can't get back what's lost, but can live large "as is"

 a friend who had a double mastectomy found this necklace for herself and encouraged me to get one too.

I used to be a traveler. Before my health plummeted in 1997, I'd ridden camels in Egypt, played field hockey in New Zealand, hiked mountains in Ecuador, swam with sea lions in the Galapagos, backpacked through more than a few European countries, and spent seven weeks driving cross-country. They were all amazing trips, but that cross-country trek stands out as one of the most contented times of my life. Then, not long after, I got sick. The kind of chronic sick that's stuck around for the last fourteen years.

Among my longer list of health issues, there are a few that make travel particularly daunting and unappetizing, including chronic fatigue, eustachian tube dysfunction that causes ear / dizziness discomfort on a daily basis, a propensity for gnarly motion sickness, and maybe the greatest challenge of all when it comes to travel: my significant chemical sensitivity. 

Finding scent-free lodging that doesn't make my lungs inflame is monumentally difficult.

To be honest, since I've dealt with so much physical discomfort for so long, I'm practically phobic of being in my body. So I've set up a home comfort zone, scared to stray too far. Since 1997 travel has pretty much been restricted to the bare minimum: infrequent visits to see family. I'm really grateful that my tribe is supportive and accommodating, opening windows on cold days, postponing painting, removing scented stuff, etc. in preparation for a visit from me. 
Jeff and me on a family vacation in the Galapagos

For so many years, I've been enveloped in shame about my poor health and special needs. I've hated being that person with those strange requests. Year after year I just kept hoping and praying that this was the year my health turned around, falling into depression each time it wasn't, and wrestling with a maddening sense of powerlessness. And in the meantime, I stubbornly refused to consider the alternative: accepting my limitations once and for all, and building a new life around them. I guess I was scared that if I stopped fighting, and gave in, that I'd get swallowed whole.

Over the past year, I've been making some last-ditch extreme efforts to get healthy. I think there have been some baby step gains, but the results have been far from proportional to the effort. So I've decided it's time. Time to accept that I am someone with chronic health struggles, and that the myriad physical struggles may never go away. There's something profoundly liberating about playing with acceptance. It's giving me permission to stop fighting, grieve what I've lost, and finally start living my life again, within the limitations I've been rebelling against for so long. And first on the list, by some facing-the-crap-out-of-my-fears miracle, I've decided that I want to travel again, no matter what it takes. If only I could convey how profoundly surprising, scary, and exciting this decision feels.

I've got over a decade of lost living to make up for. So I've set a radical new goal for myself: to leave the Boston winter behind for two months every year, traveling to the warmer parts of our big country. Winter is a miserable, interminable season for me. I hate it and so does my body. In the last month I've been able to spend more time outside, and the difference in my state of mind is radical. The warm sun is like intravenous medicine for me, bringing comfort to a body that's often uncomfortable and hope to a mind that loses track of it every winter. Each time I've shared news of my winter departure with a friend, the response sounds like this: "Thank god. I've been telling you to do this for years. It's brilliant!" I guess my seasonal affective struggle is pretty see-through.  
Pre-bunjee jump in New Zealand!

The practical, fearful, responsible part of me comes up with a million reasons why this plan is absurd. One of the more frequent internal protests sounds like this: "people just don't take two months off every year. It's not what's done. What will people think?". But then I remember a few important facts: The flip side of my no-baby grief is that I am a free bird. I also run my own business which means I get to set the vacation policies. Plus, one of my unyielding commitments is learning to stop running my life by what other people think. And most importantly, I'm a big girl now and can do whatever the fuck I want.

So, how is this chemically sensitive chick going to find comfy lodging all over the US in the winter? This is where I really take my power back. And think way outside the box. My brother Kevin is a talented, creative woodworker and problem solver. With his help, I aspire to build a tiny chemical-free travel trailer, hopefully of the delectable, efficient Teardrop Trailer variety. When Boston is drowning in snow, Arlo and I will be towing our retro-inspired sleeping quarters into Austin, Santa Fe, Sedona, San Diego, or wherever else the sun beckons us.

Next weekend, Kevin and I are heading to the Adirondacks (notice the travel!) for an annual East Coast gathering of Teardrop Tailer enthusiasts, to learn from those who've built their own mini trailers. Right now we're still in the research phase. It's not even clear yet if we'll be able to find lightweight alternative materials to create our chemical-free trailer. And if it's not feasible, then I'll hatch Plan B. I've already got some ideas brewing. 
On my last cross-country trip in 1996 Jeff joined me for part of the trip. He took this picture of me in the Grand Tetons. 

