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!!

Parting is such sweet sorrow

Well, the first donations in honor of Aisha Hunkar have been made or pledged so thank you all for that! I hope to reach my Fundraising goal and honor her memory in that way as well, not “just” on the bike.
Riding the bike is going as planned, not progressing fast enough to my liking but I’m getting there, one step at a time. I will be able to do the mileage my doc will allow me to, even if it feels like I did 100 mile afterwards. I don’t care about it putting me in the wheelchair for a few days, it will be worth it.
 
One thing not going to well is saving up enough money for the flight and my stay there. Don’t worry, I won’t use any money that is donated to my Challenge in honor of Aisha but I have to find a way to make money quickly and I found it.
 
I am the proud owner of a commemorative Discovery Tour de France shirt, autographed by Lance. It is my price possession and the only thing that will make some money  when I sell it and that is exactly what I decided to do. I won’t be happy to see it go but if it gets me to Austin so I can keep my promises to Aisha and her family it will be totally worth it. You will understand I won’t sell it for less than the amount I need to go to Austin (and stay there), but I hope giving up this shirt will get me where I need to be. Please help me reach my goal and tell people about this one in a kind shirt and keep your fingers crossed I will be able to sell it.
 
I’ll do what I can to fulfill my promise but I can’t do it alone!

Sometimes life sucks but no matter what, it won't make me come back on my promise

As I told you earlier, 2011 didn't start well for me. After almost losing my leg beginning this year I have been struggling to get back to my old level, both walking and riding the bike. As stress at work with a reorganisation and a hostile co-worker added to my physical discomfort, my goal seemed to be further away than ever. I finally got permission to get back on the bike a few months ago, but only for a few minutes a day. As the treatment to save my leg put on all the weight I lost last year I felt bad but kept up the faith things would turn out ok. A few weeks ago I got assigned a new manager that I work very well with and last week I got another, equally nice to work with. My hostile co-worker has moved to another office building. My office is my own now and that reduces the stress a lot. So life was looking up again and I needed that badly. But last Friday I also had my regular check-up with my doc and I went there thinking he would tell me my leg was healing up nicely as well. Although he allowed me to up my time on the bike he also told me that he doesn't think I'll be able to ride the Challenge or in the best possible scenario just the 10 or 20 miles. As I looked at him in shock he continued that riding the 10 or 20 will feel (and have the effect of) riding the 100 miles. He realizes how important this Challenge is for me and he will continue to work towards it with me, but that was the bottom line: 10 miles will be an exeptional performance, 20 a miracle. It took some days to get over the news and getting ready to share it with you, but here it is. For all of you who think this is it, you're sadly mistaken! As I told my doc straight away: I will be on that bike in Austin and well for one very good reason: I promised Aisha Hunkar and her family I would ride this years Challenge in her honor. Unfortenuately it will be in her memorie because earlier this year we lost her to cancer after she put up one hell of a fight. You can read all about her and her courageous fight here: http://birdsperch.blogspot.com. Aisha was a 42 year old single mom with met.foll. thyroid cancer and an inspiration to us all.

So, eventhough I am way behind on my training schedule, my Fundraising (need to get to my goal $ 3500) and saving up for my trip and my stay in Austin, I WILL GET THERE, because I promised Aisha. It's that simple: I promised her and I always keep my promises. So, no matter how hard it will be to reach those goals or how bad those 10 or 20 miles gonna feel, I WILL DO IT!!! I will keep you all informerd, please keep your fingers crossed for me.

