Remembering Family

Early Childhood and Surgeries

I was born in Boston, Massachusetts on April 27, 1943.

When I came home from the hospital, I used to cry all night long. The doctor said, “Let her cry, she will be alright.” I was spoiled by my parents because they were afraid that I was in pain. They would pick me up every time I made a peep.

Early on, my father suspected I had Cerebral Palsy. When I was 10 days old, a famous physician confirmed the diagnosis to my parents. He told my parents to put me in an institution as I would never amount to anything.

My parents did not like what they heard. They refused to put me away; I was their little girl.

My family consisted of my mother, Pauline, my father, Malcolm, my older brothers, James and John, and younger brothers, David and Danny. My mother suffered a miscarriage after I was born and before the birth of my brother Danny.

When I was three or four years old, I was enrolled in a nursery school in Boston. Dad would pick me up from school and bring me home in the middle of the day. I remember mother would make my father lunch so he could drop me off, eat, and then go back to work. It was a tight schedule.

I had numerous operations on my legs during the early school years because they were crossed before. The surgeons had to release tendons behind my heel. I ended up wearing leg braces. My brothers would tease me miserably, so I would hit them with my braces, and boy, did that hurt! They would lay off me for a while after that.

In 1950, when I was seven, I went to a hospital in Lakeville, Mass., which is about an hour south of Boston. I was there for a year and a half. I remember it was Good Friday when I stood at the end of my bed in the hospital ward and walked straight across to the other bed, all by myself. I showed my parents what I could do when they came to visit me that Sunday. They couldn’t believe their eyes.

When my Aunt Helen and Uncle John came to see me, Uncle John would ask me to put my hand in his pocket, and there was a little white bunny in there for me to play with.

By 1952, I returned home. When my parents returned me to the doctors who had seen me before I went Lakeville, they couldn’t believe they were looking at the same girl.

During this time, I had a home tutor five days a week. she was a strict one. If I didn’t do homework, there would be no parties for the holidays. She tutored me for several years.

Teen Years and Books

When I was 13, in 1956, I was enrolled in a school that was then called the Industrial School for Crippled Children. I stayed there until the tenth grade, only because school was so hard and I stayed up late every night trying to finish homework assignments.

As a young person, I helped write two books. One was a children’s book that I wrote with my tutor about kids not being afraid of the hospital. It was titled “Jimmy.” It was published around 1960. The other book was about a doctor at Boston Children’s Hospital; he and two or three other doctors described what it was like to be diagnosed of Cerebral Palsy. The doctors asked me questions about my experiences.
Adulthood, Independence and Gainful Employment

I lived at home with my parents until 1976 when in my 30’s. We found out there was a house opening at The Charles River Center, a non-profit residential living facility located in Needham, Mass., that provides supported living opportunities. I lived there for 10 years.

The tall ships came into Boston in 1976, and one of the staff had a high rise apartment. We were invited to a party, and the ships were a beautiful sight! I remember that Jim, one of my roommates, couldn’t feed himself, but he smoked a pipe.

Charles River set me up in an employment program so I could work in a medical lab labeling specimen bottles at Beth Israel Hospital. It was my first job, and I enjoyed it so much. Some of my coworkers would invite me along after work when they would go out for dinner. There would be about 10 or 15 people and I would have such a great time, I never wanted to leave.

It was when I lived at Stott House at The Charles River Center that I met Sybil. She was a character, to say the least. She took so many medications she didn’t even know what she was doing. If she didn’t take her meds, she would have spasms. She left Stott House and moved into Boston Center for Independent Living. Due to her experiences, she went over to the Massachusetts State House to encourage better policies for herself and other people with disabilities. She advocated for us.

When I was about 35 years old, I had three or four neck surgeries because I was having lots of headaches. I had a few disks removed from my neck. The surgeons would go in and scrape the bones before they finally removed a few disks.

Then, I moved 13 miles away into my own apartment in Westwood, Mass., with a roommate. Home health aide staff came in and helped us a few hours a day. I was there for about five years.

I had two roommates, one at a time. They had to leave for various reasons, and each was a rough experience for me. One time, one of them almost died because she was epileptic. I was told that I saved her life.

Adulthood, Aging Parents and a Career

In 1981, at the age of 38, I took classes to prepare for the General Education Development Test (GED® Tests), a series of reading, social studies, science and mathematics tests for those that don’t have the opportunity to graduate from high school. I did four years of work in seven months.

