As I was lying in bed last night the metaphorical wheels were turning in my head with respect to the next move I am planning on making towards my advocacy mission with getting durable medical equipment and services paid for by Goliath health insurance companies. My mind unexpectedly wandered off into the most unlikely of places. I needed to wind down my brain to try and overcome my insomnia when I started giggling out loud.
Somehow I started reflecting on some of the most embarrassing moments I’ve endured over the last 10 years living this life in a wheelchair. When living with a spinal cord injury there are a 1,001 things that can go wrong in your life on a daily basis, most of which are frustrating, dangerous, embarrassing, and suck the life out of you, but I find there can be humor in most situations.
Whenever I read other people’s blogs, websites, stories, etc. I find the ones most interesting who share their personal experiences in a raw form because so many of us can relate to those moments. If you do not have a disability, I’m sure what I’m about to share with you will hopefully make you laugh, perhaps shy away from reading a certain sentence or paragraph, but at the very least will make you appreciate some of what many of us with varying disabilities deal with on a daily basis. If you do have a disability I’m sure you can relate to at least one of my stories!
Without further ado, I’ve invited myself to a “Roasting” as they say in the celebrity business.
- SHIT HAPPENS
Yes, the topic of this story is pretty much in the title. If you suffer from a spinal cord injury you lose control of your bowel and bladder functions. It’s hard to imagine if you are not disabled what this possibly could feel like other than perhaps relating it to having a terrible stomach virus, and just not being able to make it to the bathroom in time.
There are certain topics people just don’t talk about publicly such as sex, money, and poop! Not me — even if it looks like I have my life together, in the privacy of my own home my body has a mind of its own at times; particularly in the early days of my spinal cord injury where I had zero control over my bladder and bowel functions.
When I was lying in my ICU bed I have a firm recollection of wondering several days into my injury why I had not pooped. I asked the nurse and she said: “Oh sweetheart, you are, you just can’t feel it because you’re pooping on an under pad in bed. We just clean you up when you’re done and eventually you will create a bowel program to poop on your own.”
I thought to myself – “Oh Hell No!” I was 27, had been an incredible shape, loved to rock it out in a bathing suit on the beach, worked hard, played hard, and I just couldn’t imagine what was in front of me. Was I really going to have someone have to help me pooped the rest of my life? In short, yes, but at the time I could not reconcile that someone was going to have to put their fingers up my bum to help me go to the bathroom each morning.
In short, when you are paralyzed you do create a regimented bowel program where you can use different types of medicines or suppositories to help you go to the bathroom at a certain time each day, but in the beginning it’s as if you are going through a bad breakup with your body, and the two of you are fighting all the time.
For the first several years of my injury I had to actually wear depends. I’m sure most of you know what these are, but for those of you that don’t, they are pull-up disposable underwear for incontinence and bowel issues. Back in 2010 I didn’t yet have control over how and when I pooped. It just happened despite my best efforts. Admittedly, I cried for months on end, but eventually I found the humor in it because, for heaven’s sake, we all do it! We just don’t talk about it.
I think the most embarrassing moment came for me when I was at my physical therapist four months after my accident in my scrubs and depends. My physical therapist, who was the kindest of individuals with over 30 years’ experience of spinal cord injury, was transferring me onto a workout mat. As he was doing so he proceeded to gently whisper something in my ear.
He told me that I had basically pooped myself. I was utterly mortified. I was at a place of business and I was pooping all over his equipment. Talk about embarrassing! I put on a brave face while he called my mom and caregiver to come over to help me, but I just started laughing out of nowhere. He asked me what was so funny and I explained to him that I am an adult in diapers pooping – C’est La Vie as they say. To add insult to injury my bladder was also full and I hadn’t figured out a good catheter system at the time, so I then proceeded to pee on him as well.
Essentially I was a two-year-old. I had no control over anything. He was so kind and tried to make me laugh as I sat there as an adult waiting for somebody to come help clean me up.
Of course this was a mortifyingly embarrassing moment, but looking back, it made me tougher. It also made me realize that I know I am not the only one dealing with these issues on a regular basis.
If you are a seasoned veteran in spinal cord injury you know what I’m talking about, and if you are newly injured and reading this, just remember, it does get easier. You are not always going to poop yourself!
If you are not injured, the next time you sit down on the toilet to go to the bathroom – enjoy it. Take in the fact you can just sit your butt on a toilet and go to the bathroom. It may seem small, but it’s so big for so many of us spinal cord injuries.
- SEX That Broke The Camel’s Back
While sex did not break my back it certainly broke other things! I spent the first five years of my spinal cord injury career in and out of hospitals with major medical secondary complications. So, sex and relationships was pretty much the last thing on my mind. I was a pretty openly sexual girl before my accident and I figured I’d probably slept with enough people in my life, so if I wasn’t going to ever have sex again I could live with that … So I thought.
About five years after my accident in 2015 I literally woke up one morning after moving from China to Raleigh, North Carolina, and decided that I was going to try my hand at dating. I’m not quite sure what prompted this shift, but I have the type of personality where I just go for something if I make my mind up on it.
I dated a really nice guy who I met through a mutual friend (my online dating experiments had not yet started at that time) and he was the perfect first post injury boyfriend. He was very understanding and patient and received advice from my friend who also had a spinal cord injury. So, she basically gave him the 101 on bladder, bowel, spinal cord injury complications, etc. Of course I was so embarrassed to chat with him about the inner workings of my care giving, but I was very keen to have sex again for the first time.
