Story of a Chair

 There are hot tears running down my cheeks when I wake up a full hour before my alarm is set to go off. I lay quietly for a moment, assessing my feelings: I am unsettled and sorrowful. The last few days have brought many reasons for unrest into my soul; there have been shootings, racial unrest, and lootings near the city high school where I teach. But this feels more private, a personal grief. I fling my arm across to my husband's side of the bed and grab his pillow, bringing it close.

The pillow no longer has Ron's scent. I burrow my face into it, will my heart to continue beating, and the reason for my early morning sadness becomes clear.

The chair.

Last night, my son and I heaved and shoved and pushed my husband's heavy lift chair out to the porch, down the steps, and onto the front lawn where our town's heavy trash truck will pick it up in the morning. Weighing 168 pounds, it was not an easy feat. I clutch Ron's pillow to my chest and remind myself it was equally hard to bring it in.

I'd been looking for a lift chair for my disabled husband for months, but the price tag always made me shudder. The week before Ron's 68th birthday, I saw an ad on Facebook Marketplace: "Lift chair, maroon, good condition, $200." I called the number and arranged to drive down to Kennet Square on Saturday to look at it. My son and I left the house early, telling Ron's hospice nurse we'd be back by noon.

The chair was ugly, but serviceable. We lashed it onto the back of my Nissan with bungee cords and I eased back up Route 1 with my flashers on while Allen kept an eagle eye on the chair. Once home, my strong son managed to push the chair up the hill in front of our house, bully it up the steps, and squeeze it through the doorway. We put it by the fireplace, in perfect line with the television, and made a sign for the seat: Happy Birthday!

I'd wanted the chair to soothe the physical problems of Ron's hurt body; I still had hope that he'd improve. I envisioned the possibility of a future for us, the trip to Hawaii we wanted to take, golden years spent together. 

The first week we had the chair,  Ron pulled on the remote too hard and snapped the wires; I ordered a new one on Amazon. The second week, Ron pushed his weight against the arm and it pulled away from the frame of the chair; Allen turned the chair on its side and hammered the arm in place. The third week, Ron fell against the foot rest and bent the frame; Allen used a hammer to straighten it out. The fourth week, Ron ripped the pocket on the side; I took a tapestry needle and carpet thread and sewed it back. The fifth week, the electrical cord shorted out: Allen went to the hardware store and bought a new one.

By the sixth week, we had no need of a lift chair.

As faint morning light begins to lighten my bedroom, I wrap my arms around Ron's pillow and hug it. There is a light tap at my door. "Mom?" says Allen. "Are you awake?"

"Yes," I say, sitting up in bed. "Come in."

Allen's 6 foot 6 inch frame fills the doorway. 

"Couldn't sleep?" I ask.

"Thinking."

"Me, too." I pat the space on the bed next to me and he sits down, leaning his head against my shoulder. Allen's life on the autism spectrum made accepting his father's death particularly difficult. 

"I know it was time to get rid of Dad's chair," he says. "No one but the cat sat in it now. And I know it made you sad to see it everyday. But it feels like there's a...hole, you know?" He puts his hand on his heart. "Like an empty space." 

I nod. "But it won't always be empty. We'll fill it with new memories and put Dad into them."

He sighs. We sit there, our heads bowed together, and we hear the rumble of the trash truck as it pulls up to our house and squeals to a stop. Allen makes a move to rise; I put a hand on his knee and he slumps back onto the bed.

        "We need to let it go," I whisper and he nods. There are voices, faint and low, drifting across the front         lawn.  Truck doors slam. We hear the rev of the engine as the truck moves away from the  house.

        Allen rises and looks out my bedroom window. "It's gone," he says. "Dad's chair is gone." I join him         at the window, and for a few more moments we gaze out at the empty front yard. Our arms around             each other, we cry.

 

 

After the End: Finding Rest

"And there was a certain royal official whose son lay sick at Capernaum. When this man heard that Jesus had arrived in Galilee from Judea, he went to him and begged him to come and heal his son, who was close to death." ( John 4:46)

I leaned my head against the wall for a moment, pausing to try and infuse some strength into my weary body. The walk from the parking lot, through the medical pavilions, and down the long hallway to the main hospital seemed to get longer every day. There were times when I ran down the hallway at top speed, anxious to get to the trauma ward or the surgical unit, afraid it would be my last chance to see my husband. There were other days, like today, when I could barely put one foot in front of the other. I felt exhausted, convinced I could easily melt into a puddle of tiredness onto the beige rug of the hallway. Desperately, I needed rest.

