The Weekend Revisit Of: I know What It Is Like To Be Me

If you devote yourself to the positives in your life, the negatives will begin to divorce you. — Philip Arnold

I received an email from a reader the other day who chastised me for always “being happy”, and that I was full of “sh*t”, that no one with a chronic illness, especially as many as I “claim” to have, could ever be happy all the time. I am not going to bother to quote anymore from the email, but I am going to reply to it. Here is my open reply to the Facebook user Debbie that sent me a direct email.

Dear Debbie

Thank you for your email. First of all, I never claimed to be always happy. Life is made of the law of opposites, yin and yang, night and day, hot and cold etc. It is simply impossible to be a single emotion all the time. Anyone that claims that they are always happy is either a liar, disillusioned or simply insane.

Also, you insinuated that my claims of having sarcoidosis and the related conditions brought on by the disease is an exaggeration and that I don’t know what it is like to have the disease otherwise I would never be able to always be so “up beat”. I really do wish you were right. I wish that I could wake up in the morning and realize that this was all a bad dream.

You see, the terrible fact is I do know what it is like to have pains in my body at different points for no reason. Sharp, sometimes crippling pain that makes me stop in my tracks and take a deep breath, and I know what it is like trying to maintain some sort of composure so the whole world doesn’t have to know my plight.

I know what it is like to stand and feel as if there is no air left in the world, and that my lungs are incapable of absorbing anything, and I know what it is like to gasp like a fish out of water trying to get some air in. Although it happens for a few seconds, I know what it is like to feel like the last breath I had was probably going to be my last one ever, and that maybe, just maybe I may never be able to breathe again. I know what it feels like to take that breath in after I have that initial panic, and feel my chest expand and have that moment of relief that I am still able to breathe.

I know what it feels like to walk a short distance on an incline or up a set of stairs and feel like I walked up the side of a Rocky Mountain, having to stop so that I am not huffing and puffing like a ninety year old man, my heart racing and beating strongly against my chest. I know what it feels like to be sitting calmly, watching my favorite show and my heart feels like it came to a stop for a few seconds and then suddenly restart with a huge pump that makes it feel like my heart is about to implode within itself.

I know what it feels like to wonder in the back of my mind for [12] years if that electronic device under my skin in my upper left chest is ever going to have to work, if it is ever going to have to send that life resuscitating shock to my heart to restart it or keep it from beating at 200 beats per minute, a shock that I am told feels like I have been kicked in my chest. A shock that I have been told can literally send you flying off of a chair.

I know what it feels like to be constantly told by doctors that I am an anomaly, that I should not be alive, and that someone with as many combined conditions as I have should not be as active as I am. And I know what it feels like to have it in the back of my mind that maybe, but hopefully never, one day my world will come crashing around me, and I won’t be able to be as active as I want to be.

I know what it is like to give up so much that I loved doing because my body is not able to do so anymore. I know what it feels like to watch people having fun sledding, and knowing that I can no longer do one of my most favorite pastimes because I have wires in my heart that could become dislodged if I fall too hard and could possible kill me.

I know what it is like to have to plan where I sit, on a plane, in a train, in a concert, at a movie, at a restaurant, so that my left side is never exposed to someone hitting into my defibrillator. I know what it feels like to be doubled over in pain because my lovely pet accidentally hit into my defibrillator. And I know what it feels like to be sore there for days afterwards. I know what it feels like to have pain around my defibrillator for seven years, non stop [until it was eventually replaced and the new one one aches some of the time].

I know what it feels like to have to plan my whole life around doctor’s appointments, blood test, and various different tests. I know what it feels like to have a period of a month or more where I am in a doctor’s office, lab or testing facility almost twice a week. I know what it feels like to every month, sometimes two or three times a month to have blood drawn and to know everyone in the lab by their first name.

I know what it feels like to be tired, constantly tired. I know what it feels like to have never, ever had a day in my life in the last [12] years where I was not tired. I know what it feels like to never wake up feeling refreshed. Truly and completely rested. I know what it feels like to feel the blood rush to my ears and an unexplainable anger build up in me for no apparent reason because of a little tablet. And I know what it feels like to feel as if I am almost going to pass out if I stand too fast.

I know what it feels like to worry, to hope, to wish, to be depressed, to be angry, and to deny all that I have with my conditions. I know what it feels like to watch my gut and wish I never gained those extra pounds. I know what it feels like to wish I never have any of my conditions.

I could keep on going and going and going with all that I know what it feels like to be me. But the thing is, even though I feel these things, one thing I always try to feel is positive. I give thanks for all the things I have in my life and all that I am still able to do. I am so happy to be alive, to be loved by a beautiful woman, and to love her in return. I am so blessed, and I know it. And being a negative ninny won’t get me anywhere.

