“Sometimes an old photograph, an old friend, an old letter will remind you that you are not who you once were, for the person who dwelt among them, valued this, chose that, wrote thus, no longer exists.  Without noticing it you have traversed a great distance; the strange has become familiar and the familiar if not strange at least awkward or uncomfortable, an outgrown garment.  And some people travel far more than others.  There are those who receive as birthright an adequate or at least unquestioned sense of self and those who set out to reinvent themselves, for survival or for satisfaction, and travel far.  Some people inherit values and practices as a house they inhabit; some of us have to burn down that house, find our own ground, build from scratch, even as a psychological metamorphosis.  As a cultural metamorphosis the transition is far more dramatic.” (Solnit, Rebecca.  A Field Guide to Getting Lost, pg. 80-81.)

My adult solo traveling began with Greece, Athens and the island of Sifnos.  I’ll never forget my first sighting of the Parthenon and Acropolis lit up against the night sky, and my subsequent wandering in an attempt to get closer, ignoring all the rules about being safe past dark.  Nine days on the island of Sifnos followed, where I meandered through goat pellet riddled fields, and followed miles of dusty road up a mountain to a church perched on its cliff–no weather check, no water (just an overly sweet and very warm chocolate drink in a bottle), and no food (other than a bag of potato crisps).  It was thrilling to be on my own; it was thrilling to let my feet lead.  The contagion of wanderlust set up shop in my cells and bones, and a 9-day trip to Barcelona only 7 months later followed.  I was inspired by Zafón’s The Shadow of the Wind for that one and knew I had to see and experience the city’s architecture and streets for myself.  It didn’t disappoint.  If I had known with any certainty at the time that a different sort of contagion was swirling around in my body, waiting to take hold, I might have become frantic to see more of the world, let my feet do more of the leading.

Six years ago, I was diagnosed with an autoimmune/auto-inflammatory form of arthritis called ankylosing spondylitis (AS), and my world changed overnight.  For a no frills explanation of what this means, there are two parts to the immune the system: the part you are born with (innate), which refers to the auto-inflammatory component of AS; and the part that develops after you are born and are exposed to various things in your environment (acquired).  Research has now shown that there are problems with both parts in AS.

But what is this disease?  It is:

  • primarily an arthritis of the spine, though other joints may (and often do) become involved, and
  • it starts gradually
  • appears between the ages of 17 and 45
  • involves pain and stiffness that lasts for more than 3 months, and is worse in the morning and at night, and is relieved by physical activity
  • can have numerous complications including: scarring of the lung tissue resulting in breathing difficulties; uveitis and iritis, inflammation in different parts of the eye that can cause blindness if not treated; and cardiac complications such as inflammation of the aorta, leaky valves, and arrhythmias
  • the inflammation occurs at entheses, where tendons or ligaments meet bone–in the cycle of inflammation and healing, new bone grows and joints can fuse together
  • There is NO cure.  Treatment is palliative, aimed at reducing pain and symptoms.  And can be very expensive.

I had already been sick for at least 10 years at the time of my diagnosis, but had struggled to find a doctor that would take my symptoms seriously (an experience all too common for women) because nothing showed in my lab work nor the various imaging tests I had done.  Too many rheumatologists still think of AS as a disease only of men, but that’s because the disease often manifests quite differently in women–we don’t show doctors all those things under their microscopes that they want to see, have been trained to see.  In men, the disease starts in the sacroiliac joints, the joints where the spine joins the pelvis; in women, it’s often our neck that first starts to cause us pain and discomfort.

My neck is where mine started.  For years I woke with it stiff and in pain, with headaches.  Another first site of trouble was my knees; and I realize now, my ribs.  These symptoms appeared in my mid-20s; when I was 36, my sacroiliac joints (and my entire spine!), and hips finally joined the game.  My achilles tendons were so swollen on the first appointment I had with the rheumatologist, I could barely walk.  I was referred promptly to physical therapy and spent 6 weeks just getting a treatment called iantophoresis, where electropads filled with anti-inflammatory medication were placed on my Achilles and an electric current delivered the medication directly to them.

Most days I try not to dwell on what I’ve lost as a result of this disease: kayayking.  road cycling. mountain biking. hiking.  gardening and landscaping.  People.  You quickly learn who your friends are when you have ankylosing spondylitis.  You learn to live on the periphery of life, always observing and only occasionally taking part.  This is something I feel most keenly whenever I travel now, seeing others running and moving fast around me.