So I haven’t posted in 5 days and I am sick, discouraged and a desperate woman. So to make up for not posting I am sharing a short story I submitted to a contest for a local mag. I had a word limit of 2000 and a deadline to meet so the ending is lacking. I labor under delusions of grandeur that this could get published in the New Yorker. Ironically a similar story, albeit one of far superior quality, did appear in the New Yorker shortly after I hatched this one. (March 2011, Story’s End)
Ebb and Flow
“Jane!” I called my oldest daughter from the hospital bed that was situated in our living room. My catheter had broken and this was the first time Kate, my wife, had left the house in a week. I’m not sure how I ended up in this place. This isn’t going to be forever; I plan on swimming in the ocean one more time.
I had always been able to swim like a fish. It’s where I am most comfortable – at least where I was most comfortable. This was one of the last things taken from me. Last fall, I was still swimming weekly at the Y. When flu season started it had become too risky to expose me to so many germs. With my immune system being compromised… well. Four years ago I was driving to Rehoboth from Philadelphia. I was walking independently and even briskly. I was diving in the ocean.
I remember teaching the girls how to dive under a wave. God, it seems like lifetimes ago. I told them to get way under the wave so their bellies were almost touching the sand and they would feel the wave “spank” their bottoms then they would know to surface.
During family vacation in June I needed a bar on the side of the bed to help me get up. Also new this year was the O2 machine they had to rent since 12 tanks were clearly not enough. Rounding out the equipment were two walkers, a wheelchair and a shower bench. In addition to constant oxygen were 23 meds a day, four Nebulizer treatments, and three anti-fungal treatments. Because of the medicines I’m on, I had some problems with, well, pooping. Kate had tried fruit cups, water, prunes and finally Milk of Magnesia. After five days the dam broke. Kate cleaned me up but sadly that wasn’t the end of it. A little while later while my wife was out shopping with Tabitha, our baby, I had to yell for Jane, our oldest. She came running into the bedroom only to find me in a Depends with my pajama bottoms tangled around my feet along with the entrapment of the oxygen tubing. I was trying to hobble, without much success, into the bathroom and was passing gas the whole time. I felt humiliated, not like a man, certainly not like her father who could do anything. “Daddy can! Daddy can!” they would scream. I don’t know if I felt like crying for myself or for Jane who was trying not to cry as she set me free.
When the kids were little they would pack for the beach and they’d ask me if I was packed. I’d just be in my swim trunks and say, “Yep, I’ve got everything I need.” They would moan and tell me how I’d need a t-shirt and tanning lotion and a blanket and a towel and other clothes and sunglasses. I was worse than them when it came to avoiding being slathered with lotion by their mom. One time Kate put a smiley face on my back with the lotion just to spite me. My excuse was my olive complexion; sometimes I would burn but overall I’d brown. Ironically it was Kate who got skin cancer.
Each summer Jane and I walk hand-in-hand at the water’s edge. I often wonder when will be the last time. The last time was last year. The summer after my stroke we took our walk but it was difficult. The ebb and flow of the tide was hard to ignore. The movement of the water made me dizzy. It didn’t help that Jane told me, sobbing, how grateful she was that they didn’t lose me that last September. I never responded. I let her think I didn’t hear her. Truth be told, I didn’t know what to say. Or maybe I knew what to say but knew she wouldn’t have wanted to hear it, that they would lose me soon.
I see myself walking on the beach and looking at my feet. The give of the cool sand and the rhythmic lull of the ocean are comforting. When I look up, I am never sure who I will see. At times it is my older brothers playing football, my high school buddies, my beautiful bride, three precious little angels, three loud teenage girls who puzzled me as if they reminded me of people I knew but wasn’t sure how, an older version of Kate, three familiar grown women and partners along with three new little girls. Where did the time go? Who I see explains the stage of life I’m in. Funny, I don’t feel old enough for this stage of my life.
A recurring theme in my thoughts is See it’s not that bad, at least I can still… A couple of years back I played miniature golf. Two years ago I helped Jane carry wooden pallets up to the third floor. I was only on oxygen part time. Last year I could barely walk across the parking lot to the community dumpster and required a walker more times than not. I was on oxygen nearly full-time at this point. I couldn’t walk to the sofa from the first floor bedroom without a spotter and needed the walker. It was becoming harder and harder to finish this At least I can still … statement with a positive thought. In many ways I feel like I am disappearing. I can’t hear well even with the hearing aids, I wear glasses to read, false teeth, and find it challenging to process and articulate my thoughts at times. At family functions, I am unable to filter out sound and hear everything at once therefore nothing. I love when the whole family is together but feel left out during these times.