It is a pity that my positivity angers you to such a great extent that you found it necessary to send such an abusive email. I do hope that you are able to displace your anger towards having your disease in other ways. Might I suggest you look into a punching bag, paint the word “sarcoidosis” on it and punch the hell out of it instead of lashing out to complete strangers?

I sincerely wish you peace and joy and I hope that you are able to find some positivity in your life too. I truly do believe that my positive attitude is what has kept me alive and healthy. After all, my latest echo cardiogram done a week ago showed that my heart function is now at 65%. In 2007 with a heart output of 20-25%, I was told that people with cardiac sarcoidosis do not improve, that I had a 50% chance of living to today and that by 2017 I would have needed a heart and lung transplant. No one can understand it, believe it or explain it, but my heart is getting stronger, and it’s all to do with my positivity.

Be well, be happy, be you

Originally Posted February 28, 2013. Some parts updated to match the current time line.

©️2019 Basil Rene. All Rights Reserved 
Images©️Basil Rene or Sourced From Mematic &/or Giphy Who Holds ©️Info For All Photographs In Thier Application 

Written by Basil Rene

I maintain two separate blogs. One is LifeAsAnAnomaly.com where I discuss my life with sarcoidosis and the other is AChefTalksFood.blog, where as the name implies, I talk about food.

7 comments

  1. Good for you! Can’t imagine why someone would feel the need to complain about you remaining positive in a difficult situation. Of course you are not always happy – but you choose to celebrate the good and try to minimize the bad. Don’t let the crazy ones get to you. I enjoy your posts and although I don’t have near the problems you deal with I do have chronic pain and your positive attitude reminds me to also focus on what is good.

    Liked by 1 person

  2. Hi Basil,
    First, I’d like to wish you and your family a very healthy and happy New Year. Thank you for so explicitly describing your life with sarcoidosis. Some people just don’t get it but I can relate to everything you describe. I normally don’t have very much to say about my condition because like you, I don’t publicize it but on this occasion, I think that I must. Not that you need any validation from me, but I feel compelled to support your positivity because it has also worked for me.

    I have been living with sarcoidosis now for over twenty years and like you, my medical professionals cannot understand why I’m still here. But we know why – it’s the ability to move beyond the disease and work towards enjoying as much as possible in spite of the challenges we face every single day. I have sarcoidosis in my heart, my lungs, my skin and it affects my joints, my kidneys, etc. I have to maintain a spreadsheet to manage my doctors’ appointments and other lab tests.

    When I was first diagnosed, there was a sarcoid tumor growing in the right atrium of my heart which had to be removed by open-heart surgery. Over the years my defibrillator has been replaced twice and it has shocked me at least four times. You’re right, it’s like having a thoroughbred trying to get out of your chest and it will lift you out of your seat. I am a 911 survivor and on that day my ICD was banging away in my chest as my hero (who saved my life by helping me down from the 71st floor of Tower One) and I descended. It reinforced my decision to do everything possible to enjoy my life and be as happy as I could. I have gotten to the stage where my heart output is now down to the 30s but I wake up every morning, sometimes after just a few hours of sleep and feel blessed to be alive.

    My leg muscles are now weakening, so I started physical therapy in an effort to give myself more mobile time. I can’t dance as I used to anymore but I can enjoy others doing so. Over the past several years I traveled abroad every single year making sure that I enjoyed the things I love to do. As you know and have expressed, you have to be creative and adjust to your environment and levels of activity. I have no idea how long I’ll be on this earth but while I’m here, I live for the moments in between the panic and the pain and thankfully those positive moments supersede the negatives.

    I always look forward to reading your marvelous articles. You give your readers hope and always show us “life as an anomaly”. Stay well, strong, positive as always, and please keep writing. I wish for you, a wonderful life.

    Liked by 2 people

    1. Happy New Year Kathleen! Thanks for the beautiful comment. It just goes to show that you are what you think. Once you accept it but live like you don’t have it, you will thrive rather than just survive. I send you my most positive and heart felt wishes for the new year and all the coming years. Be well. Continue to be happy and most of all just be you! 😉

      Liked by 1 person

  3. Great post, as usual, good Sir! If anything, I feel sorry for this Debbie Downer. I make sure to remind my boyfriend regularly how proud I am that he keeps a positive attitude as we are making our first steps in this maze of doctor’s appointments and incessant physical tests. And you have been an inspiration to both of us, since the first day Dr House mentionned sarcoidosis (I actually found your blog searching for information about sarcoidosis in a waiting room at the hospital). Too bad for Debbie, if she prefers to dwell in her misery.

    Liked by 1 person

    1. Thanks! And Happy New Year! Unfortunately some people’s only way of dealing with adversity is to try to drag others in the hole of despair with them. Hope you boyfriend is dong well

      Like

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