On Letting Go, and Letting It Go

Posted on October 5, 2012 by Mark

Twenty years ago today, my son Benjamin was born and died. I mourn him today, yet my thoughts are focused elsewhere. My friend Mark Irons passed away early this morning from complications related to Cystic Fibrosis.

I’ve already posted some memories of Mark, but his passing has made me think more deeply about his life, death, and impact on others, as well as life in general. I’m sure that somewhere he’s smiling that he’s still making me think.

I am in no way a country music fan (and, indeed, some country music fans may disavow the song as “crossover”), but there’s a song by Tim McGraw called “Live Like You Were Dying.” The song was written to honor his father, former Mets and Phillies relief pitcher Tug McGraw, who died in 2004 from a brain tumor. I sometimes use the song to try to prod myself to remember that there’s no time like the present. Mark didn’t need that. He did that every day. Knowing that each day was precious helped him to be more alive than everybody else.

I find myself regretting not spending more time talking with Mark and learning from him. I can see him, as if he lived in ancient times, standing in a clearing on a hilltop, sharing his wisdom with transfixed students sitting as his feet. I feel awful for allowing us to fall out of touch with one another over the years, despite the fact that we thought of him often.
That gap in contact is truly my loss.

As the end neared, Mark even made sure to reach out to many who hadn’t contacted him in recent years to let them know that he was going to be OK and they shouldn’t worry about him. Even in his last days, he wanted to make sure everyone else was OK and that they didn’t feel regret at not having been in touch for a while. His concern about the those he cared about was at the core of his being. In my case, I’m extremely grateful that we were able to visit Mark in late August to see him one last time.

I was thinking about Mark donating his body to CF research and wondered what they could learn from the body of a man who lived for 46 years when his life expectancy at birth was 10 years. Was it how he ate? An unusual balance in his body chemistry? And then I came to the conclusion that Mark’s relatively long life was probably not due to anything physical, but more a mental/emotional/spiritual thing.

Here’s my theory: So many people “fight” diseases. Fighting is always messy and exhausts the participants. Mark didn’t fight CF. He embraced it, accepted it as part of his being, accepted the limitations as part of what his life was, and moved on. In doing so, it released much of the pressure, and wore him down less. I liken it to how hurricanes snap oak tree trunks, but palm trees–which bend in the wind instead of remaining rigid–survive the onslaught. Did Mark survive so long because he simply accepted the CF as part of life and didn’t rage against it?

I think there are messages in there for all of us. There will be obstacles that rise up in our path, some more severe or dangerous than others. If we bend with it like the palm instead of standing fast like the oak, perhaps we can more easily weather the storm. And even though we don’t have to be dying ourselves, there’s no reason not to live like it.

Be curious. Explore. Discover. Thirst for knowledge.

Do something spontaneous. Have an adventure.

Create. Think deeply.

Share what you believe. Follow what you believe.

Help others. Have an impact on the world.

LIVE.

 

Postscript:

On Mark’s website, he has a page about death. Amid posting his advanced care directives and musing about death, euthanasia, and what to do with his body when he passes, Mark notes “As for memorial services, gatherings, wakes, or stones, do what you need. I’d prefer a party, but there’s no need to please me.” Mark was an avid kite flyer. I think that maybe I’ll go fly a kite this weekend. Maybe we’ll even make a party of it.

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A Beautiful Life

Posted on October 2, 2012 by Mark

This one’s a bit long, so please bear with me. Our friend Mark Irons is nearing the end of his amazing journey on this Earth, and I need to write a bit while he’s still here.

Hope cried while writing her post on Mark’s CaringBridge site, and I got a bit weepy while writing this, but it’s all good. While Mark’s current condition is lamentable, it’s still a gift that it’s happening now, at age 46, instead of his original projected lifespan of 10. I shudder to think what my life would have been like without knowing him.

