pain in public vs pain in private

living with roommates is a hard adjustment for many, but learning to accommodate is key.

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I'm an outgoing person. I love to be with people and socialize. And yes, even when my pain is high I feel the need to be around people. Being alone when in bad pain only amplified the stabbing pains and aches. And, of course when it got too much to handle I simply wanted to crawl in bed, cuddle and watch tv. Laying down became the only way to get my neck to calm down. The rest of the time it felt too hard to hold my head up. The constant shrugging tension radiated across my back and down my arm. I didn't know what was wrong. Why did so much more hurt? Regardless of my inner thoughts and anxieties, I seem to always put on a smile and crack a joke. It was my mask. My way to cope with the pain, "to fake it till you make it". Yet another lesson I learned from softball. But, when the mask comes off? I'm a very emotional person. I push things down and then once they boil up enough it explodes out. I kept pushing down the anxiety I felt about never being able to play again, about why the pain was getting worse, and last, but not least, keeping up with school while in extreme pain.

For the first time in college, I decided to live with a teammate. I thought it would be a great way to make me still feel a part of the team but also get closer to my good friend. My other two roomies were girls I had lived with in my previous years with ease. Oh, yea, plus our emotional support cat, Iris. Iris actually belonged to my roomie Hanna who suffers from Ehlers-Danlos Syndrome. A chronic illness that attacks the connective tissue everywhere. This inherited disorder affected her daily and even quality of life. She dealt with countless symptoms that not many understood. But, we as her roommates understood the privacy, space, and even need for support when we got to do things she could never. The new roommate addition was well aware of all of this. And yet, it was not a good fit for many reasons.

As you remember, sleep is very difficult for me. The nerve pain and inflammation kept me tossing and turning. Switching between medication and my herbal remedy was the only way I was able to calm my body down to get some hours of rejuvenation and rest. Even though I never slept well, I always prioritized school. So, if I had an essay that pre-surgery/pre-injury would have been done in 4 hours. Instead, it would take me 6-9 hours spread out over two, sometimes three days depending on my hand strength, pain and the extension a professor would grant me. I would have to work in sporadic time periods, which went against my own writing process, but it was the only way to get all of my course work done on time. To sum it up, I was not on a regular college student schedule. Meaning, I couldn't have the same routine over and over. At the start of the semester, I slept in the dorm and tried to balance time between coursework, social time, softball practice, and my pain. Sleeping in the dorm might be a weird thing to point out, but it is important. See, I usually would sleep with Cal during my first two years. My freshman year, was a time period when I really needed support, I had just gotten hurt, and he was the only one who gave me support and advice unconditionally. And, I needed to keep my arm elevated at ALL times, so cuddles, me as big spoon, duh. Flash forward to now my junior year, I had spent the last summer sleeping alone and feeling more independent. Or more accurately, more able to handle the anxiety and pain at night by myself. So, I was not planning on sleeping over with him most nights like in past years. Nope, I told my roommate, who was a very close friend at the time, to help me with this and enjoy my own time more. It felt great to feel heard until I wasn't. It all started with the AC. Attending school in Redlands means hot and dry weather. Surprise! Living in a desert is hot. To say my roommate was not accommodated to being in the heat at all is an understatement. The AC unit in our room ran 24/7 ranging from low 60 to 70 degrees. To her defense, the vent was located on an extended wall above her bed, and guess where it pointed? Straight on my bed. Why not just switch beds? Well, I had to have a wall on my left and not a wall or window on my right. I could not risk hitting my elbow or wrist on any hard surfaces at night. After the first week or two of living together, every night the AC would be blasting. And every night I would wake up in a panic, tears in my shut eyes, my arm and fingers purple, stiff, and shaky. Was it the way I was sleeping? Maybe I accidentally rolled onto it. It wasn't until I got out of bed one night to pee that I instantly realized the issue. Out there, out from under my notoriously warm blankets, I froze. The room felt like a freezer. I went to the bathroom and quickly ran into bed and sent a message to my dr that instant at 3:45 Am: "Dr. Riedel. Does a cold room affect nerves the same way as being in the cold outside? The Ac runs in my dorm and I'm noticing the same effects I would feel being out early in the morning for dyfi. I can't sleep without waking up in pain and purple". At 7:45 AM, I hear a ping from my phone, "Jaz, yes. Advise you to not sleep with AC." The next day I spoke to her and it didn't go well. My pain didn't matter, her sleep was more important due to her own personal issues that I was aware and considerate of. So, I went back to sleeping over with Cal. That also caused issues of me not being around enough, or prioritizing him and his friends. So, I tried to keep it more balanced. I asked my parents for advice and they bought me a heated blanket. Even while under the covers & my blanket, my neck would twinge, sending stabbing nerve pains down my arm. After all, I could hide my arm from the AC, but not my neck... and as that became more of an issue so did our living situation.

