Not going to the LIVEStRONG Challenge in Austin? So what

Not going to the LIVESTRONG Challenge in Austin this year? So what.

That’s the usual response I get when I tell people that my vacation and me riding my sponsored cycling event is not happening again this year. There’s always next year is another common response. But the people saying that (who usually have had their vacation already) don’t get it. When I became the victim of a hit and run 16 years ago that left me with a totally destroyed right leg the doc told me I would never walk again. A very clever doc stepped outside the box and came up with a solution that (in his words) would make life very hard. My leg would hurt 24 / 7, as if I just walked into the sharp point of a table (from ankle up to my hip). I would need to do 5 hours of exercises every day (2.5 in the morning, 2.5 hours in the evening and it still would be a temporary solution, eventually I would end up in a wheelchair. I choose this option consciously, but didn’t calculate on the side-effects. Even though I’m always in pain, I’m pretty determined not to tell everybody and most certainly not let on that I am in pain. I want(ed) to be more than my challenges (I don’t like the word handicap). I couldn’t foresee that not complaining means that some people  think I don’t have these challenges (?) of call me moody if I struggle to make it through the day without saying the pain is worse than usual. That is hard, but over time I learned that I can’t blame people for doing that, if I don’t tell them often about my condition they can’t know how hard it sometimes is to make it through the day. Unfortunately the hot and run wasn’t the only setback. Two years ago I almost died as the result of multiple lung embolisms in both lungs (that recurred last ear). Since I barely made it to the ICU in time those embolisms caused permanent damage to my heart which resulted in chronic fatigue. Accepting that was/is very hard but again, complaining about that isn’t my nature. Once again I understand its hard for people to understand how difficult it sometimes is to just make it through the day and what price I pay for pretending to do just that. Sometimes I feel the urge to tell people that complain about their health, “ just deal with it, it isn’t that bad”. Add a busted shoulder as result of a nasty fall a few years ago and three benign liver tumors and you have the current state of my health. And nevertheless I start each day with positivity and optimism. And THAT is why not going to Austin is bad.   Because in Austin lies the source of my optimism and positivity, I became a LIVESTRONG Leader because Lance’s example made me chose the hard solution right after the accident: pain is temporary (not in my case), but quitting lasts for ever. The fact that I’m still walking on crutches (although its getting harder every month) is a direct result of Lance leading by example. As the opportunity to repay him for that, combined with honoring my niece Judith and my Uncle Piet, occurred I never hesitated a second. And that was the best decision I ever made: within LIVESTRONG I found a group of people with the perseverance and positivity that confirmed me in my believes that complaining doesn’t help, despite the fact that not complaining is held against you sometimes.

When I finally got the ok to ride a bike again and could participate in the LIVESTRONG Challenge in Austin I got invited by an amazing survivor, Jody Schoger who invited me into her heart and home, giving me an unique opportunity to get ready for my first LIVESTRONG Challenge. I was flabbergasted, she didn’t even know me personally!! What an awesome, caring lady with an exceptional heart. As we arrived in Austin I was greeted by LIVESTRONG’s CEO, Doug Ulman, who actually knew who I was?!?!? A simple volunteer who joined the Foundation only shortly and hadn’t done much, but he knew who I was and knew my story. I know of no other charity that has that. I was surrounded by fellow Leaders and the amazing survivors of CCC, a special group of cyclist my “CCC-dad” Mike Terry (another inspiring, caring person) introduced me to. They all had their story and an indestructible optimism and positivity. Those three days in Austin gave me enough energy to last me a year. In the following years I had the great pleasure to ride the Challenge again and attend a few LIVESTRONG Leader Summits. And each time I came home with lost of energy, optimism and positivity. Because they got it: the pain/troubles/challenges (limitations) and living with a bad prognoses and yet, nobody let it get them down! And for the third time in a row I will have to miss out on that and that hurts pretty badly, especially because this year the change I could thank Lance Arnstrong personally was more real than ever because I would be riding in his team. Right now I hope I get enough birthday money to at least be able to buy the Team Lance and Friends cycling jersey, so I can be there a bit anyways.  But together with two of my largest sources of inspiration, Shu Milne and Katherine Kilcullen who also can’t make it to Austin again, I hopefully look forward to next year because that’s the year all three of us WILL BE THERE, NO DOUBT!!!

Niet naar de LIVESTRONG Challenge in Austin, nou en?

