Friday, December 25, 2009

The gift of a Midwest winter's seagull

Noon Christmas Eve, Peoria, Illinois …

I had to go out and pick up sliced cheese for an evening gathering. I'd have to join the long lines of other absentminded, last-minute shoppers. Bah humbug …

The gray on gray sky dumped seemingly endless raindrops on our heads here. And we were thankful it wasn't the snow the folks north, west and east of us were enduring.

For Christmas this year, I sent my wonderful and deserving husband Roger to spend the holidays with his family in Florida. Hmm, I guess it's the first time in 34 years that he and I haven't been together on December 25. Just realized that.

On the wet drive to the grocery store, I thought about families I know who are going through their first major holiday this month after the loss of a loved one or other difficult circumstances …

The husband, father and grandpa who is spending his first Christmas in a care facility because that wicked Alzheimer's took too great a toll on his devoted spouse and caregiver.

The two kids and widow who are spending their first Christmas without their fun-loving dad and husband because of merciless brain tumors.

A woman marking Hanukkah for the first time without her mother, one of her best friends, a source of courage, strength, inspiration and a gentle sense of humor.

The mom and dad who accepted the heartfelt gifts of ornaments from friends to decorate a tree in memory of their son, to tell the joyous story of a young man who left this world far too soon.

The widow who tries to understand why her husband passed away very unexpectedly from a heart attack, yet rejoices that her son in the military is home safe on leave for the first Christmas in several years.

As I waited on endless traffic in pursuit of mozzarella and swiss, I also recalled the glorious firsts I had witnessed this year …

The stroke survivor who sang "Amazing Grace" at stroke camp this fall and left all of us weeping and applauding.

The stroke survivor who climbed the wall higher at stroke camp than he did last year and earned a rousing cheer from everyone in the gym.

The stroke survivor who is learning to talk again by singing.

The young man at brain injury camp who got to dance again for the first time since an auto accident that also killed his brother.

The family with a loved one who has Alzheimer's and is finally pulling together to face this challenge.

As I pulled into the parking lot in search of a space, I again felt the hugs from just a few days earlier of my mom, dad and step-mom as if I were back home in Indiana hearing their words of love, support and how proud they are of me.

Then I suddenly remembered it was my mom-in-law's last Christmas 10 years ago. I was sad for an instant until I remembered how she was the poster child for the holidays, full of laughter and love and how she accepted a gift of dishtowels as if it were diamonds. She had loved seagulls and passed away in Florida, where she had always longed to live. Many a time, a seagull has suddenly appeared in my life to reassure me she's fine and still with me.

As a wave of loneliness threatened to dampen my spirits, I whispered, "I sure do miss you."

And as if I had been instructed, I suddenly looked skyward through my windshield and the rhythmic flipping of the wiperblades. Here in the Midwest winter sky flew a seagull.

Miracles happened! I RELAXED in a packed parking lot on Christmas Eve! I DIDN'T MIND standing in line for sliced cheese! I HUMMED all the way home amid the idiots who can't drive!

However, most important, I was overwhelmed by a deep sense of gratitude for all the individuals and families who have shared with me their soaring successes and shattering sorrows this past year. Each has taught me incredible and priceless life lessons so that I can translate them into the words I share with new audiences and friends, people who seek only a little compassion to cope with the everyday challenges of Alzheimer's, strokes, brain injuries and a growing number of catastrophic life events.

Do they have any idea how much they have inspired and enlightened me? How they've comforted others who face similar challenges?

"Thank you, Janice," I told the seagull flying overhead. "Merry Christmas."

Smiling, I then wondered how I would explain to Roger how his mom was up here visiting me while he was in Florida with the rest of the family. Oh well, she had always vowed she'd take me in the settlement if he and I ever divorced …

Sunday, December 20, 2009

To Dax, who has decorated our hearts and souls

In our community, there's a little two-year-old boy, Dax, who is losing his battle with cancer, despite the best and untiring efforts of his parents Austin and Julie, St. Jude Children's Hospital, and a growing circle of caring individuals. However, he's won the hearts of thousands of families around the world who have responded to a simple request to "Decorate for Dax." People were encouraged to put up their holiday decorations early this year and send photos so that he could enjoy the beauty of Christmas … if his tired little body gives up before December 25.

You can drop them a note of support at or make a donation to St. Jude in Dax's honor. I felt compelled to send the following message to Dax and his incredible, loving parents … and to remind myself just how precious life is:

To Austin, Julie and Dax,

As I've followed your heartbreaking, though inspiring, journey, I'm reminded of Margaret Mead's quote: "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." I think that term "group" translates to "family," YOUR family. The three of you have changed many worlds, many lives in ways that are impossible to measure. You've reminded us of the real definition of love, compassion, courage and sacrifice. You've educated us in a classroom that is larger than life, touching a part of our souls that we didn't know could be stirred so deeply.

To Dax,

I think this well-known song was written just for you as you have inspired so many families to light up not only their homes, but their hearts:

This little light of mine
I’m gonna let it shine
Let it shine, let it shine, let it shine

Keep shining, Dax, and continue to give your mommy and daddy the light that will lift and comfort them forever. You and all your dear little St. Jude friends have redefined the word "angel." How so very blessed we all are to know you.

Tuesday, December 8, 2009

Stroke: Are survivors self-centered?

The first time I heard it in a stroke caregiver support group meeting, it surprised me. I leaned in closer to hear more and understand why it was a hot topic.

"All he cares about is himself."

Oh yes, it was hot enough to light a fire in this group.

While it may have seemed like an odd thing for a caregiver to say, most of her peers agreed without hesitation that their survivors have become self-centered, “Because it’s about me. I’m the one who had the stroke.”

Wow. Some tough food for thought to chew on. That statement speaks not just volumes, but libraries, about the changes a stroke can bring about.

Just remember that this isn't a blanket statement because every stroke, every person is different.

How about …

I don't think anyone will dispute this one: Survivors must focus on themselves to survive. They've got to muster every bit of energy, willpower, love and faith they have to simply live. We wouldn't expect any less of ourselves or a loved one.

And I don't think anyone will dispute this one either: Survivors may need assistance at times as they relearn certain skills, but some may also need to relearn the art of patience … or they risk burning out their caregiver or loved ones.

No wonder it's such a hot topic.

Saturday, December 5, 2009

Alzheimer's: An “ordinary” conversation

Overheard … an “ordinary” conversation between a husband with Alzheimer’s and his wife …

Wife: “Why are you so physically fit? Where do you drag me every single day, where I don’t want to go?”

Husband: “What do we do? In the morning. Where are we?” He laughs.

Wife: “Where are we at 5 o’clock? Where did we go?”

Husband: “Yes, we did. We went someplace. Oh yeah. We went to the …” While shaking his finger trying to remember, he grins.

Wife: “The gym.”

Husband: “Yes, we go to the gym almost every day.”

Wife: “We do every day. Not almost. I hate it with a passion though I know it’s good for me.” She vigorously shakes her head. “He’s gone for years. You start slow and you work until it gets kind of boring. What’s the first thing you do? Where do you go?”

Husband: “I go take off my shoes.” He laughs again.

Wife: “Not your shoes. Your coat. What piece of equipment do you go to first?”

Husband: “Okay, piece of equipment, that’s very, very easy. It is … I don’t know, what is it?”

Wife: “You walk. It’s called a treadmill.”

Husband: “Ah yes, treadmill. That is the first thing.”

Wife: “Then where do we go?”

Husband: “After that, we go hide.”

Wife: “You do that later. Where do you go after the treadmill? You sit down.”

Husband: “I do?”

Wife: “You pedal. What’s it called?”

Husband: “I don’t know.”

Wife: “You go on a bike.”

Husband: “Stationary bike.”

Wife: “Excellent! Then where do you go and hide?”

Husband: “I go and hide inside and work with you.”

She says he goes on the toning table and sometimes falls asleep.

Wife: “Then you join me and what do we do in that room?”

Husband: “Nothing much.”

Wife: “Geez, this is not a good day.”

Husband: “I think we do well doing what we do. I’m satisfied with it.”

Friday, December 4, 2009

Alzheimer's: Why we cannot judge others

While working on my book about coping with Alzheimer's, I interviewed a woman who quit visiting her mother in the nursing home because her presence agitated her mother. She chose not to visit in person but that didn't keep her from calling regularly to see how she was doing.

This is a poignant example why we cannot judge what another family does in caring for a loved one with Alzheimer's … unless it's obviously something inhumane or life-threatening. I remember one caregiver's statement that a neighbor quit speaking to her because she had made the difficult decision to place her husband in a nursing home. I used this example in my presentation to a group of caregivers and how the neighbor had no idea what this caregiver had sacrificed emotionally and physically to take care of him as long as she had.

Many, many caregivers go many, many nights without adequate sleep or help, leading to total exhaustion that is not only dangerous for the caregiver but for the loved one with Alzheimer's. And there are many, many caregivers who still visit their loved one daily after they make that difficult decision to place them in the care of an institution. It's never easy but sometimes becomes a case of survival.

No one knows what each family must do to cope with Alzheimer's. That's why we've got to listen and pay attention to caregivers … and make sure we're not ignoring or missing a cry for help.

Tuesday, December 1, 2009

Brain injuries: Best of intentions paved with pain

Her voice was soft, and I listened carefully. Her message was too important, and I didn't want to miss a word.

The woman was in an auto accident several years ago and sustained a brain injury that forced her to slow down. Her doctor told her she'd be walking again on her own within five or 10 years. She struggled with a walker and put all of her energy into learning how to walk but still had to rely on a wheelchair to get around most of the time.

Well-meaning friends thought she would be more "motivated" to walk if they took away her wheelchair and left her to move with only the walker.

She fell.

She fell again.

