Don’t Give Up. Don’t Ever Give Up.

Original Email Date- September 8, 2011

Everyone, Since I last emailed you, so much has transpired.  It’s been a long, strange trip since I was diagnosed with Guillain Barre.  But, as Jimmy V said in his 1993 Espy Speech— “Don’t Give Up.  Don’t Ever Give Up…”  I’m a Carney, giving up is not in our DNA 🙂

The last time we “spoke”, I was excited from a great therapy session, riding a horse named Libby, and starting to feel my legs again.  I could see the small signs of progress and healing then.  Over the past two weeks, I have seen significant signs that I am closer to getting back on my feet again.

I was able to feel my legs for the first time, and I must say, barefeet on the cold ground was the best sensation I’ve had in ages.  I was able to swing my legs off the side of my bed, unassisted and sit up.  I was able to roll over in bed for the first time, and get into my curled position to get a good night’s sleep.  I was able to ditch the walker, and graduate to Forearm Crutches and walk 200 feet with the assistance of my therapist, for the first time.  I was able to stand, on my own, in the pool last week, for the first time. It was an emotional moment, because I had forgotten what it felt like to be up on my own two feet.  I was back on the horse yesterday, and was able to stand up in the stirrups, while the horse was galloping, for the first time.  Devon Horse Show here I come!  Finally, today, I was able to swim for 4 seconds under water, on my own, for the first time.  My lungs have been impacted by the Guillain Barre, so holding my breath and kicking my legs was a feat!

Each day brings a new emotional dynamic to my life.  GBS, while unplanned and unrelenting, has been a unexpected blessing.  Yes, I’m sick.  Yes, my independence has been taken away.  No, I cannot work.  No, I can’t walk.  However, GBS has forced me to Stop and Look at my life.  It has made me reflect on all that I have, and all that I want.  By having this time to be quiet and introspective, I know that I am meant for big things in my life.  I know that there is much more that I need to do to give back, the way I have been given to.  This has been a life changing experience for me, and has humbled me tremendously.  I will never again take for granted being able to get out of bed, get dressed, and go to work, or see my family or friends.

I look at JP each day with such admiration and more love now truly understanding what a feat it is to learn to walk.  Each day is a gift, and should be treated as such.  I will not sweat the small stuff, and will focus on what really matters-  My health, my family, and my friends, and Bud Light Lime 🙂  I have been given a second chance at a spectacular life, and I’ll be grabbing on with both hands.

The doctors have tentatively scheduled my discharge from Bryn Mawr Rehab for Tuesday, September 13, pending my recovery is where they would like it to be.  While a month here seems like a long time, I’ll still be doing Outpatient therapy for several more weeks, as the recovery does not stop once I leave here.  The entire staff at Bryn Mawr Rehab have been such a blessing to me.  Joe and Aimee, my therapists, have been the best thing that could have happened to me in my GBS journey, besides the amazing neurologist who diagnosed me before GBS ravaged my body. Not only are Joe and Aimee teaching me how to walk again, but they spend time with me every day reminding me that I will get better.  Dr. Kraus, my doctor, has fought to get me the best medical attention, and works with me daily to ensure that I’m back on my feet again.  It’s people like Joe, Aimee and Dr Kraus that are the true miracles in this crisis.

I have so much love in my life that I am continually overwhelmed with emotion.  Beyond the complete dedication from my siblings and parents, the dozens of cards, the letters, the texts, emails and flowers, the ultra soft Phillies Blanket (Thanks Aunt Gail, Uncle AJ, Sammi and Alyse) and yes the chocolate– thank you Bartons and Barb Trotter!), have been such a wonderful gift.  While I can’t respond to all of you, as my energy level is still very low, I read every note, and the sentiments are felt very deeply by me.  So, please keep the thoughts and prayers coming and forward this message on to anyone I may have missed.

I’m truly touched that you have all been on this journey with me, and I’ll continue to keep you posted as I learn to rebuild my body and my life.  I’ve been posting pictures on Facebook so that you can see for yourself my progress and recovery.  From the Bottom of my heart, I thank you.  My recovery is progressing so much better because each of you is cheering me on.

Thank you for joining me on this journey.

Suz

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