Great wall

I have always wanted to travel. From a young age, I was fascinated by language and traveling seemed an extension of that, places to hear foreign words and see strange alphabets. When I was 19, while sitting at my desk one night, it occurred to me that there was no reason I couldn’t just save up and go wherever I wanted to. I planned my first trip abroad and spent 26 days in Europe the following summer.

Traveling made me happy in a way that I have never been able to replicate in any other way. Over the next several years, I spent all my money on travel. I didn’t care if I ate the same thing every day or drove a junkbox. Nothing mattered to me like the joy of being in strange, faraway places. I started planning my magnum opus: a nine month trip around the world that took me through six continents. It was slated for January 2011.

In 2009, I lost a lot of my hearing. I spent all of the money I had saved for the trip on medical expenses, much in an effort to stop my rapid march towards deafness. I lost my hearing anyway. I haven’t travelled out of the US since 2010.

For a while, I went through the motions, even when I was clearly in no shape, financially or physically, to go anywhere. I bought guidebooks, priced flights and drew maps of places I hoped to visit. I printed out pictures of every country in the world and glued them to cardstock. I hung them in my apartment, passive encouragement that I would once again be strong enough to see some of them.

Then my health declined rapidly and I was in massive pain and puking constantly and unable to go to the bathroom. I stopped everything. I couldn’t fly anywhere anyway, so there was really no point. I couldn’t even think about it. I was so tired and the pain was so bad and I was scared. My illness was this huge wall around my life and I couldn’t even try to climb out. I could only hope not to be buried by it.

Last year, I decided that it was time to try again. I flew to Seattle with my best friend, emboldened by my ready IV access and growing restlessness. I took a few other domestic trips, Colorado, Florida, California. My health was mostly fine and when it wasn’t, I knew how to manage it with medication to stay safe. Every new trip gave me confidence that I could be independent in travel, provided I had a predetermined, safe place to stay and eat, and someone to help me if I got sick. The majority of my luggage was medication and medical supplies and I didn’t care.

In less than a month, I will be flying to Asia and fulfilling a lifelong dream of seeing the Great Wall of China. It has been logistically complicated, with medical notes and forms and notaries and translations and all the doctors. I will be taking a sixteen hour direct flight from Boston to Hong Kong, where I will spend some time with a dear friend before we travel to Beijing and then the Great Wall.

I feel it again. And even though I’m scared, I am happy.

Happiness is a kind of fighting. It is a way of saying that maybe today was miserable and so were a lot of yesterdays but maybe tomorrow will be different. It is the refusal to be subjugated by pain and fear and uncertainty. It is the memory of joy and the knowledge that even if you don’t believe it, you could again. It is the way memories catch light in your mind, a technicolor feeling that goes on forever. It is the only fight that matters.

Some things are best viewed not as they are, but in the light of a prior incarnation and the hope that it could reascend to this splendor once again. It took years, but I climbed out of the high walled prison of this disease and next month, on the other side of the world, I will put my hands on another Great Wall.

7 Responses

  1. Elizabeth October 10, 2015 / 1:35 am

    This is such an amazing entry, it makes me well up because it reminds me so much of myself. I’ve yearned to travel and learned French and Arabic, planned trips, educated myself, and I fantasized being immersed in culture, art, history, religion…I too tried to ignore the mounting severity of this beast of an illness and continued working toward my BA in History and Islamic Studies and an eventual PhD, planning for a thesis I would never write…It feels like a death in some ways to lose so much of your former self. I am slowly tapping back into the person I once was, finding new ways to encapsulate myself in a world all my own, even if it only encompasses a 1200 square foot house and short wheelchair bound forays to doctors and pharmacies, I will experience that jubilation again, just maybe in a different way. Thank you for writing this blog, its been so inspiring and abundantly educational.

  2. Sean-michael October 10, 2015 / 2:26 am

    This gives me hope. I love travel. I miss it. I’ve been doing local travel or to CA and we are considering maybe a trip to Oregon next year. This gives me hope that maybe some day we could make it further too

  3. Lori October 10, 2015 / 3:14 pm

    So glad you get to take that trip. Did you lose your hearing as part of MCAD? I’ve had a lot of hearing loss in my left ear in the past year for an unknown reason.

    • Lisa Klimas October 17, 2015 / 11:11 pm

      I lost it before I was diagnosed. I have autoimmune diseases also and I was diagnosed with autoimmune inner ear disease, which has no markers and is a clinical diagnosis. However, once diagnosed, I found that hearing loss isn’t unusual for mast cell patients, and neither are auditory processing issues. I have both true hearing loss and auditory processing delays.

    • Lisa Klimas October 17, 2015 / 11:11 pm

      Also, Ehlers Danlos can also cause hearing loss.

  4. Suzanne October 10, 2015 / 3:53 pm

    You’re a roll model to so many. Enjoy your release to your dreams.

  5. Lucy October 10, 2015 / 11:23 pm

    We will Be anxious to hear all about it.

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