Gloria Stokely
“Life is only limited by the limits you put on it. Go forth and live your life to the fullest focus on the positive and enjoy.”
My life changed in the summer of 2004. The neurosurgeon who did my surgery sent me home the day after surgery with absolutely nothing—no help for bladder or bowels or even equipment. I was left to figure things out on my own and fight for what I needed.
What was key in getting to where I am today?
1. Online private support group where people who understood the challenges I faced and could openly discuss issues without fear. These groups included people from around the world; it didn’t matter what time it was, I usually had someone respond. Attending a live support group was important too. The friendship and support from these groups can brighten someone’s day or life.
2. The opportunity to try a custom wheelchair let me know I could wheel a manual chair without a fibromyalgia flare-up. I love my custom manual wheelchair and the exercise I get.
3. Doing research, educating myself and others, and attending disability expos to see what is out there.
4. Trying new things (ex. waterskiing, handcycling, jet skiing) and doing old things in a new way (ex. driving with hand controls).
5. Traveling domestically and internationally and knowing what resources are available to improve life.
6. Networking and advocating for Myself. The results of doing so for me were SureGrip hand controls, an accessible van, a custom wheelchair, SmartDrive, bladder & bowel management, platform lifts, an adjustable bed, Social Security Disability, Medicare & Medicaid, HASCI, Homestead Exemption, service dog and a team of doctors who manage my care. This is some but not all of what I have achieved to enhance my life.
You must educate yourself to better advocate for yourself or have someone who does. There are resources out there, and knowing how to access them is key to improving your life. It could be as simple as knowing that there are a variety of catheters, knowing that you can get in free at the movie theater, or that a beach has a free scooter to use so you can easily access the beach.
Life is only limited by the limits you put on it. Go forth and live your life to the fullest. Focus on the positive and enjoy.