Mar

11

Posted by : admin | On : March 11, 2010


A couple of weeks ago I received an email from a concerned parent of a young girl who wears an eye patch. Recently she had been encountering people who made fun of her eye patch. In responding to her, I felt an urge to post the email here, hoping it would reach other children like her. Feel free to comment at the end. Thanks, iPatchMan.



Hi [Concerned Mother] and Group,

I am glad my name was in the subject line, so it got my attention. I am sorry to hear that your daughter is having some trouble with kids at school. I cannot imagine how it would have been back as a kid to go through all of this.

If I could sit down with your daughter I would tell her that I understand a little bit of what she’s going through right now. Having worn an eye patch for the last 4 ½ years myself, I know how much of an adjustment it is – for the person wearing it and the people who encounter it. That said, I believe wearing the eye patch has been a source of strength for me and I hope in telling you my story that your daughter may find some inspiration.

I tend to write long emails, so please bear with me.


I had my JPA at age 25, while a senior in college. You can read more about my story here: www.ipatchman.com. After a successful surgery, I was affected with nerve damage which caused paralysis in my right eye and facial muscles. As a result, I saw double and used an eye patch to cover my right eye. Nevertheless, it was hard for me to face my new reality as a pirate and deal with everyone else’s looks. The way I have dealt with wearing an iPatch (that is my way of writing it, makes it cool like an apple product) is by owning the look and owning the persona. I get the question all the time, why are you wearing an iPatch (I am happy when I get it, cause it is better than stares, and much better than no stares at all!). I have a whole arsenal of answers, everything from “I was abducted by pirates when I was young” to “remember when your mom told you not to run with a scissors in your hand? Well, DON’T run with a scissors in your hand!”. I cannot go around without little kids saying “mommy, mommy, look! It’s a PIRATE!” while their little faces glow (once I even got called a captain which brought me more honor then I deserved). And of course there were the fears of job searching and dating and just being accepted. Own your Ability is what I always say (disabilities mean nothing to me). I created a whole super hero in my mind, called iPatchMan (he even has his own Facebook account www.facebook.com/iPatchMan), and turned him into my sidekick. My first birthday party after surgery was an iPatch Party. Everyone had to come with an iPatch on, and there was an iPatch cake made that looked like an iPatch! I mixed this party with my first Annual iPatch Design contest where all who wanted to could submit an iPatch that they designed (I have since had a party like that and a design contest every year, more about that later). People had the best time seeing through my “eye” for two hours and experiencing what it’s like to wear an iPatch. I became THE iPatchMan on campus, and everyone knew me (it is really hard to forget someone with an iPatch). Turns out it was not bad for job hunting as recruiters always remember you from school networking events, and you leave an impression in interviews (I now work at one of the top consulting firms in NYC as a Healthcare Consultant to Fortune 500 firms). It worked out not bad in the dating scene and I met my wife Amanda in my last semester at Columbia and we got married this past August. At my last iPatch Party, Amanda got a ton of arts and crafts supplies from Michael’s and had an iPatch Design Table at the party itself. It brought everyone back to 2nd grade, and everyone loved it, making iPatches for the contest at the party. Since my surgery I have been dedicated to the cause and have been active at the Children’s Brain Tumor Foundation, mentoring young adult survivors and teens and heading their volunteer core (and for the past year serving on the board of directors of CBTF).

Most of the time when I am asked about my eye, I answer the truth, I say “I had brain surgery.” It seems to have just as powerful an effect. I always tell folk at CBTF that the kids who have gone through all this when they were young are the real superheroes. I admire them, as they learned to be strong at such a young age.

Recently I have been having trouble with my eye. Since I do not blink, my eye is very dry, and my cornea has begun to break apart. I aggressively lubricate my eye, but I can no longer sustain it that way. I have finally come to the conclusion (last week actually) that it is time to listen to the doctors and have a gold weight put in my lid. Since I was going to have surgery, I decided to talk again to a doctor who does the eye muscle surgery as well (been pushing that off for 4.5 years, since I have been perfectly content with my iPatch). Two things triggered my new interest in the eye muscle surgery. The first was a friend who had a JPA at age 25 that I had referred to my brain surgeon and who later on had the eye surgery successfully and was able to recover his bi-noculer vision. And second, I paid $16 to see Avatar in 3D and could not understand why I had to put on sunglasses to watch the Smurfs. Needless to say I cannot see 3D!