Dat is de gebruikelijk response die ik krijg als ik zeg dat mijn vakantie en sponsorrit naar en in Austin dit jaar weer niet doorgaat. Er is altijd volgend jaar, ook een normale response en ik begrijp het wel. Maar de mensen (die meestal zelf al op vakantie geweest zijn) met die response begrijpen het niet.
Toen ik bijna 16 jaar geleden aangereden werd en mijn rechterbeen totaal verbrijzeld werd was de diagnose nooit meer lopen. Een vindingrijke arts dacht buiten de box en kwam met een oplossing waarvan hij zelf al aangaf dat het moeilijk ging worden. Mijn been zou altijd pijn doen 24/7, alsof je net met je been tegen de punt van een tafel gelopen bent (van enkel tot bijna aan mijn heup), 5 uur oefeningen om inderdaad te blijven lopen (2.5 uur ‘ s morgens en 2.5 uur ’s avonds) maar het zou een tijdelijke oplossing blijven, uiteindelijk wordt het hoe dan ook een rolstoel. Ik koos bewust voor deze optie, me niet bewust van de “ neven-effecten”.  Ook al heb ik altijd pijn, ik ben vastbesloten dat niet constant tegen iedereen te zeggen en het zeker niet te laten merken. Ik wil(de) meer zijn als mijn beperking (ik hou niet van het woord handicap). Wat ik niet voorzien had is dat het niet klagen tot gevolg heeft dat sommige mensen denken dat ik niets mankeer (?) of me sjagerijnig noemen als ik het een dag niet helemaal verborgen kan houden. Dat is moeilijk, maar in de loop der jaren heb ik geleerd dat ik dat die mensen niet kwalijk mag nemen, als ik niet klaag kunnen ze ook niet weten dat het niet altijd even makkelijk gaat. Helaas bleef het niet bij dat ongeluk, maar overleed ik twee jaar geleden bijna aan meerdere long embolieën in beide longen, die vorig jaar terug kwamen. Omdat ik maar net op tijd op de IC terecht kwam was er al permanente beschadiging opgetreden aan mijn hart wat chronische vermoeidheid oplevert. Dat accepteren was/is erg moeilijk, maar opnieuw zat het niet in mijn aard daar vaak over te klagen. Ook nu begrijp ik dat het dus voor mensen lastig is te begrijpen hoe moeilijk het is een dag lang op een normaal niveau te functioneren en hoeveel me dat kost. Soms heb ik de neiging tegen klagende mensen te zeggen “stel je niet aan, het kan veel erger”. Voeg daar nog bij een kapotte schouder van een val een aantal jaren geleden en 3 niet-kwaadaardige tumoren in mijn lever en je hebt in dagelijkse toestand. En toch begin ik iedere dag weer vol goede moed en een positieve instelling. En daarom is het zo erg dat ik weer niet naar Austin kan.

