Tag: Bellevue Hospital

Resilience doesn’t mean that you don’t have pain.  It means that you survive. You make it to the next level.  Rocky Balboa (Sylvester Stallone) said in the movie ROCKY BALBOA, that the older he got the more he had to leave behind.  This example of resilience smacks us as something we all have to learn from. As we age, we’re going to lose friends, pets, and other pieces of our life and “leave them behind”.  

And still you survive.

Yesterday, I was sitting and watching “BAD MOMS” on Amazon.  It’s a cute movie. There’s a number of lines that coincide with what I was thinking.  It’s amazing how that happens, how we can “make a connection” to something at such random times.  Probably because our brains our looking for it and wanting it – perhaps even in this case – needing it.

There’s a point where the Mila Kunis character (AMY) is down and out, the kids just left and her two friends Kristen Bell (Kiki) and Kathryn Hahn (Carla) burst into her house demanding that she get up and fight.  

The connection, Kristen Bell shouts “Mom’s don’t quit, only Dad’s do” I could disagree with that while agreeing with the sentiment of not giving up – again that Resilience pops into my head.  Kathryn Hahn then goes onto explain that the reason that Mila Kunis needs to get up and fight isn’t because of an election – It’s to get up to fight for her daughter.

And that’s when the lights came on and I made the connection.  

The Mila Kunis character saw no victory in the upcoming election and that’s why she was checked out and not even bothering to get up and go.  Yet, she got up to fight for her daughter.

And this is the CORE of RESILIENCE!  Fighting for Someone.

And that’s what Samime and I do.

Everyday.

We fight for Derya – against this disease to get her better.  

This concept of resilience has the common theme of those we’ve talked to who have fought this disease.  

What quits first? The Disease or US.

 

A few people have asked me: Why did this happen to Derya and her family?

Heck, we’ve asked that question daily.  Sometimes hourly.  About our own situations.

I don’t know if I have an answer for them, the friend asking me why.  Falling back on what I know best, history, I have nothing but at best a possibility of a vague notion.

I would never suggest that I can interpret or know what God’s will is or isn’t.  I can only interpret what I know for sure beyond my own personal faith.  Personally, I think this is a path for Derya, myself and my family.  We all journey down a path, sometimes that path is filled with potholes and other times it’s “Smooth Sailing”.

What I know for sure is that history is replete with examples of injustice.   This travesty of justice, this suffering, and pain, these bad moments aren’t exclusive to Derya and the rest of us.  Nor to our own time.  Those moments of injustice, when a king has ordered an innocent to a dungeon put to death or banished.  Or worse, the perpetrator of a horrendous crime is released by some central authority, freed because they were a friend to the judge or some other wealthy patrician.

Often times in the past the evil is allowed to continue because those around do nothing.  And those who survive these times, like us and Derya, are made of “tough stuff”.  Someone has to endure.  Someone has to be the example, the lesson to learn from, the ones suffering so that others will become enraged.

However, just as in those past times, the good people who saw the injustice perpetrated became more and more upset with the abuses.  As time passed, as information spread and as the injustices perpetrated against individuals spread, so did the resentment and dissatisfaction with their Lords and Masters.  Just as Sir Thomas More stood up to the abuses of Henry VIII and faced the harsh death instituted by the evils of the King’s court, today we fight against the evils of ignorance and fear and unenlightened attitudes.

Now. Today.  Many are becoming more and more aware of the horrors of this disease. Knowledge is overcoming that ignorance, giving us a fighting chance. As we become more aware we learn of those who are perpetrating evil against the victims of this disease.

You, the good people, who fight the good fight, know of the evil as it presents itself.  Know the damage it causes.  And as you spread knowledge of this disease, it shames the evils of those doing wrong as the fictional Sheriff of Nottingham was shamed for his actions.  And while we’re not Robin Hood, we’re certainly the merry men and woman fighting the good fight.

As more people know of this disease, more people want to help.  As more people want to help, it creates a wave of change.  Keep the change coming.

A quick note about this weeks picture.  The picture is from the Cloisters in NYC.  It’s a picture of the statue of Saint Roch.  As the caption suggests, he is the patron saint of dogs and the sick.  He spent a good part of his life caring for those who needed it.  He cured those with the plague and when he became infected, he was nursed back to health by the dog that licked his wounds.  After his healing, he went onto healing others until he was arrested and thrown in jail.

