Disconnect to really connect

By Monica Vest Wheeler

A recent media photo of a group of protesters made me chuckle as I looked at one of the leaders in the front row. She was staring at her cell phone while marching. And it wasn’t even a selfie pose.

I have no idea what she was even protesting, but I’m thinking, “You could put your damn phone down for a couple of blocks and show the world this is a top priority if you’re taking it to the streets.”

I saw a perfect metaphor for our society today: we are so distracted by our gadgets that we have trouble delivering our message to others and they’re having trouble receiving it.

We're not communicating very effectively these days, even though we're allegedly the most connected generation since Adam and Eve, who only had each other. And we wonder why there are so many misunderstandings, an overabundance of confusion, and a need to keep repeating the message.

Our brains are on overload from the relentless bombardment of information. What's happening to our brains is happening to our bodies, a stress level elevated by constantly being on call, never letting our guard down.

Give your precious brain a short break every day from the gadgets of your life, unless of course, you're dealing with an emergency situation. Even then, take it out of your hand or pocket or purse and set it aside for even 10 minutes.

Your gray matter and blood pressure will thank you.

Your loved ones and friends will thank you for putting the phone away and having a quality, engaged conversation.

Your brothers and sisters in a social cause will thank you for giving your full attention to the important message that you're trying to share with the world.

Sometimes you've got to disconnect to really connect. 

When words of thanks are not enough

By Monica Vest Wheeler

As the Thanksgiving holiday blankets our nation this week, the outpouring of words of gratitude and thanks are as abundant as the food and leftovers soon to be filling our bellies and fridges.

The traditional outpouring of generosity spills out through these final weeks of the year as the focus shines on the needs of the less fortunate, the hungry, the homeless, the jobless, the sick, the lonely. We are a blessed nation, yet one filled with great need.

The recent bitter and divisive election revealed our private and public pain, and it was not pretty. The still seething buckets of hatred and anger across this nation are excruciating to witness, and all it does is hurt more individuals.

The greatest lesson to be learned is that one person alone cannot solve the problems of such a diverse and challenged country. No matter who won, no matter your preference, there would be many who feel defeated.

As individuals, we cannot rely on any one president to erase our personal woes. We can't rely on any one elected official anywhere to make everything better. We have to step up and learn to take care of ourselves and rally with our neighbors to help those with the greatest needs.

In all the years I've worked with families affected by brain-related injuries, illnesses and diseases, the most powerful assistance doesn't come from Washington, D.C., or the state capital. It rises from within the community members who support each other and the organizations that meet the daily needs of families in crisis.

Don't look to D.C. for the answers. Look in the mirror. What have we given to the hungry, the homeless, the jobless, the sick, the lonely? Have we taught our children not to judge people by the color of their skin or religion? Do we speak up when we witness someone mock another person's physical or emotional challenge? Do we see the full spectrum of humanity, and how each of us is but one human being, with the endless potential to create a better world?

Abandon egos and embrace souls.

Reject intolerance and discover commonalities.

Turn a little empathy into a lot of action.

Unwrapping the emotions of the holidays

By Monica Vest Wheeler

Yes, ‘tis the season for THAT holiday spirit … which means something different to each of us human beings who recognize traditional and ceremonial dates as winter and a new calendar year blow our way. In the United States, Thanksgiving and Christmas are the most widely celebrated and “legal” holidays.

However, not everyone is enthused about the arrival of THE holidays, and there are more people dreading this time of year, many, many more than you think. If you feel that way, you're not alone.

It's not that most of us are not filled with genuine thoughts of thanksgiving, but the stress of putting on a “happy” face non-stop for six or seven weeks can be exhausting, emotionally and physically. So much is expected of us this time of year that it's easy to put ourselves on automatic just to survive. Automatic can be good at times, but not necessarily during the “most wonderful time of the year.”

I admit that I do struggle with the holidays and have for years. I remember tragedies and losses during these closing weeks of the calendar year, and the ink of those impressions have a sense of permanency simply because of when they happened. And I am not alone.

What I have discovered is that it's all perspective, and everyone has one, as unique as our DNA. While we cannot force someone to change that perspective, we have the power to influence those thoughts and observations in a positive, loving, supportive way. And it's not done in the noisy parade of the holidays, but the quiet corner of personal connections this and any time of the year.