Want daar ligt de bron van mijn optimisme en positiviteit. Ik ben LIVESTRONG Leader geworden omdat Lance’s voorbeeld me net na het ongeluk liet kiezen voor de moeilijkste, zwaarste oplossing: pain is temporary (not in my case), quitting lasts forever. Ik dank het feit dat ik nog steeds op krukken kan lopen (al wordt het steeds moeilijker) aan zijn voorbeeld. Toen ik hem dus kon terugbetalen  voor dat voorbeeld EN de familieleden die ik verloren had aan kanker (nichtje Judith, oom Piet) kon eren heb ik geen seconde getwijfeld. En wat een goede beslissing is dat geweest: bij LIVESTRONG vond ik mensen met doorzettingsvermogen en positiviteit die me sterkten in mijn overtuiging dat klagen niet helpt, ondanks het feit dat het soms tegen je werkt. Toen ik eindelijk zo ver was dat ik weer mocht gaan fietsen en deel kon nemen aan de LIVESTRONG Challenge in Austin werd ik uitgenodigd door een geweldige survivor, Jody Schoger, die me in haar hart en huis uitnodigde, waar ik me kon voorbereiden op die eerste Challenge. Verbijsterd was ik, ze kende me niet eens persoonlijk. Wat prachtige, warme vrouw met zoveel uitstraling. Eenmaal in Austin werd ik bij de Challenge begroet door de CEO van LIVESTRONG, Doug Ulman, die wist wie ik was!!! Een gewone vrijwilliger die echt nog niet veel gedaan had, maar hij wist wie ik was en kende mijn verhaal. Kom daar hier maar eens om. Ik was omringd door collega’s Leaders en de prachtige survivors van CCC waar mijn CCC dad Mike Terry me geïntroduceerd had (ook al zo’n bron van inspiratie), allemaal met hun verhaal maar ook met hun onverwoestbaar optimisme en positiviteit. Die drie dagen gaven me genoeg energie voor een heel jaar terug in Nederland. In de jaren die volgden mocht ik nog een paar keer de Challenge rijden en daarnaast een paar maal een LIVESTRONG Leader Summit bijwonen. En iedere keer weer kwam ik meet een berg energie, optimisme en positiviteit terug. Want daar begreep men het, de pijn/moeite/beperkingen en de slechte eindprognose, en toch liet niemand zich daar kisten. En nu voor de derde keer op rij moet ik dat missen en dat doet zeer heel zeer, zeker omdat de kans dat ik Lance persoonlijk kon bedanken voor zijn inspiratie erg dicht bij was omdat ik in zijn team zou rijden. Op dit moment hoop ik voldoende geld bij elkaar te krijgen voor mijn verjaardag om het wielershirt van het team waar ik dit jaar voor zou rijden, Team Lance and Friends, te kunnen kopen zodat ik toch een heel klein beetje het gevoel heb er bij te zijn.  En samen met twee van mijn grote inspiratiebronnen, Shu Milne en Katherine Kilcullen die ook weer niet kunnen, kijk ik weer hoopvol vooruit naar volgende jaar, dan gaan we er alle drie zijn, zeker te weten!

Hierarchy of illnesses

Earlier this week Henrike Hirsch posted a message on FaceBook that got me thinking. The post stated the following:

"I really don't get this whole "hierarchy of illnesses" thing. Some people live with cancer, some live with diabetes, some live with physical limitations due to any kind of illness/condition, some live with depression... it's all challenging for the mind and the body to deal with".

I reacted from my experience as someone with " less important diseases and handicaps"  and even at that point I got the idea people didn't get it.

Am I happy I don't have cancer? YES!!!!! But does that mean my life is easier and my physical limitations aren't  life changing, challenging and painful? And yes, it does sometimes feel like I shouldn't complain because I don't have cancer.

When I was rushed to the ICU on July 3rd 2013 due to multiple embolisms in both lungs that came within 5 minutes of killing me it surprised me afterwards that the most reactions didn't come from the people I expected them from, those who have experienced life threatening diseases. Of course there was the hard core of people surrounding me that reacted and stood by me on FaceBook and Twitter but not as many as you would expect. The second time I ended up in the hospital with multiple embolisms in both lungs (which hardly ever happens) the response was even less. 

In between I got diagnosed with a damaged heart due to the first pulmonary embolisms, resulting in chronic fatigue and again I expected reactions from the group op people who experienced that as result of their cancer treatment but again it where the same few people that reached out.

I got another scare when the doctor discovered three liver tumors and it looked like cancer for a few weeks.  And yes, this time the response was way bigger (because it looked like cancer?). Happy with that of course and over the moon when we discovered they where benign, THANK GOD !!! 

Talking about the Face Book post previously mentioned with a friend it asthonished him that obviously that hierarchy does exist, even among people you might expect to see beyond that. He doesn't get why do I still have to apologize for not being able to drive very far because my leg gives out after 20 minutes of driving and I need to make a rest stop for 20 minutes? Why do people think Im grumpy when in fact I,m in a lot of pain (that leg hurt always but more one day than the other) or the fatigue is getting to me more that " usual"?  Is not complaining about your handicaps the right way to go? I don't want to because I think I don't have much to complain about and complaining doesn't make the pain go away or make me less exhausted. I know that most of the time people don't even realize the challenges I face each day to just function normally. And I  know I most of the time I'm cheerful and caring towards others as if I don't have a careen the world. Does that work against me? 

Again, this post is NOT about me being pathetic and feeling sorry for myself because I don't. I know I am more than my handicaps and illnesses and do make a small difference through my volunteer work for LIVESTRONG for which I will be for ever grateful to them (for allowing me to do that). I am currently working very hard again to ride my bike for those who can't at the Austin LIVESTRONG Challenge as a proud member of Cyclist Combatting Cancer and Team LIVESTRONG but is it really so wrong to hope that people will see that even though I'm not a survivor riding even the shortest distance with my limitations is a tremendous Challenge? I am grateful for those people that are always there to support me (Kath Kilcullen-Bergeron who like me refuses to let her handicap get her down, Shu Milne, Steve Bartolucci, Mike Terry, Anna Cherry, Anne Chen, Scott Joy and Jody Schoger to name a few. Sorry if I forget some people). 