She fell again and again and again …

She thought her hip had broken on the last of eight falls. The doctors told her she didn't have one fracture: she had a half-dozen.

And modern technology finally revealed a spot on her brain stem from the accident that explained why she had not been able to walk. Add that to the destruction to her hip …

My heart simply broke as I fixated on her beautiful eyes.

I thanked her for sharing that difficult story. I told her it would help other people understand that what they consider "excuses"—depression, laziness, self-pity, or lack of motivation—that keep someone with a brain injury from making progress, can't be blamed. There are some injuries that can't repair themselves immediately or sometimes ever.

Yes, there are times and ways to challenge someone to improve … having them pick up something on a table to sharpen motor skills … letting the survivor keep trying to find the right word to make a request … but not removing a vital tool of their movement, something that keeps them as independent as they can be.

I asked if I could push her in her wheelchair out to where the bus with the lift waited to take her home. The sweetest smile and nod were a gentle and appreciative "yes." I told her I loved her "thumbs up" button she wore on her colorful holiday sweatshirt. She explained that it came from Disneyland where friends saw Mickey Mouse's familiar hand—the thumb and three fingers—giving this positive sign and immediately thought of her because that's who she is.

And the "thumbs up" she gave me in the chill of the night as I said good-bye was enough to warm my heart far beyond the distance I had to walk to my car.

I think I'll be carrying that around for a very long time.

'Tis the perfect season.

Tuesday, November 24, 2009

High school loyalty: that strange emotion that sustains you for the duration and then lingers all your life

Searching for my favorite red or green shirt to wear to the Anderson High School basketball game in Indiana on November 28, I stumbled across a box of old newspaper clippings. It included stories about the fire that destroyed the old school in 1999.

I sighed as I remembered the call about 4 p.m. that day …

“Monica,” my friend said, “our high school ...”

I can’t remember if she said, “is burning” or “is on fire.” The conclusion was the same: Our high school was gone.

While visiting my Indiana hometown just two days before, I had driven by the familiar structure several times. It stood empty, yet overflowed with memories. The proud Indian on the gymnasium made me hold my head up a little higher as it always had. That says a lot for high school loyalty, that strange emotion that sustains you for the duration and then lingers all your life.

I may live more than four hours away, but I’m still an Anderson High School Indian, proud of it even when that kind of mascot may be deemed politically incorrect nowadays.

Pardon me, but tough, please get over it.

We treated this symbol with great reverence and still do today.

Even the school song might be considered sexist today: “Let’s give a rah for AHS boys ....”

Pardon me, but tough, please get over it.

It’s an old song and that’s the way it was.

The world’s a different place than when I left in 1976, during the bicentennial of our nation and as part of Anderson High’s 100th graduating class. Talk about a year! We were overwhelmed with the patriotic red, white and blue, and the symbolic red and green school colors. The 25,000th graduate was a member of our class. It was an emotional time, personally and in the life of a building, of an institution. Though I had tired of 1776 bicentennial minutes that were part of the morning announcements, I loved reading our school’s history. That was something I could touch, something I relived in the trophy cases I passed every day, a new chapter of history I helped create during my years there.

I worked on the school newspaper in a cluttered, yet comfortable cubbyhole in the basement. Newspaper ink was injected into my veins early on and became my profession, thanks to the persistence of the tough, yet tender, Mr. Pursley. He taught me the value of truth and why that freedom must be preserved. I learned from the creative writing teacher, Mrs. Maine, the beauty of words and how they can change lives. She was right.

And it was to the literary magazine of my senior year that I turned the morning after the fire. It contained a red, flimsy record of the “Sounds and Scribbles of Anderson High School” that had been inserted into the 1976 issue. It had been quite an ambitious undertaking at the time, but has become one of my most precious high school memories, especially now.

It was then that the next stage of grief hit me, the tears, when I watched the red plastic spin the sounds of my life 23 years earlier. From being a lost newbie to watching the beautiful Indian mascot and maiden ceremony, all those powerful memories returned.

Along with the first day of my junior year when I met the lanky senior I would eventually marry.

Through my tears, I smiled. Holding hands on the way to class, being admonished by an administrator for kissing in the hallway. Hey, what did he know about young love! This was high school, man! It was more than books and learning, it was a place to have fun. It was more than bricks and mortar, it was a sense of belonging, a sense of community. I was grown-up. I was in high school. I was an AHS Indian.

I’m still an AHS Indian, as I will be the rest of my life. That high school pride is pretty powerful stuff. I was saddened by the closing of the school and then the fire. Both evoked precious and frivolous memories, the heart of who I was then and who I am today. That’s true for anyone, no matter what high school you attended.

Today, I’m still happily married to that senior boy, and we celebrated our 30th wedding anniversary this year. Our son followed in his mother’s footsteps by graduating in a memorable year, 2000, though from Peoria High School, which reminds me so much of Anderson.

No matter how the walls have tumbled, what the flames have tarnished, or what the bulldozer swept away, a part of my heart will always reside at the corner of Lincoln and 14th streets in Anderson, Indiana. Add my portion to the loyalty of thousands of graduates who shared the heartache I experienced, and the invisible shrine will endure far longer than the brick and plaster that succumbed.

Yes, high schools are buildings, but it’s the people who bring them to life. We don’t see empty halls. We see crowds of individual students. We feel the cold metal of the lockers. We hear the rushed conversations between classes. We smell lunch being prepared or cookies burning in home ec. We taste the uncooled water in the water fountain.

Yes, it was a very good time, and a very bad time. Few of us would care to relive those teen years, but that’s why high school memories are so selective and so precious. Like the song says, I’ll be true to my school. My school song overflows with a message that never changes in that sentimental and spirited tune we imbed in our memories. My heart will continue to sing ....

Let’s give a rah for AHS boys,
And show a spirit seldom seen;
Others may like gold or crimson,
But for us it’s red and green.
Let all your troubles be forgotten,
Let high school spirit rule;
We’ll join and give a royal effort
For the good of our old school.

It’s AHS boys, it’s AHS boys,
With colors red and green so dear;
Come on you old grads, join with us young lads,
It’s AHS now that we cheer, RAH! RAH!
Now is the time boys, to make a big noise,
No matter what the people say,
For there is naught to fear, the gang’s all here,
So hail to the AHS boys, hail! RAH! RAH!

Sunday, November 22, 2009

Alzheimer's: Just live in THEIR world!

Make it easier on yourself and everybody else and don't argue with someone who has Alzheimer's. If you do this or know someone who does this, stop it right now!

If they say the sky is green that day, then you know what? The sky is green!

A woman told me the other day how her mom keeps arguing with her grandma when grandma says she's waiting for HER mom and dad to pick her up. The mom keeps arguing that they've been dead for years!


Seize this opportunity to say, "How wonderful! What time will they be here? Where will you go today? How are they?"

You get my drift … right?

Use that as an opportunity to witness the childlike wonder and excitement in their eyes. Find out more about their parents and their childhood. The possibilities to relive that special moment are limitless!

Don't argue … enjoy!

Saturday, November 21, 2009

Alzheimer's: Tap dance memories

Friday morning …

As she descended the steps of the bus at the adult day care center, I studied the woman's thin frame and how she greeted my companion with a smile. As she was introduced to me, I held my hand out to take hers.

"Ooh, your hands are warm!"

Laughing, I wrapped my other one around hers and gently rubbed some of my warmth into hers. And hand-in-hand, we entered the building as I noticed she had some vision problems.

"It's getting cold," she said. "I don't handle the cold as well as I used to."

"Well, today's warmer than usual for this time of year. I brought you some sunshine from Peoria, Illinois."


My companion explained to me how this woman had been a tap dance and ballet instructor for 52 years.

"Fifty-eight years," the petite woman corrected with a smile.

"Oh my goodness!" I said. "I took tap dance when I was a kid."

"Why didn't you continue?"

I smiled and explained how my interests had changed.

I let her join her friends and the staff and volunteers as they indulged in some freshly made pancakes.

Smiling, I observed this mix of about eight attendees, several of whom have Alzheimer's or dementia. My new friend, the dancer, was among them.

A staff member told me how this woman was a fixture in the community with her dancing expertise and how she had led a couple of programs during her time at the center on dance techniques … and how she still had the swing in those hips.

And she also had macular degeneration and was losing her vision.

Fast forward to Friday afternoon …

As I led a presentation for caregivers about coping with Alzheimer's, I noticed the frequent tears of a female attendee. Though it broke my heart, I stayed on track and completed my talk. At the conclusion, this woman came up to me. Before she said anything, I asked, "Can I give you a hug? I could tell this was tough on you."

And she let me hug her thin frame.

She said she was trying to deal with the challenges of her mother's Alzheimer's. It wasn't easy at times as her mother was a strong woman who knew how to command attention, especially after being a dance instructor most of her life.

"Is your mom …" I asked, saying the name of the woman I had met that morning.

"Yes." She was surprised.

I laughed and described how her mother had questioned why I hadn't continued my tap dancing lessons.

Yes, that was her mom.

I'm reassured of my belief that there are no coincidences in the universe. A family facing memory loss had unknowingly given me a special memory … and transported me back to the echos of those silver metal taps on my shoes across the wooden stage … the colored ribbons that replaced shoe laces, my stiff hair-sprayed head, the body suit costume and my brightly red painted cheeks so that I glowed on stage …

Yes, they had tap danced their way into my heart …

Friday, November 20, 2009

Alzheimer's: The ones who are forgotten

After I spoke at an Alzheimer's workshop recently, an RN in an Alzheimer's care unit came up and thanked me for my presentation, especially the part about how there is still a human being inside the shell of those with this horrible disease. She said she is particularly drawn to those patients who haven't had a visitor in years or simply have no family anywhere. She takes them into her heart as family.

I found that very touching. These are the folks who are truly forgotten. And there are some families who leave their loved one at the nursing care facility and never look back. Why? Everyone has a reason.

