Thursday, August 1, 2013

Bright Eyes

Smart young people make me happy.... even when I am seeing them at 7am.

Why was I awake, showered, dressed and there?  Because Dr. Roth asked and I couldn't say no. After all, he's kept my spirits up for the past eighteen months. I can refuse him nothing, even when it means that my dreams are filled with "Oh, no, I've overslept and missed the meeting."  I'm typing this at 3pm and my eyelids are fluttering.  It's hard to type through the yawns.

I spent an afternoon and a morning at the Rehabilitation Institute of Chicago, sharing and being shared. I was evaluated and observed and treated and admired.  I liked the admiration most of all, especially since I was able to send it right back to the professionals who were watching me walk and lift and swing and curl and press. They were impressed with my progress.  I was impressed with their skills.  It was a love fest, in all directions.

It's been thirty-two months since I was perforated.  The numbness is gone, except for a small piece just above my knee.  I can access my abductors and my adductors and my glutes. My toes and ankles are fully integrated pieces of every step... when I remember to include them.  I don't need to protect my hip from the effects of moving; I can swing my arms... when I remember... and twist from the waist.  Who knew that walking started from the shoulders?  Not I, until my physical therapist told me so.

I strode down the hallway I'd lurched down last year, and, when I turned to retrace my steps, Dr. Roth's smile lit up the runway.  He pointed out my frozen arms to the medical student in tow, and I, laughing at myself, showed him that I was, in fact, able to alternate my arms and legs as I moved.  It's just a matter of remembering to do it.   It's not as easy as it sounds.

I've spent nearly three years taking very good care of my repaired hip.  I haven't jumped or run or fallen down.  Not once have I put the surgeon's work in jeopardy.  He would be very proud of the way I've protected his hip. The downside of that is the frozen posture I adopt when I move.  If I don't shake it, it won't hurt.  Even now, when the pain comes only at the end of a long day, it's hard to relax. I've spent so long avoiding the agony that now, when it's (for the most part) gone, I can't get my brain to tell my body to loosen up.

Both the physiatrist and the physical therapist noticed it, commented on it, didn't like it at all. I can do better. That's the best message a patient can receive.

Their confidence in my ability to improve was encapsulated in one sentence.  Dr. Roth told me that he "would be very disappointed if (I) had (my) hip replaced." My hip is not the issue.  I have tissue issues (isn't that a lovely phrase?). I am tight and flaccid and torn, and none of that has anything to do with my acetabula. Replacing my bone with metal won't solve the problem. Rehab will.

Rehab will. That's a powerful statement.  It puts the burden on me, and that's where I want it to be. I like being in control of myself.  I like being responsible for my well-being. I don't relish the thought of surgery, of anesthesia, of dealing with a prosthesis. I hated my IUD, and that was removable. I don't like imagining how I'd feel with a faux joint.  It's nice to know that I don't have to do that.

Little Cuter worried that I was relying on strengthening when the problem was the hip itself. She hurts for me when I wince, she aches when I ache.  She shares my distress over that which I can no longer do, like long hikes or exiting escalators with dignity. Surgery seemed like a simple fix. Replace it and begin walking with a brand new zip in my stride. Would that it were that simple.

According to Dr. Roth and Kelly, PT extraordinaire, I can expect to make progress for many moons to come. They pinpointed the areas which require attention. They scripted a program I can incorporate with the work I am already doing. I may have time for nothing else in my life, but I can get better.

Good news like that is hard to ignore. It's also fun to share.

And so, this morning, I rolled off Not Kathy and Dr. K's wall bed and into my speaking clothes and drove up Michigan Avenue to RIC. It was dark. There was traffic. Drizzle was the weather and overcast was the sky. It was 6:30 in the morning. Retirees don't usually get up that early; I object to setting my alarm on general principles.  But, Dr. Roth had asked me to speak at his Chief's Rounds, and nothing was going to stand in my way.

The Magnusson Auditorium was empty at 6:50 and full at 7:01. I had two friends in the front corner seats, but the rest of the room was filled with medical students and interns and residents. They were there to learn from me. I was there to tell them what it was like to be a patient. Dr. Roth and I sat on fancy, high, red chairs in the front of the room; he likened it to Oprah, and the audience laughed. Then he turned it over to me, and I made them cry.

Telling the story of January 8th never loses its impact. Bullets and children and the woman addressing the crowd should not be mentioned in the same breath, and yet there I was, sharing the joy we felt and the horror that followed.  Their eyes never left my face.

For an hour, I told my story and answered questions and tried to give them the benefit of the wisdom I've accrued during my eleven days as an in-patient and my nearly three years of recovery. Don't imagine that a drugged patient will remember your instructions. Don't assume that everyone understands the medical terminology you use. Remember who the patient was "before" and try to craft a discharge plan that meets her where she is. Even the simplest things, like a portable potty, might not be readily understandable to a family dealing with trauma.

I talked and their eyes were glued to my face.  Each and every one of them was present and paying attention. At 7am, just starting their days, no one was on a cell phone or whispering to a neighbor. No one was napping or staring at the ceiling.  Their eyes were watching me. It gave me hope for the future.

I spoke about PTSD and answered questions that were pointed and pertinent. I shared my fears and my problems and my refusal to be poked and prodded. They laughed, they sighed, and they listened. They watched me walk and diagnosed what they saw.  Their comments told me what needed work. I had no doubt that they thought I could do better. It brought a smile to my face.

At the end, I received a framed certificate.  I love certificates.  I'll be hanging it on the library wall when I get home, and I'll look at it whenever I need a reminder that a roomful of doctors think I will eventually have a fluid gait. They were grateful for my presence; I hope they know that I return the feeling.... in spades.


  1. WOW! That was awesome. Wish I could have been there, but think you did an amazing job articulating it. I love your optimism too. Most people would feel like, "Oh my gosh, I have so much more to do". But you relish it and are up for the task. I do not doubt you have healed so well because of your positive attitude and determination to get better. Half the battle to getting better is one's outlook.

    It's also comforting to know that doctors can really listen and care. I sometimes feel like doctors are so busy trying to get through their patient list that they forget there is a patient and that we sometimes just need encouragement. That can be some of the best medicine.

    LOVED this post today.

    Sending hugs,

    Megan xxx

  2. Hi A/B,

    I would have loved to have heard you speak today, even at 7am! I know I would have cried, too, listening to your speech. Actually, you did make me cry during one of your interviews that you gave in January or maybe it was February, 2011. I am sure you inspired the students immensely! I do not think I have ever "met" someone who is as motivated with her rehabilitation as you are (Besides Gabby Giffords!). If only other patients had the same motivation that you have, the world would be better. As Megan mentioned above, I loved this post and it definitely provided me some inspiration that I needed as I complete my nursing school applications:).

    Maggie from Georgia

  3. YOU will be a fabulous nurse, if for no other reason than you care! Motivation is spurred by my desire to "get my life back." I'm almost there, but the pieces that are missing are those that make my life my own. I will get there.... even if it is taking more time than I would like.


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