An important decision needed to be made.
Beth heard back from graduate schools. With acceptance letters from three law schools and Harvard’s Ph.D program at the School of Public Health, she narrowed down the decision to Georgetown Law in Washington, DC, or Stanford Law in California. The idea of going to graduate school in an unfamiliar place appealed to Beth, since she expected to work in DC after law school. She selected Stanford without ever visiting the campus, since she had no open weekends prior to the decision deadline. She wasn't concerned. A great school, great weather, and great outdoor pools. How could she go wrong? Beth accepted at Stanford Law, then promptly and officially deferred law school for one year, as planned four years before with Peggy. Nothing would interfere with her month in Beijing.
Beth’s happy news about Stanford coincided with bad news for John.
The first-year teachers in Newton received pink slips. Their contracts would not be renewed because of major budget cuts. We couldn’t believe it. He had National Board Certification, stellar evaluations, and 31 years of teaching experience, but only Newton seniority mattered. I updated his resume and helped him apply for teaching jobs while he finished the school year. He interviewed in Waltham and South Boston.
At the end of April, I met Beth at the new pub under Harvard’s Annenberg Hall. A packed crowd gathered to launch SPINALpedia, the new disability project Brittany co-founded with Josh Basile. The band Braddigan performed at the event. Beth spoke to the crowd along with another friend and two other quads, including Brittany’s dad.
“My goal was to create a support resource that uses the power of people’s experiences to motivate people with new injuries to adapt their lives,” Brittany said. The band’s lead singer, Brad Corrigan, added, “As a musician, I love stories that are real, and there’s nothing more real than someone sitting in a wheelchair, saying that there’s always hope.”
During the concert, a stranger tripped and accidentally knocked Beth’s chair over backward.
I moved across the room to help, not worried. She had tucked her head safely forward as she fell, chin to chest. Brittany pushed everyone out of the way, including me, before lifting Beth off the floor and back into the wheelchair. Apparently, this had happened before, and Brittany managed the situation to deter anyone inexperienced or drunk from helping. Beth teased her, and Brittany apologized to me, but there was no need. Why would I object to someone looking out for my daughter? With SPINALpedia successfully launched, the website followed, with video clips sharing individual experiences with paralysis.
Next: Florida and England!
John and I searched for simple, sparse furnishings for our new Massachusetts apartment in many stores. I shopped with Maria, too, and we checked sales and clearance racks for good deals as always. John teased about metal shelving units in all the rooms, and made do with just one in the garage.
We displayed family pictures everywhere.
Our furniture matched for the first time, and I got a kick out of shopping for kitchen towels with a red theme. I found some with brightly-colored poppies, complimenting a set of red bowls with white polka dots.
Medication kept the lid on my depression, but failed to stop the headache. The pain level cycled, as always. with my heartbeat throbbing in my head during peak times. The base level had continued to increase very gradually since the onset. Even so, I appreciated the fact that the base level of the headache was manageable.
I walked up and down Bear Hill for exercise and helped John get his classroom ready. He had extra work to prepare to teach in a new school system in a new state. He reviewed the curriculum, all new to him. He also had to schedule and study for the teaching tests Massachusetts required, despite his National Board Certification and 30 years of experience. I debated about when to apply for a job. John suggested I postpone job applications until after the Beijing Paralympics, a year away. That was an event I wouldn’t miss, and I planned to stay in China for an extended time.
We talked to Beth on the phone from her team camp at the Olympic Training Center in Colorado as they prepared for another adventure in another country.
Newton, Massachusetts topped the list of the best small cities in New England.
The city shared a border with Cambridge where Beth attended college and Maria taught special ed. John applied to the Newton Public Schools and to a few other systems in the area. Two schools called him for interviews that he scheduled during his April school vacation.
To start spring break, we drove to Somerville and dropped off a carload of boxes and Beth’s cedar chest to store at Maria’s apartment. We visited with the girls between their busy work and college schedules.
John and I relied on our new GPS to find the Newton elementary school for his first interview. I dropped him off and waited for his phone call at Not Your Average Joe’s, my new favorite restaurant. He felt good about his interview.
Like Maria, John’s passion for teaching showed.
John accepted a second grade position in Newton to start in the fall. With crazy home prices in the Boston area, we viewed many apartments to rent. Our house payment in Ohio had been $475 a month including property tax and insurance. In 2007 near Boston, the rent for a nice two-bedroom apartment started at $1,900 a month, plus utilities. Slightly higher salaries did not begin to make up the difference, though it would be worth it to be closer to Maria and Beth. We paid a deposit on an apartment in Watertown Square with a July move-in date.
At his request, John’s friends hosted a happy hour for his retirement at a restaurant instead of a big traditional party. Gifts included an intricate scrapbook with personal messages from co-workers. The last day of school, he brought home a box of mechanical gadgets and science toys that he used to entertain his students.
