There’s an art and a science to pretty much everything in life and surviving for weeks on end in the ICU is no different. With a majority of medical professionals being woefully under trained in all of the secondary complications accompanying spinal cord injury, the thought of trying to stay alive while you’re in the hospital can be a daunting prospect -especially when you have to play your own investigator in assisting these professionals with your diagnoses.
However, while there’s definitely a certain amount of research, planning, and preparation that needs to be thought out by the patient when you are essentially locked into the hospital by your medical professionals; you can have a little fun with it as well. Living on the edge of life and death, as many folks with spinal cord injury will very likely attest to, I find taking a dark humor outlook on most situations to be healing for my body, and my soul.
Despite my long ICU stay in 2016, I maintained a cheery disposition, but this time I decided to do something a little bit wackier to pass the time. What pray tell did I do you may ask?
The other day I was working with my caregiver and I caught myself thinking about some of the things I ask for on a daily basis, and just how unbelievably bizarre they must sound the average able-bodied person.
I started to make a list of these particularly humorous statements that most people would consider very peculiar indeed! I found myself laughing out loud because I thought back to my life a decade ago and how I never would have thought I would catch myself asking people to do these particular tasks for me. To end the year on a funny note amidst a year of complete chaos I hope to leave you with a chuckle by the end of this article.
I’ve written about this topic numerous times, but when you are paralyzed you need help going to the bathroom. Plain and simple. When you (an able-bodied person) go to the bathroom you simply sit down on the toilet and poop. I, along with most other spinal cord injury folks, especially quadriplegics, do not have this luxury.
I do not have the ability to use my abdominal muscles to push out the poop. Probably too much information, I know, but that’s life. In any event, I have to put a suppository in my bum, let the poop come out, and then I have to have my caregiver put gloves on to go into my behind to get the rest of the poop out. Yes, it’s a pretty involved process, not particularly pleasant, but, hey, it is better than the alternative of going to the hospital because you can’t poop.
So, every morning during my “Morning Program” I ask some of the following questions:
1.)“How much poop did you get out of my bum?”
2.)“Okay, can you put your finger in my bum now to get the rest of the poop out?”
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. Continue reading →
I’ve always been curious by nature whether that be understanding the physics of a white dwarf star in our universe or diving into the world of neural plasticity to study how the brain can change itself or simply figuring out why human history always seems to repeat itself. There is no topic to simple or complex that doesn’t intrigue me in some fashion.
Over this past weekend I took a few hours, as I often do on lazy Saturday mornings, to poke around the Internet to stimulate my intellectual curiosity on unknown topics. Much to my surprise, I stumbled upon a short video clip produced by Business Insider Today on the topic of the Digital Sex Industry. I must admit this is not a topic I have given much thought to, or ever for that matter, but it piqued my curiosity leading me down my proverbial inquisitiveness rabbit hole.
The wheels in my head started turning as I was thinking about sex, which many of you know I’m very open about and cannot understand why sex is such a taboo topic to discuss in public – much like money or religion. In any event, I wanted to explore the rise in the digital sex industry over the last several years, and in particular, how the industry has changed over the last two months in light of Covid-19. Continue reading →
In light of world events and the seriousness of everything many of us are going through with Covid-19 I thought it might be fun to talk about something completely off topic and also nothing related to spinal cord injury either!
The following is a tale of my adventurous and crazy exploits when I lived in China at a ripe old age of 17 and how I managed to land myself in Jail in Northern China near the border of Siberia.
I graduated high school at 17 and had no desire to rush off to college as so many do. I decided to defer my acceptance into college for a year or so, but I had no idea where I wanted to go or what I wanted to do. I walked into my father’s office and found one of those globes that spin around in a circle. I closed my eyes and my finger landed on Beijing, China. Continue reading →
It all started with two little pills – one from above and one from below …
There are not often medical stories in my life that end up in giggles, smiles, and rainbows, but I am proud to say this one did!
In my adolescent years of spinal cord injury I developed several pulmonary embolism’s causing me to take blood thinners for several years. As a result, high levels of estrogen in my blood (found in many contraceptive pills), which have the tendency to cause blood clots, would forever leave me in a situation where estrogen could quite literally kill me. This posed a challenge for me as I became sexually active several years following my accident.
In my particular case, becoming pregnant would very likely result in my untimely demise. Needless-to-say after being killed by several medical professionals years earlier due to a cockup with a certain medication; I was not particularly keen to repeat this experience nor have a little bun in my oven of my own. Continue reading →
The last five weeks have been a world wind of adventure and new beginnings for my husband and me. We went down to Miami for three weeks in the middle of October for our annual relaxation and recharge trip to see friends, family, and explore new handicap accessible adventures.
We returned back to Raleigh, North Carolina to quickly close on our first condo home together! It’s been nonstop the last two weeks working with contractors to make my bathroom accessible before we move into our new home in the New Year. So many wonderful changes, but we’ve been busy. So, I apologize for the Quirky Quad hiatusJ
While we were in Miami we were surrounded by friends and family on so many adventures, relaxing at Tiki hut bars, having piña colada’s at sunset, taking accessible boat rides at Shake-a-Leg sailing school, and so much more.
