Tuesday night, January 22, I got a call from my brother, Carl: My younger brother, Mike had died. Jim and I had planned to spend the next day with Mike but stayed home instead and made plans to drive to New Jersey Thursday evening for a Friday wake and Saturday funeral and burial.
Carl had asked me, before Mike had died, if this was very hard for me. “It’s sad, but not devastating.”
Grief after Michael’s death isn’t like anything I’ve ever experienced. And, of course it isn’t. I’ve never been at this place before: my mother has been dead for 5 ½ years, my dad 4 years, and David 3 ½. And now my disabled brother has died at age 59.
I keep looking over my shoulder, wondering what this new grief looks like. I’m not having grief attacks; I don’t double over with pain. There are no tears; just brain fog. I manage my routine, but I can’t seem to focus, settle down, or concentrate. For a week I’ve wanted to write memories of Mike, but I can’t find many. They are buried deep underneath 40 years of living away from Michael. I hope if I keep listening, they’ll come to me.
For the funeral on Saturday, January 26, all of Michael’s five siblings, several nieces and nephews,, three grandnieces and two grandnephews were gathered. On a bright January day, his body was buried in my parents’ plot. In a few months his death date will be carved into the headstone at St. Mary's cemetery in Perth Amboy, New Jersey.
I’ve always known that our family was different, because of Mike. We each had to take our turn watching Mike, keeping him out of danger, but Mom and Dad made living with Michael perfectly natural for us. They loved Michael and fought hard to get the best for him. For them it was a strange and bewildering new world. For me it was the way life always had been.
I grew up more responsible and compassionate because of Mike. Carl said, at the wake, that Michael changed everyone who met him. He had a sweet innocence about him. If nothing else, Michael could help each person realize their blessings, the bounty in life that they had. The things he couldn't ever have.
Wednesday, January 30, 2019
Monday, January 21, 2019
My little brother, Mike
My younger brother, Mike, was a happy child He loved to run and play, sing the alphabet, and talk. He had a great sense of humor and could make us laugh.
When Mike was an infant, it became apparent to my parents that he was severely developmentally disabled. My mom would recount how the pediatrician reacted when Mom voiced her concerns that her baby, Mike, was not passing the normal milestones. She was told he was ‘within normal limits.’ That infuriated her. Even thirty years later, describing this would raise her hackles. As a skilled mother of four children, and a well-trained registered nurse, she was well qualified and competent to assess her baby’s lack of progress. Unfortunately, she was right. At his best, Mike gained the intellectual capability of an average three- or four-year-old.
His gait was uneven from cerebral palsy, but that didn’t slow him down: he was full of energy and vitality. He has epilepsy and when he was thirteen, he went into a state of constant, uncontrollable seizure. He survived but was never the same. He eventually had to be in a wheelchair all the time to prevent a fall during a seizure. Even now, with seizure medication, he often has a small seizure while I am visiting him. He hasn’t spoken for many years. Over the years since then his health has declined.
In the past year, he has lost a lot of weight and had several illnesses. He can no longer sit up and must either be in bed or in a reclining wheelchair. He needs to be spoon-fed. He lives in a nursing home, near one of my older brothers, Carl.
Mike has been especially lethargic for a few weeks. Today a palliative-care doctor confirmed what we all have known on some level: Mike is dying.
Mike has blessed many people over his 59 years. As I love him, he continues to give me the gift of a deeper ability to love and have compassion.
Being an older sibling can be a character-building experience, from the jolt of being displaced as the baby of the family to the (hopefully) eventual overcoming of the attendant envy. Growing up with a little brother who never was older than three or four gave me many opportunities to give care and gain responsibility.
When Mike was about two years old, Mom and Dad decided to try a doctor in Boston who was specializing in developmental disabilities. I wasn’t part of that decision, but I do remember the result: Mike got to fly ON AN AIRPLANE to BOSTON with Mom. As a four-year-old, I had never been to Boston.
