Monica Vest Wheeler explores how we can lift ourselves and others by turning empathy into action … and the importance of the art of compassion and tolerance in dealing with Alzheimer's, stroke, brain injuries and other life challenges.
Friday, February 19, 2016
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.
Thursday, June 12, 2014
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
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
Sunday, June 8, 2014
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 …
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 …
Sunday, February 10, 2013
"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 60th
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!
Sunday, January 27, 2013
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!
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!
Sunday, January 13, 2013
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 …
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 …
Monday, January 7, 2013
Freedom and a lot of faith
I celebrate every January 7 as the anniversary of my "freedom," the day I was fired from my job as managing editor of a weekly newsletter.
It was a job that was literally killing me. I couldn't sleep or eat and was exhausted. The stress was wicked and threw me deeper into tunnels of depression. I wasn't a very good wife and mom during those final months of 1991, and my husband and son deserved far better than I was giving them.
I learned the hard way that NO job is worth endangering your health or peace of mind. But I was too afraid to step away on my own. My boss did it for me.
Sometimes we think we'll never recover from a traumatic event like that. However, sometimes it turns out to be the best thing that ever happened to us. I can vouch for that personally.
Occasionally we need a good kick in the seat of the pants to move forward in life. Life is all about moving forward and learning from the past. I needed a new direction, new purpose in life, but had no idea where to find it until I stopped long enough to "listen." I could do nothing else but "listen" to the voices and messages I had been ignoring a long time.
I've talked to many individuals, both survivors and caregivers, who have or are coping with brain-related injuries, illnesses and diseases. Many have shared that life took on a whole new meaning and purpose when the injury, illness or diagnosis happened. A job loss may not be life threatening, but the emotions can be the same no matter how our "planned" world is knocked off its axis.
Sometimes we are forced to stop, focus, plan and look deep within ourselves, and not just "deal" with everyday life. And when we do, we may hear music that we've never pay attention to before. We may feel the pulse of our own body when we tune out everything else.
The biggest lesson I've learned in the past 21 years is that we all need to create our own "freedom" from what is detracting us from really LIVING. It also takes a great deal of faith in ourselves and a higher power, whatever that is for you. The survivors and caregivers who have that duel faith are the ones that seem happier and more appreciative of the new life they're living, even if has numerous challenges.
Yeah, I know you've heard it a million times, but it's true: we are much stronger than we ever give ourselves credit. What new "freedom" are you going to seek on YOUR terms?
It was a job that was literally killing me. I couldn't sleep or eat and was exhausted. The stress was wicked and threw me deeper into tunnels of depression. I wasn't a very good wife and mom during those final months of 1991, and my husband and son deserved far better than I was giving them.
I learned the hard way that NO job is worth endangering your health or peace of mind. But I was too afraid to step away on my own. My boss did it for me.
Sometimes we think we'll never recover from a traumatic event like that. However, sometimes it turns out to be the best thing that ever happened to us. I can vouch for that personally.
Occasionally we need a good kick in the seat of the pants to move forward in life. Life is all about moving forward and learning from the past. I needed a new direction, new purpose in life, but had no idea where to find it until I stopped long enough to "listen." I could do nothing else but "listen" to the voices and messages I had been ignoring a long time.
I've talked to many individuals, both survivors and caregivers, who have or are coping with brain-related injuries, illnesses and diseases. Many have shared that life took on a whole new meaning and purpose when the injury, illness or diagnosis happened. A job loss may not be life threatening, but the emotions can be the same no matter how our "planned" world is knocked off its axis.
Sometimes we are forced to stop, focus, plan and look deep within ourselves, and not just "deal" with everyday life. And when we do, we may hear music that we've never pay attention to before. We may feel the pulse of our own body when we tune out everything else.
The biggest lesson I've learned in the past 21 years is that we all need to create our own "freedom" from what is detracting us from really LIVING. It also takes a great deal of faith in ourselves and a higher power, whatever that is for you. The survivors and caregivers who have that duel faith are the ones that seem happier and more appreciative of the new life they're living, even if has numerous challenges.
Yeah, I know you've heard it a million times, but it's true: we are much stronger than we ever give ourselves credit. What new "freedom" are you going to seek on YOUR terms?
Wednesday, January 2, 2013
A mission of turning empathy into action
I've had a number of people ask the origins of my business name, "Turning Empathy into Action."
About a half-dozen years ago, I was searching for something a little more interesting than the "Write Away" I'd had since starting my freelance writing business 21 years ago this month. I examined what I was doing at the time and the bigger question of "why?"
