Many people ask me what I have done to look the way I do, assuming I have found a way toward remission, and hoping I have answers that can help them achieve the same.
I wish that were true.
I want to help comrades (and strangers alike) who are suffering from Morgellons Disease. The fact is that when you are looking at photos of me on Facebook when I’m not advocating for Morgellons awareness, you are seeing me trying to enjoy normal life. I’m not baring anything, in fact I am camouflaging everything.
Any Morgellons patient will tell you that this takes an effort unlike most we are called to put forth in life; to be engaged in life with others who do not have Morgellons means we must first try to mute or stifle the most obvious symptoms in order to see and hear beyond the roar of disease.
Because I have disfiguring facial lesions, this means SPACKLE. Yet if this was the only thing needed to prepare for a day of “normal life”, we wouldn’t be doing this here, this baring of souls… this chronically difficult stutter while trying to find the words would not be necessary. This disease is obviously about MUCH more than aesthetics and makeup.
In the beginning years, the desire to immediately report anything that began to personally help my symptoms was very strong. I guess that’s because we all think there is something that HAS TO make this go away. There just HAS TO BE SOMETHING.
And the truth that we all stumble upon eventually, when meandering the crumbling halls of the hurt on the internet: there simply is no ONE answer. Different things work at different times; a maddening and confounding fact we find out after the seconds of suffering become days that add up to weeks and months and years and the dollars and time lost looking for help or for a cure that doesn’t exist seem to mount exponentially as well.
We find out that we cannot accurately measure and devise plans for anyone but ourselves here. Even the most savvy “lyme-literate doctors” have a hard time untangling these zoonotic polyinfections and deciding what to treat first. Because there is an order to things… certain infections produce by-products and turn on genetic factors and growth factors that make other infections impossible to treat effectively unless in a particular order.
All of that said, I think you get my point: As much as I wish I had the answers to help anyone and everyone, I simply do not. I don’t have the answers to heal myself, nor anyone else. I have a voice, that is all.
Ok I have makeup, too. Although it breaks my heart that I took my healthy skin for granted years ago. I have always worn makeup, and in fact did makeup for clients professionally as a cosmetologist for many years before this disease made it too difficult professionally, and chemically.
This is what I look like. I used to post about it publicly for many years on my regular Facebook profile. I know it helped me at the time, and many others around the globe, thanks to their messages of gratitude. These days I am trying to immerse myself into regular life and real love finally, so I am turned toward joy and perhaps less toward my work of validating others.
There was a question from a beautiful sister recently, asking if I still get lesions. This question was from a sweet girl whom has very similar facial effects from this disease. This post is for her. This is reality.
Just because I can do some alright spackle-work doesn’t mean I have ever reached remission. I almost did, once… that was after 1.5 years of double antibiotics aimed at my bartonella infection. A quick relapse ensues every time I stop antibiotics, so I keep spackling.
This isn’t to say there is no hope. There is plenty. I haven’t been able to afford a Lyme doctor at all for almost a year. I almost lost my mind and memory treating my borrelia infection with disulfiram.
But I found love. It isn’t easy. Sometimes it feels safer and easier to be alone. But that is the most dangerous place, in my experience. The only time I believe that lie that I tell myself is when fear and vulnerability derail my mind. The thing is, my own childhood-trauma reactions are the only thing that cause me to believe that I’m not worthy of love. In fact, I am SO supported by and comfortable with my man about Morgellons that one of my favorite times of a day with him is when he brings me a cup of coffee in the morning and sits and visits with me while I spackle. I don’t have to hide. But I still love makeup.
(Self explanatory before and after-makeup photos taken this week on the same day. It’s not perfect, but I can grocery shop for my kids without feeling like everyone is staring at me, I can go to work most days, and I can smile back at my partner without looking away. When you have this disease, these things are HUGE.)
This post is dedicated to my friend Wendy. 💗