Let Your Own “Heartsong” Sing for Mattie

In our lives we encounter people who inspire us. Among them, there will be a few very special individuals who touch us more even more deeply. Their unique qualities resonate with us on a different level - even if we never meet them face to face. For me, one of those people is Mattie Stepanek, self-described poet and peacemaker. I think after you read this, you too will be amazed by his incredible spirit and courage. This short blog post cannot possibly do justice to the power and gentle beauty of his writings and his accomplishments; I hope after you read this that you will be moved to learn more about Mattie and experience his hope and passion for life.

Mattie had a rare rare form of muscular dystrophy, which took the lives of his three siblings and caused him great disability and pain. His mom also ended up having the adult-onset form of the disease. But Mattie never let let the illness that affected his entire family rob him of hope and positivity.

Young Mattie began writing poetry at the age of three. His mother said he would ask her to type what he said out loud and so his first poems began as dictations. His poetry is full of what he called “heart songs” and their message of hope, "A heartsong doesn't have to be a song in your heart. It doesn't have to be talking about love and peace. It can just be your message. It can be your feeling... It's your message, what you feel like you need to do,“ said Mattie.

“It would be easy for each of us to stay shocked, angry, hurt, or sad with all the difficult things that we face in life. And even though it is difficult and sometimes almost overwhelming to examine feeling related to loss and loneliness and alarming turmoil, it is the only way that we can grow... We cannot let sad or traumatic events, or even acts of terror, be the death of hope.”

Mattie had three wishes: to publish his poems and spread the message of hope, to talk to Jimmy Carter, whom he had admired as a peacemaker, and to share his heartsongs on Oprah Winfrey’s TV show. He achieved all them! Five books of his poetry were published (of which I have three on my bookshelf) and two more books of his writings were published after his death just before age 14. 

~* Watch the MDA Video Tribute to Mattie *~

He appeared more than once on Oprah’s show, and she said he was one of her all-time favorite guests. Oprah asked him about what he knew for sure about life, and Mattie answered,

”That our attitude is a choice. I believe we can decide to be miserable, to roll ourselves in the dirt and say, 'Hit me again.' But when we do that, we're missing out on so much! I know for sure that while it's great to have role models, we should never try to be anyone but ourselves. I know for sure that when we use words, not bombs, we all get peace. I know for sure that there's something bigger than the here and now—some people call it God, some call it Buddha, some call it Yahweh. I know for sure that we don't need to be afraid of death, because we'll be greeted by something better on the other side. And I know for sure that life is a gift to be treasured—and that we must always live it to the fullest.”

Mattie became friends with former president Carter, who gave the eulogy at his funeral and said of him, “We have known kings and queens, and we've known presidents and prime ministers, but the most extraordinary person whom I have ever known in my life is Mattie Stepanek.”

Mattie’s poetry is simple, evocative, spiritual, and passionate. He asks us to notice things around us and implores us to look within. I’ve selected just a few of my favorite poems by him, and copied them below. I hope you will want to read more of Mattie’s beautiful words. All his books are available on the Mattie J.T. Stepanek Foundation website which spreads his message of hope and peace through educational and recreational programs and outreach activities.

Poems by Mattie Stepanek...

~ Making Real Sense of the Senses ~

Our eyes are for looking at things, 

But they are also for crying

When we are very happy or very sad.

Our ears are for listening,

But so are our hearts.

Our noses are for smelling food,

But also the wind and the grass and

If we try very hard, butterflies.

Our hands are for feeling, 

But also for hugging and touching so gently,

Our mouths and tongues are for tasting,

But also for saying words, like

“I love you,” and

“Thank you, God, for all these things.”

April 1995, age 5

~ Heartsong ~

I have a song, deep in my heart,

And only I can hear it.

If I close my eyes and sit very still

It is so easy to listen to my song.

When my eyes are open

And I am so busy and moving and busy,

If I take time and listen very hard,

I can still hear my Heartsong.

It makes me feel happy.

Happier than ever.

Happier than everywhere,

And everything and everyone in the world.

Happy like thinking about

Going to Heaven when I die.

My heartsong goes like this-

I love you! I love you!

How happy can you be!

How happy can you make this whole world be!

And sometimes it’s other

Tunes and words, too.

