Right Now!

Original Email Date- September 29, 2011

I find music inspirational.  Music can calm you after a long day. It can pump you up when you’ve got the perfect “arrival” song to a destination.  It can get you excited when you’re getting ready to go out with friends.  It can remind you of a loved one lost, or a new love gained.  Music has the power to change how you feel in any particular moment.  I love music. I love singing in my car, harmonizing with Tim McGraw, and bopping my head back and forth.  Love the new artists, the alternative bands, the country singer, a random British Band, or the folk singer with an acoustic album out.

However, every once in a while an oldie gets on my iPod rotation that makes me tap my foot, play drums on the table in front of me, and sing out loud.  On one of my many afternoons on the hospital patio, a song came through my earphones, and immediately put a smile on my face.

The song starts with a long, lyric-less intro with the piano for over a minute, the drums come in, and you hear Sammy Hagar, Van Halen, starting to screech- “Don’t wanna wait ’til tomorrow,  Why put it off another day?  One by one, little problems, Build up, and stand in our way. Oh, One step ahead, one step behind it, Now ya gotta run to get even, Make future plans I’ll dream about yesterday, hey! Come on turn, turn this thing around…Right Now!  Hey, It’s your tomorrow. Right Now- Hey.  It’s Everything….”  Who’s playing drums with me on their laptop now?? 🙂

When I was admitted into Abington on August 11 with the tentative diagnosis of Guillain Barre Syndrome, I was still convinced they had the wrong patient.  Yes, I was a little weak, and Yes, I was losing feeling in my arms, but I just figured it was the after-effects of enjoying Vegas too much at my age.  You never really rally like you used to, do you?  Missing the days at King’s in Margarita when a stairwell wasn’t exactly what it sounds like.  (Stairwell could mean steps getting to the 6 apartments, or it could mean that each of those 6 apartments was having a party.  You had to work your way up the stairwell after each keg kicked.  And each time, the owners of the apartment had the right to not let you in.  And going to “late night” was the ultimate invite.  Ah, the rules of King’s College.  But, I digress.

Once I accepted the diagnosis, getting used to GBS has been, and continues to be a daily battle for me.  I stay positive, but every day, I hit a small wall- a reminder of what I used to be able to do, and how far I still have to go.  So, I’ve had some time to adjust to the “new normal” of my life.  That includes getting back to activities like running errands, going out to eat, and seeing friends.  I moved home to North Wales temporarily, and got the hang of being out of the hospital. However, maneuvering around a big house took a toll on me physically.  I got the courage to venture out for the first time to Target with Mom and JP that Saturday.  What a humbling experience that was. I ambled in the store slowly, and immediately looked for a wheelchair.  Only two wheelchairs available for a store of Target’s size?  Wow.  So I got in the wheelchair, and was on my way- list in hand, and tons of energy.  JP and I went one way to shop, Mom the other way.  If you can picture JP helping me shop- it was quite a sight.

I felt very uncomfortable being so small, in a wheelchair, in the store.  I was the only immobile person in the store full of walking people; whereas being at Bryn Mawr, being in a wheelchair wasn’t an oddity, it was the norm.  So that was my first hurdle.  The second was how was I going to reach the top of the shelf with JP and I shopping together?  I felt like everyone was looking at me, with these sympathetic eyes as I wheeled around with JP in tow.  I was feeling insecure, but what happened next changed my changed my outlook.  I couldn’t find a DVD set of an NCIS season.  I sat there, frustrated.  A very nice man complimented my Phillies shirt, and found the season I needed.  I needed a box of thank you notes, and a woman reached up to get it for me, without my asking.  I needed a small book light for when I read, and a kid got the size and color that I wanted, when he saw me struggle to stand from my chair.

This is what I have always thought to be true, and now I have confirmation-  People are inherently kind and good.  There are many more good people in this world than there are negative.  It takes much more energy to be spiteful and mean, than it does to perform a kind act or be a nice person.  Being in a wheelchair, and seeing things “literally” from a new perspective, I was touched by the goodness of the human spirit and reminded how kind people really are.

A few days after my Target outing, I moved home to Blue Bell.  How much I had missed my house. I missed my bed.  I missed the corner of the couch in the basement that I always sit in.  I missed my Brita (because water really does taste better in a Brita).  I missed my DVR with back episodes of General Hospital (but let’s be honest, does anything really change in 6 weeks in a soap opera?)  Most of all, I missed my life in my house.  Getting up to go to Lithe and work out in the morning, getting my Dunkin Donuts on the way to the office, and going to Whole Foods for a deliciously overpriced salad.  Lots of things to miss.

