Superpowers are Growing! Smell Sensitivity & Reactivity Increased!

My superpowers are growing! Can now smell cigaret residue on someone downstairs at the other end of the house…behind closed doors (and I have a really big house). MASK ON AT HOME. #underseige

There really is no where to hide.  Good times are rare and shouldn’t be expected as the norm.  Relish in the battle and the strength to hold on through attacks, because that is reality.  Yes, being constantly under attack gets old and we inevitably get tired, but be proud of your strength.  That’s something to hang your hat on, as the saying goes.

This night, and the coming days, just went south really fast.  Will be working off the effects of this for a few days.  “Working off” meaning fatigued in bed, probably with some brief neurological repercussions.

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    Fuel Your Special. Joy & Purpose Your Personal Unique “Normal” Frame of Mind.

    One of the most painful and frustrating things about being ill is not always the illness itself but the anguish of “missing out” on life.  But what are we actually missing out on?  After my recent medical improvements, I’ve had the chance to experience some things in life I’ve always wanted, or thought I wanted, because that’s how everyone else lived their lives and the lives I saw on TV.  If it’s on TV, it must be the right way to live, right?

    While I’ve had many amazing experiences, the “normal” lifestyle hasn’t lived up to hype I’ve fantasized about all my life.  More importantly, it wasn’t worth all the pain and disappointment of not doing what everyone else was doing.  Even when I was involved in school or band, I did things differently as workarounds or illness exemptions and so saw my differences as a bad thing.

    But I was comparing myself to other people’s definition of normal.  And just because more people, or at least we hear and see it more because it’s the life of those more vocal about it, we only see how we’re not living that way.  Oh, how much pain throughout human history has that caused people of all ages and health conditions and economic statuses to be subject to the illusion that they were lacking.

    How wrong I was.

    I’m writing these experiences to help those who are different as well as the family and friends around us.  It’s hardest when those closest to us desperately want us to be normal. It’s hardest when our joys and disappointments hang not so much on our own understanding but the happiness and sadness on our family’s faces of how we do according to their goals for us.

    There’s a million “normal” things I can’t do or experience and I was frustrating until I stopped fighting it and say, how does my unique experiences help me think and do stuff no one else would? There were times I could barely see and walk and it actually made me more efficient because of the workarounds I figured out, and I got more in tune with my thoughts instead of distracted by visual noise. I have an amazing photographer friend who’s nearly deaf, but he’s so in tune with people’s body language he anticipates the perfect moment.  Another friend with childhood cancer, shriveled up like he’s a 5 yr old puppet even though he’s 22 now, sought humor in his dire circumstances.  He got so good at it he’s now a comedian in a wheelchair.

    Only now at 32 yrs old have I really appreciated all the unique experiences and thoughts my illness has given me. It’s truly a gift.  The cost of that gift may, depending on your values, seem expensive, probably too expensive for what was earned in return.  But this illness and I are one.  The cost of this journey is inescapable, the only question is what was the fruit of that journey.  Funny enough, the celebrities that everyone looks up to and use to define “normal” are actually some of the weirdest, most unique individuals.  Some have weird personalities which makes them stand out, and almost all have insane work ethics rare in society.

    By “normal” worldly standards, I may have been shortchanged, and for much of my life I thought so and strove to be a fictitious version of normal I’ve found out doesn’t exist.  No one is exactly normal.

    The more abnormal one is, such as I, the more unique perspectives we can provide the world.  I may not be smarter, stronger, or faster than anyone.  There are many things I do that, if I didn’t do them, the world wouldn’t miss me as someone else would step in and do it just as well or better.  That’s the fear for so many people.

    But we would be missed, if we showed our unique ideas and techniques no one else can even imagine.  The world has enough blacks and whites, but its’ incomplete without our shades of reds, blues, yellows, cyans, magentas, and greens.  And that’s the truth.  My thought process, my creativity, is all born from how my illness makes me different.  I have shortcuts of thinking that makes me seem smarter, or work faster, but only because I my illness forced me to do things differently and faster.  I tire so easily and never know when I would be well enough to work again, so I must seize the moment and work as fast as I can.

