The Boston Home- EDC

By EDC

I was born in the early 1960s in the South and that is where my migration up the East coast began. My parents and I moved to Baltimore, where my brother was born when I was three-years-old. In 1971, just before I entered 4th grade, we moved to Winchester, Massachusetts.  I looked forward to living closer to our extended family, especially our four cousins.

In my childhood, I had good friends and good health. While I was mainly focused on academics, I also enjoyed many activities, such as tennis, ice-skating, varsity track and cross country and hikes in the White Mountains. I attended Wellesley College and junior year I spent at Dartmouth College.  On Wellesley’s beautiful campus, I participated in dorm crew on Lake Waban, whereas, at Dartmouth in NH, I enjoyed river tubing and cross-country skiing.

In June, 1984, I was a 22-year-old college graduate. I was fortunate enough to have the opportunity to visit Europe with my cousin Ted. That was a gift in multiple ways from my mother, remarkable given that she was a single mother. We were both novice travelers guided by the book Let’s Go, Europe! We saw 8 countries in 8 weeks, including England, France, Switzerland, Italy and Greece. All we needed was our EuRail passes, youth hostels and directions to American Express offices to exchange currencies in each country. (This was well before the Euro).  

I remember vividly standing with Ted in London in a classic red phone booth. We wanted to let our families know that we had arrived safely. Wearing our gray soft frameless backpacks with a bunch of English coins in hand, we tried multiple combinations of coins before we found the ones that worked. Success!

Memorable highlights included Grindelwald, a small village nestled in the Swiss Alps where we hiked through meadows and viewed snowy peaks. In contrast, Ted and I also explored the black sand beaches of Santorini, climbing on donkeys to reach our blue-domed hostel.  This experience sparked my love of travel.

Upon returning home from this amazing trip, I faced some major life decisions. I decided to relocate to Washington DC. I wanted the experience of living in another international city. One of my college roommates had recommended Thompson-Markwood Hall, a Young Women’s Christian Home, which was right across from a Senate office building. I took her suggestion because it was a great location close to Union Station, the Supreme Court and Capitol.

There were two rules, no men in our rooms and no alcohol, which made us feel a little paranoid about whether we could even buy a bottle of wine as a hostess gift.  The hall felt like something between a boarding house and a dorm, and I made some good friends there.

Next came a position as a unit clerk in the medical ICU at The National Institutes of Health (NIH) Clinical Center, its research hospital. Three of the doctors provided me with their insights about their patients and the diseases they were treating. In trying to diagnose a patient’s illness based on symptoms, medical students learn “When you hear hoofbeats, think horses, not zebras.” At NIH, I was told to think of it as a safari.  Most of the diseases studied there were not found in the general population, such as the emergence of AIDS in the 1980s.  Those doctors became role models for me.

While working, I studied for the MCAT exam, and prepared applications for medical schools. Unexpectedly, I had my first unusual symptom. For 2 weeks, I experienced numbness in my entire right leg. It puzzled me, but I wasn’t too worried. A local primary care doctor recommended that I see a neurologist, but the numbness resolved prior to the appointment, so I canceled it.

Later that year, at my cousin Alicia’s wedding, I walked down the aisle as her maid of honor. It was the music that carried me along to the altar. Alicia is like an older sister to me and it was a joy and an honor to be part of her wedding.

Months later, I had another new symptom that was harder to ignore. My friend and I had just seen a movie and were waiting outside for a taxi, when suddenly I was seeing her face in double vision. Even though it only lasted ten minutes, it was disconcerting during that time.

When I eventually did see a neurologist, he advised me to check into his hospital for a workup. He was calm, but he made it clear that it did require immediate attention. I decided to fly home to Boston for my work-up. I had a head CT, but the results were “inconclusive.” It was 1986 and MRI was not yet available as a diagnostic test.

As part of my work-up, the doctor privately questioned my mother about whether I might be a hypochondriac.  My mother emphatically answered that I had no pattern of feigning symptoms or even exaggerating illness. It bothered me that I was not being taken seriously, but Mum had squelched this supposition.

Although this experience was upsetting, I was not disillusioned about entering the medical field. I compartmentalized the experience.

While these were lessons in what I did not want to do in my own practice, I also had met some excellent clinical doctors whom I did want to emulate, especially their knowledge, compassion, and dedication.

In August, I was accepted to Albany Medical College. My mother’s friend had brought me a giant teddy bear wearing scrubs as a congratulatory gift. As I boarded the plane, I waved with the teddy bear to my family. My triumphant moment—I’m on my way!

By the next weekend I had met Joan, an Albany Law School student who became one of my roommates, and, over time, a life-long friend. Gradually, I settled into the pace of med school, studying large volumes of detailed material, such as the Krebs cycle in Biochemistry and the entire body in Anatomy, followed by exams. My studying partner was Eileen, an ICU nurse who was working towards her MD. She was very helpful, and when she reached the clinical clerkships, she soared.