We teased John about being a talented comedian—for second graders.
We prepared for another 12-hour trek. I drove with both of my girls in Maria’s Ford Focus from Tiffin to Cambridge. No hatchback or chair topper. We stuffed the small car to the hilt with Maria’s belongings—plus a wheelchair. Beth sat cramped in the back seat for the all-day drive. We planned to get her out of the car to wheel around or move the contents to give her a different position, but Beth shifted on her own and chose to stay put to get to her dorm faster. We drove directly to Pforzheimer House, where Maria and I camped out in Beth’s suite that night. In the morning, a real estate agent showed us apartments.
Maria would start her new teaching job in less than a week.
After viewing several places, Maria decided to rent the second floor of a house near Davis Square in Somerville to avoid the even higher rent in Cambridge. She could move in the next morning. Next, we shopped for a bed. Maria picked one to be delivered the next afternoon.
Maria and I slept in Beth’s dorm room one more night. Bright and early the next day, we unloaded the contents of her car into the empty apartment. Maria brought her shopping list for a Target run. We made it back in time for the bed to be delivered.
The new box springs wouldn’t fit up the narrow, winding stairway to her apartment.
The young delivery guys tried another way. One precariously balanced on the front porch steps and pushed the box springs straight up to the other who leaned over the second-floor balcony. Success. I stayed two more days before flying back to Ohio and treasured the time.
I admired Maria’s bravery in moving to an unfamiliar big city with her sister the only person she knew.
Next: Another emergency room visit!
In mid-December, my oldest daughter packed a suitcase for her flight to Boston after her last day of student teaching in Tiffin, Ohio. Maria had applied for teaching jobs and followed up with direct phone calls to ask for an interview. Her assertiveness, a skill I struggled with, landed her an interview in Cambridge.
Maria flew by herself for the first time into Logan airport.
She slept on a futon chair in Beth’s dorm room and rode the subway by herself to the interview. Maria tapped into her passion for teaching children with disabilities. After, the sisters met for dinner at Bertucci’s in Harvard Square before they flew home together. A few days later, Maria accepted the job as a lead teacher in the Cambridge Public Schools’ Special Start program for preschoolers with a disability. The position would begin in a few weeks, in early January. I was proud of her and excited for her, though I also would miss her.
Maria had decided to be a teacher when she was a preschooler.
At her first library story hour with no parents, the librarian told me how Maria found her way onto the storyteller’s lap. At home, her little sister Beth was her student. In grade school, Maria loved to help in her dad’s classroom during summer school.
Maria declared that we would live together forever in our Tiffin home, happily-ever-after.
A decade later, she planned her move to Boston while John and I prepared to sell the only home our kids had known. Our last Christmas living in Ohio embraced nostalgia. We watched The Princess Bride, again, and made popcorn. We played N’Sync Christmas music while we wrapped presents. Ben visited, and we laughed at old videos the girls called “baby tapes.” One of our favorites showed Ben, 5, pulling his little sisters on a blanket around the dining room table. A giggle fest. The video captured a perfect silly afternoon. At the Vermilion farmhouse for Christmas, we connected with extended family and met new babies.
Beth rang in the New Year with her best friends, Lizzy and Ellen, for the last time.
It was a recap of fondue and favorite movies, including Elf and the Grinch. They still laughed so easily. I admired the young women they’d become.
Next: A New Beginning!
Back home in Tiffin, Ohio, I accepted an activities job at the upscale Elmwood nursing home. Almost 30 years earlier, 19 and newly married, I worked as the first manager of Elmwood’s first group home in the nearby town of Clyde.
I worked five days a week on the Alzheimer’s unit, learning more than I wanted to know about the disease.
On the best days, we sang songs, told stories, made crafts, played games, walked together, and laughed. On the worst days, a sweet woman died in her bed or alarms blared when residents unable to walk thought they could. Or someone fell. Or a medical emergency required an ambulance.
Sirens always reminded me of the night of my car accident.
One November morning, Beth stopped at the dining hall for coffee on the way to a Harvard Women’s Swimming and Diving home meet. The cup slipped and scalding liquid spilled on her left thigh. She felt discomfort, but when she removed her leggings at Blodgett, she didn’t expect to see the small red hole in her thigh. Her coaches discussed the emergency room and asked a dermatologist friend in the stands to look at it. The doctor, a former college swimmer, cleaned and covered the third-degree burn, emphasizing the need to prevent infection. Wide scarring when it healed would be unavoidable. It surprised me that the dermatologist gave her permission for Beth to compete at the meet.
I heard about the burn the same day, but not the severity.
