by D. A. Roach
“Long line? I hope you remembered the ketchup and relish.”
“Sorry, I didn’t.” It was Jay. My eyes popped open and I sat up.
“What do you want?” I didn’t mean to sound so cruel and cold, but I didn’t know where we stood. How random of him to plop down next to me when he avoided me all week.
“To say hi,” he looked forward toward the stage, “and sorry for being an idiot. I was so embarrassed by that bruise - I mean, it’s not like you tackled me - but my arm looked awful. I didn’t know what to do - I just.. ran.” He looked at me but my face was unreadable - blank and listening. “Can we try again? Life kinda sucks without you.”
“I need to know, are you gonna’ run and shutdown every time something gets hard? Because I can’t be in that kind of relationship. It hurts too much. I have feelings too, you know? I felt terrible when I saw that bruise and I just wanted to make it better. All you had to say was “no thanks, I’m really ok.” Instead you treat me like...like I’m your enemy. “ He was quiet, taking my verbal attack.
“I’m really sorry. I can’t take it back but I wish I could.” He sighed, “I don’t want to do it again but I can’t guarantee I won’t make another stupid mistake in the future.” He was so sincere. Life did suck without Jay. I leaned forward and kissed him gently and he let me.
“Okay, we can try again.” He smiled and kissed me again.
Meg cleared her throat to get our attention, “Hotdog anyone?”
.
“Hey Meg, I’ll let you both enjoy the night “ He stood and brushed off his jeans. “Soren’s gonna’ send a search party if I don’t get back soon.” Meg handed me my food and drink.
“Geez, I leave you alone for a few minutes and you reconnect with your man!”
“I know! I was shocked to see him. He said sorry for running away from me.”
“Well, I’m glad he was not too prideful that he couldn’t apologize - that’s a good guy there. I’m surprised you didn’t invite Jay and Soren to hang with us.”
“One word...Becca.” Meg’s mouth dropped open.
“Of course. Boy, Becca doesn’t waste anytime moving in for the kill. Too bad, I thought Soren was kinda cute.” That was the first I had ever heard Meg mention Soren and cute in the same sentence. Meg and I enjoyed our festival food and the last few bands. We ducked out early in the last set to avoid the crowds.
“Ugh, I need a shower,” I moaned. “And a soft bed and clean pjs.”
Meg laughed and added, “And water...lots of water. Thanks for going with me Brogen. Loved seeing my bands with my girl.” I smiled and patted her knee before exiting the car. I took out my keys and went in through the front. Mom must have already been asleep because the downstairs was dark. I took off my dirty sandals and headed to the kitchen for some serious rehydration. After 3 big cupfuls, I headed to the bathroom for a shower. I shoved my dirty clothes down the laundry shoot and turned the water as hot as it would go. And then I got in so the water could relax me and melt the day away.
Sunday was shopping day. Mom and I stocked up on groceries for the week and bought a few plants for the yard. After helping put away the food, I headed out back to put the plants in the ground. Mom began assembling ingredients for tonight’s dinner. I watered the new additions to our garden and threw away the empty containers. As I was storing the tools in the shed, I heard my phone chime.
-Brogen, this is Soren, Jay is in the hospital. Call me when you can.
My heart began to race. I clicked on Jay’s number. After several rings, Soren picked up.
“Brogen?”
I wanted to skip the intros…”Yeah, what’s going on? Is he ok?”
“We don’t know yet. He’s having terrible stomach pains. My mom is having a hard time convincing the nurses and doctors to check him for the VEDS stuff. They’re convinced it’s just bad gas or constipation….but I’ve never seen him like this. He’s throwing up and he’s pale.”
“Can I come up there?” I didn’t want to intrude on family stuff but I honestly wanted to be there for Jay.
“I think that’s fine. I’m actually going to swing by the house and pick up the paperwork we got from the genetics office. I can give you a ride.”
“Ok, thanks. See you in a few.” I hung up and then ran inside.
“Mom, Jay’s in the hospital. Soren is going to drive me there in a few minutes.” I bolted up the stairs to change clothes and grab a few items to shove in my backpack in case I was there awhile. Mom appeared at my door mid-packing.
“What happened?” She asked nervously.
“I don’t know yet. He is having terrible stomach pains, puking. They are trying to convince the hospital staff to see if it’s related to the VEDS stuff. They not listening and think it’s the other kind of EDS, the one that has lots of arthritis.” Mom rolled her eyes.
“He needs to get scanned for internal bleeding. Make sure they do that. And give Jay a hug from me,” I nodded. “I’ll try to get up there soon.” Soren beeped his horn and I gave my mom a quick kiss before bounding out the door.
In the car, Soren’s leg was bouncing a mile a minute. “Hey Brogen, ready?” I nodded. “My mom just called. They took Jay back into surgery. Something about a tear in his colon.” Soren loved Jay like a brother, there was so much concern in his voice. I was glad Jay had family that had not abandoned him when his life got complicated.
“Surgery? Jay said they only did that as a last resort, and many don’t survive surgery. What happened?” I couldn’t look at Soren, I was trying hard not to cry. I was so worried for Jay and if I looked his way, I knew the tears would fall.
