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Find an advocate in your time of need

Twenty-three years after my paralyzing stroke, I had the opportunity to reunite with one of the doctors in the Intensive Care Unit (ICU). 

Dr. Kolodney and I met for lunch last week and reminisced about my ordeal of seventy days in ICU fighting for my life.  He talked about his experience and told me it was his first encounter with someone suffering from Locked-in Syndrome. (If you are a new reader, “locked-in” means you are completely paralyzed, unable to move a finger or toe or even blink, perhaps even unable to breathe on your own).

It was a chance for me to personally thank him (now that I can speak) for being my advocate – my personal angel. He shrugged it off modestly, “Every doctor should spend time in hospital as a patient, so they understand how badly off they can be.”

Dr Kolodney was a lung specialist who had been called in to deal with my breathing issues. The problem was so severe with the stroke they had inserted a trachea tube to keep me alive.

He was the first doctor to believe in my chances of recovery, and the only one to listen to my husband (I had a million to one chance of survival. Other doctors thought my husband was insane to insist on my right to live). My husband was a trial attorney so they couldn’t conveniently ignore him, though!

Every patient needs an advocate who is willing to stand up and fight for them.  And we must do our part.  It is important that our advocate needs to understand our needs, our desires, to live, to get better. So, get to know your doctor and establish a good relationship.

Not every patient has an attorney as an advocate, but I did; and with the appearance of Dr. Kolodney on the stage at this dramatic point in my life – I now had an invincible team.  They were invincible because they believed in me and insisted on my survival. Remember, it’s the squeaky wheel that gets the grease!  I was mute, I couldn’t even squeak. They squeaked for me!

I vividly recall the day he stood patiently by my bedside watching as I slowly communicated by blinking out on the alphabet chart, “Will I die?”

“Will – I – die?” the doctor slowly read out loud my spelled out words. He took my paralyzed hand (I could not respond, but I could feel his warm reassuring grip). “No, you are not going to die. Just do not give up.”

Dr. Kolodney had taken time to speak with my husband, yes; and he also listened. They became partners fighting for my right to life. They were determined that I survived this catastrophic stroke and received the rehabilitation I desperately needed to do more than just survive – to succeed as a viable person; to return to life as a wife, mother, and soon an advocate for others like myself.

The doctor’s compassion, skill and belief made all the difference in my recovery. Without the help of a lawyer and a doctor working together, my recovery outcome would have been very different. I would likely not be writing this to you today, or speaking around the country my message of encouragement, hope – and dogged persistence in focusing on what you can do, not what you can’t. The odds of making any significant recovery were less than one-in-a-million, but I was blessed with an incredible “Dynamic Duo” fighting on the outside, while I was fighting on the inside to survive.

When you or your loved one is in a hospital, your odds for recovery will greatly improve when you find an advocate who will fight for you when you cannot.

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