So I have decided to schedule my surgery to fix my eye lid and my eye muscle in one month from today. But that is not the end of the story. I have been having long discussions with Amanda about what this means for me, for iPatchMan and for everything I have created over the past 4.5 years. You see, I feel that in some ways, I have become iPatchMan! HE is the leading character in this TV show, and I cannot just go and kill him off. What about my website, blog, the news articles, the essays, dozens of iPatch designs, my iPatch Parties and Cakes, my T-Shirts, my iPatch business cards! And what about all those kids at CBTF who know me as the Volunteer with the iPatch, what about all those young adults I have told never to be ashamed of having brain surgery and to own their abilities? What about the people at work and the friends I have made over the past 4.5 years who know me no other way? What about me? Turns out I have100 more times the fear about taking off the patch then I had that first day I put it on!

In the end, I am still Akiva but will always be iPatchMan. It was not the iPatch that did all this but me. Yes, it was the tool I used to cope with having brain surgery and getting all my abilities. It was the way I chose to express myself and to feel like I am normal (how I decided It was normal to wear an iPtach is a question for my future therapist). But we all find our ways to cope and surround ourselves with the people who give us support and help us through it. I surrounded myself with a community who accepted me for who I was both despite and for the patch. And that was key to accepting who I was in the end.

The majority of kids will learn to accept your daughter for who she is and with or without her patch. And she can tell the jokes, or the real story to the ones that ask, but if they do not accept it then, I guess she might have to eventually tell them to “walk the plank.” But hopefully she never has too.

I hope this was helpful in some way, Please do not hesitate at all to contact me with any questions or comments. I would love to hear from you.

Yours truly,

iPatchMan

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Sep

27

Posted by : admin | On : September 27, 2007

The 1st Annual Marv Zablocki Memorial iPatch Design Contest took place on November 11th 2006. The contest took place at the Akiva’s Re-Birthday iPatch Party at Casa Zablocki.

These are the winners and runners up for the The 1st Annual iPatch Design Contest. thank you for all of you who participated. sorry it took so long to post the pictures.

http://columbia.facebook.com/album.php?aid=2056404&l=9dfe8&id=100183

You do not need to have a Facebook account to view the pictures, I am just using Facebook to store my photos.

The 1st Annual Marv Zablocki Memorial iPatch Design Contest took place on November 11th 2006. The contest took place at the Akiva’s Re-Birthday iPatch Party at Casa Zablocki.
These are the winners and runners up for the The 1st Annual iPatch Design Contest. thank you for all of you who participated. sorry it took so long to post the pictures.
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Jan

05

Posted by : admin | On : January 5, 2007


November 8th, 2006.

Reflections of a One Year Old Adult Reborn on November 8th

I don’t remember my day of birth. I don’t remember anything of my first year of life, but I can imagine what it was like: I must have come into this wretched world on a sunny afternoon in November 1979. I must have emerged, frightened and speechless, from my loving mother’s womb, to confront a cold hospital room full of strange people wearing masks. A foreshadow to the world that I would meet outside. My caring father and three older siblings must have sat quietly in the waiting room hoping everything went okay.

I must have spent my first few days in the hospital sleeping, dreaming about the life I was destined lead. I wonder if it was a pleasant dream or if I was scared of what I had seen there. Doctors must have come in and out of the room, checking on me every hour, reassuring my family that I was a healthy new born baby. Nurses must have spent their time diapering me, changing me, feeding me and singing lullabies.

It must have felt terrible—I, who was destined never to shut up, to not be able to communicate any coherent word. I must have felt horrible in that hospital jumper, in that crib, people walking back and forth in that window, not being able to shout out, tell them how I felt, give them my piece of mind. My devoted siblings must have come in and out to see their living, breathing, baby brother, and felt so proud to be there at my birth. My adoring family would have been so happy to take me home, to care for me, to play with me, to watch me pick up my first toys.