Now it makes me smile. Much like the older brother in the Prodigal Son, I envied my younger brother. As an adult, I understand that Mike has never had what I have: a healthy brain and body.
Mike is truly without guile. As a child, he could be naughty, never mean. He was childlike in all the best senses.
Of course, that meant he needed the tending of a three- or four-year-old. He could eventually dress and feed himself, and walk down the sidewalk, but he had to be watched to make sure he didn’t run out into the street.
I believe that we all lived as spirits before our birth. As newborns we are incapable of doing wrong. We develop a conscience and with it both the ability to do evil and the desire to do good. Gradually an average child is able to recognize right and wrong and act with some responsibility.
Mike has never attained that level. When I was a child, my mom taught me that Mike is assured of going to heaven, because he doesn’t have the capacity to do evil. The question of this mortal existence is whether I’ll make the choices necessary to live in heaven with him.
Mike has been my inspiration. I believe he will be whole, in body and mind, after his mortal life ends. I want very much to be with him in that glorious state.
When Mike was an infant, it became apparent to my parents that he was severely developmentally disabled. My mom would recount how the pediatrician reacted when Mom voiced her concerns that her baby, Mike, was not passing the normal milestones. She was told he was ‘within normal limits.’ That infuriated her. Even thirty years later, describing this would raise her hackles. As a skilled mother of four children, and a well-trained registered nurse, she was well qualified and competent to assess her baby’s lack of progress. Unfortunately, she was right. At his best, Mike gained the intellectual capability of an average three- or four-year-old.
His gait was uneven from cerebral palsy, but that didn’t slow him down: he was full of energy and vitality. He has epilepsy and when he was thirteen, he went into a state of constant, uncontrollable seizure. He survived but was never the same. He eventually had to be in a wheelchair all the time to prevent a fall during a seizure. Even now, with seizure medication, he often has a small seizure while I am visiting him. He hasn’t spoken for many years. Over the years since then his health has declined.
In the past year, he has lost a lot of weight and had several illnesses. He can no longer sit up and must either be in bed or in a reclining wheelchair. He needs to be spoon-fed. He lives in a nursing home, near one of my older brothers, Carl.
Mike has been especially lethargic for a few weeks. Today a palliative-care doctor confirmed what we all have known on some level: Mike is dying.
Mike has blessed many people over his 59 years. As I love him, he continues to give me the gift of a deeper ability to love and have compassion.
Being an older sibling can be a character-building experience, from the jolt of being displaced as the baby of the family to the (hopefully) eventual overcoming of the attendant envy. Growing up with a little brother who never was older than three or four gave me many opportunities to give care and gain responsibility.
When Mike was about two years old, Mom and Dad decided to try a doctor in Boston who was specializing in developmental disabilities. I wasn’t part of that decision, but I do remember the result: Mike got to fly ON AN AIRPLANE to BOSTON with Mom. As a four-year-old, I had never been to Boston.
Now it makes me smile. Much like the older brother in the Prodigal Son, I envied my younger brother. As an adult, I understand that Mike has never had what I have: a healthy brain and body.
Mike is truly without guile. As a child, he could be naughty, never mean. He was childlike in all the best senses.
Of course, that meant he needed the tending of a three- or four-year-old. He could eventually dress and feed himself, and walk down the sidewalk, but he had to be watched to make sure he didn’t run out into the street.
I believe that we all lived as spirits before our birth. As newborns we are incapable of doing wrong. We develop a conscience and with it both the ability to do evil and the desire to do good. Gradually an average child is able to recognize right and wrong and act with some responsibility.
Mike has never attained that level. When I was a child, my mom taught me that Mike is assured of going to heaven, because he doesn’t have the capacity to do evil. The question of this mortal existence is whether I’ll make the choices necessary to live in heaven with him.
Mike has been my inspiration. I believe he will be whole, in body and mind, after his mortal life ends. I want very much to be with him in that glorious state.