Just wonder if the hierarchy of illnesses that Henrike describe so well does affect the way people react to other people.

Maybe I'm guilty of believing in that hierarchy as well because I am deeply grateful I don't have cancer. How about you? 

Just remember I will never quit, let my handicaps or illnesses slow me down or feel sorry for myself because I take proud in what I CAN do. Off to the Austin LIVESTRONG Challenge, hoping I make both my teammates at Team LIVESTRONG as my teammates of Cyclist Combatting Cancer proud!!

 

L

Forced to look at myself

Today I had a long talk with my intervisor whom I met studying for my last degree (not this Masters). Since we don’t do intervision at work and I’m structurally uncertain about how I perform at work and always think if I get criticism it probably is my fault because I’m the one that needs to change, I really like these moments to evaluate work and myself.

After a crazy busy month at work in which I desperately tried to get everything done but (of course) failed in that goal I needed someone who’s not involved to look at things and me before going back to work.

Surprisingly she wanted to look at this last year and what happened to me first. The following is what she made me realize and showed me. I know it isn’t very Dutch to talk about yourself this way but she forced me to look at things this way.

The year started with a the aftermath of the rejection problem I had last year, which made it necessary for me to take medication that put all the weight I lost back on. Struggled very hard to loose it again, simply accepting the fact that all that hard work had been lost, due to something out of my control. I had to start all over again, again! I never told anyone how much it hurt that people assumed I just missed the will power to keep the weight off: loosing it is easy (no, it isn’t) but it keeping it off is the problem. Never stood up for myself and said: NO. I did manage to keep it off and I’m very sad I put it all back on for this reason. And I feel very bad being this seize. It literally hurts to see myself in the mirror. No, I put on my game face, acted as if I didn’t care and started loosing weight all over again.

After that came the pulmonary embolisms in July.  The fact I came this close to dying hit me late and has been having a bigger effect on me as I suspected. I was back at work in no time and returned to full time work in 5 weeks, just seven week after literally being 5 minutes away from death. I never even though about not resuming work that quickly, its just who I am, I don’t complain and keep going (as I am told today by my intervisor). When my lung doc told me I wasn’t allowed to fly to Austin for the Challenge, it really broke my heart. I ventilated a bit how bad I felt about that but no-one realized how much of an impact not going had on me. I felt awful coming back on my word to be there for my mentees and I missed seeing all my friends from LIVESTRONG and CCC and the inspiring staff from LIVESTRONG HQ. As my intervisor pointed out, I did what I always do, don’t complain or feel sorry for yourself to long, there are worse things in live and find something else to look forward too. So I decided to go and spend Thanksgiving with my American sis Sue Lohle and her family. And than my money got stolen….. So, no visit to Sue either.

Accepting that as a fact, I went on as usual. Meantime I was looking forward to getting rid of that exhaustion that was with me ever since the pulmonary embolisms that damaged my heart. It never stopped me from working fulltime, all out, and doing my two LIVESTRONG Spinning classes per week and two LIVESTRONG volunteer shifts at a hospital each week.

Then came that bad day that I went to see my lung doc for my last check-up and he found a large spot on my liver.  He assumed it hadn’t been there before and was very alarmed.  I just kept thinking that liver cancer doesn’t appear on its own often, so if it was cancer it also was metastasized already. The next two weeks where horrific but I kept on going (thanks to some amazing LIVESTRONG friends like Anne Matterne and Anne Chen  and a great shoulder to lean on at work Ruud Jellema): never missed a day of work, did my LIVESTRONG activities and acted as if all was well. Tried to be my usual self but didn’t even react when told I didn’t need to react grumpy every once in a while. As my intervisor pointed out today, I should have answered I was doing all I could not to fall apart and let my fear get the better of me. Of course, my character ensures I need to see proven its malignant first but I was scared at times too, and that was why I reacted as I did. Reminding people of that isn’t something I do, I just apologize for “my behavior” and try even harder to be the ”perfect machine’ (amazing how someone else sees that). 

