Monthly Archives: March 2012
I want to start by saying thank you to Christy Sillman for having the courage to post this question “Given the strong feelings lately on this group I may be totally playing with fire by asking this, but, for my own curiosity and spiritual journey I wonder what role religion has played in your life. NO JUDGEMENT AT ALL – That’s the rule if you respond to this post! I was raised Catholic and continue to consider myself catholic, but I’ve been recently exploring Buddhism and the spiritual clarity found with meditation. Anyways, I’m just curious what others have experienced and how religion has helped them, or not. Thanks!” This post set me on the path to reexamine my own Faith
That question started as you can imagine a long and lengthy discussion of religion and faith. I have explored some religions on my own but, do not claim to be an expert in any way. If you catch me in a mistake then I’m sure I will have made one. However, I have yet to find in any organized religion anything that can not be explained away by some scripture. It’s the reason I feel that all of the religions in the world have gotten it wrong. But Faith! Faith is something entirely different. Every religion talks about Faith. Faith in God, Jesus, Allah, Yahweh and Buddha. Every religion is the right religion, but you must have Faith. There where a lot of comments on Christy’s Post about Who was what religion and who changed and if you did or didn’t have Faith.
Here is what I have to say about Faith. I listen to people talk about it. The people in the CHD community, my regular community, the religious community for sure. I see a lot of people go to church, temple, synagogue, and pull out their prayer rug. If you ask them why? They tell you it is their Faith. They do these things because, they have Faith in their religion, their religious leader or their particular religious scripture. They HAVE Faith. As if Faith was an object. As if the person who belonged to the right religion had the REAL Faith and everyone elses Faith was somehow counterfeit. I often wonder what people would do if you asked them show me Faith? People talk about putting on their Faith or gaining their Faith as if it where a coat or a medal of honor to be worn for other to see.
Faith isn’t an object. You can’t see, touch, taste, hear or smell it. You can’t even be sure that the person talking to you truly has it. Faith isn’t tangible. You can’t gain it from a book, person or particular religion. You have to have it. You have to breed it in your heart or your soul. It has to come from you. It has to be yours and only yours. Only you can know what your Faith is. Only you can know how strong your Faith is. Only YOU! Sure you can show me acts of Faith or Talk about acts of Faith. But I can’t see your Faith inside you.
Faith for me is more like a feeling. Faith is like Love, Empathy, Compassion, Jealousy, Anger, Hatred and Fear. You can have them. You can contain them within your being, your heart, your soul. Use them as tools to help or hurt yourself or others through your own actions. But you can’t give them away. I can’t give you Faith, although I can have Faith in you. I can’t give you Love, although I can Love you. I can’t give you compassion, although I can treat you compassionately. By the very same token I can’t give you Hate, although I could Hate you. I can’t give you Anger, although I can be angry at you. And I can’t give you fear, Although I can be afraid of you.
To me Faith works like other feelings. You don’t need someone to tell you about your Faith. It is yours. YOU own it. Like all feelings the more you nurture them the more they grow. The same is true for all feelings. Both the good and the bad. Here’s how I practice my life. I try to cultivate Faith, Love, Compassion and Empathy with in myself. I do that by practicing acts of kindness. By helping when I can and believing that I am meant to be there. I mindfuly tell myself to believe. It is not something that happens overnight. You have to work at it, the same way you would work at anything else. It takes practice and time. You have to accept that at times you will make a mistake. You have to tell yourself that there is a reason. You see the last thing I want to share about my Belief in Faith, Love, Compassion and Empathy is that the more you practice them the more they grow within you. The more space they take up the less room for things like Jealousy, Hatred, Anger and Fear.
I don’t know where to begin. As you all know I have a CHD. I have had CHF for over ten years and in that time have had over 30 catheterization procedures. From Pace Makers and ICDs to attempts at ablations and mapping. Point is I have had a lot of them.
My very first Cath Procedure was 20 years ago at Uconn Medical Center and it was essentially an ablation attempt. Although it was so long ago that it was in fact a study and was not something that was normally done. It was in an attempt to stop my Atrial Fibrillation and of course didn’t work. Anyway I was very nervous going into it. It was the very first time I had been at the medical center and literally a half hour before they brought me into surgery was the first time I met my Doctor. He was a very nice man and seemed very confident about the procedure. He also didn’t look like he had slept in days. He had huge dark circles under his eyes and his white coat was wrinkled liked he’d slept in it. By the time they wheeled me into surgery I was beyond nervous and had moved to petrified. It didn’t help that this was the first time I had any heart procedure since just before 4 years old. He kept me on the table for 14 hours trying to stop the Atrial Fibrillation. He couldn’t and as had been prearranged the next evening took me in and did and AV Node ablation and put in a permanent pacemaker.
