So last week, I performed in a Moth- inspired storytelling event. It wasn’t an event about mental health- which is why I did it. Others spoke about when they came out as gay or having cancer- and by performing alongside them I want to normalize mental illness. The story I told is the first chapter of my book- about the significance of my second hospitalization. Feedback welcome!
Yesterday was not a good day, but I thought today was a better day for my reflection. It is tiring and frustrating to have to assert your worth, in my case because of my health status. Yes I try and overcome and address my anger with poetry, with boxing- playing the brave superhero- but there are days I feel unheard, misunderstood, not enough. I’ve lost important things as a result of my health status. So some days just aren’t good days because I get tired. Tired of all the things I have to do just to keep going.
Today is better. But it doesn’t wipe away all the pain. I share this because it’s true and I’m sure it’s true for others.
Similarly as we acknowledge Martin Luther King Jr remember it’s not just all statues and street names. He died because of his fight for equality- because as we have blatantly seen-many people do not believe in black folks common humanity. Especially right now, we need to take that in.
The presentations I do at schools, hospitals, family groups, etc are for the National Alliance on Mental Illness here in MA. I present on my experience living with mental illness, from my dark days to my successes. My first for this program was in March. In my evaluations, the number 1 thing people say is- “you are so brave.” Brave? I don’t feel brave. I feel COMPLETELY PASSIONATE AND COMPELLED. This is what I should be doing. It’s in my spirit.
Mental illness has affected every aspect of my life since it arrived in 2010. And mental illness is NOT treated the same way as a physical illness. And that is my mission- they should be. One example- If you have s hip replacement, afterwards, a person comes to your home for rehab. If you are hospitalized for a mental illness, you are lucky to see a dr once in three days. You are usually discharged without ongoing support. It’s lonely and hard.
So brave? No I do not consider myself brave. I am telling my story. In the New Year, I will be using this Genesis page for more writings, videos, and other content. If anything, I want us to love and understand each other more deeply. And that, I feel, is a good use of my life.
Hi everyone- I am sharing my performance from This Is My Brave Boston here on my website. You might ask “why? Isn’t that private information?” Well, if someone tells you they have diabetes, does that make you uncomfortable? Or a broken leg? My goal, and the goal of many others, is to make talking about mental health as normal as any other condition.
Also because of the present stigma, talking about mental health also saves lives. Please share my story. I want people to know they can overcome even deep adversity and that there is hope.
And because it’s Giving Tuesday-consider This is My Brave.
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You may wonder why I have come out to talk about my diagnosis of PTSD openly. Today is one of those days that illustrates one reason why.
Unfortunately, it is another day when gun violence comes back into the national consciousness as James Hodgkinson shot GOP Representative Steve Scalise and others at a congressional baseball practice.
This tragedy, like so many before (Sandy Hook 2012, Emanuel African Methodist Episcopal Church 2015, Pulse Nightclub 2016) renews debates from Facebook to CNN. Who has access to guns, how, and why?
Unfortunately, it is also in the midst of these debates that our country inevitably dips into the issue of mental illness.
It is not the imagination of those of us with a mental health condition that these issues - violence and mental illness - become conflated. Consider this article about former President Obama's proposal to curb gun violence through promoting Mental Health First Aid, a program in which I am a trainer. Although he is progressive and the proposal is well-intentioned, the proposal explicitly makes the link between people who have a mental health condition and violence. However, people with mental illness are no more likely to be violent than anyone else, and people living with mental health conditions are TEN TIMES more likely to be a victim of violent crime than the general population.
And yet, in the face of these tragedies, words like "crazed" are thrown around easily to describe perpetrators.
In our national consciousness - and unfortunately on Facebook posts - those who are responsible for these tragedies are called the "Poster Children for Mental Illness."
But what about the majority of people who have a mental health condition that are not violent? There's Dr. Kay Redfield Jamison who has bipolar illness and has spent her life addressing mental illness stigma as a medical professor of psychiatry. There's Dr. Clayton Chau, who is a psychiatrist, refugee, person living with PTSD and a suicide survivor.
And then there's me. Yes me. Someone you know. In my involvement with my peers with mental health conditions, I can say without hesitation our lives are filled with loss - loss of opportunities, loss of relationships, loss of financial stability, loss of confidence and self-esteem. One of the reasons for the loss is the pervasive stigma that follows us, even within the mental health community. We constantly confront assumptions about our abilities and our character.
My road to recovery has not been straight. At times, I have felt like I was barely hanging on, even with my advantages. I have watched people celebrated who confront physical challenges (and I celebrate them too!), but its while my diagnosis is conflated with violence.
So, I will keep talking about my recovery with PTSD . . . Until a girl with a PhD degree - and all others like me - are considered "Poster Children of Mental Illness."
It's time to begin? Why is that so important?
Because I probably didn't understand myself that we always have a choice, and a chance, to change something. You do too.
I was diagnosed with a life-long health condition. I thought that was etched in stone, and I could not do anything about it. But I've learned this as life's apprentice- that change could come. It didn't come quickly, or neatly. And many changes didn't feel significant.
At the time, I didn't know I was making a choice, and I didn't realize that I indeed had choices. My health condition was something that happened to me, right? I hadn't done anything to bring this on, so why should I change...anything?
But...I got up one Sunday morning in 2013 and went over to Vasona Park in Los Gatos, California. I ran a 5K, and I come in last. I didn't feel like getting up, and I didn't feel like showing up, and for a bit less than an hour, every minute, I felt like stopping. That was March. In October, I finished my first half marathon.
Today, that was almost 700 miles ago. I have also tried some other things I had never tried before. For example, 2 years ago, I ran up and down 333 enormous concrete stairs at Harvard Stadium. It wasn't the whole stadium, or even half, and I fell. But I began where I was. Recently, I have been running and lifting weights UNDERWATER. And two years from now...
