As if there was a plan

1997, age 17. A flash. A poem. My parents -as always- respond with disheartening cynicism. My language teacher responds by sharing a poem he wrote at my age. His tone was spleen and Weltschmerz, where mine was (his words) ‘contemporary cynicism’. Sign o’ the times? My teacher points out that writing takes hard work, not just flashes. I never truly realised that until in 2013, age 43, I created my book “Scrum – A Pocket Guide”. Who would have guessed that in 2017 my book would be available in 3 languages?

An earlier pivotal moment was professionally moving to the Netherlands by the end of 2010. It was the start of a fascinating time supporting many people and organisations in growing their agility through Scrum.

2012. Dots got connected. The sudden realization that it took time to become what I didn’t know I could be. As a happy outsider. To be happy as an outsider too. Good at searching, not at finding; at travelling, not at arriving. Those small contradictions of life, a force rather than a noose. Being a total introvert, a hermit; yet, travelling the world for people and their way of Scrum. A vocation. Some unspeakable need to… ?

That same outsider in me sees the changes in my professional sphere since abandoning my spot of perceived importance in 2016. It affects me to the extent that it affects interactions and collaboration. A sense of bemusement hits me every time I realize how people stopped caring, ceased sharing ideas. A sense of bemusement when individuals compete with no other aim than personal fame or fortune, denying even the mere possibility of any greater, shared good. Displaying a cynicism that rules not my world. Not my vocation. Scrum gave me much. I will keep sharing back.

I observe the effects of the growth, even dominance, of Scrum. Scrum became a commercial model for money making purposes. Or Scrum is just a job, a career. Or the much hoped-for doorway to that personal fame or fortune. The use of Scrum to create better products while humanising the workplace, with people at the heart of it all, is a vocation that not many share.

If cynicism ruled my world, I should have started my own elaborate licensing scheme by now. Go down the worn-out path that many tread, at best paved with good intentions, but blind for the toxic side-effects. I should have re-issued, re-packaged, re-evaluated existing ideas, concepts and theories, added an extra rule and a tacky badge. Run it past the magical, buzzword-combining hype-creator. Act like I am the King of the sea. And the land. And the air. Denying even the mere possibility of any greater, shared good. Just imagine.

New! Unique! Exclusive! Copyrighted! Trademarked! Licensed!

Rather… the pathfinder way. As in our personal lives. If cynicism ruled our world, the doors of serendipity would inevitably remain closed. We would not be open to explore and discover, but be fretting our days away. Now we find ourselves bothered with, but not jammed, over missed absences and unwanted presences. We ended stressing ourselves to death with 2 day jobs (and survived the loss of income). We bought a house we didn’t know we needed (although better reasons are imaginable why we bought it). We live the art of the possible life. Not all is regardless some less expected ways of life, some is because of it. Mind: easy it is not.

We live, bounce, struggle, fight, survive, suffer, prosper, thrive, enjoy, recover, stumble more. At times we look back. With amazement. We see the events and what connects them. The achievements once unimaginable. The signs marking beginnings and endings. Growing a beard. We see the choices we made. And we smile. It looks as if there was a plan. But we walk backwards. We reel the string laid in this labyrinth. We grow younger every year. We have much to figure out.

Anger can fuel you. Dissent can too. Don’t let it turn into an endstate, a dead-stop of cynicism as your final destination. Invoke fusion to happen, beyond right, beyond wrong. Open seas rise in front of you all the time. You can set sail. Or stay at home.

Warm regards
Gunther
A failing clown. No joker.

Traveling

(moving houses, gardening, and new dimensions)

Early 2001. I decide to resign. My wife only asks me to pursue an occupation that keeps me challenged for more than two years. A reasonable request. After all, since graduating in 1992 I worked less than one year as a software engineer (on VAX), less than three years as a hardware and software engineer (C++ and micro-assembler), and we had a bookshop for about three years.

MagnoliaAnd, well, my two years with this start-up e-commerce were pretty turbulent too. An unaspired climb to ‘senior manager’ (layered titles are part of working with former McKinsey people). Bribed into a stock option plan (brilliantly devalued through the e-com bubble burst, draining the very little savings we had made since our bookshop days). Franticly favoring people over structures. Fourteen hours working days (commuting not included). IT and back-office manager (titles being what they are). In the end, endless disagreements with the manager-founders. Over which I quit (despite my emotional investments). To be pulled back by the investors, and end up as a dehumanized puppet in strategic schemes. Once our company survival plan takes shape, I leave anyway, disgusted by the offer of IT Directorship.

