Blindsided by CF

Live, Laugh and Breathe...one day at a time!

* How do you define pain? *

How do you define pain?

Our body feels pain to warn us of danger. But it also reminds us that we are alive. That we can still feel, that is why some of us seek it out. While others choose to numb it.

Solitude has always been my analgesic of choice.

But what if feeling nothing is the worst pain of all.

What if the sharing of pain connects us to others? And reminds us that none of us is alone. As long as we CAN feel.

* Legacy. Nostalgia. Crossroads. Could-a, should-a, would-a *

What kind of images and feelings to the above words evoke in you?  As I was going thru pictures of my family from the 1960’s to present day, so many feelings washed over me.

First, I want to explain I am putting together family photos for my home and for my daughter.   As I was going thru the countless images, my mind was flooded with so many memories. These memories also affected my other senses.  At that point, certain smells seem to trigger more memories and experiences that occurred many years ago.

Spending time with my daughter is like looking into my past.  The things she says, the way she acts is so reminiscent of my past.  For example, I am teaching her about responsibility and earning money for doing her choirs (i.e. feeding Bella).  She is delighted she can put money into her new piggy bank. So, when she finishes feeding Bella, she goes upstairs, walks into my closet where I keep a container full of loose change, she takes a small handful of change and puts it into her piggy bank.  I asked her what she was doing. She responded, “Counting money to put into my piggy bank. You said I can get money for feeding Bella”.

OMG!  This is exactly what I did to my father.  He kept containers full of loose change.  Every summer my brother and I would visit him and use the spare change to buy Matchbox cars or comic books.

Looking into her eyes while she was doing this, how could I say ANYTHING.  She had me!  She took what I told her literally.  I am so blessed to have her.

* We are Alone! *

We are alone!

Why would I say something like that? We have a family, we have partners, and we have friends. We have ex’s, etc. So, why would ANYONE be alone with any and/or of the above?

Today I had my first, and it will not be last, attack totally alone. No one was around to help me breathe. I had to find my rescue inhaler while trying to remain calm and not panic. What would you do if you are breathing okay, then all of sudden, you try to take a breath and NOTHING happens?   What would you do? Panic? Not do anything and just say, “GOD is speaking, do I want to listen…this time?”

Then images of my daughter flashed thru my mind. What would her life be like without her father at such a young age? The only influence in her life would be her mother and her circle of “friends & family”. Something or someone “PUSHED” me. I had to breathe, just enough to take my medication inside my rescue inhaler. My chest was heavy, which is strange because it was empty. I found my inhaler, and tried and tried to breathe in. Finally, my lungs breathed in my inhaler. I was breathing again like nothing happened. Except, my chest ached afterword.

This incident illustrated to me how alone we all are, or at least me. There was no one here before, during or after the attack. The entire day passed without anyone calling me. I decided to stay home the entire day, just in case, the CF decided to rear its ugly face again. Besides the normal regular difficulty of breathing daily, everything was okay…today.

Those of us who are fortunate enough to have loved ones around us ALL THE TIME are very lucky.   However, there are many of us whom must deal with being alone every day, such as I. This made me aware that I should make some regular contact schedule with a loved one, or at least my main caregiver. If not, the possibility of having THE ATTACK brings about the realization of the prospect of dying alone.

As the old saying goes, “What does not kill you makes you stronger.” This might be true for some, but what happened to me, does not make me stronger, it just illustrates to me how alone I really am.   I could be as strong as Superman, but when an attack comes, it is not strength that will save me; it will be faith that everything will be okay that will save me. Once faith is gone, well, draw your own conclusions.

* Another Birthday, another year, another post *

Thanks for visiting again.

Well, it has been a year since my last entry honoring my Mom’s birthday. Today she would have been 74.

HAPPY BIRTHDAY, MOM!

Mom,

I just wanted you to know that you are always in my thoughts. Every time I look at your granddaughter, I know you are with us.

I am doing EVERYTHING in my power to beat the CF. I know what the doctors say, and what my body says. But my mind is sharp and I am determined to take every breath that GOD will give me. Every breath gives me more time to appreciate; family, friends, and loved ones. I now know what you must have felt every day.

You should know that Bro has been with me during these very difficult and emotionally charged times. He has become a MAN you would be so very proud of. I am. I thank you, Dad and GOD for giving me a brother.

I am scanning in family photos for posterity. It is important for your granddaughter, to know and see her father’s side of her heritage.  I am sure you know about my impending divorce. Well, now I can hang pictures of you, Dad, and make the house more homely for Syd. I am getting creative at family archiving projects. One such project was framing pictures of you, Isabelle and Syd at the same age. I have put those pictures in a frame in generational order. It is uncanny how genetics are so consistent.

