Struggling thoughts during Endocarditis
Dealing with the mental and physical effects of Endocarditis and the thoughts during the battle.
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Heart Surgery #6 for my heart buddy. No matter how many times you go through this, it doesn’t get easier. I promise you, it feels like the world stops. It almost feels like the outside world doesn’t exist or you don’t recognize it anymore. Its so indescribably strange, your eyes close as a capable independent human and then they open 10 hrs later and you are not you. You need support, you have to rely on everyone as you suddenly become incapable. As an adult, its beyond humbling. You miss breathing. You miss the simplicity of everything like going to the restroom, eating, standing up, walking, showering, etc. Then you get on facebook and see everyone complaining about bullshit and you realize you can’t relate to people anymore, at least not the ones who haven’t faced their scars. Then you finally leave the hospital and the journey begins. A man just physically touched your heart and now you are back walking the streets making eye contact with another pair of eyes, hoping they can see your heart. Thinking about you everyday Jonathan, a lot of people on your side. 6 down.
Barbara Walters- At age 80 had Aortic Valve Replacement
Barbara Walters had open heart surgery to replace her aortic valve at age 80. A required surgery is she wanted to see her 81st birthday. She wrote a piece for Vanity Fair 6 months later to share her story.
Due to pressure and discomfort in her chest she went in for testing and her narrowing valve was diagnosed. She immediately went into denial. She didn’t just go for a second opinion, she had four. She had never been sick before and couldn’t believe her heart was failing her. Initially, Barbara kept to her self about her upcoming surgery telling very few. It wasn’t two days before her operation that she briefly mentioned it on the View, while maintaining a smiling face. Being the mega star she is, she didn’t have to tell everybody, as soon as the operation commenced, word would get out quickly and reach people all over the world. She had a massive support system, she was flooded with calls, messages, and flowers - from world leaders, famous actors/actresses, friends she hasn’t spoken to in 20+ years. She was the most thought about person in the world.
Barbara Walters stated in the beginning that open heart surgery is a serious operation that 1-2% of people die from. If you survive, there is a chance of depression and it may take quite some time to feel like yourself again. Depression, the side effect that is rarely talked about. Mainly because survival is the main concern. Barbara made it clear that she didn’t experience much pain and she felt pretty good over the next several months - while everyone expected her to be struggling to get out of bed. She was happy. Why? Why did she claim she was so happy while so many people struggle with depression, tiredness, and change of personality. Was it her positive attitude? Was it her denial that still remained? Was it the massive amounts of support? The piece she wrote focused on what open heart surgery entails, the process before and after open heart surgery, and support she received from what seemed like everyone in the world. Unfortunately, she never opened up about her feelings. Her raw emotions never came out. As someone who has had two open heart surgeries, I want to know more. I need to know more. I want to know what was going through her mind the moments before she was wheeled into the operating room. I want to know what happened during those 10 days in the hospital, the lows and highs. I want to the know the real unmasked thoughts, I want to know why she was scared and why she claimed she ultimately didn’t succumb to depression. In the last paragraph, her opening sentence was this, “Still, once in a while, there was a nagging thought: Could I have waited (for surgery)?” Wait…Just a paragraph before she exclaimed she never felt better. She was doing great! So why would she wonder if she could have waited? It was a reoccurring thought in her mind. Why?
She did change, something in her changed. Near the end of her piece she said this,
“Now it was time to take stock of how I felt about the whole experience. The surgery had to have had some meaning for me. I decided that with my new heart it was time for a new attitude, time to do things I had wanted to do for years and not continue doing things I had no serious interest in. No more big dinners just to prove I was invited. No more opera. Ditto for Shakespeare. No more splashy charity events. Send a check instead. The new and happier me.”
The “new” me. No longer was she going to do things she didn’t want to do. She would do things her own way from here on out. That is a CHANGED mindset and a CHANGED person. Her whole life, everything she thought and did, was based off her idea and experience of what life was. Now at age 80, everything changed. Life suddenly had more meaning, and her new attitude was going to reflect it. She lost her first life, Barbara Walters old self died that day May 12th on the operating table and she was born again. This is where I think depression comes into play, your mourn the loss of your previous self. Robin Williams said many times after his open heart surgery that he was so appreciative of simple things like breath. Changing your mindset and appreciation for things can still be a form of denial. Robin Williams best friend commented after his suicide, Rick Overton said, “I want to make clear that it’s my firm belief that Robin Williams was suffering from heart surgery related depression rather than slipping into drug depression. I have known him through the drug days and I’ve known him through the drinking days and I have known him through the dry days and he is not the person he was. The surgery altered his personality and I can only assume that on the other side now he is back to being his original self and for that I am grateful. But I want to make this clear to save his reputation that he did not turn into a callous addict and abandoned his family. The heart surgery changed his chemical dynamic and his brain chemistry as well.”
