The first part of this article was presented as part of a series in the Pilates Method Alliance (PMA) quarterly newsletter on brain injury. If you have just read the PMA newsletter and followed the link to Pilates Anytime, please begin reading here. If you have not read the PMA piece, it begins with a message from PMA Editor, Marcia Polas. There are links included in her note if you would like to read the other two articles in the series. As planned with the PMA, I have added to my story for Pilates Anytime readers and will continue to write on this subject as my healing continues.
Warmly – Kristi
Here is the post originally written by Marcia Polas:
It is important to understand that Kristi Cooper agreed to write this article just six months after her accident. Because of the editing process, we required her to submit her article in mid-April. The concern for all of us involved, including Kristi, is that timelines are so non-definitive in brain injuries, her feelings, impressions, and even recovery can change so much in a month. To ask her to share her story in under a year after the onset of her concussion is asking her to write a story that is not complete, and to offer exceptional vulnerability during an already stressful and confusing time.
Kristi and I communicated multiple times in this process. She placed her faith in me to keep her safe and to make sure that what you are reading today is not a misrepresentation of her wellness, her capability as a teacher or business leader, or her emotions. Having gone through a concussion myself over 15 years ago, I understand everything Kristi describes in her article. I also clearly remember being regularly asked to rate my headache on a scale of 1-10, with 10 being a need for hospitalization. My thought six months after my injury was, “What will I do if I never have a pain level below an eight?” If you’ve suffered a concussion, Kristi’s story will sound familiar to you and like me, you will barely be able to contain your desire to hop a plane and race to her side. Kristi will continue to heal and she will also continue to tell this story via Pilates Anytime. This is just a small portion of the story she has to tell. We are honored to be trusted with it.
I’ll ask one more thing. If you have not yet read Jessie Lee’s article about her concussion and recovery, stop and do that first. I think it offers a great deal of insight into what Kristi is experiencing now and the story she tells. Next read Joy Karley’s article and make note of her advice on how to help friends, family, or clients through a sudden and scary surgery/health issue. Each of these women have shown us their strength, intelligence, and vulnerability in both the injuries/health issues they’ve lived through and their willingness to share their stories. But I guess that doesn’t surprise me because they are after all, Pilates teachers
With the greatest affection and respect for my friends and colleagues Joy Karley, Jessie Lee, and Kristi Cooper
Editor, The Hundred!
It’s always been easiest for me to dance later in the day when I feel like I’ve done all I can and no one, including me, expects anything from me. It is in those moments I’m most free in mind and spirit. That’s when dancing happens through me, not because of me. I should probably mention that I am one of the few Pilates professionals teaching continuously since the late 80’s who isn’t a former professional dancer. I never studied dance. I never played any sports either. I’m not a dancer or an athlete, but I am a mover. Dancing alone is my favorite thing to do. I love it even more than Pilates.
In mid-November 2016, I had just settled into my new apartment. The PMA conference, the party we hosted for 500-600 PMA members, moving to a new place, and even the Presidential election were all behind me, and I had finally recovered my energy. I was ready to dance again. I needed to dance again! So, as I do most nights, I pushed the furniture back, changed the lighting, pulled out my rebounder in case I wanted to use it, opened the double doors to the patio, and picked my music. I think it was mostly Lady Gaga that night.
Just before pressing play, I received a FaceTime call from my friend Jane who lives in the UK. I put socks on to keep my feet warm and ready to go, and was happy to spend the time catching up with her. By the time we hung up it was late for me, but still, I just had to move! I gave myself 30 minutes to play before I would send myself to bed.
Gosh, it felt so good to move with energy again. I hadn’t felt that good in weeks. I was definitely channeling my inner Gaga (I prefer to dance as if someone were watching)! I didn’t feel like using the rebounder so it was just off to the edge of the white fluffy carpet I call my dance floor. Then, somewhere around the 26th minute, my head hit the floor so fast and so hard I believe I was knocked out instantly. I heard the sound vividly, but had no idea how I got there. I do recall having the thought “Who would do this to me?” for it felt as though an entity picked me up by both ankles and swung my head to the hardwood floor as if chopping wood. I sat up right away and turned to my phone to text Jane. Through tears, the kind a young child cries when someone is really mean to them (my head was killing me, but for some reason my feelings were hurt too), I typed “I just fell on my head hard and I think I should say it out loud plscallihrs.” I was trying to tell her to call me in an hour, but by the time I reached the end of the text, it was gibberish. She called right away. I was in massive pain, but now felt embarrassed for being so dramatic as to text her. I only answered FaceTime long enough to hang up on her so she couldn’t see me crying or the palm sized bump on the left side of my skull that was starting to part my hair. I texted her again to say, “I’m fine, I was just scared.” I later learned that the time code between ending the first FaceTime call plus the 26 or so minutes of dancing, still left a fifteen-minute gap until I sat up and contacted Jane again. I can’t say for sure how long I was out. I thought I sat straight up after the fall. I didn’t. Somewhere around the 26th minute, in an instant, my life was changed.
