As I ponder the world acceptance I am reminded of one of my very first patients as a student PTA. I had the great privilege of meeting an outstanding human being during the first few weeks of my first rotation. She taught me an enormous amount about real acceptance. Allowing horrible things to be what they are. Horrible. This beautiful new friend of mine had one of those horrific things happen that you think only happens in the movies. One morning she was right as rain, going about life, doing her thing. The next minute she coughed and was paralyzed from the chest down. Her situation grabbed my heart immediately, she’s funny, confident, hard-working, realistic, and just trying to figure out what comes next.
We were given a few short hours together on Mondays and as I think about her, I think about all of us in the world of chronic pain and how we continue to keep on keeping on. Her story is different from ours in many ways, but as we started talking about things I realized we had a lot in common. Here were some of the observations I made about acceptance while spending time with her.
1. Why the heck does everyone around someone in pain want them to be ok all the time?!
I wonder if these well-meaning people, including those IN the medical profession, have ANY idea how hard it is to be “on” all the time? No wonder those in chronic pain end up isolating?! It’s exhausting to appear hopeful all the time and to try to navigate the emotions of others. Look WE all know that we AREN’T hopeful every single minute of every single day, NOR do we always feel positive about our futures… seriously, how are we supposed to feel positive ALL the time with this burning that won’t disappear, or the fear my legs will give out under my weight as soon as I stand too long – or in her case that she can’t even FEEL her legs.
Our friends and loved ones often confuse the moments of our reality as unhealthy, most regard them with fear and think we are completely without hope. So, I ask the able-bodied reading this, if you knew your husband would have to carry you up and down your stairs and you have no idea when you will no longer need to be carried… how would you feel about that?
Might you have mixed emotions? Thankful they are able and willing. Angry that you can’t do it yourself. Feeling like a burden to those you love. A shell of your former self. Fierce determination to figure out what you can do and who you will be. Wild despair that you may never be anything other than you are now. A deep guttural growl to master that staircase ANY way you can so you can lighten the burden your husband now carries, even if it costs you more pain? Just a few possible things one in pain might feel, all within the span of a moment.
It’s impossible to be ok all the time, I’m just saying there are tapes of full-on cray cray in my head that you can’t hear as I made choices and tried to figure out what to say to someone asking, ” How are you?” Just because I was sad and mourning a loss one moment doesn’t mean I won’t be optimistic in the next breath. I think this is all Please think long and hard before you want to put me on a suicide hold at the hospital. Or label me as catastrophizing. It’s very possible with some understanding and validation I might just find my glimmer of hope again and hang on to the next moment.
2. HOW do you figure out what to hope FOR?
My new friend and many of those with SI Joint pain or other pains have NO idea how long it will last. They don’t know if it will get worse, if it will get better, or if it is fixable, or it just has to be lived with. I don’t have an answer to this, but I think you know that.
For me, my hopes increased as my mobility increased. BUT at each of those junctions I had and have to decide will I hope for more or should I just be happy with where I am at. This question is not a question of physical ability or disability, this is how you see yourself, and how you interact with your world.
It’s ok to hope, even when it seems crazy to do so! There was a long time I didn’t think I would ever be anything close to an athlete again. I have continually surprised myself by pushing my physical, mental and emotional boundaries further than I ever thought possible! I can now walk a 5k. Swim in a masters meet. Join up with friends and do another Triathlon…. there is more than one way to satisfy my desire for competition other than running a marathon, you know what I mean?
We have to be flexible with ourselves and our limitations. The key to this… being HONEST with YOURSELF about where you are physically and emotionally. What do you want? What are your goals? How can you get there? What are the steps, what can you do that is LIKE your huge goal but maybe a smaller version? Remember when I was swimming for 5 minutes doggie paddle post-op? That was the start to the goal of the competition! We all have to start somewhere.
3. When do I just sit down and cry?
The answer is whenever you need to. No really, please tell me you have someone who you can be safe with. A place where you can just cry when it all gets to be too much. Someone that accepts you as you are. Because some days, it really is just too much. In chronic pain, life is unpredictable. It’s full of appointments, fears, hopes, dreams that balance on the head of a pin, and a lot of loneliness.
Sometimes we have to admit we have lost things. Lost relationships, lost abilities… these are HARD truths, they hurt, and they break our hearts. Until we begin to accept the truth of some of them it’s really really hard to move forward.
It means we will mourn, be angry, and maybe even lash out at those we love in our own frustration. Cry it out. Don’t be afraid to just let go sometimes. When you are done crying you can pick yourself up again, dust off, and get to the next moment. I know I was afraid that if I afforded myself these moments I would never recover from them. I would stay stuck, hopeless, and downcast. It never happened. Someone was always there to speak the truth to me. To show me where things were changing in me physically, or that I had adapted in healthy ways that allowed a newer version of me to shine.
When we let it happen newness can come from just about any situation.
As I talked with my new friend as she was ready to leave the safety of the hospital and start the next part of her journey I could see a familiar panic rise in her eyes. Her eyes asked me, How will I do it?” ” Am I capable?” “Will I be ok?” She had done an amazing job with the concept of acceptance. She hated she didn’t have use of her legs, but she was willing to see what she could do. I have no doubt she will adapt. She will work hard to become as independent as her body will allow her. Will she regain the use of her legs… I have no idea, and I don’t think any medical professional does either, but I DO know she will remake herself. She will mourn, she will be scared, frustrated, joyous, lonely, and have a vast array of emotions.
She will find those that will encourage her, she WILL adapt – it is her spirit. I encouraged her to write down her gains when they become so hard to keep track of and see. We should all really do that. Our paths are often slow and gains small, but when we write them down and add them up, they can be pretty darn big…. like moving a big toe.
Acceptance means acknowledging where we are today, and you will also change. You will adapt, cry, and make gains, So please, write them down, and remember how far you have come. Give yourself permission to take a moment and cry it out. Life is sometimes very hard, but you will make it through this too. I know you will.
