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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      Breathing On A Plane :: Utah Medical Trip 5.21.14

      BREATHING ON A PLANE. THIS IS “NORMAL”

      Had my camcorder out crossing the Tarmac and up the back stairs into the rear entrance of the plane. As soon as I entered the door, I caught a whiff of scents in the plane that immediately made me uneasy. Really noticing the tons of smells in the cabin from people. Playtime is over.

      I put my camcorder away and completely focused in my surroundings, especially with my nose. Every person I pass on my way to my seat I’m keenly aware of their scents, the texture of their clothes, their carry-ons. With each careful breath I decipher more and more smells in the cabin. Perfume, deodorant, lotions, creams, hair products. Smells of chicken, cheese crackers, vegetable oil, and other food fill my nostrils and it chokes. Also smelling some fuel and exhaust from outside the cabin. Taking shallow breaths. Fewer breaths. Each breath filled with smells feel uncomfortable in my mouth and throat. Opening AC vent for my seat on full, but with the engine still idle on the Tarmac, AC isn’t strong enough to clear the air around me. I lift my head up and point my nostrils at the vent, hoping to catch more of the gusts of oxygen. I imagine myself breathing through a snorkel tube underwater.

      We move onto the runway but I barely notice. My attention concentrating the quality of air I’m breathing and noticing any scents that I still sense. Suddenly a bit of sesame and maybe margarine scent irritates the back of my nose for an instant. The engine revs as we ready for takeoff. The AC starts putting out a strong funnel of breathable, cool air.

      I get to relax a bit and pray for a smooth flight that everyone gets to where they want to go. I’m thankful for the AC so I can breathe and not take gasps of breaths, and thankful the flowing air doesn’t rip at my skin as it used to when my skin was torn and damaged. Now, waves of air flowing on my face and arms actually feels therapeutic. We’re at cruising altitude and I seem to be on for now. Didn’t even have to break out the mask or rescue inhaler. We’ll call that a win.

      I love being around people, but you can see how just 5 minutes in public can be exhausting. This is normal. This is how I get through my minutes, hours, and days.


      Stella’s Oil & Salt Eczema Bath Success Story & Message

      Stella’s mom had Stella try the Robathol Oil and Salt bath that I recommended (and use daily).  Got this amazing message about Stella two days later!  Totally made my day, week, and month! Look, she’s even well enough to play in water.

       

      “So I’m doing 1 cup of sea salt and a cap full of castor oil (instead of Robathol). After the first day it seemed to make a difference! Her skin sure felt moisturized after the bath! I need to make sure I keep up on it…

      I’m going to check her in a minute. She seems to be itching less for sure. The other morning her redness was almost completely gone!

      Stella’s skin has been helped do much by the oil and salt in the bath!! ”

       

      Each day I get a message like this I feel pure joy!  I know exactly what little Stella is going through and glad my journey through the minefield first could clear up a path for her to follow.  She’s sensitive to foods, fragrances, and smells just as I am, so we’re constantly under attack, body fighting, and uncomfortable.  Happy times are hard to come by but we love every moment of it!

      Stella’s itching:

      “stella can scratch and scratch and cry and scratch until it is an open wound and is bleeding… it’s such an awful thing to witness.. it’s like she’s possessed and she can’t stop with the scratching… with those baths you recommended and now doing that it’s making such a huge difference for her!”

      Stella’s chemical allergies:

      “Even friends or family that come over and hold her… Seems like they make her break out every time.. Probably perfume or something. I have made my parents switch laundry detergent and different things so they don’t make her break out..”


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        Unlimited Wealth That Buys Everything

        If you inherited unlimited wealth in the form of a resource, would you spend it to acquire everything you’ve ever wanted? Few people realize we all have something others desperately need from us, that which costs us nothing to give, but in return can receive the world. A kind word, a friendly smile, a hug, an honest conversation, or just asking someone’s name. None of this cost me anything but has gotten me more than money can buy. Human connection is the most powerful thing, not money.

        While with enough money the effect can be immediate, real connections and networks last a lifetime. The value grows stronger with time and doesn’t end when you stop paying them. People worth more than I can imagine are happy to give up their time for me because we built a friendship. I’ve made friends with strangers in parking lots as well as in the drive-thru window who turned out to be invaluable. You never know when you’ll need someone or who you’ll need, so connect with everyone who pass through your life today, friends and strangers alike. It really is about who you know and how you know them.


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          “I Can Only Eat McDonald’s” :: McDonald’s Video Ad Submission

          Finally allowed to post this personal video I shot for McDonald’s , but only because they didn’t use it! How could they not?! “I can only eat McDonald’s” always shocks people, especially those who know I’m fatally allergic to literally everything. For some inexplicable reason, McDonald’s is the only food I can safely handle when I’m stabilized by tons of toxic immunosuppressant medication. Weird right? But it did mean I could leave the house and not starve as long as I had a McDonald’s near by. After being bedridden and left for dead, I finally was well enough to leave the house. Because of McDonald’s I was able to travel as far as New York and Chicago for business. The last time I was in Chicago I ate McDonald’s all 5 days.

          I have had McDonald’s almost every day for the last 4 years. Sometimes several times a day. Yes, it got gross after a while but the freedom and things I’ve been able to do are priceless. Most of you have eaten with me at least once at McDonald’s! Whether if it was to hang out, business meeting, or while I was traveling. So much has happened because McDonald’s is everywhere and safe for me, often even more tolerable than any food we make from scratch at home.

          The quality of life the last 4 years, doing things I never thought I could, and, most of all, getting to know and work with all of you was why I wanted to make this video.

          Thanks to Blake Cyrier for helping me film this with just a day’s notice!