Photographer Goes the Extra Mile to Surprise Chronically Ill Fan

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Photographer Benjamin Von Wong decided to seize the opportunity to make a chronically ill fan’s dream come true.

A while back, Tyler Grace, an aspiring photographer from Australia, posted the following message to Von Wong’s Facebook page:

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Earlier this year, Grace’s sister messaged the photographer asking if he would record a short “Happy Birthday” video to celebrate her brother’s 21st. Instead, Von Wong decided he’d rather go the extra mile and visit Grace for a weeklong adventure, according to his blog.

“At the time, I happened to be touring in Singapore and I thought to myself: When am I ever going to be this close to Australia again? Why just make a video when it was within my power to make an impossible dream come true?” Von Wong wrote.

Soon after, he was on his way to surprise Grace and give him a crash course in photography and adventure. During the visit, the two took a canoe trip, went to a rodeo, spoke at a conference to help raise money for the trip and partnered up for a few photo shoots. Von Wong even took the below picture of Grace and his sister.

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Lucky for us, Von Wong was able to convince a few friends to document their journey in the video below.

Grace suffers from a bevy of chronic illnesses. In the video he mentions fibromyalgia, rheumatoid arthritis, nerve damage, parts of marfan syndrome, sleep apnea and insomnia. Grace says that finding Von Wong’s work and taking up photography are what gave him a life worth living.

“Photography actually is what gets me through,” Grace says in the video. “Before that I was bed ridden for five years. I had no aspirations, no dreams. I was puttering around not really doing much.”

When recapping the trip on his blog, Von Wong said that making Grace’s dream come true was one of the most valuable things he could do with his work.

“I think it is projects like these that truly give meaning to what we do as creative’s,” he wrote. “What use is all the fame and popularity that is accumulated over a lifetime if it can’t be put to use and change the world for the better?”

All photos courtesy of VonWong.com.

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5 Ways You’re Not ‘Living’ With Chronic Illness

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A fine line, ladies and gentleman — it’s what stands between living with chronic illness and being alive with chronic illness. I’ve straddled it a few times, but I’ve figured out some of what’s on the other side and here’s what I know:

1. You’re not living with a chronic illness if you’re hunting for the “Why” full time.

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Is it because of a parasite? A bacteria? A cancer? Is it because you wore that blue dress last Tuesday? Is it because you stuck gum in someone else’s hair that one time in second grade? There are an infinite list of possibilities as to WHY you could be sick. But after a while and at least for a while, you’ve got to take a break from the endless hunt for answers and ask yourself, “How am I going to handle living with my disease today?”

There has to be breaks and balance within the search for answers. You can’t just live going from doctor to doctor. You have to even out the space in between with friends and work and family.

Because you can’t hunt, you can’t search, you can’t question and you can’t get an answer for any of the why’s in life until you’ve mastered feeding yourself, moving yourself, balancing your work, relationships and symptoms at the same time. I mean, you can throw all of those things out the window and just hunt while you lay in bed dying.

But we don’t call that living.

2. You are not living with chronic illness if you’re not working.

Meme that reads "Good things come to those who work their asses off and never give up."

Don’t panic. I’m not living under a rock, I know lots of people with chronic illness can’t work conventional jobs. So I don’t mean working in the 9-5 sense. I mean working in the “I have a goal” sense. Like, my goal is to get enough documentation to get disability. Or, my goal is to raise my kids as best I can despite my symptoms. Or my goal is to focus on my physical therapy so I can become more mobile each day. Or my goal is to find ways to work from home. Working is purpose. Do you have it?

3. You’re not living with chronic illness if you’re hating yourself.

Meme that reads "Don't compare your behind the scenes with someone else's highlight reel." - Steven Furtick

Sure, it’s super easy to slap a “defect” sticker on your chest and go cry in the corner. Hating yourself is about as natural as all the other symptoms of chronic illness — weight gain, constant pain, fatigue — but this is (maybe) one of the only symptoms you can wake up and shake off every day. Go to therapy. Learn to cope a little more every day. Making peace with your disease is something you have to do because…

4. You’re not living with chronic illness if you’re “fighting” it.

Sign that reads "Serenity is not the absence of conflict but the ability to cope with it."