As it turns out it all went fine and allowed me ten more years of an extremely active lifestyle. Ten years later I was having issues again and hooked up with an Electrophysiologist, Cardiologist and Pediatric Cardiologist and their Nurse Practitioners and other staff. They pushed me through the system and where there with answers when I had questions. If I called I received a call back right away. Communication was good and I really, really trusted them. We came up with plans and put them in action. They where there for me and so the catheterization procedures where easy. I was never nervous before them or about them. The Doctors took the time to explain what ever I wanted. They had things together before the procedures and I felt as if everyone had done everything that they could to prepare. It became a joke about how relaxed I was about my procedures and how often I was in the hospital. I was once told they should put my picture next to Lais a faire in the dictionary. Because I seemed unaffected no matter the size of the problem.
Thursday I have a cardiac procedure. My first with my new team. It took 3 weeks and several calls from me to get a date for the procedure to begin with. I eventually had to call my team and ask for the number to the cardiac cath team so that I could physically talk to them and make them do it. Apparently when a Cardiologist says they need to call and book an appointment that’s not good enough. I book the date and then get a call the next day saying we have to push it back 2 weeks because your surgeon wants to do it himself. That way he can be sure to get all the information he wants. (this makes sense) So for 2 months I have had this date set. I immediately mentioned that I have an allergy to Heparin and so they can’t give that to me to ween me off of my Coumadin for the Cath. I tell them I have used a low molecular weight version called Lovinox. I explain I have had this allergy for a decade and have used the Lovinox repeatedly during that time. Now it is 3 weeks before the Cath and I’m worried that no one has gotten to me about writing a script for the Lovinox. So I call my cardio. 3 days nothing. So I call again. I get a voicemail that they need to talk to me. I call again 2 days nothing. Beginning of last week I finally talk to my Cardiologist. After 30 minutes of repeatedly saying order me Lovinox, I’ve used it before it’s fine. I get I’ll let my NP know and he will call you back and take care of it. 2 days no call. I call back, my Cardiologist is at a conference and hasn’t said anything to the NP. So now the NP and I go back and forth over the whole thing and he is going to confirm with the Cardiologist on Monday and get back to me same day. Monday comes and goes. Tuesday I call and leave a message no call, Wednesday I call and get a call back but he hasn’t talked to the cardiologist yet. Thursday no call. So today I have to call multiple times go over everything about allergies to Heparin and how I’ve used Lovinox and why it works and not the Heparin. Ok I will confirm and call the script in today he says to me. Then he wants to know what they use during the procedure as a blood thinner in an emergency situation. Like I know. I mean, I’m the patient. You know the guy who they put to sleep. So I tell him call my EP down here and he will know. He has done all my procedures. He tells me to hang on that he can’t find his number. So I say give me your direct line and I will call him and have him call you directly, before Thursday. I know this is the best way, because I know my guy here is going to do it and I’m not so sure about these new guys up there. I go down about 7:30 to get the script. Not called in. I need to start taking this stuff Saturday it’s Friday night. I have to page the on call physician explain the whole thing again and she calls the script in. I get a call an hour later from the pharmacy. My Pharmacist (I have had her as my pharmacist for more than 30 years, since I was a child) she says the on call is a resident and not an actual Doctor so her script won’t be accepted by my insurance. I had to go on-line and do some maybe not quite kosher things to get into the Doctor section of the website to get a working phone number for my Cardiologist so that my pharmacist can then bill my insurance properly.
Here is my problem. I have spent nearly 9 years trying to get healthy enough to have surgery which is my final goal and for which this Cath is the last step before it happens. I have to call to get that cath booked, because they haven’t called me. Then after a month I start worrying about my allergy, because no one has called me about it. So I start making inquiries myself. It takes a week to get a hold of anyone and then another week of what is obviously a painful lack of communication on this new teams part leaves me scrambling to do their jobs so that, they can do the procedure they say they need to do.
The easy-going patient is gone. They have erased him. The calm and relaxation before the storm has been torn away. I am left doubting whether my new “team” has really done everything they can in preparation to make this procedure successful. I am angry that I should have to go through this. I am angry enough that I am going to be demanding a sit down with all involved to find out why this has happened. I am nervous that they won’t be ready if there is a problem. For the first time in 20 years I am afraid of having to have a Cath.
