One might assume that being paralyzed is the most challenging aspect of the game.
I tend to disagree with this outlook as there are so many secondary complications that follow Spinal Cord Injury, which can severely affect the quality of life physically and mentally. The mental challenges with Spinal Cord Injury are the most daunting to me.
A very large challenge in my life is actually FEAR: fear of getting another pressure sore if I do not take excellent care of my skin, fear of gaining weight, fear of caregivers leaving, fear of my catheter blocking at the most inopportune moment, and so much more. I work day and night on relaxation techniques to help me live a happy and fulfilled life. I would say I manage pretty well, but there is not a moment that goes by in a day that I am not constantly thinking three steps ahead with respect to planning for the worst but hoping for the best.
It can be utterly daunting when I wake up in the morning. All kinds of things run through my head such as: did I get all the wrinkles out from the sheet last night so I do not get a pressure sore, is my morning bathroom routine going to run smoothly or cause me consistent pain, will caregivers (whether that be family, friends or a paid employees) be there for me throughout the day, will I be able to have a productive workday or a fun weekend without any complications, etc. The list is endless.
This might not be the healthiest psychological approach, but fear drives me to stay hyper vigilant every moment of every day. I’ve come to accept this in my life, and, surprisingly, it does not create as much stress in my life than one might think. Until things go wrong, I’ve created a well-oiled machine called “my life.” I will admit that sometimes it feels like a psychological prison that I put myself within, but every time I let myself go or slip into forgetting to do this or being lazy doing that – things start to go terribly wrong.
I have to make sure every person who helps me or cares for me hasn’t missed a step in my care otherwise I am the one will pay the price. Everyone should be responsible for their own health care & bodies, but with so many things to remember in a day in addition to making sure everyone else remembers things it can be utterly overwhelming. I have lists upon lists to make sure I stay healthy.
So, I’ve accepted this part of my life as I can control how I live my day for the most part. However, what I cannot control, nor do I wish to, is people.
As a quadriplegic who is dependent on others for care, support, and so much more life gets much more complicated & messy.
If you are having a bad day or are grouchy, you can tell everybody to “bugger off” and spend the rest of the day by yourself. With a Spinal Cord Injury, especially being a quadriplegic, this is not such an easy task. If I do not manage people’s emotions in my household and those surrounding me I’m toast. I mean literally, I could die, people could leave, and I could be left high and dry, which is my greatest Fear.
Over the years I have developed a thick skin and what I think is a moderately level head as I constantly have to manage people’s ups and downs who are around me. If I lose it or blowup, there is potential for those around me to walk out or stop helping me (with the very big exception of my mother- there is something about a mother’s love.)
I don’t feel that I have the luxury to express my emotions the same way as many others do because there is a constant reminder that the people helping you are doing it out of the goodness of their heart. Therefore, we, as quadriplegics, should be grateful!
I am beyond grateful every day for the people who help me in my life, and I tell them this on a regular basis.
However, people don’t want to be around someone who has anxiety, is depressed, nervous, grumpy, grouchy, etc. This can be challenging for any party involved. As if Spinal Cord Injury is not enough to deal with along with all the secondary complications that follow it, mediating people’s emotions for years on end is perhaps the most tiring of all activities for me. Although, essential for survival!
There are days I feel like giving up because I also want to scream and shout like a little kid, and just tell everyone to go away. I simply don’t have that luxury in my particular life. Life is messy, complicated, and can throw you for a loop regardless if you are paralyzed or not. When your life depends on someone else, things get infinitely more complicated.
While this may not be the most upbeat blog I have written, I find it extremely important to explore all aspects of life with Spinal Cord Injury. The funny, the sad, the sexual, the depressing, and above all the raw, honest truth.
I do not write this to scare fellow “newbie” quads so to speak, but rather I think back to when I was newly injured, and I would have greatly appreciated some help navigating the emotional waters of life after Spinal Cord Injury. Life can seem overwhelming and daunting at times especially when things are going wrong.
Personally, I find comfort in knowing that there is someone out there who cares, will listen, can offer advice, and can understand life from my perspective. I find the social media groups for Spinal Cord Injury folks on Facebook so comforting, and I have made so many incredible friendships over the last two years from these groups.