In the hospital I was alone as well. While the rest of the family could share their fears, I had no one. I spoke to the hospital psychiatrist about dreams I’d been having about being unable to perform at physical therapy and about dying. I am scared. A few months ago I told Kate I was worried because I knew she would be alone soon. Kate, always the cheerleader and seeing the positive, “poo-pood” the idea. I know she is scared too.
“I smell the beach!” we would scream as kids as my father drove us to the Jersey shore. Around the time my father turned 40, he bought a house in Ocean City, and my childhood memories are built around summers spent there. I remember all the smells: the aroma of pine and brine as we went through the Pine Barrens and as we crossed over the bay. I loved the salty taste of the sea even when it was knocking me around. I could never get enough of it. Days on the beach all seemed to run together. My father sold the place when we reached our twenties and became seemingly disinterested. What I wouldn’t give to have that place back. Maybe it’s too much to ask to swim in the ocean again; maybe it will be enough just to walk on the beach. First I have to walk period.
A few years ago, Kate and I bought a place in Rehoboth. We only had it about a year – it was too hard to take care of two homes and Nicole was having her first child and would need Kate to help out. It was probably one of the best years of our lives. We could walk on the beach whenever we wanted, listen to a steel drum band at a place on the water, or sit on our back deck and have coffee. In our next life, we will keep that place.
Two days after returning from family vacation, I was rushed back to the hospital with heart failure. They tell me my pulse ox was in the 50s. In the ambulance I thought to myself Is this the last thing I’m going to see? The doctor asked me how I felt about being put on a ventilator. At first I said, “If it’s necessary, okay, for two weeks, but then if I’m not better take me off.” Then I remembered why I had made an advanced directive. I can barely tolerate being hooked up to oxygen twenty-four seven let alone a ventilator.
For our anniversary Jane usually tries to sneak us away for a couple of days at the beach. On our last anniversary visit I realized she really was her parents’ child. One day the three of us sat on the beach for almost two hours – no chairs or towels or bathing suits. Just sat right in the sand in our clothes. We watched monstrous waves come crashing in. Her mom lay on her side while I dug a hole in the sand with my hands. We hardly spoke at all. Sitting between us like that it was like she was a little girl again.
One good thing is I saw a lot of the family this summer. Each of the girls take turns staying over now that we’re receiving hospice services. This summer Jane spent several days a week here. Nicole, our middle child, and her family jettisoned their annual two-week vacation to Canada. Jane and Kelly remained within a three-hour drive and Tabitha spent much of her free time exercising me and helping me regain some of my strength.
Simple moments during this time have brought me peace and pleasure. Jane stays on Wednesday and Friday nights and has to leave for school by 5:30 in order to make it to Georgetown on time. I enjoy getting up in the wheelchair and having coffee with her. While she is trying to creep through the living room, I am wide-awake, being a good “baby” so she will let me out of the “crib.” These mornings are largely uneventful but having that one-on-one time during the quiet of the morning is just … nice.
Recently I’ve made gains. When I first came home from the hospital, I wasn’t able to walk or even stand. The girls had to lift me into the wheelchair. I can now walk to the back deck with the walker. It’s not pretty, but I can stand on my own.
It was on our 42nd anniversary that the stroke struck. We had decided to treat ourselves with a bus trip to Atlantic City for the day. From a hospital in AC to a hospital outside of Philadelphia to two months at Bryn Mawr rehab, I finally regained the ability to speak and walk. My right leg dragged a little bit, but I was walking.
Yet the real blow, the knockout punch came during my next visit to the doctor. I was anxious to get back on the road and drive again. I remember daring the doctor, “Now tell me it’s not going to be a year before I can get my license back.”
He replied, “No, not at all. You’re through. I can never sign off on you driving. You’re a high risk. You’ve had previous minor strokes and now this major one. In good conscience, I can’t do it.” With all these teenagers and people talking and texting and drunk drivers and I’m not allowed to drive because I’m the danger on the road? After that I couldn’t climb a ladder or even ride a bicycle. All of that is gone.
I watch the ocean waves roll in beginning with a mere swell then build, build, build, crest, crash, wane and disappear while others continue the cycle. There exists a connectedness between the waves, gathering strength from each other, dragging each other back out to sea. The underflow often takes you out with it – the pull of the dead so you don’t forget. Every once in a while a riptide would claim someone for the other side. Not today, please, no not today.
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My father passed away on October 3, 2010.