Saturday, February 07, 2015

I Am Blessed (but PLEASE don’t tell me so)

Rocky Mountain Stroke Survivor
February 23, 2013

As I consider all the ways this could have gone so much worse, I know that I am blessed.  My husband went so far as to say, “Someday we’re going to call this the stroke God sent because so much good will come of it.”  I almost smacked him.  With wifely love and respect, of course.

I am blessed that I didn’t die.

I am blessed that I was diagnosed correctly and have enough resources to find the appropriate treatments for myself and a primary care doctor who cheerfully orders whatever I’ve asked for.  (“Hi, it’s me again.  Can I have an order for PT?”  “Hi, it’s me again.  I need a referral to a new neurologist.”  “Hi, it’s me again…”)

I am blessed that I am still able to perform all my activities of daily living independently.  (I am also blessed that I got a new cute, short haircut out of the deal to make it easier.)

I am blessed that I am able to live at home with my family.

I am blessed that I do not have any disabilities so severe that they scare my children or prevent me from being able to enjoy mothering them.

I am blessed that my husband is willing to go to the effort of caretaking that allows me to live a semblance of a normal life.

I am blessed that friends and family have supported us through this time.  (Thanks guys!)

I am blessed that my pain is improving, that I didn’t suffer any of the worst side effects from this type of stroke, and that my prognosis is pretty good.

I am blessed that I am not only still able to work in my chosen career, but have the opportunity because of the stroke to spend my working hours seeing families without insurance or who for other reasons are unable to obtain good medical care.

I am blessed that my state has a program to provide confidential care to doctors so that I am able to get full cognitive and occupational evaluation to make sure I am safe to practice without the mere fact of needing the evaluation endangering my career.

At the same time, I am heartily sick of being told how “lucky” or “blessed” I am by other people.  Or being told that I should be grateful.  It is infuriating to be told to be grateful when I am 31 years old with a stroke.  I am continually dizzy and exhausted and often in pain.  My three year old gets mad at me for knocking over towers when I try to play blocks with him.  My baby can’t understand why all of a sudden I spend most of my time sitting or sleeping.  My husband has become my caretaker.  I had to resign from the practice where I’ve been since I was a medical student.  I can’t drive across town to a friend’s house because the drive makes me so sick that I can’t handle visiting.  I’m not sure how we’re going to pay the bills.

I want to scream when people look at me and see that I look okay and then tell me, “You are so lucky to be doing so well.”  They have no idea how well or not well I’m actually doing.  At first I felt like I had to be polite and agree, “Yes, I am blessed.”  I’ve started replying in vague non-agreement, “Well, we’ll see” or “Yes, I am doing about as well as can be expected under the circumstances.

Brain injuries are often invisible, but that doesn’t mean that they are benign.  A brain injury is devastating.

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