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Skip – Part 38
He continued to look at the ceiling.
"Please know that I will do anything to help you move forward. I would like you to forget what I did. I'm not asking to be forgiven, because it was cruel and thoughtless. Can I come after work? Or should I stay with you now? Mike would understand. I already told him I would be late."
Nothing. No further acknowledgement that I was even there. I sat down anyway. Lorial left us alone, for now. I touched his hand. I put my head on my left fist. I put my right thumb against his, and then took his hand in mine. I squeezed carefully so I would not hurt him.
He squeezed my hand back ever so slightly. I had to look at him in surprise. He was looking at me sideways with his eyes.
"Lorial!" I shouted.
She came quickly.
"He squeezed my hand just now. Not like I did his, but there's something there."
"Can you do it again, Skip?" she asked him.
He kept his eyes on me. He looked like he was trying.
"Are you?"
Affirmative.
He kept trying. Then he closed his eyes. When he opened them again, he looked sad.
"Spasm?" I asked Lorial.
"Possibly. Or a one shot that just needs a recharge."
I stood and looked at him. "Please?" I asked him.
Affirmative.
I leaned in to him and kissed his lips.
"Do you understand what we said? It could have been you squeezing my hand, or maybe a spasm, since you can't do it again just yet."
Affirmative.
"Do you know which one it was?"
Affirmative.
"You squeezed my hand?"
Negative.
Damn.
"Spasm."
Affirmative.
"Is it ... is it enough, love?"
He thought for a moment.
Affirmative.
"I want to hold on to you, sooo bad."
Eyebrow wiggle, meaning "Me too, Aaron."
Lorial left us again. I suspect it was not exactly center policy. If she did not see it, it did not happen. In that case, I owed her already.
I slid my hand under his back without lifting him up. I lay down beside him as best I could. I put my right hand on his cheek and kissed him deeply. I felt him, as much as was possible, kissing me back. I did not get hard. That would have been a bigger insult to him. Not that I could exactly control it, but I did not want an erection. I wanted only to hold him in my arms. I had not done so in over a month. I felt awkward, or guilty, that he could not hold me too.
"I'm so sorry, love. I was stupid."
Negative.
"I'm sorry anyway. I made you very sad."
Affirmative.
"I won't do that again. We look forward, not back. I know better. Do you feel sad, more than usual, like depressed?"
Affirmative.
"I guess it's to be expected. I can only say, from experience, it passes, but the feeling is so heavy."
Affirmative. Then his eyebrows wiggled. The eyebrow wiggle meant more than yes.
I kissed him again, as deeply as I had before, longer.
"Can I stay?"
He flicked his eyes to the door.
"She won't care. She's pretending not to know that I'm in bed with you."
After a moment ... affirmative.
"I love you, you know. I'm having trouble telling you why. I feel pity."
Negative ... or do not.
"I do. I can't help that, at least for now. You know I'm not going to lie to you, about anything, and especially how I feel. But right now, I do love you so much more than I pity you."
Affirmative. Okay.
Then he scowled twice, quickly.
"You have a headache still?"
Negative. He flicked his eyes at me.
"Yeah, love, I do. It's my own fault, but I did not sleep well last night.
He closed and then opened his eyes a bit quicker than if he was saying yes.
"Not sure what that means. A new word?"
Affirmative. Pause. Shorter than affirmative, but longer than a blink.
"You understand?"
Affirmative.
He made sad eyes.
"Me too, bro. Profoundly. I should call Mike. I'm not going to work today."
Negative.
"I don't want to leave you."
He flicked his eyes at the door.
"Are you mad again?"
Negative. He looked at the door, a bit longer this time, and then back to me.
"I should go to work?"
Affirmative. Lips in motion.
I kissed him again, as warmly as before. I really did not want to leave him. I also did not wish to blow away his wishes. What he wanted was more important than what I wanted.
He flicked his eyes to the door again.
"Okay, love. I understand. You need to rest. I'll come at 4:00."
Wiggly eyebrows.
"You'll look forward to that." It was not a question.
Affirmative.
I stood in the doorway, out of his line of vision. I had to know something. I watched him for a moment. He seemed to fold in on himself, the depression swallowing him in its black cloak. He lay and looked at the ceiling. If he could move, he would be fidgeting. He was totally helpless, unable to speak much, paralyzed, fully unable to move. As trapped as he felt, he would not let me stay. From his perspective, it was not that work was important to me; it is that he felt, strongly, that I needed a sense of normalcy, even if he did not have that. I wished that he did not feel that way, letting me do what I felt was right—staying with him. He is more important to me than work ever will be. And he needs me more than any perceived need that I have to be `normal'. I struggled with what was right. Perhaps there was no `right' answer, only the need to pay attention to his wishes. He, unlike me, is not selfish in any way.
He looked sideways and saw me still standing there. Do I honor his wish and go to work, to be `normal'? Or do I stay there with him and make my wishes more important? What to do? I could not just blow off his wishes. We continued to look at each other. He was inside of my head as usual. He knew that I was very torn with what to do. His wishes were not unimportant.
It seemed to be the struggle of a lifetime for me. I risked making him think that what he wanted was less meaningful than what I wanted. But I also am so selfish. I really wanted to stay. I put my back against the doorjamb, looking up, hugging myself, thinking it out.
I made my choice after deep consideration. I went over to him, leaned down, and kissed him.
"I'll see you this afternoon, love. I don't ..."
Understand.
"Okay. I love you."
"Love ... you. I'm ... okay."
I looked at him sadly. He was not okay in any way, except in his own way. Attitude is everything.
