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.