Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Family and Friends”

When Extremes Affect Health


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This was the message that I received on my cell phone this morning from my mother in Pennsylvania.  I currently live more than a thousand miles south, where it too gets cold, but not to this extreme.  It does not make it feel any better to me having acclimated to my new climate temperatures, it is cold.  But I do know what 0 degrees feels like.

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There was a time that I loved the cold weather, tons of snow, which for some reason traditionally fall around this time of year, nearly every year.  At one time, I was a great skier, unable to wait for the next season to roll around.  Of course, there were the hours upon hours spent sledding, and yes, playing football with the neighborhood kids in two feet of snow.

And of course, there is nothing as beautiful in both sound and beauty as fresh falling snow.

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I had always dreamed of living somewhere, that snow was a dominant weather characteristic because I was always more comfortable with cold, being able to keep warm, as opposed to being in the heat, trying to keep cool.

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I could enjoy the warmer weather, whether it would be in the mountains, or maybe a brief stay on the beach, but it was never an environment that I thought I could ever stay in.

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But things changed in a big way following my open heart surgery in 2008.  Just like my cardiac symptoms, I had pulmonary issues as well, for a long time, I just simply ignored them.  But when it was discovered that my cancer treatments for Hodgkin’s Lymphoma had caused a life threatening situation with my heart, it was not soon after that more testing would reveal the many other late developing side effects that had become a part of my life.  I have written about my one of my cardiac issues in prior posts.  Today I am going to talk about pulmonary.

I was diagnosed with Restrictive Lung Disease, which for easiest understanding, it means exactly what it spells.  The residuals of my treatments have left me with my lungs being only at 75% as confirmed with extensive pulmonary function testing performed by one of the top hospitals in the country, Memorial Sloan Kettering Cancer Center.  My results are not posted below, but the pictures show what the testing results would look like.

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Until my cardiac episode had been diagnosed and treated, I was totally ignorant of what was happening to my body since my days with treatments.  I was no longer being followed up by doctors once I hit my five year mark.  But looking back, symptoms existed long before my surgery.

One of the most obvious symptoms I had was dyspnea, difficulty breathing or what some would consider shortness of breath (also a cardiac symptom by the way).  I often had what was a dry cough, which occasionally resulted in blood with anything I coughed up.  This was often treated as an infection prior to knowing I had RLD.  Most often times I felt as if it could possibly be compared to having an asthma attack, only I  had never had asthma before, and inhalers were used initially to treat me, but of course provided no relief.

There are two things that cause my RLD to act up to levels where it can actually cause a panic attack with me.  It is one thing to have to try and catch your breath, but when you cannot, and you feel your heart ready to jump out of your chest, your body and mind starts to react in ways that you cannot control.  But exercise and extreme weather are both known triggers to episodes of my lung problems.

I avoid all strenuous exercise because this is a guarantee to trigger an episode.  Exercise for me is confined to walking and that is it.  And I must walk on a flat surface.  Walking up a flight of stairs will leave me gasping for air.  I cannot even walk with a fast pace without becoming short of breath.

But extreme weather is my main culprit.  I spent a lot of time walking from the parking garage to the building I worked in which meant I was often dealing with high heat and humidity during the summer months, and brutal cold and winds during the winter.  So, as you can see, the only time I would be okay, is basically if I stayed indoors, where the climate was controlled constantly.  But that was not realistic.

A typical day for me, regardless of winter or summer would go as follows.  I would get into my car, drive to work and park in the garage.  I would walk to my building which took about five minutes.  But by the time I would get there, in most cases, my lungs would have shut down on me.  Because no medication would work, I would spend the next half hour, breathing the indoor climate controlled air to reverse what my lungs had been treated to outdoors.  On most occasions, this would work, but on a rare occurrence, the episode could last for hours.  The last severe episode I had resulted in me being transported to the emergency room for a cardiac episode.

So, in the extreme heat and humidity, I would spend nearly all of my time indoors, in air conditioning.  There was no relief for me outside.  The sad thing was that I owned an inground swimming pool that I could never enjoy during heat waves, because as long as I was breathing the hot and humid air, it was getting into my lungs.

In the winter, and sometimes in the cooler autumn weather, I was often seen wearing a scarf around my nose and mouth to cut down on the cooler air entering my lungs.  Whereas with the heat and humidity causing it to be difficult to breath, with the cold and wind also came added pain, extreme pain.  I often received odd looks from passersby seeing me wearing a scarf or turtle neck covering my mouth and nose once the temperatures got into the lower 50 degree range.  But it reduced the amount of air I was exposed to until I could get into the building, and yes, try to settle my lungs down.  So here is someone who loves snow, loves to ski, with two beautiful little girls who love to spend time in the snow… and now tries to avoid it.

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My heart goes out to everyone up north right now, dealing with the extreme cold temperatures, and ridiculous amounts of snow.  My daughters enjoy showing me pictures of the snow what used to be our yard.  And just as when I was a child, my daughters definitely enjoy the snow.