Not long after, my father came over to see me. He told me my mother was in the hospital. She was released in time to see my graduation. The doctors had released her because they said nothing was wrong with her. We had a graduation party, and a week later, on October 19, 1982, mother wanted to go back to the doctor. She passed away while getting ready to leave; dad found her in the bathroom.

The night before mom died she told dad to get an apartment in Westwood, so the both of them could live there. After mom passed away, my father decided to move to Westwood to get out of the house. He did it for my mother.

In January 1983, I went to work at Babson College in Wellesley, Mass., as an assistant doing filing and computer work. I worked there for 15 years.

From 1998 to 2005, I lived at Lifeworks, a residential training center in Norwood. But I attended The Charles River Center, 15 minutes away, to work.

I returned to the Stott House, at The Charles River Center, to live in 2006. It was a difficult adjustment for me to make.

Mark and Sam, who still live with me now, were already living here. They made the adjustment process a little better. I use to be afraid of the fire drills we had to do; after a while, I just got used to being woken up in the middle of the night for a practice drill.

Vacations, Socializing and Fond Memories

In 1975, I belonged to the Cerebral Palsy Organization of MetroBoston. We use to go on trips; we went to Bermuda, and it was a blast! We stayed for five days. Believe me; people with Cerebral Palsy can out-drink anyone. When we reached Bermuda, there was a cocktail party waiting for us. After we dressed in the morning, we enjoyed breakfast around the pool. I remember there were a lot of people who went shopping and sightseeing. I liked sitting in the lounge chair by the pool best of all.

We took another trip it was to the Miami Seaquarium in Key Biscayne, Fla. One night, at about 9 p.m., we decided to go to a club. There were three people in the cab; in the back window were these beer mugs that we brought home from the club. When we got home with our beer mugs, we were hungry, and the only restaurant that was open was a waffle house. We pigged out on waffles at 5 a.m.! That was our last night in Miami, and we didn’t have much time to pack our bags. We were all tired and we didn’t want to go home. We returned to Boston around at 4 p.m. No one could talk because we all had laryngitis from having such a great time at the club.

I also went to Las Vegas with another resident and two staff members when I lived in Norwood. We enjoyed a lot of sightseeing on bus tours. The hotel had a casino on the first floor. We spent a lot of time there and had some fun gambling and playing slot machines. The buffets were unbelievable; it was $10 for all you can eat. When we would travel on the elevator, we could see all of Las Vegas through the glass, and it was beautiful. The amount of lights in that city was amazing! No one ever sleeps.

But I had also traveled with my family. One year, I went to Florida to see my grandparents with my aunt and uncle for a week. That was the first time I had been on an airplane, and I was all by myself.

“In spite of my disability I wouldn’t trade any of it for anything because it makes me who I am. I have a lot of friends that support me in everything I do. I hope my readers find this helpful in some way.”

– Priscilla Morrison

A person who is disabled can choose whatever they want to do. People can sit back and let everybody do stuff for them and not try to do it themselves, but you have to work hard for what you want out of life.

Senior Years, Family Decisions and Financial Plans

Dad

When dad was around 75-years-old, we started to see some changes in how he behaved. He became very forgetful. He would sometimes fall asleep while cooking dinner on the stove. In order for him to remember everything he would have to write himself a note every day. One time he wandered up to the center of town in Westwood, Mass., and couldn’t remember how he got there, or how to get home.

My brothers and I were worried about dad all the time. We finally looked into a nursing home. We ended up placing him at Charlwell House Nursing and Rehab Center in Norwood, Mass. He was a hit over there. He loved all the people and activities. Dad was a wonderful guy. He would do anything for anyone, always putting other people first. He would love to go for rides with his sister, Jeanie or a close friend, even if it were just to get an ice cream. My dad knew everyone, and everyone knew my dad.

I remember when my brother got married, he helped dad get dressed and brought him to the wedding. He was there 10 minutes, and he already wanted to go back to the nursing home. It wasn’t that Dad wasn’t having a good time at the wedding, it was because he was getting worse. He just felt safe at the nursing home and nowhere else. In 1992, was when dad’s condition was worsening; they had him on oxygen all the time.