When I finally arrived at my front door that Friday afternoon, after a great day of exercise and catching up with my old therapy team at BMR, I literally held my breath when I walked over the threshold of 2 Bromley.  While I was excited and energized, the anxiety of this new reality set in.   What if I fell out of that bed that I loved so much?  What if I didn’t have the energy to get down to that favorite spot on my couch in the basement?  What if I couldn’t carry the Brita from the sink to the fridge after I filled it up?  What if my DVR didn’t tape General Hospital while I was in my own hospital 🙂  It’s amazing the things that rush through your mind at any moment when you have this “new normal” that I keep thinking about.

Alone, I looked around the house and held my breath not knowing what to do first.  I didn’t have much energy so I needed to reserve it.  What to do?  I decided to walk upstairs into my bedroom that I hadn’t seen in 6 weeks (except for an eventful home evaluation with my therapists a few weeks back).  Now, anyone who knows me, knows the first thing that I did when I got to my bedroom.  I opened my closet to look at my shoes.  Yes, I know– seems shallow.  Seems senseless.  Seems silly.  However, if you know me well enough you know that my shoes are a part of who I am, professionally and personally.  I stood there, looking at the shelves of shoes, and smiled.  Hello Shoes. Good to see you my old friends 🙂  Took out my favorite pair of Enzo Wedges and put them on.  Looked great, felt great, but couldn’t walk an inch in them.  Darn.  I’ll have to remember to tell my therapists that I need to add “walking in heels” to my list of goals along with balance and muscle toning.

I was satisfied with my decision to come upstairs to my room.  I slid the closet doors shut and looked to my bed.  Neatly made, pillows fluffed, and clothes laying at the foot of my bed.  I started to sift through them… lots of clothes I sent home from Bryn Mawr, some books that I didn’t get to read yet, and then the pile that made me catch my breath.  At the bottom of the bed was a bathing suit, and several sundresses that I had worn on my vacation to Vegas. This had the opposite effect on me. Instead of smiling, as I did looking at my shoes, I got emotional. I shed a few tears as I realized that these clothes were meant to be put back in their drawers, and the sundresses were on their way to the dry cleaner. But, they never made it.

The reality of how much time I have lost getting sick set in.  Life moved on, and my room stayed the way it was when I left for work on August 11.  What else have I missed?  I gave myself a “moment” to be sad, because if you don’t feel it now, you’ll never get through it.  So, after a short pity party I thought not about how much time I’ve lost, but how much perspective I’ve gained.  “Life is not a Dress Rehearsal” a good friend reminded me this weekend.  This is the only shot you’ve got.  So buck up, and push through it.  “Right now!  Hey, it’s your tomorrow.  Right now! Come on, it’s everything.  Right now! catch that magic moment.  Do it right here and now, It means everything”.

I moved past the newness of my home, and refocused back on my recovery.  Exercises in my houses, doing the stairs without my crutches, and doing my weights like they taught me.  Back to therapy at Bryn Mawr Rehab-  full days of intense therapy, three times a week. While Malvern is not around the corner, I’m confident in the treatment I am receiving.  I know I’m in good hands at BMR, as they were the ones who gave me the confidence to get out of my wheelchair, and they will be the ones who will have me walking, unassisted, in the coming weeks.

When I was admitted to BMR, I was marked a “Fall Risk” with a bright yellow bracelet because of my lack of strength and balance.  I could not do anything without supervision or help for there was a high risk that I could fall and hurt myself.  (To be fair, I’ve been a Fall Risk most of my life, haven’t I?).  After being discharged, I decided to keep that bracelet on as a symbol, with a much deeper meaning to me than just not being able to walk.  I think there is a dual, more figurative meaning to Fall Risk, similar to the multi meaning of Margarita’s “Stairwell”.  The Risk of Falling into old, unproductive patterns.  With all that I have learned about who I am, and the good people I surround myself with, I have the strength not to “Fall” back into these old habits.  I’m keeping this reminder on until I can walk, unsupervised and unassisted.

It’ll be a good day when I get the scissors out and snip off the bracelet.  Until then, the bright yellow bracelet remains on my wrist.

I will walk again, and I can’t wait to celebrate that achievement with each of you.  New pictures were just posted 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.

As always, thank you for being on this journey with me.  You give me the strength each day to move forward.  So next time you’re feeling down, download some Van Halen to your iPhone, start tapping on whatever is closest to you, and grab a beat.

As Sammy says, “What are ya waitin’ for?”

Thank you for joining me on this journey.

Lots of Love,

One response to this post.

  1. Posted by Christine O'Day on October 19, 2011 at 4:17 PM

    Suzy, you just warmed my heart. What an honor to call you friend! You’ll be walling in no time! Be well!


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