She neglected to disclose all the details. She left out the part about the burn exposing the bone. I assumed it wasn’t serious since the doctor and coaches allowed her to swim. She didn’t want me to worry. Nevertheless, I was alarmed when I saw the burn a few weeks later.
Skin problems healed slowly for quads, and infections? Dangerous.
We re-visited the issue of drink holders for her wheelchair, rejected in the past. Thankfully, Beth gave in this time.
Next: Elbow Woes!
I loved being home in Ohio, but the thought of Beth in Massachusetts made me sad, even though I knew she could handle living independently with her disability. I missed her.
We had been a team for four years.
I hit a snag with an incompetent clerk and a new prescription for her medical supplies. With a fast-dwindling supply, I called the company again. I made the effort to be nice—at least the first several calls. Then, I asked to speak to the clerk’s supervisor and she refused. I lost my temper and started over with another supply company, finally arranging an overnight delivery to Beth at our expense at the last minute.
My sadness amplified the normal day-to-day stress of my job. With elevated headache pain, I had trouble sleeping at the group home. I barreled through more weeks with unpaid overtime hours. Often on the verge of tears, I talked to John and let him convince me the stress of the manager job wasn't worth the money.
Looking back, I could have ridden it out.
Holidays were always the hardest time of the year to staff group homes. So instead of quitting my manager job in November, before Thanksgiving and Christmas, I decided to be considerate of the residents and other staff by leaving early in the New Year, almost three months away. I turned in my notice, relieved the end was in sight, and focused on setting things in order for the next manager.
I talked to Beth on the phone after she finished a 2,400-yard workout in one practice: 96 lengths in the 25-yard pool, almost a mile and a half.
Swimming that distance had not been possible a year before. As college competitions began, Beth would compete at all home meets at Blodgett pool as an official member of the Harvard Women’s Swimming and Diving (HWSD) team. Always too-busy, she appreciated the extra time she would gain by not traveling to away meets with the team.
I wished I could have been there for the first home meet of the season in mid-November. Beth dropped fifteen seconds in the 100 free compared to her first Harvard meet ten months before! And reset two of her short course American Records.
“She's probably one of the easiest people to coach in the sense that she always has a smile on her face, she's got a great positive attitude, and she's willing to try anything,” HWSD Coach Morawski said. “And she just kept getting faster and faster.”
“For her to make that commitment to coach me and, this year I’m on the roster, is really important,” Beth said. “It’s been great. I love it!”
Next: Together in Minneapolis!
My first day as manager of a Tiffin, Ohio group home, I trained to administer meals to a resident with a feeding tube, followed by me training other staff. I liked the four men who lived at the home, and knew two of them from when I worked at the local institution. I worked 24-hour shifts, 3pm to 3pm, often three in a row. It simplified staffing the overnight hours, but challenged me, mentally and physically. Sleeping well at the group home rarely happened. I scrambled to get up to speed on preferences, goals, routines, behavior plans, staff scheduling, meal planning, grocery shopping, outings, medications, paperwork, and new state requirements. On my days off, I was on call.
The day-to-day responsibility for the health and welfare of four men was daunting.
The men attended the county workshop for adults with developmental disabilities on weekdays. Ideally, that time would be used for administrative planning and paperwork. Instead, since the residents had multiple health issues, weekdays often included taking one of them to a doctor’s appointment. I learned complicated medication regimens, as well as scheduling regular appointments, ordering refills, and making sure all staff documented every small thing, every day, in the correct way. I often drove to the group home on my days off for at least a few hours, just to keep up.
My agency's new quality control supervisor visited one weekday morning after the men boarded the workshop bus; she had been the manager before me of the same home. She pointed out missing papers in the resident binders, which I was aware of. I regret not being more assertive. I wish I’d spoken up and showed her my long to-do list that included the missing items. Papers she neglected to obtain as the previous manager.
Instead, I stewed.
Next, my agency’s director made a counterproductive decision about a resident’s behavior plan by caving in to pressure from a resident’s family. I typed up evidence to support a better approach, to avoid dependence on a walker he didn’t need. I met with the director to plead his case, to no avail.
Later that day, the same resident threw a tantrum near midnight. Following the new behavior plan, I had to encourage him to use the walker by his bed on the way to the bathroom. He didn’t need one. The ill-advised plan guaranteed more acting out, increased dependency, and needless frustration all around. When his loud yelling finally ended, I poked my head into the other bedrooms to reassure and quietly tell the other residents everything was okay.
Good intentions, bad outcome.
The youngest resident thought my intrusion meant it was time to get up, so he jumped out of bed and started his morning routine. My attempts to explain and redirect irritated him. Nonverbal, he insisted on changing clothes and sat at the kitchen table in the dark. I tried to reason with him, saying it wasn’t time for breakfast. Agitated, he tried to tip over the table and would have succeeded, except the home had an unusually huge and heavy one.
