The Boston Home- Margaret's Story
By Margaret Marie
I was born to teenage parents in Brookline back in 1956. My mother dropped out of high school, my father joined the Marines for two years, then got a job as a police officer. Soon after, another baby was on the way. Neither of my parents were prepared for parenting, adult responsibilities, or marriage.
My little sister Brenda was always at my side until I went to kindergarten. I was called “Peggy” back then, and kids teased me, calling me “Eggy.” When I walked home from school, neighborhood boys threatened to kill me if I walked by their house. I didn’t tell my parents. I figured they would tell me to go and fight them. I’d never fought anyone and didn’t want to. Instead, I walked home singing at the top of my lungs, hoping I would be discovered, and whisked off to Hollywood. My defiant, booming singing continued until I discovered the library. There I found refuge from the neighborhood tyrants and befriended the children’s section of books arranged from A to Z with stories and adventures that were a welcome antidote to peril. Oh, how I loved reading stories that took me to wonderful places again and again.
Throughout elementary school, I remember my parents always arguing. My father drank, some, then a lot. When he got in from work at midnight, he brought his work buddies home, and they’d drink and play cards till early morning. My mother looked wicked mad and sometimes scared. Brenda and I would hide in our bedroom, trying to block our ears. He had a dark side, which gave me the creeps. That he had a weapon locked up in the house wasn’t lost on any of us. My mom, Brenda, and I were silent about the impacts my father had on us. By twelve, I believed it was up to me to manage my father and protect Brenda. It took me ten years to be able to speak of this to anyone.
Suffice it to say that my teenage years were crummy. My mother and I didn’t get along much. I couldn’t wait to go to college, though I knew I was on my own to make this happen. It was a long time before I felt any compassion for my mother’s circumstances or my own.
When I left for college, I majored in philosophy & read voraciously. I was very shy and quiet. I lived by the “two ears, one mouth equation” and am temperamentally a better listener than speaker. I was fortunate to find my first people - my kin - through friendships with Owen, Steven, and Michele. We shared a house on the ocean in Winthrop after graduation.
I soon began working in community mental health when they were emptying state psychiatric hospitals. In my first job, I was the weekend live-in counselor at a group home in Newton. After a year, weary of weekend work, I got a job as a group home director in Dorchester (just 2.5 miles from The Boston Home). Nancy hired me, but wasn’t my boss, and we became fast friends. I felt I was on the threshold of a new beginning. It was a time when people in the mental health field were encouraged to go into therapy. Like many coworkers I respected, I went into both individual and group treatments. This wasn’t an easy journey, as I had a lot of issues to unpack. For several years, I navigated the emotional and physical tsunami of therapies, finding that underneath this stormy edge, lurked waves of terror and sadness. I continued to learn much through reading, work, and eventual social work school. Slowly the payoffs came, and I felt an emerging maturity and self-knowledge. How great - to trust myself more.
After graduate school, I enrolled in a yearlong learning program with seasonal weekend retreats led by a remarkable Buddhist woman. It was so enriching! Through meditation, readings, journaling, my personal spiritual inquiry was taking flight. I felt nascent stirrings of me as wiser as I stretched my personal comfort zone. I felt stronger all around. Before, I felt like I was a product of my past experiences, and never imagined I could have internal peace and quiet. This was a major breakthrough, as I confidently began to embrace my own choices for how I would respond to life’s ups and downs.
In the meanwhile, Nancy and I had lived together in Cambridge as friends when we were both at Bay Cove. We got involved in relationships with other women, and I moved to Vermont and later Jamaica Plain (JP) with my partner. These relationships both soured over time. I settled in a studio apartment in Somerville, and Nancy and I became involved. Soon, we moved to JP to be closer to public transportation and Simmons School for Social Work. Eventually, we adopted our first dog, Sam, and life was good overall. I loved heading to the beach on days off and bicycling along the Emerald Necklace weekend mornings. We treasured spending time with friends over dinner and enriching conversation. After Christmas, we’d head to P’town for a week, shake away the leftover holiday season detritus, and spend much desired time together. Bundled up in winter gear, we’d go for long evening walks, en route to and from Napi’s or Ciro & Sal’s for a luscious dinner, after reading the day away. We both were in good health and had work we were committed to. Life was good.
Fast forward……
I was 40 when I was diagnosed with MS. I had foot drop, trouble walking, and fatigue. When I saw my first neurologist and described the symptoms, he performed a basic exam: walking toe to heel; holding up each limb as he pushed against them; having my eyes follow his fingers; reaching my arms out far and touching my nose. I felt awkward, self-conscious, clumsy. His staff scheduled me for an MRI and evoked potential testing. At my 2nd appointment, I learned that I had Primary Progressive MS. While I'd heard of MS - I didn't know much of anything about it. I was fortunate to have this doctor, as he was earnest to learn of my interests. There were limited treatment options at the time. He was very honest that the research on the available medication options thus far couldn't demonstrate efficacy, but we did try them out, one by one. They didn't bring me any benefit. We met twice yearly to check in and traded books of Japanese literature. I appreciated his respectful kindness.
