16 years ago I was a teenager. I was an athlete, participating in all kinds of activities. I didn’t know what I wanted to do with my life, but gardening and dancing was two of my passions. Over a period of two weeks I went from being a normal active teenager to someone who barely could get out of bed. My knee went from normal sized to basketball and it felt like I had a big piece of glass in it whenever I moved. (It might seem like I’m exaggerating here, but I actually measured my knee. Basketball was the correct size.) I was always taught to be strong and to not complain about small stuff, so I didn’t. For me it was just a temporarily swollen knee, something that would take care of itself and therefore nothing to complain about. My uncle eventually forced me to go see a doctor (I was living abroad and I met him when he visited a conference there) and I was soon diagnosed with arthritis. I wasn’t allowed to go to school, let alone to do any kind of sporting activity, and when I was allowed back to school the arthritis had spread so I couldn’t do any physical activities. I went from literally having a sporting activity every day to not doing anything. I survived by continuing to play my instruments, but a few years later the arthritis affected my fingers and I could no longer play music. In addition to that I had a bad reaction to a medicine, was hospitalized for a week, lost my ability to remember what I read, and had to work really hard for months to regain my balance so I could walk again. Everything that I was, everything that defined me was gone. The strong, independent, active, musical, reading person that I was suddenly couldn’t do anything. And I must admit that I lost my ways. Where do you go when everything around you, all the pillars that support your spirit, has collapsed?Five years after my diagnosis I was at a family gathering and out of the blue my uncle remarked “You do complain a lot!”. At that moment my world stopped for a while. I was raised to not complain and I never saw myself as a person who complains at all. I still can’t think about what I can have complained about, but his comment changed the way I saw the world. If he thought I complained so much that he had to remark on it, I have to do something about is since I really don’t want to be a complaining person. From that day I watched everything I said to avoid negative words to leave my mouth. It lead me to look at the world differently because if you are used to complain about most things around you (and I did, it had become my way of talking. I complained about things just to have something to say, to fill the air with words) you look at them critically. Suddenly I had nothing to say – I was looking at the world through negative lenses but insisted on only speaking positive things. I had to change my lenses to positive ones in order to have conversations with other people and it’s the best thing that has happened to me.
I could easily have become one of those people that become their diagnosis. Persons that defines themselves as their disability. After that family gathering I started to say that I had rheumatism instead of saying I was rheumatic. I also started to see all the things I could do and all the things I could be grateful for. I stopped to mourn all the things I no longer could do and I stopped to try to regain my lost abilities. I found new activities that I enjoyed and I started to build a new identity. Slowly I became a whole person again, strong (mentally instead of physically), independent (in most areas), active (but not only physically), musical (enjoying it more than playing it) and reading (audiobooks). I also learned that it’s ok to not be strong all the time, that its ok to ask for help and that being dependent isn’t a bad thing. It wasn’t easy and it didn’t happen overnight, the process of mourning and accepting my diagnosis took seven years, but it did happen and I’m a better person for it.
I just got off the phone with a friend who recently suffered from damaged nerves, resulting in chronic nerve pains. She’s passed the denial phase and is currently seeing how her world is crumbling around her. Without a job to go to and not being able to go to the gym makes her feel worthless as a human being. I know this is a phase, and I tell her that, but at the same time my heart is bleeding for her. I don’t feel sorry for her – that won’t help her and I know that a life changing thing like this can turn out to be a really good thing in the end. But I feel for her and I know exactly what she’s going through. I try to be there for her but at the same time I know that she has to walk through this on her own, there’s nothing I can do for her. I can only tell her that it is a phase and that it will pass eventually but I also know that she won’t hear me, not yet anyway. I just hope that she won’t need seven years to find her worth again.
I can honestly say that I’m grateful for all the things I’ve gone through. It’s been a bumpy ride, but it has made me a better person. I couldn’t follow the easy road in life, a big boulder was put in my way, but it forced me to find my own path in life. I like to think that I would have found my path eventually, but it might have been harder to follow it later in life.