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Momentarily Unsilenced

Have you ever noticed how easy it is to tell yourself or someone else “WHO GIVES A SH*T WHAT OTHER PEOPLE THINK”.

Reality is… you give a sh*t. I give a sh*t. Even though I try SO HARD not to.

Egotistically and delusionally speaking, up to 7 years ago I was a legend. You name it, I could and or would do it. I could and would do it 10x better than someone else. I was loved, chased and desired my many. I was hated, envied and rumored by many more.

I was strong. I was out going. I was invincible. I was shameless. There wasn’t a d*mn thing I couldn’t do or wouldn’t try.

Pure and simple I was larger than life. I was confident, untouchable and unstoppable.

I was the parent and spouse of the year, an infamously loyal, dependent and outgoing friend, a wildly independent, physically strong, and driven person.

If you needed me, I was there. If sh*t was going down, I was there. If the bonfire blazed, I was there.

In my unrealistic arrogant brain I’d rather be remembered as the infamously awesome or horrible, son of a b*tch I once was than to be seen or known as the pathetic carcass I have become. Despite not wanting to care what other may think, I do care. I now feel inadequate. Pitiful. Ridiculous. I still have tons of good days, and have an extremely satisfying and amazing life, but there are days and moments I feel utterly defeated.

After the diagnosis I strived for years to believe that “I have it, it doesn’t have me”. I tried to continue on with my life through the changes acting as if nothing was different. For too few years, that worked.

Reality is, It has me by the balls. A large part of me has changed. Has Died. Has Disappeared.

Momentarily overlooking all the things I can do, I can no longer run out the door. I can no longer hop in the pickup. I can no longer physically lead by example for my kids (the way I truly want to). I can no longer control my motor skills, mind or body. I can no longer walk without assistance or stand alone. I’ve become a liability to and needy of others. At the mercy of on those I should be taking care of, not them taking care of me.

Every second of everyday I tell myself, “who cares what others think” “who cares what others think”. Boldly when placed face to face with you I’ll smile and hide the reality of my physical and mental hell. You’ll truly believe I’ve courageously accepted this physical and soul destroying nightmare and superhumanly transformed this torturous prison into a sunshine and unicorn filed euphoric oasis. I’ll do my d*mnedest to not show you my struggle, my pain, my insecurities. I don’t want you to pity me, to think I am weak, or to think that I’m anything less what I was.

Behind my Oscar worthy performance of “He who has it all together” I mourn the death of who I once was. Like losing a friend, a parent or a pet, you never really “get over it”. You can move on. You can smile and laugh. You can be happy. You can grow and you can thrive. But you never “get over it”. The existence crippling pain, sorrow, and tear filed angry eyes are always lurking in the shadows. Waiting to change my daily script.

I just need to keep the narrative alive that I shouldn’t give a sh*t about what other people think.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • TheUnreality
    2 years ago

    I feel your struggle. This disease has made us the exact opposite of everything we once were. Everything we never wanted to be. And as if that isn’t bad enough, it makes it almost impossible to hide it from others. How do you hide the fact that you can’t forcibly remove yourself from the house on some days, or that your body is not cooperating in public? You can’t, and while you can still do your best to put on that face of being your past self, they see through you.
    We want to feel like we don’t care what they think, it would make it a whole lot easier that way wouldn’t it? But, if they see it, and they force us to face it, then what? We have to see all the things we don’t want to, all the changes we have been forced to make and the people we have become.
    I get you. I feel your pain and your struggle. We are shells of our past selves, and hopefully one day we can have some form of acceptance to whatever this is, whatever we are…now, and for the future.

  • Ms.Diva
    2 years ago

    It’s hard to ignore this condition when we rely on things to get around. I hate that I cannot run and jump with my 9 year old. Before being diagnosed and not knowing what was wrong. I asked that I one day be able to overcome whatever illness it was. To enjoy different activities with my son. Unfortunately, them prayers wasn’t answered. I have to accept the fact that I have a disabling condition and no one cares but I, my son and spouse. They’re my rock through the hard times. It’s awful to have to think of how you will handle doing the simple task of grocery shopping or walking up to your child school. Who gives a shi*t? No one but the people who suffer from the chronic illness!

  • Meagan Heidelberg moderator
    2 years ago

    Thank you so much for sharing your journey with us and our community! We appreciate you doing so. We want you to know that you’re certainly never alone here. Although journeys may be different, the stories can be very similar.

    Always feel free to always vent here!

    Thinking of you,
    Meagan, Team Member

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