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.
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 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 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 restarts 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 my mind for six years it 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 six years, non stop.
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 seven 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 to 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 thirty pounds. I know what it feels like to wish I never have any of my conditions.
I could keep on going ans 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 last year 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
- Protect Yourself and Your Heart While Hiking This Summer (liheart.org)
- Clinical Trial To Treat Chronic Pulmonary Sarcoidosis Enrolling Patients Now (medicalnewstoday.com)
- The Story of My Life (writeon0035.wordpress.com)