Mark IronsI first met Mark through Hope, who wanted me to meet her friend living down the hall on State Quad at SUNY Albany. Mark was clean-shaven and had short hair at the time, which I’m sure seems odd to those who didn’t meet him until after he grew his hair and beard out. The first thing that I noticed when we walked into his room was that Mark had a hand coming out of his wall. Really. There was a plaster sculpture of a hand that appeared to be growing out of his wall. Very cool. Then Hope showed me how he was her “Mark doll.” He would stand there and she would pose him like a bendy figure. It was then that I realized that Mark was a very patient person, and that I also realized that I was glad that she had him because I wouldn’t stand for being a “Mark doll.” I’m not sure when I found out that he had Cystic Fibrosis, but it was very shortly after I met him.

Mark and I were fellow computer geeks, but he was much deeper into it and much more intelligent that I. I couldn’t begin to comprehend the fractal geometry and artwork that he was exploring. Yet he was always patient when he tried to explain it. We shared a love of science fiction, but I couldn’t match his depth of knowledge and understanding of subtext.

Hope and I spent a lot of time with Mark over the years at SUNY and for years afterward (Hope much more than I). Mark was even the diversion for Hope’s surprise 25th birthday party. We had successfully convinced Hope that she had figured out that her surprise was going to be celebrating at a local upscale hotel’s New Year’s Eve party on her birthday (she’s a New Year’s Eve baby). She had no clue that the real surprise was a big party at our house the night before, so that we could count down to the beginning of her birthday for a change. Mark was assigned to keep Hope busy while we decorated the house, got everyone’s cars parked a distance away, and got all of the out-of-town guests in. He convinced her that he needed to go shopping for something, and he kept her out for hours. And hours. We were ready and waiting, with lots of food and music and entertainment ready to go, and he got her to go to dinner at Friendly’s for even longer. He just didn’t want us to still be getting ready when they got back. (We didn’t have cell phones back in 1990 to check in.) But they did come back, and the party was great. Hope remembers wondering what was taking so long during the entire outing, even though she enjoyed spending time with Mark.

Mark didn’t attend our wedding, though he didn’t give a reason. A couple of years later, he told us that he needed to have a conversation with us, and that it included the reason why he didn’t attend the wedding. We thought that maybe the cystic fibrosis had gotten worse and that he was approaching the end, or some other earth-shattering calamity. Over dinner, we were talking about some awkward situation or another, and he said “that’s the kind of reaction I usually get from people when I tell them I’m gay.” Hope & I continued eating and talking, then we realized that Mark was just staring at us. “Ohmygod. Is THAT what you were so afraid to talk to us about? Really?” It turns out that he had realized that he was gay but was uncomfortable about being closeted and didn’t think he’d be comfortable at our celebration. He didn’t want to create discomfort at our event because of his own discomfort. After we disabused him of the notion, we had a very good conversation about how he realized that he was gay, how he felt about it, and what effect that was having on his life. He seemed more relaxed that he had in a long time. We were so glad that he was able to open up again.

Mark began to really thrive and become more HIMSELF. He was really more at home in his own skin that anyone I had met, especially someone whose interests were largely out of the mainstream. Mark was a deep thinker. He really thirsted for meaning in everything. Probably because of the cystic fibrosis, and the fact that he was aware of his own mortality and the value of every day he was living, he seemed to get more out of each day than anybody else. His questing thirst for knowledge was amazing. He was always trying to learn more about something, on a variety of diverse topics. Mark was consciously thoughtful and caring, and was always willing to help people.

After he grew his hair and beard out, there were many jokes that played on Mark’s resemblance to Jesus, with his slight build (due to the effects of the CF), long hair, long beard, and angular features. There was the time that someone seeing Mark while walking down the street instinctively crossed themselves. Or the suggestion that he buy one of the T-shirts being sold at the time with the image from the Shroud of Turin on it, then get lettering put on the back saying “I died for your sins and all I got was this lousy T-shirt.” One year, at our annual Wayward Friends Thanksgiving gathering at our house, we realized that there were 13 of us, and we had Mark in all of his Jesus-appearanced glory. No sooner had someone quoted Mel Brooks’ “OK, everybody that wants to be in the picture, get on THAT side of the table,” than we all set up the Last Supper image. (Of course, there are only 12 in the picture, since John’s camera didn’t have a timer.)