His wishes were far more important than mine were, and always be. That said, it did not mean I had to like it.
Understand, he said with his eyes. I kissed him one more time. I smiled at him, so he would know I could do as he wished. He winked weakly, but a wink nonetheless.
I honored my Skip by working through the day. I was sorely tempted to work a half day, or to leave an hour early. He would hate that. I was late when I arrived, so I worked 5 ½ hours instead of the usual 7 ½. Mike brought me a salad from the cafeteria when I begged off lunch. The fact that I did not have strict rules here made the decision harder. If I HAD to earn money from employment, or had a strict deadline on this project, I could work in (mostly) clear conscience. It came down to one thing—what Skip wanted.
As promised, I walked into his ICU room at 4:00. Okay, 3:55, but that's what I did any other time. My self-appointed workday was 7:00 to 3:30. I was a creature of habit. I was always at least five minutes early for any appointment.
I used those five minutes to say hi to Kelly. I did not ask how he was because it felt like talking behind his back. We just did chitchat about the day. She understood my reasons for not talking about him unless we were all in his room.
He looked at me when I walked in, giving me eyes that I could not yet interpret. Was he having seizures still, and perhaps did not recognize me? I walked over to him and looked down at him. I touched his cheek. He gave me wiggly eyebrows. Nice. Better than nice—so sweet. I did as he asked me to—I kissed him warmly.
"You okay, love?"
Affirmative.
Bored? Sad?
Half a Negative.
"A little sad."
Affirmative.
I sat on the edge of his bed, carefully. I had to realize, at every minute of the day, that he has a severe spinal injury. I did not actively think about it, but I could momentarily see the bus hitting his side of his truck. For me to make his injury worse, or to truly make it permanent, would be unforgivable, even in his eyes. He flicked his eyes down to his right side, eyes locked there for a moment, and then looking back at me. I looked out through the window to Kelly at her desk. I caught her eye. I motioned for her to come to the door.
"He would like me to lie beside him. I don't want to do that and make you mad at me."
She gave me a wink and a smile, and then walked away. Hmmm, another Lorial—what she did not see did not happen.
I again put my left arm under his back, reaching around to hold his shoulder. I put my right hand on his cheek and chin, kissed him sweetly and for a long time. I was forgiven for being stupid.
Negative!
"I'm not forgiven?"
Negative.
"But I was stupid."
Negative.
"If I made you mad or sad, it's stupidity, not on purpose."
One-half an affirmative—he understood. I continued to kiss him the same way we did when we made love. I would not hold back on kisses, even if those kisses reminded him of what was, because they were consistent and would be there for a long while to come.
"You love me."
Affirmative.
"I love you more."
A small scowl.
"Get used to it. I do. There is still an edge of pity, but more love than pity."
Understood.
"Or are you just trying to shut me up?"
Negative.
"Would you pity me if we were switched? Did you feel pity for me when I told you what this was like for me?"
Affirmative.
"Why?"
Wiggled eyebrows.
"Love."
Affirmative.
"Okay, bro. At least you understand me. We can feel, but we will not dwell."
Affirmative.
I held him and looked into his eyes. I could get lost in those eyes. I did, often. The last thing I saw lately, at bedtime, was his beautiful eyes.
Kelly came in after a while. She leaned down and kissed my cheek.
"You two. It's such an honor to see how you love each other. I feel like a voyeur. I can only imagine what it will be like when you talk to your lover, Skip."
Affirmative. "Soo—oon," he said, very weakly.
"Yes, love. Soon. I hope you talk our ears off."
Affirmative.
"Excellent!"
"Can I stay here?" I asked.
"I don't know. Can you?"
"Ugh, wise guy. MAY I stay here?"
"You may."
"What about your manager?"
"I'm the boss of this unit at night."
"Okay. Then I'm going to push my luck. I want to sleep with him tonight."
"Then you shall," she said.
I looked at Skip. He wiggled his eyebrows happily. Kelly laughed aloud and walked to the other side of his bed. She asked me to stand for a moment. She carefully pulled him, by the bottom sheet of his bed, a couple of inches to his left.
"Try that," she said.
I lay down beside him again.
"It was good enough before, but this is better."
"The rails go up when he is ready to sleep. It's a rule that I have to follow, but it'll also hold you securely as well."
"Thank you for this. Just wake me in the morning before you leave, so you won't get into trouble."
"Lorial already told me you were beside him the other day."
"Then I don't want to get her in trouble. Supervisors are here during the day, right?"
"Yes, but don't worry about it."
She left after kissing Skip on his forehead.
"Small victory. I have to hold you. I know it can't be every night, but I'll take the moment we're in."
"Love ... you." Blink. "So ... much."
"You the heartbeat in my chest. My blood, and my oxygen. I will love you every day, for all our lives. We've had the discussion of being a burden. How do you feel about that? Even if you can't walk again, will you ever think you are a burden to me?"
Negative. He did not even think about that answer.
"Because you believe that? Or because you know you'll walk again, somehow."
He could not answer two questions. He blinked.
"Because you believe that?"
Affirmative.
"Or because you know you'll walk again, somehow."
Negative.
"Like Billy being blind. He would not let partial blindness get to him."
Affirmative.
"You will never be a burden to me. It's a slam-dunk that there is a wheelchair in my future. Not so for you, but if there is, we will manage. Billy will care for us. And you and I will care for each other."
Affirmative.
"Always."
Affirmative.
"Shut up Aaron and kiss me."
Negative!
"Shut up Aaron."
Negative!
"Kiss me."
Eyebrow wiggle.
