When we are growing up we are faced with all kinds of choices a consequences and as children that we are blissfully unaware of. Do we want a cookie or a doughnut? If we finish our vegetables then we get dessert; if we go to bed early than mommy will read us a bedtime story, etc. At a young age we don’t really associate making a choice with sacrificing one thing for another either. It’s only as we develop into young adults that many of us come to the realization that everything in life is a choice, sacrifice, or compromise.
Choices and compromises become exceedingly more complicated as we grow into adults. If we want a family, then we have to save to have a baby; we can’t go on that family vacation because we are trying to save money to buy a house; if we keep eating donuts every day then we run the risk of becoming obese; the list goes on.
I was thinking about sacrifices and choices the other day as it relates to spinal cord injury, and more specifically, the compromises I have had to make and continue to make as a C6 quadriplegic. As I was pondering some of these choices lately I was surprised at how many things I have had and will have to give up in my life. I was having a challenging day, so of course this was a glass half empty point of view, but after waking up the next morning feeling more like myself I made a list of the things that I have gained, and given up over the last 8 years since my accident in 2010.
Living with spinal cord injury presents such a unique set of challenges that many folks, unless you are the one injured or know someone who is, may not think of on a daily basis. I often play this game with myself because while I know that I am faced with seemingly insurmountable challenges at times, there is always someone who is dealing with A LOT more than I am. This is not to say that we should go around comparing ourselves to other people, but I do find pausing on certain days to take stock of what you have in your life is a quality many of us lack. This age-old saying may seem outdated and redundant, but I personally find that it rings true when the proverbial “ship hits the fan” in people’s lives … “You don’t know what you have, until you’ve lost it.”
Here are a few of my choices over the years:
I know many fellow quadriplegics who have had children either through a natural pregnancy, surrogacy, or adoption. Now, I’m not saying I want children, but that boat is definitely sailing away for me as I write this. Since I was 11 years old I instinctively knew that I did not have a maternal bone in my body and was likely not to have children. I always wanted to fall in love, focus on my career, and travel the world. So, when I broke my neck at 27 years old one of the first thoughts for many young women is will they be able to have children?
I even had a psychologist come into my room and tell me that it was not too late for me, but I shooed him away as that was the farthest thing from my mind at the time because I was handling a myriad of other medical nightmares. As the years have passed and I watched my brothers, sisters, and friends have children I can’t lie and say I have never thought about it. I think I would be a pretty great mother, but before I met my boyfriend I was already in my young 30’s and time was getting the best of me.
I am now 35 years old, in a very loving relationship, and could likely have a child, but I would definitely be considered a geriatric mother. The main challenge for me is that I’ve had several pulmonary embolisms, so if I physically got pregnant I would likely die within several months due to blood clots from increased estrogen levels. Therefore, if I did want to have a child I would have to go through adoption or some type of surrogacy, which is extremely expensive. Many folks, myself included, cannot afford to pay a surrogate. This is the least of the challenges for me … As a C6 quadriplegic who is fully dependent on another human being for caregiving I would then have to find a nanny in addition to a caregiver unless I had family that would be able to help me raise my child. I’m sure my family would if I asked them to, but I could personally never ask them to do that because they have their own lives with their own children. I also can’t imagine how much this would cost on an annual basis!
Another factor why I have decided to sacrifice the idea of having children is because of my immense chronic nerve pain levels every single day. You see, for me personally, I wake up with a 7 out of 10 pain level, which feels like I have pins and needles/fire burning throughout my entire body. By the end of the day the levels creep up to about and 8 or 9, which generally means I need quiet, meditation, and to just lay absolutely still in bed. Not all quadriplegics deal with intense chronic pain like I do, but many do. The idea of a crying child in the household sends shivers up my spine because when someone even drops a loud pot or pan at the end of the day it spikes my pain levels quite dramatically. I don’t think I could personally do that to a child because the amount of sacrifices they would have to make for “mommy” on her bad days – it just doesn’t seem quite fair to me. I would want my child to be able to run around, laugh, jump up and down, and in my particular situation I just cannot see how this would be possible.