It's all about listening and sharing. It's about helping unwrap the complicated emotions of the holiday experience one layer at a time. It's about exploring the deeper meaning of our human bonds.

It's about unwrapping and sharing yourself, the real you, perhaps the most precious gift of all.

If you'd like to read more about this topic, please consider checking out the following:

https://www.amazon.com/Ways-Surviving-Holidays-Love-Perfect-ebook/dp/B00R67LWXO/ref=sr_1_1?ie=UTF8&qid=1479731962&sr=8-1&keywords=12+ways+of+surviving+holidays

The healing power of photography

By Monica Vest Wheeler

I never imagined I could help treat my own pain with photography. Sometimes you don't see the full picture of life until you look through that tiny viewfinder and witness the miracles the everyday world misses.

I'm extremely blessed to have about 70 of my favorite and the most meaningful photographs I’ve shot in the last nine years, on display during November at the downtown gallery of the Peoria Public Library. It was VERY hard to narrow this selection down from the thousands and thousands of images I’ve accumulated.

I’ve had the privilege of attending more than 100 camps across the country that serve the unique needs of survivors of stroke and traumatic brain injuries (TBI). At my first Retreat & Refresh Stroke Camp™ in 2008 as a volunteer, I was addicted when I picked up my camera and saw amazing moments experienced by survivors and caregivers.

The love was compelling, the laughter was contagious, and the beauty of experiencing the simplest joys in life was beyond anything I had ever experienced.

With my own long-term struggles with depression, I realized that I needed camp. Then I discovered that camp needed ME as I received endless words of gratitude and hugs because I was giving campers memories of a lifetime via my photos.

By interacting with survivors and caregivers in the informal camp setting where they can be themselves for a weekend, I learned so much about the everyday challenges of those persons with brain injuries, no matter the cause. And one of the most common is short-term memory loss. My photos became their precious memories. I was humbled beyond words.

You would never think that I’m actually an introvert by looking at a collection of “selfies” in a big purple frame (my favorite color) in the exhibit, but I am very shy in many respects.

I had picked up my camera at that first Stroke Camp because I had trouble working up the courage to talk to campers and volunteers. I didn’t want to “bother” or interrupt them, but I could do something from behind my lens. I also felt I needed a “purpose” to be there and wanted to “earn my keep.” Depression can do that to you. Sigh …

Since that first camp in Central Illinois, I’ve traveled coast-to-coast and north to south, either in my own car or driving the Stroke Camp™ equipment van. I’ve added TBI camps sponsored by Texas and Louisiana Pilot Clubs, as I’m a member of the Pilot Club of Peoria service organization.

And then there’s the kids camp I discovered in the lush green of eastern Pennsylvania, Camp Cranium, created for kids who have survived various types of brain injuries, from internal and external causes. I spend that entire week photographing real kids having real fun … and make their parents cry at the conclusion of camp when I present a video of the photos.

But no one cries more than I do, and for all the right reasons. When I see their smiles and tears of joy, all because I captured moments that help them celebrate the true meaning of life, I’m truly alive.

It’s the best and most precious medicine in the world ….

You're invited to the exhibit … 

Many of these images on display during November at the downtown gallery of the Peoria Public Library, 107 NE Monroe, come from the 89 Stroke Camps I've attended across the country, in addition to the traumatic brain injury camps I connected with starting in 2012.

If you're in the Central Illinois area, please stop by to see me and the exhibit at a special reception at the gallery in downtown Peoria from 1-3 p.m. Saturday, November 19. You'll also find display cases filled with examples of assistive devices on loan from Retreat & Refresh Stroke Camp.

 

This exhibit and reception are made possible by the generous support of sponsors FIDELITY ON CALL and SPOON RIVER HOME HEALTH. 

Here are just a few samples of the many photos I've shot at camps in the last nine years that you can see at the display. 

 

Is tolerance on vacation in the U.S.A.?

