My highschool boyfriend had mono. I didn't think I caught it at the time. But I got sick often with bronchitis, so who knows. Then, around age 40, I started dragging with fatigue. Months later, I collapsed waiting for the school bus to drop my kids home from their first day at a new school. Spent that week in the hospital and they stayed with their dad. I got tested for all kinds of things, but not mono. Got put into the partial hospitalization psych program and then day treatment. Sat there for months trying to stay awake long enough to get myself home to take a nap. It got worse. More psych hospitalizations, melting down because I was just so frayed and exhausted. My kids went to live with their dad. I went to live with friends for several months. I slowly recovered. It took several years. The worst of it was 15 years ago. I still live with bouts of crushing fatigue and chronic pain. The social toll then was horrible too. I lost some friends I truly cared about. Got treated like a wacko by others. I have done my damnedest not to catch Covid, or the flu, or anything else. After reading your story, I feel like I was lucky to get away with the functioning I have, and that I've been able to heal some of the trauma with my kids who are now in their 20s. Thank you for writing this. I knew I couldn't be the only one.
All that I can really do is echo what Brandon Blake wrote above. That, and that you are a remarkable woman, and in some way, your mother had a role in creating who you have become. I hope you can find some solace in that, and whatever memories you can find of her that were not filled with pain.
Forgive yourself too, while you're at it. You did the best you could with what you had at the time. That's all we can ever do. I wish for you both the gift of peace and healing.
Your story stirs up so many emotions for me it's hard to express coherent thoughts. Understanding that someone had no control over what was happening to them is a good place to build from. Forgiveness doesn't happen quickly, let it be an organic process.
Your story resonated deeply because my first wife went through almost exactly the same set of events with her mother. It was like reading a medical presentation of a disease. The details of the progression of illness and final stage death are almost identical.
Which makes me wonder about viruses that have been flying "under the radar". Infecting people whose symptoms have been dismissed because they were women. Because they affected the brain and behavior. Which when happens in our culture, especially to women, we see it as a form of personal weakness.
Perhaps the increases in mental illness we are experiencing culturally have a true "viral" aspect.
What you had to go through makes me angry. It is a cultural failure that there are not resources and facilities available to families in that situation. No one should have that weight put on them at such a young age without choice. No one should have to carry that much weight alone.
Collectively we failed you. I'm sorry for that. I hope you forgive us eventually. We need you.
My mother-in-law died a couple weeks ago. As a young woman and mother, she had been a very dynamic person, though she also had a cruel streak. The deterioration was gradual at first. She would tell the same story over and over again, and remember facts that simply were not true. But her behavior got worse and worse to the point where most of her friends and children moved away. Her death was not comforting violins (like the death of my mother seemed to be), but rather the loudest and most discordant percussion I could imagine.
The only person who attempted to take care of and support the mother and her husband, during the final most difficult years, was my wife. Her only reward was abuse, not only from her mother but also her guilty siblings. It made sense that my wife stuck around because she was the oldest and had been very close to her mother during the good years. But her mother (along with her husband) had made my wife her personal servant and, in order to maintain that arrangement, taught my wife that she was worthless and could never be more than someone's servant.
It's not hard to imagine the effect this upbringing had on my wife as an adult. She is still today trying to find her self-worth. And really that's what our marriage of 38 years has been about too.
In a way, her mother' death, rather than providing relief, simply created another trap for my wife. At one moment, she is filled with the sadness that her mother, who she loved so much, is gone and never even said goodbye. On the other hand, she gets angry at the memory of what her parents did to her. I don['t know how she will resolve this.
I am much older than my wife. The family conversation sometimes goes to a debate as to which of my severe medical conditions will kill me first. The advantage of being old is that I have pretty much embodied the truth that life is about impermanence and loss, and that is not a bad thing, it just is what it is. So death does not scare me. But I find myself thinking a lot about the effect my death will have on my family. Even if some of my children don't like me very much, I am still "Dad", and they will go through some difficult times. I would do anything to spare them that, but that would be impossible, and I don't want to cheat them out of whatever lessons they have chosen to deal with.