As a writer all my life, I realized that I was delving deeper into how people interact with other, especially during challenging or traumatic times. I was captivated by the emotions and words individuals share and don't express when those human connections are needed the most. I also found myself becoming more interested in educating the public on how they can better assist individuals and families in crisis situations.
Two words, "empathy" and "action," kept repeating like a scratched record in my brain, and what emerged was a clearer definition of my life mission: how to turn empathy into action. And voila! A title was born!
I turn empathy into action by interacting with individuals and families who have endured life-threatening and life-changing experiences, especially related to the brain. They teach me much about their everyday challenges, and I do my best to educate other families, the public, and even professionals on how they can better understand and meet the unique needs of those facing brain-related injuries, illnesses and diseases, many of which can take a devastating toll.
The brain became my focus because it's the least understood and the most important organ in the body. I'm not a medical professional: I'm an expert observer of human needs and interactions. Along the way, I've discovered that the emotional challenges and pain can often be as or more damaging and paralyzing than the physical outcomes. And it's often the most overlooked aspect.
I'm determined to turn that sad fact around. So, you can see that's a BIG life mission, and I embrace it more every day.
Go out and turn some of your empathy into powerful action. It's not hard to change a few lives. It's the best feeling in the world. I guarantee it!
About a half-dozen years ago, I was searching for something a little more interesting than the "Write Away" I'd had since starting my freelance writing business 21 years ago this month. I examined what I was doing at the time and the bigger question of "why?"
As a writer all my life, I realized that I was delving deeper into how people interact with other, especially during challenging or traumatic times. I was captivated by the emotions and words individuals share and don't express when those human connections are needed the most. I also found myself becoming more interested in educating the public on how they can better assist individuals and families in crisis situations.
Two words, "empathy" and "action," kept repeating like a scratched record in my brain, and what emerged was a clearer definition of my life mission: how to turn empathy into action. And voila! A title was born!
I turn empathy into action by interacting with individuals and families who have endured life-threatening and life-changing experiences, especially related to the brain. They teach me much about their everyday challenges, and I do my best to educate other families, the public, and even professionals on how they can better understand and meet the unique needs of those facing brain-related injuries, illnesses and diseases, many of which can take a devastating toll.
The brain became my focus because it's the least understood and the most important organ in the body. I'm not a medical professional: I'm an expert observer of human needs and interactions. Along the way, I've discovered that the emotional challenges and pain can often be as or more damaging and paralyzing than the physical outcomes. And it's often the most overlooked aspect.
I'm determined to turn that sad fact around. So, you can see that's a BIG life mission, and I embrace it more every day.
Go out and turn some of your empathy into powerful action. It's not hard to change a few lives. It's the best feeling in the world. I guarantee it!
Tuesday, January 1, 2013
Back on the blog trail again
I took a detour from this blog for the last year and a half. My internal GPS decided to go on a merry-go-round ride rather than hit the real road.
Well, I'm back and eager to blog again about the subjects closest to my heart, brain-related injuries, illnesses and diseases that take a huge emotional toll on individuals and families. My life focus wasn't distracted; just my mind and fingers were for a while.
I can't believe it's been a year and a half since my father-in-law, Pepaw, died from what we thought was Alzheimer's. We learned something different, that I'll explain more about later.
I've become more immersed in working with stroke survivors and caregivers at more than 40 Retreat & Refresh Stroke Camps www.strokecamp.org all over the United States.
I've now committed myself to learning more and educating the world about the unique challenges of traumatic brain injuries (TBI).
I've fallen in love with photography as much as I adore words. I'll be sharing some of the images that have not only captivated me but transformed me at the same time. I better understand that sometimes it's best to just observe with open eyes, ears and hearts to better comprehend and help heal the "human condition."
So, keep in touch. I'm glad to be back on the blog trail again …
Well, I'm back and eager to blog again about the subjects closest to my heart, brain-related injuries, illnesses and diseases that take a huge emotional toll on individuals and families. My life focus wasn't distracted; just my mind and fingers were for a while.
I can't believe it's been a year and a half since my father-in-law, Pepaw, died from what we thought was Alzheimer's. We learned something different, that I'll explain more about later.
I've become more immersed in working with stroke survivors and caregivers at more than 40 Retreat & Refresh Stroke Camps www.strokecamp.org all over the United States.
I've now committed myself to learning more and educating the world about the unique challenges of traumatic brain injuries (TBI).
