Chronic Illness & Emptiness: A Race With No Finish Line

stopwatch-259303_1280Yesterday was my last day of physical therapy.  I started PT back in April for Myasthenia Gravis (MG).  From the beginning, I was told there were no guarantees and that PT wouldn’t take away my illness but could slow its progression.  Fair enough.  But I was told that I would live life in less pain.  As someone with five illnesses, I have gladly welcomed the gradual improvements in the pain department.  A couple months ago, my therapist, “C,” said that I’ve made so many improvements and that I’m the only patient they have who exercises at home regularly.  With regards to the things I still can’t do, C, told me that I would not be able to do these things tomorrow.  It would take time.  And having her next to me in physical therapy, wouldn’t make these changes happen any faster.  So C reasoned, since I was paying out of pocket, I should continue physical therapy on my own at home.

When The Journey Never Ends

While I’m grateful for the improvements I have made, since yesterday morning, I’ve felt an emptiness that’s hard to put into words.  It’s not like I imagined my last day of therapy would end with all the staff erupting into applause and me going skydiving and mountain climbing.  But maybe I thought I would finally master every Pilates move in my session and then I would go out to the movies and eat ice cream and pizza.  (When I was young, especially in college, going on unplanned trips to the movies was my favorite stress-reliever.)  The thing about chronic illness, visible or invisible, is that there is no end.  It’s like being in a race with no finish line.  The transitions involved–getting a diagnosis, finding a doctor, finding another doctor, finding yet another doctor, experimenting with different treatments, crying in despair, feeling hopeful again, etc–aren’t punctuated with bright markers.  There are no pictures of me in a cap and gown to mark the last day of physical therapy even though fighting MG is harder than any subject I ever took in school.  There are no Hallmark cards to mark this occasion.

After therapy, I thought about inviting someone over to watch TVGN‘s new biography of the New Kids on the Block with me.  But as soon as I got home from therapy, I slept.  And slept.  I woke up just in time for the biography (even my body knows how much I love NKOTB).  I did not have any triumphant moments yesterday.  If there was a victory, it was an underwhelming one.  There were no fist-pumping, “I got this” moments.  In fact, I missed a few Pilates moves that I’ve been able to do half the time, which made me feel for Olympic gymnasts who miss their mark during competition.  After therapy, I did what I always do–I went to the pharmacist.

What Is The Goal Exactly?

I’ve been trying to wrap my head around the emptiness.  Why do I feel this way?  I think it’s because sometimes with illness, the goal is hard to define.  It’s not like finishing a term paper or earning a diploma.  What would I really want with physical therapy?  If I weren’t worried about being “reasonable,” I would like to go back to the life I had before MG where I did the twist in the shower almost every morning, cooked six-course dinners, and had energy for days.  From the onset, the therapists said it was unreasonable to expect me to be my old self again.  On paper, that’s probably true.  (I say “on paper” because only God knows the future.)  So I set my goal to being in less pain and having enough energy to get my life back on track with my goals.  This year, I was able to do cool things I couldn’t do before PT like guest speaking on HuffPost Live and writing my first Huffington Post article.  These tasks require energy.  Sitting up in a chair for forty-five minutes and being a panelist would have been impossible for me one year ago.  I am grateful for the improvements I’ve made but I still live in so much pain between the combination of MG, polycystic ovarian syndrome, psoriasis, asthma, and bipolar disorder.  I want to believe that some day, I won’t be in pain every minute of every day but I don’t know that for sure.

Just Being Here

Last night, I watched the NKOTB biography and ate some gingerbread gelato as a mini-celebration.  I love gingerbread the way most people love chocolate.  If you recall from my previous post on meeting Jordan Knight, I have loved the guys since 1989 and even attended an NKOTB concert hours after surgery in 2008, the year they reunited.  Given my irrational love of the New Kids, you can imagine how their fifteen-year retirement felt like an exile for me (and millions of other fans).  At one point, the interviewer asked Jordan if the New Kids would ever leave again.  I think she was looking for a guarantee, a year, or a specific length of time.  He responded by saying they would keep on performing as long as the fans would keep on coming.  Maybe there are no guarantees when you’re running a race with no finish line but maybe we can celebrate just being.

–Your Stylist, Jessica Gimeno

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JessicaGimeno

Hi, I have five illnesses--bipolar disorder, myasthenia gravis (neuromuscular autoimmune disease), polycystic ovarian syndrome, asthma, and psoriasis. Most of the organs in my body are affected. I'm dedicated to being a stylist for sick women. As someone who has experienced changes in my appearance due to my 12 meds (including Prednisone), I know how hard it can be when your face and body change overnight. (In fact, because of treatment, between 2008 to 2010, I went from a size 0 to a size 10. While I lost the weight, there are permanent changes in my face and body, which I've grown to appreciate.) My blog will also help women deal with other issues like surviving chronic pain and fatigue. Healthy people can also use this blog as a window into what life with illness is like. Let this website be a place where we can draw strength from each other despite our illnesses and find solutions to our everyday challenges!

One thought on “Chronic Illness & Emptiness: A Race With No Finish Line

  • December 23, 2014 at 9:16 pm
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    Very well written, Jessica.

    Where does one draw a line for a reward when it comes to invisible illnesses. A very good question indeed!

    Reply

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