And for you, trauma, massive trauma, PTSD, into C-PTSD...amazing you are not broken and institutionalized, You almost had to become strong and brilliant to compensate...
Jessica. I'm sorry for your loss. Do forgive yourself, no child can heal their parent, although we try. Some indigenous people had healers. You got to be a healer by having the disease and getting treated. Maybe the reason you have such a marvelous ability to reach people comes from the pain and suffering from which you have recovered. Your story reveals how much you have accomplished. And your writings speak to your courage and wisdom.
wow, Jessica... so glad you survived to share with us your knowledge and brilliant observations. I'm so sorry to hear what you, and your mother, went through.
I think it was my mom’s undiagnosed immune deficiency coupled with strep infections and god knows what else. Mental health does not look into physical health enough... the soul crushing society I grew up in crushed her and I thought joining with it was survival. Turn out joining in with soul crushing society is it’s own form of suicide. I should have known why your writing resonates so deeply.
Your reflections on this family trauma have been enlightening. Nobody’s really to blame, except for the healthcare system, because nobody knew any better.. but now you have the wisdom of hindsight. Thank you for sharing your family’s intimate history. Very powerful and thought provoking stuff.
Thank you for writing and sharing your memories and reflections. Being so isolated and taking on that daily burden, for years, at such a significant time in your life must have been deeply confusing and felt so unfair. It sounds like you kept your family members alive - at great cost. And you have made something profoundly meaningful grow from those terrible years. Your writing has been a source of connection and relief to me - and I’m sure many others. Thank you again.
This was absolutely soul crushing to read and poignantly connected to today. I have no words beyond these. May her memory be a blessing.
My highschool boyfriend had mono. I didn't think I caught it at the time. But I got sick often with bronchitis, so who knows. Then, around age 40, I started dragging with fatigue. Months later, I collapsed waiting for the school bus to drop my kids home from their first day at a new school. Spent that week in the hospital and they stayed with their dad. I got tested for all kinds of things, but not mono. Got put into the partial hospitalization psych program and then day treatment. Sat there for months trying to stay awake long enough to get myself home to take a nap. It got worse. More psych hospitalizations, melting down because I was just so frayed and exhausted. My kids went to live with their dad. I went to live with friends for several months. I slowly recovered. It took several years. The worst of it was 15 years ago. I still live with bouts of crushing fatigue and chronic pain. The social toll then was horrible too. I lost some friends I truly cared about. Got treated like a wacko by others. I have done my damnedest not to catch Covid, or the flu, or anything else. After reading your story, I feel like I was lucky to get away with the functioning I have, and that I've been able to heal some of the trauma with my kids who are now in their 20s. Thank you for writing this. I knew I couldn't be the only one.
All that I can really do is echo what Brandon Blake wrote above. That, and that you are a remarkable woman, and in some way, your mother had a role in creating who you have become. I hope you can find some solace in that, and whatever memories you can find of her that were not filled with pain.
Forgive yourself too, while you're at it. You did the best you could with what you had at the time. That's all we can ever do. I wish for you both the gift of peace and healing.
Your story stirs up so many emotions for me it's hard to express coherent thoughts. Understanding that someone had no control over what was happening to them is a good place to build from. Forgiveness doesn't happen quickly, let it be an organic process.
Your story resonated deeply because my first wife went through almost exactly the same set of events with her mother. It was like reading a medical presentation of a disease. The details of the progression of illness and final stage death are almost identical.
Which makes me wonder about viruses that have been flying "under the radar". Infecting people whose symptoms have been dismissed because they were women. Because they affected the brain and behavior. Which when happens in our culture, especially to women, we see it as a form of personal weakness.
Perhaps the increases in mental illness we are experiencing culturally have a true "viral" aspect.
