“SCI” SUPER MOM’S – An Endangered Species!

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A little over 10 years ago BBC produced a television mini-series called “Planet Earth.” They spent five years filming unique exotic environments, plants, and animals all over the world. There was one episode where the film crew spent months in subzero Himalayan temperatures trying to film the endangered snow leopard. After many failed attempts they finally caught the snow leopard on camera for the first time. These leopards are so unique and not many exist, that we know of, in the world today.

An “SCI” (Spinal Cord Injury) Mom is an endangered species of human being, like that of the snow leopard, that are far and few between throughout the world. In general, the bond between a mother and child is so unique and unbreakable. When a child has a severe injury, such as breaking their neck, a mom goes into protection mode in order to provide the safest, best, and happiest environment for their child. However, not all moms are cut out to be SCI moms.

An SCI mom goes above and beyond, dedicates her life to her child, puts their needs above their own life, and puts up with more heartache than perhaps even the child going through the injury themselves. Generally a child starts fleeing the nest in their 20’s, starts their own life, and the parents move on to other adventures in their life because while their job is never done, the daily nitty-gritty caring aspect for their child is complete. With a spinal cord injury the reverse happens.

   

A dedicated and loving family member puts their life on hold once again to care for their injured child as if they were a baby, but it never ends. However, you must remember that if you do have a spinal cord injury, and while your life changes forever it can be easy to take your mother, father, brother, sister, etc. who takes care of you for granted. Sometimes we forget that those taking care of us have their own lives, but we expect them to give up theirs to take care of us anyway. Many of us are extremely grateful, but there are many, I believe, who forget what an unbelievably immense gift it is for a family member to practically give up the rest of their life for you, to make sure you are always well taken care of if a caregiver leaves, if you get injured, have an infection, go back to the hospital, etc.

A mom does not have to give up her life when their child is injured, but there are a select few that choose to and this is not to be taken lightly or for granted … EVER!

I am unbelievably honored and humbled to say I have a Super SCI Mom. She has always been a super mom to her four children, but when I was injured at 27 years old she once again put her life on hold to take care of me at 65 years old. I have a very special German mother in the sense that she may be 71 years old now, but she runs around and has the energy of a 40-year-old. She is truly the kindest, most loving (not to mention a gorgeous knockout:), and caring individual I know with respect to giving her time to me.

I am at a medically stable point where I do have a life, friends, a loving boyfriend, and constantly try to urge her to go do other things, but she still stays near me because she is always my right-hand woman in any situation. She has been there through the thick, the thin, the depressions, the surgeries, the nightmares, etc. There is no one else like her, nor will there ever be.

There is a flipside to this coin though … In general, I never went through great depression after my injury. I always remained quite positive because I have a great support system, internal drive to constantly try and succeed at whatever I do, push forward, and maintain a positive attitude doing so. I’m sure if I took my injury out on her, as so many of us unintentionally due to family members sometimes, she would still be here, but we would not have the incredibly close relationship we have now. When you are injured it is important to remember that you are not the only one suffering, but the people around you who love you can sometimes suffer even more than you from a mental perspective.

I take full responsibility for my health care and double check everything that is done to me with respect my caregiving. It has become an instinct because I’ve been injured by so many people over the years. However, I must say that when I am with my mom she is the only one I don’t have to think twice about double checking anything on. She’s always got my back and I know how rare this is.

I could go on and on about what this woman has done for me, but suffice to say she has literally saved my life countless times. There have been some pretty hilarious and horrifying stories along the way, which I would be remiss not to share a few.

The Major Pressure Sore

I’ve written about it before, but to make a long story short I developed a very large pressure sore over my tailbone because I was born with an extra vertebrae. It resulted in a hole approximately 4 cm deep in my behind. Oh my mother… She would not let the doctors, nurses, or caregivers touch me when it came to caring for this wound.

Like a surgeon, she would clean my wound out every day with sterile saline water, change the gauze, put a bandage on it, and neurotically direct exactly how I needed to be positioned in bed. It could’ve been an episode from Grey’s anatomy when we were in the ICU together as she shooed all medical professionals away from me insisting she could do it better, more safely, and prevent infection. Boy was she right!

While I may have been in bed for a year and had to undergo major surgeries, my wound never got infected, and, in fact, I was told by multiple doctors I had the most beautiful hole in my backside they had ever seen. Go figure!