When he calmed down a bit, I brought him a bowl of his favorite cereal with milk. He finished and sat in his rocking chair in the living room, still angry. I kept him company while I wrote out the required incident reports.
Next: A Difficult Decision!
(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
January of 2005 started calm and cold. I bundled up to walk to my personal care assistant job six mornings a week along with second shift at the Harvard Coop bookstore five days a week, seven hours a day. During my evening shifts, I rode an ancient elevator to the cavernous basement storeroom when customers requested specific sizes not on display. Mice darted in and out of the shadows. It bothered me that the storeroom was always a mess — and it wasn’t my job to fix it. I obviously inherited my dad's precise organization. I sometimes had dreams of searching for something important among never-ending boxes in chaos.
The day of Beth’s last final exam, a classmate pushed her through rising snow to and from the test. The snowfall shifted to a winter storm, burying sidewalks and cars. The worst of the blizzard hit on a Sunday. A snow emergency. Unearthing the car was not possible. Besides, there was nowhere to go. Ellsworth Avenue had endless drifts much too high to drive through. Everything closed, including the Coop, but I was scheduled to scribe for a final exam.
The blizzard set records for New England, and not in a good way.
When I couldn’t reach anyone by phone, I decided to walk to the Quad for the test, scheduled at the same dorm where the student with cerebral palsy lived. I also wanted to check on my snowbound daughter.
I layered my clothes and added an extra pair of socks. The first person in my apartment building to try to leave, I worked for several minutes to free the frozen front door. Next, I fought with the icy snowdrift forming a barricade on the porch side. I could barely squeeze out. The porch floor, steps, and sidewalks disappeared in an ocean of white.
Frigid blasts blew my breath away.
I waded through thigh-high drifts on Ellsworth to Broadway. An attempt had been made to clear the bigger street, making my ankle boots briefly useful. I walked in the road around abandoned cars, even though I couldn’t begin to hear a vehicle approaching with the wind. The few cars on the ice-covered street drove slowly.
I advanced half a block and turned back, ready to give up, when a lady in a van offered me a ride. She headed north on Mass Ave and told me she had never picked up anyone before.
It was a first for me, too.
Next: Blizzard, Part 2!
(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)
Through the disability services office, I accepted a third part-time job as a scribe for a Harvard senior with cerebral palsy. I typed while he spoke for a practice session, then the real thing for his essay tests and final exams. My typed words appeared on a large wall screen for the student to read. The young man impressed me and I learned about different subjects as I typed. Unfortunately, it was only a few hours each semester.
The job paid more per hour than my other two combined and I liked it the best.
The frigid months brought unwelcome lessons for Beth and me. In Ohio, I very rarely bothered with a scarf, hat, or mittens, but then I never walked long distances in winter. In Massachusetts, I bundled in layers for my early morning walks to the Quad. When new snow fell overnight, it transformed Cambridge to something clean and bright—at least for a little while. I appreciated the beauty of Cambridge even with dirty piles the plows left behind. The towers and steeples of timeworn buildings shimmered with dustings of snow.
After her injury in Ohio, Beth had limited her wheeling in the winter from buildings to or from a nearby car, with little exposure to the weather.
However, Harvard required extensive wheeling outdoors where even a light snow made pushing her chair difficult. No vehicles were allowed in Harvard Yard where Beth lived in the freshman dorm farthest away from the closest shuttle stop in Harvard Square. Health insurance usually paid for a motorized wheelchair for quads and I encouraged her to order one to use only in bad weather. Or special wheels with motors to fit her manual chair. She refused. Rakhi and I offered to push her to class or to the shuttle stop. Stubborn, Beth told us she’d ask only if the snow rose too high to wheel through.
We learned the hard way how even a small amount of snow and ice could be dangerous for a quad in a manual chair.
One bitter day in early December, Beth rode the shuttle from the pool to the bus drop-off in Harvard Square. From there, she wheeled across the Yard to her dorm. The six-minute walk doubled to twelve with light snow on the ground. Despite wearing wheelchair gloves, she ended up with white, numb, and hurting fingers.
Whenever Beth had pain in her trunk, arms, or hands—all areas with less than normal sensation—it signaled a serious problem. I pushed her to the student medical center, where a doctor treated mild frostbite in her fingers and suggested better gloves. Not an easy solution for a quad. Beth preferred gloves with open individual digits to get a better grip on the chair’s big wheels. They exposed her fingers to the cold and required a considerable amount of time to put on. Regular snow gloves or mittens soaked up moisture from the wheel rims. Bulky gloves that kept her hands completely warm and dry, interfered with wheeling.
I purchased new pairs of each kind anyway.
Next: Christmas in the City!
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