Grateful beyond words

I know it has been a while since I blogged. I still owe you an account of the amazing experiences I had when I went to the States to participate in the LiveSTRONG Challenge in Austin. The time I spend with Jody and her husband Steve which was so amazing I still can't believe two such sweet people actually exist: they made my first LSC an experience that can't be topped. The actual time in Austin, where Heidi took time out of her busy schedule to talk to me in person, meeting Doug in person and have the opportunity to talk to him a bit (and as total surprise him actually knowing who I was), being at the dinner and see and hear Lance speak: if ever inspiration came in human form, it was right there and then. Meeting dear twitter friends Erik Pearson, Henrike Hirsch, Kate, Lindsay, Matt and family. Getting to know CCC mentor and dear friend Mike Terry and his lovey daughter Katelyn, another highlight, as was seeing the CCC conference room being dedicated. All that and much more is to come. It is late but coming back things started to unfold quickly and needed all my attention (work wise).
But this blog has to be about my friends and family who just got me through one of the most difficult times post accident.
As the people following me on Twitter already know I got a bad flu at the beginning of this year: no big deal you'll think and usually it isn't. But for me the two days of vomiting and diarrhea mend that the medication that prevents the frame inside my leg to reject didn't take effect. That led to the one thing we have feared the most since having the frame put in, it started to reject. That led to all kinds of side effects which I will spare you here, suffice to say it wasn't pretty. My doc saved the day (and the leg) in the knick of time using heavy medication. This time I came with a couple of hours of actually losing my leg and it has been a long time since I was so afraid. After all that I had the misfortune to take a nasty fall in week after that, so the leg took a second beating.

And that brings me to the reason of this blog: my amazing friends and family stepping up and pulling me through. I gained 10 kg due to the medication and although I know that is not something that will kill me, I worked so hard to loose 33 kg before the Challenge and now this. Friends understood it was hard on me and tried to cheer me up and didn't belittle it (I KNOW it isn't a big deal). But beyond that, they made a schedule so someone could drive me to and from work work every day, did chores around the house so I wouldn't have to in my wheelchair. Jody understood how upsetting it is when I can't manage to do the 20 minute bike ride to nowhere: not just because it means I get behind on my schedule for the LSC but mostly because it means I have weakened so much I can't peddle for 20 minutes. It is not just a hobby I can't do (which in it self would be bad enough), it is essential to my health and strength I am able to do that. She didn't tell me, don't worry and don't blame yourself, take it easy, it will come back. She acknowledged the severity and gave me a place to vent that. My other fiends did the same in other ways: they know I wouldn't "complain" about it if it weren't important. They understand the importance of the bike: not "just" a hobby but a means to feel "normal" again (all of them saw me go from dancer, twirler, teacher, choreographer to a person on crutches, not even able to walk by myself. They understand it hurt a lot to loose all that without me telling them) and regain some of the freedom I lost. But they understand even better my bike is my way to fight as a LiveSTRONG Leader for the 28 million affected by cancer. Losing my strength will hinder me doing what I am most passionate about: go out and raise awareness and raise funds. It stopped me from raising funds for my Challenge but also hinders me in earning the extra cash to pay for my flight and stay this year. And all of them have been so understanding and supportive in finding ways to make up for lost time and time yet to be lost. recovery will be long and hard but that is not the point: I did that before and will do it again. It is the feeling I have people surrounding me that understand, try to find a solution with me and support me and cheer me on to reach the so important 20 minute mark. They make it possible for me to do my work, do my LiveSTRONG volunteer shifts and maybe even get to Austin again. I am the luckiest person in the world for having them.

The two reasons I chose LIVESTRONG

Today I had surgery on my ankle so I can continue to ride my bike and train for the LIVESTRONG Challenge in Austin in October. This operation will be followed by another one on my knee next week.
Before “part two” of the surgery today I sat down with my surgeon, who remembered me coming in, almost 11 years ago now.

On December 2nd 1999 I was the victim of a hit and run accident. My right leg was completely shattered from hip to ankle.

At that point no one knew how extensive the damage would prove to be. As we waited for the results of X-rays and more X-rays my surgeon saw I had a copy of “Ït’s Not About the Bike” with me (I was actually shopping for a copy when the accident happened).

