Stand.

I got up this morning, and looked around my room wondering what I could do to be productive.  I did a full body check before I moved.  Arms moving?  Check.  Are my toes wiggling?  Check.  Could I sit up unassisted?  Check.  Bed Head?  Check.  Time to plan my day.  I have to do that now.  I have an “energy bank” and there is no overdraft protection, so I need to only do what is absolutely necessary each day.

As I pondered my first move, I sat up, put my glasses on, and started to stretch.  My eyes came into focus on something sitting next to my bed.  My Cowboy Hat.  It’s a hat that I’ve had for a few years now.  Reminded me of a birthday party a few years back where I had a Cowboy theme- people drank out of Mason Jars, guests came in Western attire, and the bartenders named a drink after me- Suzy’s Gunslinger (Jack, Tuaca, Frangelica and sprite- YUM).  I have fond memories in that hat.  This hat has come on vacation with me.  It has been on the beach with me.  It’s been on the dock at Heart Lake with me.  I’m a hat person.  Hats are stylish.  Big fan of Hats.

I put the cowboy hat on (remembering the Bed Head situation), and walked into my “under construction” bathroom to brush my teeth.  I know what you’re thinking.  Why was I wearing a cowboy hat to brush my teeth, you ask?  Because I was thinking back to a time when I was surrounded by friends and family, laughing and dancing all night long.  It was a good night, and I wanted to feel like I was back there, just for a little while.  I played some music as I was getting dressed, and wanted to see if I could dance (doesn’t everyone dance in their room when no one is watching?).  Well, that didn’t go so well.  Note to self-  add that to the list of things to work on in therapy– learn to get my groove back.

I’ve been a country music fan for 15 years.  It started with Garth Brooks, then on to Shania Twain and some Faith Hill.  Then of course, Tim McGraw followed shortly after.  Who doesn’t love a guy in a cowboy hat and boots?  One of my favorite bands quickly became the Rascal Flatts.  They have this unique sound, and the lead singer has a very quirky voice.  They sing about finally Finding the One (“Bless the Broken Road”), in ESPN’s Sportcenter special in conjunction with the Make a Wish Foundation (“My Wish”) and about giving someone unconditional love and support (“I Won’t Let Go”).

As I was coming home last night from my favorite bar, Baggataways in West Conshy, my first night out since my diagnosis, my good friend Kerry and I were tring to find some music on the radio to listen to.  First it was LMFAO (really, guys- are you like NKOTB?), then some Pitbull club music.  Since I’ve already admitted that my rhythm is pretty off these days, I couldn’t really get a beat listening to the bom-bom-bom.. pish-bom bom bom…. So she changed the channel and landed on the country music station.  As we were turning down the long “country” road to my house (how poetic), a classic Rascal Flatts song, “Stand” came on.

“Cause when push comes to shove, You taste what you’re made of, You might bend, till you break, Cause its all you can take.  On your knees you look up, Decide you’ve had enough, You get mad you get strong, Wipe your hands shake it off-  Then you Stand.”  I looked at Kerry, she looked back at me, gave me a High Five, and we started singing at the top our lungs.  You look for inspiration every day, to help you get through. I found mine sitting in a little yellow Volkswagen bug, crutches in hand, with an amazing friend driving me home after a fun night out.  Inspired I was.

Yesterday ended much better than it started.  I was at BMR, working hard with my therapy team, when during a set of exercises, I noticed something alarming.  I couldn’t feel my calves.  We were doing an intense lunge stretch, and I couldn’t feel a thing.  Nothing.  I intensified the lunge, and still nothing.  What was going on?  During hour two of therapy, I told my PT about my lack of sensation, so we did some tests.  Yes, I could feel my legs to touch them, but I have no feeling when my muscles were working.  Unless my hand is physically on top of the muscle, I would never know that the muscle was contracted.  He asked me to do a plank exercise, because we continue to work on my core strength.  OMG.  No feeling there either.  What was going on?  Was I having a relapse already?

I rolled over on to my back, defeated.  I bit my lip to fight back the tears. covered my face, and just focused on taking a deep breath.  In through the nose, out through the mouth.  Am I ever going to get better, I kept thinking to myself?  It’s been 8 weeks since I got sick– seems like an eternity.  I know I’m not done healing, but I thought I was further along than this?!?!  I wonder how much more damage was done that I don’t know about.  The thought overwhelmed me.  I sat and talked to my PT, and he reminded me that GBS attacks in ascending order (feet first), and heals in descending order (head first).  So, my legs will heal slower, and will take longer to fully recover.  And since my core was impacted severely from the GBS, that too, will take time.

I tried to rationalize this, again, in my head, but when it’s your body and it’s not working, you just want to throw in the towel.  In through the nose, our through the mouth.  Repeat.

“Take what you’re given before its gone.  Everytime you get up and get back in the race, One more small piece of you starts to fall into place”.  Every day a small piece of me comes back, and I find another piece that’s still missing.   I will be whole again one day.  It’s just going to take longer than I thought.  I’m so grateful to have the Bryn Mawr team by my side to remind me how far I’ve come, but also encourage me when I’m frustrated because of how far I have to go.  It could always be worse.

I could be just coming off a ventilator.

I could be still in a wheelchair.

I could be a University of Scranton grad.

I could be a Mets Fan.

So, today, I’ll wear my cowboy hat all day, and remember that birthday night.

When all seemed right.

When I was surrounded by unconditional love and support.

When I had my groove.

As always, thank you for joining me on this journey.

Lots of Love,
Suz

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