The Boston Home- Maggie's Story

By Maggie

I was born December 2, 1954 in New Bedford Massachusetts, the 2nd child of Edward J. Harrington Jr. and Mary Madeleine (Faucher) Harrington. My parents had recently settled back to New Bedford - Ed’s hometown–after a stint in D.C. where he was assigned to the Pentagon as an attorney during the Korean conflict.

As anyone who knows about the 1950’s era knows, new mothers were kept in the hospital for about a week after giving birth. My mother wrote a note to a girlfriend soon after getting home telling her "Margaret's going to be a husky"!!!! and  also explained one day she was reaching into the fridge to get the baby a bottle - and collapsed. She was able to get over to a telephone and reached my father, who in turn called his mother and sister. Dad got my mother to the hospital where she was eventually diagnosed with a glioblastoma which is an extremely fast-growing fatal brain tumor–the type that Ted Kennedy and Sen. John McCain had.

My Dad brought her home (actually to my grandparent's house) for Christmas, where the one photo showed her very worn down and frail. I've been told she did not recognize 'the baby'...three-week old me. She went back to the hospital and died there February 2, 1955. I was exactly two months old.

After my mother’s death, my dad, sister and I moved permanently into his parent’s home. He was the oldest of 5 kids and there was plenty of room.  He still had 2 unmarried sisters (1-engaged,1 seriously dating) who lived at home, and his youngest brother was in high school.  It was a delightful and busy household, with a large yard with a huge flower garden full of roses and a swingset. My grandmother remarked to my older aunt that I was her last baby.  (I wonder if she handled getting up at night, and washing all the diapers…) But eventually I was walking and talking and trained with the best of them.  My grandmother was actually a graduate of Bridgewater State College ‘17 with a degree in education. He had 6 older sisters, but my grandmother was the only one who went to college. She taught first grade for years until she married. Married women weren’t allowed to teach back then. My grandfather was also an attorney and my dad shared an office with him:  Edward J. Harrington Sr. & Edward J. Harrington Jr.

Both my grandparents were from large Irish/English immigrant families and all of the siblings looked up to them as the smartest and most successful in their families. Still, my grandmother remained the youngest sister of many sisters and fell under their judgments her whole life (of course). After they married, my grandparents lived in a large house on a main street in New Bedford - a whaling captain’s home - the type with a cupola on the top meant to watch for the whaling ship’s return to the harbor.  This became my home. Both my grandparents were devout  Roman Catholics and our home was directly across the street to a Roman Catholic Church, St. Lawrence Church, with a Catholic elementary school, and a Catholic High School, both staffed by the Sisters of Mercy, on the same block.

The lack of my mother in the picture was handled very matter of factly.  It was said she was already living with God in heaven, and that was that.  On Memorial Day weekend, my Dad would take us to her grave and plant flowers and say a prayer.

About five years after my mother’s death, my Dad began dating again.  In 1960, I started 1st grade at the Catholic elementary school,- HFGS  making some friends I still have to this day.  St. Lawrence’s parish was a fairly large and successful parish, with many WWII vets who became MDs, DDS, etc. .  The diocese had us students involved in (what was at the time) a computer generated aptitude test.  The results were presented to the parents one evening.  They explained my class scored higher than any other class - and they displayed a graphic showing a 99%ile. I found out after the fact that it was MY 99%ile score that was displayed.  Please know that my first grade class was 26 kids each, doing mornings half the year and afternoons the other half.  Thus it meant 2nd grade was 26x2 = 52 kids in the class.  God bless those nuns!  We somehow survived, making First Communion in the Spring with very few dropouts.  My father got engaged and remarried the summer of July 1962.  The nuns dropped their big black habits the summer of ‘64. 

My sister and I went across the street everyday for lunch with Gramma & Grandpa.  One indelible day - a Friday, November 23,1963 was an ‘art’ day for my class, so a ‘touch’ more relaxed, when the principal interrupted class and told S.M. Immaculeen (but not us yet) that JFK had been shot.  A few minutes later an overhead announcement for the whole school declared that JFK was killed and school was soon to be dismissed. It was a very strange time for the country, with a lot of controversy (as would happen today), but we eagerly watched TV as the events of the funeral and burial unfolded.  We eventually returned to school, and carried on until our 8th grade graduation (with about half choosing to go to Holy Family High School (the one on St. Lawrences’ corner, the other part going to public school or Bishop Stang H.S.).  

