[Building a Life & Wooden Track]

Building wooden train track with your grandkids is a life lesson. Start with the Round House, home, noticing a choice of multiple directions, arbitrarily select one direction because it feels right; work your way up to a Bridge while digging around for a tiny little Funny Piece, otherwise adapt; cross the bridge without accidentally collapsing the deck; choose the right Ding Ding, a kid’s pleasure; circle around and back and across and back until a Switch seems right; work you way back to the Round House but not before passing through the Maintenance and Repair Shop with a quick visit to the Wash House; pause and breath while planning how to finish off the other Spurs knowing that at least one track still needs to work its way back to the Round House – it’s the Switch you thought was needed earlier; seriously consider adding in a few Stops to make your job easier; listen to the kids making hay about your design choices and offering sage advice on how wooden track should be laid while deconstructing your best designs. Lesson learned! We get inspiration where we can and it’s the most unexpected and littlest things in life that provide the greatest insights and pleasures. No matter the design, chosen pathways, obstacles, adjustments or the critiques, life has a funny way of working out and brining you home, provided you keep your head down, work smart, and listen to the innocents among us who understand there is always a creatively simple solution which is usually different from the one we conceived or chose.

William Anton Lee
2013, May 19
[Building a Life & Wooden Track]

Let Trust Survive Judgment

My very wise father, William Harold Lee, “Billy Boy” to his cousins, left us kids with several cognitive jewels. I’m reminded of one today.

“Don’t steal … and heaven forbid if you lie about it.”

Dad taught us that we all are inclined to “do” or to “not do” things. When called to face these decisions, whether by conscience or community, it’s always best to give the unvarnished truth without nuance leaving no small details out. Yup, no gray area in his definition of truth.

Leaving loose ends to fester in an attempt to protect caliber of judgement sacrifices integrity. It’s far better that we learn from mistakes in judgement, no matter how public or embarrassing, than lose trust.

The above is my takeaway, a few words longer than Dad’s (my intrinsic tendency).


William Anton Lee
Let Trust Survive Judgment
Second Draft
2013, May 10

… Take Two: Your guy is a bigger Crook than mine

Your Guy is Bigger Crook than Mine

Imagine. Politicians playing politics? Word smiths word smithing? Spokespersons speaking. Commentators commenting? Spies spying? Diplomats sugar coating?

None of these require me to look the other way when I see or hear actions which betray the public trust, serve the self serving, and/or provide cover for incompetency, or worse, deceit.

I’m not Party Republican or Democratic. Hypocrisy isn’t red or blue, it’s an unfortunate tactic of the body politic. I find no satisfaction when the pot points out the kettle is black. Rather, I prefer to hear about a common set of ethics. I prefer to hear that our public servants serve truth, serve integrity, serve all the people, not those who seek re-election or saving face.

When the predicate is salvaging one Party over the other because with only two one must reign supreme over the more devious or forlorn, then we the citizens surely lose the moral and proper underpinnings of a decent, trustworthy national community.

Cause of Sturge-Weber Syndrome is Discovered – Mark this Day in History

K-T SYNDROME FAMILY AND FRIENDS

IMPORTANT ANNOUNCEMENT

GREAT NEWS

The cause of Sturge-Weber Syndrome, a sister diagnosis to K-T Syndrome, has been identified. Read the enclosed. There are also direct references to this discovery also explaining Port Wine Stains (all too often called birthmarks). We are extremely close to this and this discovery means we are probably not that far behind.

http://healthfinder.gov/News/Article.aspx?id=676242

From the Institute itself:

http://sturgeweber.kennedykrieger.org/news.jsp

[Be Not Alone]

Whether fear, trepidation, passion or affection, all play for our heart hoping to gather our soul and distract the mind. Some of these we favor as sunlight, others we banish as darkness. When called their are Angels in our midst who walk with us through darkness, just as their are Shepherds who guide us by daybreak. Sing through the night – dance through the day – and should the Moon rest and the Sun blind, reach for the subtle touch of angels and shepherds.

Caution! Hearts are at play with little understanding of emotion or endeavor. Gathered souls! Distracted minds! Flittering Hearts! These matter much and stand loneliness up. Listen carefully for sweet music calling us to sing and dance. Free your soul! Settle your mind! Guard against blindness causing angels and shepherds to pass-by after momentarily standing before us. Let not doubt, rationality, willful silence or stubborn blindness keep you from affection.