    In that aspect, I’ve also learned to take every opportunity for I don’t know when I would even be awake during the day to have lunch with a friend or say sorry to someone.  An indirect consequence of that is the amazing friendships I’ve built because my immediacy makes friends feel appreciated and relationships feel genuine.

    I’ve now found peace within myself that I’m who I’m supposed to be.  I dig deeper into my differences and that fills unique gaps in humanity only I can fill.  The opportunities have come easier than when I fought my own existence.  For example, in 2015 I’m signed on as a speaker with The Brightest Star organization  that helps build dreams and self-esteem in abused and abandoned children and adults.  I’ll also shoot some photos for Vogue Italia as well as video projects I can’t discuss yet, and take our Stock Sessions investing 101 workshops to university campuses.

    There are so much we can learn from each other if we embraced the differences.  If, instead of saying “oh this is how it’s done, you’re missing out”, have the curiosity and the humility to ask, “why do you do it that way?”

    It is not in the similarities that we help each other grow but incorporating the differences, completing the color spectrum rainbow or filling in the periodic table.


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      Abusive Disease Makes Me Jealous of People in Wheelchairs and People with Cancer

      I used to be jealous of people in wheelchairs and people with cancer.   The most cruelest part of my impossible disease has been the complete unpredictability of every moment of my life.  With that comes instability.  Chaos.  Inability to have some consistency, even if it be trapped in a wheelchair or a routine of cancer treatments and expected pain.   At least for those people, I used to think, there’s some ground to build your life on, even if it’s swamp mud, it’s at least you know enough of what will happen in the next minute, next hour to plan your day.

      I don’t think I’ve ever touched the ground.  I’ve never really known what gravity in one’s life is like.  To know which way is up, which way is down.  You need gravity to have a foundation and go anywhere.

      Complete unpredictability is a most effective psychological torture technique to break a person’s will and make someone go crazy.

      I’ve often looked at people in wheelchairs with envy.  Some news reporter would say, such and such “lost the ability to walk and her life as she knew it was over.”  Yet, that person has a new life, predictable, that they can eventually get used to.  Yes, its a tragedy that they couldn’t go on living as they once did, but they had a new life waiting for them, only with a different set of rules.  I can’t commit to anything in my life, build any part of my life, and expect it to stand instead of vanishing randomly.  Not all, but many with handicaps can do rehab and build other skills with their now “modified” bodies, but still bodies that follow some rules so rehab centers can help these handicap people grow step by step.

      There’s apparently no correlation with the work i put in myself and the results. Without ever knowing you can get a certain result by putting in certain work, and have that result be constructive, progressive, encouraging, it’s nearly impossible to have motivation to do anything.  What i mean is, whether I try to get stronger or not, i have the same chance of getting punched in the face, hit by a hammer, washed in acid, or getting a tiny treat, it’s hard to find the motivation to try.  Doing the work has no effect on my life’s outcome.  I’ve often felt helpless and hopeless.

      i wish I could know what would happen next. Even if it’s something terrible, at least I can mentally and emotionally prepare for it instead of the whole of my soul exposed. How do you cope with that? If I am to die, it’d bring some comfort to know when and how, so I can say my goodbyes instead of constantly in fear of the unknown. At least allow my heart be settled!

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        How Do You See Things?

        You choose your world.  It’s up to you.

        “We do not see things as they are, we see things as we are.”  ~Anais Nin

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          You matter, whether you want to or not.

          You matter, whether you want to or not. The question is how you choose to exercise that influence.

          “On this mortal journey, we must never think that our choices affect only us.” ~Larry S. Kacher



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            Never Quit Becoming

            I told my friend not to expect my writing to be much good. My excuse was that I’m just not a good writer. Never have been.

            “So become a good writer.” He replied. Just like that. “If you want your book to be great, you’ll have to be a good writer. Otherwise, don’t bother. Because it’ll fall short of the magnificent work this raw material is made for.”

            So true. Everything I can do now, I learned. Even breathing was something I learned and had to keep working on. My health condition made every breath a struggle.

