Process

The Joyful Anthology

An Interview with Lauren Marks; Author of A Stitch of Time – The Year A Brain Injury Changed My Language and Life

By Karina Gallego

Lauren Marks

Writer

Author of A Stitch of Time – The Year A Brain Injury Changed My Language and Life

 

What is your educational background? Training?

BFA in performance from  NYU Tisch School of the Arts. Attended The Graduate Center at the City University of New York pursuing a PhD in Theatre, but my path veered dramatically when I had my brain injury.

Beginning

When Lauren was 27, she was touring a show for the international fringe festival in Edinburgh, Scotland. and while she was performing on stage she had a brain aneurysm rupture. After the emergency operation, she mainly lost her ability to speak, read and write. Her life as an actor, director and PhD student in New York ceased, and the course of her life radically changed direction. The book follows a year on her language recovery journey. As one might expect, there was a lot of changes in her family, romantic relationships, and living situation. It was “a lot of challenge and lot of joy”, Lauren said with a smile in her voice .

 

I read Lauren’s book and was completely blown away by her story. It’s a true reflection of her intelligence and resilience. While interviewing her, I could not believe that her voice belonged to the same woman I was reading about. After a few minutes into our conversation, I was struck with disbelief: Is this really the voice of Lauren who had such a tragic accident 10 years ago?!” It was a little surreal because I felt so connected to her after reading her story and to hear her expressing herself so beautifully brought me so much happiness. During our interview I didn’t want to just talk about her book, I wanted to get to know the woman who was able to accomplish so much.

Our conversation lasted more than an hour and I couldn’t get enough of her humor and her sincere laugh. Lauren is real and down to earth and she really reflected that in her book. However, Lauren is quite humble and modest with herself as well. She’s hesitant to give advice to others because she believes we’re “wired” differently. Lauren says, “neurologically, what drives us is so different. So i can only (give advice) to myself, really, and hope that people that does resonate with, they have petual. And for people that doesn’t resonate with, something to ignore…” (she chuckles).

 

People always dream or talk about writing a book about their life experiences but many just don’t find that spark that pushes them to do it. I wanted to know what tools or processes helped Lauren be successful in her project. Even though Lauren’s spoken language is at a very high level now, she still struggles with aspects of her language disorder. Lauren says these ongoing symptoms of her brain injury require, “ a lot of patience, but it’s become my new normal to use software and know that it’s going to take me longer than most other writers to do certain things”. This is a reminder that we cannot always accomplish projects from one day to the next. Like in yoga, we need to accept where we are and come to terms with it to allow ourselves the space and time to move forward. It took Lauren ten years to finish her book without a clear path of where her idea really would take her. We’re all so different and face different challenges in life. Lauren has learned ways to do things differently but I think that anyone with or without aphasia can also take note on how she gets things done!

 

Like many other people who have acquired aphasia, Lauren’s insurance only covered the first six months of speech therapy. Lauren said, “the book itself” as being “this incredibly long, personalized session of therapy. I was working through my injury while I was experiencing my injury”. She continued to add, “part of my injury meant that I didn’t always know my injury. The brain is the organ of perception but when there’s an injury to the brain there can be injury to your perception too.” Lauren couldn’t understand the scope of her language deficiencies until she had the ability to reflect on them later. It was a very humbling and very scary moment to realize how damaged her language was. Soon after her initial panic, her innate curiosity propelled her to a journey that would end up in a published book.

The book was written as a personal account to describe the process of learning language and how it occasionally involves an engine of delusion in order to get to the next step. She was interested in the topic of herself but focused on “how do we do these things?” kind of questions. Lauren explained that during the development in children they always think they’re at a fine level, “so as an adult it was pretty amazing to see that same engine, it was interesting to think that some things were fine when they were not fine. That’s something that got me interested in the topic of myself in a way that wasn’t completely self absorbed.” And in addition to her own curiosity, was the support of her family.

Even though Lauren did not receive an income from her writing most of the time, it was her job. And she dedicated her time in a concentrated way. After her speech and language therapies she would go home and dedicate six or seven hours to her writing “in whatever way that might manifest itself” and listening to music without words, like the flute music of Hariprasad Chaurasia or the piano pieces from The Rachels. She mentioned that a portion of her first draft was actually what got her her first writing residency at the Virginia Center for the Creative Arts. Showing us that even though we may not think our work is perfect, it’s good enough for others to recognize its value. But the only way to get there is to find what helps you create content to propel your ideas forward.

 

Lauren also accepted the natural development and change that her piece was taking. At first she felt that she was just writing about her personal experience but after re-acquiring the comprehension skills to understand scientific texts,she incorporated research into her work using text-to- speech technology
because at this stage she was still struggling to read. For Lauren, aphasia affects her in ways that we may never understand but she explained, “It may seem like a small thing but I don’t always see the small bits of a sentence, it just sort of disappears on the page for me. But if you’re reading a scientific paper, the difference between ‘of’ and ‘for’ can be the difference between the cause and the effect”. Lauren needed to create a “toolbox” to become a different kind of writer to finish the book. Every developmental step within her recovery changed how her process worked. And being able to recognize that and adapt is what allowed Lauren’s project to progress. Many people tend to find themselves stuck in the middle of a project because they can’t figure out a way to move forward but Lauren quickly learned the importance of diversifying her talents.