I want to make it know that I am not saying Barbara Walters must be feeling depression related to her open heart surgery and she is hiding it. That is not my intent for this essay. I simply want people to not be afraid to discuss the mental and psychological side of open heart surgery. We live in a world of possibility and its taboo to share your real feelings unless it’s all rainbows and butterflies. Frankly, people don’t want to hear about negativity. But I worry when someone as famous and Barbara Walter exclaims how happy she is and how positive the whole experience was. Half a million people a year have open heart surgery. These are regular people. Being one of those regular people, people like Barbara Walters can’t be the voice for us dealing with heart disease. Our lives are incredibly different. Often we feel disconnected from the rest of the population at a deeper level Many of us deal with depression and ptsd and we want to know if there are others out there like us. Someone to relate to and share stories with in a raw and open conversation. People who understand what were battling on a day to day basis physically and mentally. So Barbara Walters writing a piece like this is great for her, her fans, and for people who fear open heart surgery. But there is no rawness to it and disconect grows from it. The truth is life does have a new meaning after open heart surgery, you appreciate the little things more, and you see life in a whole new light. However there are millions of people out there that feel disconnected at a deeper level after Open heart surgery. Where is the voice for those people? Celebrities coming forward and exclaiming how great they are after surgery is not helping the millions of people hiding in the shadows, facing mortality, wondering whats next for their life.
"A Matter of Life and Death."10 min video about Barbara Walters and her Heart Surgery.
Heart Surgery to State Champion
In Honor of Heart Awareness Month my brother Jakob Owens put together a short documentary about my recovery from my 1st Heart Surgery to two years later winning a basketball state championship.
My goal is not to inspire, but rather encourage. I don’t think of myself as an inspiration. I struggle everyday with this disease. It’s hard to put into words the effect it has psychologically. Until you are in that hospital bed, its something you can never grasp. The trauma, the things that have happened inside those white walls never leave me. I just share my thoughts and journey in hopes it can touch others who are hurting. To provide a sense of clarity for those who are confused and lonely in the journey. You are not alone. I’ve had plenty of doctors tell me things I can’t do. I didn’t listen. I chose to live the way I wanted. I can live with the consequences, even if it involves death, I can’t live knowing I gave in, never taking risks, or following the burning desires of my heart. This video can’t even begin to explain my true feelings, but maybe its a start, and sometimes thats all we need. To simply start. Thanks for all love
Scars are Beauitful
To all those people out there who are hurting everyday and feel misunderstood in this life. Those who spend hours in their own head, who feel everything, who’ve stared death in the face, but move forward no matter what life throws at ya. To those who have to be strong, cause that’s the only way. To those who struggled with addiction. To the kids who have to go through a life of pain beginning at such young age. To those with the scars. I rock with all of you. We are in spirit together navigating this life. We all carry a wound. Big or small it doesn’t matter. We live in a broken world full of broken people and we all mask that shit in this world of "positivity" and "good vibes" that often doesn't allow room for raw emotion. Fuck that talk, all human expression is necessary. You need the lows to really appreciate the highs. I hate seeing people hurting, ‘cause I feel your pain in my heart, but don't ever let someone tell you how to feel. They don't know. I've died, I know every day is extra. All that extra petty shit doesn't matter. Like saying the word shit ha. I cry all the time..like right now. It's never ending. It just is. The beauty of all of it, is i'd be happy with my life if I went tomorrow. That's how sickness changes you. To those who offer their selfless time to others in need, and show they care, it never goes unnoticed, you are angels. To those who have shown it to me over the years, I can never repay. It really means the world. I love you. <3
For those who look fresh at small moments and see them as if it were for the first time.
To those that will never have that carefree, total immersion in simple moments anymore.
To those who have to listen to people tell you, “Oh, you’ll be fine!” or “You’ll beat it!” There is no such thing, it never ends.
To those who feel like they have to be positive because the world is so overly fucking “positive.”
To those who will never have normalcy again.
To those who have to trust, because you have no other option.
