Since I started this blog, I’ve been approached by several people who are living a story similar to mine, hiding their health in plain sight. We are all involved in life, in challenging jobs or parenting and the volunteer work that accompanies it. We are the first people asked to take on a project or to work a little later or to fix just this final problem. And we all say yes, over and over until we can’t do it anymore.

When we finally say no, we worry that we look lazy or uninterested or self-involved or maybe even crazy, when really, we are physically incapable of continuing.

These people all asked for a voice, for someone to try and show the world what it looks like to function in a body that sometimes works against itself. “Functioning” looks different in each area of my life, whether that is parenting or work or daily activity or navigating the maze that is our medical system. I’ll touch on each in greater depth over the next couple weeks.

Today is an overview and I’ll tell you what I can.

 

My life is lived in a combination of numbers, of hours and minutes and moments and choices.

 

It is the ticking of the clock.

 

It is watching the minutes and hours pass by, waiting to be able to stand. Waiting to be comfortable enough to fall asleep. Waiting for my body to relax, for the imagery or the breathing or the distraction or the medication to do enough for me to continue on.

 

It is the translation of a 1-10 scale, one that I am often asked to repeat, when I’d rather forget it exists.

 

Three or four is a great day for a run.

Five means the gym and an article written, a deadline met.

At six, I can drive my kids to school and yoga can calm my body down.

Seven and my focus turns inward. I take the wrong turn, the wrong exit, because my energy is absorbed by breathing…..standing…..driving.

I double over at eight, unlikely to stop the trajectory of pain. At eight, I better get home, and quickly.

Nine means I’m stuck in a child’s chair in a classroom, or a couch at a friend’s house or the floor of the clinic at work, reliant on….someone……to get me home if I haven’t made it there yet.

At ten I hear ambulance sirens.

 

It is hours and afternoons and days lost.

 

It is a constant calculus, a determination that yes, I can keep walking for the next 20 minutes, that I can keep standing for the next three hours, that I can still drive and cook and write for the next five. Sometimes it is the knowledge that I can’t move for the next five hours. Or ten hours. Or two days. It’s learning that there is nothing to fix and nothing to change and nothing to do but wait.

 

It is 21 medications, two surgeries and a dozen euphemistically named procedures.

 

It is medication trials that run on, sometimes for a day or two, sometimes for a month or two, always bringing new side effects but never the desired effect. It is “no really, this won’t make you feel groggy/feel sick/feel tired…..it did? Sometimes it does.”

 

It is 13 medical practitioners and countless nurses, assistants and schedulers.

 

It is the amazing doctors, nurses, physical therapists and others, people who have helped when they could and offered support when they couldn’t. It is three women in three specialties who have smoothed my transition more than they know, and more than I can say, by their skill and grace and humanity.

But it is also egos and assumptions, with occasional doctors who are more concerned with what they think should happen than what actually works, with hearing their own voices instead of mine.

It is understanding and misunderstanding and learning to be my own best advocate. It is believing that sometimes the best course of action is no action, and then convincing myself to search again for answers and options.

 

It is placing value and managing expectations, accepting that doing some is greater than doing none or all.

 

It is learning that I can’t do everything, many things or most things. I can pick three-areas I devote my energy with varying success. The rest has purposely fallen away. It is choosing to stay active, to nurture relationships and to keep learning. It’s not a perfect science, and there are always days I fall short. It is deciding to write an article but skip a PTA event, no matter how often I am asked. Admitting I had to do less gave me the space to find my center, to find the eye in the midst of the tornado and to move forward.

 

It is choosing to enjoy the moment, even if the moment is harder to come by.

 

People in Seattle appreciate the summer in a way I’ve never seen in other locales. After the general absence of the sun for nine months, we embrace every chance to run, hike, bike, sunbathe, swim, walk, shop, eat or lounge outdoors. We revel in the perfect temperatures and the abundance of activities. This is the mindset I’ve adopted after six years of being uncertain how tomorrow will fall. I have learned to find joy in the success of those I love, and I appreciate my own adventures even more.