This freewrite is an entry for the BASE: Body, Art, Science, Contest WEEK#1 where the organ of this week is the heart. This idea of this contest is to talk about the heart as an organ and as related to love.
This is a little bit of the story of my heart and the one I passed down to my son 
I love my son, and I hate my heart for what it has done to him.
I often say that the biggest regret of my life is that my obesity caused my son’s ptsd. When I found out about my heart problem I thought I had it because I was obese. But instead the doctor told me that I was obese because of my heart and the limitations it put in my body. My obesity was a product of my heart problem, not the cause of it.
So this is why I hate my heart, but instead blame obesity for everything. They are linked together anyway.
Without my heart, I would be dead.
Without my obesity, I can live.
I was supposed to have a death on the table a number of times but I lived instead. I have many stories written of the times I almost died in surgery before anyone knew I had this problem with my heart, but I will not tell them here. I have already made a video about The Dread of Fear I feel when I am about to go under the knife yet again.
I have a genetic disease of my heart called:
Hypertrophic Obstructive Cardiomyopathy
This is where the inside of your hearth muscle is messed up and grows too thick. No one knows why. This condition can be mild and uneventful, but if the muscle gets past a certain thickness, it obstructs the valves and your heart leaks blood out of it, is not efficient, and you have a lot of trouble with the activities of daily life such as breathing.
I spent years and years of my life struggling to breathe. It was just something that was hard for me. Lots of things were hard for me. It was just one more thing that I couldn’t breathe. I did not know that most people do not have trouble breathing like I did.
When you can’t breathe, your whole body is starved for oxygen. All of your other organs suffer too, but those are coming in future weeks.
Later the doctor told me I was superhuman to breathe how I did. I remember that comment through the dread of fear I was in at the time.
Basketball Players and Me
My condition is the thing that causes basketball players to die on the court when they are 20 years old and apparently healthy. Some people that are athletes push through and do stressful activities even though they shouldn’t. The harder your heart works over time, the worse it gets.
This disease can cause a heart murmur and can be diagnosed by ultrasound, but if you never get checked you might never know you have it. So these basketball players push through, and push though, and push through their symptoms, and then one day the muscle obstruction catches onto the valve and they die one minute later as the whole heart fails right away.
I remember hearing that story about basketball players when I first was seeing this doctor who was going to save my life. I was in his office constantly while he tried different ideas and brought out his textbooks and models to explain to me what was happening.
I remember thinking, "Stop telling me this basketball story! Do you think I care about basketball players when I am about to die!"
Years later I told him my feelings about his basketball story and he told me how scared he was too at that time. He was new to his practice and did not expect to be treating such a sick single mother with such a young kid. He was not expecting me to live more than I was was not expecting to live, and it would have been a terrible failure to start out his career.
He had trouble speaking to me at all, but he had to say something during all those initial visits.
I can only remember a few things clearly from those terrifying first few months when I was going to die soon.
- He told me I was lucky I had never been active.
- He told me I was lucky I survived my recent pregnancy.
- He told me I did not have a very good chance of living much longer but that he would try.
My Sports Experience
I only tried to run once before this. In Ninth Grade somewhere, they thought we all would run on a track so they could time us. I ran a few meters and couldn't do it. I was fat so no one cared, and I never tried that again. I could not breathe at all when I tried to run.
I'm a swimmer from birth, and did one year of competitive swimming. I was the slowest person on the team and would not speed up for anything. I like how I swim and never went back to that part of the sport. I'm still the slowest person in the pool, but where are we going anyway?
Due to some circumstances, my pre- and post-natal care was a little spotty. I was alone then too, and kind of winged it. My heart doctor took this information in stride and asked a lot of questions about that time.
When I was pregnant, I really had trouble breathing. Didn't everyone? He said, No."
After I gave birth, I was really sick and had no energy for weeks. I just sat still and held the baby. Wasn't it like that for every new mom? He said, "No."
Figuring out how bad it was
I was not diagnosed until I was 36 and by that time I was the sickest anyone had every seen someone with this condition while still living. My heart was a blubbering mass of goo that had its own strange way of still working.
My heart was strange enough to draw crowds of people to look at the machines when I was so sick and almost dead. I used to lie there watching their backs as they stared at the screens of machines and discussed what they saw in disbelief as if I was not even there.
I wanted to leave. But I was taped up with all kinds of leads, and naked; and I couldn't walk very well anyway. And plus - I was the star of their show.
By this time I could not care less about doctors but I wanted to live for my then 3 year old son.
We had no one but each other and without me where would he go?
Planning to be dead and trying to live
So I wrote my will at an attorney’s office like my doctor told me to, and found a guardian for my son, and prayed every minute of every day not to need either one of these things.
Would the drugs work?
Should I get a pacemaker instead?
Should I get a different kind of pacemaker instead?
Should I have open heart surgery instead?
No one could make those decisions but me, and I could not make them either. So I lingered near death.
I almost died.
I was saved.
I almost died.
I was saved.
I almost died.
I was saved.
This went on for years. I had no one but my son. My son had no one but me.
I got fatter. I got sicker. I couldn’t walk. I couldn’t breathe. I couldn't eat. I couldn't sleep. I couldn't think.
But I had my son, so I had to keep going.
I tried to make a normal life for us.
I took him to Disneyland. We sat on benches and rested between places I had to walk. Twenty steps were too many.
My life succeeds over death
Finally I almost died, signed the papers, a pacemaker was implanted, and I started to get better.
Then later I almost died, and another pacemaker was implanted, and then I started to get better.
Then later I almost died, then started to lose weight, and then started to get better.
After I finally lost “half my size” my heart condition disappeared from the screens and no longer shows Hypertrophic Obstructive Cardiomyopathy at all.
It's as if it was never there.
"If I did not know you have this, I would not be able to see it." says my doctor. "You would not be diagnosed."
So was obesity part of the problem after all? I say yes.
Today the battery in my second pacemaker I still have is dead, but I’m not.
My son has my heart
I’m still here at 59 and my son is 25 now. He has my genetic condition, but nowhere near as bad. It terrifies him anyway. He knows how life threatening this can be.
When he will talk to me about it, he describes symptoms I know so well. No one could say these things if they did not have what I had.
But I can't find him now, so we are not talking. His pstd that is my fault has driven us apart.
He is afraid of doctors and hospitals because that was where they took his mommy when she was going to die.
Now I thank God for his many blessings constantly and ask him to please help us heal from this lifelong trauma.
So far, God is working in mysterious ways and I do not expect that to change.
And one thing I know in my heart is that where there is life, there is hope.
Thank you freewrite for the prompt of Death on the Table. Without your push, this post would still be on my hard drive.
The moment before I started to lose weight
The moment
The moment before the last time I saw my son