Sunday, June 6, 2010

The waiting place

One of my favorite books is 'Oh, the Places You'll Go' by Dr. Seuss.

My friend Dorothy gave me this book before I left on an adventurous trip to New Zealand back in '93.

What a fun book. Oh, the places I've gone... and the places I've yet to see... The book has advice for life's ups and downs.

It's that book title that inspired the name of my blog.

The path of testing and treatment for CCSVI has and will take me to many places, both literally and figuratively.

Right now, I find myself in

'The Waiting Place...

...for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or the waiting around for a Yes or No...'
It goes on, and here's what I'm really waiting for:

'Somehow you'll escape
all that waiting and staying
You'll find the bright places
where Boom Bands are playing.'

--Dr. Seuss, 'Oh, the Places You'll Go'

Yes, the place that the Boom Bands are playing. That, in my mind, is what I'll hear after treatment for CCSVI. Certainly the Boom Bands play when one is liberated, right? Or so I hope.

And yet, I'm in the Waiting Place both by geography and choice.

I want to be treated for CCSVI locally. No one, that I'm aware of, is treating locally. I'm in touch with a few doctors and am hoping someone will start treating here soon.

Then there's the part of me that is waiting by choice. I have many fears. Re-stenosis. Stents. Clots. Getting worse. There are so many people feeling better after having their veins open. However, this is still an experimental treatment, and I'm having to figure out just how much of a risk taker I am. Where is my comfort level? What's going on with my MS? How long can I wait? Where am I emotionally? What can I handle? What am I willing to put my friends and loved ones through? There are so many questions in the waiting place.

I've been mulling this over for days and trying to figure out how to put it in words.

I've learned to follow my gut instinct. While my emotions may try to take over, I need to balance them with the logical side of me that does the 'pros and cons' analysis.

I had an email from Euromedic the other day - Dr. Simka's group in Poland. I had sent an email months ago. They still had me on the list, and were wondering if I was still interested. I didn't hesitate in my reply. 'Please remove me from your list. I'm waiting for a treatment option that is closer to home.' I'm on other lists, but they're not close to home either. I'll have to wait as my name comes up to see how I feel.

So, I wait... and I'll know when the time is right for me.

To all of you pioneers who have been treated both here and abroad, a heartfelt thank you for pushing ahead and helping to figure this out. I do believe that this will be a big discovery in the disease that we know today as MS.

And, I do believe, that one day I'll hear the 'Boom Bands' that mean liberation and hopefully a loosening of the grip that MS has on me... when the time is right for me.


  1. Pam, I hear echoes of Jill's situation in what you wrote. We are waiting with you. You are not alone.

  2. Thanks, Larry. I appreciate that. It makes the waiting place easier!