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But the truth be told at this point, the only way that I can enjoy that weather would be to become a window-licker, simply looking at the beautiful scenery from the inside of a home.  I used to love the outdoor silence that came with each snowfall.  I could always tell when snow was coming because one of the few things that Pollo, my golden retriever could enjoy, would stick his muzzle in the air, and actually be able to “smell” snow coming.

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Which makes it even more odd that I could actually survive in the climate that I currently live in now.  I live in the deep south, where heat and humidity are more than common.  But I passed the climate test with my lungs this summer keeping any discomfort to a minimum because I kept the exposure to a minimum without completely isolating myself.  I spend the majority of my time indoors, with my outdoor exposure limited while not being restricted.  I avoid the hottest times of the days, and am always able to get inside to air conditioning if I feel a pulmonary episode coming on.  But because the exposure in length of time is more controlled, so is the episode.

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And there are other factors that can aggravate my RLD (stress is a major factor discussed in other posts), and sometimes it is a combination of several.  But doing whatever I must, to keep these factors from wreaking havoc on my life, must be done.  And so far it has been working for me.

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And I will have more memories with my daughters in the white of winter during at least one of our visits with each other every year (I will be watching from the lodge), while the rest will be with me here in my southern home.

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Ringo Starr did it.  Cheryl Crow and Kid Rock did it.  Def Leppard rocked their career into legendary status with it.  But perhaps Nickelback with lead singer Chad Kroeger did it best, or at least wrote the best lyrics.

“Look at this photograph every time I do it makes me laugh
How did our eyes get so red?  And what the hell is on Joey’s head?
And this is where I grew up I think the present owner fixed it up
I never knew we’d ever went without the second floor is hard for sneaking out

And this is where I went to school most of the time had better things to do
Criminal record says I broke in twice I must have done it half a dozen times
I wonder if it’s too late should I go back and try to graduate?
Life’s better now than it was back then if I was them I wouldn’t let me in

Every memory of looking out the back door I had the photo album spread out on my bedroom floor
It’s hard to say it, time to say it goodbye, goodbye.
Every memory of walking out the front door I found the photo of the friend that I was looking for
It’s hard to say it, time to say it goodbye, goodbye.

Remember the old arcade blew every dollar that we ever made
The cops hated us hangin’ out they say somebody went and burned it down
We used to listen to the radio and sing along with every song we know
We said someday we’d find out how it feels to sing to more than just the steering wheel

Kim’s the first girl I kissed I was so nervous that I nearly missed
She’s had a couple of kids since then I haven’t seen her since god knows when

I miss that town I miss the faces you can’t erase
You can’t replace it I miss it now I can’t believe it
So hard to stay too hard to leave it
If I could I relive those days I know the one thing that would never change”   Photograph by Nickelback

So, why I am quoting Chad Kroeger today?  Long before I filed for divorce, or even considered it, right from the day I adopted my oldest daughter, I wanted to make sure that I took enough pictures of what would eventually be both of my daughters.  There was only one flaw in my idea.  I was constantly on the other side of the lens.  But as I have published here, I was able to manage quite a few photos of the three of us.  And yes, there are probably thousands of just them either by themselves or with each other.

This weekend, I have been working on a special project.  And very soon, it became very evident of just how critical my concerns of photos with my daughter would become.

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You are looking at the three only known photographs of me with my father when I was a child.  I have checked with various relatives and these were the only ones that could be found.  The only thing I have less of than memories of my childhood with him.  I have several of us in my adult years, but that was after we re-established our relationship with each other.

My father made a conscious decision at one point following my parents decision of just how involved, or distant he was going to be with my sister and I.  It would be in my twenties before he and I would actually even begin to sit and talk with each other, and another decade or so later before our relationship would come back to the point where father and son would never be kept from each other again.  But to this day, it is not known why he made the decision that he did, and he took it to his grave.

Why am I writing about this now?  A friend of mine posted a link on her Facebook wall called “The Reason This Dad Lies To His Daughter Every Day.”

http://www.sunnyskyz.com/happy-videos/1896/The-Reason-This-Dad-Lies-To-His-Daughter-Every-Day-Will-Break-Your-Heart

It is a very touching video of a father reading a note that was written by his daughter complimenting him on the many great qualities of her father.  But clearly the father has a secret.  And later in the note, he discovers that his daughter knows the truth.  The video will leave you in tears.  I know it did me.

So here I am, in the middle of a divorce, with two young girls myself.  My estranged wife and I have very different opinions of how the kids should be told things when it comes to the divorce.  I have always been of the mindset that kids are kids, and should only have to deal with kid-level issues.  But as is evident by the three photos above, keeping things hidden from them is definitely not the answer either.  I can count at least eighteen years (not including the sporatic appearances from him) that I have no answers, no memories.