In my presentation, I talked about the need to remember to interact with someone with Alzheimer's, even in the latest stages. Interaction can be as simple as a smile or wrapping your hand around theirs or brushing their hair. We humans were created to be engaged with each other in many ways even when we have no memories left to share.

That's another reason I so admire those who work in hospice or like the RN previously mentioned who takes a few extra moments to shine her own light upon the faces of those patients who have no one or have been forgotten, whether it's Alzheimer's or any other condition that takes an individual into their final days on this earth.

Let's remember not to forget.

Thursday, November 19, 2009

Alzheimer's and that mean old man

Meeting him for the first time on this particular day, you might think he was a "mean old man" if he scowled at you or called you a obscenity.

However, if you were introduced to him the day before or after, you'd likely be charmed by his infectious smile, wink, laugh or the funny faces he makes behind somebody's back. It could even be as little as an hour or five minutes earlier or later …

It's that damn Alzheimer's disease that creates those instant and heartbreaking transformations. It's that damn disease that steals the essence of the man he used to be, our husband, dad and grandpa.

It's Alzheimer's that shrinks his world and keeps him close to the comfort of familiar surroundings. Luckily, he's not one of the estimated 6 in 10 who are wanderers. He's content to sit for hours and observe the world that continues to swirl around him. Occasionally he'll shake his head at the odd or not-so-odd doings of others. He savors his glass of grape juice as if it's a fine wine.

It's just another day in the world of Alzheimer's … where he could be either the mean old man or the sweet old man …

We don't want either. We just want our husband, dad and grandpa back.

Wednesday, November 18, 2009

Alzheimer's: A kiss and candlelight

I attended the candlelight ceremony at the Alzheimer's Association office to remember those who had passed away from this horrible disease and to comfort those who still battle it. I took a candle, encircled by purple paper to protect my hand from dripping wax, and listened to the lyrics of a song about the pain created by Alzheimer's, the loss of companionship and all the things that make a loved one so special to us. I also focused on a poem read by a caregiver about missing the everyday joys.

As the staff lit our candles, I listened to the names of those who had passed away in the last year, some I knew, most I didn't, yet knew they left a unique circle of grieving family and friends behind. After staring into the glow of my candle for several moments, I gazed around the room. I observed …

The arm wrapped around a loved one in comfort.

The shaking shoulders of a man who wept silently over the loss of the love of his life.

The woman who sniffled and wiped her eyes as she remembered her late husband.

And the couple who sat in front of me.

The wife has Alzheimer's. From my seat, I could only see her face, but she looked into her husband's eyes with such intensity, and then their foreheads gently rested against each other, to give comfort, strength and love as his arm wrapped tightly around her. They lightly kissed and whispered something I did not, nor attempt to, hear because the love, fear and uncertainty in her face spoke far more volumes to me than any words.

I'll forever remember that kiss in the candlelight … an indelible reminder of how precious and powerful love can be. Sometimes it's the only prescription for this damn disease as we continue to pray for a cure and end to its cruelty … please God, open our human eyes, hands and minds to find the means to beat this NOW!

Wednesday, November 11, 2009

Stroke: I could have watched them dance all night

At first, I chuckled when I finally noticed after two years just how short Marylee was compared to her husband John. The evidence was clear as their arms wrapped around each other to slow dance as the chorus of performers serenaded couples with the sentimental favorite, "I Can't Help Falling in Love with You."

Then I simply smiled because, after a stroke, every dance is a celebration, no matter who leads or who follows, who stands or who sits, who laughs and who cries. It's such a beautiful scene to witness.

It takes a lot of love, commitment, sheer determination, compromise and a healthy dose of stubbornness for a couple to survive the challenges of a stroke. Sadly, not all marriages or relationships make it.

It's not easy, but Marylee and John have learned a lot and taught each other much more since John's stroke eight years ago, and continue to do so every day. So had the other couples here at Stroke Camp—that John and Marylee founded—couples that partnered well despite what may be the survivor's weakness or slowness or how they learn to sway to the music again. All that mattered was that two hearts were intertwined, that they could enjoy the beauty of a dance among new and old friends, a simple pleasure most of us take for granted, but a rare treasure for those fight their way back from a stroke.

Yes, I could have watched them dance all night all because I couldn't help falling in love with life again.

(Find out more about Retreat and Refresh Stroke Camp at

Friday, October 30, 2009

It's OK to cry at funeral homes

As I get older, it seems like I'm attending more visitations and funerals. One of the most noticeable changes has been the informality during the block of hours in which families accept friends of the family and/or deceased. Whereas I remember the quiet, solemn lines of folks dressed up with nary a whisper, the visitors are much more informal these days, conversing, smiling, even laughing and many times attired in comfortable everyday clothing, including jeans. Visitations and funerals have become family gatherings, almost like a reunion in the park without the baked beans and hot dogs.

After standing in a particularly long line this week for a dear friend beloved by many, I, too, was one of those engaged in conversation about the everyday stuff and embracing some friends I hadn't seen in a while. I actually welcomed the "distractions," because a part of my heart deeply mourned the loss of this friend. I had already shed several tears and hoped to make it through the line without succumbing to them again.

However, about six feet before my husband Roger and I reached the family to extend our condolences, the pain of loss again attacked my tear ducts and released the waterfall. As it was now our turn, I smiled and told the family with a smile that I was trying to regain my voice to console them on their loss. They smiled and shared the tissue box they kept close at hand.

At first, I felt kind of silly, because in the growing crowd, I didn't see anyone else shedding tears. But I suddenly didn't care as Roger and I reached the open casket, in which my dear friend was now finally at rest. My tears fell as steadily as Roger's hand that patted and rubbed my back in comfort.

The emotions that decorated my flushed face were evident as we exited past the growing crowd, but I didn't care. I decided to take my own advice that it's OK to cry when something far more important tugs deeply at your heart and soul, especially the loss of someone who had given my life so much love and inspiration.

It's OK to cry at funeral homes. The operators understand … and they also buy tissues in bulk for people like me.

Thank you, thank you.

Thursday, October 22, 2009

Alzheimer's and stroke: Two beginnings

The warm wind tossed the fading leaves, still rich with Mother Nature's brilliance, on the quiet road back to the spacious and sprawling one-story structure. The sun snoozed behind the clouds, yet emitted enough warmth to make this a beautiful and comfortable fall day, enough to make it memorable before cold winds intrude.

It was just a normal day at this building, called a nursing home by some, healthcare facility by others, simply home to yet others. Despite the usual daily routine, everyone had a tale to tell. However, I knew the "rest of the story" behind two of the stories on this day, both of which I choose to call "beginnings."

The first beginning featured the celebration of determined and slow, but steady, progress in recovery from a stroke. The woman had a massive stroke about a year and a half earlier. She's now engaged in trying to recapture her ability to speak and walk as her feisty attitude leads the way. Her face speaks volumes with smiles and eyes that roll when someone says something silly. She and her family are mastering the skills of transporting her in and out of the van under the careful eye of the physical therapist. Once she is inside, everyone is pleased, and as she goes for a ride, her grin replaces the lazy sun.

Every day will be a new beginning for this woman as she relearns the basics of everyday life to reach new definitions of independence. She and her family understand the reality of a stroke and how she'll be recovering and gaining a new experience every day of her life.

The second beginning featured the journey that another family had been dreading, the day in which their loved one, the patriarch, husband, dad and grandpa, could no longer be cared for at home and had to settle into these new surroundings. Alzheimer's had assaulted him and the entire family. That horrid disease had continued to destroy this man's brain to the point where he refused to cooperate in the simplest chores of everyday life, and the family's energy and efforts had finally succumbed to exhaustion.

Every day will be a new beginning for this man who has no memories of the love of and for his family and friends. His family understands the reality of Alzheimer's and how its cruel grip continues to rob him of something every day of his life.

The first family has started a new chapter in saying hello, while the second has begun the newest chapter of saying goodbye.

And the ink will continue to flow.

Thursday, October 15, 2009

The cruel voice of Alzheimer's

A caregiver shared with me this short, yet sad, description of a recent evening with her husband who has Alzheimer's:

"He asked for quiet last night - he was tired of my voice - so shut up. I did and turned the lights and TV off at 7."

Yep, persons with Alzheimer's may throw those kind of curves at you when you ask the simplest of questions, "Are you okay?" or say "That was interesting" or "Let's eat some dinner" or even "Hello."

Sometimes you speak to hear a human voice, satisfied even if it's only yours.

Often I get tired of hearing motivational speakers tell us that we completely control how we respond to outside stimuli, you know, what people say and do. Yes, we can filter out a lot of junk and should, but some slips in when we least expect.

We can rationally blame the disease, but it still hurts at a point far deeper than we can fathom. It's that darn result of being human.

So, if the person with Alzheimer's wants quiet, give it to 'em. You can accept it as a gift to allow your own mind to rest after a long day … Or you can close the door and go somewhere else in the house and do whatever you want.

It's okay no matter what YOU decide.

Wednesday, October 14, 2009

Cursing the mention of Alzheimer's

Could Dr. Alois Alzheimer have ever imagined how much we would curse the disease he identified a century ago, the very one that bears his name?

What a way to be written up in history books.

However, we should thank him for recognizing it as a disease of the brain, something that shouldn't warrant being thrown in an insane asylum, a prison cell or the corner looney bin, where many individuals many years ago ended up.

At the same time, we are totally confounded how the human brain can dissolve into chaos amid the deep caverns that keep brain cells from communicating with each other in the completion of everyday actions we take for granted … forgetting the need or urge to go to the bathroom and totally oblivious to the waste that can suddenly fill and overflow protective garments …unaware of the mechanics of and need for personal hygiene by showering or bathing, brushing teeth or rubbing both hands together to wash them … forgetting the lessons of how the tools of eating are handled or what role they even play …

And the list goes on that multiplies the heartbreak and sorrow of caregivers.