But it always sings the 

Same special feeling to me.

It makes me think of Jamie, and Katie and Stevie,

And other wonderful things.

This is my special song. 

But do you know what?

All people have a special song

Inside their hearts!

Everyone in the whole world 

Has a special Heartsong.

If you believe in magical, musical hearts.

And if you believe you can be happy

Then you, too, will hear your song.

March 1996, age 6

~ For Our World ~

(Written on September 11, 2001)

We need to stop.

Just stop.

Stop for a moment.

Before anybody

Says or does anything

That may hurt anyone else.

We need to be silent.

Just silent.

Silent for a moment.

Before we forever lose

The blessing of songs

That grow in our hearts.

We need to notice.

Just notice.

Notice for a moment.

Before the future slips away

Into ashes and dust of humility.

Stop, be silent, and notice.

In so many ways, we are the same.

Our differences are unique treasures.

We have, we are, a mosaic of gifts

To nurture, to offer, to accept.

We need to be.

Just be.

Be for a moment.

Kind and gentle, innocent and trusting,

Like children and lambs,

Never judging or vengeful

Like the judging and vengeful.

And now, let us pray,

Differently, yet together,

Before there is no earth, no life,

No chance for peace.

Sept. 11, 2001, at age 11

Tuesday-Newsday #36

Extra! Extra! What’s in the news today? 

Our sujbects are Pain Rx, Patient News, Cancer, and Female Pain Conditions. Our final item, in the category of Managing Your Chronic Pain, is part two of last week’s piece “Healing Your Chronic Pain And Finding Relief," by Gabrielle Gawne-Kelnar.

Let Me Know: If you’d like me to watch for articles on your pain condition, just drop me a note in the comments section below.

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!

====++++====++++====++++====++++====++++===

*PAIN Rx

Obama orders FDA to help ease critical nationwide drug shortages

Drugs That Can Cause Aches & Pain: Fibromyalgia Symptoms Aren't Always Fibro

NSAIDs and Acetaminophen Tied to Kidney Cancer Risk

Topricin Pain Relief and Healing Cream Awarded Patent for Topic Treatment of Neuropathy

*PATIENT NEWS

Ghost Writing Persists in Major Medical Journals: Analysis of 6 journals found 'inappropriate authorship' despite ethical concerns

10 Totally Cool and Incredibly Useful Medical Gadgets and Apps

*CANCER

Drug Cuts Cancer Bone Pain in Half

Marijuana component could ease pain from chemotherapy drugs

Many cancer survivors suffer from PTSD, says study

*FEMALE  PAIN CONDITIONS

Aromatase Inhibitors Ease Endometriosis Pain

Gene Mutation Found in Uterine Fibroids

Uterine Fibroid Patient Advocating For Focused Ultrasound

Removal of Submucosal Fibroids Reduces Recurrent Miscarriage

Antibiotics Beat Cranberries at Fighting Urinary Tract Infections in Study

Vulvodynia more common than previously thought

Yeast Infections linked to Vulvodynia, study suggests

New Protocol Helps Avoid Diagnostic Laparoscopy for Chronic Pelvic Pain

*MANAGING YOUR CHRONIC PAIN

Healing Your Chronic Pain And Finding Relief (Part 2)

By Gabrielle Gawne-Kelnar from the site: ‘The Therapist Within’

Life is an Experiment in My Haunted Apartment

When I think about it, it seems like my apartment is haunted at Halloween - and pretty much most of the year!

Sometimes when I wake up in the morning I feel like death warmed over. Struggling out from under the covers is like a digging out from a grave and becoming a zombie, just human enough to barely walk around but not much functioning between the ears. I’m definitely like this when I don’t get enough sleep due to my pain, which happens far too often.

I can be a witch when frustration over pain and my limitations become overwhelming. I even have a black cat for my familiar, my mischievious little Jaspurr! (and you can read about him and the lesson he teaches all of us HERE) Not only do I feel like an old hag, but I can get snarly and short-tempered. I’m not proud of it, but we all have our days of acting out. 

“Everybody's a mad scientist, and life is their lab. 

We're all trying to experiment to find a way to live, 

to solve problems, to fend off madness and chaos.” 