            I can’t tell you how many successful people and executives I’ve met that have unimpressive schooling. But they never stopped becoming someone better in their adult years. Meanwhile, many with a fancy degree that had the initial lead are now working for someone whom they thought would never catch up. Look up any successful person on Wikipedia and you’ll be surprised of many of their backgrounds.

            All of us are who we are today by becoming something different from a helpless glob of infant. So at what point do we start thinking that growing is unnatural, when it is in fact the opposite? Is a degree, a title, or an age the cutoff point for learning and growing? Sure seems like it for many people, doesn’t it?

            Many adults “experience” a lot of things. But how many of these experiences actually changes you? Do you approach classes or team competitions now with goals and the same accountability as when you were in high school or college? Or do you travel and say “oh that was fun” but end up not knowing any more of the culture and people as before your adventure? Doing doesn’t always mean becoming.

            What life would you miss out on if you stopped becoming someone more?

            If I didn’t learn survival skills on my own every day of my life, my disease would’ve taken my life long ago.  All through school, I always had the best grades in Biology class.  Classmates assumed I was smart in that subject.  Wrong.  I studied Biology 10x harder than anyone else, even those who’s grades were about as good as mine.  With my mysterious disease and every doctor having failed, I took it upon myself to become an expert at biology.  Grades and the time I spent on it didn’t matter.  It didn’t matter if it was hard for me to understand or that it took 10x longer for me to study.  Other patients think, “I can’t be as smart as a doctor.  I’ll just let them handle it. ” or “It’s the doctor’s job to know, not mine.”  Almost everyone I know who thinks like that have suffered because even the best doctors can’t possibly know everything.

            I’ve said this many times, one of my degrees is Mathematical Economics, but I hated finance in college. Spent zero time on it. Then, on my deathbed with a laptop I could barely control with my fingernail, I learned stock trading. It was one of the few things I could do with minimal typing and clicks. Each keystroke and click was excruciating. I would temporarily blank out from the pain. The subject matter I detested has become such a big part of my life as I’ve gone on to trade options, futures and consult for Wall Street professionals and even teach this stuff.

            I became something I’d never imagine I could be. I never thought I would be producing videos either. How wrong I was. I should just stop giving myself limits because these limiting beliefs don’t hold up.

            As my friend reminded me, we have always been growing, always becoming. If we’re not becoming someone better, stronger, we’re becoming someone worse and weaker. We all have an inherent ability to learn and grow, whatever that may be. Different people pick up different skills faster, but nothing is out of any of our reach unless we choose to be worse, not better.

            Adapting. Changing. Growing. Becoming. It is human nature. Don’t deny yourself of your natural progression.

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              Allergies Bringing Down the Mind: Immune System & Inflammation’s Link to Depression

              A big mystery of my skyrocketing improvements over the last 6+ years is the corresponding fall into depression and mental breakdowns.  For the first time in my life, my skin isn’t falling off and always in pain.  I can breathe.  I can sleep.  I can eat…sometimes.  My condition is a million times better than I ever dreamed of, and yet I’m depressed and emotionally unstable.  A few years ago, a psychotherapist friend helped me understand it’s probably PTSD from 30+ years of survival.  I’m sure it was part of the puzzle, but I’ve always been a very positive person, much more so than people a fraction of my severity.

              Susannah Cahalan (author of “Brain on Fire: My Month of Madness“) shared this Discovery article that answers some questions:

              Depression’s Dance With Inflammation: Why the body’s natural protective response to injury, infection and stress may have unexpected emotional consequences.

              “the role of inflammation in mental health might be more nuanced than once thought. It also helps make sense of other research suggesting that anti-inflammatory drugs may undermine depression treatment in some individuals. One recent analysis of more than 1,500 people found that those who took an anti-inflammatory drug along with an antidepressant were less likely to overcome their depression than those who only took an antidepressant.”

              The improvements the last few years have been due to the immunosuppressants constantly having the effect of reducing inflammation, which seems to have similar effects as quoted.