I can imagine how hard it was—I, who was destined to serve in the military, to climb mountains, to walk through the gates of Columbia University—trying to stand for the first time, while my family cheered me on from afar. I must have taken those first few difficult steps with such determination trying to reach the next chair. I must have made them all so proud, when I pushed aside my walker and started walking through the house. I can imagine learning to talk, to express, and to tell all how I felt.

I don’t remember my first birthday. They must have dressed me in a new jumper, sat me in front of a chocolate cake, lit a single candle and sung that maddening song. Ah me, it must have been the hardest year of my life.

I do remember my second birth; I remember everything about my first year of life. I came back into this beautiful world on a sunny Tuesday afternoon in November 2005. I emerged, frightened and speechless, from under the god-like Dr. Spetzler’s knife, to confront a cold hospital room full of strange people wearing masks. A foreshadow to the world that I knew existed outside. My caring parents and siblings, sat nerve-wrecked in the waiting room praying that everything went okay.

I spent my first few days in the hospital sleeping, dreaming about the life I had led and the life I would lead. They were not pleasant dreams, rather full of horrifying images, spirits and strange people. I met the Devil, Jesus, Fear, A long gray haired Native American woman in a glass box, a doctor in a clown suit, dead people, a kid made of straw wearing a green Robin Hood suit, Alice out of Wonderland, and souls that inhibited the room before me. Doctors came in and out of the room, checking on me every hour, reassuring my anxious family that I was indeed a healthy new born adult. Nurses spent their time diapering me, changing me, feeding me through a tube and talking to me—telling me about their lost dreams and aspirations.

It felt terrible—I, who never could shut up, not able to communicate a coherent word. It felt horrible in that hospital gown, in that dreadful bed, people walking back and forth in that window, not being able to shout out, tell them how I felt, give them my piece of mind; cry for help. My devoted siblings came in and out to see their living, breathing, young brother, and felt so proud that I was alive. My adoring family and friends were so glad to take me home, to care for me, to play with me, to watch me try, unsuccessfully, to pick up loose change from the table.

It was the hardest thing in my life—I, who had gone through basic training in the military, who had climbed to the top of Whatchu Pichu in Peru, who strode through the gates of Columbia University—trying to stand for the first time, while my family cheered me on. While taking those first few strenuous steps, I remember my determination to reach that hospital chair, to walk those few steps, to stand upright. I made my friends so proud when I threw aside my walker, my cane, my disability, and climbed Metzada. I remember learning how to talk, to express, to tell anyone and everyone how I felt.

I don’t remember my first birthday, but I will remember this first birthday. I will dress myself in new clothing, I will sit in front of an angel food cake my brother will bake for me, I will light a single candle and I will close my eye and wish. Ah me, it must have been the hardest year of my life.

And you, out their, strange people wearing masks floating through this cold world, standing in glass boxes, watching the world from inside. I want to cry out to you “awake! Emerge from your self-inflicted womb, and began your destiny-less journey of life.” In life you must take risks in order to continue to live your life to its fullest potential. Never give up on your dreams, and never be scared to chase them. Hope can triumph over Fear and Love can overcome Destiny. The journey is yours; you choose how to live it. I chose mine.

Akiva

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Jan

05

Posted by : admin | On : January 5, 2007



July 14th, 2006

Supplement #2 – the truth about where I have been since June by Akiva Zablocki

So this update email will be a bit different then the last two, but bear with me, it does go somewhere in the end. For the new comers to my brain tumor / brain surgery updates, I added the last two emails on this website, if you have never read them, read them first. Here we go.

I awoke from the sound of Yaniv’s phone alarm, got up, and walked to the window. There was a slight hot breeze outside, the kind you only get in the middle of the desert. It was dark out, and I was tired, I looked at my watch, three thirty in the morning, damm I was tired. I put on my clothes, brushed my teeth and headed towards the door. Yaniv mumbled something about waking him up in twenty minuets. I ignored him and went to wake up the rest.

It was time.