~David Cronenberg 

I usually feel cold, particularly in the wintertime, and am always wrapped up like a mummy in layers of clothes and my ever-present bathrobe. I am actually in there, somewhere! With my foot and hip problems, I can be quite clumsy as I shuffle around the apartment in my slippers. 

My joints ache so much I think my skeleton is trying to get out of my body and run away. Unfortunately, it’s stuck where it is and I can’t run away from my aches either.

I may be part werewolf when I howl and whine at times when I’m really in a bad way and need to let it out. I know that the snuffling and snorting from my allergies surely fits here!

I think I must be Frankenstein’s monster. It’s like my body parts have been assembled willy-nilly from different donors and don’t really fit properly together. Given my forgetfulness and other nutty issues, I’m certain that mad scientist has given me the brain of ‘Abby Normal’! 

Most often I am a ghost. I haunt my apartment and rarely leave my comfortable environs. My family and friends do get some rare sightings of me as I flit in and then out of events - was she really here or just a figment of our imagination? I’m especially ghostlike when I cancel plans with people when I’m in too much pain to go anywhere; they are probably wondering if I truly exist since it happens so often!

Wouldn’t it be fantastic if we could just chant an incantation or wave a magic wand and be well? Or if all we needed to be healed is to drink a bubbling potion or steaming witch’s brew (minus the bat’s wings, grave dust, and zombie toenails!) There’s no spell book, no step-by-step guide, no simple list which tells you how to keep your body functioning perfectly and what you can do to overcome physical problems when they happen. 

All we can do is keep trying new things as they come along and be open-minded. We’ve got to be willing to follow through with treatments or therapies which might be time-consuming, uncomfortable, expensive, or inconvenient. We must be determined when a treatment fails to work for us to pick ourselves up and push on to the next one.

So here’s my message this Halloween weekend: Life is an Experiment! It’s all about trying this or doing that, whether we are talking about health or relationships or just life in general.

So when you look around your own haunted house, determine whether you have shut away into the dungeon any part of your life which needs to be moved to the laboratory and experimented with again. Don't be afraid to take a scary risk because there could be an unexpected transformation for the better - one which lasts far beyond the full moon and into the bright and hopeful light of day.

~* Happy Halloween! *~

Tuesday-Newsday #35

Tuesday-Newsday time! Today I’ve got info on Chronic Pain, Weather & Chronic Pain, Pain Rx, and Chronic Fatigue Syndrome / Fibromyalgia. The last item is under the banner of Managing Your Chronic Pain. Written by Gabrielle Gawne-Kelnar, the post is called, “Healing Your Chronic Pain And Finding Relief (Part 1).”

Let Me Know: If you’d like me to watch for articles on your pain condition as they appear in the news, just drop me a note in the comments section below.

WARNING:  My goal is to provide the most up-to-date news I can, which you can then take to your personal doctor and debate the merits of before you try it. I do not endorse any of the docs, treatments, info, and meds in anything I post nor can I guarantee they are all effective, especially not for everyone. I always include the citation, source, or website so you know where it came from. As is the case with any health info, ALWAYS get your doctor's opinion first!

====++++====++++====++++====++++====++++===

*CHRONIC PAIN NEWS

More patients skip surgery & put up with pain, due to economy

Chronic Pain Care for Women Cost Nearly $13 Billion in 2008

Your Help Needed: Please fill out the “Coping with Pain Survey”

Help us gather more information that will allow American Pain Foundation (APF) to better serve you and provide information that is targeted to meet your needs. We are interested in your pain treatment. Please complete this survey by October 30, 2011:  APF October 2011 Survey: Coping Techniques

*WEATHER & CHRONIC PAIN

MediClim offers Health Weather Alerts for Migraines, Diabetes, Heart Disease, and more

MediClim is a health warning system that takes into account a multitude of weather parameters known to affect health, such as humidity, barometric pressure and temperature. It can warn people when they are most susceptible to health flare-ups related to weather issues. Subscribers receive emails alertsif specific weather conditions are due in their area may cause them a problem. Click on the headline to check out MediClim.