And clearly, as the video shows, and while not necessarily a video about a divorce situation, the things the father is hiding from his daughter, and there is no denying that he is trying to protect her, she would eventually discover the truth anyway.  But fortunately for him, she is mature enough to understand why.

But in discussing adult issues with children, especially divorce, care needs to be given, because at no time, can or should a child ever feel that they are the reason behind the divorce.  But clearly, there is no way that my children should ever hear anything that is going on at the present time.  And so I often find myself walking a very thin line, protecting them from what they do not need to know, while satisfying their want to know.  But I have chosen to tell them the truth when asked certain questions, and with others, give my patented response (which I used before getting divorced also), “it’s a grown-up thing…let the grown-up handle it.”

I know that I have limited time to get things taken care of before both of my daughters begin to “fill in the blanks” themselves.  But one thing that I have learned from the past, my father, is what “absence” can take away from parent and child.  So for now, I take plenty of photos every moment that I get.  I make sure that they hear my voice every day, and normally, we see each other via Facetime or Tango.  But at no point, will they ever feel forgotten or loved, as I remind them every night that I speak to them how much I love them… and how much I miss them.

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The Love Of A Sister


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Alyssa Scheidemann is an author living in Florida.  She writes on various websites and has two published books, one a children’s book, and the other a book of poems (www.alyssascheidemann.com).

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Recently, Alyssa had been asked to write an article as an alumni of her college, Florida Gulf Coast University magazine, Pinnacle.

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You see, her brother Michael, was also a student at FGCU.  I wrote a couple of posts about Michael recently on “Paul’s Heart” (see “Meet Michael”).  Alyssa’s article in Pinnacle has just been released, and so I would like to share it with you.  Below, is the entire article.

Michael Scheidemann inspired family, friends

Scholarship in his memory will do the same for others.
Alyssa Scheidemann with her brother Michael
Michael Scheidemann was a bright, loving person with a heart of gold and wisdom far beyond his years. Born with a visual impairment, he compensated with a keen sense of hearing and an amazing memory.

His life ended Jan. 6, 2014. He was 24.

My brother’s memory lives on, however, in the hearts of his family and friends and through the Michael E. Scheidemann Inspirational Scholarship Fund for Florida Gulf Coast University, established by my parents and me to help others with physical disabilities pursue their education.

As his sister – we were less than a year apart and the best of friends – and a fellow Eagle, I’d like to share with you what made my brother special.

Michael’s favorite word was “Integrity” – being honest and having strong moral principles. He was assigned the word in an elementary school show. Afterwards, he put up the sign over his bed because he believed in it so much.

He was also the family comedian. He could always make us laugh.

Mike worried about other family members, especially when we were sick or hurt. When our mother, Josephine, had a backache, he brought her a back massager. When I was in middle school, I fractured my hip when I slipped and fell on black ice as I ran to catch the school bus. Mike helped carry me home. Later, as I struggled with crutches to get around, he helped me figure out an efficient way to go up and down the stairs in our New Jersey home.

Despite his visual limitations, he loved to serve as videographer in our high school TV production class and, once in the studio, enjoyed being the director. He challenged himself in all of his academics and graduated with honors with a GPA of more than 4.0 from Barron Collier High School in Naples.

Mike loved FGCU. My mom and I drove him to campus for classes. We would all get together for lunch at Gulf Coast Town Center when our schedules allowed it. Michael and I also attended FGCU concerts together. Those were times we will always hold dear.

My father, Ernest Scheidemann, cherishes the overnight camping trips he and Mike took to the Delaware Water Gap where they would fish, sit by a campfire and hike in the mountains. What dad misses most, though, are the powerful hugs Mike liberally dispensed.

If anyone needed help, Mike was ready to step up. He organized our home offices and garages and was just as happy to help people he didn’t know. Two years ago, he worked as an intern at the Lighthouse of Collier, Inc., a nonprofit organization for people with vision loss. He taught others who had vision issues how to use computers.

Michael became sick in December 2012. Eventually the doctors figured out it was Hodgkin’s lymphoma, a cancer of the lymph nodes. Research indicated that treatment for this form of cancer had a high success rate, particularly for someone as young as he was. Michael remained tough, brave, and focused through it all, including his chemotherapy. Even before his final treatment, he declared himself a survivor. After six months of treatment, he was declared in remission. It was a happy day.

My brother taught me – and so many others – to live life to the fullest, with no regrets. A positive outlook and your best effort are what are required to face challenges and inspire others.

About a month after being declared in remission, Mike began experiencing heart complications caused by the treatment. He continued to be strong and brave, assuring the rest of us that this was just another obstacle he would overcome. But it was not to be. After fighting so hard for more than a year, he passed on that January.

Michael was a senior at the time. On May 10, I proudly accepted his bachelor’s degree in political science posthumously on his behalf at a beautiful ceremony.

It is my family’s hope that the Michael E. Scheidemann Inspirational Scholarship Fund will allow many more promising students to experience the joy of learning as Michael did and, in that way, keep Michael’s memory alive.

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