It was the summer of 2006, whether it was July or August I can no longer recall. What I do recall is the sheer terror I was experiencing. I was in the garage, sitting in a lawn chair and at the end of my rope. Tears were streaming down my face and I kept saying, “I don’t want to be here … I don’t want to be here …” over and over again. I was experiencing something so horrifying that even now I cannot convey it through words. I had an extreme fight or flight feeling, it was an unbearable feeling that I could no longer endure. Under my skin (I thought at the time) were thousands of worms crawling, squirming, and biting me. It was painful, scary, and extremely unnerving. I was literally coming unglued.
Suddenly my wife came into the garage with the cordless phone, it was our pastor on the line. When she handed me the phone I couldn’t speak. I could only cry. My pastor kept saying “What is going on …” and each time I tried to speak I burst into tears, this went on for quite some time until I finally got it together enough to tell him I had what folks were calling Morgellons. He hadn’t heard about it. So I explained it and told him my body was absolutely infested with parasites (because that’s exactly what it felt like). Now he had been on mission trips and was not unfamiliar with parasites and had taken antiparasiticals himself in order to travel to certain areas. I was taking them too at the time (on my own which I DO NOT recommend). He told me he knew a doctor that I could see and then made me promise I wouldn’t do anything foolish (things were worse than I’m letting on here but I need to be sensitive to those who might be in that dark place right now). I felt extremely relieved, help was on the way. It was the first time I had told anyone other than my wife that I had what appeared to be Morgellons (and even she didn’t believe).
So much transpired before the events described above that I could write a book, strange things were happening to me. I had what appeared to be glitter pouring from my forehead. The glitter would cover my shirt and people would actually ask me about it at work (I could see it fall past my eyes as I worked). Tiny black gnats were around me constantly, and indoors at work. You cannot imagine the embarrassment. I am sure they were hatching out of me, in fact, I know they were. When I walked into the team meeting everyone immediately began to scratch their nose and face, it was instantaneous too as soon as I was in their line of site. I was afraid they would put things together and realize the reaction they were having was emanating from me. And there were other things too that I simply cannot mention as they are, quite frankly, to disturbing to recall. The mere suggestion that I caught this by reading an article on the internet is utterly ridiculous. I will be writing a follow up article that will destroy that argument on its face.
I went to see the doctor my pastor set me up with. He asked me the typical questions, “What countries have you traveled too …” and so on, you know the drill. By the time the appointment was over he asked me if it was okay if he could call my wife. I knew what he was thinking, “This guy is off his rocker” and I was at the time, at least in part. I fully admit that. I told him “No” and left. From that point on I knew I was on my own. What was happening to me was beyond imagining or believing to someone who wasn’t experiencing it.
If you Google “Mans top ten fears” you will find “Fear of Spiders” and “Fear of Disease” in the top ten which is an interesting perspective on human nature. What I was experiencing were both of these wrapped into one singular horror, only it wasn’t a phobia, it was a real physical “thing” occurring inside my body. I had what felt like bugs crawling under my skin, and sometimes, the movement felt like big things moving, as if there were worms several inches in length beneath my skin. I’m sure by this point in this blog post any doctor reading along has already made his or her decision that I’m either delusional, a drug addict, or simply plain old crazy. But none of these are the case. I am a software architect, a very good one, and the President of a successful software company to this very day.
I could barely function I was so frightened (at this point I hadn’t really become sick yet but that day was coming and is not covered in this post). Imagine the absurdity of my wife asking me what I wanted for dinner as I sat there feeling what appeared to be hundreds if not thousands of “things” crawling under my skin. I mean “How you can you talk about dinner? Do you know what the hell is happening to me!” Of course, I did not say that out-loud. No, instead it was representative of what was racing through my mind whenever anyone spoke to me. I have no idea how I managed to keep functioning professionally. What was happening to me overwhelmed my “normal” life and I found myself living another “secrete” life. A life I couldn’t (and still cannot) tell anyone about. And this “secrete” life was full of fear, but I had to maintain the illusion that everything was alright or else lose everything. Now, mix into this an incredible feeling of panic, of flight or fight, and the realization of knowing that no one was going to help me, not doctors, no one. The world that once made sense to me, that was fun and safe seemed to be slipping away. Not knowing exactly what it was that was causing the crawling, biting, and stinging I began to suspect anything and everything. Yes, when doctors see a Morgellons patient they (we) are messed up, fearful, half delusional, no doubt about it. However, this comes after Morgellons and is the effect, not the cause. It is a direct result of the horrifying experience we are thrust into.
To the typical Morgellons patient that has been dealing with this for a while the fear of parasites has probably worn off. You realize most of the world deals with them and suffers from them. It is really only here in North America where the very concept of parasitical infection is almost always denied outright. Amazing how this one continent is simply devoid of them. This even though the CDC states that 14% of pet owners are infected with their pet’s worms (and you know the real number is much higher because testing misses most parasites). Considering how many homes in America have pets (if the CDC statement is correct) then we are talking tens of millions of people in America alone infected with their pet’s worms (but I digress). I am not saying Morgellons is worms by any means, only that it often feels like it and it’s dismissed outright even though this is fairly common in the most of the world, including our own as it would appear according to the CDC. Who is going through life with blinders on, me or the doctor? But don’t let me frighten you. I am only saying this because given the statements from the CDC above and the fact that it “feels” like we have worms the refusal to even examine us is well, negligent at best.