I really had every intention of waiting several months to get to know them, but I was just so curious! Damn curiosity and killing the cat – in my case, curiosity killed my spinal cord injury virginity 😉
About two weeks into dating I decided on this one particular Saturday that it was the “day.” I informed him of my plans and pretty much gave him no choice. I don’t know many men that will say no to sex. I wasn’t quite sure what to expect because I wasn’t linked into many of the incredible Spinal Cord Facebook groups I am now, so I was just winging it.
I went to Victoria’s Secret to buy sexy lingerie with my mom who helped dress me up and laid me beautifully on the bed to wait for him as he arrived.
As a quadriplegic I stretch every day and I’m extremely flexible for my injury level. I felt like Barbie. You can pretty much bend me in every way possible – well, that was my theory anyway. Also, keep in mind I was unaware at the time that I had developed severe osteoporosis too.
My boyfriend rushed over to find me beautifully sprawled out on the bed in my sexy négligée. I didn’t know what to expect or how to proceed. He gently assured me that he would do all the work – as if he had a choice! In any event, I will spare you all the experimental positions we tried because I wanted to try absolutely everything to see what worked best for my body.
I will say that there was this one position where my legs were above my head and behind my ears, and I thought to myself “Damn Ali, you’re a wheelchair sex superstar!”
When we finished our afternoon of romping around in bed I then proceeded to get dressed and meet him out for drinks. My blood pressure always runs really low with my injury, but that night it was extremely low. I was seeing stars and practically going blind. I went home early and the next day when I woke up to get into my chair my blood pressure skyrocketed to 200/180. This is extremely dangerous as very high blood pressure can cause a stroke. When you are injured and cannot feel pain in the “normal” sense your body has a nervous system called the autonomic nervous system. This nervous system controls your blood pressure, sweating, heart rate, etc. Think “automatic.”
When your body is in distress from an ingrown toenail, infection, broken bone, etc. your body will first tell you by raising your blood pressure, sweating above the level of injury, and a whole host of other symptoms that are unique to each individual.
I immediately laid down and my blood pressure went back down again. I then got back up in my wheelchair and the same thing happened. I felt like I was being put through a roller coaster, so I decided to call 911 because I couldn’t find the immediate cause of what was causing the distress in my body, and I didn’t even connect the dots about sex the night before.
When I arrived in the emergency room the ER doctors didn’t know what to do with me. They told me I had a urinary tract infection, gave me medication, and sent me home. I tried to tell them that with a catheter in your body at all times one always a mild urinary tract infection going on, and that this was not the cause of my current distress. They didn’t believe me.
Fast forward to the next day – I still kept having the same symptoms. I went back to the ER and at this point the ER doctors just thought I was flat out crazy. They asked me what had changed in the last several days and the only thing I could think of was that I had had sex. It was probably not very professional, but the resident on duty laughed out loud. Admittedly, I did as well because I didn’t think I could break my body from sex for God’s sake.
They then proceeded to take an x-ray of my sacrum/tailbone area, which showed hairline fractures around that area with a lot of fluid swelling.
What did this mean? I broke my tailbone from simply having sex for the first time after my injury. I mean come on … Really? Oh yes, the nurse on duty quietly told me this one of the best stories she heard in quite a while. I agreed with her. However, how was I supposed to heal my sex injury?
Unfortunately, I was instructed to spend 7 straight weeks in bed to let it heal. I had just achieved landing myself a new boyfriend and I wasn’t sure how I was going to tell him that his new girlfriend was bedbound after only dating for two weeks. He was great though. He came by every day and nursed me through my healing process until we could once again practice having sex.
After I was all healed up I engaged in a “Safe Sex” philosophy and put to bed my theory that I was a bendable Barbie who could be twisted like Cirque du Soleil acrobatic performer!
- WHEELCHAIR DRIVING 101
The first time I was put in a power wheelchair was an absolute disaster. I sold my car prior to my injury because, frankly, I was a terrible driver. I never wanted to drive again. This left me in quite a conundrum when I was told that I was going to need to drive my wheelchair for the rest of my life.
In the early days my blood pressure was all over the map so I would pass out left and right while I was in the middle of driving my wheelchair.
I recall this one day where my blood pressure was so low, but I wanted to push through it in order to get to my inpatient rehab session. I was advised against it, but was extremely hardheaded, and decided to ignore the advice of my medical professionals.
As I was driving down the hallway of the hospital I very predictably passed out while driving. Unfortunately, my hand was on the joystick and I just kept going. When I woke up there was a horde of people surrounding me, but not really for me. I had run over a nurse. To make matters worse, I not only ran her over, but I broke part of her foot.
Apparently, I ran straight into a wall, her foot was in my way, and they couldn’t back the wheelchair up because I was completely passed out. I felt so badly for her and she took it like such a champ, but if I can it offer any advice to those that are newly injured it would be to literally take it slow, put your wheelchair on the slowest mode possible, and take your time.
I have run over countless people’s toes and feet over the years even after 10 years. In fact, I just ran over my caregiver’s Achilles’ heel just yesterday on the way up to my physical therapy appointment. It pretty much comes with the territory of wheelchair life.
One advantage is that if you run into someone who is extremely rude or aggressive, you can claim temporary insanity, and just run them over! I mean who’s going to sue someone in a wheelchair who ran them over;)
I have countless stories of embarrassing moments, horrified moments, dark humor moments, and so many more stories that I’m sure so many can relate to in one way or another. Sometimes I like to take a moment out of my day to stop and appreciate how far I’ve come, laugh along the way at the moments who have made me who I am today.
Most moments in my life whether they be positive or negative, always come with dose of dark humor in retrospect. If you’re having a bad day or something seriously embarrassing happens to you, try and find some kind of humor in it because there’s usually always a good story behind it!