He died a penniless pauper prisoner.  A man who, while jailed, still sought to help his cellmates and care for them.  A man who, despite his suffering, he still strove to do the right thing.

Couldn’t we all learn from that.  Have a St. Roch kinda good day!

I am determined.  Determined to make today better than yesterday.  Like my beautiful Derya I am greatly influenced by the music I listen to.  Often times, it can change my mood quickly or bring me to a more powerful point within the mood I’m in.  We’ve all experienced that point – the one where you make your decisions, your determination.  You re-affirm your thoughts and direction.

It’s inexplicable.  But I got to listening to Simple Man by Lynyrd Skynard.  And I reached that powerful moment.

I am determined.  I will not falter.  I will not fail.  I am struck by the Latin phrase.  INVICTUS MANEO – “I remain unconquered”

I am reminded of my late mother’s favorite poem from Tennyson.  The last lines of which go something like this:

“Made weak by time and fate, but strong in will
To strive, to seek, to find, and not to yield.”
-Ulysses

My message to you is simple: Things will be bad, they will be good.  They will be what they will be.  But in your darkest time, do not yield.

Today is about Heroes:
Our hero today is my wife Samime.  I think many of you can sympathize with what she has gone through, either because you’ve heard her stories or are going through something similar.  She, like me, has struggled and made it.  To her, I say INVICTUS MANEO.  We’ve both traveled this road together.  It’s been a tough road, a road filled with purpose and purposely filled with potholes by some.  Still, she has persevered.  When she dips, I pick her up and vice versa.

The attached picture is the woman I married.  It personifies her life.  She’s not a rule breaker as much as someone who can see dumb stupid and idiotic rules for what they are – dumb stupid and idiotic.  This picture was taken at the family waiting room as we waited for a spinal tap for Derya.  We were at the hospital of the doctor who shall not be named.  Notice the red sign on her left and what she is holding in her hands.

It’s not easy, but she has been a rock!    She’s a rebel and for good reason.  Her life has dictated – be a rebel or be destroyed.

She read everything above this before I posted this and approved it.  This is the part she hasn’t read.  She won’t speak of the tears, the sad faces, the anger and frustration that has crossed her face but it is all there.  She is good at staying strong but in a world that has worked against you, it’s impossible to not have emotions.

The goal in life is to live it.  Samime has.  She has tried to do as much as she can despite the limitations she has been put through.  Those limitations haven’t been just from the hospital that shall not be named but from life itself.  She has always from the beginning till now – struggled.

I cannot think of anyone who I would want to go through this nightmare with other than her.  Often, she is the light that gives us a vision of the future and the path we need to take.  I’d like to use the certain words to describe certain people who have hurt us – but I won’t because of the family nature of this post.

We pray everyday for guidance and strength.

I love her for more than her good looks.  Invictus Maneo!

I think Samime and I have alluded to this to some and written about it other places.  This disease messes with your mind, and I’m not talking about, in this case, the mind of the person who is sick – although that is completely correct as well.  This disease causes problems for the caregiver as well.

As Rocky said, “Life isn’t all sunshine and rainbows.”  And this is true – too true.  This is even truer today.  This disease makes us all vulnerable.  We don’t have our typical stamina, the ability to defend ourselves, the strength to persevere. Unfortunately, there are people out there who will take advantage of you and your circumstances.  It certainly has happened to us.  Others see us as weak as if we can’t or won’t fight for ourselves.  They will take advantage of this weakness and use it against you.  Use your vulnerable moments to break you or to harm you. And it’s not just your “enemies”.  I can be people or companies you trusted and valued.

I don’t think I’m teaching anyone who reads this something new.  In fact, I’m pretty sure that many of you know of a similar incident that happened to yourself.  There may not be something so obvious as a sick family member, but we’ve all had “bad times” happen to us.  It’s inevitable.  And we’ve all had people use us or take advantage of us.

The people who take advantage of us, who cast themselves as our friends and then turn on us because they suspect we are weak. These people are the ones we need to be on guard against.  As the saying goes you expect your enemies to be bad to you – not those who you trust.