It's okay to curse Alzheimer's … and then pray a thousandfold longer for a cure.

Monday, October 12, 2009

Stroke and the magic of music

Life is but a song …

How true that 1800s bit of prose is when it comes to the magic of music in stirring something so deep and precious within stroke survivors. I've witnessed how the beating drums in the circle of survivors and caregivers at Retreat and Refresh Stroke Camp, born here in Peoria, IL, miraculously awakens the complex components of the brain to bring forth song from lips that have trouble speaking ordinary words.

I have learned so much from observing music therapist Susan Bock in action as she pulls the self-proclaimed musical and non-musical campers into a circle of sound that reminds us of the unique rhythm of life that literally keeps us alive as our heart seems to ease or quicken its pace, depending on the beat. Even if you adamantly claim you ain't got no rhythm at the start, you have by the time the final note echoes. Susan knows all the theory and correct terminology behind it. I just know what I like and see and hear in this particular circle of life.

I witnessed something even more amazing the other day when I observed Susan in action working one-on-one with a stroke survivor. The basic extent of this survivor's vocabulary has been "Yes yes yes" and "No no no" or shorter versions thereof. During a half-hour session, I listened to this survivor actually sing some of her favorite songs, proclaim that she was "going to eat, eat, eat a banana" or cucumber, eggplant, pepper, apple, orange and lemon as she shook the food-shaped shakers in rhythm.

Wow. I had those kind of goosebumps that give you bigger goosebumps when you fully comprehend what you're viewing. It was thrilling to hear her regain her voice that her family has longed to hear again and to see the smile they had missed during these months of recovery. She still has a long road to regaining the ability to talk and walk, but imagine how her own melody will gain in intensity and give her the motivation to bring her body back into harmony in the movement of life.

Now, she'll likely never be the way she was before the stroke. However, I have a feeling she'll blossom into someone even more special as she works to rebuild her world with the determination and faith stroke survivors must bring with them every morning. And that's why there are angels like Susan to pave that path with compassion and understanding.

In this case, the song is the key that opens the door to a new life after stroke.

Monday, October 5, 2009

A letter to insurance companies about the real cost of Alzheimer's

Dear insurance companies,

I have an important question for you: why will you pay much higher medical bills for a caregiver who is hospitalized because his/her health has been nearly destroyed by being a full-time caregiver, but you won't pay for the person with Alzheimer's to be admitted to a care facility unless they've been hospitalized for 72 hours?

The person with Alzheimer's is not totally incapacitated yet, according to official definitions, but this individual doesn't ask "What's for dinner?" They don't remember to eat without reminders and meals being set in front of them. And more frequently, they'll stare at the silverware and wonder what to do with it. And they forget what "going to the bathroom" is all about and don't even notice when they've "gone." Thank goodness for incontinence products.

They start to fall more often, which will cost you more than an arm or a leg if they end up in the hospital with a broken leg, hip, etc. They can't handle physical or occupational therapy to improve because their brains don't understand or remember the most basic of movements or what they were asked to do a minute before. And the caregiver can't pick up or move this person by themselves anymore because caregiving has wore them out or they're prone to injuries that will require hospitalization or therapy or rehab or whatever.

Cha-ching. Cha-ching. Cha-ching.

Now, what was my original question …

Oh yeah, I know it's not cheap, but what will it cost you in the long run? Knowing their loved one is under constant supervision and is safe buys families a lot of peace of mind, which keeps them healthier and able to maintain their own levels of independence for a much longer time.

Is this part of the health care debate? Who knows anymore with all the meaningless and angry rhetoric being tossed around in public debate. No, wait, it's not public debate; it's public hate.

Give that some thought and get back to me when you can. Oh, and please make it easy enough for sleep-deprived caregivers to comprehend.


Friday, October 2, 2009

Don't let Alzheimer's make decisions for you

I want to tell you a story …

The full-time caregiver of a person with Alzheimer's has to go to the emergency room because she's suffering so much back pain that she can barely move without screaming. She can't get to her physician's office during regular hours because her adult children, who have demanding lives of their own, have to work during the day and can't come by the old homestead to take care of Dad while Mom goes to the doctor.

Now, don't blame the kids for being heartless or lacking compassion, because Mom doesn't tell her kids about her back pain during the day. She doesn't want to worry them or take them away from their jobs because they're honest, hard-working folks who have mortgages and car payments like most of us. They've already taken several vacation days thus far this year to help give Mom a break in caring for Dad at home, because there are countless families out there that believe in caring for their own as long as possible. They don't want to rely on others.

Dad can't remember their names … rarely speaks anymore … looks puzzled at the seatbelt when he gets in the car … doesn't understand that everything in the grocery store isn't his to grab and eat or open to see what's inside … has no idea why there's a dog in the house (that's been there for 10 years or so) … forgets what a toilet is for … and has to wear Depends 24/7 because he has no clue what his body is releasing … You get the ugly picture that this family faces every hour, every day.

Love and many, many prayers to God keep them going.

Now, back to Mom's back. One of the kids comes by after work and discovers Mom in great pain and asks why she didn't call one of them sooner. Well, you know Mom; she didn't want to bother anybody; she's stubborn; she's trying to calculate how much the insurance will or won't cover; she's sure it's just stress and the extra physical and emotional exertion she's had to bear in caring for Dad's growing needs.

Well, while one kid stays home with Dad, the other takes Mom to the emergency room. She's admitted to the hospital because she's got some serious spinal problems, not just some muscle strain. This family has to make some quick and hard decisions. What will they do with Dad because Mom isn't coming home tomorrow …

I tell this true story as a reminder that EVERY family that has someone with Alzheimer's needs to plan for the worse, when the caregiver can't give care for a day or a week or a month or, heaven forbid, forever.

Don't let Alzheimer's make decisions for you. Start planning from the moment of diagnosis because tomorrow comes far too fast.

Thursday, September 24, 2009

Friends just disappear after a stroke

It doesn't matter if it's stroke, brain injury, cancer or another debilitating illness or accident, the survivors find a different circle of friends afterward, which can be bigger or smaller. And unfortunately, when it comes to something that happens to the brain, that circle can seem almost non-existent.

After listening to stroke survivors share their experiences with each other, I find that a singular theme has burned itself on my brain: if a person can't talk, or they can't speak the way they did before, or their words get jumbled, friends usually vanish. Period. It's sad but it's true.

Here's one male survivor's description of his best friend:

“I had a good friend for a long time. We always been best friends for a long time. I had my stroke. He never did call me after that. Just now that I’m able to talk better all the time that I can call him, and he’s able to talk with me now. It took that long. Otherwise he just disappeared. When I tried to call him, he doesn’t give much time. I’m still the same person in my head. It took a long time for me to talk to him finally. It’s a little different friendship. I still like to talk to him. Some of your friends might circle back around. Sometimes it takes a long time.”

Or a woman who has trouble at times articulating what she wants to say:

“I know this, I know things. But I can’t say it right. They say, ‘What?’ ”

It's an injury to the brain that causes these pauses or steals the words from their mouths. They're not stupid!!

If you truly want to help someone, stop looking at your watch and sit and talk with them. That is the most precious gift you can offer because you're giving them the workout of a lifetime. They can only improve with practice, with real conversation that truly puts their brain, heart and soul to work.

And that's another way to save money on health care! My letter to President Obama is getting longer every day …

Monday, September 21, 2009

Why I love stroke camp

I love stroke camp because it gives me a rush of emotions and fulfills a deep need to laugh and cry, to listen and ask questions, to hug and embrace a part of our beings that blossoms when we truly connect with others.

And when it's over, I have to let everything I've witnessed and absorbed soak in as I continue to marvel at the power of human interaction and how it can lift us higher than anything NASA can design.

What impresses me most of all is the depth of love that stroke survivors and caregivers possess. No, it's not easy. It's a new way of life that none of us would choose, but there was this incredible sense of appreciation of what the stroke has given them: this new circle of friends, whether it's other families experiencing the same challenges, or the volunteers and staff who give a unique part of themselves to make sure stroke camp is memorable.

I love stroke camp because it forces my brain to think and analyze and exercise the complex blending of witnessing triumph over tragedy, of clever substitutions generating more personal freedom, of applications of basic common sense.

Shame on those in our increasingly rude society who call stroke survivors "stupid" or "retards." Shame on those who make fun of them and knock them aside just to be nasty. Shame on those who ignore the fact that stroke survivors are still human beings and thrive on the most basic of interactions.

I salute the man who proclaims that "I am who I am," and I laugh with the woman who describes her stroke as a "brain fart." I admire the caregiver who still believes in love and that wedding vow pledge of a commitment through "sickness and health until death do us part."

I love stroke camp because the people are real. How utterly refreshing. How simply beautiful.

What a stroke of genius.

Wednesday, September 16, 2009

The art of recovery just by "doing" and not thinking

As I work on upcoming book on coping with strokes and another one on brain injuries, I keep coming across story after story of survivors who continue making fantastic strides in recovery just by "doing" and not thinking.

Now, what is that? It's simply that: movement in response to a game or activity automatically without thinking.

I've witnessed folks who've had strokes and brain injuries reach further while playing the Wii interactive games without realizing how much they were extending their arms or hands.

I've seen a corn shucking contest turn stroke survivors into active participants, exerting strength they didn't realize they had as they got caught up in the frenzy of competition with team members and cheers for their victory.

I just heard the story of a stroke survivor who wouldn't use his right arm that was affected by the stroke. However, he was given a little dog as a companion and he wants to hold it all the time in his "good" arm, his left, and now is doing amazing things with his right, simply because he doesn't want to let go of his buddy.