High school ensued with my class size about 78-80, with the freshman homerooms located on the 3rd (top) floor of the grade school.  We were in great shape!! We all had to take Latin (rather tedious but survivable).  I ‘blossomed’ in high school, getting involved in many school clubs - chorus, newspaper, and tennis team.  I generally was elected as a leader of the groups by graduation.  I was accepted to Merrimack College, Andover MA.  I loved Merrimack and by sophomore year elected as a Chemistry major.  However, by graduation, academics had run its course for me ENDING UP RANKWS #1,  and I chose to look for a job in the real world - accepting a job in film manufacturing at Polaroid.  I met my husband, Paul, there too, and we married in 1983.

Fast forward.

Three children arrived in ‘84, ‘86 &’89. Polaroid ended up on shaky financial ’legs’, and began offering ‘golden retirement’ packages. Both of us volunteered. We ended up at home with the 3 kids, and Paul started studying for his license in financial planning and soon took a part-time job working for the IRS in Boston.  We were living in Melrose and we all got up and took Dad to the Orange line train in the morning, and picked him up each evening. Life was good.

One particular afternoon, in Spring 1991, Dad called and said he felt sick (from his meat & cheese sub) & was taking a taxi home.  He arrived (making me pay!) and walked into the kitchen to wash out his mouth, then spoke with a slur saying he wanted to lay down.  We had a couch that pulled out to a mattress, which he gladly crashed onto and fell asleep.  He slept all night, awakening with the same/worse slur so I called 911. Once in the hospital, it was determined Paul had had a stroke- a particular type of stroke called a vertebral stroke.  Only about 20% of all strokes are vertebral - vs. carotid the majority.  He started at the local suburban hospital, but soon transferred to Tufts Hospital in Boston, to see a neurologist whose specialty was vertebral strokes.  Named Dr Louis Caplan - renamed by me Dr Stroke for Paul’s memory. Dr Caplan worked fabulously with Paul.

Ultimately, he got sent to rehab in Woburn. The kids and I managed to go over to visit Dad and they had a good time seeing him and playing up & down with his bed.  Finally, he was discharged from rehab and found his way back home - where he immediately reclaimed his authority over the laundry (thank god!) and life returned more or less to a new normal.

Around Labor Day weekend, Hurricane Bob was predicted for our area. I went out with the kids to do the usual storm-prep shopping - bank, food, gas, candles, batteries. On my outing, I noticed that it was more difficult than usual to park the car. I mentioned this to Paul when I got home.  We all went to bed and the Hurricane arrived during the night. We woke up to no electricity and no heat, but I felt particularly disoriented: I had double vision.

I ended up seeing my PCP,  who admitted me to the hospital immediately, referring me to a neurologist.  He prescribed an MRI (which in 1991, did not exist at local hospitals - the closest one was in Lechmere) I went the next day, and it took most of the day to run the test and have it read.  Finally, I got the films and report dropped on my lap as I lay on the gurney.  As is my wont, I chose to read the report, skipping to the conclusion: evidence of a demyelinating condition, likely MS.  I feigned surprise when the neurologist told me. He recommended I get a second opinion. 

I ended up seeing David M. Dawson at BWH.  He had a deep radio voice and concurred I had MS.  My double vision resolved after a few weeks. With time, Dr. Dawson and I struck up a good relationship.  I saw him every 6 months until he retired in 2007, and he continued to be impressed by the lack of change in my signs/symptoms over time. After five years, he started to say that he thought I might have a case of “benign MS”. He told me he could call it this if I made it to 2001–10 years after my diagnosis–without new symptoms or changes on my MRI.  2001 came and went without a relapse. 