I could not stop crying. I became certain I was going to die, so I cried more. I’d never felt such pain, so I cried still more. Yes, I was alone. No, I did not consider calling 911. No, it didn’t occur to me to call a local friend. What I did “think” to do was to put the apartment back together and clean it so that when I was eventually found, my place would be neat. How very “Pilates teacher” of me to clean up before I “left” the space. I went on to take a few photos of the ceiling even though I was aiming for the bump on my head, then, naturally, I went to bed.Everyone knows you should NEVER go to sleep after hitting your head. Everyone except someone who has just broken her brain.
I remember turning my head on my pillow which moved my hair near the bump. I had never felt such pain in all my life. It shot me from dead asleep to upright. I noticed I was surrounded by tissue. I had still been crying even as I slept. When I sat up, crying turned to sobbing as I wailed the words, “I can’t believe I’m going to die!” I still didn’t call for help.
That was the night of November 16th. I’m told by everyone, that I’m fortunate to have survived to see November 17th and 18th given I didn’t seek help. I’m also told I’ll make a full recovery, but no one can tell me if, or when I will feel better or what a full recovery means.
I spent the next 10 days or more in excruciating head pain, hardly able to talk, stuttering, forgetting, staring, crying, wearing a hat of ice, seeking quiet, seeking darkness, and trying not to think.
That’s literally the prescription for concussions once you make it through the first 24-48 hours, “Don’t think.” Try it! It turns out not thinking is something I had to think about how to do, so I was in trouble from the start! You’re also told, no screens (TV, texting, computers, nothing), avoid any stimulation to the brain (talking, loud noises, bright lights, reading, any kind of problem solving) and most of all to rest.
When I broke those rules, and I did, every symptom worsened. It was as if my head was screaming, “GIVE ME A BREAK!” I’d walk into and out of rooms all day (I only have three if you count the open kitchen and living room) wondering what I was looking for. Sometimes I’d just stand there with what I affectionately call my "Jack Nicholson in the hedge maze face" (the end of the movie The Shining), although I could just as easily call it my "Jack Nicholson after the Lobotomy in One Flew Over the Cuckoo’s Nest face" too. For some reason, I couldn’t close drawers or doors behind me and I struggled most with folding laundry as a task. My tidy apartment now literally looked as if someone had broken in looking for something valuable. I assume they never found it, because they kept coming back to look again, day after day.
The ransackers don’t seem to come as often these days, but I still put the laundry back in the dryer often and make the rounds once or twice a day to see what doors I can close now too. It’s not so overwhelming for me if I don’t see the mess inside my house. I guess that’s the nature of a brain injury itself. If no one can see it, we can all pretend it’s not there.
I’d love to share the evolution of the process of recovery, but that suggests there is a process and that I am aware of it. It also suggests that I am on a certain trajectory that is consistent enough for me to share with you when I have had almost no certainty in six months. I am so certain I am getting better on some days that it is shocking when the symptoms return as if it was day one all over again. If there is any pattern to this “process” it’s that I repeatedly believe I’ve turned a corner, only to find out I haven’t, or that I don’t remember which corner I just came from, or where I was going to begin with. The further apart the periods of shock and “ahhhh,” the more profoundly devastating it can be.
I didn’t know how bad off I was in the beginning. No one did, until they spent a little time with me. Three weeks later I hadn’t changed much, except new symptoms were creeping in. I thought I’d be better in three weeks, but now my vision and hearing were becoming a problem. At that point, I finally did get a CT scan. It was all clear. I’m told nothing is wrong with my brain. It’s been six months since I was getting my Gaga on and the daily pain in my head suggests otherwise.
On November 16, 2016, in the instant my head hit the hard wood floor, the Kristi I knew the previous 46 years was gone. I’ve only seen glimpses of her since. The new version of me, I call her Kristi 2.0, is living with a traumatic brain injury (TBI) and six months later, I still don’t know how to work all of her features or why the pain never seems to go away. Sometimes I really miss the original me, but mostly it takes all my energy just to get through the day as whoever I am now, so I don’t dwell for long on my former self.
