They say it takes a village to raise a well-rounded child. While this may not be the case in the modern times we live in, in the past, an entire community would watch out for a child while their parents went out to work to provide for their children.
I think similar parallels can be drawn today when a person has a traumatic injury, disease, or disability. If you are on your own with no support or help when you break your neck, for example, life can be infinitely more challenging with an extremely bleak outlook for life without the support of family, friends or community.
Of course, there are always exceptions to the rule, but I have generally found most quadriplegics go on and live the most fulfilled lives they can with an immense amount of support behind the scenes of their life.
I can personally attest that I would not be where I am today without a Herculean effort from my family and closest friends. This article is dedicated to more people than I will be able to thank personally in helping me survive the ICU in the early days 9 years ago to walking down the aisle just a few weeks ago.
When I was first injured we didn’t have a clue if I would survive or what life would have in store for me if I did survive. I have the kind of family and friends that should be written about in the history books for the efforts they expended to getting me back on my feet.
When I woke up from surgery after just having broken my neck life was a complete daze. I was surrounded by my immediate family and one of my best friends in life who I’ve known since I was 12 years old, Kira. Everyone told me it was going to be okay as I was constricted in a neck brace with tubes coming out of every part of my body, and not knowing what being a C6 quadriplegic would entail.
One of my first memories was thinking days after my accident that I had not peed. I was bewildered and started to panic. One of the nurses, very nonchalantly, I might add, told me I had a catheter in my body to help me pee. I was vaguely familiar with catheters prior to my accident, but I did not have many friends that were disabled, so I wasn’t well versed with the concept.
I asked her when she would be able to take it out and I would be able to pee on my own. She sweetly and sympathetically smiled at me and told me that this was going to be a permanent addition to my life. It then dawned on me at that moment that life would never be the same.
I often remark that a big piece of me died that day. I was going to have to build a whole new life from scratch at 27 years old, but I knew I was not going to be able to do it alone. Frankly, I don’t know how folks who don’t have support systems do it alone and I commend those who are able to get back on their feet by themselves. However, thankfully, I was not alone.
Several weeks into one of my many ICU stays at the hospital one of the nurses killed me. I was on a drug called dopamine, which regulates blood pressure. When you break your neck your autonomic nervous system gets knocked off-line. Think of this nervous system as your “automatic” nervous system, which controls processes you don’t think about. It controls your sweating, your blood pressure, your heart rate, etc.
Anyway, it takes several weeks for your body to attempt to regulate to its “new” normal, which includes your blood pressure. If your blood pressure goes too low, you pass out, and you can die. Therefore this life-saving drug is an absolute must in “spinal cord injury survival.”
The nurses put the dopamine drip on a machine and calibrated the amount of dopamine to the machine, so when the machine runs out it alerts the nurses to put in a new bag. I had had these 500 mL bags of dopamine, but they ran out. So, they switched me down to a 250 mL bags of dopamine, but they forgot to reset the machine to let it know there was less dopamine.
To make a long story short I ran out of dopamine, coded with my mom and sister in the room, and the doctors made quick work of reviving me.
Needless-to-say, I was panicking for my life as I was not sure who or what might kill me next. My family, a few very close family friends, Kira, and several other friends all made the decision they were not going to leave me alone for the next two months while I was in the ICU and rehab.
I’m not quite sure if you comprehend what this means, but they had to coordinate all of their schedules to fly into Miami and do 5 to 7 day rotations with me in the hospital. I might’ve been tired, but I can’t even imagine the amount of schedule shuffling and planning they had to go through to be there for me day in and day out through the nitty-gritty.
In fact, I felt so much love and support that I was borderline crazy happy in rehab. I wore bright neon scrubs every day, put makeup on, had pigtails put in my hair, and joked around with patients and therapists on a daily basis. I’m not sure if they thought I was in shock or just an unusually bizarre happy person for just having broken my neck 🙂
My time came and went in the ICU and rehab, but the real challenge of life started when I went home. It’s easier to temporarily adjust ones schedule to be there for loved ones in an emergency in the hospital, but quite another to be there consistently for a person in the long run when you have your own life to deal with. However, I am so blessed to say that the support did not stop when I left rehab.
I had my sister come visit me from Raleigh, North Carolina every 4 to 6 weeks for several days, my mom and dad were living with me, my brothers came to visit me every month or two, my best friend Kira came to visit me every month or two as well from Orlando, Florida despite being a newlywed at the time. I also had my Miami friends come over every weekend to try and take me out.
The first two years after my accident was particularly challenging. I had a myriad of medical challenges, bowel and bladder issues, and pain issues. What I went through, as so many do who are newly injured, would have been enough to throw any sane human being into a spiraling depression.
While I did go through ups and downs and a major depression years later, the first two years were so busy with rehabilitation, visiting friends and family, and an intentionally busy schedule that I didn’t have time to feel sorry for myself or think about what I had lost. I had people left and right of me constantly propping me up, pushing me forward, and being there for me every step of the way.
