April 17th 2003
I have spent two nights in “the home.” And I really need to go my home, now. I don’t know what there is for me at my home, other than Lola and Ciro and Zoebug. But I know that my home is better than this home at night. Nights here are right out of a horror movie, for me. And I never watch horror movies. It is dark and too quiet one moment. And cold, there is a bitter draft from my windows, even with the brown drapes pulled tight. ( My warm hospital had soft voices and dim light at night that made me feel safe. ) Here, the eerie lifeless silence gives way the next moment to wailing cries. I don’t know who moans or why. I am ok as long as every scary thought I have, every pain, every “why me?”, every minute by minute terror waiting for the next stroke, and every single “I can’t handle this!” stays inside my head. But in the home at night, all those sounds come out into the dark. And everything that is holding me together, unravels.
I’m sorry. But I can’t take it.
The days are bearable. Each morning, I leave my room early, after taking care of my meds and a 200cc flush of fluids. (I never thought of drinking water to stay hydrated before. I just did it. Now I have make sure I push the fluids into my tube 2x daily. ) I disconnect from the machines and head down the corridor, past the nurse station and out onto the roof top terrace. The latch to open the door is right at my eye level. (I am glad it is not above my head. I am so afraid to tip my head back. The doctors say that my artery is beginning to heal a bit. They say not to do things like painting a ceiling when I get home. It is not good to tip my head that much. And I hear that and so I don’t want to tip my head at all. I look up at things with my eyes now. My head doesn’t have to move. Please don’t let the next stroke come when I am alone on the terrace. It needs to happen when I am at my hospital, not here. )
Most residents that I have seen are in wheel chairs or need two hands on a walker to move. But I can press the door release and go out whenever I want. What I call a terrace, is really a rooftop covered in concrete or something. There is a bench and a few potted big plants that aren’t very lively this early in the spring. And I can’t get to the edge of the terrace. There are railings that keep me back. But the sky is open to me. The air is free. There are distinct smells at each time of the day, even this early in the season. There are things alive, even in the cold. The breeze carries tree smells, slushy smells, kitchen smells, and even exhaust smells from vehicles or vents are interesting to me. I take a big breath and try to blow the night before out of my system and replace it with life.
After a time outside, I have 8:30am DPNS with Abby in my room. The second session of the day is at 1:30pm. It takes about 45minutes. We face the two big chairs in my room to each other. Abby pulls a small table over. On the table she puts a big bowl. The bowl is filled with ice and about 100 swabs. Picture a Q-tip and make it about twenty times bigger. The cottony end is soaked in something like lemonade and it is frozen. I sit with my face near hers. I say “awwww” and she uses each swab to hit one point inside my mouth or throat. She touches one point, with one swab at a time, in a sequence. The cold touch in a certain order, over time, may stimulate my swallow. The big thing we really, really want is for me to Gag! Yup, twice a day a highly trained professional comes at me for 1 ½ hours with the goal of making me gag. So far nothing. She records each group of swabs in her notes, where did she swab and what was the response. So far, there is none.
Between sessions I keep pretty busy. Yesterday, Lola came to visit. My neighbor friend brought her. Pets are allowed to visit, even encouraged to see more than just their person. I met her at the elevator and she twirled and wiggled her bum endlessly. Lola smiled at me and then I realized how much I missed her. My heart ached then and has not stopped since her visit. My neighbor friend brought Lola to me for two reasons. Of course seeing my dog is great comforting medicine to help me feel better. But there was something I could do for her too. The hair of my Red Pomeranian is luscious and long. When it is not trimmed around her bum, the area becomes quite dirty and not very lady like.