              “Now it seems like both the high and low levels could lead to depression: Yirmiya and his colleagues have done studies in mice for the past 20 years suggesting that a specific level of cytokines is needed to ward off symptoms of depression.

              As Yirmiya points out, these molecules at normal levels have many important brain functions associated with learning, forming memories and making new neurons. So, what do we make of inflammation’s double-edged nature?”

              Having been born with my condition, I suppose my brain had adapted to functioning on high levels of inflammation…now that’s changed and nothing feels right.


              My condition is a form of allergies, but I don’t tell people that anymore.  My overactive immune, triggered by the slightest external sources, breaks down my body in very painful ways.  It’s not just the skin, which is what everyone sees, but also internally in my gastrointestinal tract, lungs, and even nervous system.  Allergies can affect your nervous system, eyes and brain?  Yes. I’m proof of that.

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                People Need To Know Your Illness

                I always hated talking about my own disease, partially because I didn’t want to think about it and didn’t want to be defined by it. But as I’ve been telling bits of my story, it’s connected me to tons of others who suffer and thought they were alone. Those are the people I want to reach, not society in general. I think many of us try to hide it to make the world seem peachy, but then people think there’s no problem and end up not doing anything.

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                  What Would Be Your Life’s Grand Finale?

                  What’s the one thing you’d do if you didn’t have long to live? A few months maybe? This isn’t about what tops your bucket list. This is about getting to know yourself and what’s truly important to you. You’re only forced to think about essential vs. non-essential when things are limited.

                  I’ve been in borrowed time the last 6 years. The only medication that’s keeping me alive is also very toxic and should’ve wasted my liver & kidneys all this time. Earlier this year, the only option it seemed was to get off this medication and gamble on a brand new treatment that wipes out my immune system. So, for a year after, I would have to be isolated in a clean room. Anything, even dust, could be deadly. I’ve gotten 6 or 7 extra years, which had been nothing short of spectacular. But once again, staring my own mortality in the face, I looked inside myself again. Yes, optimism is a must, but what if these last few months are it? What do I need to do that I CAN do?

                  This isn’t a fantasy of anything goes. This’ll probably have to happen in or near a hospital somewhere. I decided to write my autobiography. How I survived the unimaginable and managed to do many things even healthy people couldn’t. Sure, I could continue to work on the many things I’m good at. But there are tons of other people who are better and will carry on that work. I’m not adding anything others can’t. But my life and how I lived it? That’s a gem. That’s worth leaving behind that others will need.

                  Luckily there’s a safer, experimental treatment I’m supposed to test in the fall, but work on the autobiography won’t stop.

                  A friend of mine from the Bronx would want to bring a giant American music tour to Brasil, where he lives now. Once I’m cured, I’ll put on this show with him.

                  What would you do? Let’s assume you do all the important things like spend more time with the people closest to you and making amends. After all of that, what would you do?

                  Being Used For Good. Helping a Homeless Deaf Man

                  Yesterday I got to help a deaf homeless man without knowing I was needed at a certain time and place beforehand. I was on my way back from the Temple and meeting a friend for dinner. But I was early. I decided to swing by the Wednesday night Institute class. When I opened the door I found my friend Christian and two missionaries on the floor of the hall using sign language to communicate to another man. He looked ragged, like he’d been on the streets, and had a small suitcase. Upon finding the class overcrowded, I rejoined the group on the hallway floor. I learned that the man was on disability but he wouldn’t get his check for several days. He was back on the streets without a place to sleep. He had been hiding near places he’d lived. We brainstormed of parks, parking garages and hidden alleyways for him to hide in, but with his hearing and back problems we couldn’t come up with anywhere suitable. None of us had ever been on the streets, and secretly thought of how grateful that we had our own beds to return to. Just before I had to leave, I suddenly remembered a good buddy who had been homeless when I met him. He knew the ins and outs of living on the street, especially in this area. I called him and sure enough, he had places for our homeless friend to stay. Amazing how little miracles happen. I wasn’t even supposed to be there last night. I sat with them for just 10 minutes and things worked out better for a man I’ve only met. Best 10 minutes of the week.

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