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How I Cured Morgellons
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12/29/2017 3:46:57 AM |
Many of you knew I was going to Mel’s home in Reno to visit over the holidays. It was an interesting trip, and I learned many things about how Mel “does it”...how he manages his life so that he can offer the kind of support he does to toxic disease sufferers. It's been said that people come into your life for a reason or a season...and I believe the relationship that Mel and I have shared has encapsulated both, although the referred to “season” is a rather short one. I apologize in advance that this will be a lot of info...and even though it's basically about what's happened between the two of us, which could potentially be a yawner for many people...I offer it because it's much more than that. I offer it to paint a picture of what is happening in Mel’s life...and because that has a direct effect on the site and those of us in the community who depend upon it. Many will be affected if there are changes on the website...especially if Mel is no longer able to offer his services as creator and operator of the site, and because of this, I'd like to encourage all of you to please read this entire post. Again...I apologize for its length. I've tried to space it out a lot for easier and faster reading. Sometimes a chain of events can leave a person kind of confused and feeling a need to make sense of it all. Because of this, I wrote the following to Mel...and I did so to help the two of us get a perspective on things, and also with the idea that it could be shared on the site as well so that others could have a clear picture about Mel’s current reality and how that could affect them. I thought this would be a good thread to park it in, and it follows. Dear Mel, You are exhausted...physically, mentally, and emotionally because of the increased demand of the site and your difficulty in turning away anyone who contacts you for help. As per the increased demand of the site...the numbers tell the story, and the numbers are staggering. What you showed me blew my mind. You opened a window to what you deal with daily. You showed me details. There is a way to see the activity on the site at any given moment, and we took a moment to look at this on Christmas Day. When we looked we could see that there were people from every part of the world on the site...I cannot even remember all of the different countries...there were too many of them...but they were from every corner of the globe. I think at that very moment...on Christmas Day, there were something like 96 people on the site. You said that was a very light day. This tells me how much this disease is out there. I mean...how many people would just randomly read a Morgellons Disease (MD) site on Christmas Day unless they were having concerns, and that's putting it mildly. Your generosity toward those of us who suffer from toxic disease is remarkable. . This is clearly evident in what you do for people you don't even know, and I can personally vouch for what you do for one person. I want to describe what your generous nature looks like on a one on one basis. I saw what you did to prepare for my visit and you did all of this while not slowing down one bit on your self-assigned site responsibilities. Your home is so warm and inviting...and you make the most out of every little thing you have, though it's obvious to me that you haven't purchased anything new in years. Everything in your house is well maintained and pristine. You put things together to create a welcoming environment for yourself and anyone who might come to visit. You are an incredible cook, and had gone to so much trouble to stock up and prepare things so that I would have a most delightful experience. I've listened to your shopping strategies, and you could create another whole website about how to save money buying food.. I don't know how you can cook like you do and spend so little, but I've figured out that I spend at least twice as much as you do at the grocery store and produce about 25% of the quality of cooked meals...and I'm considered a decent cook. You are so careful with your money because you know how...and because you need to do so to survive. You produce wonderful meals because you are so clever and creative. Your kindness to me is just one example of your consideration for others, and you extend this spirit of generosity to anyone who comes to you for support. However...all of this has taken a toll on you. You've had to isolate yourself in your home over the last nine years to accomplish what you set out to do...and you've done that and more. How you've done this, I don't know. I cannot even conceive of doing what you do for a week without losing my mind and becoming depressed, but you do it day in and day out and you've done it for years. I've said this before, and I don't want to belabor the fact...but seeing this first hand in visiting your house, it had, for lack of a better term, a very sobering effect. I could see that you have to have a system to make all of this work. It was clear that having things in a certain order is how you've managed to survive and get the massive amount of things done you do on a daily basis. You're not used to having someone in your environment even though I know how much you wanted me to visit. Having someone else in your house was stressful to you even though you wanted me to be there so much, and you were enjoying the company. I saw that you were exhausted from all the prep and the subsequent changes in your sleep patterns, and because of this and because of other recent stress you've been under, you started to fray around the edges emotionally. I came with a cold. I didn't realize how bad it was until I got there. I'd had very light two day cold-like like symptoms last month and thought it was going to be pretty much the same thing this time. I haven't had a real cold in three years, so I didn't see this one coming. That is a good bad thing...good because it indicates a change for the better in my immune system, but bad because it could put you at risk to catch it. Surprisingly to me, the cold got worse in transit...much worse...and it felt like the change in weather had an effect on my symptoms too, although I don't know if that