Wednesday, February 18, 2009

The Pitfalls of "Playing it Safe"

A Guest Blog

- by the Juggling Librarian...

The past past few years have been a roller-coaster ride for me. I was a normal, healthy, active student at university, studying fine arts and just discovering my strengths and femininity when a mysterious spinal cord infection hit. Suddenly I was plunged into a world of hospitals, wheelchairs, physiotherapists and neurologists.

I have a neuromuscular condition that causes severe weakness in my arms and legs. Since 2003, my limbs have become progressively weaker - to the point of near paralysis. After several rounds of intensive spinal cord rehabilitation, I learned how to walk again, despite a prognosis of never being able to do so. I continue to have ups and downs - periods where I cannot balance my weight and sometimes fall. These relapses often occur when I overextend myself - when I push myself too hard through work and exercise - or when my immune system is weakened with a virus or infection.

It is frightening not knowing when my legs will fail me. It seems reasonable to play it safe, and avoid situations that pose a risk to my health. Doctors and other health care professionals have encouraged me to stay at home and apply for disability benefits. It is tempting to heed this advice and avoid work and other activities that may compromise my physical health.

But that's not who I am. I am a risk-taker and constantly resist definitions of myself as a disabled individual. I am also stubbornly independent and strive to live a full and productive life despite my limitations. After losing the ability to walk, I went back to school and obtained a Masters degree. While undergoing rehabilitation for my legs, I continued to take graduate courses in library science - still allowing me to use my artistic abilities but a great and very sensible choice for a disability such as my own. After graduation, I moved to a new city and started working full-time in a job that I love. In my spare time, I attend ball and pilates classes - and help with ReBuildingYou. I am accomplished in my professional and personal life because I push myself.

After living with a neurological disorder for six years, I still haven't found the balance between playing it safe and engaging in the activities that I love. Sometimes it's a struggle making it to work, and walking through the building to my office. At the end of the day, I'm usually at the point of collapse - my legs stop working, and I require assistance with the simplest of tasks. Fortunately my reserve of energy is replenished after a good night's sleep!

Sometimes I wonder if overextending myself is self-destructive. Why do I feel compelled to to this? I constantly test the limits of my abilities by pushing myself to do more and more. I learned this strategy in spinal cord rehab (aka bootcamp), where the physiotherapists and occupational therapists worked my muscles to the point of exhaustion. I learned that a small degree of discomfort and pain is sometimes necessary to improve muscle strength and endurance.

At the same time, I understand the importance of nurturing myself. Hot baths, heating pads, and plenty of rest help to replenish my energy reserves. Every morning, afternoon, and evening, I close my eyes and consciously "check-in" with my body. If I push myself too much, my body will give me not-so-subtle cues to let me know that I have reached my limit. My legs become flaccid - like noodles - and the wall becomes my best friend.

As a person with a disability, I have discovered that the key to living a full and productive life is to frequently test my boundaries. I haven't yet learned how to strike a balance between maintaining physical health and engaging in work and play. My condition fluctuates over time, making it difficult to predict how my body will respond to different activities.

Testing my boundaries and not 'playing it safe' actually helps me and is an integral part of my rehabilitation because if I didn't do that, my limits - the imaginary safe-zone bubble that we all have around us - would continually shrink, day by day. I would achieve less and less and that would be contrary to living as full and productive life as possible... Which is something that everybody of every age deserves to try, regardless of ability.


6 comments:

  1. What a fantastic article and attitude. Quality of life is so important - and especially if you're disabled you find that by pushing the envelope a bit.

    Yay! Thank you for sharing - who else out there has an amazing story to share?

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  2. Wow, thanks for speaking to this. I've been injured in three car accidents and also have an invisible chronic illness, endometriosis. Since having to leave my job four years ago because of dizziness and fatigue related to brain injury, I've been pushing myself to get back on the horse. I was in another accident as well and it's been hard, but I went back to school and have nearly finished my Master's degree in Counselling Psychology. I've been pushing, hard, for nearly three years and at this end, am living far too close to "the wall" (the one that knocks me on my ass after blindly pushing too hard-- the difference between hard enough and too hard is not always clear to me). This now has me spending far too much time on my ass, quite incapacitated by fatigue, pain and symptoms as well as pissed off about it. This also affects my quality of life, so I'm still trying to find that place of healthy tension between rest and reach, and this is elusive. I want to make the point that I think we need to be careful of work ethics such as "I'm gonna do this even if it kills me." That's not much quality of life either.. You're right, it takes a lot of strength and determination but for myself, I've made the mistake of overextending myself and not resting enough. On one level, refusing to take it easy has allowed me to get this far and I probably wouldn't do it any other way but there's been a piece of it that's been like shooting myself in the foot. So now it feels like I'm limping to the finish line.. but hell, I've almost made it. Here's hoping I don't fall flat on my face ten feet away. Now what's getting me through is fantasizing about being a lady of leisure for a little while, at least. And yes, my trusty steed: my "drive" and that keen interest in working with people is very much there.. it's just tired. Perhaps, after a good long nap, we'll ride again.

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  3. ... one day at a time seems to be the way to go in this stressful world - enjoy the small pleasures in life, like the coming of Spring with the trees in bud and the bulbs struggling through the hard winter surface ... Thanks for this.

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  4. Thank you for your comments, Julie, Giselle and anonymous. It is challenging trying to figure out when to stop pushing myself. Sometimes I do too much and suffer the consequences. And when I sit on my butt and try to relax, I feel guilty. It's a lose-lose situation -- or a win-win situation? Because pushing it has helped me achieve my goals. And resting also heals my body and spirit. It depends on perspective.

    I've been limping to the finish line for years. And I discovered that there is no finish line - life just keeps going.

    One day at a time.

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  5. The latest word...

    Congratulations Marilyn! On getting your new job. Getting out of hospital a day early especially so that you could apply... Working so hard to prove to everyone that you could do it, disability or no - excel at it in fact... Fabulous!

    Perhaps life is more like a stage race? And you won this stage hands down.

    xx

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  6. Congratulations Marilyn! Very good news indeed. Hope to meet you and Julie sometime for tea once my final bits of work are in, which should be done by mid month (fingers crossed). And yes Anonymous it's wonderful to see the new spring life beginning again. These are good reminders of the inevitable cycles that life, and that living well and fully with disabilities, entails.

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