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

HappyI 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 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

10 Comments Add yours

  1. Well said. I admire who you are, I also believe your positivity is a big part of your journeyr and enables you to overcome what sometimes is considered the impossible. So the heck with the nay-sayers.

    Marie-Chantal

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    1. Basil Rene says:

      Thanks Marie!

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  2. Nancy says:

    Wow! I feel as if you were talking about me my friend. I know what it feels like about most everything you said. I don’t have a defibrillator yet. But everything else is the same. It is a struggle for us every day to remain upbeat. No, most people will ever understand this. We don’t want to be nothing but a disease. I too have given up the thing I loved most. Nursing. I think we must redefine our lives. Figure out what we can still till do. To give back to the world and to be happy. People have to work at being happy sometimes. It doesn’t just come easy. We have to make it for ourselves. I won’t let evil Mr. Sarc win. Never!

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    1. Basil Rene says:

      Thanks Nancy, and I sincerely hope that you never have to have an AICD implanted, ever!

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  3. kim moore says:

    Basil,You are trying to make you’re life positive in the best way you can by being positive,why waste what time you have left being mad at the world.You have taken what life has handed you and made the best of it.I have sarcoid too and have not been near as ill as having major heart and breathing problems,althoug I do have an arrythmia,shortness of breath,hearing loss,pituatary dysfunction,and chronic unrelenting fatigue.Enough that I can not work any longer,I just take care care of my home,husband,and pets,volunteer one day a week at a cat shelter,and am involved in my faith group.That is the limit,any more and I get very ill.I have to admit the people that confuse me are the ones with chronic illnesses that gloat about still being incredibily active,doing things like long hikes and bikerides,skiing,and swimming,this doesn’t sound very tangible to me,but whose to judge?I am lucky I can still go on short walks and do isometrics.Also any one with active sarcoidosis absolutely will become ill if they stay in the sun too long.Nancy I also gave up nursing two years ago,but it was time,I did it for 22 yrs,and I don’t miss it the way my friends and coworkers thought I would.I guess because I have a husband with copd,pets and family that has taken it’s place,but it is very hard to give up a career you have enjoyed and been so much a part of.Blessings,Kim

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    1. Basil Rene says:

      Kim, I have long learned not to compare my illness to anyone else’s. everyone can only understand how they themself feel. I, for all that I have, am told by my doctors that there is no way that I can be as active as I am and that technically I should be on disability. I don’t do nearly as much as I used to but I am still very active. Looking at me, people do a double take when I am exercise walking and have the oxygen pack on my back and the tube up my nose. I have been told that I look 35 although I am 51. I even was stopped once by some other walkers to ask if this was some new exercise thing. I explained that I had conditions that warranted the use of supplemental oxygen and they expressed their disbelief. It’s all so relative. I suffered with terrible migraines and cluster headaches (which are worse than migraines) all my life, and I could not understand how other people with migraines needed to curl up in a dark room. Why couldn’t they get on with their life like I did? That was until I was told by a few doctors that I have a very high pain tolerance. So I don’t judge anymore. It’s all relative.

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  4. kim moore says:

    P.s I am glad I found this blog,I have been searching for the right one and am very careful about what social networking I get involved in,and I think this is a good one for me.Kim

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    1. Basil Rene says:

      Kim, always glad to hear that my musings are interesting to someone. Thanks.

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      1. kim moore says:

        I admire you’re stamina,it is what keeps you going I’m sure.I had a few migraines in my 20s and one cluster headache ,they are awful,i was actually wishing i had a migraine instead!my husband took a picture of me while i had it and i wondered why,then when i saw the pic my face was all mottled.luckily that was yrs ago and no more of those or migraines.keep pushing on Basil.

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        1. Basil Rene says:

          Thanks Kim. My migraines have almost stopped. I learned to actually stop them. When the “star” appears I close my eyes and actually make the star smaller until it goes away. Unfortunately I still get the cluster headaches. Those are not much fun, but I push thought them.

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