But after years of caring for a chronically ill husband, rest was not likely to happen.

The nobleman in John 4:46 would have known what I was talking about. While we are not told how long his son was ill, we can surmise it was not a sudden illness. Can you see him pacing the floor of his son's room, sitting by his bed and holding the hand of his child? Can you imagine him calling upon all manner of healers and doctors to try and bring relief to his boy? I can; for years, we left no stone unturned to try and find a cure for Ron. We traveled up and down the east coast, seeking answers to his chronic pain. I can empathize with this father, then, who likely had connections as a nobleman, perhaps was even in the employ of Herod.

Maybe he'd been give false hope. Maybe along the way a charlatan or two had promised a cure. In our nineteen year battle, we encountered more than a few of them as well.

But then the nobleman, this worried father, heard that Jesus was nearby, just 20 miles away in Cana. Had he heard of the first miracle Jesus had done at the wedding, turning water into wine? It is clear he knew something of Jesus; he addresses him as "sir", which in the Greek is kyrie, meaning "lord." It seems from what is told in the book of John that he had traveled alone; his servants later met him on the road. What is also clear is that he had faith that Jesus could heal his son. When Jesus said, "Go thy way, thy son liveth," (John 4: 50) he did not question it. He knew it to be true.

Even as Ron suffered for so many years with so many maladies, I never stopped believing in God's ability to heal him. I did sometimes wonder why He did not. It was often hard to reconcile that to a Father I believed loved Ron.

To me, the most important part of the story of the nobleman is not the healing of his son; we have many examples of Jesus' ability to heal. What strikes me is this: This worried and heartsick father, probably weary from sleepless nights keeping vigil at his son's bed, did not immediately run home. No. He believed what Jesus said. He believed his son was healed. I can hear across the years the sigh of relief he breathed. I, who have experienced the exhaustion that comes with caregiving, can also feel the weight of his body sag as his shoulders round, his head bows, and now bereft of the adrenaline that kept him moving forward, can now rest. That night may have been the first good night's sleep he had in a long, long time.

And it happened because he took Jesus at His word, never doubting his son was now well.

I, too, take Jesus at His word. So many years of caring for an ill husband has left me depleted. During the years of caring for Ron, a restful night's sleep was only a dream. According to Crossroads Hospice, "caregivers must sacrifice a great deal from their personal and professional lives." I was among the 60% that still worked full-time (and often had two part time jobs as well). I can concur with the 55% of caregivers who say it is an overwhelming way to live. I need time to recover in body, mind, and soul.

God did not heal Ron. But God did take Ron home to heaven to live with Him. And it is now, as I approach the one year anniversary of his home going, that I am finding rest.

How can you take Jesus at His word? What promise can you claim today?

My Mocassins

Pray, don't find fault with the man that limps, 
Or stumbles along the road.
Unless you have worn the moccasins he wears, 
Or stumbled beneath the same load.

I had managed to pull Ron's walker, the beach chairs, and the umbrella from the back of the van and I shut the door tightly, then walked around to the side door. "All set?" asked the van driver, Maryann, brightly.


I nodded as I helped Ron down from the van--two giant steps--and tried to steady the walker on the hilly drive. The beastly thing had already rolled away from me twice as I tried to lift all 30 pounds of it down from the van. There is no ramp into this hotel on the beach, so I needed to lift the walker up three steps while Ron steadied himself on the railing, then hauled him up the steps, then go back for the beach paraphernalia.

There may be tears in his soles that hurt
Though hidden away from view.
The burden he bears placed on your back
May cause you to stumble and fall, too.

In my childhood and youth, going to the ocean was a favorite activity. How I loved to jump in the waves and build sand castles at the ocean's edge! A day at the beach was full of adventure and family fun, chasing my cousins and my brother in and out of the umbrellas, hunting for seashells, and running under the boardwalk to cool off our hot feet in the damp sand. I loved to bring my own kids to the beach, each one carrying their own bucket and towel. And, when the kids were grown, I loved to just come and sit at the water's edge, letting the song of the waves wash over my weary soul.