Be not alone, for we are not alone!


William Anton Lee
2013, May 6
[Be Not Alone]
First Draft

K-T Syndrome a Shared Road Traveled

Many of my younger K-T companions wonder what their future brings. It brings you hope. It brings you love. It brings you challenges. It brings you lovely people who gladly travel with you through remarkable journeys. It brings you friends for life. Bear with me as I explain. Dawne Lee, this remarkable lady, has stood by my side since we met. Her K-T story like most life stories is best told in person, but then to wait to do so would mean you, my extended family, wouldn’t hear it. Her K-T story is a shared story.

I was 18, Dawne Leslie Wood 17, when we met. We married at 19 and 18, at what most think of as an early age, and we have unwittingly traveled the K-T road together ever since. While a completely distinct story in and of itself, this journey was quite unexpected as I was certain I would not pursue marriage until after I was 30 years old. In no way is this a patent endorsement of early marriage, although I wouldn’t change one thing about my youth, our storybook meeting, or our decision to marry, not only early in life, but early in our relationship.

Every life has its rhythm and the music it generates is as unique as any song written across generations. There are moments when we look to favorite songs and wonder is this my story. Maybe we take inspiration and set about to travel a like journey. Other times we sense others are walking our road. In the end, we write our own story and revel in how great it is that were it a musical score it surely would be a different, vibrant song; and beautifully ours. With that in mind , this is only one K- T story among many and is by any account also only one love story.

Today, it is impossible to separate my feelings from Dawne’s. It is impossible to separate my joy and pain from hers. I make no secret that I’m 58 years old. The math is simple, that’s 40 years of listening to laughs, but yes also moans and groans. That’s 39 years doing so as we attempt to sleep at night. That’s hours and hours of leg massages hoping these will bring restive sleep, so many times without a thank you or even a glancing smile of gratitude because sleep came to me before Dawne finished.

For just over 20 years, the early years, Dawne dealt with my random yet constant periods of bed rest to cure stasis ulcers, never to forget her unflinching and quiet care for our children while having this big kid down for the count. After about a year of marriage Dawne worked the next 4 years while I went to college. She provided me with tons of encouragement that many seasoned marriages struggle with – we were newlyweds and she conspired with my father to move into his home and insist that I attend school without the distraction of work. Dawne knew me better than myself and she laid the foundation that forever is the confidence I rely on today. There is virtually nothing I won’t try to learn because Dawne’s faith and support tore down a barrier built by my educators from K through 12. Yet again, another story.

The first 20 years I speak to here were magical, yet it is the next 20 years that shine an ever brighter light on unwavering and unconditional love. Dawne’s first 20 with me were a mystery tour. My medical problems were constant, but from causes unknown. When the doctor called her in as his moral support – she came without hesitation. Diagnosis Permanent Disability, cause unknown, life prescription 20 hours recumbent and 4 hours ambulatory were his words. Without blinking an eye Dawne turned to me and said, “You did your 20 years, now it’s my turn.” Without breaking confidences I must say Dawne misses important considerations to this day when she discounts these earlier years and her heroic work to once again provide encouragement and support at a time in my life when I needed it.

As the story goes, we’re in the first 5 years of our second 20 and the diagnosis changes from cause unknown to Klippel-Trenaunay Syndrome. The prescription changes for a substantial duration to remain recumbent the entire day except for potty breaks. You get the picture. Our children are now middle school age, active beyond active. Dawne is re-entering the job market to assume the primary bread winner role. Me, I’m knocked out on pain medications, unable to walk the staircase to our 2nd story bedroom, and fearful I will be unable to walk at all. The world is on Dawne’s shoulders. There is so much that needs saying, but I leave it here. Dawne’s own medical story is replete with struggles that send many people to the sidelines of life. Yet, it is my pain, my handicaps she carries and resolves.

These last 20 years now have reached another milestone. You might say we are in what is inevitably the last 20 years. Stop it … I’m not staring down death. Or, at least I pray not. It’s just that life from age 60 to 80 writes new chapters that are distinctive. I reflect more. I listen to young folks more. I find myself reaching back and checking my pace of life and times missed to say thank you to so many people who have made my life interesting. Mostly, I jealously guard my relationship with my wife, Dawne, and hope that she knows just how much she is me and I her.