Over the next six years, my ability to walk deteriorated and I needed to rely on a cane, then a walker, and eventually a scooter. Each change was an adjustment, but I appreciated that they were necessary for me to retain my independence and safety. I applied to the Mass Rehabilitation Commission for support to enable me to continue working. They paid for an outdoor lift to be installed in our backyard, so I could get in and out of our house safely. The Greater New England MS Society generously helped me with a grant that paid for our small bathroom to be made into an accessible wet room. Their assistance was invaluable.
It was tougher to deal with the fatigue and weakness, as they seemed to come on quickly. I had always loved spending time outdoors in the sun, but it became treacherous in short order. I had been working as a social worker at Beverly Hospital on their adult inpatient psychiatric service for two years when I realized I could no longer work full time. I changed to part-time, worked out a job share, but eventually had to leave altogether when I could no longer drive.
I think that my attitude about having MS has been informed by all the work I did in therapy, building a spiritual practice, the chosen family I built over time, and how I learned to live intentionally. I was committed to focusing on living each day fully and actively and choosing to keep company with positivity and possibility. I was determined to not have MS define who I am and was open to allowing a bit of denial to help me along. Also, I had worked with adults with Serious Mental Illness for 24 years as a Crisis Clinician, in several psychiatric inpatient units, and at Bridgewater State Hospital. I knew that many people live with extensive suffering. My experiences were not of this magnitude by any measure. I remain humbled by what I learned about despair and courage from these adults and their families. Collectively, these lessons have served me well in my journey with chronic illness and disability.
Perhaps most importantly, back then and now, Nancy is “my person” and I am hers. We have had and continue to share great love. And, in our early 40s, we decided to expand our family! Yes, we were pleased to join forces with the Department of Children & Families (DCF) to welcome and adopt a child.
Nancy and I were both 46, when our daughter, Dorothy, then seven, moved in. We were so happy to welcome her to our home! She brought us joy, all the worries new parents have, and such richness. Until she learned to rollerblade and ride a two-wheeler, she loved riding down the street on the back of my electric wheelchair. She also loved waking me up in the middle of the night by knocking on my head. It’s hard to be a scared little girl in a new home, on the heels of several foster homes. I was so glad she was knocking on my head for support and to be one of her two newly devoted moms.
I had many medical concerns and crises over the years, but I considered them to be mere “blips:” something occurred that was like a sucker punch - I was knocked down, wiped out, often requiring intensive care - but I bounced back, ready to move forward with living. I did get seriously ill in 2004 and it was a colossal blip. June 5th was to be our wedding day and in the darkness of 2 a.m., Nancy awoke to find me feverish and unable to communicate. The ambulance took us to the Faulkner ED and later a lumbar puncture revealed I had meningitis. Nancy and her sister Terry made calls to friends and family, as I transitioned from acute to critical status. Nancy later described that they were called into a triage room, with a large team of doctors working on me, asking if I would want a priest and/or resuscitation if my heart stopped. I have no memory of this, or that our friend Chris, the designated officiant of the day, joined us later that day and performed an abbreviated bedside service. Reportedly, I muttered yes and we were married, while the medical team enjoyed the top tier of our wedding cake lovingly baked by Nancy’s nieces. Following a week on a medical unit being treated for meningitis and a raging cellulitis infection, I was transferred to a rehab unit at a neighborhood nursing home. I had declined significantly and we needed to set up more supports at home. Two years later, I moved into The Boston Home.
I wanted to come to The Boston Home (TBH) before I became a burden to my family. When Nancy and I took a tour of TBH, I smiled throughout the entire visit. There was so much space, the building and grounds were beautiful, and it was a place where people we met seemed to be thriving. I loved the variety of activities and how family members were always welcome. It seemed like a place that could offer me more assistance, resources, and a community. Nancy held back tears throughout the tour, saddened to imagine life in our home without me. She saw only loss - I saw opportunities.
It seems unbelievable to me that I have lived at TBH for 18 years now. I was so blessed to have Donna Corbett as my first roommate here, and every day I think of her friendship with a smile. I have grown to love this community wholeheartedly and have been able to live with much richness and joy here. The residents and staff together make this place unique, and my family and I are grateful that Dorothy has grown up loving to come here and enjoy the many best friends she has made over the years. At TBH, I learned to cherish watercolor, to love karaoke, and have shared sacred times in abundance here - with family and friends. How fortunate I am to have witnessed the bravery and dedication of the team throughout the pandemic years and was so pleased to reunite with beloved friends here when isolation restrictions eased.