I enter the unknown territory of consulting to spend six years at one company (a world record, truly), only to discover true joy again (almost at the level of the bookshop) through eXtreme Programming and Scrum in 2003. I grow my small 10-person company within the company, a chapter ending with a top-down inspired mutiny early 2007. Before the mutineers are struck down by depressions and other forms of nervous breakdowns I had set sail again. Recover, move on.

After two adventures of less than three years I leave consulting in 2013. I had just been upgraded to ‘principal consultant’ (titles, again, not work). I had put my heart, soul and passion in Scrum at these companies. It dropped dead. I felt highly miserable over that. Until people pointed out how it had influenced many, many individuals, and inspired a few enterprises. Just not the consulting company’s structures.

Having intensely collaborated for some years, mostly as a Professional Scrum Trainer, I move to the home of Scrum to join Scrum.org and partner with Ken Schwaber in 2013.

Spring 2015. These past two years Scrum has been the focal point of whatever it is I do. I even wrote a book on it, which seems to be well received by those who read it. I realize I have traveled. Happy not getting anywhere. Traveling is what we do, still.

Cherry BlossomOur horizon expanded from the smallest thinkable village in Belgium to Belgium itself, to the Netherlands and Europe, to working with people around the planet. An enlightening and humbling journey. Full of things that take time. Beauty. Growing flowers. Becoming what I didn’t know I wanted to be. Unlearning. Mastery.

I remain in doubt. A constant state. I am good at searching. I am terrible at finding. But gradually I grow less ashamed.

My family is my stability. We lost people (some dear, some not). We gained liberty. We have three kids (two have disabilities). We cope. We prosper. We bought a house we didn’t know we wanted. We are close. We travel. Too.

I have found I have personal values. They have served me well on my traveling. They helped me decide to resign. They help me look beyond a career, beyond scoring off other people, beyond lies, beyond backstabbing.

I am writing this to share. There is nothing but the world to share it with. I am cleaning the house. I am writing this to find out. Maybe I will stop reading mails for a year and 3 days. I am good at trying. I won’t succeed. That’s fine. That is beauty. I am grateful. I discover. Serendipity.

Music. Reboot.

The house we didn’t know we wanted (the surprise that 2014 brought)

After the silent resurrection of 2010-2011 (with the birth of our daughter and my re-discovery of the path of Scrum) 2012 was a pivotal year. 2013 subsequently was pretty explosive in growth and global expansion of our views and lives. The first half of it, 2014 was turning out what we were hoping for, a year to harvest, a year to reap some fruits of those preceding years. But in June things changed. Unexpectedly.

A couple of years ago my wife had clearly hinted at spending our yearly holidays in the US in 2014. It had something to do with her reaching an unspeakable age in 2014. Part of the preparation for that trip was ordering a wheel chair for our son, who has Duchenne Muscular Dystrophy, to help us move faster through New York City.

IMG_1377The wheel chair made us realize that our house in the future would require more adaptations than we had already made for our son. We didn’t like that. What manifested suddenly was a partial elucidation on our overall feeling of being locked in. It explained how we made many considerations over the past years on our house, plans that were never made real. That was only re-inforced by looking beyond today and beyond tomorrow, into the future where both our sons, one with DMD and the other with Down Syndrome, might just stay at home always given their disabilities.

So, suddenly we found ourselves in a position that we were looking for a new house, something that we had never before even considered or were aware of. It was unexpected. Not unpleasant. We felt the urgency.

And then urgency was followed by opportunity. A rare combination, and we moved fast.

IMG_1794We discovered a beautiful house, built in 1975, having the amount of ground floor we were looking for (thinking of our son’s immobility), the space we were looking for (thinking of the long-term future). It had character and style, a rural look that we immediately fell in love with. It was not too far from where we lived. But… way beyond our budget. Or so we assumed. We went to visit the house, discovered it was more of a project than a house, but our minds were stuck on it. We discovered that rate of interests are historically low (a ‘positive’ effect of the banking crisis), and that the sellers of the house were willing to give in on their asking price. The smell of opportunity.

We decided to jump. The day before we took off for the States we signed all papers at the bank and the contract was finalized! We had a wonderful holiday in the US, and our fall was spent dreaming of our new house, and obtaining the keys on October 7th.