“He woke up around six this morning and was in so much pain. We were trying different things at home in case it was just gas. But it seemed to be getting worse. Then he started puking, so we headed to the hospital.” All I could envision was Jay in the operating room, laying helpless with tubes coming out from all over. I tried to erase it with thoughts of us tossing rocks into the water and laughing that one afternoon..but the image of Jay on the operating table was stronger. I hadn’t realized we arrived at the hospital OR waiting room because I was so lost in my thoughts.
“Brogen, sweetie.” Soren’s mom ran up to me and hugged me. His dad just glanced up with a half smile to greet me. “I hate this stupid disorder.” She was crying, I could hear it in her voice and feel my shoulder growing wet. “He’s such a sweet kid, why does he have to endure all of this?” I felt a tear slip from my eye. Soren plopped down next to his dad and ran both hands through his hair in frustration.
“When will they be done?” I asked.
“They’ll let us know, but they expect 3 hours if there are no complications,” I nodded.
“Would you excuse me? I need just a moment.” I excused myself and headed to the bathroom. I didn’t actually have to use the bathroom, I just wanted some privacy. While in there I Googled VEDS and colon. Just a few pages came up. I clicked on the first one where it talked about hollow organs being fragile, colon’s tearing, people often not surviving surgery but those that did had to wear a colostomy bag. Now the tears were falling endlessly from my eyes. I could lose Jay. I may have missed my chance to say goodbye. I stood and headed back toward Soren and his family...but I never made it there. Instead I found myself in the hospital chapel. Strange, since I wasn’t even a church going person. It was beautiful with its warm, ornate wood and stained glass. Candles lit up the front of the chapel. I walked to the front and lit one. And then I said the first prayer I ever said in my life.
Dear God, I probably have no right coming to you now in my life. Honestly I don’t even know if you exist. But, if you do, and if miracles exist...one is needed. You see, there is an amazing human being who has gotten the short stick every single time. But he always finds a way to be happy about it and make everyone around him love life. He needs healing, he needs to make it through this. He deserves to live. Please, please help him. Amen.
I sat in the chapel and read more on VED
S. I had not looked into it since first talking to my mom. I was haunted by all the young faces of those who looked completely healthy and then suddenly died. They all looked related to Jay, big eyes, straight hair, shadows under the eyes. There was a link to a youtube video, “Coming Unglued”. I clicked the link with the volume off. It was the saddest four minutes of my life. I watched a man who was being treated for aneurysms in the hospital and was diagnosed with VEDS. His wife gave birth while he recovered from surgery and he got to meet his brand new son. A few weeks later the dad died and the newborn baby was diagnosed with VEDS. I felt the arms around me and I buried my head in the shoulder holding me while I let the sobs rack my body.
Chapter 19
Alot can happen in six hours. You can get married, buy a car, buy a house, fly to Cancun, have a baby, die… Jay and I were in the same building, near some of the same people - but our six hours were vastly different. Jay fought for his life, as much as an unconscious person can actually fight. But I believe his spirit, his inner strength was what warred on. I spent my six hours falling to pieces, grieving for Jay and the countless people who shared this disorder, and getting so angry at how unfair life felt. Meg had turned up in the chapel and found me at my lowest. She’s like a sister to me and she was there to support me when I needed her most.
“Your mom wants to head home once Jay is out of recovery. She’ll take me home and I’m gonna’ leave my car with you so you can come and go as you need.” I hugged her tight. Words were not enough for how much I loved her and how grateful I was. The three hour surgery had lasted far longer than anticipated. When the doctors tried to patch Jay, his tissues did not respond like a normal person’s. The surgeon came out and told us he was not sure what else to do for him. Jay’s tissues were like wet toilet paper - falling apart as they tried to stitch them together. Thank God Mom had showed up at the hospital. She insisted I join a support group through facebook. Instantly I was messaged by so many people from around the world that were dealing with VEDS or had a loved one with it. One woman had lost her son to it and she private messaged me a phone number to a scientist who had years of experience with Connective Tissue Disorders. The scientist’s name was Nazli. I called the number given and Nazli spoke with the surgeons and advised them on techniques and materials that have worked in past VEDS surgeries. This one woman’s advice helped save Jay’s life. For that I would forever be grateful.
“How are you doing kiddo?” My mom stepped away from Jay’s aunt to give me a hug.
“Emotionally fried. But relieved that he’s gonna’ be ok.”
“You should keep in touch with those people on that facebook page - seems like they are an incredible resource and an amazingly supportive group. Jay should join too.” I nodded. My phone was pinging like crazy from the facebook group members. They all wanted to hear the outcome, not to be nosey, but because another person surviving a traumatic event is another positive in their world.
“If Jay’s family is ok with it, I’d like to spend the night.” I informed Mom and she nodded. She knew it was a school night but staying by Jay’s side as he healed would do more for me than a day in classes. Soren and his dad came out of a set of double doors, followed by a gurnee carrying a sleepy looking Jay. The muscles in my face protested as I inverted the frown into a smile that spread across my face. He caught my eye and a little smile lit up his face.
