Navigating the SCI life

Posted by Reeve Staff in Life After Paralysis on January 07, 2020 # Caregiving, Relationships, Lifestyle

By guest author Brooke Pagé, WAGS of SCI co-founder

This is the story of how the great Stoic philosophers Fredrich Nietzsche and Marcus Aurelius taught me about navigating the SCI life.

When my husband was first paralyzed and almost died, I decided to take a new path and outlook on life, and it came to me as an epiphany one day at the hospital when he was still in the intensive care unit. I decided to live consciously from that point onward; to live with purpose every second, even when those seconds were the worst seconds I had ever experienced in my life. I made a choice to get through the bad times with vigor, and trust that everything that was happening to me, to him, to us, was for a greater purpose. I chose to really believe this, and live it, no matter what. Something happened to me that day in the hospital where I did not even recognize my old self anymore. I no longer had the capacity to see the world the same, and I knew that no matter what, I wanted to experience the ups and downs in their entirety -- in order to gain wisdom, perspective and “truth”. I wanted to be different than anyone else, I wanted to do things no one else was doing.

For years I kept quiet about how I was feeling about this life post SCI that was given to me to experience. When others were patting me on the back saying that they didn’t know how I could handle this and wouldn't know what to do if they were in my shoes, I would sympathize with them, but in the back of my mind. I thought to myself, “I love this life…I wouldn't change anything even if I was given the choice to”. My own husband would question me and get angry while dealing with his own grief and loss, while making me feel bad for “loving” how he is and what our life was. He would ask me how on earth I would ever LOVE this and love him like this. He asked me how, even on days of tears and struggle, I could go back to loving every moment of it for my own greater good. I would shy away from sharing my thoughts and feelings because in the back of my mind, I felt strange for thinking this way…

I felt guilty for thinking these thoughts in general. I was sure that this could be a coping mechanism that I had trained myself to feel in order to get through the tough times in one piece or just survive to be strong for my husband. I thought I should feel like I was just in denial and one day I would have a breakdown from potentially hiding my true feelings. I didn’t really feel like I was hiding anything though -- I loved my life. I would find so much joy in caregiving, in how our life looked now, in the person my husband had become since his injury. I reveled in it. I didn’t want anything different. I did not want to go back to how our life was before this injury -- living to work, never taking any breaks, being distant from one another, struggling to find purpose. We had reached such an amazing place together because the vulnerability we had between us had helped to strengthen our relationship to new levels I never thought we would get to. I loved WHO he had become since he was paralyzed, how much he appreciated me and what I did to help him, how we had become new people who were best friends. It was something I was so thankful for.

Brooke and her husband showing their "Amor Fati" tattoosOne day I was opening up to my brother who was a Philosophy major in University about how I felt and he told me (to my surprise) that how I was feeling wasn't just a fake facade or a coping strategy, that it was an actual school of thought pioneered by the Stoic philosophers. He told me that there was a term associated with this thought process, and it was called “Amor Fati” in Latin, or, “Lover of Fate”. I was intrigued. I had no idea what he was talking about, nor had I ever studied these Stoic philosophers in school or after, but I knew that I had to spend some time digging into this to see what it was all about. I went online and started googling these terms and found exactly what I was looking for my whole life: Amor Fati, lover of fate, was what I had learned to feel without knowing about it at all. I had no reason to feel guilty and was comforted by the fact that this way of thinking was something that was considered a “formula for human greatness” I did not know existed. I felt like I had a huge weight lifted off my shoulders, and became obsessed with reading about Friedrich Nietzsche and Marcus Aurelius, the two philosophers responsible for coining this life changing term.

According to Aurelius, who wrote about this two thousand years ago in his journals, Amor Fati, or Lover of Fate, is described in a metaphor about a growing fire: “A blazing fire makes flame and brightness out of everything that is thrown into it.” It means that no matter what circumstances happen to you, good or bad, everything that happens makes your spirit bigger and brighter. That everything that happens is not something to be resisted, fought, or struggled with, but something to be not only embraced, but loved. Another Stoic, Epictetus, who as a disabled slave that had faced adversity after adversity, echoed the same: “Do not seek for things to happen the way you want them to; rather, wish that what happens happen the way it happens: then you will be happy.”

The great philosopher Friedrich Nietzsche, who wrote about the term as the “formula for human greatness” would describe Amor Fati as someone who “wants nothing to be different, not forward, not backwards, not in all eternity. Not merely bare what is necessary, still less conceal it… but love it.” When we accept what happens to us in life and understand that these things -- most often bad things -- are outside our control, we are left with this: loving whatever happens to us and facing it with unfailing cheerfulness and strength.

I was in love with this school of thought. I felt peace, relief and so much ambition when I read the writings behind Amor Fati. I felt like this was something that I would live by forever, regardless of the ups and downs this life has to offer. I would embrace every moment in its entirety -- no matter how challenging it may be -- and welcome it. The Stoics teach us to love every challenge and heartache as it comes, for you will be better for it in the end. They teach us to find a way to LOVE each hiccup, each stressful scenario, and train yourself to see the acceptance in it all. Like Aurelius’ metaphor of a fire, every experience can be fuel to your own fire, and help you to grow to your greatest potential possible if you so choose. Every scenario that happens is not “I’m ok with this” or “I think I can handle this” -- according to the Stoics, you should think: “I feel great about what is happening. Because if it did happen, it was meant to happen to me. I am almost excited that this happened. I am going to take this situation and make the absolute most out of it.”

That may be super challenging to understand for some who are going through the worst periods of their life right now. Those who are struggling to see the light in anything… but I assure you, it is possible.

So, what does this teach us about life after a spinal cord injury? When literally every single aspect of your life is turned upside down by a devastating disability, how can you take the teachings of the Stoics and run with them regardless of how restricted you may feel?

If you are suddenly dependent or cannot walk or move, some would say that this is their worst nightmare, but the Stoics would say that this was meant to be in order to show you your greatest potential. If you embrace this and accept the fact that you are facing this adversity, you will show yourself how powerful your personal story can be made to be. After a while, your issues will not be as prevalent, or, you may not even notice them anymore as you had been. What once limited you could now be your freedom... a freedom that came from where you least expected it.

If you are stressed out as a caregiver and are starting to resent your situation and your partner because you have not found a balance, what if you started to love your situation? What if you strived to embrace your place as exactly where you are meant to be, and that your greatest self is waiting for you to see? What if you trained your brain to think this way... how different would your life become? How differently would you see it? And what would happen from that way of thinking?

If you decide to flip your life on its head as you know it, you will notice that it is hard. But what time is better than the present moment to do this?

Some may say “Who wants more hardship than I already have to deal with?”, especially if SCI is involved. The answer is as simple as this: do you WANT your life to be extraordinary no matter what your circumstances are? If the answer is YES, then you have chosen a path not of least resistance, but of learning and growth. Who ever said reaching your greatest potential was easy?

The Stoics believed that true purpose comes from overcoming challenges and loving them. This is a challenge in itself for many, but I can honestly say from my perspective, and by having read the perspectives from some of the greatest minds in philosophy and academia, I am pretty happy with my choice to see the world this way.

So now I ask you, are you up for this challenge?