I have been counting down the hours. Today was the day I met with My Consultant. I was terrified we would not get on.What if I did not like him? I have envisaged spending a good amount of time over the next few years deeply engaged in discussions about my “care plan”. I had the sense that this was going to be the start of a meaningful relationship. I imagine this must be how it would feel to await the first meeting with a future spouse in an arranged marriage. This man would be so important in my life as my condition develops, or doesn’t develop, or whatever…
So it is fair to say I was terrified. Nervous just doesn’t cut it. This first meeting could shape my perceptions of this condition and its inevitable impact on my life for better or for worse, and irreversibly.
No waiting time. This is good. This WOULD be good but for the fact that I had already pre-planned some breathing exercises and visualizations to do when I first arrived for what I expected to be a long stint in the waiting area. I had also brought an exercise book to begin to jot down my thoughts and feelings (as I am seeming increasingly compelled to do of late – perhaps in the spirit of “capturing” these pivotal and life-changing days and events, as morbidly perverse as that night seem).
So right from the off, I realised I was not in control here. Things were not going to plan. My mission to “get answers” had resulted in a Change To The Schedule. Hmmm.
I walked in and was greeted by the most frank, (to the point of being blunt!), but straightforward conversation I have ever had.
“You have Multiple Sclerosis. You want to know what type? I will do another MRI and see if that gives us any idea, but you might have to just wait and see how it develops. You want to know if you will die? The answer is yes, we all will. You want to know when? I can’t tell you. You want to know if you will end up in a wheelchair? The answer is, I don’t know. You might, you might not. You want to know when you will next have a relapse, and how that will manifest itself? I can’t tell you that either. You are going to have to get used to not knowing what comes next. It will take some getting used to – I get the impression that you are a girl [GIRL! Bless him] who likes to be informed and know what will happen. That will need to change.”
Right then. Ok. I step out of the office and I am none the wiser. All I can say is that I now know that I don’t know, won’t know. The man with all the answers does not exist.
This could take some getting used to. I feel control slipping away…