However, this year I really wanted to be able to get into the ocean, snorkel, and go on new adventures. I looked far and wide, but I could not find any accessible boats that had a seat to lower me into the ocean so I could go snorkeling with my husband.
I broke my neck in the Bahamas 9 years ago at my home and other than a brief dalliance in the ocean on a cruise in Mexico two years ago, I’ve been unable to get back into the beautiful waters of the ocean. I’d like to head back to the Bahamas in the next year or so, but I wanted practice to make sure I could swim as well in the ocean as I am able to in the pool.
On our trip to Miami last year many of my wheelchair friends told me about this gentleman named Captain (Capt.) Mick who runs a nonprofit organization called Tranquil Adventures in Key Largo (https://activedisabledamericans.org/). Somehow time got away from us last year, but this year I was determined to make it happen. Continue reading →
“Inspiration Porn” is a term I have been reading about lately in many articles across different forums. At first I was confused as to what was behind the meaning, but from my understanding, it’s when people who don’t know you see you in a wheelchair, approach you, and tell you what an inspiration you are. Mind you they don’t have any back story on who you may be except that they see a person in a wheelchair or with a disability. They then proceed to tell you what an inspiration you and I assume it is meant for simply being in a wheelchair.
There appears to be much controversy over this as many folks, whom I have spoken with, are not necessarily offended, but frustrated at the fact that able-bodied people see them as an inspiration for just having a disability. You may be a lazy person with no ambition, but simply because you are in a wheelchair you are an inspiration to them. I can certainly understand why this would aggravate many because people with disabilities since they just want to be seen as “normal” people who are complemented on being inspiration for what they do; not just for the fact that they are in a wheelchair.
However, I have a slightly different outlook and perhaps my dark sense of humor might contribute to this, but when someone calls me an inspiration even when I am just sitting quietly in a corner I always seem to find myself chuckling in amusement. Also, I love to be different and my wheelchair is just one part of my life that sets me apart from many others.
Aaron and I are getting married next Saturday, May 18. We’ve invited 70 of our close friends and family. Originally we started with only 30 guests, but somehow we’ve ended up with 70 guests 🙂 It’s going to be such a magical day as there are so many family friends I have not seen in over a decade. We have a weekend full of events to celebrate. We are very excited and scrambling to finalize last-minute details.
Unfortunately, I’ve developed bronchitis at the most inopportune time and have been battling it for the last several weeks. I have one week to go before the wedding and I am doing everything in my power to get well quickly.
It’s been a challenging several weeks as bronchitis for quadriplegics can be immensely difficult since we do not have abdominal muscles to help us cough up that nasty phlegm associated with bronchitis. It’s not a pretty sight! However, dealing with any kind of illness as a quadriplegic requires help from caregivers, family members, and loved ones. I’ve had a team of people helping me over the last several weeks for which I am extremely grateful.
I have locked myself down in my house for the last 3 weeks and have had many hours to rest, read, and recuperate. I came across this article written by the New Yorker on the topic of “What Romance really means after 10 years of Marriage.” The basic premise of the article addressed how the definition of a romance and sexiness changes after a decade of marriage. This really resonated with me because from the perspective of dating a person with a disability I find that Aaron and I have transformed our definition of romance in just a few short years, which I suspect takes many couples a decade to achieve.
The other week I was watching my fiancé wake up in the morning to get ready for a trip he was preparing to embark on. As I watched him bright and early in the morning I thought how seamlessly he could get ready as compared to myself. When he felt the need to go to the bathroom, he simply went; when he wanted to brush his teeth he just grabbed a toothbrush and started brushing; when he was ready to put his clothes on he picked up both his legs, put them in his pants, and zipped up his fly. These may seem like trivial things, but I was watching in complete amazement because these are things that I need help with on a daily basis, and will continue to need help with for the rest of my life.
There is a topic, however, whether you are paralyzed or not, that is just kind of taboo to talk about in society. Bowel and Bladder. Going to the bathroom is such a natural function that we all go through every single day and many of us do not give it a second thought. When you feel the need to pee you sit down on the toilet and go. When you have to poop you sit down on the toilet, push, nature takes its course, and you’re done. These are not things you generally want to think about as many couples who have been married for decades still close the door when they go to the bathroom. I, on the other hand, need help with these functions all day long.
You see, when one sustains a spinal cord injury the nerves that control how you go to the bathroom are wrapped around the coccyx area of the spinal cord. This means that no matter what level of spinal cord injury you sustain whether you are a quadriplegic or paraplegic, your bathroom functions will be impaired — No matter what! However, there are some folks with spinal cord injury who do have some control, but if you are a quadriplegic like myself, it is likely that you have pretty minimal control of going to the bathroom on your own, feeling when you need to go to the bathroom, or are able to do it by yourself.