Here's to the art of recovery, just by "doing" and not thinking. And it's a heck of a lot cheaper!! Maybe I'd better write President Obama and let him know this action alone could reduce the country's health care bill in half!!

Dear President Obama …

Tuesday, September 15, 2009

Caregiving: the loneliest occupation

A huge source of our strength and enjoyment of life is found in those people we love being around. As we go through life, our circle of friends evolves and grows with us. Friends give us comfort and share laughter and words of wisdom and absorb our tears. We need the interaction with each other to survive.

Today, more than ever, we have a group of individuals that is losing its social circles with each passing day, just at the time they need friends and family the most. Caregiving of a loved one is rapidly becoming the loneliest occupation in the world.

I spoke to a caregiver the other day, one who never realized just how isolating caring for her husband with Alzheimer's could be. She described how she broke down in her physician's office, tears of intense sadness, lamenting the loss of the everyday contacts that have helped preserve her "sanity" during the increasing challenge of caregiving. Without that vital outlet to bond with fellow human beings, she has lost a great deal of herself. Without the emotional connections, she has also felt the painful crumbling of her physical health.

If you don't buy the truth that our emotional and physical sides are intertwined, then talk to a caregiver of someone with Alzheimer's or another debilitating disease or injury. They will describe the painful loneliness that threatens to dismantle their hearts in every way. That's why we must be ever vigilant in caring for caregivers or else we risk losing them well ahead of the person with the disease or injury.

Think of the caregivers you know, the individuals you love. A small sacrifice of your time and energy can give the conversation about ordinary things they crave, the hand that wraps around theirs, the human connection they so desperately need.

Imagine if it were you in their place. What would or could you give?

Sunday, September 13, 2009

There's someone in there

I visited a local health care facility to meet with a gentleman I've been working with on a book project. As I prepared to go down one hallway, I stopped because I heard his voice. I'd know it anywhere, and I recognized immediately that he was reading aloud.

I turned to follow the path to his voice in the quiet hallway, where his words were the only sound. There he sat reading from a collection of short stories to a woman in a wheelchair. As he continued, I approached quietly, not wanting to interrupt him. I didn't want to disrupt this "conversation" they were having, though the woman sat motionless.

As I studied the woman, her eyes moved from him to me. As he turned the page, he looked up. He smiled and greeted me. I knew the identity of this woman, his wife, who had a stroke about two years ago. As he introduced me to her, I stepped to her side and gently took her left hand. She squeezed it as I made eye contact again. I watched the tiniest movements of her mouth, which did not open, but revealed the effort she was making to create the seedlings of a smile.

Our eyes did not stray as I encouraged her husband to continue reading. She gave the smallest nods when I said it was nice to meet her and called her by name.

I knew that there was someone "in there," a vibrant, energetic woman betrayed by her body. I knew there was someone in there who understood how simple eye contact and the human touch are so precious in the lonely quiet of her world. I moved my fingers slightly to see if she would still respond, and she did.

And then her lips seemed to buzz together, releasing a puff of air as if she wanted to say something. This went on for several minutes. I wasn't sure what she was trying to convey, but it was okay to nod, to acknowledge her effort, to accept the frequent squeezes of her steady hand.

I almost hated to leave but told her to take care and that it was very nice meeting her, and it was, though she said not a word … only communicated with her eyes, an affirmative blink, and her strong fingers, a firm grip on mine, on me.

Yes, there is someone very special "in there" who taught me much in five minutes.

Who led your classroom on life yesterday? Who are you teaching today?

Friday, September 11, 2009

An angry nation after 8 years

We are a mighty angry nation these days, aren't we? I guess the unity and focus on social good has worn thin eight years after 9-11. Did it get boring?

We now have a congressman yelling "You lie!" in the middle of the president's speech and a larger pack booing in those hallowed chambers of the Capitol. We have parents freaking out because the president wants to tell their kids to study hard and get an education.

George Washington, Abe Lincoln, other distinguished leaders, the victims of 9-11, and the hundreds of thousands of Americans who have died defending this country for more than 230 years have to be rolling in their graves.

Let's see, what does history tell us … Ah, yes, a society that loses respect for authority, puts money before conscience, and tosses civility to the wind is doomed.

Since nobody's paying attention, I guess class is dismissed.

Pardon me while I continue to seek for and savor the compassion that speaks softly and concentrates on what's important in life, you know, the folks who can't be heard over the rude, intolerant shouts.

Please, have a beautiful day and celebrate life and remember the true price of freedom despite what the naysayers scream in your ear.

And forget the damn games and quizzes on Facebook and give a friend, a neighbor, a caregiver a break, a hug, a smile, this week. That's a score that can never be beaten.

Hmm, maybe that's why we've become a bitter nation. We spend so much time watching "reality" shows and playing computer games that we're shocked to see what has happened in the "real" world while we haven't paid attention …

Saturday, September 5, 2009

A rude nation: Shameful acts of protest

It's been almost embarrassing to witness some of the town hall meetings concerning the healthcare reform issue. Now, granted, the government's dissemination of information and the behavior of some elected officials has been less than stellar, and the growing list of fiction in the media and on the Internet about the whole affair has been mind-boggling, but I'm stunned more by how rude a growing number of citizens are becoming.

There have been troubling instances of audience members shouting down, booing or interrupting someone trying to speak. The most horrendous I watched was a woman in a wheelchair who had been called upon to speak but could barely be heard after a while as protesters did their best to drown her out. She spoke of her concerns about being able to afford medicine and even keep her home. She kept speaking and clutching the hand of someone beside her.

One of the most annoying protesters was asked later why he kept interrupting her, and he asked if a woman in a wheelchair has more rights than he does.

What an arrogant jerk. Wait until you're in that wheelchair, buddy. Maybe we'll have removed some of those handicapped parking spots and any other "perks."

If we don't temper our protests with compassion, we will continue this dangerous slide into a nation of chaos, a society of forgetfulness, not forgiveness.

Monday, August 31, 2009

Lost in the chaos of Alzheimer's

While talking with a caregiver the other day, I was touched by how she lamented the loss of order in her home as she cares for her husband who has Alzheimer's. She said she hasn't seen the top of her dining room table for eons. I told her that it was okay because I hadn't seen the top of my desk forever.

She smiled. She understood the humor I tried to inject into the conversation. She appreciated the momentary diversion and knew I wasn't making fun of her housekeeping skills or making light of something that obviously concerned her.

I quickly grasped the frustration of disorder in her life, a life in which she had been able to control much of her environment, keeping people and pets in line for decades until recently.

It wasn't just clutter; it was chaos.

"That isn't me," she said with a sigh.

Alzheimer's not steals only our loved ones' memories and lives, it works tirelessly to destroy other corners of our world … our skills, our simple, yet important, accomplishments that maintain our dignity and our homes and our lives.

Think of any caregiver you know, no matter what health challenges confront their loved ones. Offer to sit with or entertain their loved one. They may appreciate that simple break to clear off the dining room table at their own pace … to sort and shred to their heart's content … to regain their little corner of order in a chaotic world.

It's a priceless and well-deserved victory.

Tuesday, August 25, 2009

Alzheimer's: Breaking sacred promises

Sometimes it takes a while for everything to soak in, for you to fully comprehend a world that makes no sense, a world that consumes you within the sacred walls of your own home.

When it comes to Alzheimer's, no two individuals with this damn disease are alike. No two caregivers are alike. However, they all share one trait: they're human.

Many caregivers feel enormous guilt when they physically can't keep up with the demands of 24/7 care. But there comes a moment when our very human instinct to survive kicks in, when it commands more attention than guilt, even for only an instant.

And sometimes we must break sacred promises we made to the new stranger who now lives with us, someone who has resided in our home for many years, someone who has shared our kitchen table or even our bed. We remember the day they told us, "Don't you EVER send me there," and we vowed they'd NEVER have to go to adult day care or an assisted living facility or a nursing home.

We will cry while we make that decision and all the way home after we entrust someone else to care for our loved one, whether it's for eight or 24 hours. We will cry in the middle of the night and the day, over-analyzing everything we have done or think we should have done, allowing our exhausted imaginations to come up with new avenues of guilt.

Leave those regrets behind when you make those tough decisions. You will have done the best thing for your loved one and yourself when you ask for and/or accept help. You will have given them the attention and care they need when you are too exhausted to watch their every move. You will have given them more love and focus when you see them and care for them.

You will have saved yourself and become a much better caregiver in more ways than you can calculate because you can begin to rebuild your body and your mind and your spirit.

And isn't that the person your loved one with Alzheimer's will always hold dear in a place deep within them?

Thursday, August 13, 2009

Some decisions are for the best with Alzheimer's

When it comes to Alzheimer's, some of the hardest decisions we must make tax our soul with a price almost too great to bear.

Sometimes those decisions are made for us when we least expect … and they're the right answer.

The physical and emotional toll of tending to the everyday needs of a loved one with Alzheimer's or any catastrophic illness or injury is costing our nation and our individual families dearly. Caregivers are exhausted and fragile because they're truly on call 24/7 …

What is she doing when I'm not watching her all the time? Is tonight the night he may decide to wander out of the house? Can I leave her alone 15 minutes while I get a shower? How can I get him to eat and drink properly? What if … what if … what if …

Many families justify with good reason their decision to keep a loved one with Alzheimer's at home, certain that the familiar surroundings are the best location for them and enable the caregiver(s) to do their job taking care of their own.

Those 24/7 days and weeks continue to multiply as time goes on. Caregivers are more prone to illness and injury, and what will a family do when that day comes, when the primary caregiver is incapacitated for a day, a week, a month or even longer?

Think about that very carefully …

More tomorrow.

Wednesday, August 12, 2009

Who do we believe anymore?