We started talking about the book and the amazing performance of the man writing it, Lance Armstrong. I had always been an avid cyclist and loved to watch races. I watched this young American win his World Championship at the youngest age ever. I was shocked and saddened by the press conference in which he announced to the world he was diagnosed with cancer. Being no stranger to that (nine of my own family members have been affected by cancer) I was sure it was the last time we had seen him race. But that’s not what happened, is it?

Earlier in 1999 Lance won his first Tour de France after surviving cancer and fighting his way back to the peloton, which had been extremely difficult. I admired him for his courage and cheered him on when he won.

So on the day my world totally fell apart my surgeon and I talked about Lance, his cancer, his recovery and his amazing achievement.

Soon after the results of he X-rays came back it became very clear I would never, ever walk again. The best possible result would leave me on crutches; the worst would have me lose my leg. In the days that followed I had to come to terms with not only not being able to walk anymore but also the prospect of multiple surgeries and an even longer rehabilitation.

Coming to terms with not being able to walk, depending on crutches or a perhaps a wheelchair for the rest of my life – possibly even losing my leg --was devastating for me. I finished the high school of performing arts summa cum laude and was about to turn my hobby into a living. I was a very talented twirler, dancer, teacher and member of the jury panel of national and international twirl- and showband competitions. My life revolved around dance and in a moment my world, and everything I was hoping for, evaporated. It disappeared in front of my eyes. As my leg shattered, so did my dreams.

My doctor understood. Instead of amputating he proposed an experimental surgery that would put a frame on the shattered inside of the leg. It would take five hours of daily exercises for the rest of my life to keep my leg and I could learn to walk again on crutches. The doctor reminded me of the amazing achievement of Lance and said I should take his example to try and work my own “miracle”.

I kept “It’s Not About the Bike” by my bedside and my doctor put his picture up at my bed and in the room where I had daily rehabilitation. Lance’s story inspired me to work hard and never give up. He sure inspired me to do MY best. Since then, I’ve had many surgeries. These will continue and at this time I can walk with crutches. I still have a picture of Lance on my whiteboard and when the exercises are very painful or I just can’t walk and need to rely on a wheelchair he inspires me as he has inspired millions to do the same in their fight against cancer.

In 2008 I got the chance to “repay” Lance for his inspiration when he announced his return to pro-cycling to help spread the LIVESTRONG message globally. I jumped at the chance to become a Local LIVESTRONG Leader for two reasons: their “boss” had kept me on my feet (literally) for many years and I was passionate about the fight against cancer since it hit my family so hard. I needed an opportunity to make a difference, no matter how small. I love the message of LIVESTRONG, I totally agree with their motto: cancer doesn’t know nationalities and doesn’t stop at borders, so I joined. This is when I decided to try and do the LIVESTRONG Challenge in Austin, despite all odds.

Everyone told me I wouldn’t be able to physically accomplish this. Lance’s example showed me otherwise. He made an impressive comeback. So I pleaded with my doctor to let me try and with the help of a lot of people I started training. An incredible LIVESTRONG family grew to support and encourage me.

I joined forces with two great other Dutch LIVESTRONG leaders, Karen and Manfred in NL4LIVESTRONG and we are working hard to make LIVESTRONG a household name here in The Netherlands as well and in doing so fight the disease we detest so much. I have seen LIVESTRONG grow to a big movement in the last couple of years, it has become more than “just “Lance and that is a good thing. We need to fight cancer with everything we have and LIVESTRONG should not depend on one man.

But I differ from many people in one way. I don’t believe Lance used illegal, performance enhancing drugs. He isn’t a doper. I don’t think anyone who has endured cancer treatment would ever put anything harmful in his body to win a bike race. Lance Armstrong has always seemed like the kind of man that wouldn’t even enjoy a victory if he hadn’t won it by hard work and by kicking everyone’s butt on his own merit. He is a man who has helped millions of others LIVE because he gave them the hope, courage and example of HOW to fight cancer.

I think he deserves to have the millions he inspired stand behind him .At the very, very least, he deserves my most sincere thank you. Lance Armstrong gave me a leg to stand on. Literally. I owe him for the courage to take my life back .I will always support him for who he is.