In October 2022, I had aspiration pneumonia and spent two days in the Emergency Department at MGH and because there were no beds, was transferred to the ED at MGH Brigham where they had no beds. After I had another aspiration in the Brigham ED, I was in acute respiratory failure on 40 liters of Oxygen. They had a vent at the ready. I learned from Nancy that I got great care from one of the ICU doctors and head of Pulmonology, until a bed became available. I recall excruciating pain when they worked to get an ABG (arterial blood gas) but remember nothing else throughout my stay at either hospital. Nancy, my medical providers, and our family were pretty worried. Since I didn’t remember any of this, I stubbornly wanted to ignore their concerns – as if they were inadmissible hearsay. I had bounced back.
This most recent winter was the first time I ever felt completely overwhelmed and afraid when I became ill. While I have had a wealth of MS related challenges, at 67 years old my ways of coping with its exigencies were no longer available to me. I was having episodes of confusion and disorientation, and my brain wasn’t functioning well. Then in April, I got sick fast and it cascaded into acute sepsis and delirium. I was in the Carney ED and had to be transferred to MGH for a surgical stent placement due to a belligerent kidney stone. After three days at MGH, I was sent home, arriving here with my Oxygen Saturation level at 50. Back to Carney’s ED, diagnosed with a pulmonary embolism and acute respiratory failure. I was sent to the ICU for a week. Nursing staff repositioned me there, and pain exploded, as my upper arm fractured in two. (Advanced MS + functional quadriplegia = severe osteoporosis) - AKA “shit happens.” While I learned later that Nancy was with me throughout these days, all I remember is nightmares and fear reminiscent of Dante’s circles of hell. Eventually I came out of this precarious state and will forever be grateful for the kindness and expertise of Carney’s ED and ICU teams.
I may not get the chemistry of the respiratory system in chaos but have come to believe others when they say that hypoxia and CO2 narcosis can result in disorientation, paranoia, delirium, confusion, and nausea.
My mind defies me as my once comfy room has been altered; there are spies all about; I am unsafe. Later, I am sequestered on the ground floor with 20 other TBH residents. There is darkness and risk; Nancy + Dorothy are on their way. I can't trust anyone. I am surrounded by familiar people; but I am isolated. I feel kin to the elder Inuit women who in times of scarcity were pushed out to treacherous Artic waters to die on their solo ice floe.
I have had multiple surgeries—for breast cancers, tumors, a volleyball of a fibroid, a tear in my spinal cord, etc. and survived them well. I have had multiple admissions to ICUs at Carney and MGH. I've had an abundance of medical specialists, pic lines, transfusions, medications and chemo. I’m well known to the Infectious Disease team at MGH. The Carney ED saved me from death five times. MGH and Brigham and Women's have similarly brought such life-saving expertise. The TBH staff have heroically cared for me through innumerable times of critical need. We stopped counting a long time ago. My family and friends describe me like a cat with 29 lives, instead of nine.
I am weary of the ways in which our complex health care system is cumbersome, inefficient, and ineffective. When I received care for sepsis and pneumonia in a local hospital’s ED, ICU, and medical unit earlier this September, I had a different doctor every day and night. They didn’t seem to share much communication with each other, and some didn’t communicate directly with me. It took three days for them to get me the correct meds for spasms and neuropathy pain. I was in a new mattress with reportedly “great technology” that used warm heat and a loud fan to keep the mattress particles in continual motion. It increased my body temperature, I was sweaty, uncomfortable, and too weak to move my one hand that still has a bit of functioning. The heat triggered painful spasms in my left leg. They wouldn’t turn it off when I asked them to, given concerns of further skin breakdown.
I wanted to give up then. I felt so disrespected, dehumanized, and demoralized. I don’t think many people can imagine what it is like to be alone and unable to move any part of one’s body – not even to move one finger one inch to reach an accessible call light. I called Nancy sobbing. She returned to the hospital, reminded the staff I had the right to refuse the high-tech mattress treatment that was making me worse, acknowledged our awareness of the risks, and unplugged the mattress. She then brought cool facecloths to my head, face, neck, arms, and hands, settled into a chair at the side of my bed for the night, played old favorite songs on YouTube, and we sang and shared stories through the night. I chose “Don’t Rain on My Parade” to become my new theme song. In the morning, realizing it was a tough song to sing, I switched to “Oh What a Beautiful Morning” to sing aloud and restore me to my calmer self. I hereby elect to return to past lessons to live each day I have more fully and positively.
Here is my commitment list for myself going forward:
I’ve decided to pay attention to the helpers and loved ones I trust, including myself.
Recognizing how helpful it is, I will use my BiPAP machine as faithfully as I can.
I’ve begun listening to Pema Chodron’s most recent book, How We Live is How We Die.
I’m exploring finding a Spiritual Mentor.
I am relishing listening to great music every single day.
I look forward to meeting our family’s new puppy next week. Her name is Daisy Mari. We already love her. We look forward to sharing her with all who shimmer in the presence of a dog’s sweet love and spirit.
I will do my best to keep my heart open, spread kindness, and continue to count my blessings each day.