What you had to go through makes me angry. It is a cultural failure that there are not resources and facilities available to families in that situation. No one should have that weight put on them at such a young age without choice. No one should have to carry that much weight alone.
Collectively we failed you. I'm sorry for that. I hope you forgive us eventually. We need you.
Wow. You've really done it with this one.
My mother-in-law died a couple weeks ago. As a young woman and mother, she had been a very dynamic person, though she also had a cruel streak. The deterioration was gradual at first. She would tell the same story over and over again, and remember facts that simply were not true. But her behavior got worse and worse to the point where most of her friends and children moved away. Her death was not comforting violins (like the death of my mother seemed to be), but rather the loudest and most discordant percussion I could imagine.
The only person who attempted to take care of and support the mother and her husband, during the final most difficult years, was my wife. Her only reward was abuse, not only from her mother but also her guilty siblings. It made sense that my wife stuck around because she was the oldest and had been very close to her mother during the good years. But her mother (along with her husband) had made my wife her personal servant and, in order to maintain that arrangement, taught my wife that she was worthless and could never be more than someone's servant.
It's not hard to imagine the effect this upbringing had on my wife as an adult. She is still today trying to find her self-worth. And really that's what our marriage of 38 years has been about too.
In a way, her mother' death, rather than providing relief, simply created another trap for my wife. At one moment, she is filled with the sadness that her mother, who she loved so much, is gone and never even said goodbye. On the other hand, she gets angry at the memory of what her parents did to her. I don['t know how she will resolve this.
I am much older than my wife. The family conversation sometimes goes to a debate as to which of my severe medical conditions will kill me first. The advantage of being old is that I have pretty much embodied the truth that life is about impermanence and loss, and that is not a bad thing, it just is what it is. So death does not scare me. But I find myself thinking a lot about the effect my death will have on my family. Even if some of my children don't like me very much, I am still "Dad", and they will go through some difficult times. I would do anything to spare them that, but that would be impossible, and I don't want to cheat them out of whatever lessons they have chosen to deal with.
Incredibly touching piece. My heart goes out to you in sympathy. May God bless you, your family, and your mother’s tortured soul.
And for you, trauma, massive trauma, PTSD, into C-PTSD...amazing you are not broken and institutionalized, You almost had to become strong and brilliant to compensate...
Jessica. I'm sorry for your loss. Do forgive yourself, no child can heal their parent, although we try. Some indigenous people had healers. You got to be a healer by having the disease and getting treated. Maybe the reason you have such a marvelous ability to reach people comes from the pain and suffering from which you have recovered. Your story reveals how much you have accomplished. And your writings speak to your courage and wisdom.
wow, Jessica... so glad you survived to share with us your knowledge and brilliant observations. I'm so sorry to hear what you, and your mother, went through.
This is an important article, Jessica. I hope many people read it. I was unaware of a link between Epstein-Barr and schizophrenia.
Explains why you recognise society’s defence mechanism: wanting things to be ‘normal’. I wish you continued strength and healing on your journey.
You were a child, and you owe no one an apology. I’m so sorry you had to go through so much pain.
I think it was my mom’s undiagnosed immune deficiency coupled with strep infections and god knows what else. Mental health does not look into physical health enough... the soul crushing society I grew up in crushed her and I thought joining with it was survival. Turn out joining in with soul crushing society is it’s own form of suicide. I should have known why your writing resonates so deeply.
Your reflections on this family trauma have been enlightening. Nobody’s really to blame, except for the healthcare system, because nobody knew any better.. but now you have the wisdom of hindsight. Thank you for sharing your family’s intimate history. Very powerful and thought provoking stuff.
Thank you for writing and sharing your memories and reflections. Being so isolated and taking on that daily burden, for years, at such a significant time in your life must have been deeply confusing and felt so unfair. It sounds like you kept your family members alive - at great cost. And you have made something profoundly meaningful grow from those terrible years. Your writing has been a source of connection and relief to me - and I’m sure many others. Thank you again.