But the peaceful lull of the ocean's side is more a memory now. It's too much trouble to get there.

The house I rented for the week is lovely, but not nearly as close to the beach as advertised. We have enjoyed the pools and the quiet, but I was determined to sit by the ocean and spend at least one afternoon trying to let the waves work their magic on the stress produced by a hectic school year. The transit van, the resort office had told me, would take us "right to the beach." So far, though, we had only made it to the hotel where we would pick up  the beach wheelchair I'd had to jump out of the van 15 minutes ago to reserve, following a security officer down a labyrinth of hallways and stairs to the storage room where the chairs with their bulbous tires are kept. The officer wheeled it up to the pool area, where it now waited for Ron.

Just walk a mile in his moccasins
Before you abuse, criticize and accuse.
If just for one hour, you could find a way
To see through his eyes, instead of your own muse.


Slowly, steadily we made our way across the lobby to the pool area and I settled Ron into the chair. But I could not handle the walker along with the other stuff I had to carry so, amid Ron's protests, I left it in the security office. Then I pointed out to the guard at the desk that there was no way I could push my 350 pound husband through the beach sand to the water's edge. We waited another 10 minutes while the guard called someone. The guard pushed Ron down the ramps by the pool and onto the sand where a lifeguard took over. I struggled with the other stuff alone.

We made it to the seaside and set up camp, but Ron wanted to go sit at the water's edge. So with some heaving and ho'ing, I managed to get him out of the beach wheels and into a chair at the edge of the ocean. I settled him in with bottled water, sunscreen, and a towel. Then I sought a few moments peace under the umbrella, keeping a watchful eye on Ron.

Brother, there but for the grace of God go you and I.
Just for a moment, slip into his mind and traditions
And see the world through his spirit and eyes
Before you cast a stone or falsely judge his conditions.

Ron loves to talk to people, so he was enjoying himself at the water's edge, splashing in the surf. And, as much as I love my husband, I was enjoying a few moments of peace, away from the demands of caring for an ill spouse. I ran down to check on him every few minutes,making sure he was hydrated and was not burning. People were stopping to talk with him and a few men offered to help him when he needed to get up. For a few moments, I had the luxury of letting someone else take care of Ron.

But peace however hard won, is seldom lasting. While I am certain no criticism was intended, several women did stop by my chair to ask if my husband was alright, if he was "safe" down there. I smiled and nodded and tried to go back to reading. But the peace of the ocean was pretty much gone for me. 

"Handicapped accessible" is a sign placed on all buildings that have a ramp or an elevator, even if located in a hard-to-find corner. Buildings constructed before 1970 do not fall under the guidelines of the Adults with Disabilities Act. While it is true that "new" construction must provide access for all, no such requirements are attached to older buildings. So when I booked this little cottage by the sea and was told it was all "handicap accessible" it was only true to a point. Yes, the van will take Ron to the beach, but the van has no lift. Yes, there are beach wheels available, but the ramp ends at the pool area. And as kind and understanding as people may try to be, telling me "it's only two steps up" does not help me when trying to maneuver a large man over concrete.

Eventually, we needed to backtrack our steps. Several of the men who had volunteered to help Ron did their best to  get him back into the beach wheels, and I got a lifeguard to push my husband back up to the pool, while  carried the rest of the load. Once we traded the beach wheels for Ron's walker, we called the van driver and then needed to negotiate down the steps to wait for her outside. By the time we got back to the house and I unloaded everything, whatever peace I had felt at the ocean's edge was pretty much gone. I got Ron into the house--also advertised as accessible but with four wooden steps--and he fell into bed for a long nap.

And I sat on the back deck with a cup of tea, contemplating how easily we take for granted access to things we enjoy, assuming others can have the same freedoms. 

Remember to walk a mile in his moccasins
And remember the lessons of humanity taught to you by your elders.
We will be known forever by the tracks we leave
In other people's lives, our kindnesses and generosity.

It is not easy being Ron. It is not easy being me. I am often left to carry the burdens Ron cannot. And it is a crying shame that words like "handicap access" are not really what they should be. Just as Universal Design for Instruction allows teachers to build in--not add on--access to the curriculum for all students, Universal Design for buildings needs to take into account the needs of all the population. 