By Monica Vest Wheeler

I used to love the media but not much these days. As a former weekly newspaper reporter and editor, I soaked up news like a freshly brewed iced tea in the middle of a deserted desert. I wrote a million headlines and stories, and edited many more millions inches of copy … or at least it seemed like it. And like Clark Kent, aka Superman, of the Daily Planet, I believed in truth, justice and the American way …

Though I'm certainly not living under a pile of rocks, I'm on a media diet these days because most headlines make me nauseous, especially during this, the longest presidential election season in history. My internal frustrated calendar has been tallying the endless days, weeks, months, years …

I never share my politics though proclaim that both political parties and the circus of candidates parading under each banner reek of negativity and are ignorant of the real needs of their constituents. The name-calling and threats and lies and accusations are off the wall this time around. Is this for real? How can this be happening? Yes, fact is stranger than fiction, and we continue to shake our heads in disbelief … but it continues.

We are truly evolving into a nation of angry citizens, bursting forth with tempers that flare before a match is even lit these days. This campaign is stoking flames of intolerance that I've never witnessed in my life. I can't believe the comments people submit on social media and in news forums and in public settings. Cruel messages filled with hatred aimed at individuals and ethnic, religious, cultural and socio-economic communities only perpetuate the wave of animosity.

I spoke at a local high school a few weeks ago on the topic of tolerance. I began my presentation with examples of the horrors of the Holocaust, explaining to these young people how the most horrific chapters of human history were written with intolerance, hatred, inhumanity and blood. I described the personal stories of Holocaust survivors that I had interviewed and their never-ending grief of losing loved ones to murderous attacks just because they were Jewish.

I shared with them what a middle school student told me a few years ago: "We learn it from our parents." Yep, they do.

With the deepest sincerity of my soul, I said that tolerance is respect … tolerance is kindness … tolerance is listening …

I lamented that we are witnessing the birth of a nation of bullies … from the tiniest playgrounds to the tallest podiums.

I poured my heart out about the social isolation experienced by many of the individuals I've met across this country who have experienced brain injuries, illnesses and diseases … how terribly, terribly lonely they are in a society that can be unsympathetic to "imperfection." I decried the rise in teen bullying and increasing suicide rate.

Yet, I offered hope that each of us, each of those young hearts, has the power to save this world … and we possess the same power to destroy it. Personal responsibility has never been more important, nor is the reminder that no one is better or worse than anyone else. Get over yourself. 

Finishing my passionate talk, I watched a few students wipe away tears. And I knew right then that I had to get out and deliver that same message to more schools and teens again and again and again … and create an even stronger one for adults.

We who believe in compassion, communication and connections have to keep talking … and talking … and talking … even when it seems like tolerance is on an extended vacation in the U.S.A. My suitcase is packed and ready to go anywhere to help bring it home …


Does your organization or school need a speaker to address the timely topic of tolerance? I have a powerful message to share! Contact me today at info@copeandsurvive.com or by visiting my website at www.teapress.net or by calling toll-free 877-267-4640. 

I'm camp crazy

I've definitely decided that I must be making up for not going to camp as a kid by being camp crazy as an alleged adult …

I remember not being interested in leaving my comfortable only-child bed when I was a kid to be around a bunch of noisy kids in a cabin or tent in the middle of somewhere. I admit that I was a loner in many ways by choice. I did sleep over at friends' houses occasionally or have them at my house, but going away to camp, nah, that wasn't me. I'd also get terribly homesick.

However, I did venture out into the world in late high school by attending a week-long writer's workshop at St. Joseph's College in northern Indiana. Met some other cool kids outside of Anderson, IN, and bonded with one in particular, a crazy girl named Lisa who lived in Ohio. We corresponded for years until we lost touch. Hmm, will have to look her up on Facebook …

And then I also had a whim to go into law enforcement and went to a camp sponsored by the Indiana State Police. I followed that by a week-long high school journalism workshop at nearby Ball State University. Geez, I was such a serious kid!

None of those took me into the woods and the places of the heart I venture these days. I'm not into fishing or climbing rock walls, but I love to take photos of individuals who cherish the moments of these special experiences, human beings who face the everyday and emotional challenges of coping with brain-related injuries, illnesses and diseases.

