Gearing up for Progress... or Failure

It's funny how someone sends you the right thing at the right time, so often. I bit off more than I can possibly chew this week, without a doubt. Still struggling with C. diff, and still not able to spend a lot of time on the computer, etc, I agreed to a leadership position with the Scleroderma Foundation, Greater San Diego Chapter. I am trying to arrange our Education Day on June 18 (please come!!!) and have great aspirations and dreams of success. These were somewhat dampened at my visit with Dr. Furst this week when he cautioned me that starting a new event like this is going to take time. Expect 30 people or so, he said, and I cringed inside. All this work for 30 people? Wouldn't that feel like failure?

And then my wonderful friend, Sarah, sent out a little link on Facebook to a story about a man who started a nonprofit in Rhode Island meant to foster creativity. An audience member at a recent talk asked him what the best way is to go about that. And he answered:

So much of our existence is mediated. We're getting billions of messages every day telling us what we should wear, what we should eat, what we should drive, how we should look, who we should date, you know, whatever, and you come to AS220 and someone starts playing a guitar solo, and they fail.
And they start again.
That's human.
We could all identify with that.
It's amazing.
Okay?
And it's empowering to us to have that experience and make that connection. As opposed to being fed perfection. Something we cannot identify with. That's humbling - not humbling, it's, it's, it's, demoralizing -- you know? Because we can never live up to those expectations. So we keep buying more, to try to achieve these expectations that are false.
So I think [the answer is] creating environments where people feel safe to fail, and other people have the opportunity to experience that.

So, it's given me pause, these messages that I have been gently getting this week. I can't always expect perfection and will try to be satisfied with progress, slow and steady. And I will try to see my many failures in this new light.

The (Kick)Boxer

In the clearing stands a boxer
And a fighter by his trade
And he carries a reminder
Of every glove that laid him down
Or cut him 'till he cried out
In his anger and his shame
"I am leaving, I am leaving"
But the fighter still remains

-Paul Simon

As 2011 begins, I am reminded of the importance of the fight. I know that everyone has causes near and dear to their hearts, so this isn't just about scleroderma. But, today I found myself thinking about my friends who have lost their fight against this disease, and I just wanted to acknowledge their fight and their impact, in the hope that the blows they threw will collectively result in a knockout in the not too distant future.

My new year's goal is to become a better fighter. I am going to become more active with the Scleroderma Foundation now that the bulk of my treatment is behind me. I have Bonnie as my muse. :) Today is her birthday, so she's on my mind, too.

Unfortunately, my main fight will be delayed by the warm up act: a (hopefully) brief third round against C. Diff. I knew this was coming, so it's no surprise, and quick action from my doctor has hopefully staved off the worst of it this time.

And my fight will enjoy many interruptions of the best kind, if 2011 goes my way. We head to the desert to watch the boys play tennis again this weekend, and hope to hit plenty of horse shows in the year ahead, too! But, I am looking forward to focusing much of my attention and time on the fight... that is after I find my brain and my ambition, both of which seemed to have taken a much needed (?) hiatus in 2010. For the record, it was my brain that made me type "much needed" in the prior sentence. When it acts, it acts on its own these days.

Happy Happy!

Just a little note of gratitude for all of the wonderful people in my life. :) Best wishes for a wonderful and healthy 2011.

Merry Christmas, My Friends!

It's the most wonderful time of the year!

I hope everyone is having a wonderful holiday season. I feel a great sense of renewal this year, celebrating my first Christmas with my new immune system. :)

Steve arranged a little birthday celebration for me (see pic), reserving a private room at my favorite restaurant so that I could be with my close friends and family. It was such a fun evening, and we could just relax and chat for hours.

I am planning a fun gathering for Christmas, as well. I admit it's hard to get it all together, but that's true for everyone, and I am so grateful that I am able to try! Can't wait! Almost ready...

Last thing to do is build a small dock out front so that arriving guests will be able to "park" despite all of this rain. :)

Going Dutch!

Steve has paid his dues with me in so many ways, but perhaps none so great as riding in the hunters.  For the past 3 years (since I was so rudely removed from tennis!), he has diligently taken riding lessons so we could once again share in sport.  Dressed in his coat and tie, he has successfully competed in the hunter classes at the horse shows, stealing only a brief yearning glance now and then at all the OTHER men riding the big jumpers (in regular shirts!) in the grass field.

Now Steve's time has come.  We've gone Dutch!  We purchased Alexander, a 14 year old Dutch Warmblood jumper who had become a bit homeless after the death of his owner last year.  His circumstances and ours aligned just perfectly, and we are a two horse family.  :)

I have been riding Xander as well as Atlas, and having a great time.  My scleroderma does interfere with my riding, and poor Xander is now "bitted up" like my good old Atlas in a stronger port-style bit.  Because I am not able to close my fingers on the reins, I need more control with a strong bit in the horses' mouths.  I tried one day to ride Xander in the jumper field, but my endurance is not there yet.  I am still quite short of breath and need short courses and frequent breaks.

However, just when I was feeling sorry for myself and feeling like I wasn't making progress, I happened to send a video of myself on the new horse along to my doctors in Chicago.  I email with them quite a bit, as I get my labs drawn here and communicate results back to them, so I attached the video on a lark.  I was super surprised to hear back right away--they were quite impressed!  Dr. Burt is hoping to use the video in an upcoming presentation on stem cell transplants.  :)  I made a short version for him, which you can view above, and I hope it helps to inspire hope in others with this disease.  It really felt great to know that I was actually ahead of schedule.

Except on my holiday cards.  :)