*PAIN Rx

Senators propose relaxing FDA conflict rules to speed up review times for medical devices

The Danger to Patients Continues: Authorities perplexed by drug shortages

Unbearable itch may no longer be a pain in anaesthesia

*CHRONIC FATIGUE SYNDROME and FIBROMYALGIA 

Chronic Fatigue Syndrome: Study Supports Autoimmune Disease Theory

Fibromyalgia & Chronic Pain LIFE™ magazine: November/December issue

Fibromyalgia: Effect of Treatment With Pregabalin and Relation to Pain Response

Patients with Fibromyalgia Find Comfort in Massage Myofascial Release Therapy, study finds

*MANAGING YOUR CHRONIC PAIN

Healing Your Chronic Pain And Finding Relief (Part 1)

By Gabrielle Gawne-Kelnar from the site: ‘The Therapist Within’

When you're "Feline" it's impossible - you've gotta do more than "scratch" the surface

Halloween is coming and my impish black cat, Jaspurr, is busy getting into mischief as usual. Watching him play makes me think of last spring when we noticed there was something wrong with him. In the journey we took to help him get better, he taught me how facing the “impossible” is often not what we expect - and pushing past it might just be the best thing for us. 

If you’ve ever been told by a doctor that you’ll have to do a treatment or therapy which sounds too hard, too complex, too overwhelming... then you need to read Jaspurr’s story. Who would think that a cat has an important lesson to teach all of us chronic pain/illness patients?

This is my rascally Jaspurr - with his amazingly flexible tail.

When we were first married 19 years ago, we adopted two Abyssinian cats and one of them developed severe asthma. It was a difficult road to diagnosis and finding the right treatment, but eventually we got it under control with a combination of medications, including steroids. This sweet cat lived a great life but developed pancreatic cancer and died within seven days. The vet speculated the high dose steroids very likely contributed to his getting cancer. 

About a year later, we adopted a pair of shelter kitties. A few months later we began to hear that familiar cough. What were the odds the next cat we’d get would also have asthma? My sweet little black cat was indeed diagnosed, but the vet made a treatment suggestion we didn’t expect. Instead of the same pills we used to treat our last cat, she said there was a new option. Humans with asthma use inhalers; the vet said a company had developed inhalers for cats called AeroKat (they also make inhalers for dogs and horses!). She explained that using inhaled steroids is better for the cat because the side effects are not as extreme and it doesn’t stay in the tissues. It also can give immediate relief during an attack unlike a pill.

We visited the AeroKat website to learn how the system works. After reading about it and watching demonstration videos on YouTube I told my husband, “This is IMPOSSIBLE! There is *no way* Jaspurr will allow us to hold a mask over his face and then stay still to breath in the medication!” 

As we discussed the issue, we kept coming back to how our first cat had died of cancer and how we wanted the best treatment possible for Jaspurr. Sure it seemed to be better, but would he accept it? We decided it was best for the cat so we’d give it a try even though we never thought it would work.

The first time we tried it, Jaspurr scratched up my hubby's legs and ran under the bed. We almost threw in the towel, but then I found a really helpful Yahoo group for people who were using the AeroKat system called FAIM: Feline Asthma Inhaled Medication Users Group. They offered advice on how to get Jaspurr used to the mask before using the inhaler. Using some of their tips and devising a few of my own as I flew by the seat of my pants, I gradually got the cat used to it by enticing him with treats he was crazy for and holding the mask over his face - at first for just one second and then longer as he relaxed and got used to it. It took about three weeks of training, 4 sessions a day, sticking to the same exact sequence with a struggling, unwilling cat. But at last - success!

Cuddling together:  Jaspurr gets a kiss from our other cat, Cruiser.

I truly believed Jaspurr would never accept the AeroKat. I was wrong. I was more than wrong! He became so willing and eager that we decided to make our own YouTube video showing how we trained him and demonstrating the AeroKat system (You can watch our video HERE). But even further beyond the “impossible” - the company which makes AeroKat liked our video so much they asked if they could use Jaspurr as the demonstration cat on their website!

Boy, did Jaspurr teach us all a lesson!

If your doctor prescribes a difficult therapy, a complex medicine regimen, or any kind of treatment which seems to be *impossible* to incorporate into your life... think of my Jaspurr. Don’t be so quick to dismiss it and try to ‘scratch’ beneath the surface. Is this treatment or medication the best thing for you? Will it improve your health and make it possible for you to have a better life? If so, then you owe it to yourself to give it an honest try and commit fully to following through. 

Never say “it’s impossible”!