The Boston Home- Anne's Story

By Anne Betschart

I was born in October 1961, joining my two sisters Kathy and Susan. The only unusual event of my birth was that a few hours after my arrival, my cousin Teddy was born in the same maternity ward. My parents had just purchased a new home in the town of Natick. We were the American dream. Happily married couple, children, home in the suburbs…success!

In the months that followed, Mom and Dad noticed I wasn’t hitting the normal milestones of infancy. Sitting, rolling, and crawling were proving to be very difficult for me. After evaluation and testing, I was diagnosed with cerebral palsy. My case appeared to be hemiplegia, affecting only my left side. As an adult, I would explain my disability as follows:

Cerebral Palsy is an injury, not a disease. It is caused by a lack of oxygen to the brain, often during your own birth. Like a stroke, the amount of damage varies. Since my diagnosis came well into my first year, the cause remains unknown.

My case is reasonably mild--a weak left side with poor motor skills. 

Cognition, speech, and right-sided motor skills are considered normal. As a girl, the outward signs of my disability were a significant limp and a left foot that turned inward. I wore an uncomfortable brace in an attempt to correct it. Even as a child, this shoe-obsessed girl recognized the cruelty of not having cute shoes! Every evening, Dad would help stretch out my spastic leg and foot muscles. It was a practice I both loved and hated. Loved because I had private time with Dad, hated because he had to work hard to get those stiff muscles to loosen up. 

So, there we were. Dad sitting in his comfy chair, smoking a Viceroy cigarette, me sitting on the floor with my leg extended, getting the 1960s version of home physical therapy. Dad was my hero. A pillar of strength who was so devoted to his wife and children. The best version of a girl dad that ever existed! During this time, my parents welcomed 4 more daughters to our family. 18 months after my birth, Kristin was born. A year after that, twins Maureen and Jean. A few years later, Colleen rounded out our house of little women.

The twins were born with Down Syndrome and in very poor health. They had severe cardiac issues and were too ill to live at home. We lost Jean at age 1. Maureen passed away at age 4. 

My parents had to experience crushing grief while also raising five daughters, one with a significant disability. I was too young to understand, but it must have felt unbearable for them

We resume life as a family of 7. 

Daily, my sisters and I would get up, eat breakfast, and join our friends and neighbors on the walk to Brown School. I enjoyed school until the name-calling started in first grade, beginning with “Peg Leg” and later turning to “Gimp,” muttered to me as kids passed me in the hallways. I pretended I didn’t hear. Day after day, year after year, these painful comments eroded my self-esteem and confidence. I tried to talk with my parents about it, but they would tell me that I was fine and could be just like everyone else. “Just ignore it” was their advice. My concerns were unheard, so I stopped trying to express them. My insecurities grew and festered and are still part of my personality today. 

My parents had the best of intentions. They always included me, but things had to be modified.

 I remember a cold winter day when we went to Uncle Paul’s home on the lake. The whole family bundled up for a day of skating. I was told that I could join everyone on the ice, but skates would not be allowed. “Put your boots on and watch.” I felt so left out. My sisters looked so free and beautiful, gliding around the ice. It triggered a thought that I carry to this day. I will never be graceful. Things will never feel carefree and easy. It crushed me.

In 5th grade, students could select an instrument with hopes of joining the concert band. I was excited. Big sister Kathy could sing, and Susan excelled on her flute. What would my talent be? My parents had the difficult task of telling me that my options were few because of the limited use of my left hand. Dad had a great idea. As a child, he was stricken with polio. After a lengthy hospital stay, he needed to improve his lung strength. He used a trumpet to achieve that goal. He kept the instrument and realized it would be a successful option for me. My left arm was strong enough to hold the trumpet and the fingers on my stronger right side could easily press the three valves. 

So, I took my hand-me-down trumpet and had enough lessons to become a band member. Eager 5th-grade musicians joining our 6th-grade peers was a thrill. I saw all the girls sitting together with their shiny new flutes and clarinets. I was tucked into the 2nd row of trumpets, the only girl with boys sitting in front of, beside and behind me. The same boys who teased me in the classroom now had their victim surrounded on all sides. I wanted to quit, but we had a rule in our house. We had to honor our commitments. So, I played in the band for the remainder of the year, but stopped after that, never playing an instrument again. 

