What it means to me to find joy in hardship

Posted by Reeve Staff in Life After Paralysis on December 26, 2019 # Caregiving, Relationships, Lifestyle

By guest author Brooke, WAGS of SCI co-founder

When my partner first was injured and sustained his C4 Spinal Cord Injury five and a half years ago, I had no idea what this journey would look like for either of us. For the first two months I remember thinking that he would just get up one day and walk out of the hospital fully recovered. I had no clue about the intensity of this injury, the length of potential recovery, the emotional twists and turns that come at every stage, and the pain we would both feel trying to figure out our new lives together.

Yes, we experienced a lot of sorrow, disappointment and pain together, but from this pain and hardship came something I never expected: a slow and steady progression to joy. Contentment with the situation we are in, a newfound zest for life, and a love we never thought we would achieve between us almost five and half years later. But how do you find this again after such a devastating injury where the complications never seem to end?

When a doctor you barely know takes you into a small windowless room and begins to tell you your partner will never fully recover and would have to be dependent on someone else caring for him for the rest of his days, the shock that brings to your mind is literally devastating. It doesn’t leave a lot of room for hope that is for sure, and around this time is when you have to make a conscious decision: Do I want to subscribe to the life that the doctors and the medical system have in store for us? A life of sterility, where your options are limited and bleak? Where physical “movement” is the only thing that matters, and you’re classified in a box based on nothing more than opinions? Where you’re a number and not a person? Or, do you want to live a life YOU want, where love is everything and experiences are never dictated to you; where your options are endless and there is ALWAYS a way to make something happen if you want it to; a life that does not including hiding in the shadows. I decided to take that choice - I chose to change my perspective and instead of focusing on what was shown to us, I consciously chose a new potential of my own making. I wanted to think outside the box with everything and never be told what we could and could not do together.

I began to see things differently almost immediately.

When someone told us that we wouldn't be able to travel without a care aid with us, I didn’t listen and started planning a trip for the two of us to practice overnight travel. Was it easy? No, not at first. Did it work out and did we learn a lot from it? You better believe it. We started taking trips together that no one else thought we could do alone, and you know what? We got so good at them that we started to travel everywhere we could, and it became even more of an adventure.

When almost everyone told us that I wouldn't be able to look after my husband alone because his needs were too great, and that I would slowly burn out, I took the opportunity to organize my life how I wanted it to be, so that it would work for us both. I took the extra time to build my life so that I would be able to balance his care and my own self-care efficiently. I invested time and energy into myself. Was it easy? Heck no. I learned so much about myself along the way and was able to practice balance until it became a habit.

I had started to call this new-found life perspective “the world is our oyster” and would remind myself each day that although some things are unavoidable in this SCI life, although some difficulties are too much and you struggle mentally a lot of the time, these struggles can be turned into worthy challenges that can be conquered over time with practice. You can see these challenges as fleeting, as just another hump to jump over. You can look back on them and smile that you did it. These challenges are not you. They're not WHO you are.

After a while of practicing this and applying this way of thinking to most things in our life, over time, things started to get easier. I started to see things differently and get recognition from those people in the community who had doubted us (and me). I started to struggle less and enjoy more; I started to see expectations as a construct of my own reality instead of living by someone else’s rules. Slowly I began seeing new opportunities present themselves to me out of nowhere; I started to wake up feeling excited for the next day instead of dreading it. My husband’s care became fun; our world grew, and we started to meet more and more people who appreciated our outlook.

When I try and explain to women who are new to this caregiving life that having a perspective shift can change a negative outlook on any situation, they usually push back with “oh that’s just not possible with what we have to go through each day”, blaming the injury’s complications and external circumstances for why they cannot start to move into a more optimistic, hopeful perspective. I get a lot of “you’re living in a fantasy” or “things are not roses and sunshine all the time”. No, they're not all the time. Life is hard - there is no sugar coating this.

Who ever said that life was going to be easy? Who ever said that “easy” is the ultimate life anyways? After all, who DOES have an “easy” life? Look around you. Really look. You will see that most people do not, and that “easy” is relative. One person’s horror can be another’s saving grace. Everyone’s problems are the worst problems. We are conditioned in western society that the ultimate life should be one of “ease” without any hardships, but I am here to say that without any hardships or trials, there is nothing to be learned. There is no growing to do. And without growth, are you really living?

If you start to really see things this way, you are faced with that lurking choice once again - how do I WANT to live? I have a choice... this life chose me for a reason. I only have one life. Do I want to spend it sad and depressed? Or do I want to take every obstacle as a learning experience and a lesson? Yup. That’s a yes from me.

This is when I am reminded of the quote from the late (and great) Dana Reeve:

Dana Reeve quote

I am reminded from this quote that when you have gone through the worst of times, you can see things so clearly IF you choose to. There IS joy inside hardship after all, and life can be a blessing no matter how dire your circumstances may seem to others or to you at the beginning of your journey to be your very best self.

Sometimes at the end of days that are very trying, or when I am exhausted and things seem to be too much, I sit and think hard about my choice long ago. The choice I made to make my own rules, see things how I wanted to see them, and experience this life that was given to me to the fullest no matter what obstacles were placed before me on that journey.

I take a deep breath and tell myself that every second of my life counts, even the tired, sad, hopeless parts. Because just around the corner there IS a rainbow, and it’s up to you if you choose to see it.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.