Luckily I was diagnosed with three malignant hemanglioma. But in the same conversation my doc told me the exhaustion I had been experiencing would be chronic. Leave it up to me to take the positive news and ignore the bad. As it set in I did mention it to some people and got good advice, among others form Jody Schoger, who send me the spoon story that I used to explain to people what this chronic exhaustion does to me. As people in The Netherlands aren’t used to that, and certainly not from me, not many people reacted and I never “ forced them” to tell me they got the impact it has on me and my day to day activities. I just tried to work harder and do the same amount of work I always do.

As we talked this afternoon my intervisor tried to tell me I have been doing great, something I will never accept for myself. She wants me to acknowledge that, even if I slip up and can’t live up to everybody’s expectations and even harder, my own standards, I can be proud of myself.

She listed the following (her words, not mine):

- I lost more weight than I put on despite everything going on. I did this by working very
  hard to do so and making the smart decision to seek help to go back to eating normally

  after being on a diet for over a year. Grateful for Manon Schoonbrood-de Haas of DieEet

  Slim. I have a right to be proud of what I achieved in this field, no matter what people

  tell me;

- I managed to do my work again within 7 weeks of almost dying. I manage to do as 

  much as usual despite  my chronic fatigue and added workload this last month;

- I manage to act the LIVESTRONG way, so stay positive, be friendly to people and try to

  make a difference. When people tell me I “snapped” I need to learn to tell them I didn’t

  just snap but have trouble to keep going because I’m  exhausted and am only human.  

  I’m not the perfect machine some  people prefer. I am never unkind to people on

  purpose or for no reason because I believe in the positive, respectful way of interacting

  with people the amazing staff at LIVESTRONG HQ showed me;

- The things I do for LIVESTRONG might not be big or raise much funds and I will never

   be LIVESTRONG Leader of the year but I do live and breathe LIVESTRONG. My office

   has lots of LIVESTRONG stuff in it, because it inspires me and I believe in their mission

   and the way they interact with people. They are my role models. I have to learn to

   accept the compliments of the survivors participants of my LIVESTRONG spinning

 class because for them, I am the hands on LIVESTRONG help and in that way I do make

 a difference. Same thing with the volunteer shifts.

It was very strange for me to be forced to look at myself in a total different way and I’m sill not sure she’s right but I promised to write this down, although it is totally Not Dutch to write in this fashion about yourself.  Now I need to work on believing in myself based upon the positive way this lady sees me.

The lasting lessons from the 2013 LIVESTRONG Assembly

The last week of February was all about the 2013 LIVESTRONG Assembly for over 200 global leaders and myself. We were joined by the amazing staff of LIVESTRONG HQ and their one of a kind CEO, Doug Ulman. Also invited where LIVESTRONG's partners in fighting cancer, all in all a very divers gathering. I am sure you have seen plenty of pictures and inspiring stories telling you all about how the Foundation is going forwards after a few difficult months and they are all true.

As all of us worked very hard to define our meaningful actions for this year and tried to join forces to make the impact that LIVESTRONG has even bigger in our own communities, I started to realize something.

Not only is LIVESTRONG unique in its vision about cancer and survivorship, they have another quality that all of us can learn from and should try to adapt: they have the rare ability to create an positive energy in a room full of people that not necessarily agree with the actions they take. No matter what your opinion is about the subject at hand, they listen, value your opinion and respect it and you. That doesn't always mean the course of action is changed but creates an atmosphere in which it is safe to have a different opinion and where the dialogue leeds to positive action.

On the plane back from Chicago it dawned upon me: although I was exhausted I was also full of energy and positivity, ready to work even harder to reach the goals all of us set at the Assembly.  I was touched by the way the LIVESTRONG staff radiated positive energy and wondered why this made such an impression on me. And than it hit me: it made such an impression because it seems that in the last couple of years negativism has taken over much of our interaction. Yes, times are hard, work is scarce and it will probably stay like that for a bit.

But does that justify treating each other badly? Do we always need to see the negative side of things? Why can't we approach each other as the LIVESTRONG  staff treated all of us, with respect and positive energy?

Some days my bad leg hurts so bad I almost don't want to get up and go to work. I always go, but does the fact my leg hurts even more than usual give me the right to be cranky towards others? And if I am, does that give other people the right to draw their own conclusions about that, without even wondering why I act that way (I usually don't)? Does every work suggestion need to be answered with " we'll do it my way" instead of thanking someone for thinking along and considering whether they have a point or not??? I have plenty more examples of this but I think we all get the picture.