A quarter of a century ago, if you where a member of a middle class family and a thirteen year old boy, chances are you where selfish. It wasn’t your fault. You where thirteen and didn’t have to think about a roof over your head or whether you where going to be able to eat dinner that night. You didn’t have too. Your concerns, as they should be, where about you. Are my clothes popular, is my haircut cool enough, does that girl in Science class like me. The typical things that thirteen year old, middle class boys do and should be thinking of. That’s who I was the summer I met Charley.
It was maybe mid June and I had just arrived home from Boy Scout camp the day before. I remember sitting on my front porch in the morning. I was up earlier than normal, probably because of the schedule I’d had to keep at camp. I was enjoying the shade of the big oak trees, as well as the lack of mayhem that usually ensued when my little brothers and I where together. The quiet was nice and I was just letting my mind wander when I spotted him.
He didn’t belong in the neighborhood. I know all the people on our street and he wasn’t one of them. He was older than me, maybe in his twenties, I thought. His hair was very thin even for his age and he had a very flat face, with high pronounced cheek bones. He walked with his arms held out away from his sides and it gave him an even greater look of strength. He didn’t need to walk that way, he was a good size regardless of how he held himself. Even from where I was sitting fifty, sixty feet away I could see the chords of muscle standing out on his neck and arms. He was barrel chested and broad-shouldered with a narrow waist. At six feet tall and one hundred eighty pounds, with not an ounce of fat on him, he might have been considered by some an intimidating figure. In contrast I was about five foot three inches, stick thin and a hundred fifteen pounds soaking wet.
As he passed by he must have caught me watching him out of the corner of his eye. Without pause he turned and started straight at me up the hill, that we called a lawn. He paused on his trip across the lawn just long enough to pick a Dandelion. He came right up on the lower steps and held the yellow weed just a few inches from my face, saying “Here”. I took the preferred flower and he leaned even closer to me as a barrage of words came pouring through the huge grin on his face.
I would like to stop here for a moment and talk about my new friends grin for just a moment. It is important to mention it, as it was never off his face for even a second of the time I spent with him. In fact I think his face may have lacked the muscles required to frown. His grin I would describe as “toothy”. By that I mean that when he smiled you could see all his teeth. Not like you might if you where to think of a model or actor with perfect teeth. No my friends teeth where there and straight but, it was as if they where a little to small for his mouth. There where small gaps between them and it seemed as if maybe they weren’t quite long enough to meet each other when he closed his mouth.
As I was saying he started to spout words at me. I managed to eventually understand that his name was Charley, he was new to the neighborhood, he liked my house, he liked me, he liked flowers and that flowers where pretty. It was obvious to me, from listening to him talk for just those few minutes that Charley was Mentally Challenged. A quarter of a century ago we would have said Mentally Retarded but, it is obvious to me now, that the way Charley lived his life it was far from retarded. In fact I imagine it to be more fulfilling and richer than the lives of most people.
I asked Charley if he could show me where he lived. I was worried that maybe he had wandered away. In what I came to think of as Charley’s style he grabbed me by the wrist and began dragging me down the hill, shouting repeatedly for me to follow him. I followed Charley to the end of our street, about two houses down from mine. With the grip he had on my wrist I didn’t really have a choice. We went up the drive of the house on the corner and through the front door into the living room. Charley was shouting the whole time that he was home.
It only took a second for Charley’s Mom to appear from the kitchen and his Dad to appear at the top of the stairs. I think they where as shocked as I was to find me attached to the end Charley’s hand and standing in the middle of their living room. After getting some help to extricate myself from Charley’s grip, I explained what had happened. They had a good laugh and said they would talk to him about just grabbing random people and bringing them home. I learned that Charley was 17 and was indeed mentally challenged. The doctors figured that he was going to spend the rest of his life looking at the world through the eyes of a four to six year old. They where renting the house for the summer and then moving. Apparently Charley’s Dad was then starting a new job. Maybe in Massachusetts, I can’t remember.
As I was leaving Charley surprised me and asked me if we could go walking together. Charley liked to walk. The selfishness of my, to cool, thirteen year old self and the lessons that I had been taught by my parents about dealing with the less fortunate battled momentarily. Thankfully for me the lessons won out. I agreed to go walking up to the old bus garage in the middle of our street and back once a week. I think I agreed to Saturday mornings but, I’m not truly sure of the day we finally settled on. For the sake of the story where going to go with Saturday.
I am not going to bore you by describing every walk went on with Charlie. We simply walked to the bus garage and back every Saturday. It was maybe a half mile round trip and took twenty to thirty minutes tops. Charlie would talk, ask me questions and show me things that he thought where cool or pretty. For me that meant looking at a lot of flowers, bugs and things like tree lichen. I spent 5-6 hours with this young man in total all summer and I can’t think of one thing he said, that taught me anything of value. Because Charlie didn’t teach by telling you what you should do. He taught by living his life in front of you. So that is what I’m going to tell you, how Charley lived his life and how I woke up one day and realized all the life lessons he had taught me.