It's just me and my camera and the woods and a few mosquitoes with about 150 of my new friends at Camp Cranium for children with traumatic or acquired brain injuries this week in the inspiring setting of Camp Victory in Millville, Pennsylvania …

Dear Mom, and Dad and Diane,

This is my postcard from camp …

Love, your daughter,
Monica

Rewriting the script of brain injuries, illnesses and diseases

I've been absent from this blog for waaaaaay too long. I've posted a lot on Facebook and am now getting back into the habit of making sure I do the same on this blog, while digging deeper into my passion, Turning Empathy into Action.

An online discussion group topic on traumatic brain injury had me typing in the middle of the night …

This reaffirms what I learn from TBI survivors and caregivers as I'm focusing on creating upcoming books and related materials on coping with the emotional and everyday challenges of TBI. It affects not only the person with TBI but everyone around them. This is true with virtually all brain-related injuries, illnesses and diseases. I've learned this from my writing on Alzheimer's and being a caregiver for my father-in-law a few years ago, when he was diagnosed with Alzheimer's, which we learned after his passing was actually vascular dementia.

I've attended about 50 Retreat & Refresh Stroke Camps as a volunteer — where I am this weekend in Illinois. I've been attending some TBI camps in the last few years and will go to at least five this year, including a children's TBI camp this coming week in PA.

I've heard just about everything as I lead survivor or caregiver discussion groups at Stroke Camp and interact with survivors and caregivers in other ways around the country … from the hopes to the frustrations, from the lack of public understanding to the intense social isolation, from pure love to the joys of the simplest things in life. The same is true for those affected by TBI.

We often hear and speak about the "new normal" after a brain "event." Most people don't get that that "new normal" is constantly redefined as the brain reconstructs or adjusts itself every second. And there is a great deal of impatience and misunderstanding about fatigue, often viewed as laziness or a way to command sympathy. I've witnessed the intense pain and tears of so many survivors whose families belittle or ignore them or focus only on their INabilities or DISabilities.

Though medication alleviates many of the challenges I face with the depression I've lived with for many years, I understand that my brain gets tired more easily, and my body does, too. God bless my husband for understanding that there are days when I just need to sleep or "chill" or I'm not going to be MY best … which is the "best" for him and everyone I love …

Brain injuries, illnesses and diseases ARE a human tragedy, and each of us has a chance to rewrite that script for better understanding and compassion. Communication is the biggest key to promoting that connection … survivors and caregivers and families talking, listening, observing and learning from each other the challenges each face in coping with the changes. That connection is a powerful force in healing bodies, brains and relationships.

Nearly everybody fears what they cannot control or fully understand, and the human brain is the one of the scariest unknowns in the universe. Even "normal" people have bad days when their brains are simply tired or are trying to process too much. We are surprised when the person who always has a steady positive attitude snaps at us. Alas, each of us is human …

Thanks for setting my brain "on fire" enough to write this in the middle of the night …

"What I have stinks, but that’s what I have to deal with"

I discovered that the line of people, bundled against the chill of the February wind, was longer than I expected when I opened the church’s door. But I should have known better as the man remembered on Saturday had touched more lives than he could have ever imagined.

Greg Winn lost his battle against a brutal form of Alzheimer’s far too soon. He was just a month and a half shy of his 60^th birthday. Not even 60 years old. Everybody thinks Alzheimer’s is just an “old person’s” disease. It isn’t. Early onset Alzheimer’s robbed an incredibly vital man of an amazing life. Yes, 59 is young. It’s very young.

I met Greg in 2006 at the Alzheimer’s support group for newly diagnosed clients and immediate caregivers. This was that magical group of folks I’ve written about before, this amazing collection of individuals who let me into their private world so that I could educate more families and the public about the wrath and pain of Alzheimer’s.

At first, I didn’t understand why Greg was there. He was a kid to me. I thought at first he was the son of a parent with Alzheimer’s, but no, he was the one with Alzheimer’s, often accompanied by at least one of his devoted sisters, all in search of answers to “why?” and support. There were few answers to “why?” but there was an abundance of support.