THANK YOU LANCE !

Is it worth it?

Today I had to go to work in my wheelchair. I usually manage to avoid that, the only times I have to is right after surgery and even than I sometimes manage to do crutches instead. Today walking wasn't an option since the weekend had been very hard on my leg. Worked the usual shifts voluntering for LiveStrong on Friday and trained afterwards.
Saturdaymorning I had a lot of "runnig" around to do for our LiveSTRONg booths: bought three party tents for my team mates and myself and decided to complete my own by finding tables to put in them and lettering to put on the tent. That required more walking than I anticipated. Had to hurry to get groceries before driving to Amsterdam for a meeting with a lovely lady from the Dutch Cancer Institute/ Anthony van Leeuwehoek hospital, Pelagia de Wildt. She was a very passionate lady who told us a lot about the Institute and the hospital. Very good to hear the hospital is internationally seen as one of the best hospitals for cancer research and treatment. Karen and Manfred (my NL4LiveSTRONG teammates)and me had a small meeting of our own after that to discuss and plan LiveSTRONG Day. After that I drove back. Driving to Amsterdam is actuallty more than I can handle, so I had to stop twice on the way up and twice on the way down. Rode my bike for an hour afterwards and was totally exhausted after that. Made sure my LiveSTRONG event kit was ready for Sunday and went to bed. Sunday I rode 80 km for LiveSTRONG, so we could have a booth at the finish line. Took me three hours to complete the course and stood in the booth with my niece the rest of the day. All of that combined made it impossible for me to walk today and I had to get into that wheelchair this morning, whether I liked it or not (and I didn't). Needed to take my laptop into work and lots of papers for the first meeting of the day. I tried to figure out how to bring all that and lunch down to the car in one run. As I arrived at the meeting I was told it was relocated to another building. But as I got there I saw the doors where too small to get in without hurting my hands. To top it off we had to relocated half way through the meeting again.After I got back to my own office I got asked at least 4 times why I was in the chair and I explained. Everytime the next question was "is all that LiveSTRONG stuff worth all this"? I didn't have to think twice and said YES!!!
I got to meet extraordinary people during my voluntering shifts and hope my being there made their day a bit better. I told them, as I always do, the inspiring stories from my fellow LiveSTRONG Leaders and they help. That evening during my training ride I received message that a very nice man donated an amazing amount to my LSC, after donating to Blue Wonder and making an earlier donation to my Challenge as well. I never had the pleasure of meeting this kind soul but somehow the little I can do for LiveSTRONG makes him think this deserves encouragement. I am very grateful for his friendship. On saturday I had the pleasure of knowing the booth we will have at the passing of the Tour de France might make Lance proud when he passes it and knowing we wil reach a lot of people and tell them about the great job LiveSTRONG is doing is making me happy already. To top it off we met a great lady doing an amazing job and we might be doing some work together and I learned a lot again. Sunday we had at least 100 people visiting our booth and many of them donated to the cause. Not as much as fellow LiveSTRONG Leaders in the US make, but we always have to explain why the money also can go to a US charity so I'm proud of the donations we got. Besides that I have to admit I'm a bit proud I managed to do he 80 km ride within a reasonable amount of time (did miss my LiveSTRONG cycling outfit though). So YES, eventhough I had to be in the wheelchair today and probably will be in it tomorrow and only could do a 30 minute ride today "all that LiveSTRONG stuff is sure worth it"!