Plane Rides

In 2013 I developed a massive cyst in my spinal cord and I moved to China for surgery because many of the surgeons in the United States would not touch me. We were preparing for our long journey across the globe over to southern China. It was quite an undertaking moving a quadriplegic across the world, but even more daunting thinking about how I would not get a pressure sore sitting in an airplane seat for 15 hours.

My brother loaded me on the plane with my wheelchair cushion to sit on. However, when you are paralyzed and flying there is a high likelihood of blood clots to form in your legs, and potentially travel up to your lung creating a pulmonary embolism, which are quite fatal. I’ve had one before and I can tell you from experience they just suck. I wish I had a more eloquent word to describe pulmonary embolisms, but I don’t 🙂

In order to avoid any kind of blood clots, pressure sores, and wrinkles in my cloths — my wonderfully crazy & quirky mother got up every 30 minutes, even when I was sleeping, to wiggle my toes, massage my legs, stretch my legs, etc. The funniest moment was when I woke up and I found her hands under my bum massaging my Buttock … I looked over at the passenger next to me who just couldn’t figure out why this lady was putting her hands under my bum. It was one of those priceless moments. I don’t know many moms who would do this for their child.

Catheter Changing

When you are first injured you are taught how to put a catheter in your urethra to pee. There are many other operations you can have where you don’t have to pee of your urethra, but in the beginning this is generally the starting point. Therefore every few hours you have to take your pants down, sterilize a field with gloves, catheter, beta-dine, etc., and carefully insert the catheter into the urethra. For women this is a little bit trickier because the Vagina and the urethra are right next to one another, and it can be easy to slip the catheter into the wrong hole. I know … probably more information than you were bargaining for, but these are just some of the realities we have to deal with with spinal cord injury.

If you insert the sterile catheter into the vagina, where there is a ton of bacteria, and then try to put the catheter back in the urethra right away chances are you are 99% likely to get a urinary tract infection, which if you are paralyzed, are way too common, potentially dangerous, and extremely painful. Think double dipping … maybe ok for veggies & dip – Not for catheters;)

Anyway, when I was in rehab it was the nurses job to cath me every few hours. The problem was that I was getting an infection every week and was completely miserable. One night my mom decided to take a flashlight and watch one of the nurse’s cath me only to realize she was missing the urethra hole, sticking it in the wrong hole, and then trying to put it back in the urethra.  No bloodly wonder I kept getting urinary tract infections!

From that point forward my mother and other family members would hover over the nurses with a flashlight to double check that they were cathing me properly and not screwing up. I’m fairly certain the nurses were cursing my mom when they left the room, but that woman was completely and utterly relentless. I found it terribly amusing, well, as best I could at the time, because I essentially had a guard dog at my back at all times. My sister was just as voracious in the hospital as well with respect to making sure no one injured me after one nurse killed me one night and I coded.

My Dark Period

When I was living in China and underwent spinal surgery, which saved my life, it also resulted in severe permanent chronic neck pain with a neck brace for three months. To top it off the Chinese physical therapists proceeded to break my leg the next month. So, I was in bed for many months to follow with pain that I had never felt before in every cell of my body. I could not think, talk, or put together a coherent sentence. I did not want to go on, live, or think about creating any kind of life with the pain I had to endure at the time.

My mom was there every night and every day, wiping the sweat for my forehead, wiping the tears from my eyes, whispering “I love you’s” all day long,  holding me when I was absolutely inconsolable, and constantly going above and beyond. I can’t even imagine the pain that she was feeling on a daily basis too.

Don’t get me wrong … My entire family supported me and continues to support me in all of the important ways, but my mom is the one who has been and continues to be in the trenches with me on a daily basis. This takes time, dedication, and, in my opinion, the ability to give up a part of her life for me, which not many folks are prepared to do.  Oftentimes I have feelings of guilt with respect to how much she does for me, and I try to get her to go live her life, but she is still always there with me.

In an emergency the rest of my family, of course, would be there, but they have their own lives, and have to live theirs.

Conclusion

If you are lucky enough to have someone in your family like my SUPER SCI MOM, for God sake, stop or you are doing, go give them a hug, and tell them how unbelievably grateful you are for everything they do for you!