Or is it supposed to be "whom"? Oh, heck, who or whom cares. It's 4 a.m. and I refuse to follow all the grammar rules at this time of the morning when I'm just now climbing into bed …

But not before I try to keep my head from shaking on the pillow to the news that gets crazier and crazier. So, it's unAmerican to speak up at these town hall meetings against the policies being forced down our throats? Well, Mr./Ms. Federal Government, people are angry, we are very angry.

We're tired of flying coach whenever you choose to ride first class on our dimes and dollars.

We're tired of hearing how nobody in the government really knows where all the billions of dollars in stimulus money went.

We're tired of raiding our couches in search of loose change while corrupt politicians and government employees rob us blind.

We're tired of trying to find a way to care for loved ones when the respite programs we so desperately need are being cut back.

We're tired of being told that government knows best when it really doesn't.

We're tired of your lack of accountability when you then hold us accountable for your costly mistakes.

We're tired of not being heard, so that's why some of us are shouting at the town hall meetings.

No, I don't condone the shouting. I do condone listening and common sense. I do advocate doing what's right and not what will get you re-elected.

Who do we believe anymore? The list gets shorter every day.

When government respects us, we may start respecting it again …

I'll sleep on that one.

Thursday, July 30, 2009

If I knew then what I know now about brain injuries

Thanks to my mom, I have this wonderful collection of letters I sent home during my three years of college. (I was an overachiever and crammed four years into three so that my sweetie and I could get married.) She gave me this packet last year and thought I would enjoy revisiting that period of my life.

I've learned much about myself. First, I thank God my parents had health insurance to cover me four hours away from home. I made several trips to the hospital ER in Evansville, Indiana, and that doesn't count all the accidents I had on campus that didn't require serious medical attention. Second, I thank God I lived on the same floor as a bunch of nursing students. I probably gave them a lot of practical practice.

A letter from January 1977 caught my attention. Walking back to the dorm, I slipped on ice, slide across the ice and hit my head on a glass and metal door. Unfortunately my hood flipped back and removed some cushion.

And that's why I say, if I knew then what I know now about brain injuries …

All the girls have been so sweet to me, even though I've tried to do stuff myself. They'll come up and ask, "Do you remember …" referring to things that had happened Sunday, and I don't recall half of it. I don't remember very clearly being carried out to the car by half a dozen people to go to the hospital. It was a Hughes Hall project. You would have had to see it to believe it.

My sense of balance has been off. I would tend to sway to one side and the person I was talking to would set me straight again. I nearly fell off one gal's bed when I drifted too far right before I realized what I was doing. It's one of the strangest things I've ever experienced. Everyone loved to hear me talk Sunday and Monday because they could barely understand me, and I sounded like a true drunk. But I'm on my way to recovery …

While working on a book about coping with brain injuries, I've learned that we've all got to take better care of our brains. Many people have been incapacitated for a long time or permanently, and even killed by blows to the head that seemed harmless or even funny to witness. I compared myself to a "true drunk."

Kids and adults bop each other on the head for fun or bang their heads against each other or something harder for sport. But the brain can only take so much bouncing around. Some skulls are literally thicker than others. Maybe mine is one of them … in more ways than one.

Think of actress Natasha Richardson earlier this year and her unexpected and tragic death from a bump on the head on the ski slopes. We can't make light of events like these.

Wear a helmet while on your bikes or motorcycles or skating or in unsteady activities like snow skiing. People who don't, they say it's their life, their choice.

Well, it's not just YOUR life. Picking you up off the pavement is not easy for the public servants who have to clean up the scene of the accident. Or if you survive and have permanent serious brain damage, what will happen to you? Or if you survive and look "just fine," the hidden damage may forever alter your personality and what makes you a special person to someone or many.

Yep, your choice.

And if I knew then what I know now about brain injuries, I would have been been a lot more careful with my one and only noggin and gotten myself a fashionable purple and white helmet to match my college colors.

What color is yours?

Sunday, July 26, 2009

The games people need to play

I'm so fortunate to receive another wonderful Alzheimer's story. However, the person who had this experience is the one truly blessed as she described the peculiar behavior of her husband who has Alzheimer's …

While he was shaving today he was looking at me with a stare that I knew something was going to be said. Out came the following - "What do you think this is? Do you think it is a game, young lady? That is it, you think it is a game and it isn't a game at all!" His words surprised me and I answered with, "Oh no this isn't a game! If it were a game it would be Gin Rummy or maybe even TAG (I moved close to him and tagged him)! As I was running away from his chair I was saying: "TAG, YOU ARE IT!"

I am smiling as I am typing to you. My little joke is only mine as he doesn't get it! HA! Such a waste of humor!

No, it's not a waste of humor! It saved your day and may have given you enough adrenaline to get through several days.

Have you ever looked at yourself in the mirror after you've had a good laugh? My cheeks always feel smoother after a laugh attack. It's probably because those muscles got an incredible workout.

And he knew shaving wasn't a game.

And he said something that made sense … to a certain degree.

And he called you "young lady"! What a compliment when you don't feel so young inside or out.

And you transformed yourself back to the glorious silliness of childhood! Tag and gin rummy! And you made him "it!"

Who cares if he got "it"! You did and that's all that matters. It's YOUR moment to remember.

Wednesday, July 22, 2009

When your loved one fires you

Imagine if your loved one "fired" you as their caregiver. That can be devastating or it can be humorous, depending on the circumstances. For an Alzheimer's caregiver, it could be just another day or something memorable.

A woman I've met through my experience writing about Alzheimer's sent me this wonderful interaction …

As I was getting him showered early this morning, he told me, "You sure don't know what you're doing, do you?" I told him, "Perhaps I could find someone to come to the house and bathe you?" His answer was, "Great! Get them over right away because you're horrible!!" I looked at this as a conversation, and the thought carried through three sentences - Yeah!

Yeah … it's the first REAL conversation he's had with her in a couple of months, though he had forgotten it as soon as the words sputtered from his lips. It does not take much to make a caregiver smile, even being told she's a lousy cleaner-upper.

Being fired is the nicest thing that's happened to this caregiver in a very long time. But she'll stick around because he's hired her again without an interview and will likely fire her many more times …

And what an amazing resumé she'll have.

Saturday, July 18, 2009

Walter Cronkite: A far greater man we've lost

It's too bad that so many Americans and reporters exhausted themselves during the recent Michael Jackson media "orgy." They're probably too tired to report on and read or care about the passing of a far greater man who influenced the lives of everyday Americans in so many ways.

Or perhaps they just don't get "it," what we've lost in THIS man, a real person worthy of our attention at his passing … to look at ourselves in the mirror.

Walter Cronkite was the symbol of the evening TV news of yesterday, a figure we trusted to tell us the truth. The truth, even if it wasn't pretty. The truth, even if wasn't glamorous. The truth, what we needed to make informed decisions about our destiny as individuals and as a nation. The truth … lacking more and more in the entertainment news many Americans consume as the extent of "news" they need to be informed citizens.

Walter Cronkite was the journalist I wanted to be, not Woodward and Bernstein for their Watergate reporting. He was synonymous with truth, integrity, accuracy, fairness, professionalism.

He was real. He was a man who exhibited character traits we should encourage our children, our young people to study and commit to heart … not song lyrics or dance steps.

We are probably not shocked by Walter Cronkite's passing as he was in his 90s and lived a long and amazing life. However, we should mourn that there will never be a father-figure like him again that encourages and impresses upon us the need to pay attention to the REAL news of our communities and our world, and to assume the responsibility to think for ourselves.

Yes, we've lost a far, far greater man … at the time our world needs so many more like him.

Thursday, July 16, 2009

Juggling too much

I have an appropriate confession for July 16, which is International Juggling Day: I'm juggling way too much in my life right now.

And I know I'm part of a huge majority of people nowadays.

So, that's why I haven't had time to add to my blog this week or Twitter. Time to put my ADDDDDDD+ mind into a focused orbit. And it's hard. Painfully hard. And it's annoying. Painfully annoying.

We all have levels we mark as being overwhelmed. What's demanding for one person may be a breeze for another. We're told to count our blessings when we see someone who is faced with more adverse challenges or tragedy. I try very hard to do that BUT I then feel guilty for feeling bad about anything not going perfect in my life or when my concerns seem pathetic in the scheme of the universe. It's an endless cycle …

We're also told to "snap out of it!" Didn't Cher slap Nicholas Cage in "Moonstruck" with that directive?

We all have limits but often never know until we reach them. I met an Alzheimer's caregiver whose loved one is declining rapidly. I listened to what was not said, the question that they can't bring themselves to say aloud: "Am I selfish if I'm reaching the point where I can't cope with daily care anymore?"

And this person is part of a silent majority that could be beaten down by this damn disease without support.

Yes, there is a point where charity and compassion demand too great a toll. Are we selfish when we no longer have the physical and emotional capability of daily care? Do other family members or friends or neighbors think we're lazy or unfeeling when our capacity to feel the blood flow through our veins weakens by the day from the stresses that drain us?

Let them walk in our well-worn shoes one month, one week, one day.

Whether we are devoured by caregiving duties or having extended ourselves too far because we don't know how to say no or yes, our pain is real. There are times to be persistent on our own and times to ask for help.

Don't think of it or call it a "pity party." Refer to it as a moment of reflection that is vital to our destiny, our basic survival.

Then we will more clearly see what we're really juggling.

Monday, July 6, 2009

My 30-year-old datebook

I've been consolidating a lot of paperwork, saving some of it digitally and recycling the paper. Among my boxes of goodies are most of the desk calendars I've filled since 1979, the year I got married. The pack rat in me just can't part with them completely, so I scanned them to revisit.