"I am so in love with you," I said, so he would know.
I kissed him and drew a little closer. He was not like fine China, but I could hurt him if, even for a second, I forgot.
"Can I hold you all night?"
Negative.
Aww crap. "Really?"
Negative.
"Okay, now I'm confused."
He rolled his eyes at me. I had to think. Oh, got it.
"MAY I hold you all night?"
Affirmative.
"Love me?"
He swept his eyes, slowly, from right to left. I think it meant Always.
"I will always love you too. You made sure I would love you, way back when. Any regrets?"
Affirmative, plus sad eyes.
I knew what he was saying. Not regrets for loving me, regrets that he was in this condition, even though he had no control over that. It was an accident.
Affirmative.
"You can still figure me out, can't you?"
"Love," he said slowly.
"I know. Don't live in regret, no matter the reason. It takes things away from you. I came into your life for a reason, and you into mine. And then Billy."
He watched me. He looked all over my face.
"Are you tired?"
Negative.
I continued to look into his eyes, touching his cheek, running my finger down his chin, kissing it lightly.
"I just realized something. Outside of Billy, I'm your first love."
Affirmative and happy eyebrows.
"Awww, sweet. Thanks for that. I don't think it matters that you are my second love."
Negative.
"I wish you could hold me."
Negative.
"Yeah, I know. Why wish for what you cannot have."
Affirmative.
"Soon enough?"
Affirmative.
"It will take a lot of work. Does it scare you?"
Affirmative.
"You'll do what it takes." Again, not a question.
Always.
"Nice. And so are you. You are very handsome, you know."
He moved his eyes down and left, as if to look at the scar on his face.
"That scar does not make you any less handsome."
He looked into my eyes, for truth.
"The truth IS in my eyes, love. You know the rule of lying, and of insincerity."
Affirmative.
"The scar shows that you suffered, badly."
"Yooo ... rs," he said, looking at my neck.
I shrugged.
He kept looking at my neck, and then to my eyes, and then to my neck again. I took my shirt off. He looked sadly at the now shiny wide scar that cut from my neck to below my collarbone, on the left side. He could not touch it, as he had in the past. He gave me sad eyes.
"Like yours will be, in time, just an imperfection on my skin. I know it's there, and I can be very sad about why, but it's past."
He closed his eyes for a moment, opened them briefly, and closed them again.
"Time to sleep?"
Affirmative.
I snuggled up closer beside him, kissed him, and tucked into his neck. It took him very little time to fall asleep. I lay in the semi-darkness for a while, listening to his respirator breath for him. It would not keep me awake, any more than it kept him awake. It was life, therefore it was good, and comforting. The rhythm of it put me to sleep. I woke briefly when Kelly came in to raise the rails on each side of the bed. She kissed Skip on his forehead. She came back around and kissed me on my cheek.
"So sweet," she said in a whisper.
Mike and Amanda came to visit on Wednesday evening, knowing that I was with Skip. They had something to ask him. The couple stood on one side of Skip. Mike looked down and ran his fingertips across Skip's forehead, as one would brush hair away from another's eyes.
"It does make sense that you feel depressed. We are going to help Aaron help you as much as possible. Your alone time is very hard?"
Affirmative.
"And you're without Aaron all day every Friday. May I come to be your partner on Friday's, when Aaron is with Andrew?" he asked.
Affirmative and something new—bright eyes.
Bright eyes mean `Thank you'. It was the newest word in Eyes. It was the next best thing to a classic Skip smile.
"Or Amanda, if I can't?"
Affirmative, and bright eyes again, for Amanda.
"Thank you, Skip. Maybe we can alternate Fridays. We both want to help you make progress when Aaron cannot be here. Would that be alright with you?"
Affirmative and bright eyes.
"I will be here on Friday then," said Amanda, smiling widely. "Rest now, okay?"
Affirmative.
Both Skip's ICU nurses told me that he was practicing facial movements on his own. But the depression was deep. I could not stay with him again all night to help him. He really did have to be still so he would heal. I often felt guilty that I slept. Patricia had already asked me what good I would be to Skip if I were always tired. I too was lonely, but I had nothing to complain about. Not one minute of this was about me. I could do all that Skip could not, so my right to be sad was limited.
He could not eat, so he had a percutaneous endoscopic gastrostomy tube (PEG tube) that had been inserted at Yale-New Haven. He was getting nutrition, but it was not necessarily a way to maintain weight. His cheeks were hollow. I noticed the first time that I gave him a sponge bath that he was slimmer than his usual. It would change in time, of course, as he healed.
I met his therapy team on Thursday. Deb was young, under 30, blonde with an ever-present ponytail. She has a warm and engaging personality. Mark was a bit older, perhaps 32 or 33, sandy brown hair, bright eyed, and friendly. His look said `people person'.
"You're Skip's partner, Aaron?" asked Mark.
I nodded a bit shyly. Oh boy, how was this little scene going to go? I put my hands in my pockets so he would not see them shaking.
"Now take that worried look off your face," Mark said. "Deb and I both, if I may brag, have hearts for the world. It's why we're here. Skip needs us and he will have our full attention. We will teach you how to care for him. You do understand that we are not curing him here?"
"Yes. I do. He does, as well."
"At the same time, we will give him as grand a start as he can have. For you to carry on our work at home only honors Deb and me more, so we will want updates once in a while from you two."
"Thanks guys. Really. One less thing to have to be afraid of."
"Don't fear people, Aaron," said Deb. "More people have a fine heart than don't."
"And especially don't be fearful that Skip's care will be second-class. It will not," said Mark.