I cannot possibly imagine what I would do without her even though one day I know the time will come. For the moment, I treasure every moment I have with her even if we drive each other a little bit crazy sometimes 🙂

 

 

 

 

A Day in a Life of this Quadriplegic – Managing Expectations

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I’ve often been asked what a typical day looks like for me as a quadriplegic (quad). While every quad is different I can confidently generalize that with being paralyzed and fully dependent one has to spend a minimum of several hours a day dealing with general spinal cord injury care. I can only speak to my personal experience, but over the last 7 years I’ve had to widely adjust my expectations about how much I can get accomplished in a day.

Regardless if you suffer from a spinal cord injury or not, one has to manage their expectations on a daily basis. If you are a mother of four small children or a high-powered attorney who has a full docket of cases to review with a family at home, how you manage your time is essential.

I am the type of person who likes to be extremely productive and utilize every moment of every day in order to learn something new, enjoy life, trying to things, and get things done. I have a full-time job, which requires immense attention on a regular basis. This does prevent me from getting out and about as I would like during the weekdays. However, this is my choice and professional productivity is very important to me. The challenge with being paralyzed is that you have to devote so many hours a day to general survival for your healthcare.

I was calculating out the amount of hours I spend on essential spinal cord injury care each day, how much exercise I engage in, how many hours I need to work, and most importantly, how this all fits in with my constant chronic nerve pain that feels like pins and needles piercing my body every moment of every day. Needless-to-say this can be challenging.

It turns out that I need about 4 hours at minimum to complete my bowel and bladder care, shower, getting in and out of bed, and general caregiving activities each day. I then exercise for about 1.5 hours a day. These are the essentials I need just to survive on a daily basis. The particular challenge with respect to my situation is with the chronic nerve pain that plagues me on a daily basis because my productivity goes way down mid-afternoon. This means I need to get in bed early, relax, meditate, and try to re-direct my pain in order to sleep well to be productive the next day.

I generally get most of my busy work done in the morning, work quietly until mid-afternoon, and then get in bed early.  Over the years I’ve pushed myself to the brink of exhaustion, pain breakouts, and complete misery with trying to get too much done in a day. I’m not including the periods in life where anxiety or depression can take over, which can further drastically reduce one’s productivity in a day due to emotional up’s and down’s.

What a typical able-bodied person gets done in a workday of approximately 8-10 hours I have to get complete in no more than 4 to 5 hours. Continue reading

CAREGIVING – Living in Fear or Trust

The topic of caregiving is a very tricky one to navigate. This is an extremely sensitive topic for me and can be challenging for me to even write about.

I preface this blog by stating it is written from my personal and dozens of other spinal cord injury folk’s perspectives with respect to our experiences. As a quadriplegic, paralyzed from the chest down, I am fully dependent on another human being for my daily care from bathing, bowel program, catheter changing, dressing, cooking, etc. It can be tremendously challenging to have to rely on another human being to take care of you on a daily basis. But unbelievably heartening to know that there are people out there who dedicate their lives to wanting to help others.

The read the rest on Push living magazine at: http://pushliving.com/caregiving-quadriplegic-living-fear-trust/

My Experience with Dating a Woman in a Wheelchair (Written by my Boyfriend)

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Recently Aaron, my boyfriend, wrote an awesome article on Push Living Magazine talking about what it is like to date a woman in a wheelchair. It’s a pretty cool article, which you can read on: http://pushliving.com/dating-disabled-woman/

…  The real question at the time was, did the chair bother me? Clearly, I am in love with the women, so, no it did not deter me from dating her. I suppose most guys have a million questions running through their head when starting to date a woman in a wheelchair, but when I met her, I didn’t see the wheelchair …I saw her…

 

 

 

DEVOTEES – People who are ATTRACTED to Folks in WHEELCHAIRS

Six months after breaking my neck in 2010 a gentleman sent me a Facebook message telling me that he thought I was very cute and he wanted to suck my toes. He informed me he was a Devotee. Of course I had no idea what this meant at the time, so I asked around to some of my other friends who had been injured longer than I had. They told me that a Devotee is a person who is attracted to folks in wheelchairs. I was then advised to stay away from them at all costs because they were very creepy and that it was unnatural for people to be attracted to just the wheelchair.

This got me thinking. There are so many people out there in the world with all kinds of fetishes from being tied up, whipped, electrocuted, swingers, etc. I was curious as to why someone who is attracted to people in wheelchairs is any different?

Can we really help who we are attracted to?