A few years later I was not able to take the required typing class. Lack of fine motor skills prevented it. 

My frustration with school continued. In high school, I realized a clever trick. I would use my disability to convince my gym teacher that physical education was hard. I was rewarded with a free period! Yes, I manipulated, but it saved me the embarrassment of everyone seeing the clumsy uncoordinated girl who would never be good at sports.

Mom and Dad recognized that I was emotionally lost. They told me that they felt like a smaller school might give me a fresh start. Entering my junior year, I relocated to a small catholic school one town over.  I made a few friends. They would pick me up and we would loaf around with little purpose or motivation. We would disregard curfew, sneak cigarettes and booze. This circle of friends provided something I desperately craved. Acceptance. I didn’t have to compete with my smart, graceful talented sisters. I didn’t have to be an onlooker of the cool kids in school who dismissed me as Gimp. 

Fortunately, I survived those tumultuous years. My teenage troubles never escalated to real danger, just enough to infuriate and frustrate my parents.

In 1979, I graduated from high school and was accepted to Framingham State College, but only lasted one semester. School was so traumatic for me. I wanted to leave that behind and join the adult world. My next step was to become a bank teller. It was a respectable job, and I was good at it.

Within a few years I was married and expecting our first child. My childhood home of little women morphed into the home of My Three Sons. Raising the boys was my purpose. My reason for living. Their well-being was my one and only concern. These active children kept me busy and focused. I rarely thought about my cerebral palsy. When they were young, I ran a home daycare. As they grew, I took a job as an administrative assistant at our local high school. My children attended this school. I feared that my bully names might resurface. Would my boys be known as Gimps kids? To my relief and delight, the name that stuck was “Mama Betzz”. My name was now a term of endearment!

My active boys kept our family busy for 20 years. Unknown to the kids, trouble was brewing in my marriage. Neither of us had the desire to fight for it. With two kids in college and one in high school, Doug and I agreed to separate. I would spend my free time working out and “walking off” my divorce. My body and psyche felt strong and renewed.  

Time passed and in my late 40’s I started to experience groin pain. Forty-nine years of walking with a limp had wreaked havoc on my left hip joint. I needed a hip replacement. On a warm April day in 2013, new titanium hardware replaced my overworked bones. After 6 weeks of recovery and physical therapy, I returned to work healthy and refreshed. This renewal would be short-lived. 

While sitting at work one day, I noticed that my right leg felt numb and when I walked, I needed the bookshelves to support me. A few days later, I reported for my duty as site manager for a varsity soccer game. For years, I would grab my folding chair and binder and oversee high school athletics. This girl who could never participate in sports was tasked with overseeing our young athletes as they competed in theirs. Still numb, I struggled getting on and off the field. After several weeks of this, alarm bells were ringing in my head. 

Over the next two years, I would fall three times at work. The numbness was constant. It was also becoming difficult for me to lift my leg into my car. I contacted the surgeon who did my hip replacement. He quickly scheduled an appointment and x-rays. He told me that my surgery and follow-up exams indicated no signs of complications. He referred me to a neurologist. This would trigger a merry-go-round of doctors and diagnoses. Here’s a sample:

Neurologist #1:

The MRI indicates that you have lesions, but they look old. Most likely related to your CP. I believe you are suffering from a pinched nerve. Probably the result of a different walking gait after the hip replacement. I’m sending you for physical therapy and to a physiatrist (a physiatrist? This is the first time I’ve heard this term).

Physiatrist:

No, it doesn’t look like a pinched nerve. It’s obvious to me that you have cerebral palsy on your right side. She’s not particularly interested when I say that these are new symptoms. In my 50+ years on Earth, no one has ever suspected CP on my right side. She prescribes baclofen and 6 more weeks of physical therapy. She also advises me to put a one-inch lift on my left shoe to compensate for leg length discrepancy. I disagree with her assessment but adhere to her advice. 