Remember the rest of Rocky’s saying: “It (the world) is a very mean and nasty place… It will beat you to your knees and keep you there permanently if you let it… But it’s not about how hard you can hit, but about how hard you can get hit and keep moving forward.  How much you can take and keep moving forward…”

Over Christmas break of 2006, a freshly married James Baldini, new father of two, took his two kids to see this movie.  I grew up with Rocky, as an Italian Stallion myself from Philadelphia, my brothers and I identified with Rocky.  To me, this was a message reaching into my heart and ringing the round start bell.
Yes, today, I listen to this quote over and over again.  Because I won’t stay down.  Neither will Samime and I hope I have instilled this into both my children.  I know I have seen them BOTH suffer through things and keep moving forward.

Here’s the video segment from the movie.

It wasn’t so long ago that we were stuck in the middle of the big storm back in February of this year.  I remember it well, although I wish I could forget it.  The power had gone out and we had no water and no heat, and it lasted a total of nine days.

As you know Derya’s condition and the medication she needs to take it in order to get better compromises her immune system.  As a consequence, she is far more vulnerable to sickness than your average person.  And here we were with No Power, No Running Water, and No Heat – and the temperature outside was dropping below thirty degrees.

I remember watching the movie Signs.  The Mel Gibson character (Rev. Graham Hess) and the Joaquin Phoenix character (Merrill Hess) were sitting watching the “lights” over Mexico City on the television.  They have this discussion about coincidences and God.  What it boils down to was that there are two types of people.  Those who believe that no matter what – they are never alone – evidence that there is a God and the other group lives in the fear that there is no God and thus everything that happens is a 50/50 chance of it being good or bad.

Now, I’m not here arguing for God or against, your point of view, or mine.  What I do know is this.  I mention this movie because on the first day of the storm, Samime was headed down the road and she bumped into one of our neighbors – Mark.  Now Mark and his wife, Deb haven’t been around much this year and not because of the weather.  They’ve been great neighbors since they moved in and a delight to have next door.   Like most of our neighbors, they’ve heard of Derya’s situation and feel great pain over what has happened to her.  In many ways, both have been heroes in helping us out – and especially on this day – they were life savers! As to this day suffice to say that Mark’s only reason for being on the road that day was because he came to check on things up here.

That first day of the storm Mark saw Samime.  He stopped and asked Samime how it was going.  She relayed the situation and how she was worried about tonight and the drop in the temperature.  He, out of the kindness of his heart, and the joy of living, offered up the generator he had sitting in his garage, for us to use until the power came back.  What a miracle.  It was, as mentioned before, a lifesaver of a move.

The generator got us through the next couple of days, running well enough to keep heaters going, and we even were able to run a couple of lights and charge our phones.

I don’t want the reader to feel as if I’m pushing our personal belief system on you.  All I know is this, just as Joaquin Phoenix explained when he described how he had avoided kissing Amanda McKinney when she was about to puke – We feel the same – “I’m a miracle man.”  I’m pretty sure I know that Samime would agree with me.

Don’t worry, the story of this winter storm isn’t over.  There are other heroes in this story that haven’t been mentioned.

Until next time….

 

Here’s the link to the video segment mentioned above:

There’s a movie called “What Dreams May Come.”  It stars Robin Williams and Annabelle Sciorra.  It’s a sad story of faith and love.  I remember the first time I saw the movie.  The tragic story involves the loss of the couples two kids and the horror connected with the mother Annabelle Sciorra then losing her husband in another tragic accident.  I know, it sounds depressing.  But in the end, it’s not really.  I don’t want to ruin it (even though the movie is twenty years old this year).  There’s a scene at the end that has perplexed me for nearly fifteen years and was only answered recently.

The scene is Annabelle – Annie, the wife of Robin Williams, Chris.  The Robin Williams character goes searching for Annie, his lost love.  He finds her in Hell.  If you stay in Hell long enough, you become part of it, so he’s on a time limit.  His guide, tells Chris (Robin Williams) to say his goodbyes to Annie (Annabelle Sciorra) and they (the guide and Chris) will leave together.  Chris (Robin Williams) goes into where Annie is at and starts to talk to her.  As he talks and she sits there in obvious pain, he makes his determination.  Finally, he says something like.  “I love you too much to leave you.  I won’t abandon you again.  If this is going to be your future, this will be our future together.”  In essence, he loves her too much to abandon her.  Make no mistake, he gave up Heaven.  A beautiful, happy place filled with joy.  His children were there, happy to see him and it was a gorgeous existence in Heaven.  He gave it all up for Her.