Roughly eight months ago I checked into the NYU Rusk Rehabilitation Center in New York. I had gone through complicated brain surgery out in Phoenix Arizona, on a so called “inoperable” brain tumor inside my brainstem. It was not an easy quest, but I had found myself perhaps the best surgeon the world had to offer. Well actually my older brother found him, or maybe the folk at Google, but that is a different story. The surgery had left me somewhat disabled, and I needed rehabilitation before I got back to my life. That morning I was not very happy. After flying all night from Arizona, fixed to a wheelchair, and being nursed by my friend Ari and brother Yitzi, I was tired, dizzy and grumpy. Without the ability to move on my own, I sat in the wheelchair as we waited in the hall of Rusk for nurses to clear my room. Someone had just died on the floor, and for a second there, all I could think of was, “I hope they change the sheets.”

But that was not my room, and they called me into another. My journey began.

We stood in front of the dark cold mountain where many had died trying to reach the top. For thousand of years this place has stood as a symbol of human endurance. And once again this endurance would be tested. No, I was not at the bottom of Mount Everest, but at the bottom of Metzada, the site of the ancient palaces built by King Herod in 37 BCE. It took the Romans almost two years to get to the top of the fortified mountain. I was going to attempt to climb it before sunrise. The long snake path rose up high and the end could not be seen. I gathered the group; made sure everyone had water and a hat and waited for the signal to move out. The group looked at me with eyes full of questions. “What will the climb be like? Will we make it up before dawn? Should I wear flip lops? Where did we leave our room key?” little they knew that I was as lost as they were. The year before hand I ran up Metzada in thirty five minutes. But that was before; I was not the same person now.

We moved out silently; it was time.

The physical therapist came an hour after I checked in, she introduced herself, and told me she would not be my regular PT. She started asking me questions and filling out a form. She asked all the usual questions, which I had been through over and over again for the past few weeks, and the answers were the same. But then she asked an unusual question that I had not been asked before. “What is your goal?” she asked. “My goal?” I asked, hmm no one had ever asked me that one before, I thought for a second or two; and naturally I just said the first thought that came to me. “I have to lead a Birthright trip this summer to Israel, and climb mount Metzada, so I guess that is my goal.” She giggled a bit, and wrote some things down, and then with a big forced smile she explained to me that they do not work on goals like that there. She told me that they will do their best to get me walking again, and functional to a satisfactory level for an adult to get along on oneself in the real world. “Whatever that means” I thought to myself; I said fine, “I will have to do the rest.”

And I did.

Half way up I stared to get a little dizzy, Ari was behind me so I was not worried, but a rest was needed. Luckily, a participant had an asthma attack so I stopped to help her through it; the needed rest was good for me. “Only a bit more to go” I told her, while repeating it to myself while catching my breath. I was lying, and she knew it, but I think I might have convinced myself. It started to get a little light outside, and I reminded myself I needed to be up before sunrise. We set out again, and paced ourselves faster. Almost on top and I could feel my heart beating, not only out of physical stress (which believe me, there was a lot of) but out of joy. I was going to make it. Last few steps and I can feel the breeze that you get only when approaching the last few yards of a long climb. I was at the top, and behind me the most amazing site I could imagine. Far as I could see, the Edom Mountains in Jordan stood there welcoming the sun that was to rise from behind them. Under the mountains, the lowest point on earth, the Dead Sea stretched out before me. The sun came up, and was the most amazing sun rise of my life.

I did it.

Three weeks later I am sitting in Tel Aviv while a near-war is going on in the northern part of Israel. It has been a good summer so far, and I hope it only gets better. Life as a pirate is not easy, people in Israel are rude and blunt. Everyone wants to know what happened to my eye, from bartender to security guard, they are not afraid to ask (so much for the American political correctness). With kids I am either confronted with cries of “emaleh” (the Israeli version of o’ mommy) while they run away with fear, or stares and questions about my life as a pirate. I feel good. Still cannot smile, but that just makes it easier to say arrrrr. Dr. Spetszler and Dr. Posner say time is in my favor, and things will still improve and come back, so I am hopeful. The meds I take for my arm pain mostly work, and my energy level is high. I hope to spend the next month seeing friends and studying for the GMAT before I return to New York.

Yes, as if I have not done enough this year. My next goal is business school. I am hoping to have my applications for MBA programs done by September (yeah right) and do the GMAT in mid September. Deadlines are October and on, and as usual I am aiming high. My first choices are Harvard and Columbia, with Stanford, NYU and more not far behind. I will take this chance to shout out to all of you, if anyone knows someone who is either, a student, and professor, an administrator, or a gardener at any of these institutions or any other business school, I would love to be in touch with them, so let me know.