LIVESTRONG Manifesto - 60 second PSA

This is why for me it is about the (LiveStrong) bike

Honest mistake

Yesterday my physician and physical therapist came over for my scheduled testing. Every couple of weeks they come and see if I can still up the training for the LiveSTRONG Challenge in Austin. As far as I knew I stuck to my schedule that they gave me. Little did I know I misread it and overdid it with riding outdoors on Blue Wonder2. As they explained, riding outdoors, in the wind and on uneven soil, is putting a heavier load on the leg and shoulder. It was an honest mistake on my part but I damaged both leg and shoulder doing it. I ignored the increasing pain because I thought that was inevitable with the longer hours and it always subsided pretty soon (in my honest opinion). My dear friend Jody wrote me and told me that sometimes it’s not about training hard but training smart. She advised me to develop a training plan that would allow me to continue training without injury. She gave me a huge compliment for what I accomplished so far, picking me up as she always does (and giving me way too much credit, as she always does as well). I am going to tell you the same I told her.

Today I sat down with my physio the make another training schedule that slowly ups the time I ride outdoors. I’m still aiming for the 100 mile but am realistic enough to know that it MIGHT not be possible. Not giving up yet though. I knew on forehand it was going to cause more pain but it is worth it, but I'm not trying (and willing) to increase the damage to the leg and the shoulder, so I am being careful. I really didn’t know the schedule was built on riding indoors not outdoors and doing it to the max would make me overdo it. As Jody asked me if my doctor was too conservative in my opinion I told her he IS too conservative, always has been: as they suggested the procedure they did on my leg (involving the 5 hours exercise a day) he thought it might keep me on crutches for 2 or 3 years. He didn’t think I would stick to the regime so long and be able to withstand the pain as long as I have. I always think of Lance saying Pain is temporary, quitting lasts forever and the last 2 years of all you have been through and I’m sure I can keep doing the exercise for the rest of my life. So, since my doc was already surprised I’m still walking, he should know I would ride that bike to the maximum I was allowed to.

I AM coming to Austin and am so looking forward to spending time with Jody, her husband and all my LiveSTrong friends before that. I’m counting the days. Riding with Jody and all other friends will be the highlight of my Challenge, and Jody is right: I aim for the 100 but every mile we do will be a accomplishment and I will be so happy to share it with her and all of you!

I didn't mean to be stubborn to a point that I would forget my health and scared to death my doc will tell me I have to stop riding my bike because for me, it is about the (liveSTRONG) bike.

My first entry

This is my first blog entry ever and I want to explain why I felt the need to do a blog to start with later on. I will fill you in on how I came to be preparing for a 100 mile bikeride in Austin, Texas in October. But for now I just want to share with you the sensation I had this afternoon riding my bike, Blue Wonder2, fully enjoying the sun and beautiful surroundings of my hometown.

For someone who never has encountered setbacks or injury it is very hard to understand how a disability totally changes your life. I was the victim of a hit and run 11 years ago and that left me on crutches. For a person that made a part of her living out of teaching dance and twirl, that was about the worst thing that could happen to me. Stubborn as I am I refused to give up teaching completely but I went back to teaching one night a week instead of five and had to give up judging comptitions. I will get back to how I came to be on a bike this afternoon, but have to explain why it IS about the bike for me.

I keep my bike, Blue Wonder2, with me in the spare bedroom in my appartment, situated on the second floor, for two reasons. One, this beautiful bike is a gift from my LiveStrong and Cyclist Combating Cancer family and the worst thing that could happen to me is that it would get stolen or damaged. The other reason is that I need to hold on to something walking the galery and going down in the elevator to the groundfloor. I can´t take my crutches down because where would I leave them after I get on my bike?
And that is the moment the miracle starts for me, the second I get on my bike! As soon as I get on the bike and start pedalling I am FREE! No longer a disabled person, but just like anybody else who loves to ride the bike. I am still working on my average speed (not high enough) and the distance I need to cover but I ride the bike like everybody else. Today I rode for three hours, longer as I mend to do and longer as I am allowed to do but the feeling I had being out there, in the sun, enjoying the sensation of speed and not having to depend on anything else but my own body was truly breathtaking. Fellow cyclist passing me greet me and see me as one of them, not the cripple how needs to be treated with care, but just another avid cyclist. And this sensations last up to the second I arrive back home and have to get off the bike.... Than my feet literally touch the ground again.