Yes, 1979 seems a long time ago. My entries start shortly after I graduated from college in May and returned home to Anderson, Indiana, to work and plan and pack until Roger and I got married July 21. His future employer, Caterpillar Tractor Co., back then, now Caterpillar Inc., helped us select that date because he started work in June as soon as he graduated, and we had to fit the wedding in during the company's traditional two-week July vacation. So, Saturday, the 21st, it was.

I worked at the daily newspaper at home while Roger started work and set up housekeeping in Peoria. I was watching every penny carefully as I found my detailed spending records jotted on the calendar pages. On June 1, I had two Cokes at 30 cents each, spent 88 cents on lunch and $1.35 on dinner. I really splurged the following day with 36 cents on a slush and $7 for a full tank of gas. On the 10th, I managed to get out of the grocery store and spend only $2.40.

On June 16, I boldly penned, "5 weeks!" until the big day. And then there's the phone number for some guy named Kevin … hmm …

I worked on a variety of stories for the newspaper that month, including a series on senior citizens with topics such as a senior center, an older adult conference and a session on death and dying. Ah, but there was also a lighthearted piece on musical gourds. Bigger hmm …

I drove to Peoria for a job interview on June 27 and got to see how Roger had decorated our new home. BIGGER hmm … And suddenly it was three weeks until this two-bedroom paradise was to be my address!

On July 1, I called hotels in Indianapolis to find a place for us to honeymoon for a few days. The Marriott was $49 for the first night, $25 the second night, and it included a champagne breakfast! Wow! Fancy stuff! Book it, Danno!

My last day of work was July 12, and I was busily filling in the back of the calendar that had space for budgeting and expenses. I was trying to be a responsible, yet frugal, bride. Monthly rent $245, electricity $25, annual renter's insurance $50. Cable TV? Where's a slot for that? Hmm …

I crossed out church donations and substituted cable.

My final days as a single woman all summed up neatly in an old calendar. What a sentimental hoot.

Now, if I could just remember who Kevin was … hmm … hmm …

Sunday, July 5, 2009

Wishing for a butter memory

Did you ever notice in a restaurant how pats of butter are usually wrapped individually in silver or gold foil when they're served with rolls or bread?

Sometimes they're solid from being refrigerated immediately before they're served, or they're kind of soft because they've been out for a while.

However you prefer yours, that shiny packaging often makes me think of fancy candy hidden inside, kind of tempting. Yes, it ruins many a diet because a lot of folks who use butter at the restaurant table wouldn't do the same at home. I guess there's something about unwrapping that glittery package that makes us crave it more.

Now, I know it's butter inside. You know it's butter inside. It's a condiment, not an item eaten solo, though I have known a few people that put on a slab of butter that's larger than the food it's decorating.

Imagine someone with Alzheimer's or dementia who sees that in the bread basket. This person can't read anymore and isn't communicating much verbally, so they're not going to ask what it is.

What do they see? What does shiny paper wrapped around something small represent? Could it be candy? It's got to be something special and sweet, like the precious and delicious treats of childhood … or any stage of our lives.

Why on earth am I even talking about this? Because I recently saw a person with Alzheimer's open one of those shiny pats of butter and roll it off the wrapper like it was candy and eat it.

What do you do? Nothing. If they thought it was candy, so what. Must have been okay because they didn't make a face. Do you scold them? Make a scene? Heavens no!

This is one of those moments in caregiving that you just let it slide … though you might subtly move the basket a little bit away. This is one of those moments that you will better comprehend what Alzheimer's has taken from your loved one: the memory of the difference between candy and butter in a shiny packet. Tuck this single image in a special place in your memory because it will make you smile one day, many days, when you need a lift the most.

Wednesday, July 1, 2009

Blame it on the brain #2

What was that word … yes, aphasia.

Imagine knowing exactly what you want to say and that's not what comes out of your mouth. Some folks who have had aphasia have described it like being in that Biblical Tower of Babel. After a stroke, brain injury or disease, some have difficulty understanding what others are saying and sometimes others don't understand what they're saying. It's truly like a foreign language that leaves you frustrated.

And it's frustrating for loved ones who have to train themselves to communicate differently. They need to adopt a new level of patience and compassion because it takes time to make sure they understand each other. And that's a little hard in this fast-paced world that has become quite addicted to instant gratification and instant answers.

I've learned much just by taking that vital time to simply listen to someone tell you what's on their mind. Many that I've communicated with apologize for their difficulty, but I tell them it's okay. I'm there to listen even if they can't express every word they want when they want.

Yes, you can blame it on the brain that has some wires crossed. But remember this: aphasia is not a lost of intellect. People with aphasia are not "stupid." They communicate at different levels and many improve by practice, practice, practice.

Practice the art of listening. You never know when it may open the door to the most extraordinary conversation of your life.

Tuesday, June 30, 2009

Blame it on the brain #1

Say "aphasia."

Now, do you know what it means?

According to one of my dictionaries, it's "the partial or total inability to produce and understand speech as a result of brain damage caused by injury or disease."

Too sterile. I like the way the folks who have it have explained it to me. It's not so simply this: You have the word(s) in your mind, you know exactly what you want to say, but something else comes out instead or perhaps nothing at all.

While working on these brain-related books (brain injuries, strokes, brain tumors-brain cancer) I've been meeting a lot of individuals and families who cope with aphasia … a word that was likely never in their vocabulary until they had to deal with it.

Like the young, highly educated woman who had a stroke at about age 30 and when talking to her mom, sometimes "Dad" is what comes out. With a wink, her mom told me she only gets a little miffed when her daughter says "Grandma" instead of "Mom."

Blame it on the brain that's battling its way back from an injury, which could be from a stroke, disease or an external force. Not everybody who has those conditions has aphasia, and among those who have it, every case is different.

We'll talk about frustrating … next blog …

Sunday, June 28, 2009

It's the Alzheimer's, stupid! #3

Where was I … oh, yeah, more "It's the Alzheimer's, stupid!"

What else angers caregivers?

Being told by clueless people that there's nothing wrong with their loved one because he looks "fine." That basically translates into: "The problem must be with YOU."

Well, world, I'm going to announce something that will shock you! Ready? Most folks with Alzheimer's look "fine." It's what we cannot see that is the problem.

You may see two healthy "seasoned" people getting out of their car in the handicapped parking space. They have the disabled plate or tag hanging off the rearview mirror. You watch them enter the store and think, "How dare they! There's nothing wrong with them! They're faking it!"

Well, many a caregiver has shared with me the "time bomb" that could go off without much notice in their loved one with Alzheimer's. They may have to end their shopping quickly at times for a variety of reasons, because their loved one may:

• Become agitated and/or uncomfortable by too many people or too much noise in the store.
• Wander away and get lost, even one aisle away.
• Start opening packages because their brains don't comprehend anymore that something doesn't belong to them until it's been paid for.
• Need to go to the bathroom but don't understand how to get into a stall by themselves. And it's OK for moms or dads to bring into their respective restrooms a young child of the opposite sex, but society has not gotten too keen yet on a husband needing to take his wife into a public restroom.

Yes, it's the Alzheimer's, stupid.

Saturday, June 27, 2009

Spread those angel wings, Farrah

Sadness swept me twice on Thursday. First, when I heard of Farrah Fawcett's passing after a brutal battle with cancer.

Second, when the news of her passing was tossed aside like garbage to make room for news of Michael Jackson's sudden death.

You would think the world had ended. Well, it almost did because the Internet was reportedly maxed out from the surge of news seekers and messages of shock.

If only the world would convert a fraction of its energy and money mourning Jackson's death into REAL action and compassion in helping REAL individuals and families cope with REAL catastrophic life events. The money that will be expended on Michael this and that would put a huge dent into funding research into fighting the cancer that killed Farrah and people you actually know.

The money that will be spent on magazines and other media about Michael's life and death would give thousands of families the respite they desperately need in coping with everyday caregiving, the REAL stuff that doesn't make the entertainment news because it's not sexy enough.

And the TIME, the precious moments of life that will be lost in over-consumption of news about Jackson's odd life could be converted into volunteerism to teach children to read, cheer the lives of shut-ins, or simply offer some kind deeds to help many people survive another day.

Our nation's obsession with celebrities is getting ridiculous. If the people who follow that show about the couple with a half-dozen kids or whatever applied the same amount of time to their own families as they do on watching and talking about that over-hyped garbage, imagine the possibilities.

To the people who will spend the coming days wailing about Jackson's demise … get a life, get your own life. To the children who think their lives are over because the King of Pop is dead … get some new REAL role models.

Farrah wasn't perfect. She had more than her share of "blonde moments." Her child is in jail. One of history's most famous sex symbols had to face the embarrassment of the world finding out she had anal cancer, but look how strong it made her. She never gave up and shared her story to encourage other patients to fight that damn disease with every ounce of energy they can muster because we are stronger than we will ever give ourselves credit for.

She earned those angel wings the hard way, the brave way, the human way.

I'm not heartless about Michael Jackson, who was born the same year I was. I hope he finds the peace he never found on this earth. I'm glad that he's not being subjected to one more person taking advantage of him and making money off him. He's left all that far behind.

It's time we as a society do the same and put our energy, time and money into a REAL life, our loved ones' lives, OUR life. You may not make the 24-hour news channel, and that could be the best news of all.

Friday, June 26, 2009

Dare to ignore those who need help the most

I'm not a scholar of the Bible but one phrase jumps out at me, and, depending on which version it is, it's something to this effect:

"Inasmuch as you have done it to one of the least of these my brothers, you have done it to me."

Now, it doesn't matter what religion you are, because this is beyond religious labels. This is the basis of our human existence and connection on this planet.

Well, Illinois, the lovely state where I've resided for almost 30 years … the home of a growing percentage of wacko politicians and embarrassing scandals … the land of a string of greedy, corrupt individuals … yes, Illinois, is out to make history again as we teeter on a wave of cutbacks that will prove disastrous to the people who can do little or nothing for themselves, the disabled through birth, accident, disease or crime …

We now have a governor and legislature that are trying to wade out of this mess created by years of misplaced priorities, feeding pet projects, building monuments to themselves, mindless wastes of money, and simple loss of connection with the everyday lives families and individuals face.