IMG_1914We subsequently set a goal, i.e. to spend Christmas in our new house. It was not a realistic goal, looking back. It required some miracles, like removing old carpets, scraping off old wall paper, getting craftsmen in to sandblast and clean old wooden stairs and floors, to check the plumbing, to order and get a new stone floor laid, to assure some base electrical installations, to pack and arrange the moving, to start selling our old house, and much more. IMG_2369But we made it. On Monday December 22nd we moved over all large furniture and spent our first night in our new, little cottage.
During the first week we only lost power 3 times and some other minor outages, problems that were all fixed at the root and would not have been discovered so quickly if we hadn’t just moved in like we did.

Now, the rest of our years can be spent on further renovating, redecorating, refurbishing, expanding, and restoring all sorts of facilities, hopes and dreams. It’s good to be fully aware of the fact that nothing ever is complete. It explains our restlessness. I am glad that it got restated in all of its beauty in our hearts and minds by getting a house that 6 months ago we didn’t know we wanted.

IMG_1975

Thursday April 17

April 17 2014 was a Thursday. It brought back memories of another April 17 that was also a Thursday, i.e. in 1986.

The day was starting like every normal school day of a 16 year old high school student. I was riding to school by bike, a distance of about 12.5 mi, together with a couple of friends that joined me underway. However, that specific April 17 turned out a bit different. Me and my friends wanted to cross a certain road, as we always did, not to far after the road takes a turn. As I started crossing the road however a car came through the turn, which caused me to freeze. The car crashed full into me. My head smashed against the windshield and I got dragged along for over 18 yards hanging by my shoulder on the outside mirror, until the car came to a standstill.

Above all, it must have been terrible for my friends, seeing this happen right in front of them. I can only copy what I was told afterwards, as I have no memories of the event. I don’t even remember getting up in the morning, although I do remember the evening before. My brain only re-started generating memories 2 weeks later.

An ambulance takes me to a local hospital, where I am immediately transferred to a more specialized hospital with special transport. When my parents arrive, it is made clear that there is not much hope. I am in intensive care attached to lots of equipment, tubes and wires. I have no idea of what is going on as I am in a coma because of the pressure my skull has caused on my brains when hitting the windshield.

24 Hours later, Friday morning. Just before the surgeons want to relieve the pressure in my head by drilling my skull, I open my eyes shortly. The drilling is cancelled. 2 Weeks in coma follow, and in total 6 weeks in hospital. My collar-bone is broken, but that is nothing compared to the fact that my left leg has a dual, open fracture. A metal plate is attached to my bone to keep it together.

School is over. The advantage is that I can completely enjoy the soccer World Championship of 1986 in Mexico (night games included), where the Belgian national team performed so well. The problem is however that I am not entitled to pass on to the next grade. Up to today I am grateful that my teachers accomplished with the ministry of education that they were allowed to take that decision. As from September I went back to school. By bike. To the next grade. Walking was no problem, but running was impossible until the metal plate was removed from my leg one year later.

Some will probably state that this day, April 17 1986, and my bike accident, marks the start of my insanity. I officially deny. I was already pretty crazy before my accident. I am born an anarchist. More than 28 years after the accident I am more than ever convinced of this. I did have much luck, as it seems that chances to survive undamaged were non-existent.

 

Deflazacort. Usually a blessing, sometimes not?

Every child is unique. Every child is entitled to individuality and to being treated as an individual; in its development, happiness and… medical care.

In 2007 it was found that our oldest son, 6 years old by then, has Duchenne* Muscular Dystrophy (DMD). Shortly after that, he started taking on a daily base Calcort, tablets containing Deflazacort, a corticosteroid.

Our son now is 12 years old, and together with him we recently decided to stop taking these pills.

Although this is an individual decision that only applies to him and his specific situation, one that can’t be generalized toward other children, we think it is worthwhile sharing why we did it.

The end of his primary school is coming up. He prepares to make the transition to college. He will go to a ‘normal’ institute, not one specific for disabled people, because (1) his mobility is really good, (2) Duchenne has no cognitive impact, and (3) he wants to show that children with Duchenne can go to a ‘normal’ school. Fortunately we have found one not too far away who is willing to make this happen with us.

However, despite his good mobility, his self-esteem isn’t too great,

  1. He is very worried over his stature. Our son is very short and rather thick-set, and his face looks quite swollen.
  2. He often shows highly kinetic behavior; although often beyond his control, it seems. He doesn’t sleep enough in our view, has problems focusing and often just has plainly too much energy.
  3. Physically it is clear that his puberty is delayed.