To those who have to be strong, cause that’s the only way.
To those who don’t want to get out of bed.
To those who fear every time they feel pain.
To those who are tired of hiding behind a wall.
To those who are tired of people telling them how to feel.
To the kids who feel lost or misunderstood.
To those who do not recognize themselves.
To the dreamers.
To those who refuse to give in.
To those who have to restart time and time again.
To those who have to be strong despite how they feel.
To those who are scared to death, but saddle up anyway.
To those with the scars.
To those...
To everyone, I walk with you.
Emotional Scars of Open Heart Surgery
Can we please discuss more about the emotional scars of open heart surgery. Yes, the physical nature of open heart is extreme and needs to be taken seriously. However, if we take the right steps, physically must of us recover and return to the things we were able to do before, or even exceed our previous ability. Time will heal your physical wounds, but emotionally and psychologically you will never be the same. Your surgeon can’t and won’t explain the emotional side of it. It’s not their job, they haven’t experienced it, and they don’t understand. Their job is to fix your broken heart and send you on your way. Although your heart is now repaired, another hole opens up. Your life is flipped upside down.
Things that you thought were once so important hold little weight. Once you wake up from surgery the most important thing becomes breath. Now all that matters is survival. All other worries go out the window, health becomes everything. Without breath, without health, their is no life. In those first couple days in the hospital it hits you, life will never be the same. Everything you thought you once knew about life has changed. Laying in that hospital bed gives you a lot of time to be alone with your mind. Theres not much else you can do but stare at the wall and think. Over the next few months, you physically won’t be able to do much of anything. This time gives you a lot of time to think about life in probably the most organic form possible. What is life without death? Death makes life meaningful. You can’t appreciate life without death. Its like good and evil. If everything in life was good, how could you appreciate the good? You can’t know that something is good without the presence of evil. Just like you can’t know how precious life is, without the presence of death.
Open heart surgery breaks your armor, allowing you to grasp life in it’s purest form. You value all the little things after you go through the suffering that open heart surgery may bring along with it. However, it’s important to note, appreciation doesn’t mean happiness. Robin Williams months after heart surgery said this on Ellen, “You appreciate the little things like breathing.” Yes, you feel reborn, you were given a second chance at life. Everything seems more beautiful, moments seems more meaningful, loved ones are cherished more. However, when everything settles down you are still left with all the trauma that open heart brings. The person you were before the surgery is gone. You are awakened to a new life. How will you live it?
Did Robin Williams' heart disease eventually lead to suicide?
Two years ago today, at age 63, Robin Williams committed suicide, just a few short years after undergoing a successful, life-saving open heart surgery. Was it the result of depression and the emotional trauma that often descends upon survivors of open heart surgeries? His death sent shock-waves throughout the world. One of the most talented, beloved comedians of all time ended his life prematurely. Which begs the question, what ultimately led to his demise? There are many theories of course, depression, his long struggle with addiction, money, previous marital issues, and various health struggles. Most recently, his widow Susan, revealed Robin was struggling with the onset of Dementia with Lewy Bodies. LBD, in short, is a debilitating brain disorder. Clearly his health had been declining for years and he struggled with emotional issues, so perhaps the onset of this disorder was the last straw. I believe however, that his open-heart surgery played a major contributing role. While surviving it can give you a new appreciation for life, it also rocks your world and profoundly changes you in ways you never expected.
You might be thinking, "What the hell do you know"? You’re right, I never knew Robin, I am only speaking from my own personal experience of going through two open heart surgeries and from what I learned researching the large number of interviews he gave about his heart surgery and the years following.
I have spent countless hours over the last couple years scouring the internet trying to find every moment of him talking about his heart surgery and the effects it has had on his life. I found an overwhelming amount of information on how his heart disease was a major contributing factor to the end of Robin Williams. Open-heart surgery, a procedure that saved Robin’s life, may have been what killed him in the end. He was clearly never the same from the moment he awoke from surgery.
Personally I have found comfort in all the things Robin Williams has said about heart surgery. To hear someone as successful as him verbalize many of my own thoughts and feelings made me feel like I was not alone.