Some guys like big breasts, overweight women, blonde hair, blue eyes, etc. Just because you don’t frequently hear about people attracted to other people in wheelchairs does not make it, in my opinion, creepy right off the bat. Of course there is always a small segment of the population in any group who give the rest of the group a bad name.

Think about it … That macho guy who slaps women on the ass, calls them “sweetie,” and may tell them that he likes their big breasts. This type of guy gives other guys who like women with big breasts a bad name. There are plenty of men who like women with big breasts, but they don’t necessarily advertise this publicly at first. They may go up to a woman, start a conversation, get to know them, and later on in the relationship it may come out that they were initially attracted to that specific woman because of their breasts.

I think one of the challenges with folks who are Devotees is that it is such an unspoken attraction that no one talks about. First of all, from a number’s perspective, there just simply aren’t as many people in wheelchairs in the world as there are women with big breasts. Secondly, there are many Devotees out there who don’t put their picture on Facebook and then write you a creepy message. Clearly, this is not the best way to initially garner positive attention from a person in a wheelchair. Devotees should probably strike up a conversation and get to know them before announcing they are attracted to women in wheelchairs.  This has personally happened to me countless times.

Several years ago when I was living in China I was approached by a “Devotee.” He messaged me on Facebook to tell me that he thought I was attractive and that he was a Devotee. I decided to take that particular opportunity and dive into really understanding what it was about women in wheelchairs this guy was attracted to.

He was from Switzerland, physics was his passion, good looking, and he had a very well-to-do job in the gaming world. We struck up a series of conversations, which I’ve saved over the years, and I learned that he was specifically attracted to quadriplegic women in power wheelchairs. He seemed to like paralyzed feet quite a lot, massaging them, and the idea of helping women cut, and eat their food. At first I thought this was a little odd, but I tried to remain open-minded as I probed further. Fortunately, he was very polite and only asked progressive questions when I permitted them. He told me that he saw a woman in a wheelchair in a magazine when he was a teenager and there was an unbelievably strong attraction right off the bat. From then on he was fascinated and drawn to women in wheelchairs.

Once we got past all of his questions about what I had to deal with on a daily basis in a wheelchair I finally got to know him as a person. I think he was just so curious because he said no other women in wheelchairs would give him the time of day. I asked him, as I have asked dozens of Devotees over the years, if he leads with telling women he is a Devotee? He said yes as many others did as well. I did tell him this probably was not the best way to get the attention of any woman. I planted the idea in his head that if he was attracted to a woman with big breasts would he Facebook message them to tell them he thought they were attractive because of their big breasts? He said he certainly would not do that … Well, I told him it was the same concept with a person in a wheelchair.

While there are always exceptions to the rule, many women want to find a guy who sees them and not just the wheelchair. Of course with guys who are not Devotees many of them only see the wheelchair, decide it is too much for them to handle, and do not get to know the person or even give them a chance. Continue reading

How Negativity Creates Chronic Inflammation – 2 Outlooks on Life

Check out my new Quirky Quad Column on Push Living Magazine: http://pushliving.com/danger-how-negativity-about-disability-can-create-chronic-inflammation/

…. One of my favorite songs is by Bobby McFerrin called “Don’t worry, Be Happy.” This song makes me giggle every time I hear it… Go ahead and have a listen before you read the article because I bet you will have slight wrinkles turning upwards on your mouth that resemble something like a smile!

When things go wrong I always play this song, which, admittedly, many ICU nurses may never want to hear again with the amount of times I had it on repeat over the years. Such a simple motto, yet very hard to execute at times …

… We are only human. Negativity, depression, anxiety, and the stresses of daily life are part of the human condition. With that said, this column is not meant to be a guide for how to promote positivity per se, but make folks aware of how negativity in your life can create chronic inflammation, and make you sicker than you need to be. How can you fix a problem if you are unaware of it? Just like an alcoholic cannot proceed down the road of healing unless they are aware they are an alcoholic to begin with …

…. A negative frame of mind can create a self-perpetuating downward spiral of agony that may seem impossible to get out of. Those of us with spinal cord injuries deal with more challenges than seem fair on a daily basis. There are always those who have a situation worse than yours and better than yours. This is life …

Read the rest: http://pushliving.com/danger-how-negativity-about-disability-can-create-chronic-inflammation/

 

“HOW I (Unexpectedly) FELL in LOVE — The REAL VERSION”

 
My Online Dating Mission:

… Sleep with as many guys as I could in order to explore my spinal cord injury sexuality before it might be too late. A simple mission you may say … A ridiculously irresponsible mission others may comment … A wildly insane mission yet others may respond. To me, it was the most fun, wild and exciting thing I could think to do before I went under the knife once again for a seventh time in six years….