I would meet Charley at his house. Meeting Charley was almost always the same. I would knock on the door and Charley’s Mom would open it. She would call Charley and tell him I was there for our walk. Charley would appear from another room at a run. He would scoop me up in a giant bear hug and half crushing me, swing me back and forth saying Hello Jon, Hello. He would then set me down so I could breathe. He would reach around and kiss my cheek the way a little kid might and say I love you Jon, let’s go. He would take me by my hand and we would leave for our walk up the street. I saw Charley once a week for 30 minutes. I was a small part of his life and yet when I came I was the only thing that mattered. I was the center of his universe at that moment and the following 30 minutes it took us to walk to the bus garage and back.
That was Charley’s first lesson to me. Living in the moment. Charley always lived in the moment. When you where with Charley you didn’t think about what happened before and you weren’t worried about what was going to happen later on. All you worried about when you where with Charley was what the two of you where doing right there and right then.
Charley and I would leave the house holding hands. I think it had been ingrained into Charley that when he walked with someone he held their hand. I can imagine it was the way that Charley’s Mom kept him from running out into traffic while at the grocery store. But Charley would hold my hand and always stopped in the yard to pick me a “flower” as we headed down to the street. When I say flower, It might be a dandelion or clover or some other small flowering plant that caught his eye. What ever it was Charley would find something to give me as a present. And here’s the important part he would always thank me. He would tell me this flower is for you. “Thank you for walking with me today.”
For me that is Charley’s second lesson. The lesson of gratitude. He was thankful to get 30 minutes of my time each week. At that time, and at that age, there where so many things I wanted or could think of doing, that would have had far more meaning to me than 30 minutes of time with Charley. I couldn’t understand then what that 30 minutes meant to Charley and how he could appreciate it so much.
Charley and I would walk up the street together and he would talk about the houses we passed. Things that you and I might find unremarkable. Things like the house has shutters and its color. But here’s the thing. Charlie saw everything. I mean everything. We would be walking and he would say something like that house has pretty purple flowers. Before you could comment on that he would be off and standing above the flowers, his back to you. He would sneak back over to you hands gently cupped together and when he opened them. Magically a small blue butterfly would be sitting in the palm of his hand slowly beating it’s wings. I wouldn’t mention this if this where a one time deal. Charley would do this kind of thing again and again. It might be a chipmunk peering from inside a hollow log, a beetle or a small toad that had been shading itself under the low hanging leaves in someones garden. Every time this happened his eyes would light up. It was as if what he was seeing or holding or touching what was the most amazing thing he had ever seen for the very first time.
That was Charley’s third and fourth lessons rolled into one. It was to open my eyes and see everything. That there is always something to see. It may be hiding under a leaf or peering from around the corner of a building, but it is there and you keep your eyes open you will see it. The fourth is that everything is special and wonderful and amazing in its own special way. I learned that by listening to the amazement in Charley’s voice as he talked about what he had found and by being allowed to see these things through his eyes the way he saw them. It doesn’t matter if it’s a little blue butterfly sitting calmly in the palm of a young mans hand or the person sitting next to you on your bus ride to work in the morning. They both have something special about them and it’s your job to see it.
Most of our walks go something like this. We would spend 30 minutes walking half a mile. With Charlie darting back and forth pointing out this thing or that. The chatter of his voice running with only an occasional pause to pull an answer out of me. A half mile in 30 minutes. That’s one mile an hour. You would think that we where moving at a snail’s pace. That the walk lacked energy or drive. That is the furthest thing from the truth. The energy of those walks were frenzied. It was like Charley had somehow absorbed the energy from a lightning bolt and was able to doll it out as excitement for everything in the world around him. I was no slouch physically at this point. A 30mile bike ride was nothing for me. But there where days I would get back from trying to match Charley’s energy for that half mile walk and would be exhausted.
This was Charley’s fifth lesson to me. Excitement. To be excited about everything. Everything I see and do. Whether it be rocking out with friends to a favorite band or having to drag in wood to heat the house, while the wind drives the rain against your face so hard it stings. Both are exciting, both are proof that you are alive and kicking. And Life itself, when really lived, is exciting.
We would get back to Charley’s and he would invite me in for a glass of water and a final bone crushing hug. Then I would take my leave of him and go about my week until it was time to go for my next walk with Charley
Charley’s sixth lesson is simple. Charley loved me. It was palpable when you where with him. He really was a 5 year old stuck in a mans body and he loved like a 5 year old boy. He loved me with a kind of innocence, that is born of never having love requited. Whole heartedly and without fear, requiring and asking nothing in return. The kind of love that we should all do our best to attain. Love fearlessly with no thought of that love not being returned.