So my first order of business with my angel Lola, is to clean her backside. I take her back to my room and use all the supplies that are stocked for me, on her. I can lay out a big protective pad, wet clothes or gauze, cut the dirty fir and clean and powder and then get rid of all the dirty stuff in a sealed hospital bag. Pretty as a picture she is, once again. But something is missing. At home, when I clean her unmentionable bits and bobs, we always have a cookie after it is over. I mean, this is a bit unnerving, this kind of interaction. So we always clean up and we both get a reward for our efforts. My reward is her visit. But I have no food for her. Nothing! Not good. I ask the staff if they have any crackers or something that I could give Lola. But as I said, it is Passover. No crackers, but rather an endless supply of Matzoh. The unleavened bread comes in big sheets. I secure a sheet from the common room while they are getting ready for lunch. And Lola has a rather substantial snack. I break off a piece at time for her to beg, bark, and pirouette to get. I make it last. But I can’t make Lola stay. She goes home, with my heart. I stay. For the first time since 4/4/13, I have a goal for the future. I want to be with Lola. I need to take care of her. That is my job now.
Mom visits too. She brings me fresh laundry and things from home. She also brings the mail, full of bills. Ugh. She brings the report cards too, from school. It is April and they are due. It seems forever since I saw my kids. I try to focus on filling in the accurate grades and writing comments so they can be read. My hands are so weak. It takes a long time to complete each one and the writing is sloppy. Come on Rachel, FOCUS! I keep repeating this to myself. I’ve got to get them done. Somehow I do, but I do not remember much of what I wrote. That world is so far away from me now.
And there are many visitors. My Godmother, dear friend and coworker comes and collects the report cards. She fills me in on school and her goings on. I love seeing her face and hearing her voice. I am listening intently, but honestly, I can’t remember WHAT she told me. Three other fellow friend teachers come. Their smiles and energy is beautiful to me. But I am so deathly and lifeless in comparison. My humiliation is great. Maybe some make-up would help, I think to myself briefly. The next thought is, why bother.
A beloved sister-friend comes to visit with her baby daughter, bringing their light and love. We had been so close. And then we were so estranged. (And I am not very clear what happened. Our lives were going in different direction to be sure. I had been shutting her out and had walked away from her for a while, to protect myself from pain. What pain? My pain was here, now. And real. And she was not the cause of my pain.) But for some grace, she is here. She came to my hospital several times too. . And I am so grateful. I have nothing to offer her. But I feel safe with her and so I smile when she comes in my door.
When the visitors leave, I can take another shower alone. The heat is good and I am confident in the routine. I keep myself safe while I perform my daily functioning. I take care of the wound. Once a day, I head downstairs to the gym. I work a bit on balance and the stairs. There are PT folks there who are friendly to chat with for a minute between their patients. I can walk out to the terrace. I can and do watch a lot of T.V. in my room. I started off with nice romantic and funny films or sitcoms. But I can’t laugh with them or at them. I can’t stand outside regular people and smile. Because I am outside. I don’t fit into the world anymore. So I change the channel. There are winter Olympic sports on. I like watching the Luge and curling is cool. A bunch of people on cold ice with brooms yelling at a big stone circle. Makes sense to me.
There is also a lot of poker on TV. I grew up playing poker with my dad. He has been a part of the same poker game for 30 odd years. When he is home, they play one Friday a month. And my dad taught me how they play. He said I have a good poker face. I hate losing my money. I love winning somebody else’s money. This sense of competition combined with the desire to be good at something that my dad loved, proved to be highly motivating. My dad and I would sit near the fire in the kitchen at Wessy. The light was cozy, the fire warming and the logs crackling, comforting. We would play closed hands of games I knew and then open hands when he taught me new games. I love 5 card draw and 7 card stud. Poker time with my dad made me feel so safe and yet exhilarated, a strange combination of emotions. I played off and on with him and friends over the years.
