We are a society of closets. We hide our skeletons and parts of ourselves we don’t like or want public. There is too much hiding going on. First there was the gay closet, which led to the AIDS closet. Well, folks, there is a new closet in town. The “M” closet. It is where people with Morgellons disease hide. Morgellons is a repulsive illness – a component of Lyme- that has a painful stigma attached to it: Delusions of Parasitosis. It is the diagnosis of psychosis that drove us all to hide among the parkas and mud encrusted work boots. I’ve been sitting in the bottom of my closet in a ball with a scarf I can quickly pull over my face to hide the lesions when someone opens the closet to grab a hat or jacket. If there was a church bell tower nearby, I would hang out there like Quasimodo.
I’m tired of being in the dark. I’m done hiding. Anyone who thinks I’m crazy, or repulsive can talk smack and sneer and point and crack jokes or do anything else that gives them a stiffy. But I’m done hiding. Morgellons is real, it is spreading and it is devastating.
Aside from the puberty acne outbreak, I always had beautiful skin. I did my share of tanning, but was by no means a sun worshiper that did the tanning bed thing. I went to the beach and spent time outdoors having fun. I felt good in the sun. I was aging gracefully with a couple of fine lines appearing here and there, but for the most part, looked 5 – 7 years younger than my true age. It was delightful. What I didn’t know was that along with the undiagnosed bacteria swimming around my internal organs, it was also nesting in the deep layers of my skin. BB likes cooler temperatures. It is more comfortable in the skin than other warm oxygen rich locations. So over twenty years, my skin became slowly infested. It likes the base of hair follicles. Where ever one has facial, hair, or chest/back hair, I have lyme bacteria.
The fun started about 10 years ago. I started breaking out. I would get these acne like lesions, but they just wouldn’t heal. It became ridiculous. I didn’t associate all my other ailments with it. Who knew? It became so awful that I shelled out $2,000 for lazer treatment. It helped. For a year, I looked better. Then it just got even worse. My sister with her beautiful clear skin would come over and I would be covered with a half inch layer of make-up to disguise the open sores covering my face, neck, back and chest. It was awful. I suffered for years with this. My skin would start to clear up, look almost normal, then I would wake up with five or six new lesions. It was a four week cycle. Even my husband noticed the cyclical nature of the breakouts.
Then it became the “the woman with the tin-foil hat” story. It started getting weird. Roswell weird. That is when I began the complete breakdown. I became afraid of myself and my sanity. One day while drudging through my morning routine, I swiped a cotton ball with toner across my lesion ridden face. I looked at the cotton ball and there they were. Dozens of little thread looking things. Blackish navy blue fibers. Geez—I said to myself. What the hell is in these cotton balls? I grabbed the bag and took out another. I examined it. I put toner on it. I actually got out a magnifying glass and really pulled it apart. Hm. Why don’t I see any black shit? I swiped my face with it and then looked at it again. There they were – again. What the fuck? I leaned in and looked in the mirror. I got up so close my nose bumped the mirror. I saw them. There were on my face. Tons of fibers. “I just took a shower,” what the hell. I washed my face again and applied moisturizer. I went about teeth brushing and dressing then headed back to the mirror for make-up. I took a close look at my face. I thought I was having a nightmare. My face was covered with fibers. I started rubbing my skin to get them off. The more I rubbed the more they appeared. Then I stared seeing red and white fibers. Some of the white ones looked like the cotton. I must be crazy. It was getting late and I had pick up Olivia to take her for lessons, so I put on my make up and left the house.
Six hours later while driving home, my skin became itchy. When I rubbed it, I felt like there was sand all over it. It was gritty. I dare glanced in the rear view mirror and noticed a little glimmer. It captivated me for a moment too long as Olivia yelled “mom” and I slammed on my breaks practically breaking her ribs against the seat belt. “I’m so sorry honey” I said. Embarrassed, I put aside the glimmer and focused on getting us home in one piece.
Back home, I immediately dropped my purse and grabbed the bottle of vodka. I was feeling completely overwhelmed and off balance. I literally must be going crazy. After mixing a drink, I ran up to the bathroom to begin the evening inspection – a ritual that consumed my life for quite some time. My face was covered with – for a lack of a better term – debris. It look like I stuck my face in my daughter’s craft kit. What the fuck is all this glitter?” I asked myself in a state of disbelief. I have fucking glitter coming out of my pores. And black specks. And red threads. And wait… is that turquoise blue? Nice shade, but what the fuck is it doing in my pores? “Oh, this just can’t be happening.” This is just a nightmare. I’m dreaming. I’m just having a bad dream. But I’m not. I’m awake. Enter, Google.