Accidentally our attention was drawn to the side effect that Calcort has on delaying puberty. Intrigued as we were, we started checking other side effects again, and found that all findings that we have over our son can be related to the use of Deflazacort or alike products: the weight, behavioral problems (it looks like ADHD, but it isn’t it), swollen appearance (body fluids being held up), inhibited growth, delayed puberty. We retrieved information of specialists and hospitals all warning for such effects, and the absolute necessity to proactively follow up on them.

Our research revealed other interesting concerns too:

  • The advantages of Deflazacort are an increased life expectation, less risk of Scoliosis and improved functioning of heart and lungs; however often with indications like ‘possibly’, ‘probably’ and ‘suspected’.
  • Our son takes in 18 mg per day. According to his body mass he should have 40 mg, and there is an upper limit of 36 mg. Anyhow, it is a clear under-dose. In the past 6 years his dosage has never been increased. But, indeed, most studies suspect also with lower dozes a positive effect.
  • Our son performs very well motorically, but also his bone density (Deflazacort has a risk of bone brittleness) and heart and lungs are in perfect shape, can’t be distinguished from another child.

So, we decided to stop taking Calcort. We are gradually reducing the daily dose so the adrenal gland starts producing the Cortisol hormone again. That was not an easy decision, and particularly emotional. It’s about our son’s life and future after all. Although we have taken this decision autonomously, we are quite comforted by all the information we have gathered. And, after all, every decision is temporary. Like the decision, 6 years ago, to start with Calcort.  O U R   D E C I S I O N.

We have decided not to pursue the options, presented in some studies, to change the regime or the time of day of administration (specifically advised for the behavioral problems). And our decision, when communicated to the doctor and team guiding us, was not protested by them anyhow. Neither did we get much information or support. Fortunately we were able to have a good talk with our GP.

This is not the first time that we take up our responsibility as parents independently, driven by a holistic view on the well-being of our son, looking at his individual situation (not comparing to others, nor speaking on the behalf of other children). We did so and decided to stop taking these steroids.

A last thought. Deflazacort is the only medical product that is known to have a possible positive effect on the progression of DMD. It is therefore not an obligation, to administer it from some sort of therapeutic stubborness, not taking other aspects of life and life’s quality into account.

Every child is unique. Every child is entitled to individuality and to be treated as an individual. Children suffering from Duchenne are no exception.

References:

  • This type of muscular dystrophy was named after the French neurologist who discovered it, Guillaume-Benjamin Duchenne.
  • Duchenne muscular dystrophy (DMD) is a recessive and progressive affliction. Due to the lack of the protein dystrophin in muscle cells the muscles’ strength gradually keeps decreasing.

Deflazacort. Meestal een zegen, soms een vloek?

Elk kind is uniek. Elk kind heeft recht op individualiteit en een individuele benadering, in ontwikkeling, geluk en… medische zorgen.

In 2007, toen onze oudste zoon al 6 jaar was, werd na een -wel ja- lijdensweg vastgesteld dat hij de Duchenne* spieraandoening heeft (DMD). Kort daarna begon hij met de dagelijkse inname van Calcort, tabletten met Deflazacort, een corticoïde.

Onze zoon is nu 12 jaar, en samen beslisten we recent om te stoppen met deze pillen.

Alhoewel onze beslissing individueel is, op zijn maat en niet veralgemeend kan worden naar andere kinderen delen we graag het waarom en hoe van deze ingrijpende beslissing.

Het einde van de lagere school nadert. Onze zoon maakt zich klaar voor de middelbare school, een ‘gewone’ middelbare school omdat (1) hij zo mobiel is, (2) Duchenne geen invloed heeft op het cognitieve en (3) hij wil aantonen dat een kind met zijn aandoening dit aankan. En gelukkig genoeg hebben we een school in onze buurt die hier helemaal voor open staat, en deze stap wil zetten met ons.

Echter, alhoewel hij voor zijn leeftijd erg mobiel is, is zijn zelfbeeld eerder wankel,

  1. Hij maakt zich vanwege zijn gestalte en uiterlijk zorgen. Onze zoon is erg klein, heeft een kort, gedrongen figuur en een gezwollen gezicht.
  2. Hij vertoont bijzonder kinetisch gedrag, en vaak buiten zijn controle om, zo lijkt het. Hij slaapt ook te weinig, heeft concentratieproblemen en dikwijls gewoon een overvloed aan energie die hij niet kwijt raakt.
  3. Lichamelijk is er duidelijk sprake van uitgestelde puberteit.

