Those of us who live with the reality of hiv all live in very different worlds. We can be found in tiny rural villages and in big cities. Name a suburb anywhere in the world and we will be there. From slums to penthouses, we are everywhere.
It's hardly surprising then that we often find it hard to see eye to eye on things when we are looking, living and speaking from our own perspectives. When it comes to the reality of living with this virus, we are the experts of our own experience and our own experience only. We catch glimpses of how other people live but we can never fully understand anyone else's reality. Even so, there are some basic things that we all have in common and uncertainty is one of them.
One difficult aspect of this disease is the way its course reveals itself to us moment by moment, day to day, season to season and blood test to blood test. Some of us are living well with hiv, others are not so lucky - but none of us can ever be quite sure of where we stand. A hitherto manageable infection can turn nasty overnight. We can be at death's door in springtime and doing well by fall. We can pay for our lives one year and be without income and destitute the next.
We exist at the mercy and on the whims of a virus, of doctors and nurses, of politicians and corporations. We never know how someone will react to our unwanted companion. We live with uncertainty every day. While there is no certainty for anyone in this world, those of us with this virus have that uncertainty in sharp focus. It follows us like a shadow. It hides around corners and it lives in the dark, inaccessible recesses of mind and body.
Whether or not we publicly acknowledge it, it is there. Even the most active, positive-thinking person among us would confess to feeling the cold, misty tendrils of hiv and uncertainty that wend their way through our lives. It is the strangle-hold of these tendrils that positive thinking helps to keep at bay. It can be exhausting work keeping the light directly overhead so that no shadows may fall, knowing that just beyond the light the tendrils are waiting.
We struggle to find words to adequately describe this life. Manageable. Chronic. Terminal. These are just a few of the terms on the table and give us yet more uncertainty. We don't know into which terminology we will fall until we are falling, until we have taken that pill, battled that OI, lost that job, fought that depression. We hope and pray the term manageable applies to us to us personally and feel a failure, or failed, if it does not. We feel failed by the drug companies who promised us mountains but gave us buffalo humps. We feel failed by our own bodies and by each other. We feel failed by the uncertainty of it all.
It is because of this all pervasive uncertainty that I doubt we will ever collectively agree on the terminology to describe our lives with this illness. For myself, I try to balance hope with pragmatism. So, for today anyway, I choose to say that having an hiv infection is having a living death sentence. I'm living to the best of my abilities while the uncertain tendrils of death coil expectantly in the shadows. I hope I can keep the light overhead for a long time to come but living with the uncertainty is a daily challenge.