The Last Supper, Wayward Friends style

 

Yes, I was fuzzier back then, and colored lenses were in. The round tray wasn’t as shiny as hoped in the photo, but you get the idea….

When our friends Ellen and Brian’s wedding day turned out to be largely not what they wanted (for reasons that would be way too long to get into here), Hope and I hatched the idea of marrying them again in our back yard–Wayward Friends style. The yard was decorated, the wedding processional was the theme from Star Trek, the groom was dragged to his place by his brothers, and Mark served as co-officiant, in a black leather jacket in the middle of the summer, with a bandanna and sunglasses. (While he kept saying that he wasn’t hot in the jacket when we asked if he was OK, he later confessed that he got heat stroke that day.) The “service” was a series of jokes largely based upon Monty Python and the Holy Grail. Mark’s reading from the “Book of Matrimony” (a la the Book of Armaments) about the feasting “on lambs, and sloths, and ocelots, and orangutans, and fruit bats…” was wonderfully memorable, as was his walking down the aisle blowing bubbles with a little bubble wand.

Unfortunately, many of our memorable photos of Mark are currently buried in our attic, and so are beyond my ability to share them at this time.

When Mark moved away, we missed him a great deal, though we were happy that he was following his heart and going to live with the man that he loved. It also gave me the opportunity to get a feel for people who were potential new friends by seeing how they reacted when I talked about my friend who had “moved to Tennessee to live with a man named Goat and a goat named Rasputin.” Those with trouble adjusting to the concept never seemed to make the cut.

We always worried about Mark living in the back woods, where medical help might be difficult, but Mark was hardier and fitter than most of us despite the CF, and did just fine there. And when he moved to Oregon and spent his early time there living in Glacier’s yurt? No worries. Mark was fine there.

It was harder to keep in touch with him living so far away, and with our lives becoming more complicated back home, but we thought of him often and always hoped that he was doing well. We were able to see him during a visit to California back in 2001, when he came down from Oregon during our trip while we visited with Beth and Eric, and it was wonderful to spend time with him again. We didn’t see him again until this August, when our original plans to visit him in Corvallis were derailed by him catching a cold and ending up back in the hospital about a week before we were due to go out.

Mark contacted us and apologized for disappointing us, but we told him that we didn’t really care where we got to see him, as long as we got to spend time together. Hope, Josh, and I changed our hotel from Corvallis to Portland to make it easier to get to the hospital, and headed on out. While we didn’t get to explore Oregon with Mark as we had hoped, being able to spend those precious hours with him in the hospital were priceless. It felt just like old times as we fell back into our familiar conversational patterns, and even Josh was able to fall right in as well. We brought him a T-shirt from our visit to Powell’s to give him more of a selection of what to wear, and a poster of the stars of the night sky from the Oregon Museum of Science & Industry so he could get a look at the stars even if it was foggy outside the window of his hospital room.

There was so much that we talked about, and yet there was so much more to say. Even though he appeared to be improving, and indeed he went home from the hospital–albeit briefly–after we left, we inwardly knew that it would most likely be the last time that we saw him.

It’s kind of hard to sum up someone that you’ve known for over 28 years, even when you really didn’t see much of him after the first decade or so, but Mark was a very unique individual. And I stress the word individual. He was fiercely himself (and continues to be, as of this writing, though for how much longer I’m not sure), and was himself and self-aware in ways that many who live to twice his age could never hope to be. Again, Mark was able to–despite his fragility–be stronger than everybody around him.

I’ve rambled on far longer than I planned, but it’s late at night and my brain is running unchecked. I’ll wrap it up now.

For those reading this from my regular blog feed that don’t know Mark, I encourage you to find out more about him by reading his CaringBridge site, his brief autobiography on his old website (and then explore his writings there), and a tribute to him from our friend Beth.