The year is now 2014. My three sons are grown men. Michael is living in Rhode Island engaged to be married. Tommy lives in Florida and Christopher lives in South Carolina. In July, they meet to celebrate Michael’s bachelor party. They express serious concern when seeing first-hand how I am struggling. When they return in September for the wedding, their concern elevates to alarm.  I am supposed to walk myself down the aisle as part of the wedding party, but during the rehearsal, as I begin the march, it becomes clear to everyone that I am unable to do so with no walls or cane to rely on. An immediate change is made. For stability, I have to forgo the cute new sandals I purchased for the occasion and wear my dirty sneakers instead. I plead with the photographer to make sure my feet are not visible in pictures, and I am grateful that I chose to wear a full-length dress to hide them. My two sons, the best men, walk on either side of me. They offer their arms to me, and I hang on for dear life. I am so very sad but try to hide it because this is the happiest day of Michael's life. 

As the mother of the groom, I was looking forward to sharing a dance with Michael. He had asked me to select the song. I chose “My Wish” by Rascal Flatts. He escorts me to the dance floor. We begin, simply swaying to the beat as he holds me up. It is a tender moment tainted by the stark realization that something is seriously wrong. Fear and devastation wash over me. Both Tommy and Chris decide to move back to Massachusetts, recognizing that I need care. This decision brings all three of my children close to home. They become an integral part of my support system.

As the year winds down, my right leg continues to feel numb and that sensation spreads to my abdomen. Walking is getting more difficult. I rely on a quad cane for support. After work, I struggle to get to my car. Once there, I need to hoist my right leg into the vehicle. The spasticity fights me. I tie a scarf around my thigh to use as a hoist. One day, on the road, I realize I can’t safely move my right leg from the gas pedal to the brake. Driving is no longer safe. I have no diagnosis and an uncertain future. I am terrified. As a single woman, my job is essential for my finances. I request a leave of absence and am pleased to learn that I have amassed enough sick time to afford several paid months off. On New Year’s Day 2015, I woke up with a high fever and flu-like symptoms. I try to stand and move. It’s an impossible feat. Home alone and terrified, I reach out to a neighbor. She comes over and waits with me for an ambulance.

An MRI reveals new lesions. Finally, years after my first symptom, I have a diagnosis. I have multiple sclerosis. 

MS appears to have attacked my right leg only. It feels like a cruel twist of fate that I have dual disabilities on opposite sides of my body. The symptoms compete for my attention. I struggle with strong spasms. The ones on my left CP side cause my muscles to recoil. The ones on my right MS side cause my leg to straighten and stiffen to the point of pain. I grow more and more dependent on a wheelchair.  Remember that left hand that couldn’t play an instrument or type? It also lacks the strength needed to propel me in the manual chair. Eventually, my doctor convinced me to get a power wheelchair. It breaks my heart but provides much-needed independence. I get by.

The pandemic shifted the balance. It became impossible to find help, and I was isolated, unable to care for myself. My family was very worried.  My neurologist suggested that I look into admission at The Boston Home. This idea overwhelmed me. I could not imagine leaving behind the familiarity of my chosen hometown. Needing the care of a skilled nursing facility left me feeling defeated. Next came a hard-to-hear, tough love conversation with my son. He told me that my loved ones were very worried about me and did not think I should live on my own. This was difficult to hear, but I appreciated his honesty. Begrudgingly, I applied, expecting to be placed on a lengthy waitlist. To my surprise, there was an immediate opening. On a warm August day in 2022, I became a Boston Home resident.  

Now this girl from the suburbs is learning to be a city girl. I have friends here who encourage me to hop on the “T” and explore the wonderful culture around us. I have a dual disability and dual emotions. I allow myself to feel sorrow for what has been a lifetime of challenges. I don’t know if it will ever feel completely comfortable living in a skilled nursing facility. I dream of a time when I can return to independence. If that day never comes, I will find joy in new experiences. I celebrate my incredible support system. My Mom and sisters are constant cheerleaders. A few of them join me for lunch once a month after my infusion. My boys visit me often. A tremendous joy has been watching them all become Dads. My family has grown to include 3 loving daughters-in-law and 4 grandchildren.  Life is good!