Then in 2004, I developed trigeminal neuralgia (TN), a jaw pain I wouldn’t wish on my worst enemy.  Fortunately, I was lucky enough to respond well to the drug Tegretol.  Over time, though, my TN worsened in frequency and duration.   When I started seeing a new neurologist, Dr. Chitnis, I mentioned the topic of benign MS, she immediately guffawed at the whole idea.   And sure enough, after 10+ years of relative MS peace & quiet, the next ten years were a lot different. 

My first request to Dr Chitnis was to see a brain surgeon at MGH to deal with my TN.  He was well known to do a microvascular reconstruction, meaning isolate the trigeminal nerve, SEPARATE THE TRIGEMINAL from neighboring ‘interference’ and proceed.  I had the surgery in spring 2008.  The TN pain returned.  The surgeon suggested doing a rhizotomy, which would ‘kill’ that branch which worked for a while, but again, the pain ultimately returned.  I was close to having another pain shot, when I mentioned doing this to my chiropractor, who poo-pooed all of it.  He happens to be a board certified upper cervical chiropractor.  He adjusted my neck on a Friday and recommended I check in on Monday.  My TN pain reduced in intensity and frequency throughout the weekend.  I came back in on Monday, he adjusted me again and MY TN PAIN STOPPED.  Since then, I check in with my UCC chiro, to check that I am maintaining my cervical ‘straightness’ and my TN pain remains in control. This was in 2011.  I weaned off all the Tegretol I had been taking.  Life was good. The memory of that  brutal pain began fading. 

I was used to it, but my trigeminal pain was generally ignored by my husband as was any/all MS symptoms, as any empathy he had was destroyed with his stroke.   This included the children/anyone beside himself.  It was taken as s,o.p. In the household by most of the kids, they likely were unaware that things would be/could be different (they were  6.5, 4.5, 18 mos. at the time of Paul’s stroke).

Eventually, the children all grew up and went away to college/other choices until it was just Maggie & Paul as empty nesters.  Paul was approaching his 80th birthday in 2019, feeling his age for the first time.   It took me a lot of time and lunches with his sister & brother-in-law to brighten his outlook.  But he kept returning to the inevitable futility of life, believing that he had reached the end of his assigned time on this earth.  All his children had grown and were following successful careers.  One by one, I contacted the kids and each came to visit Dad individually. He straightforwardly explained to them that he was expecting to die in the relatively near future. He said his goodbyes and told them to take good care of Mom.

He was one tough stubborn IRISH s.o.b. with whom you could not intercede in any way to change his mind.  Each of the girls cooked Dad his favorite things to eat. - bacon at the top of the list…. Within a month he dropped one pill at a time, with varied success.   One morning in April, 2020, the 9th to be exact, he woke up, went to the bathroom, fell down and died. If 2020 rings a bell, yes it was the start of the pandemic.  March 17 give or take. Paul was not allowed a wake or funeral, just a burial with a max of 10 people who drove in separate vehicles. We had 8, and ordered separate meals for each of us.  But given my husband's personality - he would have said  ‘just dig a hole and throw me

in’.  Which we did. 

After Paul died, I was interested in a handicapped apartment building in Dorchester, and already had my name on the list.  I got in by June, and planned to put my house on the market.  I moved June 15th and settled in.  It was all I needed, and was easily manageable. 

However, I soon had to admit that my walking was getting worse. I got a cane, then a 4 footed cane, then a collapsible walker. Several evenings, I fell, either getting something from the frig, or what not, and called 911. In addition, my urinary retention was failing, ultimately resulting in my wearing 24 hour coverage (ie., diapers).  In 2014, my neurologist changed my MS designation from RRMS to SPMS.  My children were increasingly concerned with my failing abilities and proposed that I have a 12 hour nursing aide.  This was set up.  I had 2 aides during the week, which was working out well.  I began using a manual wheelchair while out of the house.  Inside, I was using a walker. My neurologist then recommended I consider applying to The Boston Home.  This application was approved, and I moved in November 2023. 

After moving in, it became immediately obvious to me that indeed this disease is multiple - affecting each of us with different losses -be it their arms- one or both, legs one or both, speech, sight, any combination of those systems mentioned.  It reminded me of the back and forth I’d have with my 1st neurologist who impishly reminded me that this disease was truly multiple.