"We'll start on Monday morning," said Deb. "Can you come for the first two hours?"
"Yeah, no problem. I have a project to work on for the GE Atlanta office, but it's flexible."
"So you don't have to take a leave of absence from the home office," said Deb. "Nice. My dad works for GE in Science and Technology."
"Same division as me."
"I'll get you two connected at some point. You'll like him. I raised him right," she joked.
Mark rubbed my back as he stood beside me. He was seeing all my concerns drain from me. It was easy to give my fears up. He was right about me worrying about Skip's status, or orientation, whatever. Skip would not be the only gay-by-stupid-label man treated as second class, but it was unbearable to think about that when he was so broken.
"We do care, Aaron, about family as well as our patient. Skip's depression with lighten too. He'll be put through a lot, physically."
"He's ready. Do you guys have Kelly's notes on Eyes?"
Deb pulled out a piece of paper. I looked at it.
Add `bright eyes' to your list. It's new. It's his way of saying `Thank you'. And another. You know how he says `yes'?"
"Yeah, opening and closing his eyes," said Mark.
"If he does it a bit faster, it means he understands."
"Sweet," said Mark.
"Truly," said Deb. "When the trach tube comes out, we'll also help him verbalize. It's excellent to have Eyes to communicate though."
I went back to Skip in ICU. I told him my feelings about Deb and Mark. They had already introduced themselves. He listened with interest, eager to get started. He knew this was not going to be a few sessions over a couple of weeks. This was going to be months of very intensive physical and occupational therapy, and speech therapy if necessary. As feeling returned, it would sometimes be painful, a burning kind of pain. Eventually it would turn to a constant soreness within his bones. I did not know if he would have pain meds.
Friday—chemo day. I got on the bus at the entrance to my development and headed toward the Atlanta Medical Center downtown. From the bus, I transferred to MARTA's Red Line near the Lenox Center mall. From Five Points downtown, I transferred to another bus. It took about 45 minutes in all, but driving in the heart of Atlanta was not something I felt a need to do.
Andrew and Seth were in the lobby waiting for me as usual. This was my second chemo session in Atlanta. Boston, Washington (Maryland), New York, and now Atlanta. No escaping the cancer, no matter where I ran, or for what reason. The cancer did not care that I wanted my full attention on Skip.
Once upstairs, we walked down a long hallway. There were no patient rooms on this floor, just labs and office space.
"I have a surprise for you," said Andrew. "One tumor is half the size that it was."
"Rah!" I said, showing the same enthusiasm Billy does.
"And?" said Seth, smiling, knowing more good news was ahead.
Andrew smiled in the same manner.
"And, another tumor is completely gone. No lesion at all, even at very high magnification."
"RAH!"
I hugged both of them. I knew that Seth was doing more than making an anti-emetic. He and Andrew had been putting their heads together on a way to defeat the tumors, and preventing future growth. Andrew's biggest contribution to science was studying how my accident had caused the tumors. His biggest contribution to me was killing the tumors for good. Andrew had 90% of the answer. Seth provided the other 10% by playing `what if' in the lab.
"Onward," said Andrew. "We can't relax for a moment."
I lay down and the padded table and Andrew did his thing with the needles. I hated this as much as ever because the pain of it was sooo hard. I had to take myself away from it, as I had been doing for a long while.
I walked into the world outside. "Come walk with me Vincent. I have not been paying much attention to you. I'm sorry for that. You feel that Skip needs my total attention, but I do not. Skip has the attention of others, even when I am not there. I love you very much, my friend. I can love you and still give to Skip everything he needs." We walked through the development where I lived. I took him out the front door of my apartment and went left. There were seven streets within the large development. The trees that put off that sweet fragrance that I loved were all over the place. The breeze carried the scent to our noses. At this time of day, the neighborhood was quiet. UPS and FedEx came into the neighborhood around 11:00 a.m., so they were not here yet. Young children played at the large playground with their moms or babysitters. We stepped onto the walking trail that went around the outer perimeter of the development. Butterflies flew around us, birds sang for two former but yet not so former lovers. Again I felt so glad that we had made sweet love, and that his seed remained within me. I kept wishing to be able to make love to him again, one more time. `One more time' is so hard to deal with. He knew I loved him deeply, but one more time would have just added to that experience. I felt so sad. Then I felt a light touch on my face. I looked up, in time to see a rainbow in a low part of the sky. I smiled. "Yes bro, I do see you. Not just there. I see you in everything that is important, but for now, especially in that rainbow. Thank you for that. I truly love you and miss you badly. Say hi to Kate for me, huh? I will talk to her later."
"Okay love, let's start phase two. I'm going to bring your chemo down to an hour and a half. I want you to be stronger so you continue to fight the tumors."
"No argument from me. I need a pee break first. And an aspirin."
After both, I lay down on the sofa. Andrew hooked up my PICC line and then left me to sleep.
Skip was lying down, on his back, on the low and wide padded exercise table. Amanda sat to his right, carefully working the fingers on his right hand, as she was being instructed to do by Mark. If he felt any pain, he was to speak up. His eyes were focused on Amanda's hands and his fingers. He willed them to move on their own. He tried to move the fingers on his left hand, and then his toes. Nothing. But he was not frustrated—he was merely trying to find out what he was capable of. Patience and what happened over the next few months mattered, not this moment. It was the only exception to our `live in our moments' rule. Amanda watched his face. He looked up at her. He smiled just enough so that she knew he was okay. There will be small victories, just not today.
I fell deeper into sleep, losing the visions of my love and his helpers. I woke when I felt Andrew kiss my forehead.
