People say I’m brave when they see me in my wheelchair. That can be frustrating. I’m not brave just because I happen to have a disability. There are, however, instances in my life where I have had to find a great deal of courage from somewhere to get me through. This year I have made the most difficult decision I’ve ever had to face and, as a result, surgery for the amputation of my right leg is scheduled very shortly. You can call me brave now.
The idea that many have that it takes bravery and courage just to live in my body says a lot about how people still consider disability. Living with a disability is almost certainly many times less awful than people might imagine. If people were honest with themselves, I suspect that disability is scary to them because they don’t know how they would cope if it happened to them, and it so easily could.
I must now concede though, having thought about it, I may have brushed the label off too insistently and with too little thought as to what it really means to be brave. Certainly, I think it would be foolish of me not to accept that it has taken a lot of courage to get to where I am and that, for the foreseeable future, I will be required to be very brave indeed to get through the amputation. It is the most scared I’ve ever been. A person can be terrified and brave. That much I have learnt.
Electing to have my leg amputated on the back of 10 years of chronic wounds and infections has been a terrifying thing. It started out as a confusing thing for quite a while too as I tried to figure out what the ‘right answer’ was. If a decision is very difficult because you are trying to choose the right answer, it might just mean there isn’t one, so you have to go with what makes the most sense with the information you have. In that case, anything a person decides to do or not, is an act of bravery in the face of uncertainty.
My choices essentially came down to a decision between non-action or reaction. To do nothing would mean I would continue to suffer, I choose that word advisedly, from infections. Eventually, one of those infections would probably ‘get the better of me’, shall we say. Seems like an easy decision, when I put it that way.
The thing is though, when you’ve lived under certain conditions for long enough, even if the circumstances are far from ideal, there is comfort in certainty. Living, as I am, with the ever increasing risk of infection and the potential for sepsis looming large, chronic illness has become a new normal for me. I hesitate to say, I’ve become comfortable with my circumstances to an extent. While my expectations for quality of life have become limited by circumstance, I largely know what to expect if I do nothing. While the decision to do nothing is a more comfortable position, so long as I don’t think about it too much, it is also a decision void of hope and with a limited future.
I have made the decision to have my right leg amputated. I am choosing to live in hope. I don’t know how things are going to turn out for me. I really don’t know what to expect but I am hopeful. I’m starting to think of a better future. I haven’t done that in 10 years. Yes, you can call me brave now.