I Didn’t Get Invited To Life

“Please help me. Why won’t you look at me? HELP ME”. These are the words I scream to family members in my nightmare. Spoiler alert. They don’t help me and they stand there and laugh. I used to have this dream all the time a few months ago. After I came back from Baltimore, the nightmares stopped. It wasn’t until a couple weeks ago that they started again. Worse than ever. Lately, I’m always stressed. Scared for the next day. Ready to cry or scream (I don’t know which). I ask a lot of questions when this happens. Why? My family has never refused to help me. Why would this be a nightmare? It wasn’t until this past week that I began to understand. Just another dusted off traumatic feeling.

If you’ve been reading my blog, you understand that I got diagnosed with CRPS when I was just 17. I was about a month into my senior year of high school. I’m sure you understand that senior year has some pretty important events. Last first day, homecoming, prom, senior dinner, parties, and so much more. But another event that is year long is the excitement. The nervous, ready for next chapter excitement. Sadly, I don’t know this from experience. My senior year may have been one of the toughest years of my life. Sure, I was nervous. But it wasn’t the same type of nervousness others my age were experiencing. My nervousness was out of fear. Fear of the next day. Fear of every step I took. And fear of giving up and just sitting and feeling pain my whole life. I haven’t thought about this period of time over the past couple of months. Not until it smacked me in the face harder than ever.

Here’s a fact about me. I have 4 siblings. 2 of which are twins, they are both 17. Seventeen. You tell me what is special about that age. Yep, they are going into their senior year. Now, I have always been a supportive sibling. I would put every last thing I have going on aside to help my siblings. So, I went with them to tour Virginia Commonwealth University. Did I know it would sting? Sure. I always planned on going there. Did I know it would unleash yet another pain inside me? Not until I was halfway through the tour and about to cry my eyes out. It was on that tour that I realized the whole experience of watching the twins have the year I never got wasn’t just a sting. It was a bullet into my chest. And I am trying to figure out how to put myself back together.

It’s been a couple weeks since this initial event happened. Every time one of the twins talk about being seniors I get so upset, scared, and overall paralyzed. I am reminded of not only missing that year, but also all the pain that came along with it. Dr. Effie (my pain psychologist at KKI) always said I was probably depressed during that year. I disagreed because I refused to admit I was in that place. But that is just the ignorance coming out in me. In all honesty, I was depressed. No one wants to be reminded of those feelings. Especially when they are working on living every day and staying afloat. I stay up at night with fear of the next day as if I am back in that year. As if I am living it again. All because my siblings are 17 and starting their senior year- oh yeah, and one of them got an injury.

Story Time

So many things can remind us of what we lost and the traumas we experienced. Sadly, as I said earlier, I have been getting those reminders often. One more was added to and overflowed the tank of things I can endure. Let me explain. Olivia is one of the twins and my best friend. She recently had some struggles with a foot injury. Her dream has been to dance professionally and right when things were coming together, her foot gave up on her. Remember, this is her senior year. Now, does she have chronic pain that can shut down her whole life? No. But my brain goes into panic because I know that her future plans are at risk and her senior year could be tarnished. Anytime I hear or talk about it, the panic sets in. I feel like I need to stop her life from being ruined- even though no one said it would be. Most people don’t have their plans they made in high school work out, but since Olivia is so close to me, I panic. Like I need to do something. Like I need to stop it from happening. I just don’t want her to go through anything like what I went through. It makes me sick thinking about it. Forget the level of pain, even just the mental toll it can be to have something ripped out from under you. Olivia still has a high chance of dancing professionally. She still does the things she wants to do and she is still loving life. But that doesn’t mean it doesn’t scare the shit out of me.