… My now boyfriend was one of these gentlemen callers. I really did like him and thought he had a lot to offer, but I certainly wasn’t going to ask a guy I met 4 to 6 weeks prior to hang around with a C6 quadriplegic who was going in for major surgery, who was going to be laid up in bed for God knows how long, and with hundreds and hundreds of staples in my ass. I simply didn’t think this was fair to ask, nor did I want any man I had been sexual with to see me in the ICU….

… As the months rolled on we really started to build a bond with one another and it was a completely new and unexpected feeling for me in life. Forget the wheelchair for a second … Apparently I had never learned how to be in a proper relationship. I had dated guys for years in the past, but I always made sure I had 1 foot out the door as a defense mechanism. My boyfriend completely turn this around for me, and, essentially, taught me how to love….

Read my new column on Push Living Magazine: http://pushliving.com/spinal-cord-injury-sexuality-how-i-unexpectedly-fell-in-love/

Forget About Setting Goals – Reducing Psychological Paralysis

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A few weeks ago I had a psychological epiphany with respect to my life over the last 7 years since my accident, and probably way before that too. I was reading an article by one of my favorite authors who focuses on writing about behavioral psychology, James Clear (www.jamesclear.com). He writes on subjects such as habits, performance, and just generally on topics regarding self-improvement based on proven scientific research. He had a very interesting article on letting go of your goals and focusing on process instead.

When I first started reading this article I thought to myself “I’ve always lived my life by setting specific goals and trying to achieve them.” However, what I did not realize throughout the course of my life, and especially since my accident, is that goals have actually been hindering my progress and reducing my current happiness.

Don’t misunderstand me, having  general goals are important as they keep you focused towards trying to achieve something very specific. What I did not think critically about was that when you are working towards a specific goal you are essentially saying “I’m not good enough yet, but I will be when I reach my goal.” The problem with this mindset is that you’re teaching yourself to always put happiness and success off until the next milestone is achieved. “Once I reach my goal, then I’ll be happy. Once I achieve my goal, then I’ll be successful.”

The wheels in my head started turning to where I took a day off work to think critically about what he meant. Throughout my life I’ve always been taught to work hard, think critically, create a specific goal, work my ass off until I achieve that goal, and success will follow. So, clearly I had defined success to equal happiness in my life. Interestingly the exact opposite has happened to me over the last 7 years of my life since I broke my neck.

Continue reading

How I Vacation as a C6 Quadriplegic

Check out my new column on Push Living Magazine:  http://pushliving.com/how-i-vacation-as-a-c6-quadriplegic/

 

… Taking a vacation as an able-bodied person takes planning, but as a quadriplegic, well, it is way more complicated! …

I wasn’t quite sure where to start. In the past I would just find a cheap plane ticket, a cheap hotel, pack a bag and be on my way. Clearly life is not so easy anymore with respect to planning after you break your neck. There are so many things to consider, such as:

  • Who is going to take care of you when you’re down there
  • How accessible are the rooms? Can you get in the bathroom? Is the bed too high
  • Is the city handicap accessible
  • How on earth are you going to fit so many supplies in your suitcase for emergency
  • How am I going to get on a plane or fit everything in the car?

http://pushliving.com/how-i-vacation-as-a-c6-quadriplegic/

 

My Intimate Experience with a Paralyzed Guy BEFORE My Accident

When I was strolling along the Art Deco streets of South Beach with my boyfriend this past month while on vacation in Miami I stumbled across one of my old stomping grounds … A beat up Irish pub called the Playwright where I would love to dance and get into trouble. I couldn’t resist popping in for memory sake when a flashback hit me of an experience I had with a gorgeous man in a wheelchair.

Beautiful South Beach

I must have been 24 years or so when I was out late one night and I spotted this beautiful man sitting at a table with his friends. I’ve always been the type of person to go up to random people and start talking to them. I walked over to the table, took a seat, and decided to strike up a conversation with the group. They happened to be from Australia and I have always been a sucker for Australian accents.

I was attracted to this one guy in particular and we started flirting. Continue reading