The following is information I have collected pertaining to Robin Williams and his heart disease:
Robin Williams best friend of 37 years, Rick Overton, had this to say after Robin’s passing:
“I want to make clear that it’s my firm belief that Robin Williams was suffering from heart surgery related depression rather than slipping into drug depression. I have known him through the drug days and I’ve known him through the drinking days and I have known him through the dry days and he is not the person he was. The surgery altered his personality and I can only assume that on the other side now he is back to being his original self and for that I am grateful. But I want to make this clear to save his reputation that he did not turn into a callous addict and abandoned his family. The heart surgery changed his chemical dynamic and his brain chemistry as well. He told me his heart surgery in 2009 had left him feeling like a mortal for the first time in his life, and he didn’t like how that felt.”
Dr. Drew Pinsky had this to say following William’s death:
"There is nothing that prepares a man for open heart surgery and what awaits afterwards...The transformation is epic for some after this life saving surgery, but the emotional carnage it causes is rarely discussed. When it's life or death it hardly seems pertinent to talk about how you're going to feel afterward. Now we have a man who was saved by the surgery, but who evidently succumbed to the depression and the other assaults that can besiege a person with addictions. We need to talk about it more, educate people who are walking into life saving heart procedures, what side effects can await that will blindside those not warned.". Robin Williams had valve replacement surgery in 2009, one of the most difficult recoveries in open heart procedures. Dr. Pinsky: "It wasn't the heart surgery that killed him....it was the brain disease that came with it." (paraphrasing) -Link Here
In an interview with the Guardian in 2010, Robin got personal:
"Oh, God, you find yourself getting emotional. It breaks through your barrier, you've literally cracked the armor. And you've got no choice, it literally breaks you open. And you feel really mortal." Aitkenhead then asked, "Does the intimation of mortality live with you still?" "Totally." Is it a blessing? “Totally." Off-camera, Decca Aitkenhead claims Williams is a different kettle of fish from the character he portrays on TV. He went on to say, "His bearing is intensely Zen and almost mournful, and when he's not putting on voices he speaks in a low, tremulous baritone – as if on the verge of tears – that would work very well if he were delivering a funeral eulogy. He seems gentle and kind – even tender – but the overwhelming impression is one of sadness. "I don't think they gave me a new valve but a tiny vagina. I don't know. I'm just so emotional these days. It's like this weird thing to know you have been opened up but you're alive - big time. It really makes you appreciate little things, like your breath. I realize life can be short. This is your window, what do you want to do with it?"
“He told me his heart surgery in 2009 had left him feeling like a mortal for the first time in his life, and he didn’t like how that felt.
Robin Williams on Marc Maron's podcast
Marc, “I know with letterman after his surgery he talked about the vulnerability”
Robin, “Oh yeah, Letterman leaned over to me one point and said, “Do you find yourself getting really emotional after the surgery, and I said yeah, and then he said were back! and I was like oh Fuck I’m not gonna break down, I'm not gonna pull a Barbara Walters, but you do get more emotional because they crack the armor and all of the sudden guys are like fuck you man, I'm all armored up and then they peel you open and you have this scar here and they opened your ass up and literally to the world, they went inside and fixed the box and sealed you back up again and said your back…you’re so vulnerable in a weird way and the drugs they give are so powerful that you wake up going where am I?”
I will leave you with some thoughts from Robin Williams:
“The surgery was humbling, I’m much more grateful for everything, You and I have both been given a second chance literally and to take that and go with it”
When asked if he feels happier now, he says softly, "I think so. And not afraid to be unhappy. That's OK too"
“I want to work on things that will be interesting and with people I enjoy being with, cause life is short to be hustling and doing all that other stuff”
“No I think it’s exhilaration..I’m alive!! but not with heart surgery, they literally open you up, they crack the box. And as a man you often have that macho persona, but you get really vulnerable and cry over the site of a kitten and you get very emotional about everything. But in a way its a wonderful thing it really opens you up to everything."
"I've been calling up all of my friends and saying, 'Thanks for being there."
After surviving open-heart surgery in 2009, during which one valve was replaced and another repaired. Williams wiped away mock tears and told The Chronicle: "I don't think they gave me a new valve but a tiny vagina. I don't know. I'm just so emotional these days."
There is nothing that prepares a man for open heart surgery and what awaits afterwards.
“You come out the other side going what”s to be angry about, you’re alive."
'When I'm awake, I don't want to go to sleep. I don't want the hassle of turning the light off, putting my head down and then all the thoughts. I don't want all those thoughts."
Thank you Robin for everything. You are missed greatly!
Links to other Robin Williams articles and videos:
Robin on Letterman with heart tie
R.I.P Robin
-Derek Owens