You might at this point, think that I am a lucky man to have learned such important lessons at the age of thirteen. What an enriched life I must have led up until now. Well…You would think wrong. As I said in the beginning, thirteen year old, middle class boys are selfish. And I was. After going on a walk with Charley I thought, what a great person I am. I mean for ME! to spend a half hour with someone like Charley makes me a true saint. In my mind I was likely to be categorized with people like Gandhi or Mother Theresa. In a word I was an idiot.
In fact it wasn’t until I was reviewing my life about 9 years ago now, that I realized how important Charley and that summer was. That Charley had truly taught me some amazing lessons and what an idiot I had been to have spent all this time ignoring them. That was the point where I became truly sick from my CHD and was facing the possibility of a heart transplant. I had received a packet talking about the survival rate of transplant at ten years out. I had worked out that the survival rate was in fact slightly below 50%. Sobering statistics like that make you rethink much of what you have done with your life. For me it made me think about Charley, the time we had spent together and what it had meant. It was only until then. Until I took the time to remember the things he had said, done and the way he had lived his life that I realized what an incredible young man Charlie really was.
It also brings me to lesson seven. An important lesson that would transform our world if we could all learn it and remember it all the time. That is that everything on this planet has value. That there are lessons to be learned from all things and every person if we are open to the possibility. If you don’t believe that’s true, then you haven’t read this story. The story of how a young man, who will always have the equivalent intelligence of a kindergartener, taught me through the simple living of his own life, seven of the most valuable lessons I have ever learned.
I now carry those lessons with me every where. I do my best to practice them every minute of every day. More often than not I fail at it. Sometimes I fail at it miserably. Sometimes my head gets in the way and I over think things. Sometimes my inner grumpy old man shows through and my emotions get the better part of me. I have yet to remember to practice all of these lessons all at the same time. I’m not perfect and I expect I am normal in that I never will be. But I carry theses lessons with me and I try to exercise them as often as possible. I am certainly no Charley but, on occasion things come together in just the right way and I have a moment of true happiness.
I am working on a very special blog that was inspired by a good friend who reminded me about how I learned many of the things that help me through life now. This “story” is dear to my heart and has more to do with the things we should all learn versus just the things needed to survive CHD. I have been working on this for the last four days and I am still not happy with it. For that reason I am apologizing for not having something to post to you this past weekend. Hopefully I will have it ready for next week.
Let me tell you a little about my journey over the better part of this last decade. I have lived in Congestive Heart Failure for almost 12 years. In that time I have been mostly able to lead a normal life. In fact I would go as far as to say I was more active in my life than many people who I know. It hasn’t all been peaches and cream though. 8 years ago I was forced to leave work. I had numerous tests done and a new ICD put in due to episodes of V-tach. During that time I found that my EF (Ejection Fraction) was only 15%. There was talk about the possibility of getting a transplant or the maybe surgery.
I was sent to Boston to be evaluated further. They said they didn’t think I would need a transplant at that time and they wanted to discuss surgery. It turns out that wasn’t an option either. They felt unless my Ejection Fraction was over 30% that it was too dangerous. Instead I returned to Hartford where they put in a Bi-Ventricular ICD. That worked well and after a year I had managed to get my EF up to 22%. After another 7 years I have managed to raise my EF to 35%. I am slated to have a final Cardiac Cath to determine a game plan for up coming surgery.
I was ecstatic. I was jumping for joy. I was going to have surgery and they would put in my first ever Pulmonary Valve. I would be able to go back to running and hiking. A world of possibilities had opened up to me. Things where going to get fixed HOORAY!!! I felt that way for the first week or so. I still feel that way sometimes but, it all came crashing down a few days ago.
My parents asked me to sit down and have a talk with them. My Parents asked that I think about what I wanted if things should go wrong during the surgery. They asked me to think about whether I wanted to stay hooked up to machines to keep me alive if the outcome looked bleak. They pleaded with me to make out a living will before the surgery, so that they would not be forced to make those decisions. I couldn’t blame them. They had to consider those things, when I was a child and had my other surgeries. It isn’t really fair to put them in that position now. Besides, I have my own opinion of what I would like to happen, depending on the circumstances.
That morning and that talk is when the surgery became real for me. The seriousness of the situation finally set in and it was a little sobering to say the least. I have worked hard to get in the position I am in now and the frightening nature of open heart surgery isn’t going to persuade me not to do it. But I will be entering into it with a little more respect and a lot more humility.