Can we clarify something here for the general population? Fibromyalgia is not part of the WWF. Chronic illness is not cancer. You don’t “fight” it. You don’t “beat” it. You don’t make a voodoo doll out of it and start stabbing it with acupuncture needles. In the same way we don’t use the word “cure” to mean “treat’ we can’t use the word “fight” to mean “deal with.”

Chronic illness is:

  • coped with
  • managed
  • organized
  • contained
  • controlled
  • lived with
  • handled
  • confronted

Managing chronic illness means developing strategies to assist you in moving forward with your life’s greater focus with as minimal suffering as possible. Don’t head-butt your disease, outsmart it.

5. You’re not living with chronic illness if you are not moving

We all linger in stagnation for a while. We get stuck in the mud. Blindsided by an unexpected diagnosis. We let the moment we need to absorb, absorb us. Life with chronic illness is just like any other — a life full of obstacles. With pain, illness, exhaustion — it’s easy to sit down for a while and rest your body. It’s easy to lay down and not get back up. But if you’re not moving, you’re not living. So even when the obstacles become too great, the treatment stops working, the doctors stop telling you the good news, even when you lose support, you lose sight of what you’re moving towards — you keep moving.

Meme that reads "It does not matter how slowly you go as long as you do not stop." - Confucius

This post originally appeared on LetsFeelBetter.com.

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Emotional Documentary Follows the Ups and Downs of Multiple Sclerosis

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In 2006, Jason DaSilva fell down on a beach while vacationing with his family. The 25-year-old filmmaker was experiencing symptoms of the multiple sclerosis (MS) diagnosis he’d received months earlier. With his mother’s guidance, DaSilva decided to film his MS journey — this is how “When I Walk” came to be.

The documentary, which you can stream on PBS in the U.S., follows DaSilva as he tries to make sense of his debilitating disease. Helping him do so is his wife, Alice Cook, who DaSilva met at an MS support group (Cook’s mother has MS).

“I may be walking slower,” DaSilva says in the “When I Walk” trailer below, after meeting Cook. “But I’m racing.”

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A Life With Multiple Sclerosis Is Not a Death Sentence: 6 Myths About MS

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Multiple Sclerosis (MS) is a part of life for over 400,000 people in the United States, with an average of 200 new diagnoses each week. There is much about MS that we still don’t understand, such as the root cause of the disease, however, those that have been diagnosed with MS are finding new tools for coping and fighting the symptoms that MS can bring. There are many misconceptions about MS, and shedding light on these myths is one very big way to help bring awareness to MS and its effects.

1. Multiple Sclerosis is going to kill me.

A diagnosis of MS is not a diagnosis of a short life. Thankfully, research has shown that individuals with MS have, on average, a normal life span. There are instances where a severe case of MS may bring about complications or side effects that can impact one’s life span, however, the majority of MS sufferers will not have a shortened life span.

2. Multiple Sclerosis will make me paralyzed/disabled.

This is another myth. The majority of MS sufferers will not face paralysis. In fact, two thirds of individuals with MS will not suffer paralysis or a major disability. You may need to use a crutch, cane, or other walking aid, however, these aids are not due to paralysis or numbness, but can be due to fatigue or balance issues.

3. Only old people get MS.

While it’s scary to think about, the majority of new MS diagnoses are given to those between 20-50 years old. There are always exceptions to these figures, however, as those as young as 2 and as old as 75 may develop MS.

4. Those with MS can’t get pregnant.

This is one myth that is not only untrue, but holds a chance of relief for MS sufferers. Women with MS have the same fertility rates as non-MS sufferers. Additionally, many women report that during pregnancy, their MS symptoms completely disappeared. There is a 40-50 percent chance of relapse within the first six months after pregnancy.

5. I can’t have children because I can pass my MS down to them.

While genetic factors do play a role in developing MS, there is no evidence that a woman with MS will pass the disease down to her child. Statistics show that there is a 2 percent chance that a child will develop MS from an MS-diagnosed parent.

6. I won’t be able to stay active or work.

Thanks to the continuous efforts of modern medicine, there are many different treatment options for those with MS. Most of those diagnosed with MS will be able to continue their everyday activities. When it comes to exercise, many doctors believe that staying active can actually help the symptoms associated with MS. Not only does exercise help keep the body in shape, but it also helps fight off depression and anxiety, which many MS sufferers struggle with.