It’s crazy what our brains piece together. I learned all of this from my doctors. I just met with my therapist for the first time after a month. Technically I was discharged, but she said I could always ask for an appointment. When she told me that I said “ohhh yeah sure okay”. But I never thought I would. But I’m desperate, I’m tired, and I’m in emotional pain. She suggested I do something to get all of this out. So, here I am writing a blog about it to the world. The only Alexis way. So I will be completely honest:

I feel like I missed 5 years of my life. It started with total trauma senior year. I missed so much and I feel like I am trying to catch up for all those years- but never will. The twins are (I pray to God) going to have a “normal” senior year. They are going to experience all the amazing things, they will move into a dorm, make new friends….. I am so happy for them. So beyond happy. But it hurts. It hurts seeing them do it when I know I never will. It makes me ask the question: what did I do? What makes me deserve so different? Answer. Nothing. I didn’t deserve what I went through. No one on this planet deserves it (even my deadbeat “dad”). These are just the way the cards played out for me. I can’t do anything about it. My old self would have said I need to move on- oh crap honesty for this blog-my even now self would say that. But according to my therapist I need to grieve. As I am writing this, I am starting to agree. I can’t move on if I don’t grieve all the things I lost and missed. All the “growing up” kids do. I never once even thought what I went through was especially hard-when I was going through it. But seeing the twins get to the age made me realize that what I went through was hard as f*** and I was just a kid. During that time, my brain and body did what it needed to survive. I can’t spend time thinking I could have done anything differently. It hurts. Bad. Hearing them talk about everything and their future plans and this year hurts. Do I want them to stop telling me? Hell no. Hell no. But can I let myself feel the pain? My body has been fine letting ME feel the pain for 5 years. Now I’M going to let it.

So here I am. Now grieving. Hurting in a way that I am not used to. I won’t ever get to attend college as an on campus student. I won’t ever get to actually enjoy that senior prom without worrying about all the pain during and after. It kills me. I am also realizing that I may be starting to understand this nightmare. During my senior year, people knew I had an illness. People knew it was pain. But no one (not even my family) knew exactly what I was going through. I was fighting for my life and body back and no one could help me. I felt helpless. I felt isolated. I felt like I was getting attacked by a cage that I could never break free from. No one knew just how bad it was. THAT is what the nightmare is going back to. I was silently screaming for help during the first year of pain. No one was helping or understanding enough, but I also never fully shouted everything. Is it my fault? Hell no. Is it their fault. Hell no. But that is what my brain is going back to. You know what? I can’t fight it anymore. So I will let it grieve and feel all those feelings I never allow myself to have.

The last time this happened, I was at treatment and kind of forced into facing it. I don’t have the doctors here to do that now. So, I will need to do it myself. I wish I hadn’t missed so much time of my life. I feel like I was stuck in one place and just kind of breathing. I was alive but not truly living. I get so upset thinking back because I wasn’t even all that happy the first year of college. Not fair. It wasn’t fair.

Sure, I didn’t get a ton of experiences. I didn’t do any of the fun college experimenting that most other people get. During this time in life, people tend to figure out certain things, people, foods, and experiences they like. I don’t have a long list of what I know about myself because I didn’t have this time. It feels like when you are in high school and didn’t get invited to a friend hang out. That was exactly me. I didn’t get invited to life for 5 years. As you are reading this, you can begin realizing that there was so much I missed out on and lost. So much learning. Clearly, because I have written it all out here. That’s what I needed to do. So now, I am going to turn this traumatizing “left behind” party into something that actually gives me an upper hand in life. All the classic milestones were missed. But there were some things that I learned that many others don’t get to learn in their lifetime let alone 17-22. I learned an amount of compassion for people who seem “different”. This compassion is all consuming and often, I know what the person needs to hear. I can thank the invisible pain for teaching me that one. I also learned to appreciate every little success because I had to relearn the littlest things like using a fork and writing. I have learned how to speak and write in a way that can help everyone understand a pain condition that so many doctors don’t get. All because I eventually was forced to advocate for myself. I learned what is truly important in life because that was what I was fighting for. Finally, I learned how to make those listen to me because I had to figure out how to listen to myself.

I am so grateful for the things I have learned in the 5 years of life I missed. No, I didn’t do all the typical milestones other people my age did. No, I don’t have plenty of photos of me and my roommates at parties on my instagram. But God knew what he was doing when he had me make that sacrifice. I learned things about myself and this world that I can take with me and use the rest of my life. I don’t know if everyone can say that. How much of what was learned in parties can we take throughout life? I guess we will just have to wait and see. But I like my odds.


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