#talkingback

A kids and teens perspective on chronic life


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The Calm AFTER The Storm

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By Michaela Sullivan

Almost everyone has heard or will use the expression “the calm before the storm” at some point in their lifetime. It’s a popular idiom, used to illustrate the moments before chaos ensues. But what about the calm after the storm? The strange feeling of Zen that comes across you when a disaster is over, and you are still standing. My life was a bit of a medical storm up until January 20, 2016 when I underwent surgery that literally changed my life. Now as I sit here in the wake of it all, I realize how big my storm truly was. 

The months before my tethered cord release were unequivocally, the worst months of my life. I had lost nearly all feeling in my legs, and as a result, my left foot turned in at a 90-degree angle. My left leg was also in near constant violent spasm, and it was very hard to climb stairs and my legs were shaking. My pain was so bad that it was hard to sit for more than 20, sometimes even 10, minutes at a time. I was heading towards needing a wheelchair. I probably should have been in one, but I refused, because I’m stubborn. 

As soon as I woke up in the ICU after surgery, I could feel a difference. My leg wasn’t jumping involuntarily anymore, and I could FEEL THEM. My back pain was surgical, and of course it hurt, but even that felt different. I know the pain meds likely had a lot to do with it, but I also felt like It was a miracle.  Even when I was on pain medication before, the pain didn't really go away. Now I was feeling so good, that I badgered my nurses to let me cut the 24 hours of flat time that I was required to remain horizontal short, but to no avail. But after 24 hours of lying flat, I was up and ready to go, I wanted to walk further than I think my mom or maybe even the nurses were comfortable with. 

So now here I am, 2 months later. I’m recovered and I’m doing great. While I still have EDS and POTS, the comorbidity that was causing most of my pain and problems has finally been discovered and dealt with and I’m beyond grateful. But now with this new calmness, I have a lot to think about. It’s all finally hitting me at once, and there are a lot of mixed feelings.

There’s trauma and sadness, from the programs I went through and from the doctors who just didn’t get it. When it’s happening to you, you just put your head down and get through it. But looking back after, reliving it all, that’s another story.  

There’s anger. Oh, there’s anger. Towards the doctors who missed this diagnosis, who said it wasn’t possible. Towards the doctor that assumed I was exaggerating my pain. And towards the psychiatrist that had the nerve to diagnose me as somatic after one or two brief meetings, at a time when I was in a high pain state, in the hospital and clearly not my best. They made me feel that pain I was feeling wasn’t valid. Didn’t they see my x-rays?

Right now there is also sadness. Lots of it, actually which is surprising to me. But now I am thinking back about what if this was caught earlier, I could have lived my high school days. I wouldn’t feel so isolated and I would have made more memories than I did. If tethered cord was what was causing all of my problems, and that’s what my good doctors truly believe, then I’ll have missed out on 6 perfectly good years of my life. It should’ve been caught earlier. That brings me back to anger, though.  

Despite all of these negative feelings, there is finally a lull. A calmness that I can bask in and enjoy. I can now go to college and not have fear as to whether or not I can physically do it, I can spend time out in public instead of on my couch, and I can finally feel no pain. Yesterday, my friend and I took a hike though the woods to the ocean. Nothing big, it was maybe a mile and a half total, but the terrain was rocky. When I was a kid, I would often do that hike with my family. Then we tried it one year after my first spinal fusion, I just couldn’t do it, my back hurt too much so we turned back. My mom assumed I might never be able to do that walk again the way things were going with me. Well, yesterday as I sat on the beach at the end of the trail watching the small ocean waves, I felt the calmness on a whole new level. I felt hope and happiness and a real sense that I am truly on my way.  

I have my life back, and that beats all of those feelings.