This post originally appeared on MS Living Symptom Free.

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The Blessing of Alzheimer’s

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“Now tell me, Micah, how is track season going for you this year?”

I smile at my Grandpa across the white, round table in his backyard and say, “I just told you about that, Grandpa. Do you remember?”

“Oh, that’s right! What’s going on with my mind these days? I guess there’s only so much room up here.” He taps his bald head three times with his forefinger, laughs, and I join him.

Then I tell him for the second time on this sun-drenched spring afternoon about running the hurdles, and how much I like it. He smiles when I tell him I’ve won a few races, frowns when I tell him I’ve lost a few as well, and when we finish, my Grandpa toasts me with his lemonade and tells me how proud he is of me, and that he loves me.

For the next 15 minutes we chat about my mom and dad, his wife (and my grandma) how he’s not swimming down at the YMCA anymore—but can’t remember why he stopped—and how green his back lawn is looking.

Then he leans forward, his eyes bright, and he takes my hand in his. “Tell me, Micah, how are you doing in track this year?” As he squeezes my hand tight, tears fill his blue-gray eyes. “I’ll bet anything you’re a star.” The tears spill onto his cheeks. “Yep, they’re lucky to have you, right? I’m so proud of you.”

I smile at him as wide as I know how, and begin to tell him again.

Alzheimer’s did a funny thing to my grandpa. I want to tell you about it, but first let me give you a little background so you’ll understand the significance of how he changed.

My grandpa grew up in West Seattle as an only child, had an extremely difficult childhood, joined the Navy at 19, and never returned home. But the scars of his early years went with him. He built a shell around himself to keep his heart from being hurt again. He learned how to block any emotions from getting in, and he learned how to keep them from getting out. And he learned how not to cry.

My grandpa was honorable to all, worked extremely hard to provide for my grandma, my dad and my aunt. But saying I love you was a challenge for him. He would say, “You’re the best in my book,” and, “You’re #1 in my mind,” and when I told him I loved him, he responded with pats on the shoulder and big smiles, but expressing what was really going on deep inside wasn’t as easy.

Then the Alzheimer’s came.

It progressed slowly at first, and we didn’t notice the profound change in Grandpa until Thanksgiving Day, a year and a half after he’d been diagnosed. After our traditional prayer, my grandpa didn’t let go of my hand on his right, or my dad’s hand on his left.

“You know something? I don’t know what I’d do without all of you. You’re so special to me. So, so special. All of you are such a gift from God, and you’re what I’m most thankful for today.”

Tears welled up in my grandpa’s eyes first, but the other nine of us around that table joined him within seconds. It was the first time I’d heard him speak with such tenderness and love.
After that, in the following months and years, the rest of the shell cracked, then sloughed off until there was nothing left but a tender, compassionate, funny, playful man. A man no one could keep from falling in love with.

And his inhibitions? Gone! He started going up to strangers and engaging them in conversation like they were long lost friends. Laughter constantly poured out of his mouth. He poked fun at himself, and teased others with the gentlest of words. Every holiday meal became a celebration of life and each other.

There was a freedom that grew in him that I believe most of us long for. He didn’t care what others thought. He didn’t worry about saying the wrong things at the wrong times. He was completely, utterly himself in every moment and it made it hard to keep a grin off my face when I was with him. And it made me want to be like him.

The transformation my grandpa went through has changed me forever. I don’t look at people the same way anymore. Now when I meet someone who is a bit gruff, or seems closed off, I don’t judge them. Because I can’t see what’s underneath the surface. I don’t know the pain they’ve been through that has caused them to build walls around their heart, so I look for the good, the joy, the brightness, and the tenderness that is floating deep inside them. Because I believe it’s in there. Sometimes I can see it. I think anyone can if they’ll take the time to find it.

I was also changed by how my grandma cared for him during the years my grandpa’s mind was slipping away. At dinner parties she was always there to fill in the blanks, to finish a story when my grandpa couldn’t. At the grocery store, when he couldn’t remember that he loved Hershey’s Chocolate syrup on his ice cream, she gently reminded him. She made his life as normal as was possible. My grandma seamlessly guided him from day to day as questions he knew the answer to on Monday vanished by the time Friday arrived.

