Monday, August 27, 2012

It's not the size of your comfort zone that matters; it's what you do with it.

I've been in a reflective mood of late, considering my recent Gilenya Anniversary and all. If I could sum up, in a single thought, what has been the most dramatic change over the course of the last five years since I started this journey, I would be hard pressed to find something that beats the expansion of my Comfort Zone.

I went from not wanting to leave my house and being terrified to drive on a highway to flying all over the country and doing public speaking.Public speaking!! You know, the thing that most often tops Death on the list of responses to the survey on What People Fear Most.

I had an epiphany the other day. It occurred to me that when one has a chronic illness, the size of their comfort zone is directly proportional to their current state of health, with all of the ugly symptoms taken into consideration. The comfort zone grows and shrinks according not only to our mental state but also our physical one.

When I was relapsing and feeling bad, my comfort zone shrunk into such a tight circle, it almost closed up and went "POOF!" My bed was my only safe place that afforded any comfort. Since I was relapsing with such regularity -- every three months with a three month recovery period -- I was thankful that at least my comfort zone was queen size with a pillow top.

After I got into the TRANSFORMS clinical trial for FTY720 (Fingolimod aka Gilenya), things began to change for me. It was so gradual that only looking back over the last five years from my current perspective can I sit here and be astounded by the transformation. (Turns out TRANSFORMS was a good name for the study after all, eh?).

I went from lying on my back in bed, my only comfortable place, wishing I was dead, to being comfortable with the idea of hopping on a plane to go somewhere I've never been to speak to huge groups of people I have never met.

There is no magic involved. There's no snapping one's fingers to make it happen. Turned out it was baby steps. Or just regular steps. The emphasis is on steps. You have to keep moving in order to affect change. Think of your comfort zone as a sort of elastic bubble. If you always stay within it and never test the elasticity, you will never know how far that bubble can stretch. You will always be stuck in your small circle of comfort, never realizing just how resilient your bubble might be.

I began pushing my bubble when I got into the trial. The very act of signing that informed consent paperwork was my very first step. I was determined to make an effort to change the direction of my life. In doing so I was rewarded. First with the self confidence to know I could drive alone, into a big city, and find my way without dying in traffic or getting lost on the wrong side of town. Sounds silly? These were bona fide fears in my mind. Legitimate reasons to never leave my bed.

As the symptoms of my last relapse gradually subsided, I found myself pushing that bubble more and more. Each time finding that it expanded with little resistance, increasing the size of my comfort zone. Although I have not had a relapse since April 2007,  I have had other illnesses such as stomach flu or head colds since then and my comfort zone temporarily shrank, but never back down to the size of just my bed. I knew that it was a temporary setback and as soon as I felt better, my bubble was back to size.

Some people are born risk takers and bubble pushers. I am not. It was something I had to consciously do. When a friend I met through this very blog wrote to tell me she was joining the Gilenya Guide Network and would be traveling  around speaking, she tried to encourage me to join too. I remember thinking about flying (which I had not done in 30 years and certainly not since 9/11) and public speaking (which I had only done on two occasions -- once at city hall defending my application for rezoning, and another time to speak to the school board -- both times ending up with such a bad case of the nerves that my voice croaked and squeaked and I felt like I would throw up all over the podium) and I just laughed at her. But Anne, of Just Call Me Grace wouldn't let up. I owe her a lot.

Because of her getting into my bubble and giving it a good shove, I now can fall asleep during take off of a 747. I can walk up to strangers and confidently strike up a conversation. And I own a pair of Converse Chucks, but that's another story.

Some people have bigger Comfort Zone bubbles. Some have tiny ones. Those who are ill sometimes have none at all. If you see someone struggling with their bubble, step in and help them gently give it a push. You never know what might blossom, and everyone can use a bigger Comfort Zone. When you feel like you know your own space inside and out, and things get a little too comfortable, give it a push. Take a few steps outside and test the waters. Who knows what fear you have today that may be something you look forward to tomorrow?

I have come from lying on that bed fearing tomorrow to looking forward to 3 speaking engagements in the upcoming weeks. Speaking to the entire sales force for Novartis and only days later speaking to  researchers from all the pharmaceutical companies at the Disruptive Innovations to Advance Clinical Trials for Pharma, Biologics and Devices conference in Boston. It seems like a dream, but it was just a matter of putting one foot in front of the other. In doing so, I'm really quite comfortable within my *zone* now.

How big is your bubble?

3 comments:

  1. Wow. This is amazingly inspirational, I am so proud of you, and I very much want to be you when I grow up :-) Pinky swear. You rock, my friend!

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  2. I'm glad you are stepping out. Sounds like this treatment is working for you.
    I'm on Gilenya too. Have you had a problem with your white blood count dropping?

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  3. Thanks, Cynthia! <3

    Hi Nicole - sorry for the late reply. Was cleaning my inbox from a week's worth of emails and see I overlooked this. I have not been told what my white blood count is. Of course, while I was in the trial I wasn't privy to that information. Now that I am out of the trial I have had regular checkups and I think they would let me know if there was an issue. That said, I have been remarkably healthy and not had even a head cold in a very long time. Even tending to sick family members and not catching what they've got.

    Since I'm such a hypochondriac, perhaps it's best if I don't know about my WBC. How is Gilenya treating you?

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