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?

Tuesday, August 21, 2012

Good Advice

Saw this on Facebook and thought it was good advice and something I should keep in mind Thursday. I have a checkup with my neurologist and I'm certain a blood draw is in my near future.

Monday, August 20, 2012

A Most Wonderful Gilenya Anniversary

Today is a very special anniversary... FIVE YEARS ago today I entered the TRANSFORMS clinical trial to compare Fingolimod (Gilenya) to Interferon Beta-1a (Avonex). I vividly remember being terrified of both the  needle (roughly the size of a turkey baster) with which I would have to get personal on a weekly basis and the innocuous little pink pill whose side effects were heretofore unknown to me.

Here is the post that documents the start of my adventure:

Looking back on that day, I will always remember it as one of those life changing, pivotal events. One of those moments that separates the past from the future and leaves in its wake dramatic change. It wasn't long before that day that I had finally started feeling *normal* again after what has since become known as my Last Documented Relapse thus far.

In April of 2007 I had one of my many and frequent (at the time) earth shattering relapses which had left me numb, weak, and suffering uncontrollable panic attacks. The relapse that found me flat on my back in bed one day, staring at the ceiling wondering "if this is all life has in store for me, really then, what is the reason to go on?" The relapse that forced me to face myself and my future and either choose to give up or take charge. It was the relapse that made me choose to enter the clinical trial.

If you were to judge the luck and good fortune I've had in my life by the size of my bank account, it wouldn't be hard to see that my life has been a Series of Unfortunate Events. But having a chronic, incurable, often times devastating disease like MS has taught me that true luck and good fortune cannot be defined by a number prefaced by a dollar sign. Indeed, there could be no amount of money presented to me now for which I would relinquish the past five years of my life and return to that bed, that ceiling, that relapse, that dilemma. What I have been given is worth more than any string of zeros could provide.

Quality of Life. Three simple words that, when strung together in that order, mean more than all the gold on earth.

I know Gilenya has not been the magic bullet for some who have had adverse events or shown no improvement, but for many, including myself, it's been nothing short of a miracle. Everyone's experience is different, of course, and I don't entertain any delusions that I am "cured". I know I will relapse again, eventually. And when I do I will fight my way through it and come out on the other side with my spirit intact -no matter the physical setbacks.

I am just so happy that I made that decision. That for once in my life I decided to be proactive and take charge of the course of my life. Even if it meant thrusting myself squarely into uncharted territory well outside of my comfort zone and serving my very being up to science on a Petri dish.

Over these last five years I have been thanked by many on the other side of the experiments (the pharma reps and doctors alike) for unselfishly agreeing to take part in this historic trial that forever closed the door on "needles only" choices for MS treatment.

I don't think I did anything particularly courageous though. Unless you consider reaching for a life ring and hanging on tight while drowning takes an act of courage.

Rather, I will be forever indebted to Novartis, UF & Shands, all the wonderful doctors and and clinicians who have devoted their resources and (in many instances) their very lives to finding a way to give me back my QoL.

Being relapse free for five years and counting: PRICELESS!