Toevallig werd onze aandacht recent gevestigd op het effect dat Calcort heeft op het uitstel van puberteit. Geïntrigeerd doken we opnieuw in de andere neveneffecten en vonden dat al de vermelde kenmerken van onze zoon erg typisch zijn bij de inname van Deflazacort en aanverwanten: gewicht, gedragsproblemen (het lijkt op ADHD, maar is het niet), gezwollen gezicht (door het vasthouden van vocht), geremde groei, uitgestelde puberteit. We vonden informatie van artsen en ziekenhuizen die, bij gebruik van corticoïden bij jongens met Duchenne, uitdrukkelijk wijzen op deze bijwerkingen en op proactieve opvolging hiervan.

Op basis van onze eigen research kwamen we ook op andere bedenkingen:

  • De voordelen zijn langere levensduur, lagere kans op Scoliose en betere hart- en longfunctie, maar worden nogal vaak beschreven als ‘mogelijk’, ‘vermoedelijk’ en ‘waarschijnlijk’.
  • Onze zoon krijgt 18 mg per dag. Op basis van zijn gewicht zou hij tot 40 mg moeten krijgen, alhoewel er een bovengrens is van 36 mg. Alleszins, er is duidelijk sprake van onderdosering. De dosering is in de voorbije 6 jaar ook nooit aangepast. De meeste studies vermoeden ook bij lagere doses wel een gunstig effect overigens.
  • Onze zoon heeft niet enkel nog een goede motoriek, maar ook zijn botdensiteit (Deflazacort kan tot broosheid leiden) en hart- en longfunctie zijn perfect, en niet te onderscheiden van een kind zonder de aandoening.

Dus hebben wij beslist om te stoppen met Calcort. We bouwen geleidelijk af zodat zijn bijnier de productie van het hormoon Cortisol zelf terug opneemt. Dat was geen eenvoudige beslissing en bijzonder emotioneel. Het gaat tenslotte over zijn toekomst. Alhoewel we deze beslissing quasi autonoom hebben genomen, zijn we, met alle informatie waar we over beschikken, betrekkelijk gerust dat het -op dit moment- (alles is tijdelijk) de juiste beslissing is (zoals het de best mogelijke beslissing was om lang geleden met Calcort te beginnen).  O N Z E   B E S L I S S I N G.

Sommige studies geven de mogelijkheid van een alternatief regime aan, of adviseren een later dagelijks tijdstip van toename (vooral voor de gedragsproblemen). Wij zien weinig reden om dit te doen, zeker gezien onze beslissing niet op protest werd onthaald door onze begeleidende instelling. Gelukkig hebben we het met onze huisarts grondig kunnen doorspreken.

Wij nemen als ouders, ook niet voor de eerste maal overigens, zelf onze verantwoordelijkheid, kijken naar het totaalbeeld van onze zoon, zijn individuele situatie (wij spreken ons niet uit over andere kinderen) en stoppen voorlopig met deze steroïden.

Deflazacort (of aanverwante producten) is het enige middel bekend dat mogelijk een gunstig effect heeft op de ontwikkeling van DMD. Daarom beschouwen wij het niet noodzakelijk als een verplichting, te geven vanuit een houding van therapeutische hardnekkigheid, zonder rekening te houden met alle andere levensaspecten van onze zoon.

Elk kind is uniek. Elk kind heeft recht op individualiteit en een individuele benadering. Kinderen met Duchenne vormen daar geen uitzondering op.

Referenties:

  • De Duchenne spieraandoening werd genoemd naar de Franse ontdekker ervan, Guillaume-Benjamin Duchenne.
  • De spierdystrofie van Duchenne (DMD) is een erfelijke en progressieve aandoening. Door het gebrek aan het eiwit dystrofine in de spiercellen neemt de spierkracht geleidelijk af.

Happy Holidays 2013

To everyone who helped in 2013 make the world a little bit of a better place to live and work in (and all others), we say:

“H A P P Y    H O L I D A Y S”

Fijne Feestdagen 2013

I was great knowing you, talking to you, working with you, feeling you were around.

See you next year, for more of the same.

Ian, Jente, Nienke, Gunther & Natascha.