Now, I began experiencing coordination problems along with bladder urgency and found myself in a urologist’s office. The senior urologist commented to his resident about my markedly abnormal results. Already feeling vulnerable as I was lying there on the exam table, my thought was "we don't even know what this is and it's out of control." The doctor had spoken over me to his colleague as if I were not even there. At the follow-up visit, I told him that I wished that they would have conferred in a separate space, or at least spoken to me first. We agreed that I should find another doctor. My first self-advocacy!

Two months later, I had enough symptoms–foot drop,  lack of coordination, double vision again– for my Albany neurologist to recommend an inpatient stay right away for more testing. Now, I felt scared. My mother drove out with her fraternal twin sister, Karen, who is my godmother.

By now, brain MRI was available and a technician informed me that mine was abnormal. I began crying as I waited to return to my hospital room. I felt so alone. Back in my room, the neurologist explained that I had multiple sclerosis (MS). As my mother, aunt Karen and I huddled, hugged, and cried, Karen suddenly remarked that there must be an "evil genie" who caused my MS. It was so unexpected, and, yet, so like Karen, that it made us all laugh and cry simultaneously.

 At that time, in 1987, no therapies existed that specifically targeted MS. I had been worried that the testing might prove inconclusive again, but I was unprepared for the reality of getting a diagnosis for which there was no treatment. Through this, I learned the importance of having family and friends in trying moments in our lives, and that reality can be overwhelming.

I needed to figure out how to make my new reality work. The same doctor who wondered if I was a hypochondriac also told me that I had a “mild case” of MS. How could he know that? How could anyone? I was advised that most people can lead a normal life, “just try to alleviate stress and fatigue." Medical school? Residency? This was going to be challenging, but I didn't want to give up on my dreams. I stayed in school, with some modifications to my schedule. One of the deans was a neurologist who helped me troubleshoot issues with accommodations. This was before the Americans with Disabilities Act (ADA), passed in 1990.

Fortunately, I had a senior doctor on the faculty who had MS and used a wheelchair. He told me that for economic reasons, it would be important for me to finish my training. He said he had residents who could help him with physical tasks he couldn’t do himself, but he had knowledge and qualifications. He emphasized, “Do whatever you have to do to get that degree. Crawl for it” I agreed with him.

With help, I completed part of the second year curriculum with my original class, then completed the remaining portion with the class behind us, the class of 1991. To stay strong, I swam laps in the local community pool on a regular basis. At that point, the neurologist was classifying my MS as “relapsing, remitting,” but I required a cane two years after my diagnosis. The pacing of my medical school experience made a big difference in completing my studies.

On some occasions, I needed to take 1-2 weeks away from my clinical clerkships to receive IV steroids and rest. I recognized that a clinical residency was going to be too physically demanding. I chose pathology because it offered interesting study, career paths and did not require overnights.

I returned to NIH to begin their pathology program in July 1991. It was a four year residency. My internship year proved harder than I had imagined. At that point in my MS journey, I was using a cane, leg braces, and had a scooter to navigate my way around the hospital and campus. 

Even without overnight-call, the months on the surgical pathology service were exhausting. Although I came into work on the weekends, I still struggled to keep up with the workload. By March, I needed some extended rest and a friend drove me back to Boston. At the same time, I also began to realize that pathology wasn’t my calling for my medical career, my passion for choosing medicine. So, I decided to do some research in my own department while I considered other options.

I decided to apply to masters in public health (MPH) programs to work with different patient populations, rather than aiming for a clinical practice of one-to-one patient care. I landed at the Johns Hopkins School of Public Health, where I gained alternative expertise to pathology, but also had multiple courses which tied in to my past work at NCI. The usual part-time pace for the MPH degree was three years. In my case, while also working full-time, it took me five years.

In 1993, the year I started the MPH program part-time, the first FDA approved MS drug, Betaseron, came to market. Despite trying this and other subsequent MS medications, my symptoms continued to progress.

A decade earlier, at my cousin Alicia and her husband Tom’s wedding, I walked down the aisle as a bridesmaid unassisted.  When my brother Bob married his wife Christine, I relied upon two groomsmen to escort me. Alicia and Tom’s daughter Gen and Bob and Christine’s daughter Katie are my goddaughters. They both have Elizabeth as a middle name, which is special to me.

At this time, I returned to my strategy of managing my MS with exercise. I did a water therapy program at the local indoor pool, went to see a physical therapist, and did therapeutic horseback riding, which was my favorite. Glenelg, where the farm was located, was an hour away, and I went early Sunday mornings to avoid the heat. The solitude and the scenery of the drive itself was therapeutic. The horse’s name was Grumpy. I loved that the equine therapist would take me along a trail that went over a little brook and through some trees. I could never have navigated that terrain on my own.