I've fallen in love with photography as much as I adore words. I'll be sharing some of the images that have not only captivated me but transformed me at the same time. I better understand that sometimes it's best to just observe with open eyes, ears and hearts to better comprehend and help heal the "human condition."
So, keep in touch. I'm glad to be back on the blog trail again …
Tuesday, June 21, 2011
Alzheimer's and the Dance of the Seven Veils
It was a sentimental and necessary journey. I wanted to go back to the Alzheimer’s facility where my dad-in-law, Pepaw, had resided for nine months until he passed away in mid-May. I had learned so much more about Alzheimer’s and had fallen in love with the residents and staff, and I know it’s just where I need to be sometimes, like yesterday … to learn and live some more.
I joke with the staff that it’s weird not getting calls anymore announcing Pepaw’s latest escapades, “Guess what he’s doing now …” I walk the halls, talk to residents, and show them some of my toys like little colorful whirligigs, or pinwheels, and my purple tambourine. I never know when I’m going to need the latter, just in case I get crazy enough to lead a sing-a-long, a wild and wacky thing I’ve picked up from stroke camp.
I enter the activities room where eight women sit in silence after the conclusion of the afternoon game. They’re not sure what to do with themselves, and I’m not sure what to do with myself, so, hey, why not see what we can or cannot do together.
I pull out my tambourine and take the empty seat at the long table.
“So, what are we going to do now?” I ask.
“I was just thinking,” says the first, “why are we all sitting here?”
“What kind of songs do you all like?” I ask.
“Do what?”
“Songs. What kind of songs do you like to sing?”
Silence. Hmm, I didn’t phrase that right to get the response I needed. I needed to be much more specific. Suddenly, the second woman says there are song sheets in the drawer. I check, but nothing. The first asks if it’s snack time.
I try to redirect them. “What can we do, ladies?”
A third tries to tell us something, but she can’t find the words. I give her a few moments and then must keep the conversation going or I’ll lose them.
As I point to the tambourine, I ask, “Do any of you play musical instruments?”
Several say no, and the first asks, “Are we supposed to?” Confusion clouds her face.
“Oh, no, I just wondered.” This reassures her that she hasn’t forgotten anything. The relief is immediate.
“I played the accordion,” says the fourth.
For several minutes we are treated to an extraordinary story of her adventures playing with an all-accordion marching band in California when she was in high school. She describes how heavy that instrument was and the many practices she attended.
“How much do those things weigh?” the third asks.
“They weighed quite a bit, but I don’t know,” says the former marcher. “It was all I could carry.” She tells of how they marched on Hollywood Boulevard one day, and she tripped on something in the road.
A chorus of “oh no!” fills the room. She laughs as she describes herself as a frog on her belly floundering in the street on top of that accordion.
“Did it break the accordion?” I ask.
“It had to be repaired.”
“What kind of shape were you in?” the first inquires.
“I was stiff and sore and hurt muscles.”
“You had to carry that a long way, didn’t you?” the first asks.
“You had to have strong arms,” the player says, naming her band director from so many decades ago.
I tell them that I played saxophone in junior high and also marched, but my instrument was nowhere near the size and weight of hers.
The first looks at me and my tambourine.
“Play that thing.”
“What should we play?” I ask the group, four of whom haven’t said a word. I tap the drumhead as the metal rings clang against each other.
“I love those things,” says the first.
I offer it to number two, sitting to my right. “Give us a melody.”
“I’ve got no rhythm.”
“That’s okay.”
She taps it lightly, and then I can see that the first one across from us really wants to try it. We push it toward her. She immediately picks it up and shakes and hits it like an old pro and starts to move in her seat. We all laugh with her as she proclaims, “It’s the Dance of the Seven Veils,” and shakes her upper body more and picks up the beat.
The accordion player asks what the instrument is, and I explain it’s the tambourine. The first, the seven veils lady, looks at me from head to foot and says it’s purple just like my shirt and my shoes. Everyone peeks under the table to see my purple shoes, and the “oohs” and “aahs” begin.
Suddenly, number one starts beating the instrument and singing, “Roll Out the Barrel.” This clicks instantly with the accordion player who joins her. I jump in, and we sing the first two lines before we realize none of us could remember any more lyrics. It doesn’t matter as we smile, laugh and pass around the tambourine. The fifth woman explores every inch of it, particularly the metal jingles.
This continues until an aide announces that snacks are available in the dining room. We joke about whether we should have a congo line on the way! Maybe tomorrow!
Forget the stereotypes of “little old ladies” with Alzheimer’s sitting around and passively listening to Lawrence Welk. They really wanna dance and roll out the barrel … but only after their snacks!