is true or not...it felt like it though. The weather in Nevada is so much colder than I'm used to here in Texas. All the stress of the last few months plus prep for my visit had you at the end of your rope and this reality, along with my cold, presented a potential to compromise your health. I should have recognized the situation and backed out of the trip. I started to...but it would have been at the last minute...so I reasoned my way out of it. I wanted to see you. At the time I left my house, my cold wasn't that bad and you’d said you had a slight cold too...so I thought that would make it OK. I also knew how much you'd prepared for my visit and how excited we both were, and did not want to disappoint you (or me) after you'd gone to so much trouble. We did have a great time though. You took such good care of me. I felt bad about letting you do that, but also realized that my getting in your road for how you do things made you very uncomfortable as well. That put us both in a difficult position and added to the stress. I could see all of this was exhausting you, but because of how you like things done, I was limited on what I could contribute to lighten your load. You'd bought a little Norfolk Island pine to decorate for a Christmas tree. I was loving it...that was so 1970's...clearly our era and I remembered having one of those for a Christmas tree in 1976. I brought tiny colored lights and little bows to decorate it because I know you can't put anything heavy on one of those delicate trees. I used those things plus the shiny stars you’d bought and decorated it when you took a nap. It was so much fun to see your excitement and wonder when you saw the decorated tree after you woke up. You were like a kid with it...you smiled and laughed and made so many excited remarks. You told me you hadn't had a Christmas in Over 20 years...and had never even really celebrated Christmas since you'd gotten sick...and that was 13 years ago. That brought tears to my eyes. I so enjoyed watching you play with the lights and the battery packs. You couldn't stop fooling with it and admiring it every time you walked by. Your reaction was one of pure delight and your happiness was contagious. You were so excited over the presents too. All you wanted to do was look at them and rearrange them under the tree. I like to wrap presents and you loved the fancy wrapping paper I'd had sent to your house before I got there. You made such a production out of it...and your gifts to me made me cry and still do every time I think about them. I know you are strapped for money...but you were so creative...and found little things with so much meaning. You know I love your OCD arrangement of food in your refrigerator and had admired it...so you bought me little plastic bins from the dollar store. You also found things around your house you already had that you knew I'd like and packaged them up for me and put them under the tree. Your love was evident in everything you did for me and there was nothing I could buy that could even come close to that. The meals you cooked for me surpassed anything I could find in a restaurant...and your arrangement of your table showed how much you value the whole experience of sharing a meal. The love you put into all of this was clearly evident. Your putting the table by the fireplace created such a nice ambiance...the food was delicious...but the company was even better. You are a charming host. On the third night I was there, I got up after you went to sleep when I realized there was food sitting out that wasn't covered and that needed to go in the refrigerator. Not knowing where everything was in your kitchen and not wanting to dig around, I decided to cover it up with a plate before putting it in the fridge because I did know where the plates were. Being about a foot shorter than you and your plates being on a high shelf made it difficult to see that you had a bowl stacked on top of your plates. When I picked up a plate, the bowl on top fell down on the counter top and broke loudly. That startled you awake and what I saw afterward could only be described as a dramatic melt down when you came running in the kitchen to see what happened. I don't even think you were fully awake...and you were so upset. I knew you were at the end of your rope and hanging on by a thread, but your actions at this point illustrated all of this to leave no doubt in my mind. I could see my visit was having a toll on you even though you clearly wanted me to be there. It was also hard for me to feel so bad from the cold and not be in my own home, and both of these things, along with my concerns about putting your health at risk due to my cold, led me to the decision to go home a few days early. The incident upset us both and made some things clear. The most obvious is...you need to do something very different Mel. You cannot continue to serve the people of this community with the numbers of new sufferers exploding exponentially. You cannot continue to do this and have any hope of maintaining health or sanity or any hope of having a personal life. You are one person...and you've stayed well by staying focused and disciplined on the details of your physical recovery...the "sum of the parts" that you tell all of us to do. However...you've preached this to all of us, but you've neglected yourself in things that would regenerate your spirit...like enough rest and escape from the ever present and increasing stress of maintaining this monster of a task you've set forth for yourself. You've maintained this by forgoing even the most basic things most humans want in life...like a close emotional connection with someone who could love and appreciate you. You've had to do this to keep the site afloat...and I personally think it's a tremendous sacrifice. Managing all of this alone is a Herculean task...but having to do this and worry about money is nothing short of outrageous. Where would we be without you? Real sick. That's the bottom line. Who would do this if you didn't? No one. This is clear because when you are brainstorming to try to figure out who might replace you, so you can someday retire (a really good idea since you are, after all, age 72), you can't even come up with one person. Why do you think this is true? It's because who could or would basically dedicate