Tuesday, January 8, 2019
Another talk about my manic depression
On Sunday, January 6, we had our first meeting of 2-hour church. (From 1980 to 2018, members of the Church of Jesus Christ of Latter-day Saints met for 3 hours each Sunday. Before that, there were three separate church meetings on Sunday in addition to children's Primary and women's Relief Society during the week.)
I had forgotten it was fast Sunday until Sunday morning. Members who are physically able abstain from food and drink for 24 hours. I'm always happy not to have to fix breakfast. I don't mind fasting; I do it often. Though, as I age, going a whole 24 hours has become more difficult.
Sacrament meeting on Fast Sunday has no assigned speakers. Anyone in the congregation may speak and bear testimony. I decided to bear my testimony.
I spoke of my experience following the counsel of the president of the Church, Russell M. Nelson. He challenged the girls and women of the Church to read the Book of Mormon between October and December. I gave it a shot and succeeded. I listened to much of it on my monthly drives to New Jersey and New York City.
Our congregation has a lot of turnover. Young families move in for advanced schooling or jobs and then move on a few years later. So, there are always people I haven't met.
I said that I wanted them all to know is that I have manic depression, or bipolar disorder. A thing that has been a real struggle for me is that one of the classic symptoms of mania is that it feels like an intense spiritual experience. That has happened to me in each of my three psychotic manias.
Each time, when I awoke sane again, I was shattered. I immediately recognized that the experience was mental illness, not deep spiritual truth. My spiritual radio set was broken. That has been difficult for me. But I do believe that I can have true spiritual experiences. When I think about the restored gospel and my forty-four years in the Church, I know I'm a better person for it. I look back on my life and know this for certain.
Bearing my testimony two days ago was more like the experience this summer at Girls Camp, and in contrast to my experience at our Church mental health panel and my reaction to it. Afterwards, I felt a little apprehension: did I say too much? Would parents want me as their child’s teacher? Did I reveal things too personal? But, I’m glad I did it. It was easy to do in part because I have told my story many times, week after week, as a facilitator at DBSA-Boston Newcomers support groups. I work to give the story spirit each time. It’s like a memorized poem: I recite it with feeling. Unlike a poem, I can easily include or leave out details each time.
For over a dozen years, I have dreamed of writing a full-length memoir of my experience with manic depression. As the new year begins, I intend to focus on how I can be helpful and supportive here and now. The reason for a book would be to reach out to those confused and frightened young 'Mary Johnstons' trying to make sense of temporary but real insanity. That I can do that right now.
I had forgotten it was fast Sunday until Sunday morning. Members who are physically able abstain from food and drink for 24 hours. I'm always happy not to have to fix breakfast. I don't mind fasting; I do it often. Though, as I age, going a whole 24 hours has become more difficult.
Sacrament meeting on Fast Sunday has no assigned speakers. Anyone in the congregation may speak and bear testimony. I decided to bear my testimony.
I spoke of my experience following the counsel of the president of the Church, Russell M. Nelson. He challenged the girls and women of the Church to read the Book of Mormon between October and December. I gave it a shot and succeeded. I listened to much of it on my monthly drives to New Jersey and New York City.
Our congregation has a lot of turnover. Young families move in for advanced schooling or jobs and then move on a few years later. So, there are always people I haven't met.
I said that I wanted them all to know is that I have manic depression, or bipolar disorder. A thing that has been a real struggle for me is that one of the classic symptoms of mania is that it feels like an intense spiritual experience. That has happened to me in each of my three psychotic manias.
Each time, when I awoke sane again, I was shattered. I immediately recognized that the experience was mental illness, not deep spiritual truth. My spiritual radio set was broken. That has been difficult for me. But I do believe that I can have true spiritual experiences. When I think about the restored gospel and my forty-four years in the Church, I know I'm a better person for it. I look back on my life and know this for certain.