Before I close, I wanted to share a photo of you and me from the 70’s. I think I was five (5). The photo was taken before the MS caused you to lose the use of your legs. Hope you can “check-in” on us from time-to-time.

Love,
Andy
xoxo

Mom and Andy in the 70’s

* Family…’Nuff Said! *

Greetings All.

It has been a few weeks since my last post.  Sorry about the delay, but life happens. In this post, I want to talk about something that is very important to me and hopefully to you also.  When the “tough get going, the going gets tougher”.  But that cliché does not have to hold any meaning as long as a family is around.

I am not very religious.  When my wife said she was divorcing me due to my illness, I asked the rabbi who married us to assist with counseling.  I was thinking, he is a family man, and the one who married us would want to help. His response was, “I spoke with your wife already, and her mind is made up.  There is nothing left to do but continue with the divorce.” Needless to say, I was saddened by his lack of interest and compassion.  I have not stepped foot in that synagogue since that conversation.  I was always under the impression that rabbis and/or people of faith always support you.  Here, not so much.  I was wrong with my impression.

This leads me to the one person who was there for me during this whole ordeal…my brother.  Family.  No matter what happened in the past, what petty arguments we would get into, the approval or disapproval of actions, my brother was there for me. I said earlier that I am not very religious.  That is not necessarily the truth. I am very religious when it comes to family and friends.  I thank GOD every day for my brother. I thank my parents for giving me my baby brother who would end-up being my caregiver.  My ex-wife has already moved on to her next <fill in the blank>. People always think, “The grass is greener…” However, GOD has a wonderful habit to ensure that his creation is in balance, a.k.a. Karma.  ‘Nuff Said.

So, always remember, during good times and bad, a family will always be there for you.  At least in my case, my little Bro is my hero.  It is not because he is stepping up and ensuring that for the remainder of my life I have access to my beautiful daughter or that I have the means to better myself physically and mentally.  What he gives me is hope for a better tomorrow. That regardless of my condition he will be with me up until my last breath.  What more can one say about family, except, “Thank you, GOD”.  What can be said about the abandonment of a spouse due to an illness; do not say, “I do”, when the words, “for better or for worse” are spoken.  It is a complete indecency to the institution of marriage and makes one out to be a lier.  The truth although ugly is a constant reminder that everyone lies.

For me, there will be no goodbyes, no regrets, no more asking “Why me God”? All I need are good memories and loved ones who helped me make them.  I have that now, I always did, I just never saw it.  My eyes are now opened.   What more can I say, except, “Thank you for everything and never forget that I love you”.

*Happy Father’s Day*

Hello All.

I know this post is a little late. So much is happening in my life. Change! Change is good, but it is also disruptive.  More on that in another post.

Today I want to focus on the fathers who have influenced me over the years. Fathers who are fathers by marriage, fathers who are fathers by birth and fathers who are fathers because they were needed.  Needed not in the sense of needy, needed in the sense of timing.  Timing in a young man’s life when he did not know what he was going to do with all the tomorrows in front of him.

The first father I would like to acknowledge is Bob M.  Bob M. is/was (depends on when the divorce is finalized) my father-in-law.  Bob M. is one of the wisest men I know in my life.  His caring eyes and warm heart made me feel welcome in his family.  His sense of commitment to his family and loved ones is beyond approach. It is a shame that his daughter did not inherit his wisdom, honor, commitment and most of all his sense of family.  That does not reflect on him.  I realize there are some people in this world that no matter how much you give and/or try it will NEVER be enough.  In the short time that we were family, I was honored in knowing him, and that the feelings of love and respect were reciprocated.  If not, c’est la vie.

The second father I want to say, “Happy Father’s Day” is to my biological father.  As a kid, I always looked up to my dad.  He might not have been around all the time. He had personal demons.  But then again, don’t we all. He is the type of person who kept things inside.  Talking about what was troubling him and how he “felt” was not in his DNA.  Looking back at our childhood (my brother and mine) I believe we turned out okay, considering the heartbreak and loss we suffered at young ages.  We had one father and he did his best with what he had in his personal inventory.  If he is watching over us, or playing the “back-nine” with God, I hope he looks in on us from time-to-time.  I love you Dad.  We might have had our disagreements, but at the end, you knew you were loved by so many.  I might not have said this enough, I am proud of you.

The last father I want to remember is John H.  He was what I strived to be.  He was a man of integrity, intelligence, independence, fortitude, dedication and most of all love for his family and anyone else that John thought needed a “push” or “kick in the ass” to get them on track.  I must admit he “pushed & kicked” me a lot. Not out of anger, but out of love.  Sometimes the lessons were hard ones; sometimes they were common sense lessons.  In any case, his presence, still to this day, has left a HUGE hole in my life.  I miss our talks about life, love, and family. Family meant more to John than ANYTHING.  I don’t know if he would be disappointed in my impending divorce.  He might offer some wisdom about “people say vows, they know the words, but not the meaning”.  A lot of people at their core are selfish and can only see the next shiny new toy.  They would rather throw-out something that needs fixing then take the time and effort to try to repair it. Remember with people like that, life always has a way of balancing itself out.  In the end, it is them that need fixing.” Here endeth the lesson.

