Showing posts with label #Schwannomatosis. Show all posts
Showing posts with label #Schwannomatosis. Show all posts

Friday, May 17, 2013

Roderick's Story - A Lesson in Perseverance





World NF Awareness Day





Click:
Roderick's Story - A Lesson in Perseverance


Details: Diagnosed with a schwannoma tumor (schwannomatosis), Roderick Ball, Jr.,
and his family went to Johns Hopkins to have a tumor -that had grown through his abdomen, lower back and spinal column - treated. Treatment involved multiple surgeries with the goal of reducing the tumor, while preserving this patient's (a young boy) functions. His treatment and care was provided by a team of physicians, therapists and nurses in neurosurgery, neurology, orthopedics, plastic surgery, general surgery, and pain management.







Just remember, you can do anything you set your mind to, but it takes action, perseverance, and facing your fears. --Gillian Anderson  

















Friday, May 10, 2013

Not talking Burl Ives... Just Bridger, an oddball tree and me


Someone's sitting in the shade today because someone planted a tree a long time ago. 
-Les Brown



I remember walking my dog, Bridger, some years ago in Moscow,* the small university town where I lived and worked almost a decade. I bought a house in the historical section of town away from keg parties, boisterous yells at 2 a.m., and motorcycle revs at dawn; the streets were calm no matter night or day. 

There was a time before my condition and its repercussions took over my life and I was able to walk my dog most every day without fail - sprinkle or shine. He loved it. I knew because of the swing of his tail and the big sloppy grin on his face. I miss that big slopping grin. During our walks we passed beautiful  Dutch-colonial and Craftsman-style bungalows in sweet traditional tones with carefully manicured lawns and gardens. It was much like walking through Sunset magazine. After moving most of my childhood, I could not believe I had landed in such a serene, often tranquil place. I wanted to pinch myself. Yet like any place, the new began to wear off after several years of living there. Of course, that's another story. I always did enjoy the walks.  I could always clear my head or come up with ideas for stories. I fondly look back on those dog + mom moments with fondness; it was one of my favorite activities while living in Moscow. 

                                                                           
On a stroll up Sixth St. one evening, Bridger was busy sniffing flowers and grass along the sidewalk and I was daydreaming. Nearly home, I started to think about the rest of the evening and what needed to be done before work the next day. We passed the neighbor's house. 
I stopped.
Immediately. 
Bridger slowed in his tracks, turned around to meet me.
I had never seen THAT tree before.

 I lived next door and never noticed...

Why my sudden interest in trees? Well, for those of you that don't know I do like trees. I usually don't make my dog do an acrobat in order for me to see one. Poor Bridger. He recovered fine.

This tree its limbs arched into the sky...

The trunk spotted with large, round...  Should I say, growths?

I stared at the tree from different angles.

I realized THAT VERY TREE - I don't recall the species now - was significant. The tiny round marks and the big ones scattered the length of the trunk. I knew that it looked like me on the inside. My body in pain, riddled with ... Should I say it, scars? 

A tree you pass by every day is just a tree. If you are to closely examine what a tree has and the life a tree has, even the smallest thing can withstand a curiosity, and you can examine whole worlds. --William Shatner


Tree Wisdom
Scars. I used to worry about scars. Now I concern myself with what is akin to roots of a tree: day-to-day life. It's not easy. My condition, Schwannomatosis, is a genetic malfunction of sorts. It is a rare form of Neurofibromatosis (NF) that has only recently been recognized and affects around 1:40,000 individuals. The first symptom is almost always pain, which can occur in any part of the body. It often exceeds any neurological problems. I would eventually like to kick the pain pill regime all together. I struggle with daily life now bogged down by medications yet I need something to keep the nasty pain at bay.

The sun started to set in the small north Idaho town creating a softer lens on the landscape. Thanks to the fading sun the tree had a shadow that led into the crisp mowed lawn and white gravel area where my neighbor parks her car.
I stared at the tree a moment longer. 
It was then Bridger gave me a tug. 
Time to move on. 
It was like he was saying:
"Let's go already! Enough with the tree!" 
Fine.
"Let's go!" 
He put it in gear and off we went around the corner into our own yard, full of smells. I didn't see the tree from this vantage point. 
"Huh," I thought.
Bridger looked up, a keen ear to my voice.
"Good boy," I pet him on the head. A stinging pain ruptures my back, spills down my right leg.
"Owwww! Let's go in! Gotta go in!"
I am bent over yet manage to raise up.
Bridger quickly leads the way to the door, a perfect gentleman.

                                                                                          
Some time later I find out that what I saw on the tree is called a burl. It is a "disfigured, bulbous growth" that occurs naturally in nearly every kind of tree, according to 
Premiere Tree Services (PTS).

