All Aboard!

Lately I have been vacillating between swallowing down my feelings and letting them fly like spitballs at whoever/whatever is closest by. As you can imagine, that makes me super fun to be around and honestly, I don’t even like being around myself much these days.  When I was younger I kept a pink fabric-covered diary with a little lock that my younger sister would break into with a bobby pin and inside I spilled my 9-year old guts all over the pages. I remember the feeling of writing something down, something important to me, and then feeling better for having done so, even at a young age.

However, I also knew that there were risks in putting to paper anything too personal because of younger sisters with lock-picking skills or…you know…a snooping mom.  Once, I was writing an entry and I felt this overwhelming urge to write down every single bad word that I knew. It didn’t make much sense, but two paragraphs into my entry I started carefully spelling out most of the words on George Carlin’s list, and then calmly finished writing my entry. On an even stranger side note, I specifically remember drawing a sinking Titanic at the top of the page, complete with little drowning stick figures in exaggerated waves.

I have no idea what any of that has to do with the words here today, other than sometimes I still feel like using every curse word that I know in my entries.  Sometimes I just want to come here and vomit my guts out all over the digital page, peppering all of my sentences with spicy adjectives, taking down anyone that has caused offence using my sharpest weapon…my tongue.  But ultimately, being reckless and loose-tongued does nothing but cause harm. And long after the last word is shared, relief having purged the words from my mind, regret sets in.

Regret leads to guilt and I am a master at feeling guilty. Guilt leads to shame and shame, for me, leads to depression.  My shames are not the life-altering things- or marriage-ending things-but just little things that build up and make me doubt myself. I feel shameful for feelings of hate, anger or sadness.  I feel shameful that I let fear in to take root when I should, instead, let in hope.  I feel shame for not relying on God enough…for letting anxiety steal joy but inside of my head, I still feel like a 9-year old girl with a pink diary, racing to her room to put poison pen to paper and eviscerate my mom for asking me to clean my room. At least that 9-year old girl was truthful.

I think that there is a way to be authentic and honest in a blog, without being derisive, hurtful or divisive, to find a sort of catharsis in writing, but often that isn’t well received.  People have come to expect a certain tone from this blog, but that tone has been long-gone from my life for quite awhile now, and trying to force it here just makes me feel like a faker.

I’ve always wanted this place to be a true depiction of life with rare disease, at least OUR true depiction, but instead it has turned into a place full of pretty pictures and inauthentic sentences.  So here’s the thing. I need to write. I need to vent. I need to put thoughts out into the universe and have someone…anyone…say to me, “It’s okay, I’ve felt that way too.” or “Girl, get it together!”  I need dialogue, I need expression, I need to find a way to insert some of the truer, uglier words into my life instead of faking it on the outside, and stewing on the inside.  I need to be more authentic.

I need to write again and much more often, and sometimes it might not be pretty.  Bear with me. The change in tone might be alarming, but do not worry.  I still love my life, I love my God and I love waking up each day with a sense of “today doesn’t have to be yesterday” and putting on my shoes and getting to it, but my true voice hasn’t been here at for quite some time and that needs to change.

Let’s just hope that this blog doesn’t end up being my own personal Titanic. 😉


13 thoughts on “All Aboard!

  1. Mindy, you said, ” I need dialogue, I need expression, I need to find a way to insert some of the truer, uglier words into my life instead of faking it on the outside, and stewing on the inside. I need to be more authentic.”

    To your last sentence, you just were. Without details I can say that I’ve been there, know how you feel and, even in these days, I still have those feelings. Outside I’m strong, but inside, in my heart I’m very weak. To make it short… you are not alone in your feelings. Maybe not for the same reasons, but each of us have our own dark moments from differing causes. Don’t keep them in. Bring them out and expose them to the light of day and to the even brighter light of God. It won’t make them go away but It just might help in trying to cope. And, go ahead, yell at God. I promise that He will not yell back. But, then again, I feel that you may already know that.

    And remember, stewing is only good for cooking… 🙂


    • Glenn, you’re such a great support to me as I stumble and trip along in this life. Thank you for your words. I’ve never had the nerve to yell at God, but I know that He would still love me if I did. A lot needs exposed to the light, only time will tell if I have the nerve to do so. Thank you again!

      Liked by 1 person

  2. You’re human. That’s what my mom would say. You do need to get it out of you and let go of it. If you do not, it builds up and comes out towards those you do not want to hurt. I know. Trust me, I know. My mom has been my biggest supporter through thick and thin with everything regarding my daughter and her diagnosis. I read your earlier post about if you didn’t know if people still read your postings. Just wanted to let you know we do. Though my daughter does not have all the issues that your little man has, I know you have to be scared, tired, exhausted. Exhausted at times beyond return. And you have to keep going. There are so many moms and dads out there that feel the same way you do. Just know its okay to feel. It’s okay to be human. It’s okay to say bad words. It’s okay to take a breather for yourself. Even though if you are like me and feel incredibly guilty about it when you do. Please keep posting.


  3. You need catharsis, dear one. Catharsis is the elimination of a problem or complex by bringing it to the surface and giving it expression — or playing the violin– or singing. Zorba danced.


    • and you are right George, I need to cut my nails and get the violin out again. I never really realize how much I miss it until I move my fingers along the neck once more!


  4. I picked your lock just to see the little drawings you added to your entries! I loved them. Maybe there is some add on program where you could add them to your blog


  5. I think you have already talked yourself ( along w/ some help} into a more reader friendly way of expressing your feelings. Just as in a personal conflict, a momentary step back, or an interlude w/ calming music, will result in kinder, more gentle words. If edginess is necessary, quality words, not Carlinesque diatribe, hammer home the point far better.


  6. Mindy, life as a patient or a parent of a patient with a UCD is not easy! I feel that you need to allow this to be your place to vent because nobody understands like your UCD family. We understand the frustration, the anger and even sometimes the despair just as we also understand the joy of meeting a goal or going a certain length without a hospitalization. Let it out and let it out in whatever way you feel you need to. The world will not come to a screeching halt if you use a swear word on your blog!


    • I know Amy. I am not just talking about cursing, I am talking about being truly HONEST. Not sure if people can handle that. ha!


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