Pain. Chronic pain. It’s no joke. It’s debilitating. It can lead to death. It can be physically and psychologically crushing to your soul. Living with physical paralysis, for me, pales in comparison to pain. If asked that “What If” question whether I would prefer to live in chronic pain or be paralyzed, at this moment as I write this article – I choose paralysis. This is a pretty powerful statement if you think about it. I am essentially choosing to practically go broke, have people’s hands in my body all day long, have someone dress me, use catheters and suppositories, etc. Think about what I am saying.
This is how debilitating my chronic pain is. For anyone who lives in chronic pain, your life has been undoubtedly changed forever. I know mine has.
When I was living in the ICU after breaking my neck in 2010, I was one of the unlucky ones who also simultaneously suffered a very deep pressure sore on my behind, pulmonary embolisms, and died a few times. I thought “this was the worst of it” to myself. Wow, was I in for a rude awakening 3 weeks after my accident!
I was lying in my ICU bed thinking about how my life was going to change forever and in the blink of an eye I started to feel like my body was on fire. It was a feeling of burning pins and needles coursing through every vein and cell of my body. Naturally, I started crying and screaming. The surgeons had believed a screw had come loose in the hardware they had just installed in my neck to save my life. I went in for multiple MRI’s, but everything looked pretty stable.
They doped me up on an intense amount of morphine for days on end only to wean me off slowly to have, what I remember as, a crushing conversation. A doctor told me that he believed this was something called Neuropathic pain – pain caused through the damage of your nervous system not working correctly. There are all types of nervous system pain including central and peripheral nerve pain. I’ll let you Google the difference for the sake of keeping this article on point. Most doctors think many of us are making it up, no I’m not lying, and that the pain is all in our head because they cannot see it visually with our current technology.
In any event, the doctors told me in no uncertain terms I was likely going to live with this burning pins and needles pain on 80% of my body for the rest of my life. I didn’t know what was happening. My brain couldn’t comprehend. I was at a loss. I was scared. They made quick work of putting me on a drug called gabapentin, which I’m told does dumb down the pain for some, but not for me.
I just sat there and cried with my sister. I remember it so vividly. I thought how harsh could this universe be to paralyze me and leave me with chronic pain for the rest of my life? What a cruel joke! If I was going to be paralyzed, could I at least not feel my body? This would’ve been a cosmic kindness in my opinion.
For months on end the pain was unrelenting. However, I persevered. What was the alternative? I had to heal the pressure sore, get out of rehab, engage in physical therapy, try to get on with my life, you get the idea. Over time my brain did finally start to adapt, but not immediately. I would push through each day to beg for the night time to come so I could fall asleep, and try to forget about the nightmare I was living in. I wake up each morning with a 7/10 pain level and go to bed with a 9/10. I’ve tried all kinds of medications, meditation, acupuncture, dry kneeling, marijuana, etc. For me, none of these modalities have seemed to work.
It has been and continues to be a long and winding road with respect to where I am today, but guided visualizations and distraction are my best medicines. This is certainly not to say that my pain is that much better, but sometimes it does lower the volume while my body is screaming inside. In fact, as I write this article, I am having a tremendously tough day, but even writing words on paper is extremely cathartic to me.
It is no secret that chronic pain leads many to addiction, death, misery, and more. However, over the years I began to employ my own type of mental therapy so I did not feel like I wanted to jump off a cliff each day. If you don’t suffer from chronic pain, you can only sympathize, but it’s challenging to empathize. It’s invisible, but it can occupy your every thought and mental state each moment of each day.
So, What did I do?
The Birth of My Alter Ego
Well, I still live in tremendous pain each day, but I finally came to realize that I have two identities. There is me and there is her. She is my alter ego so to speak. She lives within me. She is always there lurking in the shadows and sometimes up front and center. She is my chronic pain.
For many years it was almost as if we were in a toxic relationship with one another — married with no option for divorce just as many young women, in the past and still today, were betrothed to men they didn’t even know before they were born.
However, over time and through meditation as well as constant mental work we began to get better acquainted. I would not say we developed a loving relationship, but a mutual understanding so that we might be able to co-habitate together for years to come.
We still have our arguments and sometimes all-out fights, but through compromise we have found a semblance of a middle ground. During daylight hours she usually allows me most of the day to get what I need accomplished, but come late afternoon … It’s her time. If I do not listen to her, she will take over my body like a tsunami wiping out an island. So, I have been humbly forced to adapt my life to her needs as well as my own.
I get in bed mid-afternoon, take care of my caregiving duties, and then continue to work albeit from my bed. She simply will not allow me, on most weekdays, to be vertical in my chair past 4 PM.
I do have a sneaky trick though. When I do want to engage in social activities and she is fighting me for control I tame her with a glass of wine, laughs, and good friends. This usually accommodates her until we get home at a later hour. However, I must compromise in the morning and let her sleep in at least once a week and not get up at 5 AM as I do most days.
She needs to rest too. She is part of me and until I learned to accept her, we were in an epic multi-year war together. There were tears, pain, bouts of suicidal depression, and irreconcilable differences. I almost divorced her through death. Think about that.
Death seemed like the most incredible kindness the world could bestow upon me so that I might be able to escape her hold on me, and rest in peace. I looked at her as mentally abusive, but I, too, was abusive in that I never let her out to experience the world. She is certainly not going anywhere and requires care just as I do. She requires heating pads, being bundled up horizontally in bed, and sometimes just likes to lay still like a vegetable without any noise or people around.
After years of personal therapy between the two of us, we found a way to have joint custody of my body. I do not always get my way and sometimes I need to acquiesce to her needs rather than my own desires. I cannot be too selfish as my body is not my own. It sounds strange saying that out loud, but it’s true. The more I fight her the less she gives. As with any relationship, compromise is key. I am in an arranged marriage and divorce is not an option at this point for me. I have too many ambitions now!
This is my life. This is chronic pain. This is how I adapt, overcome and thrive the best way I know how.
This is my truth, my burden, and my lifelong custody agreement I will forever be locked into.