Before the start of the October 2007 Memory Walk, which it was called at the time, Greg and I took advantage of the warm fall day to sit down and talk about what he was facing. I wrote in my book about Alzheimer’s:

“Greg is that stereotypical perfect picture of health and vitality. He exercises regularly, eats properly, is hard-working, intelligent, generous, a dad, brother to six siblings, in his early 50s and savoring life with great enthusiasm every day. He has everything he wants and something he doesn’t want … early-onset Alzheimer’s.

“Attired in running shorts and shoes, Greg prepares to lead the crowd at the annual fall Alzheimer’s Association Memory Walk. The gorgeous sky and hot sun make it more like summer than autumn, and that brings out hundreds of supporters who vow to walk for those who can’t and those who are here in spirit only. They all have a common goal: end Alzheimer’s disease.

“You’d never imagine that behind the stylish eyeglass frames and beneath the closely trimmed haircut is a man who’s battling early-onset Alzheimer’s with every source of energy he’s got.”

Greg told me that he had a good life working in Chicago as an accountant, never missing a day of work. Then he noticed some memory problems that were beginning to affect his work. His doctor referred him for an MRI, where the technician told him, “Take it one day at a time.” He laughs at that memory before his world flipped upside down with the diagnosis.

“One day at a time … That’s all I do. What I have stinks, but that’s what I have to deal with. I’m reconciled with it. This is my plight. This is what I have to do. I still get up every morning, still work and drive. That may be a problem at one point. I’m sure it will be. Other than that, I’m doing good, I‘m in great shape, I’ve got a great family. When the news came down, they were all around me. No ifs, ands or buts. They got me down here.”

That support system included four sisters and two brothers, who grew up in a tiny house where the girls shared one bedroom and the boys the attic. After the memory symptoms snowballed, he admits he couldn’t deal with it and moved back home to be close to family.

His siblings offered substantial emotional, physical and financial support as he copes with unexpected life changes, having to find work that didn’t tax his memory skills too much. It’s not the most exciting job in the world, but “I’m doing something.”

Despite everything, he says, “I couldn’t be in a better situation.” Is it hard for him to ask for help?

“I haven’t got to that point yet, but I probably will sometime. Nobody knows. It’s just the circle of life. It’s a tough thing not knowing what’s going to happen or how fast it’s going to go.”

A few months earlier, he had traveled to Washington, D.C., to offer testimony on the need for additional funding and to show the world that Alzheimer’s does not claim only the elderly. “Just get some money. That’s what we need. I feel like I’m contributing something. I feel like I’m helping some people …”

Greg was certainly not the voice or face one would expect to help kick-off the annual walk as the growing crowd listens …

“My name is Greg, and I was diagnosed a year and a half ago.” He pauses. “Hold on. I’m having a Greg moment here and need to stop for a moment.”

“It’s okay,” a female voice calls out. He smiles.

“I have to deal with this every day of my life. It’s tough, but I don’t dwell on it. I’m doing the best I can, and I’ve got a great family. They’re helping me tremendously, and I can’t thank them enough. I’m doing all right now, but I don’t know what the future holds …”

Several of Greg’s siblings cheered him on from the crowd, so proud of their brother who had refused to hide from the world and who had vowed to make a difference any way he could.

I can still hear and see that moment, which seems so long ago, yet was like yesterday. I was teary-eyed then and on Saturday, when I sat in the filled church for a celebration of Greg Winn’s life.

While absorbing the meaning of those two very different occasions, I reflected on my own life mission as I comprehended how well Greg had accomplished his. He put a real face on Alzheimer’s and it’s brutal toll and worked so hard to draw more attention to it. And I was so blessed to know him and help tell his story in my book.

I also realized that I had accepted a calling that would lead to more moments like this, falling in love with so many individuals who would lose their battle against Alzheimer’s. I have and will shed many tears and suffer heartache at loss, but I wouldn’t change what I want AND need to do. I’ve also lost stroke, cancer, traumatic brain injury and brain tumor-brain cancer survivors who had won special places in my heart as I’ve allowed their stories to become part of me.

My soul is constructed stronger because of each of these moments and individuals. I follow one of my firm beliefs: Tissues are cheap; human relationships are priceless. I just keep stuffing my pockets and my heart …

You won the race, Greg! 

