No matter if you are a trained scientist or the average person, you will have no doubt have heard of Albert Einstein and quite possibly his theory of relativity. While I am not asking you to study it, put very simply, Einstein explained a theory or how ‘time’ was relative and what this meant with respect to gravity and the speed of light.
Special relativity says that every person has their own time. One person’s clock says something different from another person’s clock. The reason a person’s time can be different from another’s is because of time dilation.
What is my point? Well… I started to think that my own perception of time has very much changed since getting sick. How time passes to me is very different from the rest of the healthy world.
In the time that it has taken me to shower and dress, the rest of the world has finished half a days work (2-3 hours lost). In the time that it takes me recover from a dose of weekly injections the rest of the world is enjoying their weekend (a week lost). In the time it takes for me to trial a new med to see if my body is showing signs of responding, some people have been through an entire pregnancy and given birth. (9 months gone). In the time that it takes me to get to see a new specialist and do scans and blood tests for them, a year has passed and countless holidays, birthdays, weddings, celebrations, graduations etc.
In the time that I have been ‘medically retired’ and unable to work or do basic things without assistance, children have grown, friends have changed jobs, people have moved on. I am still here and struggling with the same things.
I do notice the passing of time when I see the seasons change or when I look in the mirror and see signs of aging, but apart from these visual cues it is one big time-blur for me. I don’t / can’t plan beyond today and tomorrow may be completely different than I could have ever dreamed. My years are no longer numbers (ie 2010 or 2014) but “the year I was diagnosed with this disease, or the year I lost my ability to work, or the year another disease was diagnosed and joined the list”… and so on
Time, for human beings, is relative to you ability to experience it and enjoy it. If you can not predict, plan, interact, change, move, dream, have a physical and independent existence, then time has an entirely different meaning. For those of us in these situations then we are outside the normal rules of time. We are the ones that time, and Mr Einstein, has forgotten.
So how can we measure time? I am trying to retrain the way I measure time for my own purposes. With milestones which are outside the norm for others. They become, “the time that it takes to ride out a flare/relapse”, “The year I got to enjoy my birthday “(or my partners birthday), “The year I was proud of how I coped with the challenges I had”, “The year I met some important fellow long-term fighters that made me feel understood and accepted”, “The year I wanted to help advocate for other”. This is my version of time. No matter how long it takes according to the outside world. No matter how much others have changed, grown older, had families, left the country, retired etc. My measure of time is very much relative to my disease activity and the abilities I have in each moment. I haven’t worked out how to measure time in any other away; with all due respect to Albert Einstein.