My life has changed completely since my diagnoses of Rheumatoid Arthritis twelve years ago. Looking back there are a number of things I have learned and I would like to share some of them with you:
I will never play professional football for Ajax Amsterdam. This was a hard lesson. Setting aside the facts that I have no talent, lack the physique and grace to play the game, I’m in my forties and have trouble kicking the ball in a straight line, I resigned myself to this reality about three years ago. Of course the dreaded disease is entirely at fault for me not being cheered on by 50,000 fans in the Amsterdam Arena on a weekly basis. And boy, are they missing out on something special.
Ask for help. I’m pigheaded. Ask my wife, or rather, don’t. I like to solve and do things myself even when it is clear to everyone around me that I shouldn’t. Even my amazing nine year-old son realises it. You should see the exasperated look on his handsome face when I walk through the supermarket for the third time trying to locate walnut oil or something or other: ‘Daaad, why don’t you just ask someone? Look. there’s someone right over there!’ I’m getting better at asking for help. Opening a jar, asking a parent of a friend of my wonderful son if the play date can take place at their house, things like that. Though I could probably ask for help more often, it’s a learning process I’m in the middle off. (By the way, you may have noticed my not too subtle description of the awesomeness of my boy. I’m sorry to have to break it to all you parents out there, but you are all wrong. I’m sure your offspring is cute an’ all but it is a fact (sort of) that I have the best kid in the world…) Which leads me to:
Deciding to have a kid has humbled me. RA was ravaging through my body when my wife and I decided to go ahead and try fulfil our dream of becoming parents. I was at my worst, no longer at work, in bed most of the day, medication not working as it should, suffering from side-effects. We reasoned that if we could handle this parenting-lark when I’m at my worst, it would only get better. We were right. Don’t get me wrong, there were tough times and sometimes things are far from easy even today. But because both of us backed the decision 100%, having a wonderful son has been more than worth it. It made me appreciate my wife more, not only for carrying and giving birth to our boy, but also for being a great mother while working very hard to provide for us. My son has only known me as a Dad with RA. He does not know any better. As he gets older his understanding of the disease and how it effects me, deepens. It’s a humbling experience that I’m grateful for.
Loved ones empathise with me in ways that I do not realise. I don’t share the degree of discomfort I’m in every day. I find it tedious, monotonous and repetitious. But it doesn’t fool the people close to me. If I have a bad day they can see it in the way (I attempt) to move and they can read it on my face. If I’m silent about it, my wife and son will point it out. They will give me the space I need to get through it and comfort me when I least expect it. And sometimes I’m surprised by what people do. My dear sister-in-law and brother-in-law donated part of the collection at their wedding to the Arthritis Foundation, a gesture that touches me to this day.
Saying no. I still struggle with this. I don’t like to disappoint people, but the truth is that I’m no longer the young budding football-star I once was. I have RA and there are a number of things I can no longer do. My focus is on me and my family. If we are ok, my life is ok. Everything that gets in the way of that, I try to say ‘no’ to. It’s not easy, because sometimes something awesome comes along I find myself saying yes. And then I get in trouble. Another work in progress.
Thank you for your time, take care of yourself and remember to keep passing the open windows.