Excuse me, but I have some lyrics to memorize before my next visit …
Roll out the barrel, we’ll have a barrel of fun
Roll out the barrel, we’ve got the blues on the run
Zing boom tararrel, ring out a song of good cheer
Now’s the time to roll the barrel, for the gang’s all here!
I joke with the staff that it’s weird not getting calls anymore announcing Pepaw’s latest escapades, “Guess what he’s doing now …” I walk the halls, talk to residents, and show them some of my toys like little colorful whirligigs, or pinwheels, and my purple tambourine. I never know when I’m going to need the latter, just in case I get crazy enough to lead a sing-a-long, a wild and wacky thing I’ve picked up from stroke camp.
I enter the activities room where eight women sit in silence after the conclusion of the afternoon game. They’re not sure what to do with themselves, and I’m not sure what to do with myself, so, hey, why not see what we can or cannot do together.
I pull out my tambourine and take the empty seat at the long table.
“So, what are we going to do now?” I ask.
“I was just thinking,” says the first, “why are we all sitting here?”
“What kind of songs do you all like?” I ask.
“Do what?”
“Songs. What kind of songs do you like to sing?”
Silence. Hmm, I didn’t phrase that right to get the response I needed. I needed to be much more specific. Suddenly, the second woman says there are song sheets in the drawer. I check, but nothing. The first asks if it’s snack time.
I try to redirect them. “What can we do, ladies?”
A third tries to tell us something, but she can’t find the words. I give her a few moments and then must keep the conversation going or I’ll lose them.
As I point to the tambourine, I ask, “Do any of you play musical instruments?”
Several say no, and the first asks, “Are we supposed to?” Confusion clouds her face.
“Oh, no, I just wondered.” This reassures her that she hasn’t forgotten anything. The relief is immediate.
“I played the accordion,” says the fourth.
For several minutes we are treated to an extraordinary story of her adventures playing with an all-accordion marching band in California when she was in high school. She describes how heavy that instrument was and the many practices she attended.
“How much do those things weigh?” the third asks.
“They weighed quite a bit, but I don’t know,” says the former marcher. “It was all I could carry.” She tells of how they marched on Hollywood Boulevard one day, and she tripped on something in the road.
A chorus of “oh no!” fills the room. She laughs as she describes herself as a frog on her belly floundering in the street on top of that accordion.
“Did it break the accordion?” I ask.
“It had to be repaired.”
“What kind of shape were you in?” the first inquires.
“I was stiff and sore and hurt muscles.”
“You had to carry that a long way, didn’t you?” the first asks.
“You had to have strong arms,” the player says, naming her band director from so many decades ago.
I tell them that I played saxophone in junior high and also marched, but my instrument was nowhere near the size and weight of hers.
The first looks at me and my tambourine.
“Play that thing.”
“What should we play?” I ask the group, four of whom haven’t said a word. I tap the drumhead as the metal rings clang against each other.
“I love those things,” says the first.
I offer it to number two, sitting to my right. “Give us a melody.”
“I’ve got no rhythm.”
“That’s okay.”
She taps it lightly, and then I can see that the first one across from us really wants to try it. We push it toward her. She immediately picks it up and shakes and hits it like an old pro and starts to move in her seat. We all laugh with her as she proclaims, “It’s the Dance of the Seven Veils,” and shakes her upper body more and picks up the beat.
The accordion player asks what the instrument is, and I explain it’s the tambourine. The first, the seven veils lady, looks at me from head to foot and says it’s purple just like my shirt and my shoes. Everyone peeks under the table to see my purple shoes, and the “oohs” and “aahs” begin.
Suddenly, number one starts beating the instrument and singing, “Roll Out the Barrel.” This clicks instantly with the accordion player who joins her. I jump in, and we sing the first two lines before we realize none of us could remember any more lyrics. It doesn’t matter as we smile, laugh and pass around the tambourine. The fifth woman explores every inch of it, particularly the metal jingles.
This continues until an aide announces that snacks are available in the dining room. We joke about whether we should have a congo line on the way! Maybe tomorrow!
Forget the stereotypes of “little old ladies” with Alzheimer’s sitting around and passively listening to Lawrence Welk. They really wanna dance and roll out the barrel … but only after their snacks!
Excuse me, but I have some lyrics to memorize before my next visit …
Roll out the barrel, we’ll have a barrel of fun
Roll out the barrel, we’ve got the blues on the run
Zing boom tararrel, ring out a song of good cheer
Now’s the time to roll the barrel, for the gang’s all here!
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