I’m sharing my story, because I had no idea what I was in for after the fall. I still don’t. What I do know is that I gave myself a concussion and it happens every 13 seconds to someone else in the US. 1.7 million people each year. I’ve worked with TBI clients before, but if I had any clue how serious every concussion is on the visceral level I do now, or how commonly they occur, or what the person could be going through, I might have treated clients and friends differently, and maybe my road to recovery would have been met with less fear, disappointment, anger, sadness, and better self-care. Maybe.
I continue to look for answers, and realize that sometimes I’m searching for hope. Mostly, I’m seeking strategies on how to live in a world where everything but me is exactly the same as it was. I look the same. I try hard to act the same for the sake of those around me, but I am not the same. I don’t match any of the concussion stats beyond the ones mentioned above. As far as I can tell, the rest are all subjective. “It will take 7-10 days to feel normal.” “It will be at least six weeks before it is all behind you.” “It will be no sooner than three months before one with a concussion can expect to fully recover.” Other statistics say, “…even a person with a mild concussion may get better in six months, or never.” I’ve read so many stories, but in six months, I have not found my story. I agreed to write mine while I’m still in the process of healing because the idea of someone else finding his or her story in mine gives me hope and purpose.
I don’t know what the Universe's plan is for me. Everyone else seems to know there is one, so I take their word for it. I’ve never really liked that phrase; “The Universe must have a plan for you” as if I am somehow outside the universe. I will gently suggest that those are not helpful or comforting words for someone with a brain injury, no matter how good your intentions. In fact, it actually feels like more pressure.
Depending on when you ask, I’ll tell you a different story about the process, the evolution or what I think the Universe's plan is for the two Kristi’s since the one fell, and the other started becoming.
I could say “I’m getting better” then fake it once I realize I’m not (again). I know people that have had to do that, so do you. Lots of people have had to fake being okay after a concussion. I don’t know how they did it. I cannot imagine that even on my best days of trying.
I could limit sharing my experience by speaking only to the truths that are positive. For instance, I can’t believe the amount of help I’ve gotten without asking. What’s more impressive for me is that I ask for help at all. I have to. I’m okay with asking for help (another shock), that is definitely true and positive, but not the whole story for sure.
I still have trouble summarizing the experience. Speaking about a brain injury in the midst of one might be like trying to contain liquid silver. By the way, who am I summarizing it for? Am I trying to “process” the trauma for myself? Am I trying to help you understand me or to make you feel better about how much trouble I have? Is the Universe going to grade me at the end of all this? The answer is “Yes” to at least two of those questions and probably the third too. None of them are different enough from my old way of thinking though to have any bearing on the outcome of whatever this lesson is hopefully teaching me.
There are some things I do know:
I know that for such a common injury, I’ve never felt more isolated in my 46 years of being an introvert.
Finally, I know there is not enough information available related to brain trauma, not even close.
What I don’t know is what I was spared for. Am I supposed to “do” something with this experience? Kristi (the original version) did things and when those things were done, she’d look for more things to do. She was a mover and a “do-er.” If I’m expected to fully recover, I guess I’m supposed to do something with this then?
That thought is exhausting.
I want to summarize the experience, but there is still so much that doesn’t make sense to me. Trying to make sense of it all now really just makes things worse. Pretending I am moving along as easily as time seems to be has proven to be a problem too. It turns out faking my abilities for one second longer than my brain can stand renders me almost unrecognizable in a matter of seconds to the very people I am faking it for.
I hope to do better for those that deal with TBI’s personally or professionally and also for myself. For now, this is my personal summary, offered up in the same way every other bit of TBI information seems to be offered up, in statistics:
90% of the time, I’m thankful I’m still alive and that I didn’t suffer an injury so great that it required re-learning basic motor skills, caused permanent disfigurement, or total dependency on another for care. The other 10% of time is divided between questioning how I can be so dramatic about such a common injury and wondering why the Universe didn’t just finish the job when it had the chance.
As of today, the day I am writing this all down, I have graduated to the “healing after six months, or never” category. I have new options to consider regarding lessons I might learn from all of this now, so I am.
Maybe the lesson right now is that I don’t have to do anything about this at all. Just maybe, for once, I can and even should just experience and accept what is, whatever it is, whatever it is going to be, whatever it is supposed to be. Maybe there just aren’t any answers, yet. Maybe it just is, for now. Maybe this is it, forever. Who can say? Maybe I’ll think about it tomorrow. Maybe.
In the meantime, I’ve decided to live. I can still move and I still want to. I would do well to not think on things much more than that, nothing more than what is right now. So tonight, I’m pushing the furniture back, changing the lighting, opening the double doors to the patio, taking my position on the white fluffy carpet, with the rebounder at my side, and I am going to dance. Tonight, I will dance with what is… barefoot!