As a father myself (I am so proud of my Syd.) She is my world.  She is my life.  She is my being.  She is my everything.  I can only offer this bit of wisdom. “Maybe for you, there is a tomorrow.  Maybe for some of you, there will be 1000, 3000, or 10,000 tomorrows.  But for some of us, there is only today.  Always remember what you do today matters and maybe it will matter to infinity and beyond.”

I see the things I want to remember and be remembered for.  That’s when I realize that certain moments go on forever and when they are over, they still go on, they are the meaning.  The fathers in my life will go on forever, as long as their meaning is there.  I do not see that diminishing anytime soon.  Their light will always burn because their light should be a beacon to all of us.

* Happy Mother’s Day *

Hi Mom.

Today is another Mother’s Day without you.  However, you would be happy to know that Matthew and I spent some of the days together.  Isabelle graduated from HS in two (2) weeks.  I know, I can’t believe it either.  We celebrated “Father’s Day” today for Matthew since Isabelle will be out-of-town with her mother on Father’s Day.  It is always great to spend time with my Bro.  You were right again, all we do is have each other.

I have some other news, I am getting a divorce.  I now know how you felt when Dad divorced you due to your illness.   However, on the brightest side of the coin, you have a lovely grand-daughter who looks a little like you.  But most of all, she loves her Daddy very much.  She gives me strength, she is my life, she is my everything.  She is coming with me to the CF Stride for Life walk next weekend.  I was asked to be an ambassador for the CF chapter in Atlanta.  I will be going around and thanking all the medical companies and sponsors for all the wonderful work they are doing for the CF community.  I am one of maybe less than one-hundred (100) adults over fifty (50) who are still alive with this debilitating disease that affects over 30,000k in the US alone.

The way I look at this, I am giving back to the community as much as I can.  The first part of my life was getting established in my career.  Now the second part is to give back.

Well, I hope you had a wonderful Mother’s day.  Matthew and I thought of you today as we do many days during the year.  Give my best to Nana and Dad.

Love you.  Happy Mother’s Day.

* Happy Birthday Mom *

For this entry, I want to do something different. Today is my Mom’s birthday. I want to take a break from CF for today and write to her and tell her about her grand-daughter.

————————————————————————————————————————

Happy Birthday, Mom.

You would have been 73 today.

Mom, it has been a while since my last letter.  Let me bring you up-to-date regarding your grand-daughter, daughter-in-law and me.

Your grand-daughter is A LOT like you in many ways.  She has your height, your hair, your heart, but most of all she has a light around her that reminds me of you. She never gives up on anything. She is very, very persistent. Oh, and she is very bright…I wonder whom she gets that from? Also, she seems to like comic books! It is too early to know if she will like Star Trek! Her Grandpa Peter would be happy to know the answer to that.

I want you to know that she KNOWS who Grandma Nancy is…she is Daddy’s mommy.  She saw your favorite picture of you and me; our first photo shoot, I pointed to you and said, “That is your Grandma Nancy”.

I miss you so much, Mom. I miss your positive outlook on everything. I miss talking to you. I am going thru some very tough times now. With my CF, John’s passing, the stress of not being able to work, etc. I know that you already know all that. I just need to hear that it is all going to work out.

I just wish you could be here to look into your Grand-Daughter’s eyes and tell her, how much you love her. She would most certainly reciprocate.

Happy Birthday. You are ALWAYS in my thoughts and prayers.

Love,
Andy
xoxo

* Taken Away…but always with me *

Hello.

This post is long overdue.  I have just now been able to clearly think about what I want to write.  Sometimes it is hard to write what is in your heart when your heart is broken and full of sadness.

As I mentioned in my previous post, that in the coming months and posts I will introduce you to my wonderful support system.  Family, friends, and friends who are family.  Well, one of my biggest supporters, in LIFE, not just in crisis, passed away.  He was my mentor, my light and in all the definitions; my father.

Before I get into who he is, let me tell you where I was in my life when he entered it.

The year was 1982.  I was in everyone’s hell, High School.  My brother and I just moved from on side of Atlanta to the other.  We both were “fish out of water”.  Our mother had MS (I will talk about at another time), our father was going thru a crisis of his own and could not send our mother the monies to support us.  This, in turn, forced my mother to take a three (3) bedroom apartment with our Grandmother.  My brother and I were sharing a bedroom and anything else we could.  We leaned on each other.  He to this day is my best friend.  I now understand what our mother always told us, “One day, you two will only have each other.”  I might not tell him this all the time; I love my Bro, I thank God and my parents for him.  But I digress.

