In all of the years that I have been involved in public speaking, I have always stressed to audiences that the #1 rule when interacting with people with disabilities is to be open and honest with your questions. Personally, I would much rather people ask me a question than stare and wonder.
That being said, some questions that people have are of a more sensitive nature, and so I understand why they may avoid asking the tough stuff out of fear or embarrassment. Fortunately for all of my readers, I have been asked just about every question in the book, and I don't embarrass easily. And so this blog post is going to be about those awkward questions and their answers.
Obviously, some of these questions will have different answers, depending on the person responding and their individual disability. I will be writing from my own personal experiences with a T-12 spinal cord injury, with some information thrown in from input from my friends with similar SCIs. I am in no way going to claim/attempt to cover every correct answer for these questions. I will try to keep this post as PG as possible and stick to medical terms whenever I can. Let's do this thing!
Bowel & Bladder:
I thought I would jump right in to the most frequently asked question I receive. "How do you go to the bathroom?" I was actually just asked this question by a curious, adorable fourth-grade boy on my recent trip to Ohio. Have I mentioned how much I love the honesty of children? Depending on a person's level of injury, control of the bowel and bladder are usually affected in some way. Some people can tell if their bladder is full, but are unable to empty it on their own. Others have no feeling or control at all.
When dealing with the bladder, a catheter is often used to empty the urine. A catheter is a straw-like tube made from plastic or rubber with openings on each end that is inserted into the bladder via the urethra. Catheters come in all different lengths, some have different tips, etc. (We often refer to them as "pee-tubes"). Some catheters are indwelling, which means they are retained long-term and usually drain into a bag attached to a person's bed, wheelchair, or thigh/leg. Other catheters are intermittent, or used for a short time and removed once the bladder is emptied.
If the person is unable to self-cath intermittently, the indwelling catheter may be used, or a caregiver may catheterize the person using an intermittent catheter. For someone with a lower-level injury, who is able to use their upper body and transfer on to a toilet, self-cathing is a great option, as long as you can find an accessible restroom. If not, as long as your catheter is long enough, you can empty your bladder in to a portable urinal, pop can, water bottle, blank canvas of fresh snow, etc. One of the perks of paralysis- girls can now write their names in the snow just like the boys!
If a person is not able to transfer easily to a toilet, a leg-bag can be handy, so that you don't have to find a flat surface to lay down on to assist the caregiver with catheterization. But that can be a hassle as well, not to mention time-consuming. Another option for folks who need total assistance to cath is a surgical procedure known as urinary diversion. Surgeons reroute the flow of urine so that it can be emptied through a tube in the abdomen into a bag, into an internal reservoir, or directly from the tubing into an external receptacle for disposal. Which means that I have some friends that can pee out of their belly buttons. How cool is that?
Paralysis not only affects the bladder, but the bowel as well. While most people cath every 4-6 hours (depending on how much you drink), bowel programs are very individualized. The bowel can actually be "retrained" after a SCI to work on a schedule. Most therapists are satisfied with the person evacuating their bowel every other day, while some prefer a daily regimen. Some schedules are very structured, while some are more relaxed. Without getting in to too much poo detail, you can visit this
link to learn more about bowel management for people with SCIs. If you want to know more about how people poop, have a baby. You will learn more than you ever wanted to know about poop.
Sex/Reproduction:
Another big question that people ask is about sex and having babies. Yes, people with spinal cord injuries can have sex and have children. And we are allowed to do so here on Earth with all of the able-bodied people. They don't send us to a laboratory on Mars. Shocking, I know. Let's start with sex. I'll try to be straightforward without being indelicate. But if you are a young person, this would be the time to exit the blog and go back to stalking your friends on Facebook.
I'll insert my little disclaimer here that I am a firm believer on a few items:
- Sex is a beautiful act created by God and meant to be experienced between a husband and wife.
- While sex isn't the most important aspect of a marriage, it is certainly a vital one in a healthy and happy relationship.
- A great sex life requires several things, one of the most important being great communication. This is crucial for any couple, disability or not.
Again, sex is something that affects people differently depending on their injury and gender. For men, their injury may affect their ability to have an erection and/or ejaculate, as well as a loss of feeling. Men can often be aided by medication and/or surgery in order to fully participate in sexual intercourse. For women, SCI can prevent the ability to have an orgasm, and again, overall feeling.
As mentioned above, communication is always important, but maybe even more so for a couple dealing with a disability. There is not a "rule book" for right or wrong; each couple gets to make up their own set of rules. It's usually trial and error at first, which means that lots of practice is needed! :) My advice for a married couple experiencing sex after a recent SCI would be to communicate like your life depends on it- and your sex life does! Don't be afraid to be vocal- your spouse is probably just as nervous as you are and is looking for direction. Be prepared for things to be different, but that's okay. Find what works for you and don't be afraid to be adventurous.
