As I’m writing this gibberish, ranting mess, I’m realizing it has officially been a long eighteen months. Nobody warns you how tough it may be to take a year to focus just on yourself. At least for me, it was a nightmare… But this began even before eighteen months ago… Injuries from all the way back in second grade, to eighth grade to my junior year, setting me back for months until I finally decided to stop letting them control me in the midst of my senior year. Eighteen months. Five MRIs. Four different times at physical therapy. Three Surgeries. Two Shoulders. One knee. And also one rib. This is all my life has been for eighteen months and I’m finally free, well sort of.
With my EDS, I know I’m gonna continue suffering, but no longer to that point. It’s been rough these last eighteen months, especially the last year in general, I couldn’t go to college. For the longest time I never planned on taking a gap year, till suddenly I had no choice, but looking back now I’m glad I did it. With that being said, though, it was tough and not something I would highly recommend. I was in this awkward position (and still am) of; “Well I’ve graduated, but I’m not in college, so am I a ‘college student’ or am I just an ‘eighteen year old’?” It’s made for some hard times I didn’t expect, lots of tears and stress because I feel left out, but at the end of it all, only I was aware of why I was putting myself through this; my health. Trying to get through high school was my personal version of hell. Even though I was homeschooled and had that advantage, my health still made everything a nightmare.
I couldn’t always get out of bed and after having two back-to-back concussions sophomore year, I was basically set up for failure… both literally and theoretically. Then going into junior year, I was in a complete state of shock due to my shoulder injury and other things I will talk about another time. I couldn’t even get back into school like I would have liked to. I never hated school till I let my injuries overtake me and who I was; so forcing myself to do it while my body fought me wasn’t ideal. Add in a broken rib and I don’t know how I finished junior year. Then my senior year began and I was still in massive pain from my rib. After finally finding out I hadn’t just broke it, but dislocated it. Now we had found certain solutions to help my rib (shout out to Victoria’s Secret for having bras with boning that go onto to your rib), and my shoulder wasn’t as bad, then my knee started hurting. And so midway through my final year of high school, I couldn’t deal with the pain anymore, so we started with a rib MRI.
I ended up having to have two of them because let me tell you, rib MRIs are hard, (this is coming from somebody who’s had over ten MRIs in total). We finally figured out where the dislocation was and were able to get it popped back into place and go to therapy and train the muscles to hold it in. Now that didn’t completely work, because every time I puked, (gross) or sneezed hard, it popped out, but hey; if anything could work, even just for a week or two, I was thankful. In the midst of getting my rib fixed though, my knee started hurting.
I had always had issues with my knees, going all the way back to when I was only seven, but I decided I was done with this pain too, and had another MRI and “Will you look at that?” the first surgery! I went to prom in sneakers because of my knee and the next week I found out I was going to have surgery right after I turned eighteen and graduated. ONLY FOUR DAYS LATER. My first thing as an adult was signing for a surgery that even my doctor wasn’t sure what he’d find doing it. Turns out, I had two tears and a lot of crap in my knee.
Apparently I finally decided this was the right time to take a break and have surgery because waiting any longer and things probably could have been worse. So surgery happens, then physical therapy, and then suddenly my right shoulder starts hurting again.
I had already been through the whole process once before, when I was sixteen of possible shoulder surgery. So we started that process over. It was already July and I realized there was definitely no way of starting school with me already looking at possible shoulder surgery. The dreams I had of college were gone, the only thing I had to look forward to just went away.
It’s hard watching your friends start college, meanwhile you’re at home icing your shoulder and living off pain meds, but in those moments I really forced myself to think of how much better I will be. I watched my sister go through shoulder surgery as I was prepping for possibly my own, but she’s years older, I couldn’t let myself suffer another extra four years as she had. I was alone in those scary moments as I watched everybody else’s life go on as mine was put on hold. How do you watch your life slip away while trying to remind yourself, it’s for you, you’re doing this for yourself. You’re no longer going to suffer, you’re finally going to be normal. But how are you normal if it’s now August going into September and you’re going into another MRI, where the MRI techs know all about you and are comfortable enough to pick on you? When you can see the pity on people’s faces when you explain countless times; “No, I’m not in college, I’m taking this year off to focus on my health.” While you know that’s a lie, because you make it sound like it was your choice, when it never was. You look at your shoulder as they stick the needle in for contrast, and you just have to wonder how the heck did you get here? Were all the sports worth it? Was it worth not listening to most people’s suggestions of quitting and continuing on when you knew this could happen? Will going through this surgery be worth the abandonment?
What most people don’t tell you about focusing on your health is how emotionally draining it is. When you’ve just had your second surgery and nobody cares to text you to see how you are, you ache. When people only visit you the day you had surgery because they want you to be loopy from the drugs, you feel embarrassed. But, when you’re finally ready to be off the recliner and still nobody has contacted you since that first day, when you’re ready to be a bit normal and social again, you feel lost and alone. Why is it the moment when you need people the most is when they decide they don’t need you? You’re ready to be yourself again, but they’ve moved on. Did they ever actually care?
And then you think those thoughts again: if only I had gone to college, if only I didn’t have to have a second surgery, if only I didn’t have this stupid disease. But you also think about if the “if only” questions you ask yourself are even worth it; would your life had been any different when you were already feeling abandoned to begin with, even before all this began? It’s so hard to remind yourself that what you’re sacrificing is for you. It shouldn’t matter about others, because you’re taking care of you. YOU ARE WHAT IS IMPORTANT.