As I went back to work on Monday I was once again reminded of the positive attitude and energy I took back from the LIVESTRONG Assembly and I decided to adopt the way the LIVESTRONG staff conducts itself (and no, I don't think they are perfect. Everyone has his or her flaws but the general attitude over there is something else).

 I put my " You are the LIVESTRONG Foundation" card on my computer as a constant reminder how  I want to conduct myself from now on: positive and respectful to others.

I think LIVESTRONG's staff, CEO and founder have another amazing legacy, besides being awesome cancer fighters: they make this world a better place for all of us, survivors or not.

From the bottom of my heart to all of them: THANK YOU !!!!!!!!!!

Open letter to Lance: THANK YOU SO MUCH

It has been a while since I blogged and I was starting one on the LiveSTRONG Challenge in Austin when I heard you stepped down as chairman of the board and now as board member. To me this is very sad news. No matter what people may believe you did or did not do during your cycling career, for me this is getting out of hand. I want to start off with saying I’m still not convinced you doped. The entire process of getting others to testify on hear say and speculations by promising them they will be punished lightly sits totally wrong with me. It feels like a witch-hunt, not based on solid evidence. I have been called stupid, brainwashed and star struck for my opinion but I don’t care. I’m simply not convinced and think you would never put anything in your body that harms you after what you have been through. And I have the feeling you wouldn’t enjoy the win if you didn’t beat everyone fair and square. But now you are "forced" to step away from your true legacy: LiveSTRONG. Of course I understand LiveSTRONG is bigger than you and I admire you for putting the Foundation before your own interests and distancing you from it now. BUT YOU SHOULDN’T HAVE TOO. And that’s why I write you this letter, because I am so very grateful for all you did and still do. As I have told people over and over again: you are the one that literally kept me walking. I got hurt in a hit and run accident in the year you won your first Tour de France and seeing you do that gave me the strength not to give up and work hard enough to not be confined to a wheelchair but walk with crutches. You inspired me and pulled me through the worst time of my life. THANK YOU !!! Five years ago, after I became a LiveSTRONG Leader, your example got me back on the bike and training for my first LiveSTRONG Challenge. If things got bad I remembered your “pain is temporarily, quitting lasts for ever” and that kept me going! THANK YOU !!! I have been able to participate in three Challenges after that. Going to Austin and raise enough funds to be invited to the Fundraising Appreciation dinner has been the highlight of these years. Hearing you and Doug speak there has made an everlasting impression on me. My goal has been and will be to raise enough Funds to be invited to the Ride for the Roses weekend, not only because that will give LiveSTRONG the opportunity to do more of their amazing work for the 28 million affected by this disease, but it will finally give me the opportunity to meet you face to face, shake your hand and say THANK YOU in person. THANK YOU for keeping me on my feet; THANK YOU for getting me back on that bike; THANK YOU for founding LiveSTRONG before knowing your own fate, thus helping millions of others; THANK YOU for fighting for those living with cancer for 15 straight years; THANK YOU for your vision which made LiveSTRONG into a one of a kind cancer charity; Thank YOU for all the time and effort you put into LiveSTRONG; THANK YOU for letting me be a LiveSTRONG Leader which allows me to give back a little and honor those affected by this disease; THANK YOU for letting me be a Team LiveSTRONG mentor, so I can help participants all over the world meet their goal and experience the amazing event a LiveSTRONG Challenge is; THANK YOU from all the survivors in the LiveSTRONG spinning class I teach each week for the hope and inspiration you still give them; THANK YOU from all the survivors in the hospitals I go to each week to do volunteer work for LiveSTRONG which gives me the opportunity to tell them about the amazing Foundation you founded. So as soon as I can register for next years Challenge I will and I will work even harder to make that Ride for the Roses weekend. I hope the world has come to its senses by then and you will be back where you belong, with the LiveSTRONG Foundation. And maybe my wish will come true and I will be able to simply say THANK YOU in person.

Resilience, optimism and positive look on life

It has been a while since I my last blog. As you know I hurt my bad leg pretty badly during the Austin Challenge. Once I got home I saw my own doctor and it became obviously that the damage to my knee was healing well but the ankle needed surgery. When it became clear that surgery didn’t do the trick ( I couldn’t put my foot down straight) another one was scheduled and the position of the foot was corrected by “rerouting” the muscle.