I graduated with my MPH degree in 1998. 2000 was an important year for me, a liberating one. I began using my first power wheelchair and acquired a new adapted van, which I could drive independently. Whereas I walked short distances with my rollator rolling walker – hand brakes and built-in seat – suddenly my powerchair made almost all my tasks of daily life, including fun (going to the movies or meeting a friend) much easier. 

In 2002, I relocated to Boston to work at Dana-Farber Cancer Institute in the Zakim Center for Integrative Therapies and Healthy Living. I had my van and wheelchair driven to Cambridge. The center has offered acupuncture, massage, nutrition counseling, and other therapies to help patients manage cancer related symptoms such as pain, fatigue, and nausea.

As a public health educator at the Zakim Center, I was providing cancer patients and oncologists with available findings on the purported therapeutic uses of herbs and supplements. Relaxation and stress reduction continue to be goals of the center’s work, too.

In my own life, I found that massage therapy and acupuncture provided relaxation and increased my energy after each session. I tried modified yoga, qi gong, and meditation.

As we did acupuncture research at the Zakim Center, in 2008 we went to Shanghai for a conference with our Chinese counterparts.  I had traveled to several West coast conferences in the past without difficulty.  My desire to experience this fascinating country was immediate, but I realized I would need assistance, which aunt Karen was happy to provide. I could not have managed the 15 hour flight or many logistics at the hotel and destinations without her help and companionship. During our two-week stay, I did not see another Westerner in a wheelchair.

After my meeting, we took a flight to Beijing. We hired a guide named King, a Korean man who spoke fluent Mandarin. When needed, he would physically carry my manual chair up stairs.

I had learned there was a section of the Great Wall that we could access via cable car. When our cable car arrived, King disassembled my manual chair quickly. Karen and I faced forward as the cable car ascended to the Great Wall, while King rode backwards with the chair. By going in the morning, we missed the heat of the day. When we reached the top after our short ascent, King nimbly reassembled my wheelchair. I am so glad we took the time to see this wonder of the world. 

As part of the trip, we visited the Forbidden City. Among the vast sea of people were some Chinese team members for the upcoming Paralympic games that summer. I would not have expected that four years later, I would be sitting in a London stadium with my cousin Ted watching an evening of track and field at the Paralympics.

By that time, Ted, the same cousin who was my co-adventurer after college, had been living in England for over 20 years and was a dual American-British citizen. Ted arranged for me to stay in an accessible room at Queens College, Oxford University. He served as my driver and custom tour guide. Ted rented a scooter so that I could explore the historic part of the city independently, then I switched to my manual wheelchair in London to navigate the crowds at the Paralympics. I cheered for the athletes from all the countries, admiring both their athleticism and ability to adapt to their sport, such as doing the high jump with one leg. What impressed me about the British crowd is how enthusiastically they cheered for all the winners.

On my flight home, it amused me when someone asked me if I had competed in the Paralympics. It was only at that time of my life that I began to strongly connect with people with disabilities, both on volunteer committees and as friends. It was a relief not to have to explain about the challenges of getting around, equipment problems, and some positives about problem solving skills, being resourceful and enjoying social get-togethers.

In 2013, a friend told me about sessions held at Tufts University School of Medicine for students in the Family Medicine clerkship to learn about patients with disabilities. In this setting, students performed a practice interview with people who had either a physical disability or were on the autism spectrum. The students enjoy that we incorporate aspects of our real diagnosis and lives into the standard, role-play interview.

I use this as an opportunity to advise students that people with disabilities often are knowledgeable about their own conditions and, in many cases, lead full lives (employment, relationships, other interests). I continue to participate in this exercise and mentor students both as a patient and as a retired Family Medicine faculty member.

I also have worked on cross-disability commissions or boards, both as a member and in some leadership positions. I remain actively interested in working on accessible transportation with the Riders’ Transportation Access Group (RTAG) with the MBTA.

In 2023, it was no longer sustainable to continue living in my Copley Square accessible apartment. I had come to The Boston Home seating clinic, but it was a very different experience to transition to my new home in August, 2023.

It was difficult at first. However, the benefits of living at TBH quickly became apparent. I realized to what extent my world had narrowed as I began connecting with a group of new friends and the strong sense of community. It’s been great to listen to live music right on-site, and I’ve joined a watercolor class, which has improved my ability to observe colors and patterns in the natural world.

Working with Laboure nursing students I provide them with some tips and instruct them about the effects of MS on my own body. For example, we discuss my baclofen pump and how well it keeps my spasticity under control.

These days, my travel extends to attending local performances and museums, as well as van trips to Southern New Hampshire and Cape Cod for special family celebrations. Fortuitously, my nieces, Katie, Chelsea, and Alli, live nearby in South Boston. In addition to my extended family, who come from Vermont, my cousin Rob and his wife Diane visit from closerby, North Attleboro. To my delight, visits to The Boston Home now include the next generation in my family, my cousin Alicia’s grandchildren. Lucky me!