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.

The only constant

Summer is over.  Maybe astronomically speaking it’s not, but it is.  When you close your eyes on August 31, warm windy days and bathing suits and beach towels and eating outside are all packed away by summer faeries and pushed to the back of the closet.  When you open your eyes on September 1, it is fall.

I had an amazing summer.  I could never have imagined that I would have a summer like this again.  I went swimming in the ocean and went to a water park and got sunburnt and walked around in the sunshine. I worked a lot and took the train and ate solid food and exercised.  I still have mast cell disease and it will never go away and no, my GI tract does not work well.  But I feel better in a lot of ways.  I feel better than I thought I would ever feel again.

Last week was a difficult week for me.  I have been pushing it the last few weeks, trying to do more than I probably should.  I started feeling gross again, burny hot skin, really bad nausea, more GI trouble than usual.  I started needing to sleep a lot longer.  It was so defeating.

I crawled into bed one day and lay awake, too tired to sleep, reliving the last several months.  I was scared.  I was scared that this was over.  I was scared that these three months were all I was going to get.  I was scared because it felt like I was finally living again and losing that would be too painful.  Because I was finally entertaining the thought that I could go back to school and travel and have fun without risking ending up in the hospital.

Last Friday, I realized I had a fever.  I was sick because I had a cold or something.  It hadn’t even crossed my mind that it was anything other than mast cell disease.  I slept most of this weekend and am getting better.

It only took a few days for my dreams to turn from school and travelling back to a stable accommodating job with good insurance.  You know.  My fall back dream.  The dream that I will retain the means to treat my myriad health issues and live independently in a clean, safe place.  That dream.  It sounds silly and narrow to people who have never been sick but let me tell you, it’s not silly to me.  Even when I am feeling better, even when I think I could do things I put aside long ago, even when I am embarrassed to admit it, this is my dream.  This is the dream that needs to come true for any other dream to be realized.

I like my life.  I have a great job.  I have an apartment I can afford in a convenient location.  I have a great support system.  I receive excellent health care.  I can walk my dogs at night.  I can pay my bills.  I am lucky.  I am so lucky.  And it feels wrong to risk losing all of these things to pursue another dream that could prevent me from getting the care I need.

So I push these thoughts aside and feel grateful for all that I have.  I focus on living the life I have now and try not to rock the boat.  I don’t make any changes.

There is this idea that by doing nothing, we can preserve our lives just the way they are.  That if we don’t change, we are guaranteeing the future provided by steadily travelling this same road.

It doesn’t work that way.  It never did.  Everything changes.  The only constant is you.

Yesterday I found out about some changes at work that will directly affect me and how I continue to do my job.  Maybe not in a bad way.  I went back to my desk and cried for a few minutes because I’m a crier and I get very attached to people.  Then I got up and got lunch and went back to work.  I was sad and anxious but also a little relieved and excited.

I don’t know the name of this feeling.  But I do know that I could choose to stay here in my little apartment with my job that I love close to my family and friends and doctors.  I could make that choice and it could all change anyway.

And I could make the choice to give all of this up and I could find myself without healthcare or money or a home.  Or I could find that I give it all up and succeed.

It feels like the stakes keep getting higher and higher.   But that doesn’t mean I shouldn’t try.