A few check-ups later the pain hadn’t really gone down and my doctor started to fear it never might. It was a known side-effect that hardly ever occurs ( both of us should have know this would be the case for me).

I wasn’t too happy about that but starting November 2nd I finally got rid of the emergency anti-rejection medication that put all 30 kg that I lost back on and I was allowed to start a very careful designed training schedule again. I was allowed to get back on the bike and start preparations for this years Challenge, a great feeling.

Just before Christmas LiveSTRONG did me the tremendous honor of making me a Team LiveSTRONG mentor for all foreign participants, something that made me very happy and even more motivated to be able to ride a decent Challenge this year.

But as time progressed it became more and more clear that the additional pain the ankle generated was there to stay. When I found out I kind of felt sorry for myself: why on earth do these things keep happening to me? Teaching LiveSTRONG spinning class for survivors was as always a humbling experience and I never lost track of the fact that the 28 million had much more reason to complain. But I was also surrounded by lots of other people who’s life seemed to have no problems at all and my dear and wise friend Jody always tells me my struggle is just as real, only different.

Then came last Friday and I was visited by a friend who’s life hit a rough spot an couple of months ago. Although it wasn’t touched by disease, it sure wasn’t fun.

As we sat down and started talking my friend showed his usual resilience, optimism and positive look on life, despite what was going on. As the conversation went on I learned his life had been so much rougher than I ever imagined and still there was my optimistic, positive friend showing so much resilience it left me in awe. Right there and then I (figuratively) kicked myself and decided no more feeling sorry for myself. Too bad “hardly ever occurring side-effects” always happen to me, to bad I gained the weight (I’ll loose it again), too bad I didn’t get to ride the distance I wanted to at the Challenge (I will make up for it this year) and too bad the pain got a bit worse. Whenever things get rough again I will think about my friend, giving me yet another example how people, even outside my LiveSTRONG family, do LiveSTRONG!

LiveSTRONG Challenge: Thursday and Friday

After spending some fun days with my friend Sue and her family (did my first hay ride and corn maze and watched her son do Robotics) I arrived in Austin Thursday October 13th. After spending some (!) time at the airport waiting for Karen to arrive we made it to our rental car (got an upgrade) at 8.30 pm. To safe money we decide not to pay extra to be able to both drive so Karen was the driver for the weekend. Kind of odd for me though. Started driving to our motel and checked in. Upon arriving in our room we discovered there was only one bed. As I explained to the clerk, we like each other but not that much . She understood and gave us another room.

The other morning Karen and I drove downtown Austin to find LIVESTRONG village at Mellow Johnny’s for the package pick up. The sight of LIVESTRONG village is enough to put you in a great mood, the bright yellow and all those kindred spirits, all ready to kick cancer to the curb! It was really nice meeting Erik Pearson and his lovely wife Lynn just outside the pick up point and we decided to have coffee together a little later. After that it was time for Karen to have her first Mellow Johnny’s experience. Let me tell you, for LIVESTRONG supporters that place is heaven! (for cyclists too, but for another reason. Since I am both for me this a the best shop to go to). We both saw stuff we REALLY needed and that had our names written all over it. I also got to speak with Todd who assured me he had the perfect bike for me. It belonged to Lance’s stepdad !!! We had to hurry to be on time for our coffee with Erik and Lynn. I loved finally meeting Lynn, Erik I had already met during last years Challenge. After spending some quality time with them Karen and I headed back to our motel, since we both had places to be that afternoon/evening. I was very excited because Henrike, my friend and fellow LIVESTRONG Leader from Germany, had made Ride for the Roses status and invited me to be her guest for that weekend. Still can’t thank her enough for that! That mend I was co-invited to the Welcome to Texas dinner that evening.

As we arrived at our motel we where very much surprised to find ourselves locked out of our room. In a hurry we made our way back to the front desk where a new clerk told us to wait, she was going to fetch her boss. That lady informed us we where in the wrong room. I started to explain what had happened the other night, thinking this was the cause of the misunderstanding. She heard me out and than said, actually you are in the wrong motel and you will have to leave!!!!!! Turns out there are many motels by this name in Austin and the desk clerk on duty the night before should have seen we didn’t have a reservation there. The lady told us we couldn’t just switch our reservation to this motel because they are franchised, she already lost out on one night pay. I explained that we really couldn’t move out there and then: I had a dinner to go to and Karen would do some volunteer work at LIVESTRONG village and was expected there any minute. After some talking back and forth she told us we could stay until the next morning.