their lives to no time, no money, no relationship and never ending and ongoing stress? You MUST do something different about getting compensated for all your time and effort or you will find yourself ending all of this sooner rather than later because you cannot continue as you have. Your meltdown was clear evidence of this. What is next? A nervous breakdown? A heart attack? Death from exhaustion? Please know I'm not saying you're weak. Heavens no...who in the world could have done what you've already done? I for one am so thankful you have though because of the difference you've made in my life. I'd be in very bad shape if I hadn't found your site and learned what to do about this monster called MD. We all know the pain of reaching out to the medical community we've trusted for our whole lives and realizing that we were not only not going to get any help, but that we were going to be denigrated by being called delusional. The irony of paying for this abuse is not lost on any of us...and none of this makes it any easier to deal with this ongoing nightmare. However...there is one person out there who is a friend to all...and that is you. Thank you from the bottom of my heart. I cannot say it enough...but...my gain is your loss...and multiply that by the massive numbers of people benefiting from your expertise and generosity, and it's really unbelievable that you haven't fallen apart many years ago. Your friend and doctor Shannon tried warning you when you decided to start the website, that this could have a negative effect on your personal health 9 years ago, especially after all your had suffered to restore your own health. I saw all of this after your melt down and because of your stress level, and because of my misery with my cold and concerns about putting you at risk for catching it, I decided to cut my stay short and go back home. In the clarity of the next morning, and before I left for the airport, we discussed it. It was very bittersweet and sad, but all of this has made it clear to both of us that your lifestyle precludes you really being able to have a relationship in your life. It was a very sad moment when you realized this…and we both cried. Before I came to visit, you'd said you wanted me to stay the whole week so we could see how things worked out when we'd spent that much time together. But...you further explained that you needed to see if I could adapt to your lifestyle. Nothing was ever mentioned about what I might want or need in a future lifestyle or relationship. I've come to realize that this is not because you're self-absorbed, it's because of your dedication to doing what you promised God you would do if you got well. Because of your commitment to the community of toxic disease sufferers, you have to maintain strict adherence to your rigid schedule and routine to even attempt to get it all done. I'm a generous person, and I care deeply about you and others and what you've set forth as a life mission for yourself. I'd love to support you in all you do...but for me to do this...or for anyone else to do this, it would require a commitment to forgoing any type of life outside of the confines of how you live. It would require this day in and day out...a sacrifice of schedule, location (because you have explained that the environment of Reno contributes to helping you maintain your health), and money. I cannot leave my job and other ways of generating income that I have, in place where I live. I cannot replace those in Reno. We realized much of this before my visit and tried to figure out how all of this could work with us being 1800 miles apart. The upshot is that we really cannot realistically figure out a way to do this, even though we care deeply for one another. Because of this, we knew my visit was an emotional risk before I even came, but because of our feelings for each other, we decided to do it anyway. What unfolded during our time together made it clear that our being in a relationship together under one roof, would require a sacrifice that I cannot make...it would require me adapting to your rigid environment that allows you to continue the grueling day to day task of maintaining your dedication to the toxic disease community. It would require me making the some real sacrifices, but in a different way. I saw in the short time I was there that I had to tiptoe around you and be so careful not distract you from your schedule so you wouldn’t tire out and not have enough energy for your duties…and this was on a holiday… I cannot imagine what it would be like during a regular work week. I saw that even the smallest things could derail you from this rigid schedule and saw that any departure from your schedule created significant stress for you. And so...if we were together, not only would I have to tiptoe and be quiet and constricted in my own home, I'd have no hope of having a partner who could enjoy the fruits of the years of labor we've already put into the work force. That is what life should be like in our later years...not just years ahead of of facing grueling nonstop work and stress. I suppose this means I'm not as generous as you are...but I also know my limitations. I think everything happens for a reason though...and I think the outcome of what happened on this visit makes that reason abundantly clear. The events that transpired, as described above were enough to let you see that something has to change with your time and with the stress of your financial situation. You cannot continue to support this community by giving away every resource at your disposal, including all of your time and energy. You will have to think of a way for this website to at least pay for itself, and that includes some kind of an income for you. Besides the website, you have the He Cures All Foundation to manage. HCAF is a non-profit...and it is basic operating procedure for any non-profit to have some sort of compensation for the director. It's not selfishness Mel...it's survival. NO ONE in his or her right mind would begrudge you this. Your needs are so small and you are so good at managing resources. It's not like you're out partying or buying expensive items. You are just trying to survive on the very basics of life so you can continue to offer a very real and needed service to others who are suffering so much. Right