So, I’m strangely blessed that I was never born with much of a maternal instinct because I think I might have been more devastated at this point my life if I really wanted to become a mother. As I get older, the challenges with spinal cord injury are likely to be greater from a medical perspective …. Unfortunately, just a fact many of us SCI folks have to deal with.
“Having a family is what you make of it,whether immediate or not”
2.) Functional Recovery of My Hands
When most folks are injured they deal with a series of medical challenges for a period of months, but many are fortunate and are able to start living their life, physically anyway (the mental challenges are a completely set of tricks, which I won’t dive into right now)!
I, on the other hand, was one of the statistical outliers with respect to things that went wrong with the aftermath of spinal cord injury. I am not going to recount everything I went through, but I will say that for 6 ½ straight years after my accident I dealt with pulmonary embolism’s, multiple spinal cord surgeries, severe osteoporosis, many broken bones, pressure sores down to my bone leaving me in bed for over a year at a time, etc. So, I was not one of the fortunate few who was able to go about getting on with their lives right away. I did the absolute best I could and made the most of every day despite my circumstances, but there were a lot different therapies & surgeries I could have tried, which would have probably changed my life. I think some of them still could, but I’ve had to make an extremely difficult choice in this department.
Let me explain –
There are several surgeries out there called tendon and nerve transfers. For a quadriplegic who is paralyzed from the chest down these type of surgeries can be extremely helpful for regaining physical motor function of some of your fingers, and the triceps. There are a handful of phenomenal surgeons around the country who are able to perform these surgeries, all of whom I’ve spoken with at great length, but there are a few caveats that should not be ignored when making this decision. I would be more than happy to pass along my research to other fellow quadriplegics who read this blog.
If I had use of just three of my fingers on each hand, which most surgeons agree would be highly probable because I am a good candidate for the surgery, and had the use of my triceps it would allow me to most likely live independently without caregivers. Seriously!
So, why would I not jump on this train at this exact moment you ask?
Well, it’s a little bit more complicated than that. You have to physically move to the location where your surgery is for at least three weeks after surgery, and it is highly recommended to perform surgery on arm at a time. Let’s leave aside the costs of physically traveling to your surgical location, paying for a hotel, caregiving, etc., for the moment, and let’s assume your insurance does physically pay for the surgery. After surgery your arm is physically splinted for the next three months. It is a type of splint that adjusts by angles and you slowly extend your arm outward several degrees each week over the course of 12 weeks.
So, you definitely need a caregiver or a family member to help you when you are home because you are basically a one-handed quadriplegic, which I cannot imagine is easy. You also have to engage in intensive physical therapy several times a week at a location, but definitely every day at home for at least a year because you basically have to retrain your muscles & nerves as they have basically been re-purposed for another use. Depending on your insurance you only have so many therapy sessions per year that insurance will even pay for … Don’t get me started on this one! In the physical surgery they actually take tendons, muscles, and nerves that are working from other parts of your arm, stretch them around, and re-purpose them to do something else. Of course this is a simplistic explanation of what they physically do, but you get the idea.
After about a year you can go back for surgery on the next arm and repeat the process again. After about a 1-1 ½ years each arm is likely to need a “touch up” as I was told by most surgeons. Again, this is not for everyone, but for the majority. Now, you can definitely choose to go “Kamikaze style” as one of my surgeons told me and do both arms at the same time, but you would need 24/7 care, which not a lot of folks have the means nor will to do.
I had heard of this surgery years earlier, but I was living in China at the time dealing with pressure sores and spinal surgery. I put it on the back burner, but approached it again when I moved to Raleigh, North Carolina several years ago. When I really started to take the idea seriously because the concept of being independent is about the most incredible idea in the world to someone in my position, I was already pushing 34 years old.
So, I did the math in my life … After 6 ½ years of medical nightmares I was finally stable, in a loving relationship, able to really focus on my career, and not dealing with anything major at that particular moment or right now. I had found and am still finding a type of mental and physical stability in my life, which I have craved for so many years. I want to save up the money, go traveling with the one I love, experience new things, new people, and try to stay out of hospitals unless absolutely necessary.
