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The "Best Available Vacation"

With Marcia at our alma mater, Amherst College

I was sorry to return home yesterday from our first summer vacation. The Austin weather forecast, predicting 95+ degree temperatures every day for the foreseeable future, is contributing to my regret, but I'm also sad to say goodbye to Don's family and to friends who live too far away. I've decided over the years that an important sign of a good vacation is that I don't want to go home. By those standards, we had a pretty great trip.

 

On the way to the airport for our flight home, we stopped at a café for an early lunch. I challenged Don and the kids, "Name your three favorite things about our trip."

 

To my delight, no one wanted to be limited to three. Ella suggested we think of our favorite activity from every day, which still proved difficult.

 

But despite the fun touristy activities – the Boston Duck Tour, the New England Aquarium, the Yankee Candle Company shop near Amherst, a day on roller coasters at Hershey Park in Pennsylvania (where Don took the kids without me) – the resounding highlights of the trip were the opportunities to reconnect with friends and spend time with Don's family.  

 

Early in the trip, we shared a wonderful evening with three of Don's best friends from MIT. Our kids played with theirs. We ate delicious homemade pizza and salad with greens picked out of the garden. The next night was equally terrific with some of my best friends from college. I'd seen them maybe once in the last 15 years. But we shared great memories and still have common interests and values.

 

After our time in Boston, my very dear friend, Marcia (also from college), joined us for a weekend in Amherst, biking, catching up, and showing off our beautiful Amherst College to my kids. And a few days later, we thoroughly enjoyed our dinner with friends Armando and Jack in Greenwich Village.

 

Of course, spending time last week with Don's mom and his dad, who is thankfully healthy again, left us feeling grateful and loved.

 

Our time with others enhanced our time together as a family.

 

I read a New York Times article about half-way through the trip that resonated with me. It was about the Fear of Better Options. I live with this fear, which may be even more acute because of my MS diagnosis. How long will I be mobile? How long will I have the energy to travel? I want to make THE MOST of the time I have, given the uncertainty of my future.

 

But I also realize that sometimes my insistence on finding the Best Available Option gets in the way of enjoying many other Very Good Options.

 

We did not have the perfect hotel every night. We didn't make it to a hear jazz in New York City or for a family hike in the Amherst Bird Sanctuary. We had some arguments and whiny kids and rainy days. But by meeting up with family and so many friends, and settling for some Very Good Options, we were able to enjoy the Best Available Vacation.

 

Please share your thoughts on how to avoid getting caught up in the Fear of Better Options and how to have a great vacation by leaving a comment below.  

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MS150: Mission Accomplished

With my amazing riding companions - my cousin Bates and friend Cesar - on the "Challenge Route" of the MS150 Day #2 

I feel great today! I am sore and tired, but I accomplished my goal. I rode 168 miles from Houston to Austin on my bike this weekend. I raised over $5600 to fight MS. I bonded with my funny, caring, thoughtful cousin who I've barely seen in the last twenty years, and I made dozens of new friends. I shared my story on the CBS-Austin news: http://cbsaustin.com/news/local/traffic-delays-expected-as-2018-bp-ms-150-kicks-off  And I was proud to speak at the finish line. I've included my speech here. Please share your comments below:

 

What an exhilarating weekend! I am so proud and fortunate to have been a part of it. I didn't know if I'd ever make it through those Bastrop hills, but somehow I did and it is thrilling to be at the finish line. I want to thank the National MS Society, the Tacodeli team who took me in at the last minute, my friends who donated, my family who came out to support me and have been a critical part of my MS journey. Most of all i want to thank my cousin Bates and my new friend Cesar who drove all the way from El Paso to be my cheerleaders and companions on the awesome adventure we had this weekend.

 

I was diagnosed with MS 8 1/2 years ago, and I know that receiving such a diagnosis can be a scary and lonely experience. I didn't know if I'd be able to work or to parent my daughters. I certainly didn't think I'd be able to ride 168 miles from Houston to Austin on a bike! But after riding the MS 150 for the first time, I know I'm not alone and I'm not afraid any more to take on new challenges. Over ten thousand people came out with me this weekend to fight MS, to fund new research, to support people living with MS, many of whom were not able to be here riding with us. I am here, healthy enough to be able to finish this ride, because of my fellow riders and the many many riders who came out to fight MS over the years. I am so grateful to all of you.


Congratulations and thanks for making a difference in my life and the lives of so many others with MS.

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Biking with Gratitude (and My Mom)

On the Southern Walnut Creek Trail with my mom

I'm dizzy after my bike ride today: 40 miles on the Southern Walnut Creek Trail and around Lady Bird Lake with a little time on the road too. Dizziness is my most significant reminder of MS – it was the first major symptom I ever experienced and the annoyance that prompted me to seek out the doctor, who ordered the MRI, that led to my diagnosis.

 

But never mind! Today, my dizziness is overshadowed by gratitude. I am grateful for my mom, who accompanied me on my ride today (she is 71 and had a knee replacement last summer, but is unstoppable on the bike); for the cool, sunny weather (though maybe not so much for the overly exuberant breeze); for a functioning new bike; for my kids, who got themselves up and ready for the day without my help, while I completed my ride; for the support circle of people who helped cart my kids around to activities later today, giving me space to recover and write.

 

When I was out on the trails today, I realized that I am able to ride because of the millions of people who have trained and fundraised for this ride – and similar rides around the country – in the past. The commitment and concern of so many people over the years has enabled the discovery of medications and other treatments that now keep me, and so many others, healthy.

 

I remember hearing that just a couple of decades ago, the medical approach to MS was "diagnose, then adiós," meaning that after confirming a diagnosis of MS, the doctor would say good-bye because nothing else could be done. Back then, it was "5 years to a cane, 10 years to a wheelchair." But now -thanks to new medications, vitamin D, and a healthy lifestyle - 8½ years post-diagnosis, I am training to ride a bike 160 miles from Houston to Austin. Hallelujah!

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MS150: Training Ride Derailed

On a borrowed bike after my new bike broke during MS150 Training Ride #2.

I don't really know what I'm doing. I decided to ride the MS150 – the two-day, 150ish-mile bike ride from Houston to Austin - just two weeks ago. I'm a runner, not a cyclist. And I have MS.

 

I like a good challenge. And this ride, for which I am woefully unprepared, seems like a good challenge in part because I am woefully unprepared.

 

Today my attempts to get prepared backfired: I set out for a long ride with a friend on my brand-new road bike. ("You gotta have a road bike," everyone has advised. My 17-year-old rusty mountain bike wouldn't cut it).

 

Seven miles into the ride, while going down a small bumpy hill, the chain derailed from the chainring on my new bike. (Of course, I didn't know what the chainring was called, but this diagram helped: http://www.jimlangley.net/wrench/bicycleparts.html)  I placed the chain back in its place, only to have it slip out again and again. My friend tried to help, to no avail. Finally, I realized the chainring was so loose that the chain couldn't stay on it, rendering the bike unrideable.

 

We walked back to my friend's house – just a mile away at that point. She lent me an extra bike, and we took a shorter ride - 15 miles or so. Then she drove me to the bike shop for my 6th or 7th visit in two weeks, where they tightened the chainring, and I rode the bike home.  

 

For many with MS or another chronic disease, including me sometimes, it feels like the chain slips off the chainring a lot. I just found out about another friend of a friend with MS today. We are out there, sometimes too uncomfortable or embarrassed to say anything, fearful of losing jobs, friends, opportunities. One in every 750 people.

 

MS can be paralyzing, literally and figuratively. But we have to learn to improvise, to change plans – to take the shorter bike ride – and to reach out for help.

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