On Thanksgiving Eve, myself, my brothers and aunt all had an appointment to see dad’s doctor to talk about his condition. The doctor said dad wasn’t getting any better, but he could live if he breathed with the assistance of a breathing machine and was medicated. The family decided that this is not what dad would have wanted. He would want to be at peace; dad knew where he was going. He was a religious man who always did what was right.

So, at around noon time that very day, we decided to take dad off the breathing machine and keep him comfortable. The whole family was by his side until he passed away peacefully; free from pain.

Brother James

My oldest brother, James, started to show signs of Alzheimer’s’ disease at about 68 years old. It began with slight memory loss. He used to take care of all my finances up until three years ago, when David took over. James use to do everything for the family. He had such a sharp memory too. When he was around 67, he retired from his job as an accountant.

When James retired, he enjoyed being home with his dogs. Rita, his wife, worked at the Brigham and Women’s Hospital, Boston, Mass., in the pulmonary department. James would take her to work every morning at 5 a.m. and pick her up around 6 p.m. We use to kid around with him that he was the “stay-at-home wife” that did all the cooking and cleaning.

James is a very quiet guy, so hearing him raise his voice would mean something is really bothering him. There were times where he would really forget about doing things. Of course, since his wife was a nurse, she could see the signs of the disease.

Around 2008 he would go to Brigham to get checked out by a specialist, or sometimes to Newton-Wellesley Hospital in Newton, Mass. The three or four years that followed were the worst. On Monday and Tuesday, while his wife was at work, he would have to go over to a day care center for adults. My brother Danny would pick him up at the end of the day and take him home. James would work in the kitchen with some other people and really enjoyed himself.

He has been moved from one facility to another as his condition progresses. If and when he is able to go back to Charlwell, it will be a lot easier for the family to visit him. His three daughters are taking turns staying with my sister-in-law for support.

Brother David

Fifteen years ago, my younger brother, David, found a spot on his skin under his wrist watch, and didn’t think much of it. Because it was getting bigger and darker, he finally went to the doctor and they said they would “watch it.” It turned out to be melanoma.

David went into Dana-Farber Cancer Institute in Boston, Mass., a cancer research hospital, and they put him on a steroid treatment. The treatment left big soars on his legs. The treatment lasted for about two years, but it stopped working. So he went to the hospital again, and they put him on different medication. By the end of October 2011, David had lost all of his hair. It grew back after his medication was changed again. He is getting pretty wiped out from his treatment.

David usually always cooks Christmas dinner, but not last year. He just didn’t have it in him. The tradition is broken, and he went to another person’s house for Christmas and only stayed a short period of time.

David’s wife and son live close by; his daughter lives out of state.

Brother Danny

The other night, I talked to my brother Danny, and he said that he doesn’t know how much more James can take of this treatment, because it is really taking a toll on him.

Danny is my youngest brother. He is a retired electrician. In his younger days, he was a wild kid and got into all kinds of mischief. After high school, he joined the U.S. Marine Corps.

Danny has a daughter named Tammy; she has five kids, one of which has Downs Syndrome.

Tammy said that God must have thought she was extra-special to give her a Downs Syndrome girl. Tammy reminds me a lot of my mother because she involves her daughter with everything; ballet lessons, horseback riding, you name it.

With five kids, Tammy is a busy woman. Two years ago she decided to go back to nursing school. On Christmas Eve, she told the family that she had passed her big exam.

Right now, Danny and I are holding the family up. We are trying to keep everything together for the rest of the family.

My Health

Three years ago, I had some challenges of my own. People with Cerebral Palsy have a lot of trouble swallowing. The muscles in the throat don’t work as well. You get to the point where you start choking on medications and food. Over three years ago, it was getting really bad. So I went to the doctor and he said that I need to eat through a tube and never eat anything by mouth. It was a hard decision to make. I’ve done very well with it. There are times when I see everybody eating and I wish I could have something too. To this day, whenever there is a party going on, it sometimes bothers me that I can’t eat like everyone else. It is something that I will never get used to. I lost a lot of weight during that time because it was hard for me to tolerate my feeding.

In November 2011, I began experiencing extreme pain in my abdomen. I would be getting ready to go to work when I called one of our famous nurses, Noreene, and she would take care of everybody like a mother hen would. She always knew the right thing to do. When I went to get checked out, the doctor told me I had two kidney stones. Of course, it took three or four ambulance rides until they finally found out that the kidney stones were causing all of this darn pain.