When he woke up at 2 a.m. four nights in a row, not knowing where he was or who he was, she talked him through it, comforted him, and reassured him that it would be all right. And then in the morning, she would make his scrambled eggs with a touch of cheddar cheese, and English muffins, and strong coffee and tell him how much she loved him—even though he wouldn’t remember the comment two minutes later.

My grandma taught me that love is not a feeling but a commitment. They vowed on their wedding day to love each other in sickness and in health. Maybe she didn’t understand what she was promising—how could she at 21 years old? But she lived out her promise anyway. People said she should put him in a home. She never considered it. There’s no gold medal for doing what my grandma did. No parades or interviews on TV. But there should be because I’ll remember her example of selfless love long after the latest movie star or athlete fades from my mind.

I realize “The Blessing of Alzheimer’s” is a strange title for an essay. And please understand, it was devastating to watch my grandpa’s memories slowly slip away. It ripped at all of us to see my grandpa stolen from us by this insidious disease, and when he breathed his last, we all broke down.

But it was also an incredible gift to me and the rest of my family. It allowed us to see, and celebrate, and get to know the fascinating, wonderful, incredibly loving man who had been hidden for all those years. Alzheimer’s released him, and he burst out and danced with us, loved us with abandon and showed us a freedom I want to live from every day for the rest of my life.

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The Promise I Made to My Grandfather

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I sat patiently at the bench, waiting for my family to arrive. The smell of incense filled the room, overtaking dozens of flower bouquets that embellished every corner. My young cousin took hold of my hand, looking for me to say words of wisdom. I could only offer, “He wouldn’t want you to be sad, so stay strong.”

Let me tell you a story of a man. He was a refugee from the Vietnam War who toiled and struggled to deliver his 12 children to the land of the free. Years after finally reaching America, his eldest daughter gave birth to two children: my brother and me. Growing up with my grandfather, I was taught many lessons, though I did not understand at the time, and sadly, to my regret, I overlooked them.

My young years growing up in our small house seemed to pass by in a flash. I faintly remembered the kindness of my grandfather. He would often buy gifts for me from the dollar store and would feed the neighborhood strays who wandered into our home. Young and naïve, I believed he bought all these items because he was wealthy, not knowing he collected recyclables for the money.

My family arrived and I obediently followed my orders, but my eyes often strayed to what lay between the two flower columns.

Years passed by and I no longer lived with my grandparents. My mother faced health issues and my brother and I were taught to be more independent as my mother needed her rest. My Vietnamese fluency began deteriorating as I only spoke English for school. I gradually lost my ability to converse with my grandfather but he tried his hardest to strike conversations with me using simple Vietnamese terms. Because of his patience and kindness, we could still hold conversations.

After hours of praying, each person was to take a rose from a basket. I gently picked out a white rose.

Camping and traveling with my grandfather, I believed the good times would never end, but like the leaves which bloomed beautifully in the spring, eventually it would fall. I remember the chaotic day when my grandmother had a stroke. Thankfully she survived her ordeal but things were never the same. My grandfather, however, stayed strong and by her side through every step. I noticed he started forgetting simple things but I believed it to be an effect of old age; I didn’t know what he was suffering from, and like my other relatives, I focused on my grandmother’s health instead.

We formed a line, with me in front of my cousins. As I watched my relatives give my grandfather a rose, I felt a churning feeling in my heart. My grandmother passed by in tears with my mother comforting her.

As the year passed, my mother told me stories of my grandfather’s condition and even I could see the deterioration of his mind each time he visited our home. He seemed lost from touch with the present time and told us the same stories about his childhood over and over.

Gradually, his friends stopped visiting him. It was too hard for them to bear his condition. He would always tell the same stories, not knowing he already told them so many times before. Family became all he had.

I reached my grandfather, bowed with respect towards him and lightly offered him my rose. “I’ll always be your Chuot,” I whispered.