I wasn’t really on Facebook yet at the time in 2010 and I had not joined any of the fabulous Facebook SCI groups, which have since helped connect me to an incredible community of fellow SCI folks. So, my primary source of support came from friends and family I knew personally.
I did connect with several fellow SCI folks around the community, but it was hard for me to really get active in so many of the wonderful activities going on around Miami because of my constant medical issues at the time.
Even when I moved to China several years later with my parents for spinal surgery I had my family and a few close friends come for visiting rotations to keep my spirits up. Living in China was probably one of the loneliest periods of my life, but without my family and friends, I definitely would not have made it.
As many of you know I walked down the aisle several weeks ago and finally became a married woman. I did not think love and marriage were in the cards for me, but life can surprise you in the most unusual of ways.
I honestly believe I would not have gotten married if it were not for the unwavering support and love of my family.
I have to pause for a moment and give my mother an immense amount of credit for who I’ve become since the accident.
My mom, oh my mom, she is what I call in the field a “SUPER SCI MOM.” I have dedicated several blogs to her, but no amount of words could possibly do justice for what she has done for me over the last 9 years, and not to mention my entire life. I have had so many people there for me left and right, but my mom was and continues to be the one in the “trenches” with me every day over the last 9 years.
While so many families are there for their loved ones after an accident like mine, they are under no obligation to be there day in and day out, year after year.
My mom and I have always had a fabulous relationship to begin with, but we grew even closer after the accident. I’m acutely aware that so many family members find the nitty-gritty of spinal cord injury care to be daunting in the long run. My mom always has a smile on her face, love in her heart, and undying devotion to me and her family. The support from my mom and the entire family has kept me positive over the years.
On a funny note, when I had a giant pressure sore on my tailbone and I was heading into surgery in 2016, as many of you know, I embarked on a dating bonanza expedition. I wanted to explore dating in a wheelchair further before heading into a major surgery considering I was not quite sure what the outcome would entail.
Anyway, I probably would not be married without my mom because she helped pack my wound to hide it from the guys I was dating, helped me get ready to go meet all of these gentlemen callers, and supported me unconditionally.
I’m pretty sure most mothers probably would have tried to keep their daughters in bed considering they had a giant hole in their backside, but not my mom, she supported and promoted my activities 100%.
She helped me pick out sexy lingerie at Victoria Secret, she helped me hide all of the caregiving aspects of my life from my now husband until we were ready to move into that aspect of our relationship, and if I had any embarrassing “bodily function” issues she would quickly run upstairs to my apartment from hers to help me out at a moment’s notice. Also, let’s not forget the round-the-clock tireless training of revolving caregivers over the years!
He is also truly one of my heroes! He is a behind-the-scenes kind of person and will work day and night to make sure I’m safe, secure, and have everything I need in life.
When I was first injured he flew all over the world trying to see what the most innovative stem cell therapies, regenerative medicine therapies, pain therapies, and rehabilitation therapies there were out there. He did not stop – EVER! He was a machine and just kept going, and all for me! The devotion my parents have and continue to have truly has no bounds.
Originally I didn’t want to have a larger wedding, but my parents sat me down and told me that there were so many people in my life that have supported me and would love to see how far I’ve come. It was the best decision I have ever made as we had friends and family from around the globe come to celebrate such a joyous occasion with us. You can read the wedding blog on www.QuirkyQuad.com.
I planned the wedding down to the smallest detail, but my mom and dad were with me every step of the way. One of my best friends, Kira, and my mom threw me an incredible surprise bachelorette party where my sister-in-law’s, my sister, and close Raleigh friends surprised me for a night of debauchery. Well, “adult” debauchery fun … My definition of that nowadays is staying up past 10 PM.
Throughout every step of my journey in life, especially the last 9 years, I have had upfront and silent cheerleaders propping me up and pushing me forward through good times, and hardships. I’m not quite sure I’ll ever be able to repay the endless kindness I have been shown, but every day I let someone in my life know how much I love them, that I am there for them too, and that I will pay it forward in any way I am able to.
I started the Quirky Quad blog and writing for magazines as therapy for myself because writing is a cathartic hobby of mine. It has blossomed into something so much more and I have been able to work with so many fellow quadriplegics who have had their own personal hurricanes. If I can pay it forward just a fraction of what has been given to me that it is all worth it!
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- The Fight for Survival – Health Insurance Battle Tactics for Medically Necessary Services – Part 2 - June 22, 2020
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- Aquatic Therapy – The Story of a Paralyzed Mermaid - February 13, 2020
- Intimacy and Romance After Marriage – “Newlywed Life” - January 31, 2020
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- Adaptive Technology Life Hacks - August 20, 2019
- BEHIND THE SCENES: From the ICU to Walking Down the Aisle - June 20, 2019
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- Wedding Bells & Wheelchairs - February 15, 2019