And then comes kids! Most men with SCIs can father children, although fertility procedures may be necessary. Women with SCIs are usually able to conceive without problems, but the pregnancy itself will probably be treated as a high-risk one. For a more in-depth story of how this worked for me, you can read
this blog post and the following entries.
ADLs:
Activities of Daily Living are another part of SCI that will vary from person to person. This topic covers transferring, bathing, getting ready, eating, driving, etc. Some people perform these tasks independently, while others require some assistance or full assistance from another person. There are also adaptive tools that enable people to gain more independence with their ADLs.
For instance, while I am considered to be fully independent with my ADLs, there are days when I am either too tired or in a rush, and Russ will help me pull up my jeans. If you ever want to experience a disability for a few seconds, try to put on a pair of jeans without using your legs. It's quite the adventure. And don't even get me started on pantyhose or tights. They are the devil. The easiest way to find an answer for ADL questions is to just ask the individual person. Here is a
link to some pretty cool adaptive equipment if you are interested in learning more.
Complications:
The above mentioned topics are what I am asked about the most, but there is a lot more to the story. While most people think that a spinal cord injury simply equals the inability to walk, there are many other complications that must be dealt with on a daily basis in order to remain as active and healthy as possible.
Paralysis mean that there are parts of your body that you can't fully feel. While that seems like something that might be a positive thing (no pain right?), it's actually quite dangerous. One of the reasons God created us with nerve endings is so that our bodies react properly to stimuli, whether it be heat, cold, irritation, pressure, or pain. When this brain connection is interrupted by a spinal cord injury, you must be vigilant about taking care of your skin. This is something that therapists will BEAT into your brain during rehab. If you don't take care of your skin, it will kill you.
You have to train yourself to become a protector of the places that can no longer protect themselves. This is something that takes time and discipline. After my accident, I set alarms on my watch to remind me to shift in my wheelchair so as not to put pressure on one area of my backside for too long. I wore thick socks or shoes at all times to protect my toes from injury and cold. I started sleeping with a body pillow between my knees and ankles to prevent pressure sores as I no longer move around throughout the night.
After fourteen years, I still have to remain vigilant about my skin. A single scratch can take months to heal properly. I am currently nursing a toenail that became ingrown before I even realized it had happened. Pressure sores, burns, and cuts can be grounds for hospitalization or surgery. I've heard horror stories of people that neglected their skin to the point where hip bones were protruding and amputations were necessary. On the flip side, you can be so careful and still fall prey to skin problems. Christopher Reeves was the face of SCIs and employed a team of top-notch caregivers and medical personnel. His cause of death? Complications stemming from a pressure sore. It's a very real, daily battle.
As mentioned above, catheters play a large part in the life of most folks dealing with a SCI. Unfortunately, anytime you introduce a foreign object in to your body, you run the risk of bringing germs with it. Urinary tract infections are common and can make you feel as if you have been run over by a semi truck. Not fun, but it seems to come with the territory.
The final unrecognized complication I will touch on is autonomic dysreflexia. Very simply, this conditions occurs when your body is experiencing pain that you are not aware of due to your paralysis. Your bladder could be extremely full, you could have a bad infection, a possible reaction to medication, an injury, etc. Bottom line, it can cause increased blood pressure, headaches, sweating, anxiety, decreased heart rate, stroke, and if not treated or relieved, autonomic dysreflexia can be fatal.
My worst episode of AD happened when I was pregnant with Addison. I was in my office at work when suddenly I felt light-headed, extreme pressure in my face, pounding in my head, and an overall sense that something was very wrong. Thankfully, I worked in a care center and my nursing friends took my blood pressure, which was extremely high. Down to the ER I went, where I was hooked up to monitors and my feet were elevated. Just like that, my vitals returned to normal and I felt fine. My OB-GYN concluded that Addison had shifted in the womb and was applying painful pressure to a part of my abdomen that I couldn't feel because of my paralysis. Once I changed positions and she moved, the pain was gone and my body stopped reacting to it.
I wanted this post to accomplish two things. First, I hope that I have answered a question that you have had but have never felt comfortable asking. Second, I wanted to show you the more intimate, personal side of spinal cord injuries and disabilities in general. You never know what a person is dealing with on a daily basis, even when they show a positive, happy exterior.
You might have noticed an underlying theme throughout this post, and that is that disabilities affect people in very individualized ways. With that in mind, I will be opening my blog for the next several weeks to guest bloggers. I have sent out a list of questions to lots of my friends who are wheelchair users. Guys and girls with varying disabilities will be sharing their stories with you, as well as providing insight into their worlds and how their disability affects their lives in a personal way. Stay tuned!
As always, if you have additional questions, or if I wasn't clear on something, please feel free to email me at ashlee.lundvall@gmail.com, or private message me on Facebook. I look forward to hearing from you!