Those people shouldn’t matter, if they don’t care that you’re going into physical therapy for a third time, then shame on them. If they don’t care to ask how you are, they’re selfish. If they only want you when it’s convenient for them, then they shouldn’t matter. When taking care of yourself, especially when you have a disease, you have to realize that if people don’t understand what you’re going through, or at least aren’t willing to try and understand, they’re probably not worth it. And even though you’re feeling abandoned and alone, better people will come along. People who don’t ask how somebody else is in front of your face even though you’re in a sling. People who don’t roll their eyes when you mention an injury, or surgery. People who actually care and want to know.
When my left shoulder started hurting, I didn’t want anybody to know. I put up with so much harassment with my other injury/surgery, I was done. I didn’t want to go through it again. Heck, I kept my other surgery a secret for a while because of the same reasons. But I realized something, even if I mentioned it to people who I thought cared about me, they really didn’t. They just brushed it off as, “Oh well! You’re Emily, you’re never gonna stop getting hurt and having surgery.”
Nothing hurt more than watching people I had known for years stop talking to me because I had been out for so long. That second surgery really killed me, so going into my third I was just done with everything. I just wanted the surgery to be quick and easy and over. I didn’t know going into it my dad was going to have cancer as I was wrapping up therapy for my right arm and starting the surgery process for my left. I don’t know what hurts more, people not caring about you and your physical health, or people not caring to ask you about your mental health as you go through your dad having cancer and you’re about to have a third surgery in between his two.
I wrapped therapy for my right shoulder only a day before surgery on my left and at that point I was so drained, I just wanted everything to pause and stop. I wanted to be back to normal. I didn’t care anymore if that meant pain and sucky friends, I just wanted more than one person to be there as I went through all this alone. I wished I could go back, stop everybody from not talking to me anymore. Heck, maybe just go back and not have those two surgeries so I could have gone to college and make actual friends, but you have to fight against thoughts like that. You have to remember it’s okay to be selfish and want your own health to be put first. Even if you’re alone, you should always be first in your life.
So, no matter how many second thoughts you have, as you go back to have your third surgery, you realize maybe there are people who care. But they’re not always your friends, or even your family, it’s your doctors and nurses who will always care and help you put your health first. It’s weird but amazing being able to have nurses and doctors who know you well enough to pick on you. Who know your parents and your siblings, and heck even your aunt because she’s also a nurse. They understand you, and when you have three surgeries in nine months, seven in total, they learn to know you as a person. They joke about your past surgeries, pick on you over your dad, and talk about what a weirdo you are because of your disease.
They care. Not because they have to or are supposed to, because I’ve had to deal with difficult nurses who I wanna just ask, “Why are you a nurse if you act this way?” but it’s because they want to care. Finding people like the ones I’ve been lucky enough to find can be hard, but if I’m gonna have to go to the doctors constantly, I’m glad it’s to see them. They make you realize that your surgeries were needed. You needed to be fixed. You needed to take of you. It’s not as if I don’t take care of myself, but knowing you’re doing the right thing by focusing on your physical health… even if not by choice, it’s reassuring. Like I said, as I write this, I’m finally free. I’ve been released from my doctor and from physical therapy after my third surgery three months ago. I can finally do whatever I want again, as long as it’s “not stupid.” So I’m going off into the world again, finally, possibly getting to be who I once was…
But I’m not that girl anymore am I? I still can’t play sports, and I still don’t have many friends, let alone ones who care. So now it’s time to change gears, go from taking care and control of my physical health to my mental health, because I’m going to have to learn who I am again. These last eighteen months have really shown people’s character; including my own, which means I’m going to have to move on. No more, feeling abandoned and alone, no matter if that’s the truth or not. I have to learn a new life. One with less pain and putting myself first. Where my disease doesn’t control me, but I also don’t let myself get so messed up in all my ligaments.
It’s a tough road ahead. It’s hard sometimes to wrap my head around all that has happened. It’s weird thinking my rib doesn’t dislocate anymore since my shoulder surgery. And that I don’t wake up at all hours of the night in pain because a shoulder dislocated. Realizing I can fit in certain pairs of pants again because my knee isn’t huge and swollen anymore. I have to start adjusting, and if people don’t want to learn to adjust with me, that’s their loss. In these eighteen months I’ve realized that I’m an adult. I’m done putting up with people harassing me because of my injuries, at the end of the day I have a disease and I can’t help any of it. But you know what? God hasn’t healed me from my disease for revelations like these; though I made feel abandoned, beaten down, and just flat out exhausted from everything, I live through these things to write them down. And to put my experiences into words to help others.
You may never know what I’m going through if you’re reading this, but it may teach you something; don’t leave people. Don’t stop talking to them because they’re not in front of you daily, or they’re no longer on your team. Maybe they’re going through something you don’t understand. Those are the moments that people need you the most, so don’t leave them when they’re drowning; help them stay afloat. Even if somebody takes a year to learn about who they are, or to take care of their health, stand by them and hold their hand because I don’t want anybody to go through what I went through. A gap year can either be the greatest, or the worst thing, just don’t let it be the thing that makes or breaks you.