Write about something ordinary that’s inspiring to you, something simple, perhaps overlooked, that fuels your activism. Write about the things you couldn’t live without – list 10 things you need or love most.
I’m not sure about anyone else, but I felt – and some times, still do – feel incredibly lonely ‘suffering’ with my Crohn’s. It as if once I get a hold on things, some thing comes along and knocks me sideward and upset the balance. And its taken, and does take, alot of strength to remain in control and keep the balance tipped slightly in my favour. That undeniable, overwhelming feeling of being far too out of my own depth, out of my own comfort zone cuts deep and hard. It brings me to tears some days. And the thing that’s most disconcerting of all is how small that one thing is that can tip the balance over. Getting a tablet stuck in my tooth has been one lately. It can be as simple as being unable to bend down at work without needing help to get back off the floor. Its being unable to make it upstairs at home without my back, knees or chest giving me pain. It is simple things, not the fact that I’ve had to endure scopes or scans and deal with constant fatigue and irritability.. no, it’s the simplest things.
Being lonely led me to my blog.
It led me to write and write until my fingers hurt and my wrists were sore. I wrote about work, about hospital, about taste and smell memories, about symptoms, about side effects, about plans, about failed relationships and friendship, everything I could because I was so lonely. I needed to get all of my words out of my full head and out onto paper. If not for others to read (that came slowly and much later) but for my own peace of mind. Gosh, did I need some of that in the beginning. I’ve always needed it, I needed it before I got sick and its never really let up. I’ve never shied away from writing or indeed talking about my thoughts. Some of the more funny ones I share with people I know and who would ‘appreciate’ those humourous moments, but the serious ones, I sort of ‘save’ for this blog. For telling the real story. Not that the funny pieces aren’t real, they are, but they are more coping mechanisms (thank you counselling) for dealing with the serious, invisibility of Crohn’s or indeed any invisible condition. It is all real, it is all happening, and it is happening to me.
So, I know what it means to want to write. I know because I know how full one’s head can get with thoughts, both good and bad, the thoughts that drive you mad in your awake hours and the dark thoughts that stop you from sleeping. The ones that make you question your treatment and your future and your life beyond this constant, irritating pain you’re in. You dream and think about the light at the end of the tunnel and sometimes it moves further away and you think more. You hide. You fight all the good feelings you’ve had and dwell on the bad and they take hold. Boy, do they take hold quickly and without warning. It is a deep hole to get out of. My own loneliness is what inspires me to share and open myself up to everyone else.
On the surface, I am honest. I’ve always been open and welcoming; ever since that register came into my room with medical students, I’ve let anyone and everyone who wanted to talk to me or ask questions, to do so. Because, even though I didn’t know it at the time, it was the best way to ‘raise awareness’. It breaks down barriers and people see the real aspects of what having Crohn’s means. I don’t want to hide. I want to help.
My desire to help and need to not feel isolated and lonely helps me write.
It sounds so simple to say that sentence but I know it’s much more than that. So much more.