"All done, love. Let's get you home."
Since home was closer than it was between Fairfield and New York City, Andrew thought it best to take care of me at my apartment. Seth had already left for Hartsfield Airport for his return trip to New York. His work, for now, was done. He had another patient to take care of, having shared a success with Andrew in my care. I will see him again in New York, once Skip and I go home.
We walked to the hospital's parking garage. The nine mile drive took just over 20 minutes in light pre-rush hour traffic.
Andrew sat at the kitchen table while I made him a grilled cheese sandwich. To give it a bit of umpf, I added a slice of bacon and a tomato slice. It was too heavy for me, so I took a container of blueberry yogurt out of the fridge.
"I know what Billy means about not wanting to eat better than you. I feel a bit guilty."
"Nah. I just know my limits on chemo day. I'll make a decent fruit plate for us for dinner, one that I learned from Amanda. I'll be a bit hungrier at dinner."
A while later, we went out to the pool. Andrew had remembered to pack swim trunks in his overnight bag. He swam laps while I stretched my lower back muscles using the water for resistance. The numbness and tingling in my legs got some relief. The team at Shepherd would show me how to extend that relief to drop pain levels by half. They had a program for Multiple Sclerosis patients, though not specifically for Muscular Dystrophy/Charcot-Marie-Tooth patients. Any relief was good relief, considering I was not a paying customer of the center. I liked, a lot, that Deb and Mark had considered my ability to care for Skip after we returned home. It gave `above and beyond' a new meaning to me.
Andrew and I sat in the sun for about twenty minutes, took another swim, and then went to walk around the development on the same paths that I had taken Vincent on earlier. The sweet scent of the trees and the butterflies were with us. The only thing that was missing was the rainbow. Andrew could not perform that type of magic for me. He had performed his own brand of magic, so I had not need to forgive him for falling short. He did not fall short, and my life is a true testament to his love and caring for me.
Instead of me sleeping in the master and Andrew sleeping in one of the spare bedrooms, we both slept in a spare bedroom with twin beds. He still needed to make sure I made it through the night in one piece. For that, I was thankful, especially at 4:30 in the morning when I found myself puking mightily into the toilet. I woke up, gagging on my own vomit. Andrew scooped me out of bed, took me the ten feet to the bathroom, and held my head for the next few minutes. When I was done, he cleaned me up. I had thrown up on him as well. Damn. He went downstairs, returning a few minutes later with ice wrapped up in a washcloth. He put it against the base of my head. He washed up in the bathroom and then put on clean boxer briefs and a t-shirt. I went back to sleep after a few minutes.
"Well, despite the puking early this morning, that was a new personal best in the war against the nausea," I said to Andrew. "Sixteen plus hours is awesome. And, truthfully, I don't feel too bad this morning. Headache, but I have a headache no matter what after chemo."
We spent the morning doing nothing more than hanging out and enjoying each other's company. Because he would be back next week, we were not sad in parting. He drove to Hartsfield for his return flight to DC. Once home, we sent me an email. He wanted me to tell Skip that he would visit him on a future trip, but that, for now, Skip should do his healing with little distraction from others. That is also why our boys had not come yet. I had emails to share with Skip each day, so he knew the boys were praying for him.
I had Saturday dinner with Amanda and Mike, and the boys. The little guys made my heart all weepy. They loved that I was a kid like them, even if I was bigger. We played in the pool for a while before dinner. I floated on an inner tube while the boys floated on their duck and dragon. They held on to the inner tube with one hand apiece while I navigated us around the pool. We all had floppy hats on so we would not become sunburned. The Atlanta sun was a lot hotter than the New England sun that I was used to.
My place at the dinner table was between the twins. Dylan teased me with a French fry. He held it out to me. I leaned in to take it with my teeth. He pulled it away at the last second and ate it, giggling happily.
"Bad!" said David. He gave me a fry. I had to laugh.
I helped to put them to bed, as it got dark. They did not fight momma at bedtime, something I always did. Being little and having to go to bed before dark seemed wrong. Eventually I learned to keep a picture book nearby until it got dark. Then I could go to sleep. To this day, I still have to read at bedtime. Otherwise, my mind just runs on and on, working on the world's problems.
We sat on the back deck and had tea, listening to the evening symphony that I loved so well. I joked that I could hear the southern accent in the bullfrogs but not the crickets.
Mike found me in the office on Saturday morning, knowing that I was making up for a couple lost hours during the week. I heard "Awon?" coming from the corridor outside of my work area. I got up to take a peek.
"Bus sed!" said David, obviously prompted by Mike, meaning `busted'.
"Bad!" said Dylan.
"Okay guys, okay. Yes, I am bad. Am I grounded?"
The boys shook their heads. Phew. I hate being grounded!
"No, but we'd like you to come to Stone Mountain Park for a picnic. Amanda packed a lunch. You have two choices: come with us, or come with us."
"Oh hungry. Starving. Need fooooood," I said, walking like Frankenstein.
The boys clapped and giggled.
"Yeah. Good choice."
We left my car in the company parking lot. I rode in back with the boys, keeping them entertained on the drive. Stone Mountain Park was awesome. The centerpiece of the park was a giant granite mountain into which was carved three leaders of the Confederacy; Jefferson David, Robert E. Lee, and Stonewall Jackson. The carving was at least two football fields in size, likely more. We ate lunch in a shady spot, surrounded by other families. After lunch, we took a ride on the railroad, on a five-mile route around the base of the mountain, through the woods. We walked a bit after that, down to the water where we took a ride on an authentic riverboat on Stone Mountain Lake.