Jon Kabat-Zinn said- "The little things...they aren't little." Beginning anywhere, wherever you are, and it may feel little. Don't let that stop you. I had no reason to believe getting up that morning and going to Vasona Park for a 5K would make any difference. I can't say that I've overcome my health challenges, but I can say I'm different and my life is different. I run now. I climb. I lift. Simply because I began. And you can too.
I introduce myself to you through my story of adversity.
Remember You are Brave.
When Richard and I were married in 2009, we took vows. You know them-
Sickness and health.
Richer and poorer.
Better or worse.
I remember someone joking we went through all of them in the first couple years of marriage.
I've had a career path with different roles, but one theme of these roles is that of supporting people through adversity. Maybe because my own experiences of adversity started early. Maybe it's a calling. Or a talent.
But in 2009, I was going through what can be thought of as "normalized adversity" in a PhD program in California. We'd been there since 2005. We were already poor, sustained by my fellowship and some jobs we cobbled together. And as for PhD committees, most everyone gets bruised in that process, a gauntlet more than a test of intelligence. But it was fairly certain that (hopefully) in May 2011 I'd be Dr. Jenn.
So you could say that was enough, thank you. And there was always the job market I'd have to contend with.
Then in one day, my life as I knew it changed. I experienced my first hospitalization. Doctors struggled with my diagnosis. It was later called PTSD. At the time, they thought- and we were practically assured- my condition was temporary.
And then they started the medications. I became almost sicker than I was without them. I couldn't sleep. I became extremely anxious. But without the relief of rest, I sat at my computer, trying to complete complex analyses for my dissertation.
After months, a medication finally worked for me. My doctors, Richard and I tried to figure out what was best for me. I decided the best chance for me to finish my dissertation and PhD program was to fly across the country to Massachusetts and stay with my mom. Each day while she worked I could make progress.
I was weary but hoped this plan would work. Then, less than a week before I flew home, my brother called.
This was unusual.
We had not seen or spoken to my father since 1985. I was 12. He was a Vietnam vet casualty. He decided to leave the family, became homeless, and then lived years on disability.
The police had called my brother. Our father had died. Suicide.
I thought I was going to my mom's for a quiet atmosphere, and the first thing I had to do was bury our father.
I felt tired and frayed. I wasn't speaking to Richard, for reasons I forget now. On empty, on more than empty, I thought about letting up on the gas. Yes, I needed a job, and yes maybe I could still graduate in May, but with an arrangement that I finish my dissertation for December. Maybe that was a reasonable concession. So I emailed my dissertation chair.
My dissertation chair sent me an email, and in it was an email from the professor that headed the PhD program in our department. They knew I was sick, but thought it was "just exhaustion." I had been advised not to talk about my medical condition to them, so I didn't correct anyone. You know Jenn, she pushes herself hard.
They didn't know my diagnosis. Or about my father.
The head of the PhD program had said that, although I was technically enrolled in her class devoted to students making progress on their dissertation, I could go to my mom's and update her.
What she didn't say, but she was saying now, is that she hoped so much I would finish by May because she didn't want to have to fail me in her class. She really didn't want to have to fail me.
My doctor, before I left, had recommended knitting for the anxiety that had surfaced around my diagnosis. I didn't know what to do, so I took an enormous ball of green yarn and started knitting a ridiculously big...thing. I didn't even know what it was. I just sat there, on the couch, knitting this thing. This useless huge thing.
Because I was new to knitting I made a lot of mistakes and I didn't know how to correct them. Finally, I realized there was a huge hole in my thing, and the yarn I was using was fluffy so I could not make out the stitches. So then, the only choice left was to take more hours and disassemble my thing.
But that's how it happened. It was a weeknight, and my mom had women over as she teaches a doll making class. I came downstairs to say an obligatory Hi.
" Your mom says you were knitting but had to take it apart. That's frustrating."
"Haven't we all been there?"
Then one by one, I hear the stories of each woman, and the knitting they had had to take apart.
The next morning, I pasted a picture of my brother's recently born son, Cayden, to my notebooks. I sit in front of the computer, but I pretend I'm knitting. I take deep breaths. I don't feel much better than the day before. Each letter I type feels hard fought.
A month or so later, I'm back in California talking to my doctor. I've never seen anything like this before. That's what he said. I'm probably the subject of an article he wrote for a journal. He asks me how did I do it, how did I write my dissertation, and practically all in a month? Under those conditions?
I don't know how to answer that question. All I know is each morning I sat at the kitchen table, set up my computer, took breaths, and typed. That's all.
So, in May 2011, about 100 pages later, I wore the sash signifying I was now Dr. Jenn. One of the professors in the department came up to my husband and said- "Wow. That Jenn. I've never seen someone sail through a PhD program so easily. She's amazing." My husband shook his head.
I've had to be strong before in difficult situations. This was different. However, somehow, I passed through my own personal depths of discouragement.
I don't necessarily have advice or an explanation to wrap up this story with. All I can say is I've witnessed many go through what I'd call extreme adversity, and there can be the other side.
So, I respect those whose stories include multiple layers of challenge. I support them. I refuse others' easy explanations that we do not get more than we can handle. Because sometimes we do wind up with just that. More than we can handle. And the ones who make it through aren't necessarily any better than those who don't. And the ends aren't perfect. For example, my illness wasn't temporary. I still wrestle with it. But I'm still not defeated.
Gems are forged in great pressure. And that pressure can take many forms. So I remember the words of Lauryn Hill when I'm yelling about how things aren't fair.
Remember don't be a hard rock when you really are a gem.