I wondered – still wondered – if faced with the same choice could I do the same.

I say I found the answer – of course not the complete answer.  I will say this.  My life has never been so hard as the last three and a half years have been. You travel through a special dark form of Hell when you watch, comfort and care for those loved ones who are suffering through this disease.  The pain doesn’t come from just the physical aspect of care, but through the mental anguish we suffer with them as they do what they do, say what they say and behave the way they behave  – none of it is something you want to remember although you can’t shake the memories.

Marcus Aurelius said you must practice for the bad times.  In essence, he wrote that once a week, go to bed hungry, sleeping on a cold hard floor, without the comfort and security of your loved ones.  Prepare for the bad times. In this way, when bad times do happen – because they will – you will be prepared!

These are those bad times that the late Emperor warned us about.   I wonder if he knew how bad it could really be, that there really is NO preparation for this type of lifestyle. I doubt he envisioned our existence.

And yet, there’s hope.
Again, not to give away the ending – at the movie’s conclusion.  Both characters are united in Heaven – their Heaven.  Chris’s sacrifice freed Annie and their love for each other freed themselves from their Hell.

In a way, we hope for the same.  Freeing Derya through our love and through the loving support of our doctors and caregivers. Those who have committed to her betterment.

We thank them and know they have a place in Heaven by the greats of medicine.  For the others (who shall not be named) – well, they have to live with themselves – their own personal Hell!

Oh yeah – I almost forgot: The answer- True love for your children is unconditional love.  The love you give without any requirement.  Love here on Earth is fleeting – if you let it be.  We MUST suffer through,  our love for Derya gives neither Samime nor myself any other option – EVER! And the same is true for Deniz.   We will go through this. – no matter what.

NO MATTER WHAT! 

It’s a truth that I am sure that many of you out there have had to experience – the hard way.  Tragedy knows no borders, boundaries, sex, race or other.

Peace and Blessings to all of you!

Today, Derya says to me. “Dad, can we watch The Summer Set?” Of course, who can deny a request like that?  I put the music on, and it brings back memories for me. As I listened to her sing the song I remembered taking her to the School of Rock, years ago, when she was a teenager.  She was so into their music then and all the way till she got sick.  Even after she got sick her connection to the music remains strong.  Something I’m sure those who have gone through this will agree that they’ve had that link.

I mention this because throughout our lives we often have those things that stay with us. For Samime and myself we know that there are certain people, rescues, events, and hopes that have come through our lives in the last few years that have been “hero” moments.  I can’t mention them all in one post, and I have no idea what order they should be put in.  Over the coming weeks, Samime and I will be posting our thanks to these people.

All of those who have helped, even those of you who now like and share these posts help spread the word and help be a hero.  Here’s the key.  By helping to spread the word of what happened to Derya you are building awareness, a community that can help the next person stuck, the next family fighting to save their loved one.  You’re simply sharing of this post and the follow-up ones encourage others to find out more and then -hopefully, do something about their desire to help.  In essence, your simple sharing of this post may encourage one of your friends to share; or the conversation you have can do the same thing.  So, Please help!  Share early, Share often!

As I type this I am looking at Derya, watching her watch The Summer Set music channel, singing, smiling and sometimes dancing to a particular song.  (My students are often puzzled as to how I can do this.  After all those years of typing class, I better be able to do this and do it without any mistakes.)  I ask her:  “How about dinner, Princess?” She just smiled at me and exclaimed: “PANERA Dad!”   Again – how can I deny that smile – that face. Panera it was.

Derya’s Hero:

The Magnificent person (who will not be named – at his request) for all the help he has helped around the house.  From helping with the lawn to driving me to pick up our van when it gets fixed and innumerable things in between.  The picture you see here is the flowers that he was instrumental in helping Samime pick out and get for us. Without this person’s help, I doubt Samime and I could be able to do for Derya as much as we do.  Thank you, unnamed person.

When he reads this I want him to know that the courage to help and the dignity given in the helping of Derya is something that we can all only strive to emulate.  In hope and form, you have given of yourself as if both Derya and Deniz were your kids.  Thank you, my friend.  Just remember I knew you before Samime did.  (Inside joke!)