now, your most driving focus is to try to come up with ways to find money to offer those who cannot afford to buy their own supplements. Because you are now depleted of reserves from doing this for so many years, and because you are so focused on helping others, you often forget your very real financial situation and then end up needing to sometimes put out a plea for your Go Fund Me account when things get so dire. In my opinion, this is not acceptable. You should never have to ask for support through a Go Fund me. Considering all you do, this is just wrong on every level...and I'm speaking not as someone personally involved with you but as a reasonable thinking individual. You have told me you are working for God...and anyone who reads this...trust me...this is a true statement. I've never seen anyone who is so devoted to helping others that he will not give it up for even a day. I had to drag him out of his office on Christmas Day. Really...this says much about his dedication to doing what he thinks is right. I was a little upset with you, Mel for not getting out of the office completely for that day...but you told me...Karen...there are already so many emails today from people who are scared and suffering...and the disease doesn't care that it's Christmas Day...and you were right. I was sharing this with my best friend...and she asked if you were codependent...or what was wrong with you that you would neglect yourself so much to offer such a thing to so many others. Her question did give me pause for consideration, and I thought about it for a while. That's when I remembered last year. I'd just started talking to you last December. I'd contacted you earlier in the month for the first time to book a coaching session. You talked to me for that session, and when my funds were depleted, you still called me again. You called me on Christmas Day last year to see how I was doing. I wasn't the only one you called...you did this for so many others as well. I remember crying after I'd gotten that call. I was so sick at the time and also living the same grim reality most MD sufferers are dealing with from the pain of the illness...and from family and friends not really understanding the disease which, as we all know, leads to a tremendous lack of support at our darkest hours...not to mention the emotional pain of what can only be seen as a type of betrayal...and the pain of thinking life would never be the same again. Our family was going to celebrate Christmas on another day last year and that left Christmas Day with me feeling very alone and sad...though I'd never have let anyone know this...my pride wouldn't have allowed it. Because of this, a phone call. from someone who was, at the time, a complete stranger had a huge effect on me. I couldn't believe you called me on that day to just cheer me up and it meant more than words can describe. I'm sure it meant much to all the others you called as well. And so...this memory left me feeling pretty humble...and again realizing why you do what you do. So maybe you are codependent…or some other thing…but I know you and know you do this because you understand suffering so well… and because you have suffered so much in your lifetime, you have a deep and profound empathy for others who suffer too. And for the sake of anyone reading this, I'd like to offer the following as well... Mel can be gruff sounding at times and sometimes people...especially those of us from the South...have a hard time with it. I sure did at first. It was confusing...here was such a kind person, but also someone who sounds like he's being rude sometimes...but I now think that this may just be a difference between how people from different regions interact. He tells me part of this is from being from NYC...and, in my opinion, those differences in how people communicate can, at times, be pretty startling for someone who is used to more gentle types of interactions. Mel is also not very patient at times because he is stressed out from doing so many different things for so many different people...plus...that's part of his nature and personality. Lol...my my...what God does to teach us life lessons is very spot on sometimes, isn't it Mel? However...that doesn't change the bottom line. He does this because he made a promise to God and because of this, and because he is so very compassionate for anyone who is suffering, he has depleted himself down to the wire. Mel...you have brainstormed ways for the site to generate some income...and you need to do it...and you need to do it soon. We have discussed this many times...and you have discussed the possibility of what you call "pay per view" which is basically a nominal fee per month or year to have access to the site and all of the information it provides. You talk about it, and then you worry about it and keep continuing to kick the idea around and around...but you need to get off the fence and do something soon. Doing this would offset the financial burden of running this thing, and offer you at least some relief. It would offset it without having to ask much of all the people who come to you for help. It would spread out the financial outlay and still make it easy for any one person to afford. It would be a very nominal cost for any one person, And so...I think you need to go to your "pay per view" or subscriptions or whatever and do it soon. With all the predators, who take our money and offer little real help, you for nine years have offered the answers for free. We all benefit from what you offer us on the site, and, at this time, there's no one to replace you if you burn out or expire from overuse. Doing this will help you to continue at least for a few more years until someone else comes along who can take over your duties (unlikely that it'll be one person) or until you can set up a system for more experienced members to mentor the newer people and someone to oversee and manage this system. As for the two of us...and as we both know and have discussed extensively...we will remain friends. That will not change, but...as we also know and have discussed, it's clear that because of circumstances described above that this long distance friendship will be the most we can manage. I admire you deeply. Love always, Karen | ||||||
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