Uncharted.

Original Email Date- September 16, 2011

Uncharted.  There is a great artist, Sara Bareilles, that I’ve been listening to when I sit out on the patio at Bryn Mawr Rehab during my “rest” time.  Here’s how the song starts, and it just pulls you in from there.. “No words, My tears won’t make any room for more, And it don’t hurt like anything I’ve ever felt before, this is no broken heart, No familiar scars, This territory goes uncharted.”

I had heard her CDs before, but sitting there, dealing with GBS made me listen to the song differently.  It’s about how she has a life changing obstacle in front of her, and nothing that she has done before has prepared her for this new path.  How I could relate to her at this time in my life.  It became more of a mantra for me, and a song that I felt very deeply.

However, when I got enough strength after my usually ass-kicking from my therapists, I started to sit outside to get some fresh air, and think. I would sit in my wheelchair, in the sun, if there was any, and reflect on my day. I would stick my headphones in my ears, turn on the GBS mix that I created, and think. I pulled out my pink journal, and would write down my thoughts for the day. What was I thinking? How was I feeling? Was today a good day? What made me laugh today?

That last question always evoked a smile from me, because not a day that went by at BMR did I not laugh. I think a smile can heal you. When you smile, others smile back. I would roll into the Therapy Room, big smile, ready to start the day. I would smile at everyone waiting to start their treatment, and they would smile back. Before you know it, everyone is smiling. That’s what made the therapy room such a happy place to be. Therapists who love their job, and patients who wanted to get better (for the most part anyway). And laughter- I truly believe that laughter really is the best medicine.

You’ll see pictures of me on Facebook– I really am that happy in those pictures.  People have said “How can you be so upbeat when you can’t walk yet?”  and I would tell them, because I and my therapists believe I will walk again, and I’m going to appreciate it even more when I can walk.  Oh, and my therapists were actually really funny.  On my last day of therapy, my OT Aimee, had me carrying a golf ball on a spoon and walking with one crutch. She wanted to see if I could balance it while walking around the therapy room.  I asked her if Dizzy Bat was next on the agenda (ala Enduro and Heart Lake Relay).  Another favorite moment was my PT Joe (a U of Scranton Grad) sporting a King’s College shirt for my last therapy session.  Such a good sport.  I think even he started to realize that King’s really does trump Scranton, at every level 🙂  Having such fun and thoughtful therapists was a big upside.  They saw me through some of my darkest days, and they brought out the best in me.

So, I started to cherish my quiet time on that patio.  During parts of the day, the patio would be filled with therapists and patients working on walking outside; families filtering in to spend quality time with their loved ones who may be far away from home; or people using their downtime, like me, just trying to feel a sense of normalcy in whatever crazy situation they were in.  I met some of my closest patient friends out on that patio.  The professional who fell one night and broke her neck; a Mother who was getting ready for her daughter’s wedding who woke up one day unable to walk;  the school teacher who was paralyzed after being hit by the wave when he was walking out of the ocean; the hairdresser who traveled 2 hours to BMR to heal from her knee replacements.  These strangers became the people I learned to confide in at my time in BMR.  What a motley crew we were- I was the youngest of the group by decades, but what we all had in common was this– in a moment, all of our lives changed.  We were each learning how to find a “new normal” in our lives.  Since we all would sit on that patio and talk, we became friends, even confidants, to each other.

I would not allow myself to think about tomorrow, because tomorrow seemed too overwhelming.  That’s what they taught me at BMR- take it one day at a time.  Tomorrow will come, and we’ll make sure that you are ready. That’s quite a feat for a Type A personality who has perfected the Art of Multitasking.  Now, you want me to just think about one thing– learning to walk?  I gave in, and began to only focus on today.

Sara Bareilles says “Compare where you are to where you want to be, and you’ll get no where.”  Isn’t that the truth?  I’ve learned not to compare Suzy with GBS to Suzy pre-GBS.  I may never get back to that person, but I believe as a result of GBS, I’ve become a better person.

My time at BMR Inpatient is over, but I continue to get my outpatient treatment there.  I don’t think I’m ready to leave the place that has helped me to walk again.  The place that gave me the confidence to believe in myself again.  Saying goodbye to the people at BMR was hard- from Pat, Angela and the nurses, to Lorraine and Gerri my favorite aides, to Eileen in the dining room who always made a fresh pot of coffee for me, to the entire therapy teams who believed in me and laughed along with me.

I’m home in North Wales for the time being, getting used to getting around on my own now.  Even the simplest things like coming downstairs or making a sandwich are so much harder now.  Luckily, Mom and Dad went to Costco, so there is more food that anyone could imagine at 745 West Prospect 🙂  and JP has given me some control over the remote, so I’m not stuck watching George Lopez or WWE Monday Night Raw.  I’m just watching the Phillies and NCIS marathons— who doesn’t love Mark Harmon??

More pictures are coming to facebook, so be sure that we’re friends!  If I have missed anyone, please forward this email along.  If this is your first email from me, please scroll down so you can see how far I’ve progressed.

Writing has been therapeutic for me, and has helped me face each day of this scary ordeal.  I hope that my updates give you the sense of happiness and peace that it has given me.

If I allow myself to think about tomorrow, this is a promise I can make– I will walk again.  And when I do, I will celebrate with all of you.

Thank you for joining me on this journey.

Lots of Love,

Suz

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One response to this post.

  1. Posted by Karen Shmihluk on October 4, 2011 at 1:26 AM

    Suzy,

    My dad had GBS in 1988 at age 68. He spent 5 weeks in the ICU and 5-6 months at Doylestown Hospital in Rehab. I took him to water therapy, which he loved. It was a frightening experience for the whole family, but, like you, he had a good attitude and recovered to completely get rid of his wheelchair and return to dancing at senior centers! He lived a full life and eventually recovered most of what he lost. He had trouble throwing a ball and running but that’s about it. Good luck to you in your recovery! Your writing is terrific–I foresee a book about this in your future.

    Reply

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