PTS web site:

 "Burls are formed when the cells that make up new bud growth begin to deviate, dividing in many different directions and forming a large bump instead of a branch or root. The grain spirals, twists, and knots, as opposed to normal growth."




"The underlying cause of this benign condition is unknown: despite the popularity and high value of this gorgeous wood, nobody has been able to induce or prevent burl development."

"Attempting to remove a burl growth will most likely kill even the healthiest tree. Unless the burl reaches an incredible size or starts to deteriorate, your tree will most likely live a normal life."

'Own corner of nature'
I still think about seeing that tree. A lot, in fact. For some reason it had a profound effect on me. I guess because I am such a visual person and that one tree put my condition in perspective. I could see what I looked like without the MRI scans, CAT scans, white coats, and gurneys in an environment I felt at ease -- my 'hood. I felt a mirror before me there in my own corner of nature albeit odd and self-reflective yet realistically most of my camping trips in the woods are like that anyway. Ha!

I don't want you to think I've gone too crazy. It's just that when I saw that tree with its - let's say marks - I felt a kindred spirit of sorts. Crazy again, I know. I can't help it. It happened. It was my crazy me-moment. We ALL have 'em.* I could see my life in nature. It seems that these trees lead "normal lives*" - for the most part. One web site painted a much bleaker picture for tree burls. 

I want the normal, good life for me... and the trees. 

As for my readers, here's the takeaway: 

It's not a burl finder or a free photo of me and the tree. You can "whew!" that one! But listen... Let nature or just life in general teach you a little something. Don't be afraid to stop a moment and just look. Take in a sunset, a tree, or a flower. Watch your children play outside. Don't film it, Facebook it, or Instagram it. Watch it. It's invigorating. Look for the out-of-ordinary, the unusual, the plain and simple and everything in between. 

Step back once and awhile and see what happens. 

Magic of life. 

It makes you get bumps all over... Goose bumps! 

What's not to love about that?


 ©The Healing Redhead













*Pronunciation: Ma's-co
*Patients  develop multiple schwannomas on cranial, spinal and peripheral nerves--but they do not develop vestibular tumors and do not go deaf. They also do not develop any other kinds of tumors such as meningiomas, ependymomas or astrocytomas. Patients also do not have learning disabilities.
*I'm not talking Reese Witherspoon crazy.
*Their words, not mine. 


Photos: Microsoft clip art; Wikipedia (burl)

Wednesday, March 27, 2013

Holy Cow, It's Easter! A Tribute to My Late Aunt Susie



Easter is always a time of year I think of my late aunt Susie. I remember one Easter in particular as a youngster in Arlington, TX, in particular, and my mom and I were spending time with my dad's youngest sister. I recall doing the age-old holiday egg dying at her small kitchen table as dogs scattered past, a feature of my life in my 20s. Minus the egg dunking. My small kitchen with green cabinets much like the ones you see on the Parenthood set & my dogs running about or napping one on top of the other keeping warm in the Idaho spring weather, the snow doing its best to melt before May. I kept a pot belly stove warm nearby but that wasn't enough for a pair of labs, one chocolate and one "vanilla," as I liked to say. Sierra seemed to enjoy the snuggle a tad more than my man, Bridger. 

Back to Texas and my aunt Susie who was beloved by the family for her personality, quirkiness, charm, and downright sweet nature. When I was little, I remember Susie at every holiday occasion in Arlington, especially Christmas holidays. She would be the first with a margarita drink in her hand
and all the other adults quickly behind. A lot of her high school friends stopped by to see her on Christmas Eves at her childhood home, a modest three-bedroom that - during the growing up years - housed seven children and two parents. When I was old enough to grasp the idea, I still could not possibly believe that the girls were in the front room, the boys in the middle, and the parents in the back in that small of a space! Every time I stayed there after my years waiting for Santa Claus I shook my head in wonder, How on earth did Daddy, Susie, and the rest of his siblings do THAT? Not to mention there was only one bathroom for five girls and two boys! That's a lot of patience. 

Susie's friends were everyone's friends. They hugged me every time they came by, exchanged hellos with my parents, and my other aunts and uncles. Susie always seemed to have a smile. Grinning ear to ear, she sang her kind of carols for the December holiday. These didn't involve Rudolph, Santa, or a sleigh of packages. It was more like a great big sleigh of songs from Texas troubadours Guy Clark & Jerry Jeff Walker.



The family sang Texas Cookin', Up Against The Wall Redneck Mother, and Pissin' in the Wind... YEAH, there was no Silent Night, for sure. And it was all off key. {Wink!} Poor neighbors. But everyone had fun. I was probably put to sleep before the real fun started. I so desperately wanted to be an adult back then and experience the shrill laughter, the stories, and more. I will never forget my two aunts, Susie and Nancy, kicking up their heels with drinks in their hands; I don't know if their eyes or grins were wider. 

