The life you live after you become a patient is totally different than the one you lived before the shit hit the fan. It is complex and difficult to explain and like most subjective things, everyone has a different experience. I now know about the unspoken understanding between patients and how endearing it is to share and balance on the same common thread. Then there is the flip side. The unfortunate ignorance and mind numbing absurdity of what people say, most of whom should know better.
There is no rule book. But having one would be so much easier. A little flyer you could hand out to the masses or post on your forehead; talking points of what not to do. Truth be told, aside from the leveling blow that came with my diagnosis, the blows that caused the greatest harm came from stupidity.
So, with a deep breath and a count to 10, let me lay it out for you. Please, do not think it is appropriate to tell me what research hospital you think I should go to get my care, what Doctor you think I should see, what course of treatment I should get, how lucky I am, how I should take care of myself, what books and articles I should read, that you understand what I am going through or compare having a brain tumor to how sick you were with the flu. Please do not tell me what you think I should do. So, let me be clear. If I never asked for your advice in the first place, I think that should have been your first hint that I am not interested in your opinion.
What really worked were the people who lent support by listening, listening, listening; did not pretend to understand or compare; knew it was ok that they had no idea what to say or do; asked what was needed and wanted; asked questions and respected that I did not always want to talk; respected the unknowns that come with this and the magnitude and permanence of the experience.
I say now, like our mothers did when we were little, treat people like you would like to be treated. Respect that what is best for me may be different than what is best for you. So I dare you to put on a new pair of shoes, walk around a little, break them in, and think about what it is like to be me. I can assure you that if you really did take that long walk in my new shoes, you would think before you speak and stop offering unsolicited advice.
GREY MATTER LIFE 