Along with my growing age, my grandfather’s condition escalated too. He was more childlike, questioning several things, forgetting the purpose of household items, having bathroom accidents, and forgetting to do simple tasks such as flushing the toilet. Worst of all, with each new visit, I watched him forget my relatives. I watched my cousins cry when he forgot them. I watched the sadness on my aunts’ faces when he asked who they were. I felt special for he still remembered me, his Chuot—his little mouse—a nickname I used to loathe in the past.

My time was approaching. My eldest uncle went up first, then my father, then my uncle-in-law, and so on. Tears were shed, tissues pulled from their boxes, and noses blown. I could hear my young cousins break down into heavy sobs as I held in my own tears. “He wouldn’t want to see me crying,” I repeated to myself.

He always tried to be helpful to his children, attempting to clean up around the house, but due to his memory loss, he often misplaced items. My family was patient at first, but with each item disappearing, it grew harder. One day, my uncle’s glasses were misplaced. My uncle’s patience crumpled as he asked my grandfather where he placed it. Though he forgot many things, my grandfather’s pride was intact. He believed his own family thought of him as a thief and he grew furious. He started to become more frustrated with his life as his condition consumed him.

My uncle motioned me to come to the front. I realized, too late, that I forgot my speech at home. I grew anxious as I made my way to the front, the clacking of my heels speeding my pulse. I was handed the microphone. With one look at my grandfather, I turned to my audience and delivered my feelings.

He finally forgot my face. I greeted him at the doorway of my home as I usually did, but this time was different. “Whose child are you?” I felt a pang in my heart but I still forced a smile and replied simply, “I am Chuot,” in hopes he would remember the nickname. To my happiness his face lit up with remembrance and he hugged me like usual but our relationship had changed. He only remembered the little girl who he bought Barbies for, not the current me.

I was complimented after the ceremony, but I didn’t feel content. My uncle-in-law walked up to me, and he, too, congratulated me, but afterwards he looked to my grandfather who lay in the distance, and said, “Your grandfather was a great man. If only more people knew about him.”

I was cleaning my closet one day when one of my stuffed animals fell on top of my head—my old friend Wolfie—a souvenir from my grandfather. My old memories of the Yellowstone trip came back. I remembered climbing to the top of Arch Canyon, only my grandfather and me since my parents were too tired to climb. Reaching the top, we viewed a breathtaking vision. The valley seemed to be painted with the colors of the sunset. I was sad to leave, but my grandfather promised we would come back in 10 years and climb it again. As I held Wolfie close, I looked at the calendar. Half a year left till our 10-year promise.

Later that week, however, I discovered our promise would never be kept. He was diagnosed with bone cancer.

That night, as my relatives dined and my cousins played together, I secluded myself in an empty room, staring at the moon outside the window. I closed my teary eyes, pictured my grandfather and promised him, “I’ll make you proud.”

My relatives traveled far to visit my grandfather in his final days. Though he had forgotten everyone, he was happy to have so much company, to always have someone holding his hand as he lay bedridden and to tell him that all those around him were his children and grandchildren. There was a time when all of us gathered around him and though he could barely create expressions, a smile peeked from his lips. I wish I could have said at that time, “Look, aren’t you proud? All of your children, all of your grandchildren, we’re successful. We have done what you have always taught us to do. We all are now medical staff, law professionals, college students, or honors students.” My grandfather had always valued education. His wish was for each of us to obtain it because to him, education opened people’s eyes and hearts.

I felt angry at the disease. Why did it take away his time? Thanks to him, we are all living happily in America. His wish had been fulfilled but he forgot us all. He wasn’t able to bathe in happiness knowing his wish had been achieved. The disease took that away.

No matter how much time passes, I will never forget my promise to him. Before I knew he had bone cancer, I made a phone call to him. At the end of the phone call I told him, “One day I will become a great doctor and help take care of you!” I may not be able to keep half of that promise now but I will strive to become a great doctor. I cannot take care of my grandfather anymore, but I will have the ability to help many others.

Let me tell you a story about a man.

Essay from the Alzheimer’s Foundation of America Teens for Alzheimer’s Awareness college scholarship competition, reprinted with permission of the Alzheimer’s Foundation of America (AFA). For more information about AFA and the Young Leaders of the AFA, visit www.alzfdn.org or www.youngleadersofafa.org.

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