Lars, I know that you’re reading all of these posts to Mark, and I’m very glad that you’re there for him. It was good to meet you while we were out in Oregon, and to know that you would be there to help Mark through this difficult time. Thank you for being a good friend to Mark. And Mark, thank you for being you. You tremendously enriched our lives with your presence, and have been a shining example of what people could be, despite limitations unfairly placed upon them. We miss you, and we love you.

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Thankful

Posted on November 17, 2011 by Mark

Welcome back to my blog. I say that to me as well as to you, since I have been neglecting the poor thing. I hope that this is the resumption of a healthy relationship.

In any case, I want to take a different tack for World Prematurity Day today. So often we talk about the problems of premature birth, and struggles in the NICU, the need for more research and better medicines, and the fight to keep fragile babies alive. Today, however, I want to talk about what happens when the tiny preemie makes it and manages to grow and thrive.

Sometimes we get so caught up in making it through the day-to-day that we forget about the big picture. The Kid was sick both the week before his Bar Mitzvah and the week after. By some miracle, he was mostly healthy for the weekend.

My wife and I were going crazy trying to lasso all of the myriad details into submission, and we still were not done by the morning of the Bar Mitzvah. We worked through the night before the Bar Mitzvah, neglecting to take the time to write the speeches that we’d give to The Kid during the service. My wife was able to write something quickly that morning before the service, but I was so busy wrangling parents and friends for the walkthrough that I didn’t really think much about mine.

When the point in the service came for us to deliver our speeches before giving him his new talit, I had to make it up on the spot. Thankfully, I often do some of my best work in those situations, and this was one of those. Here (transcribed from the video) is what I said to my wonderful preemie at his Bar Mitzvah:

When we lost your brother, we were completely lost. We did not see brightness ahead of us. And then six years later, we were gifted with a miracle. And you have been a miracle your entire life, whether it be your singing and dancing around the house, your writing songs, your strength of will, your strength of character. To know what’s right — and what’s right for you — and not letting anybody shake you from knowing what you want to do and what you feel is right are strengths that anybody can admire, because you are one of the most amazing people that I have ever met.

And I am so proud of you. I am so proud that you are my son, and if I never do anything else in my life than give the world you, I’ve left the world a better place. I love you.

He is an amazing young man, and he has an amazing sense of what is right.

His Bar Mitzvah project was to raise money for the March of Dimes by writing a song for the occasion and giving a CD with that song and three others to anyone who donated at least $5 to his fundraising campaign. I’m extremely proud to say that he’s raised over $1,000 in this initiative, with more still coming in.

He did an awesome job with the music, but asked for some assistance with lyrics. I helped out late one night when struck with inspiration, as I was with the Bar Mitzvah speech a couple of weeks later. Together, we made some tweaks to the wording to help it fit more closely to his vision for the song, so I credit both of us with the lyrics. It is so awesome to hear him play and sing this. The CD also includes an instrumental version of the song, a four-hand sonatina that he wrote, and two other pieces that he’s written as part of a musical that he’s working on.

Today, I’ll leave you with the lyrics and the thoughts that I am so thankful and grateful that this miracle has become part of my life and my wife’s life, and that the March of Dimes was able to develop treatment, therapies, and medical regimens that kept him alive. Enjoy:

Never

(words by M. Goldhaber, J. Goldhaber; music by J. Goldhaber)

I’m a living miracle,
I nearly wasn’t here.
Like my brother Ben before me,
I was born too soon, I fear.
Preemie fears have always been
We’d never make it through.
“Never” is a word that frightens
Preemie parents too.

“Never” gonna breathe
“Never” gonna see
“Never” gonna make it
“Never” gonna be
“Never” gonna grow
“Never” gonna live
Never will forget
And I’m gonna help to give

He was born at 22 weeks,
I was born at 28.
I’m here to tell our tale, though
That it’s not just due to fate.
Many years ago, my chances
Wouldn’t have been worth two cents
But the March of Dimes was working
And that’s made the difference.