So, while the sounds of the ocean will continue to lull me into peace, the journey to the ocean with a handicapped man cannot be taken lightly. Today, we're headed to the pool.

Take the time to walk a mile in his moccasins.
Mary T. Lathrop, 1895

Just Being: At the Beach. Part I.

I love the beach. It is the place in the world where I feel the calmest; the lap of the waves, the call of the seagulls, the scent of the salt water all bring me back to happy childhoods romping in the surf at Rehoboth, not a care in the world. Even in those years when trips to the beach meant dragging baby equipment, sand toys, and a cooler full of juice boxes, the peace to be found at the ocean's edge was worth the price.

Yesterday, I wasn't so sure.

Bethany Beach is different than Rehoboth and has a parking system best described as odd. First you need to find a "Park-o-matic" machine, plug in your credit card, and receive your time-stamped ticket. THEN you wander around, looking for a place to put your vehicle. At Rehoboth, it was not unusual to dump kids and spouse at the boardwalk with accouterments, then drive to the third block back before finding a suitable spot. I assumed--erroneously, it turned out--that the situation at Bethany would be the same.

First of all, unloading a disabled spouse with a walker is not the same as unloading active toddlers with strollers and diaper bags. It's harder. You can pick up a toddler and tuck him under an arm; you cannot in any way hurry along a disabled spouse. Just getting Ron's Rollator out of the trunk of the car requires more arm muscle than God intended women to have. Once that was out and Ron was settled on the seat, I lugged out the beach umbrella, chair, towels, and cooler. Then, with a jaunty wave, I was off to find a parking spot.

This is not a quest for the faint-hearted. Only the first block of Bethany, as I soon discovered, is for the sun-seekers. The other blocks are given over to residents and businesses. By 11:45, most spots were already taken. (I blame this squarely on Ron, who is not a morning person. I, as the world knows, am. I could have been on the beach at 6AM.) After 20 minutes of our allotted two hours, I found a spot about four blocks from where I had left my husband. Then I walked back and began the fun part of the day: getting Ron and his walker to the sand.

I scooped up all the equipment and dumped it in a spot as close to the ocean as I could get, burning my feet along the way and leaving Ron perched on the Rollator at the end of the wooden path. Then I went back to help Ron, valiantly trying to push the darn walker through the sand. Not to be. Finally, I folded the walker up and carried it on one arm while Ron leaned on the other. Okay, now you have the image. Me, with my 350 pound husband on one arm and his 30 pound walker on the other. We finally made it to where I had dumped our stuff and when I began to struggle to put up the umbrella, a tanned and blonde young fellow came to help. Blessings on you, young sir. Someday, you, too, will be old.

I settled Ron into his seat with a sandwich and a coke, and sat in my own beach chair with an iced tea for a few moments of quiet. Ahhh. There is , as my mother often pointed out to me, no such thing as rest for a woman, so as soon as Ron had wolfed down his sandwich, he wanted to go sit by the water's edge. Now the beach at Bethany has what is best described as a cliff that drops off to the water's edge. I was contemplating how to manage this feat of strength when Ron called on a young fellow sitting near us for help. Vacationers are generally nice people, so while the young fellow carried the Rollator to the surf, his girlfriend and I help to steady Ron down the cliff.

Ron was settled and said he would be okay for a while, so I climbed back up the cliff to the umbrella and my novel. I gave the nice young folks a brief explanation: "He was in a car accident 14 years ago. He's had 26 surgeries and he's frequently in the hospital." The lovely girl puts a hand to her chest and gave a gasp. Then, because they are young and tanned and in love and because Ron and I were once all those things, too, I went on. "We've been married 37 years. You don't give up on someone because they are ill."

"Of course not," said the girl. She gave her boyfriend a steady look.

"For better or worse," I said and smiled.

They both nodded, this golden couple on this golden day, and the girl touched my shoulder. "Good for you," she said. "Good for you."

And so for a few moments out of what has been an incredibly long journey, there is not pain or hospitals or classes to teach or bills to pay. There is just me and the ocean, listening to its soothing sound as I sit not reading my novel, just for a short space of time being.

Good for me.