I would like to thank everyone who has been with me during this long journey. Family and Friends are the most important thing in life, and without you (and you know who you are) I would be nothing. I cannot end without some inspirational notes, as a reminder to you all to enjoy life. So set high goals, really high ones, I mean like Herzl high. And do not worry about how long it takes you to achieve them. Herzl wrote once “At Basel I founded the Jewish State.” Talk about a high goal, but it happened in the end. Basically don’t let ideas and dreams stay in there currant format, work on them and make them a reality. Cause if you don’t, there may not be a whole nation of maniacs who will.

I hope all are well, wherever you are. Feel free to write anytime.

I hope to have these emails, pictures and more up on a website soon, so stay toned.

Akiva

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Jan

05

Posted by : admin | On : January 5, 2007


February 7th 2006 – Supplement:

Supplement – the truth about where I have been since June by Akiva Zablocki (Originally sent as an email)

A lot has changed since the last letter. The body is an amazing thing; if I thought 3 months ago that I will never be able to run upstairs again, or bend over without getting dizzy, nature and time has proven me wrong. My pulse is almost back to normal, I run up and down stairs, and even ran to the bus the other day. I still wear an iPatch but I have gotten used to the pirate look (like how I called it iPatch?), also, I went from being the guy everyone loves to forget to the one-eyed pirate everyone remembers. Two weeks ago my eye started to be able to be closed again, cannot blink yet, but it is coming back. This past weekend my cheek started to move, I feel I will be smiling in no time. I can feel hot and cold in my leg now, so I hope the arm and hand will follow soon. Still seeing double, but it just makes the world twice as beautiful (that is so corny). Overall I am feeling great!

Life has also been extremely busy since I have been back. I still go three days a week to NYU for therapies of all kinds (occupational, physical, speech, vestibular) but besides that I keep myself overly busy. I am taking two classes, one called Bearing Witness, a literature class about writings from and about the Holocaust. Yes the Holocaust; I am really happy I am finally reading about it, and the class is rally interesting. The other class is called Historical Foundations of Modern Economic Theory. That class is exactly as complicated as it sounds. But I like them both. I am back to being Senior Class President so that keep me busy.

And lastly I recently fulfilled a long life dream, and took part in a new start-up café opening up on campus. Café Nana, which I helped open, and I am one of the managers (Financial & Marketing director to be exact), is a new student-run Israeli style café on campus, you should all check it out if you are around. It is going great, but consuming most of my free time. Still I am doing it mostly to gain experience in running a business, in an entrepreneur setting. And to make sure the place is a success, because I truly believe in the concept. I am not being paid, but I am enjoying every second of it.

I still have a long way to go, and a lot more to heal, but I know it is going to all happen soon, so am not worried.

I had received a lot of responses to my email I had sent out. People were forwarding it to friends and colleagues and putting things into proportion. Others were so inspired that they are quitting their jobs and going on the road as clowns. All in all, I kept on getting people telling me how amazing it is that I sound so optimistic about all this. In response I say, “Is there any other way?” I mean this is the only response people ought to have to trouble. If good old Job could pull through, anyone can. People who are pessimistic usually like saying about themselves that they are only being realists. A realist, in my opinion, is not someone who needs to make up excuses for why things are going wrong; a realist does not escape reality and blames the situation on some external truth that things just suck. Being a pessimist is being a coward. Being a realist, is looking at the world, looking at yourself and where you stand, taking a deep breath, and smiling.

You are where you are because of the choices you made and the path you took in your life, and the journey is yours and no one else’s. A realist is one who knows that there is no other way than just to face your situation, deal with it, and travel the path you chose. No one is to blame for misfortune, not God, destiny, or karma. You are the only person you need to answer to, and no one is responsible. My belief is that one should always be happy with where they are, and work to improve whatever they can.

No, I do not believe my brain surgery has changed me. I think it only tweaked what I know all along. That you are only as strong as your personality and you have no one to answer to besides yourself.

Jean -Paul Sartre once wrote in Existentialism is a Humanism “So, in the bright realm of values, we have no excuse behind us, nor justification before us. We are alone, with no excuses.”

