Over the years of dealing with doctors, some have made me feel the need to (overly) explain why and how I developed Hydrocephalus.
Almost as if to justify it…
Granted it’s normal to be asked this at a first consult with a new doctor to give them the context and history they need, I’m not talking about these times.
Some have literally told me that they don’t believe I have this condition, increasing my need to “prove” that I in fact do. It has also, on occasion, caused some huge doubt in my own mind as well and downright confusion when the next one I see, confirms that I do in fact have it.
Also, having my memory affected and second-guessing what I’m feeling at various stages on this journey doesn’t help with my confusion. Because most times…Surely I must be wrong and them right, especially when my body bounces back after an episode and reaffirms nothing is wrong…right?
I’ll admit it’s left me feeling as if having Hydrocephalus somehow qualifies you entry into an elitist club. Might I add, at no point have I ever felt the need to willingly be a part of this “invisible” circle. No person would willingly want that for themselves. Sure, the connections I’ve made have been awesome and in most cases a blessing, especially when I’ve needed sanity and for someone else to carry the burden. The weird thing about it is the internal sigh of relief I give, once validated that I actually do have it.
Some days I truly wish there was an “unsubscribe” link we could click and opt out of the spam/junk that this condition renders unto its host…
I wish also, with all my heart, Hydrocephalus never existed. That babies/children/adults didn’t have to endure one of THE most nerve wrecking surgeries known to man. Brain surgery was, is and never will be fun to face…but, we soldier on and go into the battle field. Prepared or not, that’s another story.
If I had to find a silver lining in it all for myself, it would be the relationships I’ve formed with like-minded people.
Now that part, I feel truly blessed to have.