So we hurried upstairs and got changed. Karen went back to LIVESTRONG village and I made my way to the Hyatt hotel where the pick up for the dinner was. Arriving in the lobby I ran into my CCC “dad” Mike (he got me involved with CCC) and his lovely daughter Katelyn. As we started to catch up other CCC friends came in as well. Great meeting and talking to Steve Bartolucci and Scott joy again. After a while Henrike walked in and I was finally able to thank her in person for being so generous.

When we got on the bus and it moved away from the hotel we where greeted by a LIVESTRONG staff member who told us where the dinner was going to be held. Imagine the buzz when she told us it was at LANCE’S HOUSE!! How cool can it get. We hardly had time to get over the excitement when we arrived there. We entered the house through the dining room (we think) and made our way to the backyard where the horse d’houvres and drinks where served. Within minutes we ran into Matt McGinty and his wife and at last I saw the person I had been waiting for all day: the man that made it possible for me to come to Austin, Brad!!! He, of course was in the company of his lovely wife Jennifer, the lady getting the autographed jersey as an anniversary gift. Finally I could tell everybody how grateful I was for his help. Brad was the true gentleman and made it look like he had me to thank but we know better right  ! A few minutes later we where joined by Luke and his mom Victoria, other great Twitter friends that I now got to meet in person.

The dinner itself was amazing: the garden was beautifully decorated and the house made a stunning background. We sat down at a table with Matt McGinty and his wife and some other LIVESTRONG supporters. The food was excellent as was the company. The Gipsy Queens made their way from table to table and serenaded everybody and our “boss” held a speech that inspired all of us even more. It was an evening to never forget! I have been asking myself what pictures to include in this blog, I decided for LiveSTRONG Village, The Honor wall with my family members and one of The Boss’.

LiveSTRONG Challenge 2011 part one: before I left

Where to start with the story of this years LIVESTRONG Challenge? As most of you know 2011 hasn’t been my year thus far: I almost lost my leg beginning January, an experience that shook me to the core and made me realize once again how fragile the situation with my leg is. The treatment put all 30 kg back on that I lost with hard work last year. This to the joy and pleasure of some, now former co-workers, who referred to me as “the whale” or “the elephant” behind my back, not realizing these kind of remarks always find their way back to the one they are made about. That hurt me deeply because I knew I was fat again but it was beyond my control. It wasn’t something I was proud of or happy with. The situation at work was difficult for all of us as we faced financial crises that required harsh measures. Luckily I got to keep my job and got a new manager I love working for. During the year I had to learn my injury was not to be compared to a normal sports injury but was of a much more severe nature. It prevented me from getting as much hours in on the bike as I wanted and needed for the ride at the Challenge in October.

One of the worst things, besides the situation with my leg, was the passing of Aïsha Hunkar, a brave single mom who had been fighting cancer for a long time. I promised her and her family right there and then I would ride the Challenge this year with just her name on my back, my way of honoring the amazing person she had been.
My leg problems, the situation at work and the amount of work I did for NL4LiveSTRONG made it hard for me to concentrate on my own Fundraising, although the teamwork is very rewarding and we agreed on a good way of splitting the difference. I just did not have to time to fundraise a lot on my own as well. To top things off, my car broke down and I needed another one. This destroyed my “travel to Austin” fund, as I told you about in another blog. Sold my silver flute and my prize possesion, a jersey signed by Lance Armstrong to get the money. One of my fellow Leaders, Brad, bought the latter as an anniversary gift for his lovely wife Jennifer. he was a lifesafer!!!! To make a long story short,I couldn’t book a flight to the Challenge until the Wednesday prior to its start. That was a very nerve wrecking experience and I do hope I will never have to cut it that close again. It killed me to think I wouldn’t be able to keep my promise to Aïsha.

Knowing I could go I had to make all kind of last minute arrangements: luckily my teammate Karen was going as well and I already told her I was going to share a room and a car with her so that part was taken care of. My friend Sue made sure I would be able to get from her house in CT to Austin and made all the travel arrangements for that. But I still needed a bike!!!! I decided to write an email to Mellow Johnny’s to explain my situation. I got a reply from Todd telling me they where going to do their utmost to help me out! Great people at a great store let me tell you.

So, despite all the odds being stacked against me I left for the US on Monday October 10th!!