“Never” gonna breathe
“Never” gonna see
“Never” gonna make it
“Never” gonna be
“Never” gonna grow
“Never” gonna live
Never will forget
And I’m gonna help to give

While preemies still have it tough
And it often takes a lot
To keep us going in the face
Of the issues that we’ve got.
The March of Dimes has led the fight
To help give us a chance
And now I’m writing music
And I can sing and dance.

<instrumental chorus>

So I bring my songs to you
To help the March of Dimes.
Let’s give more kids a fighting chance
To live productive lives.
Let’s change the preemie focus
And turn the words around
Instead of “never” being tough
Let’s give it a new sound!

Never giving up!
Never lose a beat!
Never let it stop us!
Never cry defeat!
Nothing’s gonna stop me!
My mission here is key:
Help the March of Dimes
Help others just like me!

Never giving up!
Never lose a beat!
Never let it stop us!
Never cry defeat!

But since they’re here,
You’re hearing this song.

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Tonight, I’m proud to be a New Yorker

Posted on June 25, 2011 by Mark

Tonight, the New York State Senate passed the Marriage Equality Act by a 33-29 margin.

Republican Senators Stephen Saland, Mark Grisanti, Roy McDonald and Jim Alesi crossed party lines to vote “yes,” more than offsetting Democratic Senator Ruben Diaz’s “no” vote. I’m thrilled that my state is now #6 to allow same-sex marriages. I suppose at this point, I should put into writing what I’ve been saying for years on this topic.

As a way of moving into this, I’ll note that the act was passed after being amended to allow for religious exemptions, basically stating that civil actions could not be brought against clergy who refused to perform religious services for same-sex marriages. And that’s as it should be. The separation of church and state says that the state can’t tell religions what they can and can’t do.

The big problem in all of this is that the law and religion use the same term. Therefore, when the law defines “marriage,” it takes on all of the overtones of the religious definition(s) of “marriage.” If the law had used a different term all along, we might not have had such a tug-of-war for all of these years. While there would still have been those opposed, the use of the emotionally-charged and religiously-linked word “marriage” pushed many hot buttons. If, years ago, government had made a decision to have all legal references instead use the term “civil partnerships” or “domestic partnerships,” there would have been much less rancor. “Domestic partnership” would be a legal term and “marriage” would be a religious term. Everyone would have a domestic partnership whether or not their religion would marry them. However, because the law used the word “marriage” all along, to change the legal definition to use “domestic partnership” for all would have raised much resistance from those who didn’t want to lose the use of “marriage” as a legal term. It was too late.

Now, after enough time has passed that the majority of Americans—and the majority of New Yorkers—understand that homosexuality is not a choice and that all people deserve the same rights, we have taken that step in my state to acknowledge the fact and to allow some of the disenfranchised to enjoy the same comforts and protections of the institution of marriage that the rest of us already have.

To those who claim that the purpose of marriage is to procreate, I say that I know a number of heterosexual couples who have no intention of reproducing. Does that mean that they should not be allowed to marry? Should all marriages of couples who find that they are unable to have children be automatically annulled as a rule? I don’t think so. Does it mean that two parents of the same sex can’t be good parents, either of children that they previously had with a member of the opposite sex or of children that they adopt? I know several people who would serve as great examples to the contrary.

To those who claim that allowing same-sex couples to marry makes a mockery of the institution of marriage, what do you say about those who marry and divorce repeatedly? Those celebrities whose marriages are measured in days? And how do you justify saying that a homosexual couple that has been together for 20 years makes more of a mockery of marriage than those with “disposable marriages”?

If you’ve been reading my blog for a while (and I know that I have been lax in updating lately), you know that my Uncle Fred was an activist for gay rights for decades. I feel sad that he passed away less than a year before the state of his birth legalized same-sex marriage. Fred had survived more than one long-term partner, despite being HIV positive for decades. He lost one to cancer. One died of a severe asthma attack. But I’m sure that all of them are having a party somewhere celebrating this historic legislation.