During the beginning months of school, my prognosis worsened. I wasn't getting better anymore since my last surgery. The more doctor appointments I went to, the more real it was becoming. A life without softball. A possible life with unending pain. This is when my depression hit its peak. Not many people know this. Having to say goodbye to a dream is never easy, but saying goodbye to a piece of yourself feels impossible. And yet, it was the last decision I had to make... I barely talked to anyone about softball. Not even my roommate who was also a teammate. Our outlooks on the sport were different from the start so I knew her bias would greatly sway her advice. I kept my sadness hidden and tried to keep acting hopeful. I only let my walls down in front of Cal, Hanna, and Elise. But especially Hanna and Elise. See, Hanna understood the pain part of me and Elise saw the jock. It was a perfect balance.

My other roomie Hanna, the one with EDS suffers from migraines almost every day. On top of this she deals with not sleeping through the night and as a result, relies heavily on random nap times. The other times she spends spreading her workload over a couple of hours. Our rooms were naturally quiet due to this schedule until she moved in. Elise got it. And even though she and Hanna were on different schedules since Elise played lacrosse for the school, she was EXTRA considerate of how it could possibly affect Hanna. So we refrained from playing loud tv and music. Even loud phone calls would keep Hanna from sleeping, studying, and relaxing after a day full of pain. And those phone calls, came from my side of the wall, from our new addition. These phone calls often consisted of complaints about going to practice or out with friends, the extreme stress of school, and whatever minor/natural ailment was occurring. From an outside perspective, these are all normal things to discuss with people. This I agree with 100%. However, from an inside perspective (the one she realistically had living with two people who have a chronic illness), these complaints were exhausting to listen to day after day. I call them complaints rather than topics of conversation because that's what they sound like to someone like me and Hanna. Hearing someone complain about GETTING and being ABLE to do practice, school, and go to lots of social activities breaks my heart. I wish I could over-exert myself physically. I wish I could sit for hours and hours studying in the library. I wish I could go out and dance at a party like a real college student. But that's not our reality. Everything we do has to be a conscious decision, weighing out all the possible pros and cons. At the end of the day, I can't choose to do anything. My body and the pain it's experiencing guide my life.

The little times I would go out with friends, it would get thrown back in my face. "If you can do that you should be able to do x, y & z" Or the times I would be able to fake feeling like a softball player again, I was reminded that I was the "real" deal. That my experience as a student-athlete or more accurately someone who is injured was not taxing. This is what pushed Hanna and me over the edge. We saw and heard her truth. In an effort to smooth what I thought were miscommunications between my roommate and me, we met and spoke about our issues with living together. I expressed how hearing her complain about not wanting to go to practice, complain about playing softball for her dad's approval and pride (not her own), and lastly how she hated working out hurt me. It was making me feel like I was never doing the right thing or enough. It also broke my heart to hear that she didn't play college ball because she loved softball, but for the approval of an outside opinion. I worked so hard my entire life to get on a college roster, and yet here she was after walking on, taking it all for granted. I love softball and I cried over missing it and that part of myself every day during my junior year. I even got into small arguments with Cal about him talking about how happy he was to be back on the field for another year of baseball. She did not care. In fact, she told me that my and Hanna's injury and mood made her so anxious and that she needed me and Hanna to control it more. LOL

She was well aware of both of our health histories prior to moving in. She was even asked by the school to sign a contract stating she understood Hanna's disability and her need for an ESA (the cat that she hated, but that's not my story to tell). And as for me, she was my close friend, someone who I had cried on the phone with telling them how tired I was of being in pain and away from softball. So, when I was called a drug abuser, pill popper, pot head, lazy, sensitive, and many other wonderfully stereotypic phrases for someone who is chronically ill, I had enough. The way a person copes with medical trauma should NEVER be judged. You never know when they are showing that they're vulnerable or they're a badass survivor. But always remember that either way they can be both.