We could hear bells coming from somewhere along the shoreline. It sounded like a dozen churches, ringing their bells in a beautiful melody. Since the folks had been here before, they showed me the source of the music. It came from a 732-bell carillon, an impressive structure that reminded me of a fountain pen standing on its end. We sat on benches and listened to the summer concert.
We stayed into the evening, past the boys' bedtime. Dylan snuggled up against my neck, his arms on my shoulders, his little bum tucked into the crook of my arm.
"You would have made a very fine dad, Aaron. You're so gentle. The boys say, "Where's Awon?" during the week."
We picked out the constellations that we could identify. My favorite one, Orion, could not be seen at this time of year, at least not in its full glory. The last time I remember looking at it, more than just a glance, was on Skip's and my trip to Nova Scotia and PEI.
I arrived at the center at 7:00 a.m. on Monday, dressed in a t-shirt and shorts as requested. We were not starting until 8:00, but I wanted a bit of quiet time with Skip to see how he felt. In a word (or in an Eye) Excited. He moved his eyes back and forth to show excitement. I had to laugh. Ten days of more healing and waiting, and hating it, had gotten on his nerves, so he was ready. I leaned down to kiss him softly. I rubbed my nose against his, reminding me of the twins, and their affection for me.
His bed, which was as adjustable as a stretcher, was rolled out of ICU and into the SCIU (Spinal Cord Injury Unit) Therapy Gym, and over to the low padded exercise table. Mark, Deb, and I gently lifted him off his bed and lay him down on the table. His vital signs had already been taken by Lorial that morning. All were normal, or near normal.
Mark sat beside me, to my left. I was on Skip's right. Deb was kneeling at Skip's head.
"Skip," said Mark. "How do you feel about the beginning of this long journey?"
He moved his eyes from side to side. I did not need to translate. Deb and Mark laughed aloud, heartily.
"Excited, huh? Excellent. Now, understand that we are not going to hurt you. If you feel any pain, tell us."
Understood.
"Okay," said Deb. "I'm going to start by rolling your head to the left and then back to the center. If it feels okay, or even if you still feel nothing, I'll roll it to the right."
Understood.
She slowly rolled his head all the way to the left.
"Can he flinch if he feels pain?" I asked.
"I don't think so. Practiced hands are the only way to tell, and his expression-filled eyes."
"It was okay?" I asked, like a nervous parent.
Affirmative.
Deb rolled his head all the way to the right, slowly. He made a face right at the end. I winced.
"Sorry, love. That's just a test of your range of motion. I bet you felt an uncomfortable pulling in your neck and shoulder."
Affirmative.
"Was it okay at the half way point?"
A small scowl. He did not understand, because he did not know where `half way' was.
"Sorry. Let's do a slow roll again. I'll stop when I'm half way."
Affirmative.
She rolled his head, gently as before. "Okay there?"
Affirmative.
"Good. I won't go further. Half way, considering all the injuries on your left side, is quite good. Can you feel Aaron holding your hand?"
He made two Eyes words. No and yes.
Deb looked at me. "No, not physically," I said. "Yes, just because he knows."
Affirmative.
"I'm so jealous of you two. I love my husband a lot, but you two just rock me."
"Same for me, guys," said Mark. "I'm going home today and I will show my wife that I love her. Words don't cut it anymore, not after seeing you two."
Bright eyes. (Thank you, and more).
Deb got up off her knees and sat on Skip's left, on the opposite side as me. Mark got down where Deb had been.
"Okay guys, we're going to see how far Skip can sit up. It's going to be slow, Skip, so your hips have time to settle. Again, any pain at all and we'll stop."
"If you're okay, love, give me Yes Eyes. If it hurts, No Eyes means we stop."
Understood.
"First," said Deb, "I'm going to see if you can move your left arm at the shoulder. I want to be able to lift it a bit in a little while, but I have to test the arm first."
Understood.
She put his hand on top of hers, palm-to-palm, and slowly began to raise it. At the halfway point, he closed his eyes. Pain. She stopped immediately and lowered his arm a couple of inches.
"Okay, so I can lift it a bit. I will hold your back as I pull you up. Aaron will raise your right arm (which has no injury) and hold your back. Mark is going to raise you at the shoulders."
Understood.
She and I scooted closer to Skip. Mark put both his hands on Skip's shoulder blades. He nodded. Deb and I very carefully began to pull Skip upright. Skip watched us. Deb and I watched his eyes very carefully for any signs of pain. At the halfway point, he seemed okay.
Affirmative.
We kept going, as carefully as before. Deb, Mark, and I looked at each other. Skip was sitting fully upright.
"Anything?" Deb asked. "Pain? Discomfort?"
Negative.
"Good, but we won't push our luck. We're going to lay you back down. We'll do this again later. That you can sit up is great. How long you can sit up is the next question."
Understood.
Mark spoke next. "Aaron, let's see how far Skip can raise his right arm. Now, a few inches at a time, slowly. Actually, first, flex his wrist."
I was still holding his right hand in mine. I flexed my own wrist first to get an idea of what I should see in him.
Deb smiled at me. "Good job, Aaron. Skip's wrist should be able to move the same distance."
She and Mark showed me theirs as well.
I raised his arm a bit, and then I raised his hand gently, a bit at a time. No injury, so it might be fine. I again watched his eyes. At around 45 degrees I stopped. He gave me affirmative Eyes. I moved his hand up a bit more, to match what I had done in mine. He was okay. I released it and let his hand fall back into mine. I waited a moment until he was ready. I raised his arm a bit at a time, given him time to feel discomfort but not pain, I hoped. I stopped when I reached halfway, his arm straight up. When I continued, his shoulder would begin to rotate, so I watched carefully. I kept going. Finally, I stopped. His right arm could be raised fully, up to the side of his head. I brought it back, all the way, so that it lay beside him again.