In the summer of 1982, I was offered a job.  My second job, paying $3.50 an hour.  I jumped at the chance to work in an office, behind a desk, on a computer terminal, entering data for survey research.  Can you believe that?  And, to top it off, my brother, could join me!  We both worked at GSU, at the infamous Center for Public and Urban Research!  At fifteen I was working on a mainframe, writing Fortran code, entering data and interpreting the statistical output.

My summer job became my “during school job”.  How can I work and go to HS?  DeKalb country had a program called VOT (Vocational Office Training).  I could take regular HS classes from 8 am to 11 am.  At 11 am I would go to VOT class.  This class had two (2) parts.  The first part was in school.  This is where the school taught business.  How to write a memo, how to communicate in the business world of 1980’s.  The second part of the class was on-the-job.  I could go to GSU daily, 1 pm to 6 pm.  It changed my life.  I now had a direction, purpose and most of all guidance.

By my Senior Year of HS, I was already accepted to GSU to attend school as a freshman.  I continued my senior year like everyone else, but with a new sense of self.  I felt like Leo in Titanic, “King of the World”.  By my 17th birthday, I had enough money saved to buy my first car; 1968 Chevy Bel-Air.  Classic today, the butt of jokes by my tormentors in HS.  But who cared, I had a car.  I could help my family out with shopping; take my Mom to doctor appointments, no more disgusting cabs for her.  I would take my “ride” to work once a week.  Mainly on paydays.  Although I had a job, the car sucked gas.  And at .89 cents a gallon for leaded gas, it added up!

All during this time, my mentor is advising me what to study.  What classes I should take.  And most importantly, shaping me into the person I someday would become.

Fast forward to senior prom.  Yes, prom.  The last big event for seniors.  I was such a nerd, I just assumed no one would go with me.  Turns out, someone wanted to go with me.  Her name was Melissa.  She told my honor’s English teacher to, shall we say, drop a few hints that someone was interested.  To make a long story short, I asked her to the prom, and my grandmother was happy that I was interested in girls (a.k.a. not gay in her mind!).

Well, the preverbal bubble burst quick.  The week before the prom was finals week.  Although I was already accepted into college, I still had to graduate.  I studied my HS ass off.  I just finished my English final, when my chest started to hurt.  I mean really, really hurt.  Then a cold sweat came over me.  I thought it was just stress of no sleep and a mild asthma attack.  When the bell rang to head to my next period, my vision was 100% gone.  I only saw white spots.  I used the school wall to make it to my next period; home-room.  During home-room, I excused myself to see one of my math teachers; Coach Redford.  He and I had a wonderful teacher-student relationship.  He pushed me daily in class to ensure I would not get lazy.  I thank him for my early achievements in statistics and advanced math techniques.  Remember 1980’s!  He took one look at me and told me to go home!  He said, and I quote, “Son, you look like shit!  You either drive yourself home, or I am taking you.  And you will owe me for gas!”.  I was worried about my calculus final with Ms. Williams.  Coach assured me, he would handle her.  She was a little mad that I kept on going to coach for math assistance even though she was my teacher for that subject.  Never mind, I kept messing up her curve!

Once I got home, my mother called my asthma doctor.  He told her to take me directly to the ER at Piedmont hospital.  I was fortunate that my grandmother was home to drive me.  By the time I was admitted to the hospital, 12:30 pm I lost over 90% of my right lung.  I had a pneumothorax (collapsed lung).

Talk about foreshadowing.

Well, while in the hospital my six (6) friends came to visit me, my mother, bro, my grandmother and my GSU boss.  I was more worried about my job than anything else.  It was secure.  And once I am out of HS, a full-time job awaits!

I missed the prom with Melissa, but she brought food over when I was discharged from the hospital.  She became my first girlfriend in college.  But, like most HS relationships, someone outgrows the other.  ‘Nuff said.

Well, I graduated HS, had a full-time job at The Center for Public and Urban Research and most importantly, have some of my best memories of my mentor being there.

One of my most prized pictures of us can be seen here, at one of the happiest days of my life; my wedding to my wonderful and lovely wife.

I dedicate this post to John Hutcheson.  Who up until that fateful day when God wanted John with him, was my biggest supporter.  He has had the biggest impact in my life.  Like most children losing a parent, his passing is one of the biggest losses I have ever had in my life (second to my Mother and Father).  To this day, his loss has left me so empty and numb that I still cannot believe he is gone.  And the ironic aspect about his death, he died having the disease, that early on in my medical journey (which he took with me), I was diagnosed with.  He even had the same inhaler.  He told no one!

Another event during my life medical journey that totally blindsided me.  I will always ask, why!

See you in my next post.

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