I remember one time after college. My boyfriend had grown up in a nearby town and stayed friends with the same group his entire life. They had a poker game one night and I was invited. I was beyond excited for a chance to play in an adult game of poker. It was like being asked to play in my dad’s game, which I had always wanted to but never asked if I could. I had collected my coins, found out their ante and their limit from my boyfriend before the game. He laughed. It was a friendly game, he said. More about getting together, having a few drinks and catching up than serious poker. I heard him. But still, this was my big chance to prove my poker prowess. And sure enough, at the party everyone was drinking quite a bit and playing cards. I waited patiently for a while, until I was invited to play a few hands of poker that night, I did not consider the idea of a “friendly.” I played to win. And win I did. And I collected my winnings. The rest of the table laughed and polished off their drinks in my honor. They asked me to lay down and show the hand I had won with. My immediate answer was, “pay to see.” Those words my dad had taught me well. Even though I wasn’t going to play with these guys again, and even though there was so much drinking that they wouldn’t remember, I would not reveal what hand I had. Pay to see whether I took your money with a winning hand or a winning bluff. I was dead serious and they all roared in laughter. My line was the hit of the night. I remember that.
So back in the home, I tuned in to the poker tournaments. I watched them play a game I didn’t know called Texas Hold-Em. I liked to watch Phil Ivey. There were women who played in these very high stakes games. It was hard core, big money poker. And the TV showed what all the players had in their hands. So I watched the “poker faces” around the table. I could get totally engrossed in how each would handle the next card they were given. The personalities each had different tells and a range of dramatic or practically comatose reactions to the game. It was a game. And yet, to me it was real. And so I turned the TV up louder at night in an effort to make the World Series of Poker my reality and drown out the sounds of the home.
I couldn’t escape my reality for long. My machinery beeps, my tubes tug inside me, the spit collects and chokes me, and the fear comes back. But for that hand of poker I am free. And so I am grateful for my TV and the volume button on the remote.
April 17th 2016
I am on vacation. The calendar says so. But it takes a while for me to transition, to turn the volume on the teacher brain down and change the channel to Mom Brain, Wife Hat and Home as my favorite channel. So of course, sleep is not happening much yet. And Rondo doesn’t help much. He can be a bit of a night owl. Really, he can be a nocturnal party animal. We used to lock him out the back door in the middle of the night if his playing disrupted sleep too much. He had the whole attic with cozy arm chairs, Tim’s not yet finished computer office, mountains of yarn, many windows and his own litter box. It’s not like we were locking him out in the cold. He would just curl up and go to sleep most times. But I have been hesitant about banishing him to the attic since the incident with Clarisse the starling. So I keep him inside. And he completes a circuit of sitting on each bureau, knocking stuff off each bureau, stretching while climbing the curtains and jumping onto my bladder. Good times. But I love him so. And in between bouts of terrorist activity, he stretches out along my left side, cozy, warm, purring and safe. Really Good Times. In those moments, I rest enough.
I love having the day time with “the mens.” We are all so frantic with work and school usually. My goal for the vacation is to really be conscious of the three of us, being a team, working together and enjoying each other. And we do.
The day is off to a reassuring start with bacon and eggs and toast. Rondo has to get locked up during breakfast, as usual. Ciro gets a crumb of toast with butter and Gus has one or two or more nibbles of bacon. Laundry under way, we head out for a bit. Jason needs new cleats for baseball. A dear family that I have met through being on an AHA/ASA Advocacy Board, have a gently used sporting goods store to raise money and awareness for sudden cardiac disease in atheletes, CPR training for all students, and AEDs available. Their family speaks from the heart and knows that lives can be saved. The shop is open once a week and Jason, Tim, and I are there. We dig through soccer and baseball cleats of all sizes, and emerge victorious with the right ones for the season. Success. We mark our success by stopping by our cousin’s cupcake shop. Tim gets a whoopee pie , Jason wants a rice krispie treat that is made with fruity pebbles or something like, and I get a chocolate chip cookie.
The candy cane lights that surround the shed and the wreath on its window, along with a wreath over the mantle in our living room, finally come down. I love Christmas all year round and I go a bit nuts decorating during the season. These final remnants of the season have been lit since the day after Thanksgiving. For me, the light and hope I see in them is comforting. But spring is really springing so I am ok with taking them down. As long as I have two more sets of hands, we take down the Easter decorations (That holiday was super early this year.) and clean up our second floor front porch. Cups of tea are best sitting outside. And Ciro so loves curling up on his wicker in the morning sun on that porch. It warms his bones. And his green eyes smile at me.