Bearing my testimony two days ago was more like the experience this summer at Girls Camp, and in contrast to my experience at our Church mental health panel and my reaction to it. Afterwards, I felt a little apprehension: did I say too much? Would parents want me as their child’s teacher? Did I reveal things too personal? But, I’m glad I did it. It was easy to do in part because I have told my story many times, week after week, as a facilitator at DBSA-Boston Newcomers support groups. I work to give the story spirit each time. It’s like a memorized poem: I recite it with feeling. Unlike a poem, I can easily include or leave out details each time.
For over a dozen years, I have dreamed of writing a full-length memoir of my experience with manic depression. As the new year begins, I intend to focus on how I can be helpful and supportive here and now. The reason for a book would be to reach out to those confused and frightened young 'Mary Johnstons' trying to make sense of temporary but real insanity. That I can do that right now.
Thursday, January 3, 2019
"A day late and a dollar short"
Happy New Year! I'm a day (or two) late and a dollar (or two weeks) short on blog posting, but here I am!
New Year’s Day, I awoke at 3:50 a.m. to drive Annie and Shawn to Logan Airport, then back to a quiet house, where I napped for a few hours. I spent the day quietly, doing laundry and cleaning up.
Everyone was at home for at least part of the holiday. A friend of mine recently remarked, "Grandchildren are such a delight!" Of course, our own little ones were a delight, but grandchildren come without the burdens of how to feed and cloth and educate them. I don’t fret when it’s past nap time or struggle through a transcontinental plane ride, trying desperately to entertain and quiet a rambunctious one year old.
Thoughts of David flitted through the holiday time, but no sudden spasms of grief, just bittersweet memory of Christmases past and an awareness that there will be no more memories to make with him.
We hosted about 34 people on each of the first three Sundays of Advent, sharing a meal, reading Christmas scriptures, and singing carols. On the last Advent Sunday, we were joined by several of our children and our grandchildren.
And now, the New Year. Jim has a colleague who stopped setting goals several years ago. He has ‘intentions’ now. I’m intrigued. In years past, I made a show of going to bed before midnight and ignoring the New Year's arrival. I pretended not to set goals, but really, I was always setting goals and feeling failure.
Yet, I feel a surge of excitement at the pure-as-the-driven-snow 2019. Can I move forward without saddling myself with unattainable goals?
I want to be realistic. Not commit to 'never again' and ‘from now on,' but be open to new habits and the possibility of being more consistent in the things that matter most to me.
New Year’s Day, I awoke at 3:50 a.m. to drive Annie and Shawn to Logan Airport, then back to a quiet house, where I napped for a few hours. I spent the day quietly, doing laundry and cleaning up.
Everyone was at home for at least part of the holiday. A friend of mine recently remarked, "Grandchildren are such a delight!" Of course, our own little ones were a delight, but grandchildren come without the burdens of how to feed and cloth and educate them. I don’t fret when it’s past nap time or struggle through a transcontinental plane ride, trying desperately to entertain and quiet a rambunctious one year old.
Thoughts of David flitted through the holiday time, but no sudden spasms of grief, just bittersweet memory of Christmases past and an awareness that there will be no more memories to make with him.
We hosted about 34 people on each of the first three Sundays of Advent, sharing a meal, reading Christmas scriptures, and singing carols. On the last Advent Sunday, we were joined by several of our children and our grandchildren.
And now, the New Year. Jim has a colleague who stopped setting goals several years ago. He has ‘intentions’ now. I’m intrigued. In years past, I made a show of going to bed before midnight and ignoring the New Year's arrival. I pretended not to set goals, but really, I was always setting goals and feeling failure.
Yet, I feel a surge of excitement at the pure-as-the-driven-snow 2019. Can I move forward without saddling myself with unattainable goals?
I want to be realistic. Not commit to 'never again' and ‘from now on,' but be open to new habits and the possibility of being more consistent in the things that matter most to me.
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