“Diseases are only rare until you know someone with that disease” – Amy Dockser Marcus
I first read this some eight years ago in an article in The Wall Street Journal, but I only understood what it meant when I suddenly found my life turned upside down.
Six months ago, I was diagnosed with myelofibrosis – a rare type of blood cancer where the bone marrow cells, which are responsible for producing the different cells of the blood, die off and are replaced by fibrous tissue.
These fibers disrupt the body’s normal production of red blood cells (which carry oxygen to all organs of the body); white blood cells (which protect the body against invading diseases); and platelets (which help the body form clots when we are injured to stop bleeding and allow our bodies to heal).
Before this, I never knew what myelofibrosis was. My quick reading on my phone as I drove back after getting my results from the clinic showed that it is a fatal, rare disease that usually hits people over 60, with an expected lifespan of two to seven years after discovery. It very rarely affects young people. Every new piece of information I read came as a shock to me – I was in my early 30s, I was part of a small and very loving family, and I realized I had an untreatable type of cancer.
I spent several weeks in a very, very dark place. I was confused, desperate and had nowhere to turn. The only thing that kept me going was support from my partner who stayed strong to help me through this confusion – even though it was confusing for them as well. (more…)
I’ve done everything humanly possible to do this right. Yet it doesn’t seem to be working. Today, or tomorrow, or in the coming few days, I might have to make a very difficult decision that will leave me frustrated, to say the least. But it won’t be the end of the world.
I’ve said this now many times: I find running particularly challenging. I’ve engaged in many types of physical activity in the past few years. I go to the gym and workout. I hike. I cycle. I dive. I’ve climbed tall mountains and cycled across a continent. I’ve had to train very hard to do both. I’ve had to endure pain, cold, wet, mud, heat and disappointment in my activities as well. But for some reason, at least in my head, none of that compares to the challenge of running and trying to be good at it.
It is specifically because I find running so difficult that I decided to challenge myself and train to run a marathon. I started running about six years ago. So I’m not exactly a beginner runner. I incorporated running into my general training regime to keep fit and healthy.
But I only started trying to become a stronger runner about three years ago. My husband encouraged me to sign up for a 10km race. I had never done anything of the sort. I wasn’t sure I could even run that far. With some training, I did. Then I ran another. And another. They were all very challenging. I almost gave up on my second 10km race. I was the third or fourth from last to cross the finish line in that race. I could have given up then. Instead, I decided that I needed to figure out how to become a better and faster runner. (more…)