It's time for politicians to stop being politicians. It's time to stop playing this political game of "I'll do this for you if you'll do this for me," tacking ridiculous self-serving amendments onto meaningful legislation or selling the souls of one segment of society to overstuff another. It's time to get past protocols that embellish egos so brightly that some people can't seem to stop admiring themselves in the mirror while many worlds fall into shambles around them. It's time to quit filling government job openings or college slots with friends and families and neighbors who don't have the credentials to do the job or who waste the professor's time.

We are a nation at the brink of collapsing … one individual at a time … and it's happening. Take away the respite care that gives caregivers the break they need … take away the group homes that provide specialized care and a unique emotional support system … take away the nursing home beds that provide essential 24-hour care in our loved ones' final days … take away the after-school and summer programs for children who are an inch away from becoming a casualty statistic in the streets … take away the mental health services that target those who have lost control of their lives …

Go ahead, dare to ignore those who need help the most.

Do that, and we will pay a price that is beyond the calculating capabilities of the most sophisticated minds and computers in the world.

Do that, and we will witness a wave of chaos, frustration, anger, abuse, abandonment and even death, because the human emotional support system will have been severed, stretched and stretched and stretched to a point where it snaps like an old dried out rubber band that falls in brittle pieces to the floor.

And I don't know about the rest of the country, but now Illinois has stopped funding the burial of indigents … just in time for summer when temperatures and tempers are already hot enough.

We all must accept responsibility for our fellow human beings, but we cannot pick up all the pieces when people refuse to fulfill their obligation as parents, as children, as spouses, as family, as friends, as employees, as bosses, as public servants … choosing instead to feed their own selfish needs and sing loud enough to drown out the cries around them.

The PEOPLE of Illinois, of any state, need to stand up and remember that those who need our help the most should not be the easiest to discard. These individuals didn't ask for birth defects, Alzheimer's, a drunk driver to hit them, to be shot in the head …

If we can't remember that first quote about caring for the least of our brothers, then give this one a try: "There but for the grace of God go I."

Wednesday, June 24, 2009

It's the Alzheimer's, stupid! #2

Let's keep tweaking this "It's the Alzheimer's, stupid!"

What else angers caregivers?

How about asking the caregiver or family member all about the disease when that person is right there. You know, questions like, "So, how long has he got?" or "You are going to be put her in a nursing home, aren't you?"

People with Alzheimer's aren't stupid. Now, people who ask those terribly insensitive questions, that's another thing …

Hmm, it's kind of hard to explain Alzheimer's and how it's a horrific, fatal disease while the person with it is right there. Imagine hearing every day that you have a fatal disease and that your brain is all screwed up and so on and so on. And if you have memory loss, it's like hearing the diagnosis for the first time every time.

Imagine the physical and emotional toll that takes. I know one family that stopped talking about the loved one's cancer in front of him because his Alzheimer's made it devastating to hear every time.

If you want to learn first-hand more about Alzheimer's, then ask the caregiver or family member off to the side and then be willing to hear the answer. (Just don't point at the person with the disease because they notice those sort of things and it makes them uncomfortable.)

I can guarantee that everybody has a different answer because Alzheimer's doesn't follow rules of logic or consistency … or mercy.

It's that damn Alzheimer's, stupid!

Tuesday, June 23, 2009

It's the Alzheimer's, stupid! #1

Let's twist the phrase that helped elect Bill Clinton … "It's the economy, stupid!" to "It's the Alzheimer's, stupid!"

Would that be a catchy enough phrase to attract and educate several generations that had better get used to that A-word and what it really means?

What angers caregivers?

Let's start with talking about the person with Alzheimer's as if they're not standing or sitting there. I know I've said this one before, but it needs constant repeating: They may not remember you or your name, but they remember the pain of being ignored or treated like a child. Acknowledge and engage them, even if they may not say much, because it's the Alzheimer's that's keeping them from finding the right, if any, words to participate in a conversation.

But they're still human and need to connect with other humans. You can be a quiet comfort by just acknowledging they're still HERE!!

Sunday, June 21, 2009

Go ahead! Teach the world about Alzheimer’s!

Yep, you’ve listened to the medical lingo, you’ve read all the “facts” about Alzheimer’s, you’ve witnessed its effects every day.

You could write THE book about this damn disease!

Well, do it! Start telling the world about this horrific disease because a lot of people are not paying attention. They’re ignoring the fact that Mom or Dad or Uncle Joe or Aunt Bea or whoever is having problems with memory or social skills. They blame whoever’s living in the same house with them for “letting it happen” or for telling lies.

Teach the world NOW how to help your loved one, how to help you. Don’t wait until you’re too exhausted to educate or they’re too far away emotionally to listen.

Saturday, June 20, 2009

Alzheimer’s: Stop the cover-up!

If you’re secretly covering up for a loved one to not anger or embarrass them, or to save the family from learning the truth about Alzheimer’s or dementia, stop it right now!

Stop the cover-up! Educate yourself, be open with family members and start making sensible plans based on common sense and the demands of our complex society.

Those so-called thousand points of light start with changing your own light bulb first so you can see better the changes that will evolve in your world. Prepare for them before they seize control of you.

Friday, June 19, 2009

Alzheimer’s: Go ahead and fight!

Are you going to let a person who has no business driving anymore, because of the effects of Alzheimer’s or dementia, continue driving so YOU can avoid an argument?

Then I want to you to imagine YOUR beautiful child or grandchild riding in that car with that person when they become confused at the wheel or are not paying attention.

The fight will easily fade. The horrors of an accident will not.

Go ahead and have that long overdue confrontation if necessary. Just make sure every word is fueled with compassion because your heart and life will be better for it.

You WILL survive that hard moment.

And so will everyone you love.

Friday, June 12, 2009

Another reason I love brain injury camp!

Here's the answer to that burning question from yesterday: Did John remember my name Thursday at brain injury camp?

Yes, he did! Despite the sprinkles and dark skies, it was another beautiful day of me saying "John!" every time he said, "Monica!" … plus "How ya doing?" and the everyday things people talk about.

I sit for a while next to another man I hadn't talked to before. As the noise of the rest of the crowd grows around us, I have to lean closer to hear what he's saying, and it takes a while to understand, but I ask him to repeat because I didn't catch parts of it. I wasn't going to pretend I got it and just say "uh huh."

His injury happened in 1988.

He's 38 years old.

He asks what I do, and I explain how I'm working on the book about coping with brain injuries. He asks if I doing lots of research. It takes me a while to grasp that he was saying "research," with an extra effort to get out the second syllable.

I want to learn more and I ask if he wants to go outside where it was less noisy. This is a man who is slumped in his wheelchair but gets himself around most of the time extending his muscled legs straight in front of him one at a time to move. We get to the door and he gestures for me to go first. I smile and say, "Thank you, sir." He nods at the compliment.

Outside, I lean close again to hear the words of fragmented sentences.

"How … are … you …" I repeat as he says each word. "Affected … by … the …"

Hmm, I really have to test my brain trying to understand that final word. Research? How am I affected by my research?

No, he shakes his head.

Re-something? Then he gathers extra energy to repeat the second syllable, "cess."

"Oh, I get it! How am I affected by the recession?"

He smiles. Victory! I get it!

"My work continues despite the recession. Families face challenges like Alzheimer's, strokes, brain tumors and brain injuries every day whether there's a recession or not. Unfortunately, that need never ends."

He nods in agreement …

I learned a lot at brain injury camp Thursday.

What did you learn?

Thursday, June 11, 2009

I wish every day was brain injury camp

I love the people at brain injury camp … the campers, the counselors, the staff, everybody.

I love watching what freedom does to persons with brain injuries. It literally sets them free to be themselves.

Last year at the first camp I attended, I wanted to cry the first day because I was so overwhelmed by the emotions of hearing stories of accidents, violence, lapses in judgment, being in the wrong place at the wrong time. The list goes on …

Last year at the conclusion of the first day, I thought I wasn't cut out to continue doing this series of coping books, the next three volumes, one each on strokes, brain injuries, and brain tumors-brain cancer. I thought I wasn't strong enough.

The next morning, I woke up with an infusion of strength more powerful than a thousand bowls of Wheaties. I couldn't wait to get to camp to see these individuals again! I realized that I had absorbed and processed a lot of emotions all within a short period and that "I" would be okay.

And the second and third days of brain injury camp last year, I was talking and laughing with individuals who were so grateful to be "normal" for a week. How they lifted and educated me! I couldn't wait until next year!

And next year is here! I recognized many of the returnees and saw some new faces. I love John, who stopped and looked at me as I got out of my car. "I know you! Wait, now don't tell me." I could see him searching the many file cabinets of his brain looking for my name. I laughed as he made a goofy face and asked for a small clue. I waved my pen in the air. "You're the writer! Duh, you'd think I had a brain injury."

It was okay finally revealing my name, and all day long, every time we'd see each other, he'd say, "Monica!" I'd respond, "John!" When I left for the day, I said I'd see him tomorrow and we both had a good laugh over the fact that we'll probably go through the same thing the next morning.

And that was okay.

In fact, it was beautiful.

It was equally beautiful seeing these campers, counselors and staff literally embrace each other this magical week as the persons with brain injuries are "normal" in everyone's eyes. No one is staring at them when they walk or talk funny. No one is steering their children away from the weird looking person in the wheelchair. No one is judging or ignoring them.

What's the song that says something about wishing every day was Christmas because it's such a wonderful day …

I wish every day was brain injury camp … in the REAL world, OUR world.

Now, that's heaven on earth.