The next three hours, my face was plastered to another flat surface, the computer monitor. I typed fibers in skin in the search bar and off I went into the abyss of Morgellons. There were pictures and descriptions and holy hell – yesssss. That is what is happening to me. I’m not the only one! I’m not dreaming. This is a thing. It is Morgellons. For a moment, being able to put a name to it made me feel better. It was fleeting joy. When I read that people with the disease were diagnosed as “fucking insane” I deflated like a balloon with a pinhole. I’m not crazy. I have this, this junk in my skin. I grabbed my husband and showed him my discovery and expected him to jump up and down and clap saying, “oh yippie, you found out what is wrong.” I stuck my face up in his and said, see… see the little shiny glittery things, and the threads? It’s Morgellons. He pulled his head back as if approached by an hissing asp and srunched up his face. “I can’t see, my eyes are shot.” He walked out of the room glancing back over his shoulder. It was like the words, do I call for a pick up or just drop her off, were running across his forehead in bold letters. Nope, no wind left in these sails, thank you.
I was aggravated, hurt and mad and wanting another cocktail to help me forget the fucking living nightmare. Part of me wanted to combine the cocktail with a bottle of Nyquil hoping it would induce a coma or better yet, death. I just didn’t want to live through all this shit anymore. I was tired of being sick with something that no one can figure out. Experts claim you can judge your overall health by the condition of your skin, hair and nails. My skin was covered in lesions and oozing moon dust, my hair was falling out to the point I got wigs and my nails were peeling and pitted. Add to that the bruises that covered me for god knows what reason and the blisters that were appearing on my knuckles for no reason. Yep, I think I have something. Depression doesn’t quite describe the emotion. I felt painful desperation but had no emotional support. I was alone on my fucking sick ,freak-assed island of mysterious illness. God please take me tonight. Please just take me, I prayed nightly.
Life continued rolling along and my skin just kept getting worse. I finally built up the courage to go to a dermatologist. What a massive mistake on my part. When I discussed what was transpiring with Dr. Pencil Neck Geek, he basically implied I was crazy. He made me feel like a puppy that just peed on the carpet. I left his office with my tail between my legs – mad, hurt, crying. I reflected for a moment about how many times in the past decade I have walked out of a Dr’s office feeling so god awful with no answers other than stress—see a Therapist. Later that day when hubby came home from work, he looked at me with his one eye closed and head slightly turned as If he was waiting for a shoe to come flying at him as he asked, “How did it go today.” It was kind of rhetorical as he was also wincing at the amount of vodka missing from the new bottle I just bought two days ago.
Tears started streaming uncontrollably down my face. There was no sound. No sobs. Just a river of tears spilling down my checks and soaking my shirt. His face softened. I didn’t think much about what it must be like to feel so helpless and watch a person suffer like I had been suffering for so long. I was too consumed with my own misery to see he had his own kind of misery forming.
I think it was around that time he set up an alert on his phone to receive notification of any news or articles about Morgellons. One day in March he came walking in the room and announced there was a Morgellons conference taking place in Austin Texas in mid April. It cost 200 to attend, plus the hotel and airfare, meals. No doubt we would rack up close to two grand to go, but we booked the tickets and went. It was the best money we spend in twenty years.
The panel of presenters was terrific. There were MDs and PHDs from around the globe assembled with all their current research on the illness. It was so professionally organized and scientific. I felt like a true patient and not a tin foil hat wearing freak show. Then there were the participants. It was 150-200 of people just like me—middle aged, very worn down sick looking people. I couldn’t help but notice how many others had the neck scar. It became apparent that thyroid disease came along with whatever this Morgellons thing is.
So it was at this conference they revealed the scientific connection of lyme disease to the Morgellons. I was shocked. I had a chance for a one-on-one dialog with Dr. Peter Mayne from Australia. I mentioned that I had been tested already and it was negative. That is when I was educated about the lack of effective testing. Part of me felt a tremendous relief. I knew what was wrong and I could fix it.
Throughout the two days the panel members continued to stress the importance of watching a documentary called “under our skin.” As soon as I got home it was priority one. As I watched, I found myself sitting with my mouth hanging open and my head shaking back and forth. No. I kept telling myself. No. I was not liking what I was seeing. The truth about Lyme was so overwhelming and frightening. The river of tears returned. The joy of thinking I could fix this changed to the dark reality of incurability and financial hardship. I had no idea how hard the journey of treatment was going to be. Just trying to find a doctor that could help me took a couple weeks. Plus I had to wait a month for an appointment and travel to Upstate NY for it. None of that mattered though. I wanted so desperately to get better. I was clinging to a thread of hope.
Featured Song: Time Bomb – Beck