I hope all of you are well wherever you are, and I wish you nothing but good health and happiness. Don’t forget the sunscreen; they are not paying me from Coppertone Corporation for nothing.

Akiva

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Jan

05

Posted by : admin | On : January 5, 2007

December 6, 2005

the truth about where I have been since June by Akiva Zablocki (Originally sent as a email)

Hello,

So this is going to be a really surprising email,  and for that, I am sorry; what can I say, I am full of surprises. You might be somewhat aware of my situation, than this email might just be to clear some things up. Or you might not have heard from me in a while because I have actually been away for a month. This email might be a little long, but I will explain what has been going on in my life and about my “near death experience.” I will try to make it sort, since it is not easy for me to type, I might be blunt and to the point, but that is the way I am.

In June 2005, six months ago, while leading a Birthright Trip in Israel I started to see double. Right after the trip, I did some tests in Israel, including an MRI of my brain. I found out then that I had a brain tumor (shock). I immediately flew back to New York, to see the “best” doctors in the world, and to figure out what to do. Most of them agreed that it looked like a benign tumor, and that it should be slow growing. The problem was that it was inside my brainstem, the most important part of the brain as far as functions go. This meant that it could not be operated on. The doctors advised me, since my only symptom was double vision, to wait three months and repeat the MRI. Their hope was that it would not grow, and that I can live many years with it.

Over the summer, I continued to develop symptoms (left hand and foot went slightly numb and weakness in whole left side). I came back to New York and went back to school. Trying to make believe everything is normal. I did a great job in hiding my symptoms and hardly told anyone in school. By October my left chest went slightly numb as well, and my voice had changed. An October 11th MRI showed over 50% growth in the tumor. Immediate action was advised by the doctors. Again, since the location was not possible to get to, most doctors were advising radiation. This would be a 7 week process of every day radiation on my brain; basically like putting my brain in a microwave for 7 weeks to see what happens. There was no guaranty that it would work, and there was enough evidence to show that it did not work on my type of tumor (JPA). There were risks and complications and I might need surgery anyway afterworlds. I was not very happy about this option, and a day before treatment was due to start, I canceled.

Out in Arizona, Dr Spetzler was the only neurosurgeon (cowboy? superhero?) that was confident he can get the whole thing our safely and leave me with minimal damage. After great deliberation I decided to go ahead and do it. I flew down there, and on Nov 8th. 2005, I underwent brain surgery.

My Hero, Dr. Robert Sptzler


I woke up five days later, and heard from my family, that because of a complication I had been on breathing tubes and machines for four days, I did not look or feel too good, but I was alive, and the tumor was out. Recovering has been slow, I spent another week in the hospital in Arizona, being nursed back to like by an amazing nursing staff.

Surgery left me with a lot of neurological disorders. The whole left side of my body is senseless. The right side of my face is paralyzed (so I only have a half a smile, and I cannot close my right eye, so no winking), my right eye is also paralyzed (so I see double and cannot move it horizontally); I now look like a pirate and wear and iPatch. I lost half my hearing in my right ear as well as my balance. The surgeon said he did not think that he permanently damaged anything, so he is hopefully many of these disorders will get better with time. I am optimistic and believe they will as well.

I transferred to NYU hospital for rehabilitation; they said I would be there for six to eight weeks. I had to relearn how to walk, talk, dress, shower and bake brownies. It was an amazing experience, and a bit harder then basic training in the Israeli IDF. It took me two in a half weeks but being young and a fast learner they kicked me out of there today, I can walk on my own, but with a cane. And I am pretty functional. I will have a house aid (I think that is like a House Elf) come to stay with me during the day to help me with the basics, and for the next few months I will be going to NYU for more therapy as an out-patient.

All and all I feel good, and after a month it is good to be home. My journey has just begun, and my life has changed forever, but I welcome the change and the challenge and I’m happy to be alive and to get back to my life.

I will end with some cheesy advice – like they say in Trainspotting, “choose life,” I can’t emphasis this enough. Life is short, and you never know what is out there, so enjoy it now. Do whatever you want to do, and only what you want to do. And stop doing things you don’t like. And wear sunscreen.

I wish you all the best of health and a happy holiday month.

Best,

Akiva

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