An even quirkier side of Susie was that she loved to collect: cows. Not out in the field exactly... Memorabilia.  Cow ANYTHING! MOO-OVER, it's for Susie. This gal, my aunt, had cow kitchen towels, cow coffee mugs, a cow nightshirt,funny cow slippers,a cow refrigerator magnet collection, and the list goes on..
.

For Christmas one year, I found the perfect gift: a 12 oz. cream-colored mug with large black splotches all over it.  Of course, she loved it. I don't think I ever asked her why she loved cows so much. I wished I did. 

You know, it's funny looking back I don't remember actually talking a lot to Susie come to think of it. It was probably small chats here and there. I spent time watching Susie interact with family and friends. As an impressionable elementary school student, I wanted to soak up who she was as a person as best I could. Her traits were so likable. I wanted to be just like her. Little did I know then, we shared a trait already, a genetic one. 

On a Good Friday, one I will never forget, Mom, Susie and I went to The Stations of the Cross at a Catholic Church in North Texas.
Easter memories
For those of you not familiar, Stations of the Cross follow the story of Jesus carrying the cross to his moment of crucifixion. There are places around the church, plaques or artistic reliefs, that document each moment of Jesus' journey.*

Susie had to endure her own fateful journey, a battle of disease, of surgery, of personal struggle, of saying good-bye. I wasn't there but I am told she was a fighter until the very end. It doesn't surprise me at all.

When things get bad in my own chronic pain realm, I try to think of her bright smile, laughter, and great view of life. The genetic trait I mentioned earlier was Neurofibromatosis or NF1. It was a complicated road of surgeries, hope, the latests drugs, more hope, but in the end it was not to be. It more than cringes me to think she couldn't be with me today.

I have Neurofibromatosis or NF3, Schwannomatosis.* She was in her late 20s when cancer claimed her life. Yet, it didn't claim her spirit, memory, or sparkling attitude. I am still *always* recalling that trio of magnificent emblems, if you will. These will cradle me to my lasting day on this earth. 

What are your emblems? Is there someone in your life you hold dear? What are their sparkling qualities that you see? Write 'em down and let them know. What are lessons you have learned by way of them regarding  LIFE? 

Even though I didn't know her a long time, the time I did have with her was rich, full of lessons. Here's just a few I learned:
1) Always have another margarita! 
2) Party with friends and family! She loved being with both!
3) Go for the romance! She went to Kalamazoo to be with her boyfriend, Jerry. They later married and I was the flower girl! 
4) Animals are a great gift! Treat them with kindness, care, and cuddles. She always had 'em around -- all sizes! 
5) Music can lift up your mood! For Susie, Texas folk music could cure about anything! Here's Guy Clark's Texas Cookin'  for you to try!
6) Start a collection. Anything. Ladybugs.Antiques. I collected frogs at one point. Not real ones. Well, there were the handful of aquatic ones in the fish tank. Another time. Next. It tells something about your personality, maybe too much! Giggle. 
7) Sweet w/ a tad of spice - I think having a sweeter disposition can get you farther in this world than the harsh, hard-as-nails approach. Although, sometimes you do have to speak your mind. Susie did on occasion. A gal has to do what a gal has to do. 
8) Keep up with friends! Get an address book at the dollar store to keep tabs on all your favorite people. Your precious electronic phone needs a backup anyway. Put phone numbers, birthdays, addresses, and names of friends' and family's little ones. Your set. Then, have a margarita! Celebrate! Job well done.
9) Simple: Enjoy life. We are not here forever. Hug that husband. Remember why you went on the first date with him. Cuddle those kids. Call your parents. Sit back and take a deep breath. Take the dog for a walk. Play with the kitten. Exercise. Hear yourself breath. Too much? Meditation. Read a good book.Sit on the back porch and listen to spring... if it's arrived yet! Just ENJOY!

 Ahhh... Something smells good. It's LIFE! 
Or a slice of homemade pie w/ a fresh cup* of coffee

 ©The Healing Redhead






*The photo is provided by Facebook pal/high school friend Nathan Wolf. 
*The tradition as chapel devotion began with St. Francis of Assisi and extended throughout the Roman Catholic Church in the medieval period. It is observed in Lutheranism and within the Anglo-Catholic wing of Anglicanism. The Stations of the Cross may be done at any time, but is most commonly done during the Season of Lent, especially on Good Friday and on Friday evenings during Lent.
*Learn more about Schwannomatosis here
*The cup may or may not be cream and have black spots on it! {wink}