I write in my head all day long.

Not only because it’s a lifelong habit, which it definitely is… and besides life providing ample experiences for each of us to consider every day, having this disease called “Morgellons” means daily intrusive symptoms.

Maybe the disease is behind my occasional inability or discomfort with being public about anything. The symptoms are still so alarming, even after seven years of living this life as a hostage in my own body. That and the fact that only people with Morgellons can fully understand what it feels like to live with it makes me want to talk about it, and I still feel the need to connect with other sufferers.

On social media I did talk about my disease openly for many years; in order to validate others suffering from Morgellons I even posted public close-up photos of my skin. I felt this need to carry the burden for others somehow and also to show the ugly to the world. This was my gift of validation for the community I trusted and felt such a part of for a time. Years, in fact.

Of course that didn’t last, as trust in some fellow fighters on this journey was lost… and that loss of trust has definitely affected my writing on this whole topic.

I still keep getting spooked every time I think about putting my thoughts in writing! After too many crushingly negative experiences with some members of the Morgellons community I find myself feeling mute most of the time; at least publicly. I want to write… but I also want to hide.

It just feels so much easier to withdraw, to retract within to safety and surety. If I don’t put myself out there, I won’t get hurt. This is a place I have visited many times, and it leads to isolation. Safety sometimes means isolation. Then what.. be safe but sad and alone?

I don’t know… I’ll be working on shifting the way I think about this writing, and who it’s actually for. It may be the only way I’m able to keep writing without the shackles of self-consciousness and the filter of heartbroken anger and paranoia.

Maybe that sounds dramatic, but the way in which my heart and my inbox have been brutalized by people who said they loved me and were there ’til the end… people who I unabashedly trusted and who each eventually showed their shallow and hateful hand of cards. It means I now need to address the trauma of that if I want to continue writing about Morgellons at all. I honestly haven’t decided if it’s worth it, yet. Having the disease is traumatic enough. It could be time for me to stop trying to find words for any of this.

I see others doing a fabulous job using their voices to stand up for Morgellons patients and they seem passionate about similar aspects regarding human rights. Young people with lots of energy!

I remember years ago being perplexed in the various support groups on social media; where were all the Morgellons veterans? Had they gotten better? Had they *gasp* died?

Now I find myself BEING one of those people who isn’t in groups anymore, and for me the reason is PTSD. It’s not that I’m in remission, it’s that seeing all of the photos we all take of the same terrifying things and also witnessing all of the intense trauma and loss that we all are forced to endure for years on end.. it retraumatizes me now to see all of it. In the beginning I needed to be there.

I really can’t be there at all, anymore. Besides that, I won’t be going to conferences annually like I had for 6 years. And you know what they say, focusing on things makes them bigger. These days I tend to keep myself busy with mothering, loving, and messy art. 🧡

My writing isn’t finished; I doubt I will ever stop needing to spill my brain out into text in one way or another. I have a lot of great things happening in my life and I’m just not sure that my thoughts on Morgellons will benefit anyone anymore. The disease has stolen so much from me and terrorized my soul for so long now… and like everyone else, I just want to be happy.

2 thoughts on “Recalibrating

  1. Oh gosh. Only just seeing this. You said it. Expressed the feelings, withdrawal, questioning, wondering if this is same path and reasons of the multitudes who have fallen silent. ??

    The many levels and arenas in which this disease delivers trauma to us is astounding. It keeps coming in the most unexpected of ways. But I think in our quiet solitude we’re becoming savvy to its workings, and finding ourselves differently…. perhaps moving towards an inner warrior to face ‘it’ or life head-on unabashedly as it comes.

    TRAUMA. WARRIOR. Trendy words that upon reading pass too casually by our awareness. And MORGELLONS. The living meaning of these words take us into …. what really needs written. Dissolution. Reconstruction – well no; there’s hardly a remake because the destruction can be so utter that the raw material left is unknown. What’s got any life left in it for us from whence to build? We have to look with new eyes, new discernment – because nothing is the same, and nothing can be taken for granted. Our friends, loved ones, doctors, institutions often not only don’t serve the function expected, but sometimes undermine and endanger us. Our battle is being waged for our very existence.

    Overly dramatic? Well, yes. Sort of in the telling. Because it makes us want to turn away. It’s just much. Too much. Sometimes it’s just enough to live it as it challenges you to in the moment. To tell it makes it too big.

    Liked by 1 person

    1. Jen… Please, never change… your mind and everything that you are- ALL THAT YOU HAVE SHARED AND BARED… every word is cherished as a balm of honesty that is rare and succinct and SO hard to find. Each sentence you share is quotable, to me. That’s how much I relate, and feel understood.

      If you didn’t bear the huge soul discomfort of typing these words out and leaving them, I wouldn’t know. I wouldn’t get to know how understood I am and how deep and beautiful your perspective is. It helps. It helps so much, you don’t even know. And I’m not the only one, feeling it here. Thank you, THANK YOU, THANK YOU JEN.




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