It’s hard to separate anxiety from fear but if you suffer from anxiety (and I didn’t before Morgellons) you know the difference between fear and anxiety. Since I was on my own I did what most in my situation would do, I started looking for answers. I researched and posted on forums. The forums were good from a support perspective but also bad in many ways. People love to post every new scary parasite article, ponder every horrible thing this could be, post conspiracies about population control, and intentional infection. They like to share horrifying photo’s of things coughed up, pulled out, or dug out of a stool sample, everywhere is some bizarre parasite (or so it is said). Also, sometimes dangerous things are suggested as protocols, and I did some things I really regret, things that could have really hurt me. Now, before you get mad at me, I also did those all of those things at times, I was right there in the thick of it all. I am condemning no one. We are on our own having been kicked to the curb by the enlightened ones.
All of the above can lead to extreme anxiety and fear (which will deplete you of Magnesium and minerals your body needs). Some boards are safer than others however. If you find yourself hitting a forum in an almost addictive fashion and yet you hate doing so because it fills you with fear then you probably need to stop surfing that or those forums. It’s more important to heal than to find the cause. Instead pour your energy into getting better rather than reading technical documents you barely comprehend.
Unlike a cancer patient who is diagnosed, offered a range of treatment options, and then surrounded by compassionate, lovinig family members we are mocked and abandoned, not only by the medical community but often by our family members. I have a wife and 3 children, had I been alone things would have been so much harder. However, this caused a ton of angst between my wife and I at one point. If you live alone my prayers are with you, I know it must be terribly difficult for you.
Because of my contacts with certain folks I receive letters and emails from sufferers from time to time, they are heart breaking, sometimes scary, and make me realize how in the midst of all this I am very lucky. Others have and do suffer far worse than I ever did or have. They are often totally alone, unable to comprehend what is happening to them, without health care, single mothers adrift with no one to help, abandoned by their families, some have even walked away from homes sure that they were so infested they had no other choice. Finally, many have been treated most wretchedly by doctors they turned to for help. Many a times I have ducked down in cube and wept upon reading them, and at times, I have had to leave work and sit in my car in the parking lot to regather myself. A few of you know what I am talking about and have seen those letters. There are many working silently behind the scenes that you never hear about, I just feel it’s important to let you know about such things because it’s comforting to those suffering. All I do is write about things, others are in the trenches, actually doing things, offering their time and energy, like Trisha Springstead and many, many others.
For every one of us here reading this there are a thousand out there right now who cannot get a handle on what is happening to them, and that is probably an understatement. Many will lose their homes and every dime they have to their name before this is all over. You have all read such stories.
The Battle for your Mind
If you suffer from this then you know there is something almost unholy, menacing, and terrorizing about Morgellons. To top it off we get to go through the experience scorned and alone. You might end up labeled DOP or worse. What the doctors refuse to realize is what Amelia summed up so well in her response to the Psychiatric Times.
From a psychiatric standpoint, it is inappropriate to use the term “psychological aberrations” instead of a specific psychiatric diagnosis or condition. Next, the allegation that the patients “drift” from one physician to another implies a judgment on the nature of the quest to find a health professional who is committed to finding relief for the patient’s suffering.
Such patients are further maligned for waiting until they present as “an emergency” (sic). If a patient is repeatedly turned away by one practitioner after another, it is understandable that they might be reluctant to seek help until the condition is perceived as an emergency.
By the time we get into a doctors office we are extremely upset, stressed out, anxious, fearful, and maybe even partially over the rainbow. This is quite understandable and I say a completely natural response given the experience. It’s astounding that doctors cannot understand this basic human reaction to such a horrible situation.
The fear that mounts up and rides side by side with Morgellons can in fact be worse than Morgellons itself.
Deciding to Control What You Let Your Mind Dwell Upon
At times, fear is going to wash over you like a wave, you might even be gripped by it right now, unable to escape its grasp. Fear still sweeps over me even now at times. It is extremely important to your recovery that you begin to overcome this fear. You might find that counseling or psychiatry helps and should feel no shame for seeking such help. For me, I simply fight the battle in my mind each day when presented with the choice to panic or stay rational.
When the crawlies hit me I can panic and start thinking about what horrible thing this crawling sensation might be or I can simply choose not to entertain such thoughts. I can control Morgellons with my protocol for the most part but if I let my mind run wild with speculation and again become obsessive about finding the root cause, wasting every waking hour on the hunt, I know I will get worse. The stress, fear, and anxiety alone will ensure that things begin to go downhill for me again.
You can push so hard and freak out so bad that you can end up like Gillian Penkethman in this article and be involuntarily committed. I have corresponded to people that have been locked away and there have been some mothers on forums who have had their children taken away. If you need medical help by all means seek it, but be calm. I never mentioned the word Morgellons after that doctors visit mentioned above. After that I merely talked symptoms.
The other day I watched a video of a person holding a lint roller up to a thread that was coming off her couch, and the thread (which was a frayed thread the from the couch) was attacking the lint roller (as it was stated). And then several folks chimed in stating to stay away from it and such. Now, I’m not trying to be cruel here, believe me, I was over the edge at the onset of Morgellons. But clearly in that video the thread was attracted to the lint roller by nothing more than mere static electricity, it was painfully obvious. Don’t let yourself get into that mindset where you are obsessively examining every thread, fiber, and spec and seeing the boogie man where there is none. I realize that sounds condescending but I’m merely relaying what has proven to be so important in my feeling better. If you are spiraling down that path it’s time to pull up.
So what is your Decision?
Start today letting go of Morgellons and begin to reclaim your life back, laugh, have fun, don’t be afraid of the outside. Sure, if you’re a sufferer you have it, but you aren’t controlled by it unless that is you choose to be. Each and every day you need to resist the fear until you reach the place where you are no longer temped to “stay in wonderland and see how deep the rabbit hole goes …” I am in no way making light of Morgellons, it is a serious physical problem and very real.
There is so much left unsaid here, we will touch on this topic much more in the future. If you are a family member helping those with this condition hopefully you have gained some insight into what your family member or friend might be going through.
Mr. Common Sense