you have “live in the moment,” as if today is your last day.  It’s not that I completely disagree with that thought.  I don’t.  Unfortunately, the idea can also result in exactly the opposite of what you’re trying to achieve in making the most out of your time – you can end up wasting what you do have.

Example: When I was in my teens and early 20s I lived with the expectation that I wasn’t going to live very long so what did it matter what I did.  And, most importantly, why plan for the future?  So, I lived in the moment.  Yet something went wrong – I ended up living a lot longer than I’d planned.  I’d never even thought of what it might be like to be 30 or 40 or 50.  Probably not uncommon for that age in general, but amplified by cystic fibrosis, it was a bad way to live.

I lost most of that time when I lived in the moment and did what I wanted, watched TV, worked, worked out, went to movies.  I look back on that time and think of all the things I could have been doing had I thought I might live longer and how the future would have been so much easier had I prepared better.

No one’s fault but my own.

I ended up playing catch up and going to college later in life.  Best thing I ever did and it improved my future.  The hard work and sacrifice of “living each day like it was my last” created a more positive, lasting result.

I still think of those lost years.

Yes, enjoy each day, live each day like it’s your last.  However, keep an eye on the horizon because the future, well, it’s coming one way or another and it’s best to be prepared.