Before Christmas, I went for a follow-up CT scan and a small kidney stone was found. The doctor said not to worry; we will check it again in six months to see if it gets bigger. He is a good doctor and everyone says not to get rid of him. I was sure that I will come out of it all right, I always do. The anticipation was grueling.

After the first surgery, I was admitted into an area hospital, and it was the worst experience of my life. I called it the dog hospital, because they treated me worse than an animal. The nurses only came in to check on me three times a day. I developed a terrible rash on my bottom. That rash took weeks to heal. This was all because of the poor care that was given to me. My medication was increased and I had a hard time communicating with my family. I felt like I was literally flying in the air and it was snowing all over the place. I was sleeping most of the time. My brother Danny wrote a letter to the State.

In early January 2012, I was very busy shredding papers for Charles River and having a good day. I could never sit around and do nothing, that’s just not my style. I had pain in my abdomen; I told the nurse at the day program. My doctor ordered a CT scan that was performed on Jan. 6.

After the scan, my doctor called my house and told my supervisor, Marie, that he wanted to meet with me. He wanted my brother Danny to come with me. When I first heard the news I said to myself, oh no, not again! Here come the heavy drugs and a spinning room with bad dreams.

I had surgery on June 7, 2012 at Beth Israel, and it wasn’t half as bad as I expected it to be. The surgery and the recovery process went better than anyone expected. I stayed in the hospital for one night. I had a catheter placed during surgery and it was left in place for over a week. We had some complications with the catheter that required an emergency room visit and some adjustments before it felt a lot better.

I endured two surgeries in a very short amount of time. The kidney stones were so large that the doctor needed to go in twice just to get all of it. During one of my many hospital stays, I acquired MRSA and had to have all of my visitors gown-up just to walk into my room.

When I finally returned home to my own bed the door in my room was opened so people knew I was home. Whenever they saw the door open, they would come over to chat. I was home the rest of the week relaxing and recovering.

I soon felt well enough to go to my house’s party to celebrate the start of summer. It felt nice to get out and see all my friends. I was dressed in a beautiful pink skirt and pink tank top. I had some pizza and Jell-O. It tasted so yummy. I returned to the day rehabilitation workshop at Charles River the following Monday.

Recently, I changed doctors. Somebody told me that there was a new team of doctors that come to the house whenever you need them. So I decided that was a good thing for me. They can do everything from blood work to physical exams, and I don’t have to go to the doctor’s office. It makes it a lot easier for everyone.

My nurse practitioner sees a lot of other people who live in my house. It eliminates any travel time and it allows me to spend more time doing what I want to do. And it cuts the time I have to be in the hospital. I only have to go when it is an emergency or when I need surgery. My nurse practitioner is in the process of looking for a kidney specialist to deal with these pesky stones.

Goals, Joy and Advice

I have two goals at the workshop. The first was to sit in a recliner two to three times per week. I gave myself until after July 1 to be able to use the stander. Before my surgery, I was able to use the stander for an hour and a half two times per week, but since my surgery I wasn’t able to. I have to start building the amount of time I can be in the stander. Being in the stander makes me feel good because it helps strengthen my legs. It feels really good to be in the stander when people come over to talk to me because I am at their eye level, for once.

My brother, Danny, did something very special for me. He re-decorated my room with the help of Jane, an interior decorator. My favorite part of the room is my mirror. It is looks like a sun with mirrors for the rays of the sunlight. All my furniture is white and there are beautiful blue and green pillows and artwork all around the room. I also have a beautiful white chair so my visitors can sit with me. I have a white cabinet with shelves that stores all my activities for daily living things.

Before, all my stuff used to be all over my room, and it looked really messy. But now it’s neat and organized thanks to my big brother. When they were finally finished everyone that came to visit wanted to stay over, even staff!

I have some advice for people who have Cerebral Palsy, from my own experience.

My parents never babied me. They knew I couldn’t do certain tasks, but they would have me do as much as I possibly could. Do what makes you happy.

As for parents, let your child try whatever they want to do, or can do. They need to learn for themselves, because one day, mommy and daddy will not be there. It is just like any typical child, you have to let them test out their wings and learn to fly on their own!

In spite of my disability I wouldn’t trade any of it for anything because it makes me who I am. I have a lot of friends that support me in everything I do. I hope my readers find this helpful in some way.