"Excellent job, Aaron," said Deb. "You'd make a great therapist."
"Been there / done that, on Skip's end at least. I've got three years of up close and personal experience."
"I keep forgetting," said Mark. "Even without that experience, I think your instincts are right on. You proved that when you flexed your own wrist first."
"Instinct not to cause pain is more like it. He's been hurt more ..." my voice broke. "... than enough," I said, looking at my love and buddy.
"Skip, are you okay?" asked Mark.
Affirmative.
"Tired?"
Negative.
"I'd like to test your right knee, leg, and foot next. We won't do much with your left leg. The bones and muscles need extensive healing."
Affirmative.
"Aaron? Ready for more?"
"You bet. How about I start with his knee. We sorta already know that his leg can stand being flexed, because of him sitting up."
"You're right. Well done, bro," said Mark.
I put one hand on top of Skip's thigh and one on his calf. I lifted his leg up a big and then bent it at the knee, carefully. He scowled a bit.
"Hurts?"
Affirmative.
"Leg?"
Negative.
"Knee."
Affirmative.
"Tender?" I asked Deb.
"Very likely. Good to know, so we'll work it a bit at a time."
"May I raise you leg now, bud?"
Affirmative.
I raised it slowly but steadily. No scowling. He watched his leg and me with interest. He wiggled his eyebrows. I laughed aloud, knowing that a raised leg was one thing we did before entering each other. I was so glad for that little moment of comedy. Even in depression, the heart of my bud is in there. I would ponder our sexual activity another time.
"Care to explain that little eye movement?" asked Deb.
"Nope. I do not."
"Y'all keeping secrets?"
"Yes. Yes we are," I said as I flexed Skip's foot at his ankle, paying attention to his face.
"Don't make a habit of that," she said lightly.
"No promises," I said without thinking.
She and Mark laughed. "Ve haf vays," he said.
"Short of a tickle torture, nope."
"Okay, now a bit of a test of your left leg, Skip. It might hurt but we need to know the range of motion."
Affirmative.
Deb raised his leg slowly. She got to about 45 degrees before he scowled. She stopped immediately.
"Good job, Skip," she said, lowering his leg carefully. No surprises. Tomorrow we do it all again."
"Well, one surprise, a happy one, said Mark. "You've graduated out of ICU. Kelly and Lorial will still be your nurses, but in a room with a view. Not of a mountain lake or such, but a window at any rate."
He moved his eyes side to side, quiet happy.
"Awright! Sweet. How about sitting up. I know 100% that he's sick of being on his back all day."
Affirmative.
Mark addressed Skip.
"The girls will start you in the sitting position, probably 45 degrees, at the beginning of their shifts. They will check with you every hour or couple of hours to see if you're comfortable. And something new, for being such an outstanding patient, a television with eye controls. We'll explain once we get you into your room. I'm going to see if it's ready for you yet."
"Psyched?" I asked Skip.
Excited.
I smiled and leaned in to kiss him, without thinking. At the last moment, I kissed his forehead instead of his lips.
"Uh hum," said Deb.
I pointed my index finger down and twirled it, indicating for her to turn her head. She did so. I leaned in to kiss Skip properly. I rubbed his nose with my nose and smiled at him.
"For your information, wise guy, woman like seeing men kiss. It's very hot. In your case, it's very sweet, so don't deprive me again."
"But I'll blush."
"Get over it."
I laughed. I decided to see if I could make her blush. I moved closer to Skip and gave him a very warm hug and a deep, passionate kiss. When I was done, before I pulled fully away from him, I looked over at her.
"Mah mah Miss Daisy, Ah need my cooling down fan," she mocked, like Scarlett O'Hara being prim. "You do know how to make a proper girl blush."
"Get over it," I joked.
We laughed together. It felt so good. I would have paid money for this feeling a week ago, even if it lasted only a moment. Ten days of my love's depression was winding down. A room with a view, being able to sit up, the start of his long physical therapy, and a staff who was professional and down to Earth at the same time.
"How about the respirator?" I asked.
"We'll wean him off a bit at a time. He'll need it at night for a while, but Lorial and Kelly will see how he does with breathing on his own during the day. His off time will increase little by little. It's a slow process, but you can be patient, right Skip?"
Affirmative. Excited.
Mark came back. "Okay, bro, your presidential suite waits."
He, Deb, and I moved Skip back onto his bed carefully. They wheeled him out of the therapy gym, past the ICU station, and around the building, to room 418. Nope, no mountain lake, but a window with sunshine and blue sky. Skip was very pleased.
They backed the head up his bed up against the wall. Mark raised the head of his bed.
"Say when."
After it was up enough, he blinked.
Mark took the time to explain about the TV. A simple blink, with an electronic device beside his ear and eye, would allow Skip to change channels forward or backward. Two rapid blinks reversed directions. One blink maintained that direction. He had a movie channel as well, which made him happy. Skip caught my eye and gave me a `get lost' motion with his eyes, toward the door.
"Good try, bozo, but there's a chair with my name on it right here. That means I can stay."
I showed him the piece of paper with my name on it. It had been taped to the chair.
"See?
He rolled his eyes.
"But I do have to go to work. They miss me, badly," I joked.
Affirmative.
"See you after 4:00, love. It's been a good morning."