Years of hard personal work are finally starting to unblock a brain that's been clogged with shame about all my special needs and limitations, and grief for the healthy, athletic, and playful person I used to be. So it only took fourteen years to let go of my former healthier self, but I'm finally ready to try accepting me "as is". When I was calling around, trying to find an unsmelly-sounding bed and breakfast for our trip to the Adirondacks, I noticed a little miracle taking place. When I explained my chemical sensitivity, I didn't feel apologetic or embarrassed. Just clear about what I needed and wanted.


  1. AnonymousJune 05, 2011

    I am so EXCITED for this plan!! I am thrilled in advance for all the adventures you will have on the road. I also love the pictures on the post. Thanks for writing, as usual, a gift to read your latest thoughts.
    Love, Anna

  2. congratulations on your acceptance/freedom discovery!!!

    this new take on living sounds so-o-o-o-o very healthy in and of itself!!!

    i applaud you, and travel with you in my heart!

    love you.

  3. just perfect. as is. sending a perfume free hug your way!

  4. I need to get one of those necklaces.

    I'm a so excited for you. Thank you for sharing your journey.

  5. AnonymousJune 06, 2011

    The necklace says it all... where can I buy one?

  6. What synchronicity. I also live with chronic health issues that have taken away my life in the last, oh 6 years and am about to do my first trip of choice/pleasure. I've decided I simply have to figure out how to make it work and be up front about my limitations and needs. You're right. It's so liberating! And I'm so excited to be getting out in the world again.

    I look forward to hearing about your trailer ideas. (I have neurological auto-immune stuff and it basically renders me chemically sensitive. Well, sensitive to everything. But I likely have many of the same considerations you do.)

    Oh! And I also live in Boston. Cheers!

  7. AnonymousJune 06, 2011

    Wonderful freeing thoughts!!!
    Terrific future plans.
    Awesome acceptance.
    Incredible courage!!!
    Character building for damn sure:-)
    Moocho hugs, SHF

  8. AnonymousJune 06, 2011

    I'm so glad you got your As Is! I've needed mine just about every day lately...I want your readers to know that Joanne Rossman sells them in her wonderful shop at 6 Birch St in Roslindale. She told me an interesting story of how the artists began to make the necklaces. Breathe is my other other favorite and I always enjoy seeing Joanne.
    I love your plans for going forward!!

  9. AnonymousJune 06, 2011

    SO proud of you!
    Keep on keepin' on...hope you find some wonderfully fresh air in the Adirondacks.

  10. AnonymousJune 06, 2011

    Kyle..go you, really. Another idea--you have a particular gift of a therapeutic and aesthetic spin on home organizing and transformation. I bet if you use FB, your website, and your network, you could line up gigs in the places you go! Just an idea. And when are you starting to see clients again locally?--Sue Fendrick

  11. Thank you guys for all the sweet and supportive messages - they feel so good to read and it's so nurturing to feel your enthusiasm behind me!

    To Allison in Boston, I'm excited to hear you're taking a trip too! By the way, I'd love to connect offline if you'd ever like to. You can email me: kylefreestyle@gmail.com

    In terms of the necklace, you'll see that my friend got hers at the shop in Roslindale, MA. (I actually ordered mine online but they're not selling them there anymore)

    Sue, that's a brilliant idea and one that I'll keep in mind! So smart.


  12. Dear Kyle,

    I can't tell you how many times I've said something along the lines of "I hate to be a squeaky wheel, but..."

    I share the discomfort of being THAT GIRL, as well as your realization that if that girl's gonna move, she's gotta stake her claim. I love knowing your wheel is rolling down the road, squeaking and turning and paving new grooves for us all.

    Can't tell you how much I love this idea and how much I admire your dedication to outsmarting yourself, continually, one step at a time, in thought and in action.

    Alexa xxoo

  13. AnonymousJune 13, 2011

    I'm so excited for you! Love that last part in your post about just stating what you need and not apologizing for it.

    I am really scent sensitive as well - not as much as you, but I can understand why that would make it hard to stay places. Good for you for dreaming up a creative way around that. If anyone can make that no-off-gassing teardrop trailer happen, you can!

    Amy W.

  14. HI Kyle,

    I really related to a lot of what you talked about and I wish you the best of luck in your quest.

    I have MCS and need to go to Boston in a month. Do you know of any place I could stay that can accommodate the type of requests that I would have?