After accounting for all these factors in my life I thought to myself:
“Okay Ali… By the time you get all of the logistics of the surgery figured out you will likely be 35 or 36 years old before you go under the knife. Let’s take worst-case scenario and say that you need 3-4 years for both surgeries, recovery, physical therapy, etc., well, that puts you near 40 years old.”
I’ve worked so hard to get to where I am right now that the idea of being stuck in hospitals and physical therapy for the second half of my 30’s just seems untenable. I want to use what’s left of my 30’s to enjoy my life, travel, live in peace, and focus on helping others. I am acutely aware that after 40, it’s not that things necessary go downhill quickly with spinal cord injury, but the chances of medical challenges arising are much greater for every year that you are in a wheelchair.
With that said I had a life-changing choice to make last year – To become or not become independent again? I have officially opted out of the surgery because I just can’t bear the thought of spending years on end in physical therapy again. I did it the first several years I was injured, put my time in as they say, and now I want my freedom. However, if I was in my young 20’s when I was injured I would be in a completely different position, and I would absolutely positively go for the surgery! I never really thought about having to make decisions based on my age before, but the last several years I have had to do just that!
Adapt or die as they say! I must admit this one was quite a hard one for me to swallow for quite some time. However, I made the decision myself … Yes, it was a sacrifice, but a personal choice so I could be there for my family, loved ones, and friends who spent the first several years after my accident being there for me.
“Family and Friends are everything!”
3.) Princess and the Pee – aka “My Skin”
When you sustain a spinal cord injury you are generally left to deal with several ongoing medical issues that can drive you bananas. Some of the main contenders are pulmonary embolisms, pressure sores, pneumonia, urinary tract infections, osteoporosis, chronic infections, etc. Fortunately, a very select few have to deal with all of them at the same time, but for me personally, the main offenders in my life are Pressure Sores and Osteoporosis. Sometimes I joke and think that I would rather have constant urinary tract infections, but I know so many folks on antibiotics every month who are literally living in hell because they are taking antibiotics year round.
I have broken my fair share of bones due to my severe Osteoporosis, but what really prevents me from getting out and engaging in a bunch of outdoor rugged activities as I see some of my fellow quadriplegics partake in is my skin. We all joke that I am literally like “Princess and the Pee.” If you pretty much just look at my skin I will get a pressure sore. A simple red mark on my bum can take over two weeks to go away. When I had a pressure sore on my tailbone, a stage IV pressure sore, I was in bed for over a year after multiple surgeries. Prior to my major pressure sore I had a couple pretty large ones that left me in and out of bed for three years when I was first injured.
So, in terms of sacrifice & compromise? I have so many friends that ask me to come visit them, hang out on the beach, go camping, take a flight somewhere, etc., and without meticulous planning I just can’t go. I do often get disheartened by my skin, but my skin is great now even though it is supersensitive, and I just trying think back to what it was like looking at my four walls every day for over a year – this normally stops me dead in my tracks from complaining 🙂
If I get in bed I can’t just lay flat on my mattress … I have to have someone literally iron under my butt with their hands to make sure there is not one wrinkle in the sheet. Some initially think I’m overreacting, but when there is a wrinkle in the sheet, and a giant red welt on my back the next morning they usually think twice! It is blood annoying, but I am aware that this is one of my immense challenges I have to deal, and I just need to plan accordingly. I really wanted to go on this very cool off road rugged trip to Costa Rica last year, but I had to sadly decline as I was aware that bouncing around in a bus for four hours would probably result in some sort of Costa Rican Hospital visit – No thank you 🙂 I worked hard on my beautiful new ass, I have no intention of messing her up now!
Everything in life is a choice, compromise, or sacrifice depending on how you look at it. I come across so many people every day who look at life with a glass half empty perspective, and that is definitely their choice, but I have opted to find some resemblance of peace in my life. The only way I know how to do this is by sometimes making hard choices given my particular set of circumstances, and, most importantlym accepting the choices that I make!
Remember, you don’t have to live life, you get to!