On September 27, 2017 I woke up paralyzed in my dorm room. One month and five days into my first semester of college, I was forced to take a medical leave in order to recover from what doctors call a "minor attack". This "minor attack"included my bladder, parts of my digestive system, and skin to stop functioning on top of other things that I really am no good at explaining. I was in severe pain that is, to this day, indescribable. I couldn't eat or walk properly, I couldn't feel extremely hot water being poured on my legs.
To say the very least, this event was traumatic. The trauma of NMO slowly debilitating my body came with a messy aftermath, PTSD. I think that what made me so scared and traumatized was not only that I woke up paralyzed (who does that even happen to??) but that there was nothing I could have done to prevent the attack and not knowing when the next one would strike. I am quite a Type A personality now and I think that my personality shift is because of this disease. When things get out of control, it makes me anxious and uncomfortable because there are already so many variables in my life, literally pertaining to my life.
I didn't even know the name of this disease before I was diagnosed and no one close to me did either. We hadn't read about it in the newspapers, seen drugs for it on infomercials, or been informed about its symptoms in health class. When I was diagnosed, it felt like the world imploded. The trauma of already having been through hell was worsened by all the new information being thrown at me as to why I was sick and the possible treatment plans that needed to be started immediately.
From October 2017 to January 2018, I was recovering, starting Rituxan infusions, trying to maintain college relationships, and trying to replan my college career, as NMO limits my ability to travel and requires minimal stress. Things at home felt safe, I was surrounded by my friends and family. Besides, I didn't get sick at home; home was where I came after the hospital and started feeling better. School was where I got sick. School was what got me sick. School was scary. School was the last place I wanted to be.
Of course, I soon learned, my thinking was all wrong.
I remember the week before going back to school, I was a complete mess. I was so scared of having another attack, cooking AIP food three times a day for myself, managing symptoms and treatments, making sure I wouldn't get sick as to not trigger another attack...all on top of normal freshman stresses of what will college be like, will I make friends, will I be able to handle the workload?
I went back to school basically alone. I didn't really keep in touch with many of the friends that I made in the first month. It was challenging getting involved with clubs mid-year or meeting new people because I lived in handicapped senior housing with no meal plan allowing me access to the dreaded dining hall that was often used as a conversation starter (hey did you see the mouse in eick today?). I was a social dud, some weird girl who came to school a semester late and didn't have any friends. It was so hard managing the stress of making new friends on top of the stress of PTSD.
Some nights, I would walk by somewhere on campus, like my old dorm, and literally feel like someone stabbed me in the heart and robbed me of my air to breathe. I would have to take a moment to calm down and remind myself that I am back on campus for a new chapter and that all is okay now. I would kind of make it a game. I pretended I was a knight and my old dorm was fire-breathing dragon who thought he killed me, but I rebounded stronger than ever and fought on. I joked with myself that I was, "the girl who couldn't be killed".
Sometimes, PTSD came in the form of a small interaction, such as seeing people I once knew. However, I think what really hurt the most was knowing how much things on campus had changed and kept going on without me, while I left behind, alone and scared.
I would hang out with old friends and they would talk about wild parties they went to or cute guys they'd been hanging out with. I rarely offered anything to the conversation because really, who wants to hear from a sick girl about being sick? Note, I use the word girl instead of woman because I felt small and like a child, completely powerless to my environment.
When I hung out with these people, I felt like we lived in two different worlds and I hated it. I was in my bubble of silence in separate housing and couldn't even accept the offer of eating lunch with them because I had no access to the dining hall. They were fully submerged in their college experience while mine had just begun.
I felt that I had worked so hard to make and maintain friendships, even when I got sick, and was so confused and hurt when they ultimately fell through. It wasn't their fault, we only knew each other for a month, I knew that, and it wasn't my fault, I knew that too. Really, it all rooted back to this disease deciding to strike when it did. That did not change the fact that seeing old faces hurt more often than it did any good. I felt that I needed to shed my old life, move on, and create new memories with new people in new places.
Talking about this now doesn't get any easier. Even though I am okay now and well adjusted at school, I know what it feels like to be alone, that weird feeling of once belonging, and watching the world move on when you are stuck in one place. I hate that feeling and I don't want anyone else to feel like I did.
For me, thinking about the past triggered PTSD that would leave me alone in my dorm-room crying and wanting to go home, back to where things were safe. The best thing I could do was start my future and think of the beginning of the semester as a brand new start, not something paused and resumed.
In those quiet and lonely months, I had wished there was a guide, someone telling me that what I was feeling was normal and how to feel better about my life. I think the best things that I learned to do when you slowly start to matriculate back into life after an attack are the following:
1. Don't dwell on how things used to be, move on and focus on the future
2. Get involved with new clubs that were not part of your old life
3. Apply for anything of interest
4. Invite people over or out (they don't need to be your best friend but hey it's one more friendly face on campus)
5. Join tinder or bumble because sometimes it's just a nice way to start a conversation or realize who NOT to make friends with on campus
6. Give anyone a chance. My boyfriend and I vaguely knew each other from a group-chat and decided to meet for smoothies. We are now one year strong
7. If you have to live in separate or handicapped housing, make it as cozy as possible.
8. Ask disability support services if they will give you access to the dining hall even if you can't eat food there
9. Go study in the library or student center
10. Opt for group projects (yea I know they usually suck but it is a great way of forcing people to talk to you!)
11. Know that you are strong and capable and that just because one bad thing happened there before, it doesn't mean that it will happen again. You will slay your dragon.
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