“I’ll see you later pumpkin, be home by dinner tomorrow. And call me if you need me.” Mom kissed my cheek.
“I love you Mom.” I hugged her tight. Then I thanked Meg and hugged her as well. I wanted to let Jay’s family visit with him first so I asked the nurse at the nurse’s station where the soda machine was. She pointed down the hall and around the corner. I headed that direction and felt so much lighter knowing that Jay had made it through.
“Brogen! Wait - Jay is...demanding to see you.” Soren was smiling. I turned and headed back to the room. His aunt and uncle wore grateful smiles on their faces and Jay was propped up in bed. He smiled and motioned for me to come closer. I sat in a chair near his bed. He extended his palm for me to take and I wrapped my hand in his.
“We’ll give you two a few minutes, guess we can grab some cafeteria food,” his aunt said. “Be back in half an hour.” She kissed Jay on the head.
“Thanks Auntie. Love you.” She beamed at his words. As soon as they, left he turned toward me.
“Scary stuff huh?” I nodded, afraid that talking would bring on a new round of tears. “You don’t have to stick around, I mean, I’d understand if this was too much for you to deal with.” Now the tears were forming in my eyes. He looked away and let go of my hand. “Thanks for helping my family, for helping me. I’m so grateful.” Now he was looking down at his hands. I knew I needed to coax the words from my mouth but I was having trouble. I needed to say it the right way. But the words didn’t come, at least not right away. I gave up trying to make it right and just began spewing what was on my mind.
“I thought you were gonna’ die. I was so scared. It’s so messed up.” I looked at him and he was looking at me with watery eyes. I grabbed his hand and put my hand around his. “But that doesn’t change how I feel about you. You are the most beautiful and amazing person I have ever met. Even if you died tomorrow, I would be the luckiest girl for knowing you as long as I did. This VEDS stuff is scary - so scary. But...you’re not dying, you are not handicapped, you can run, jump, swim, go to movies, ride a ferris wheel, graduate from college... you still have a lot of living to do.” I paused and he was listening intently. “The scariest thing about all of this, is realizing how much I love you. How I want to laugh, cry, scream at the world with you - whatever each day brings, I want to live it with you in my life.” I unzipped my backpack and pulled out my journal. “My life has changed into something far more beautiful with you in it.”
“What’s this?” Jay picked up my journal and opened it to the first page. I explained how I would sketch after each day to release the pressure or energy.
“Look at the dates.” He had gotten to the part where the images had color.
“What changed here? Decided to use color suddenly?”
“I didn’t consciously choose to draw in color - that was the day things began to change in our relationship. I sit at the same desk with the same jar of pencils to pick from. You’ve changed something in me Jay - it’s all right here, proof that my life is better with you in it.” A tear fell down his face.
“You’re an amazing artist.” He pulled on my hand to tug me close. I thought he was going to kiss me, but instead he whispered against my cheek, “I love you too Brogen.” Then he kissed my cheek gently. There was a throat clearing coming from the doorway so we broke apart and looked up.
“My turn!” Soren said.
“What, you wantin’ a kiss too?” Jay puckered up and Soren laughed.
“Yeah, my lips are lonely now that I kicked Becca to the curb.”
I couldn’t help asking, “WHAT?! What happened?”
“She overheard me talking to my mom about Jay’s VEDS and blabbed it to one of her buddies. Turns out her buddy turned around and told me about it. She’s not a keeper. Sorry she spilled the beans man,” Soren said.
Jay returned,”Oh well.”
“Hey Brogen, mind slipping me Meg’s number before I leave tonight?” Jay and I both looked at each other, surprised to hear this.
“Sure. Listen, I’m gonna’ grab a soda and let you guys talk.” I kissed Jay on the head and stood to leave, I turned back and studied Jay for a long moment, “By the way, Jay? You look….” I paused pretending to be deep in thought and to make the moment more dramatic and nerve racking…”Nah, nevermind.” I smiled and walked away.
“Ugh!” Was all I heard as I exited the room and headed down the hall.
Epilogue
(Jay)
“Brogen, are you ready to go?” I finished tying my shoes, but this simple task seemed overwhelming. The last time I saw my dad was at our wedding. Br
ogen thought we should invite him, even though he had not been in my life since rehab. It was uncomfortable being around him and my nerves seem to get the best of me.
“I’m ready. Quit being so nervous - you know we won’t be alone with him.” Thankfully my aunt and uncle made an excuse to join us because they “hadn’t seen us in awhile.” It was a fib, they saw us every Sunday for dinner and sometimes during the week. They loved me as if I was their own child, and wanted to support me as I broke this news to my dad.
“You know, we could just send him an announcement.” I hoped she would see my humor and agree. Instead she leveled me with her gaze. This was important to her so I needed to man up. “You’re lucky I’m so smitten with you that you can manipulate me to do your bidding.” I had more of a backbone before Brogen - but love does funny things to you.
“I love you. Everything will be fine and nothing he says can change the outcome.” She kissed my cheek before grabbing her purse.