The privilege was all mine, Jim Maloof

My fingers have been poised above my keyboard frequently in recent days as I try to describe the heartache after learning of the passing of former Peoria mayor Jim Maloof, a local institution and someone with whom I had a unique and special relationship since we met in 1985.

It seems like yesterday when I stood in line for more than an hour at St. Mary’s Cathedral to give Jim and his family my sympathy after his wife, Trudy, passed away in 2001. Jim got off his stool and walked with me to Trudy’s open casket. As he took my arm, he thanked me for being someone very special to Trudy, a compliment I had carried deep inside me for a decade.

Trudy was one of the most generous and kindest women I had ever known, but she stayed out of the media limelight. She let Jim soak up all the attention, which fit his outgoing and entertaining persona well. I had the privilege of being the only reporter she “allowed” into her private world to do a story on the occasion of the couple’s 50th wedding anniversary in 1991. I was gentle, yet persistent, in trying to win her over, and someone Trudy had come to trust in my role as managing editor of the weekly newspaper.

I remember that June day so well when she and Jim invited me into their home. Like the perfect hostess, she offered fresh lemonade and wanted to make sure I was comfortable. It took her a little while, but she warmed up to my questions as the three of us engaged in conversation, laughed and even wiped a few tears.

This was also an opportunity to see another side of Jim Maloof, whose boisterous public face softened when he talked about his blood family and the countless families he and Trudy had adopted in their never-ending crusade to defeat childhood cancer through the miracle of St. Jude Children’s Research Hospital. We talked for more than two hours, and I absorbed every word and emotion.

Jim and Trudy loved the article when it appeared a few weeks later. To me, it was more than a story, but a bridge to a deeper personal connection with the family. A few years later when I became a freelance writer, Jim and Trudy were being honored at a benefit, and I was asked to do the research and interviews. It was a huge undertaking but one I relished.

A while back, I ran into Jim, and he asked what I was doing. I said I was focusing on books that deal with brain-related injuries, illnesses and diseases because there was such a need for more understanding and help for individuals and families. We had a lengthy and emotional conversation. Hugging him as I left, I added a few more topics to my book “to do list.”

Jim, I haven’t forgotten our heartfelt talk. The education I’ve received in recent years working directly with families coping with Alzheimer’s, stroke and brain injuries has laid a firm foundation that has better prepared me for other tough topics, especially the one I pledged to you that I’d fulfill. I wasn’t ready when we talked, but I am now. And I know you’ll be right over my shoulder to growl, “Get ‘er done!”

I love you, Jim Maloof, and everything about you … from your trademark stubbornness to your habit of breaking into song … from your passion for cheerleading to your compassion for those who need the most help … from your warm embrace to your command to “Get outta here!” when the conversation was over.

While you’re singing and dancing in heaven, be sure and give Trudy my love. And Jim, please don’t interrupt while God is talking. Give Him a chance to get a word in, too!

Caregivers, you are NOT alone

Hey, caregivers, you are NOT alone!

I recently met a woman whose husband has been diagnosed with dementia. She said he would forget something after a few minutes.

I said, "Yes, that often happens."

"Really? Nobody told me."

She said he misplaces things all over the house.

I nodded. "Yes, that happens all the time."

"Really? I had no idea."

She said he often refuses to shower or change clothes.

I explained that they may think they've already just showered no matter how much you deny it. Plus, many folks with dementia or Alzheimer's often forgot personal hygiene, because that part of the brain that reminded them of daily habits is no longer functioning. It's often part of the disease.

"Really? I thought I was the only one dealing with this."

The woman looked at me and tears filled her eyes.

Gently rubbing her back, I reassured her that she was not alone, that millions of other families face this and MANY other challenges every day. She smiled, relieved to know she wasn't completely adrift on an isolated planet.

And I was reassured that my life's mission to educate families is NOT in jeopardy. No matter whether it's Alzheimer's, stroke, brain injury or other catastrophic injury, illness or disease, many families are still not getting the information from the medical community that they need to survive the everyday emotional and physical challenges.

So, my job is secure to keep passing along the news that caregivers are not alone in their worries, frustrations and seemingly endless questions. It's okay to vent, inquire and even challenge the rules. That saves more lives than you can ever imagine …