I leaned in to kiss him. I did not blush in front of Deb and Mark. But I did go to work. When I got there, I checked my voicemail.
"Love ... you ... A" is what I heard when I played it back.
One of the staff must have worked out that he wanted to call me. I would have to remember to thank them all. I noted the time on the message. It was 15 minutes after I had left him. Awww, so sweet. My boy loves me, and I loved him more in that moment than ever. He was strong and bound to succeed. That did not mean he would walk again, but it did mean that he was going to put his heart into it.
I sat with Mike for a short while and told him about the morning. He too was pleased. He would see for himself on Friday, in my absence.
"Aaron, do you have Muscular Dystrophy, or similar?"
Deb asked me this around midweek, a few days after she began working with Skip.
"Um, yeah. CMT actually. Diagnosed a couple years ago. I had a bad enough attack to be in a wheelchair for a few weeks."
"Your gait and also how you sit gave me a clue. Your left ankle is also fully on the floor, which tells me your ligaments are hosed. You are in pain." It was not a question.
"Only sometimes."
"Today is one of those days. I will give you some pain management techniques and flexes, if that's okay. You know about the pool upstairs?"
"Very okay. Yes, I know there's a pool. I also have two at my development, indoor and outdoor."
"Mark and I can help you get some relief. Keep a pair of swim trunks here and we'll help you in the pool. Some of these sessions will be intensive. You'll be lifting Skip at various times, so we don't want you to be in pain when you help him. Caring for him at home, I know, is really important to you."
"GE will pay for anything, if you need to do billing."
"We won't. Helping you helps Skip, so it's all good."
I was amazed yet again. I felt like crying but I did not. However, I did not speak either.
"We do care, Aaron. Everyone who comes through here is special in his or her own right, and that includes family. I already know I'll miss you terribly once Skip can go home."
When I got home that evening, a package sat on my front steps. It had Billy's return address on it, at Patricia and Fred's house. Wow, Christmas in June. I took it inside and set it on the living room floor. I got scissors out of the kitchen drawer and cut the packing tape. I smiled widely. Inside were t-shirts, sweatshirts, shorts (regular and long), and socks, all with the BC colors and logo. There was a new pair of Adidas sneakers, one size larger than Skip's usual, as recommended by Shepherd, for orthotics. He will be thrilled.
The mail brought a lot of encouragement. Every boy at BC had sent messages to Skip and me. The Boston crew—Tony and the basketball team (all of them, after a reconciliation by two of Tony's buddies), Jillian & Jimmy, Jimmy & Marissa, Edward & Kathryn, Nate & Bryan. Jordan too, my police officer friend. Every one of them told both of us to be strong. The messages should have been for Skip only, but they were not. I felt selfish that it would take away from Skip.
There was one thing that did not take away from Skip, or me for that matter—the photo taken the day we had left New Haven airport for Atlanta. It was in a large mailing tube, blown up to 4' by 4' size. Wow! The whole bon voyage crew and the banner. I showed it to him. His eyes smiled. He looked at the picture and then at me. I smiled. He looked at the picture again and then at me. I finally got what he was saying. I leaned in to kiss him warmly. His eyes said he was pleased. They were also a bit misty.
"Fail?" asked Skip, his first word in over three weeks.
"What does he mean by that?" asked Deb.
"I dunno exactly. Tell me more, bud," I said.
He looked down at his legs and then flicked his eyes over a Deb. He did it again twice more.
"He wants to know what you believe his prognosis is," I said. "Answer him truthfully, please."
Affirmative.
"My professional and personal opinions are different, Skip."
He waited. He knew, as did I.
"Clinically, it's doubtful that you will walk again."
He blinked, which meant that she had more to say, the same as it meant for him.
"Personally I believe that nothing is forever. I've seen patients work very hard, despite a grim diagnosis. It's not an exact science, to me anyway."
He smiled slightly. He made a very slight kissing motion with his lips.
"Did you understand that?"
"Yes," she said confidently. "He needs me to set up a challenge for him."
"Before you say anything, I think she's right. You need to be told that you will never walk again, so that you have a goal to do it anyway. It's not that you agree or disagree. As Deb said, a challenge."
He wiggled his eyes. Deb smiled. I gave her a hug because Skip could not. She gave Skip a hug in return. She gave him her cheek and he kissed it. Deb understood. She is what an angel in human form looks like.
Later in the evening, as I lay reading more of "Harry Potter and the Sorcerer's Stone," something nagging hit me. My head ached a bit. I had eaten a light dinner, but perhaps too light. A headache for me was from two sources only—not eating right and not sleeping well. It was not enough of a pain to get out of bed and take an aspirin for, just something at the base of my head.
Ow! Damn! I felt a pain in my head and then I heard a sound within my sleep. What was it? Alarm clock? I came into half consciousness, but saw that it was quite dark. Too early for the alarm. What? ... PHONE! I grabbed my cell phone, waking more. The bedside clock read 2:17 a.m.
"Aaron. It's Kelly at Shepherd. Can you come? Skip had a seizure that turned out to be an aneurysm."
My mind and body went into full alert mode. "Yeah. I'm on my way."
I pulled my jeans on over my boxer briefs, pulled my sneakers on quickly, grabbed a shirt and put it on clumsily, and shoved my cell phone into my pocket. I hit less than every step on my way going down stairs. I grabbed my car keys off the table beside the door and ran into the parking lot. I did not think to lock my door. (I would not realize that until I came home much later). I sped off into the night. I felt fear and rage at the same time—scared enough that I had wet my pants.
Comments: ajlangille [at] gmail [dot] com
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