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.