Meet Edie, me+ community member
After a traumatic accident, Edie ended up with seven broken vertebrae in her neck and spine. She also broke 11 of her 12 ribs and was rushed to a hospital where she stayed for 10 days before being transferred to another facility, where they knew nearly nothing about spinal cord injury.
“I must have been there for 6 weeks, and they never even taught me about a bowel program. They told me to sit on the toilet and teach myself how to pee again. They were really trying to be nice – they were just ignorant about spinal cord injury.”
“The hardest part is that you don’t know what you don’t know!”
Edie eventually ended up at a rehab hospital.
“That was a miracle! They let me shower every day instead of every two weeks, to catheterize myself – to be independent. Still, it’s terrible to think of all the people who are still out there helpless, just because nobody insisted that they be taught! The world tells you that once you are broken, you will be dependent for the rest of your life. And since you don’t know what’s happening, you think maybe it really is that bad, that something about you is really wrong.”
“That’s why you need to get yourself hooked up with others asap. You need to find out that no, there are lots of others just like you, that you are actually quite normal.”
Part of Edie’s rehab program consisted of attending a support group run by peers. In the group, Edie saw people who had been living with paralysis for decades, coming to the group to share information with the newbies – some of whom attend the meeting still in their hospital gowns. Edie, with her background in education and team sports, joined as peer-counseling ambassador.
“I was lucky. I knew right away that I wanted to compete, and I knew there was a way to do that. There were always disabled athletes in the marathons I had run, so I knew there was a place for me. I wanted to share that with others.”
After being discharged, Edie explains that she had a friend come live with her for a while. “After rehab I went home and had a friend stay with me for the first two weeks. Of course, she went to work, so during the day I was alone.” “I had to set aside my ego and actually ask for help. That was a big lesson.”
Edie reflects on the saying some veterans of spinal cord injury taught her ‘when you go home, that’s when your rehab really begins’.
“The first week home I had regular melt downs every couple of hours, but after the first week it was better. I was so proud when I’d accomplish something new. The first time I rolled down to Traders Joe’s by myself, I felt like I’d completed a marathon!” One of the hardest parts of being home, as Edie experienced it, was the need for new routines. “When I got home from the hospitals I was really confused about catheterizing. At first, I would set an alarm every morning at 2am to catheterize myself. It’s a good thing I was sleeping alone – I’d be up in the middle of the night yelling, “Argh, I can’t find the hole!”
Eventually Edie was able to relax the rigid scheduling and sleep through the night. From her current perspective looking back she says, “Now that I have had a few years to get used to this, I think the most important part of the journey is to find peers who are going through the same thing."
“You’ve got to celebrate - Every. Little. Thing.”
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Adjusting to cathing can be tough, with a range of practical, physical and emotional challenges. You don’t have to figure it out alone.