New York is the sixth state (plus the District of Columbia) to legalize marriage. Six down, forty-four to go. Let’s see who’s next. In the meantime, New York did me proud today.

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Why I walk every year to raise money for the March of Dimes

Posted on April 20, 2011 by Mark

2011 is the sixth year that I’m walking to raise money for the March of Dimes. I’ve gotten a very late start this year due to the Makena controversy, which left the March of Dimes scrambling to return to their values after a bad decision that shook my confidence in the organization. I’ve written quite a bit about the role of the March of Dimes in the Makena controversy.

In the end, though, after a number of communications with the March of Dimes Senior VP for Strategic Marketing & Communications, I think that they are back on track, and I don’t know that there’s another organization out there that provides as much support for research and development of ways to reduce prematurity and treat complications in those who are born too soon. That doesn’t mean that I won’t be watching closely to make sure that there are no further major gaffes, but I think that continuing my support (while maintaining scrutiny) at this time is the most productive direction for my fundraising.

So why do I walk?

I walk for my two sons, one who made it and one who didn’t. I walk so that other people won’t have to go through what we’ve gone through.

Benjamin was born at a “women’s hospital” that had no clue how to handle our premature labor situation and did not seek to transfer my wife to a larger hospital with a Neonatal Intensive Care Unit (NICU). They were so unaware that they didn’t even have a way to communicate our loss to the staff at the nurses’ station outside the LDR room, who wished us “congratulations” as my wife was wheeled out. They looked stunned when I replied “no” to them. Benjamin was born at 22 weeks gestation weighing less than a pound. He lived for five minutes. He would’ve turned eighteen last October. There’s still a hole in my heart from losing him that will never go away.

The hospital has undergone a management change since then, and now reportedly does have a serviceable NICU. I’d like to think that our experience there had some influence on that improvement.

My second son (“The Kid”) was born at a hospital well-versed in caring for moms going into labor prematurely and babies born way too soon. My wife was admitted and under direct care for weeks before delivery. Medications whose development was supported by March of Dimes were administered during that time to help The Kid’s lungs develop. When he was born, at 28 weeks gestation, he weighed 2 pounds, 1.4 ounces, and went to the NICU. More medications supported by the March of Dimes helped him survive and develop. He didn’t leave the hospital for 10 ½ weeks, and had to go back the next week for minor surgery. He came home on a heart monitor, which he wore until he was six months old, and we’ve had to watch his health closely ever since.

The Kid is now 12 years old and is a caring, intelligent, talented and charismatic kid, thanks in part to the March of Dimes (and the great staff at St. Peter’s Hospital). He’s not only academically gifted, but he’s also quite talented at dancing, playing musical instruments, writing music, acting and performing arts in general. He wants to design theme parks when he grows up, and I don’t doubt that he’ll do it.

But my sons are only two of the millions of stories to be told about premature babies. Thousands are born every day. Some are lucky, like The Kid. Some are not. Many who survive still suffer from many medical conditions and need a great deal of help to live what even approximates normal lives.

I walk for the March of Dimes because I want to help prevent premature births, and to help support cures and care for the afflictions of those that are born prematurely. Parents should take their children home from the hospital, not to the cemetery. And when they get them home, they should be able to live without lingering medical conditions.

Every year, I am dumbfounded by the support from my friends, family, co-workers, and (especially) my MousePlanet family. The people who read the stories I write and listen to the podcasts I record have been stupendously generous in supporting my fundraising to support this cause.

Last year, thanks to your contributions, I was a top walker in Northeastern New York for the third year in a row. More than one-third of that money came from donations of $50 or less. Nearly one-quarter came from donations of $25 or less.

Every dollar counts. Please give generously, and help the March of Dimes to give every baby a fighting chance. Go to my fundraising page and support this worthy cause.

Thank you so much for your support.

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