You meet Dawne regularly here. She befriends my friends, you. She tracks birthdays. Her heartfelt compassion extends to you and your families. She marvels at our friendships and unjealously supports our time together. If ever the words “… and the two shall become one” were not figurative, surely these describe our relationship. I noted earlier, it is impossible looking into Dawne’s eyes and not see my pain, to not see my journey because it is hers. Caitlin Marsh, a K-T Companion, so eloquently described a her mother’s love for daughter – a love affair by virtual of motherhood. Beautiful! I add here a wife’s love for husband – a love affair by virtue of choice. I proffer that motherhood and marriage are anchored in one of life’s bedrocks – a women’s passionate, unassuming gift to those she treasures more than her own life.

Thank you Dawne.

K-T Syndrome: A Bowl of Spaghetti

One of the most revealing doctor presentations at several of our Rochester Bi-annual K-T Meetings was offered by Dr. Burroughs. She is an Intervention Radiologist who is in many respects a pioneer in the treatment of K-T. Her work allowed us to see the “unseeable” and introduced techniques that carefully treat what inexperienced doctors seem to guess at. I have no way of knowing whether her work is considered medical legacy now, but it is very satisfying to see other doctors speaking and showing their work which parallels the Doctors. What is this magic come to life?

Looking at our affected areas with the naked eye we see one or many of these things: mosaic colored skin; veins popping out of the skin (varicose veins); fatter/longer legs, arms and/or trunks (hypertrophy); lymphatic blisters (blebs); spider veins; some skinnier/shorter legs (hypotrophy); open skin sores (stasis ulcers); and body parts that develop erratically, if at all. A big part of our human makeup is to focus in on what we see and allow this to become our focus, our reality. The Doctor permanently changed this natural bias for me. Let me explain.

Dr. Burroughs showed us pictures of the peripheral and deep veins of K-T patients. These weren’t perfect color Kodak moments, but even in black and white these revealed why we suffer so and why surgical procedures that target a single vein or even a couple of veins are so likely to fail overtime. Our Circulatory System is nothing like our parents or the pictures we imagine based on high school biology class.

That wonderful picture we all saw in high school biology that shows our arteries and veins looking like a perfect tree with sensible limbs and branches just isn’t us. Think more like a bowl of sticky spaghetti which begs to come out in clumps and not one noodle at a time. Imagine now that when an inexperienced doctor surgically removes or closes one of those irregular noodles – another couple of dozen which were “protected” by that bad noodle now become the primary pathway after surgery. This stark reality means that we see “new” K-T veins when in fact these malformed veins have been there all along.

I can’t speak often enough or loud enough. Please ask your doctor how many K-T operations they have done and what the results were before agreeing to going under the knife. It’s not even a matter of now many they have seen. Ask them if they have an Intervention Radiologist on their team and if this doctor will be the first to examine and operate. Ask them to show you those wonderful black and white pictures that only Radiologists can produce before agreeing to medical intervention. K-T Syndrome is a BIG PICTURE disorder and underestimating its pervasiveness is unwise.

What we see with the naked eye is by far a very simple representation of our actual disorder. Fight like crazy to get a Case Manager from your insurance company right now because our syndrome is not something to be handled like the common cold or even a heart condition. Our medical journey is lifelong and demands an early road map which technology provides now, albeit very expensively.

I highly encourage you all to fight like crazy to get to experienced K-T Surgeons and Intervention Radiologists on your approved medical team. Pick up the phone and call the Mayo Clinic in Rochester, the Boston Children’s Hospital, and/or the Cincinnati Children’s Hospital and ask for every possible business solution to get their K-T team of doctors on your team. I’m betting that if being in their facility isn’t practical, they will seriously consider consulting. If you have had similar experiences to those I express here, that is exposure to multidisciplinary teams with experience in the advanced treatment of K-T Syndrome, then please post here and brag about that team and speak to their techniques.

Our community is at critical mass now. We can help each other by telling our stories no matter how routine or extraordinary. As always, thank you to this amazing extended family. The strength and future of K-T treatment is largely due to this community, its pioneers and its contemporary participants, advocates, and medical professionals.