I take Gus for two short walks. His toenails are too long and his girth has expanded over the winter. That is not a very flattering depiction of my beloved God Dog. My Gus bus puppy luppy, is the best. He is another angel in my life.
Lola got sick very fast about 5 years ago. She had glorious years with me and Tim and Ciro. Tim was her sweet love, from the moment she laid eyes on him. I continued to dote on her and she returned the favor. Ciro was always her partner, or opponent in a wrestling tumbling match. Ciro never won. He would wrap Lola up and bunny kick her head with his hind feet, but she barely felt it. And then he would try to bite her, but the he got was a mouthful of red fur. So they would roll around like tumbleweeds until we broke em up for a cookie.
Lola grew to love Jason, I hope. I think so. She would cozily nap next to baby Jason on our bed. And when we went for walks with the carriage, Lola would walk a few blocks on the leash with us. When she got tuckered out, I scooped her up and she rode in the very large bundle basket of the stroller, under Jason’s seat. It was a sight to see. Jason would wave at people he saw on our walks that were coming toward us. Once we passed the people, Lola would bark her head off at them from her seat down below. She only got them after they passed by. They would spin around startled by what dog was barking so near, and then look down, see Lola and giggle. Lola loved the walks and the rides with Jason. And we don’t need to go into what she thought about the crazy undignified youth I inflicted on her. She sort of denied Rondo’s existence. So, nuff said about him.
So when we saw every system start to fail her, we knew. When the day came that Lola was not happy, we scheduled her appointment with the vet. She would not suffer a day in her life with us. When she had had enough, when her life was not the cake walk I promised her, she gave me a look. Lola did not give me a smile that day. She looked at me and needed my help. It was my turn to “put on my big girl panties,” as Jennifer had said. I didn’t avoid her look. Tim and I had a plan for her last day with us. That day we cooked one pound of bacon. This is a common event in our house. Bacon is one of our most sacred and beloved, deeply appreciated foods. But on this day, it was uncommon what happened to it. Lola had the lot. Yup, it was all for her. And she ate all of it like a champ. She lapped the plate clean. Then we took her out to the back yard in the warm morning sun. And for the first time in weeks, her body moved freely and she scampered around joyfully. We all said our goodbyes, Tim and I took her to her Doctor for 8:30am, and I held her in my arms while the medicine did its job and she left this world for the next. Life on life’s terms, a sad one for us and I think for Lola it was a gentle, loving, trusting and very delicious morning.
We had done the right thing. And our hearts were broken. But there was a big hole in our lives. I only made it a week before I was checking the shelter’s website for a new family member. And they had a Pomeranian that day. Jason and I raced over after school. We went in and asked to meet the Pom. She had been adopted already, of course. So I asked to see a young pup I had noticed on the web site. Jason and I kneel down on the floor and wait for her to be brought out to us. The young pup comes out and bounces vertically in the air above our heads in her excitement. Gorgeous, but a bit high energy for our home. My face must have dropped. The nice lady asked us if we want to meet Gus. Gus? Gus, the older adult beagle who had been rescued out of Kentucky? I had not considered him. He was bigger, older and not Pom like. But she said Gus should meet us. Jason and I waited and watched while Gus came out, most gentlemanlike from the kennels. His tag wagged a bit when he neared Jason. The nice lady told us to take Gus outside and walk him around their field area for a bit. It had been raining most of the week since Lola passed. But we went outside with Gus, and the sun came out. And Jason smiled. The two played in the field in the sun for a while, Jason giggling and Gus smiling. (And beagles, I now know well, have smiling or guilt giving eyes like nobody else.) And I knew. Our new GodDog had found us.
So the start of our vacation has something for everyone under our roof. The Mom and Wife Brain is ON! Our Home is calling loudly to me and with a very grateful heart, I listen.