One of my friends recently said to me “I don’t know how you live with that (dysautonomia and ehlers danlos syndrome) and stay happy.” It got me thinking. How do I live with this and stay happy? Am I happy? Is there a secret recipe? What in the fuck am I doing with myself?

Well, I can’t say I have all the answers. Nor can I say I’m always happy (who can?). What I can say is that I have plenty of peace between the meltdowns and lots of joyful moments with those I love between all the sad ones, which makes life much happier. Another thing is this is all I’ve ever really known. Sure, it’s more intense these days (my theory - hormonal changes), but I’ve always had to rest more than others, manage dizzy spells and blackouts, deal with pain, and navigate my way through comprehension and communication issues. So in some ways, I’m lucky that this is the only life I’ve known because I don’t know what “normal” feels like. Some with this condition develop it much later in life and I can only imagine the shock that would be.

So, how do I stay happy? The truth is I don’t. I have many down days. I feel depressed at times and you know what? I allow it. When I feel down, I feel down. I cry. I sleep. I go deep. I feel every single thing I’m feeling. I question my life. I mourn my unfulfilled dreams. I get pissed. I feel sorry for myself. I go there.. wherever “there” is.

I let myself loathe IV therapy. I reach out for the girl who used to love hot yoga and a long run after a day at work. I feel the isolation of no longer having a career and colleagues to interact with on the daily. I question how it’s possible to need such enormous amounts of sleep and still. feel. tired. I let myself miss the days of bread with dinner, late nights on the dance floor, and one too many vodka cranberries. I allow myself to be pissed about having to live by so many fucking rules!

Then, as it passes, I allow the fog to clear. However long that takes, I’m there for it. I wait. I watch. I listen. I witness the new emerging. I remember the good in my life. I remember the sexy, the fun, the light. I begin to feel the support around me. I come back to my self. Yes, two words, my self. The self deep within me. The one that is my soul, my essence, my truth. My divine goddess. My love. I come back to her. I hear her whispers. I listen as she beckons me toward the light, joy, and love. I walk toward her voice, slowly at first, then faster. I allow her to guide me, following her internal wisdom, her sense of purpose. She keeps me going. She shows me all I have to be happy about. She brings me back to the light.

It is then that I can laugh again, loving myself and those around me. Suddenly remembering that while my life is often dysautonomia, dysautonomia is not my life. My life is my partner and son, friends and family. My life is fireside conversations and yoga barefoot in the backyard. My life is soccer with Jagman and date nights with Kevin. My life is delicious food and a red wine treat. My life is sunlight on my skin and a dip in the water. My life is walking in the snow and holding hands with my man. My life is so much more than this chronic condition. My life is beautiful.

That is how I seem so happy, even in the midst of chaos. I stay present for the “good” and the “bad,” the joy and the sorrow. I ride each wave as if it is the only one and eventually I wash back ashore where I find rest and warmth before being taken back out, into the deep, once again.

I don’t know how long this will last, how many good days I will have between the bad. I often wonder if I’ll ever recover and feel as good as I did before the crash. The truth is I don’t know. So, I’ll take one day at a time, navigating each moment, feeling the happy and the sad. This is life with dysautonomia. This is life with ehlers danlos syndrome.