I am optimistic. But I also know that, with time, I'm beginning to fight issues of aging as well as long-term paralysis - Christopher Reeve
image by: DiDonato Paralysis Foundation
Just three short years ago I was ignorant to the realities of paralysis. I didn’t know what it meant to have a spinal cord injury or what that world was like.
A world that I never imagined I would be a part of at such a young age. After my story hit the media, people had a lot of inaccurate conclusions about my situation and many of these misconceptions were repeated in the comment section of my news stories.
I’m always a sucker for reading comments because I’m so curious to see what people think. But people seemed to have a lot of misunderstandings. “Isn’t she a paraplegic?” “She can’t have sex or have babies so her husband should leave.” “Her husband will have to do everything for her.” When I read these things I wanted to jump through my computer screen to kindly let people know they had it all wrong.
Unless you yourself are paralyzed or you know someone who is, how could you possibly know everything about our world? So I’m here to set the record straight on some common misconceptions.
1) Can’t have sex.
Let’s go ahead and get this one out of the way. People with paralysis can totally be intimate and yes, we enjoy it as well. I don’t want to get graphic or anything but let’s think about the anatomy of the human body for a second. It’s not like shop closes up down there just because you are paralyzed. Is feeling compromised? Well for some, absolutely. But often times other erogenous zones become even more sensitive in this case. Research has also discovered that there are nerves associated with sexual pleasure that completely bypass the spinal cord.
2) Can’t have a family.
I’m often asked if I’m able to have kids. The answer is yes. Paralysis effects feeling and movement, not the uterus. There are factors that would make it difficult for me such as my low blood pressure and nerve pain. I take medication for both that I’d have to stop which would most likely leave me on bed rest if I were to get pregnant. This is not the norm though. My husband and I want a child more than anything and are hoping to have a surrogate one day. But that is a crazy expensive solution. If not? I’m going to have to suck it up and stay down for nine months. As long as I’m down, the baby will be totally fine. I’ll just be bored out of my mind. I know many moms with paraplegia and quadriplegia who are having and raising children just like anyone else. It just requires some adaptations.
3) Quadriplegics are all paralyzed from the neck down.
This is a huge misconception. A quadriplegic is someone with impairment in all four limbs. For me it is my triceps and dexterity that are affected and so paralysis doesn’t always occur in one straight line across the body. I feel like people often think you are either paralyzed from the waist down or the neck down. But the body is so much more complex than that. So don’t let my intimidating biceps fool you. I’m 100 percent quad.
4) Health insurance covers everything we need.
Insurance companies suck. A few months ago I went to a physical therapist to get evaluated so that I could get a certain piece of equipment. It was a power wheel that goes on the back of your manual chair to help you out. I had to fight for this $8,000 wheel that would give me independence, but I could opt for a $35,000 power wheelchair no questions asked. Makes no sense to me. Many daily items are considered luxury items and are not covered. This includes shower chairs, lightweight wheelchairs and other adapted equipment. And of course insurance doesn’t cover home modifications and adapted vehicles. My driving evaluation was over $1,000 alone. Insurance pretty much covers the bare minimum.
5) We’re frumpy and lazy.
This isn’t the case for the majority. I mean aren’t there frumpy and lazy able-bodied individual, too? Many of us put on presentable attire, get the kids ready, go to work, get the groceries, cook dinner, walk the dog, clean the house and pay the bills. So if you have that image of someone in a wheelchair wearing the same sweatpants for three days in a row watching hours of TV, go ahead and get that image out of your head. It’s a stereotype, not the norm.
6) We aren’t athletic.
Have you ever seen the movie Murderball? If not, I highly recommend it. Many people living with paralysis play adapted sports and it’s not just for a pat on the back. Sure some people play just for fun and exercise but others play to win. I actually play wheelchair rugby and people often ask me, “Are you going to play in the Paralympics?” I wish. The Paralympics aren’t just something you sign up for. People train for years to make it to that level just like any Olympic athlete. It’s really not all that uncommon for someone with a spinal cord injury to workout. In fact it almost seems like the norm from my perspective. Many of us are hyper vigilant about our overall health because, well, we have to be.
7) Our number one wish is to walk.
This is what I assumed would be my biggest struggle the night I was told my paralysis was permanent, but I was very wrong. Personally, I feel like it’d be pretty darn awesome if my fingers would get with the program and start working. People often tell me, “I will pray that you walk again some day!” Well I seriously appreciate the sentiment but let’s work on hand function, triceps, abs, feeling and bladder/bowel function first. Those are the things that keep a quadriplegic dependent. As much as I dislike being in a wheelchair, at least it gives me the gift of mobility. There are so many other issues that have no solution.
8) We all live off of the government and that’s how we like it.
Um no. First of all, many people with disabilities have advanced degrees and respectable jobs. Others want nothing more than to find employment. It’s extremely difficult to find jobs these days but imagine doing your job search with a disability. You’ve got to find a job you are physically able to do and one you are qualified for. Then you have to beat out all of the able-bodied candidates applying for the same position. Other barriers include the fact that benefits essential for survival could be lost. For example. If you require a caregiver, then it might be very difficult to start work and lose Medicaid or Medicare. Regular insurance does not cover caregivers and it could cost upwards of $12,000 out of pocket to pay for one. Imagine having to pay basically a second mortgage just to get out of bed everyday. So please don’t assume that we are all enjoying a free ride.
I am definitely guilty of thinking these myths were reality before I was injured. I had to learn the hard way what was true, but hopefully I cleared some things up about life with paralysis. Some of the items on this list might sound harsh and you couldn’t possibly imagine that someone might have these conclusions, but many do. Paralysis is not fun. I don’t like it and I would appreciate a cure like yesterday. But, the more people that understand our situation, the better our lives can be until then.
Source: Rachelle Friedman, 8 Misconceptions About Life With Paralysis, The Blog, HuffPost, March 24, 2014.