 

In the book, Lauren talks about “the quiet”. It was one of the topics I found most interesting about her experience because she described it as an unintentional moment of pure meditation; a state of deep peace that occurs when the mind is silent. Her aphasia affected her ability to talk to herself. I remember this part that really resonated with me, which was her excitement for getting dressed in the morning because she was fascinated by the space and distance between her skin and her clothes. She also remembered how she would just stare out the window watching the trees blowing in the wind and transitioning throughout the day. I was mind blown by this idea because I never thought that an injury to your language center would affect one’s ability to talk and think to oneself, creating “the quiet” in the mind.

Lauren believes that “It’s nice to think of the self as a unified whole” but she knows it’s not true. “I’m prone to occasionally having that sort of process but something said, I know part of that is the illusion of self the brain can create. It is working on so many disperate abilities and operations and as soon as some of those change, it loses the self”, she explained.

I have always been interested in the topic of how identification with the self creates a greater level of consciousness within us. Meditation is the main technique used for millennia to achieve this higher level of consciousness. Throughout history, humans have always sought out a way to channel the self into our daily lives to live more mindfully. And to find a greater purpose to our being that our distorted perception does not allow us to connect with.

So it got me thinking about so many things. For example, the importance of meditation for the brain, especially when the brain is injured. Does it consciously tap into this state of meditation as a form of healing itself? Did “the quiet” have any effect to Lauren’s personality after she was able to regain her language ability? Lauren expressed that she really wants her book to have “a much more lasting effect in the therapeutic, medical and biological realm”. The questions of how language affects thought have not been answered yet. Lauren wants the dialogues between the patients and clinicians to further research and says, “even though the book is for lay readership, I do want these questions to be asked and I want them to be investigated in more thoughtful ways”. This is something new for people learning about aphasia because it’s always been considered as an elderly persons disorder. But to have the first-hand experience of a young, vibrant, intellectual woman has really allowed for more questions to be asked about the disorder. This is one of the reasons Laurens story so valuable.

 

Did you continue seeking a meditation practice?

I was always interested in religion. I’ve had a yoga practice since I was 15 and as a young religious studies student I had an initial distaste for the idea of doing yoga because I thought it was way too commercialized and it was totally misunderstood by the western yogi’s. And that remains to be true. Yoga is highly commercialized and to think that doing these postures is the essence of yoga when it’s the smallest element of it. That being said, I came around to say that yoga is much more resilient than what is trying to be sold from it. It is still absolutely beneficial. I never found anything that engages all parts of my body and mind as a very productive asana. It remains helpful.So in spite of my reservations about how our society builds it and embraces with a very limited understanding of it, it’s still more resilient than our approach to it. And as far as meditation, I think for several years “THE QUIET’ was readily accessible, now it is much more deliberate- my meditation practice. And I must admit, ever since my son was born I haven’t been much on the mat because every minute is the next emergency. But it is something that I did throughout my pregnancy too. Sitting through meditation is a deliberate practice now and it’s not just that I slip into quiet now the way that I used to. I think the only thing that I would say about that is, even though its deliberate, it’s not esoteric. Meaning that I think a lot of people meditate hoping to find something there and they ask themselves “was that it? Did I almost get it?” and for me I know it’s already there. Even if I can’t always tap that wave exactly, I have felt it, I know it exists. It’s not like a search in vein. The knowledge that is there is enough to make the practice valuable.

It’s clearly there and even if you don’t have a spiritual practice, I use the neuroanatomical lens as well saying that the right hemisphere and the left hemisphere are perceptual engines and they are equally valuable.  And if our left hemisphere is the more verbal hemisphere, in silence we become much more aware of an egoless perseptual state.Where we all have the ability to feel part and parcel of the world and not of the narrator of the world. And quietly putting ourselves at the front of it all. But writing about a language disorder or writing about meditative practices or quiet is in many ways undoing the thing itself. I’m aware of it and it’s one of the reasons i’m not super interested in writing about myself again because there’s a trap to it. It’s a challenge to always balance to say “I am this” and “I did this” without being caught up in your own narration because time and time again neurological studies prove that the left hemisphere is a meaning making machine. Both parts of the hemisphere are but the storytelling machine will tell a story whether or not it’s true. They will put together the smallest information to create a story because that’s how we survive in the world and that is really in most ways beneficial and very beautiful. But when you start believing your own story, it has its own drawbacks.

When you first found out when you were pregnant, were you nervous about being a mother with a disability? And perhaps not having the support or community? What were your challenges as a new mother with a neurological injury?

My pregnancy was planned and it was a challenge for me because as a person who’s gone through neurological injury, my menstruations have never became normal. Through acupuncture or through herbs. I never pursued deep medications to try to reset my cycle because I still have a period, it’s just completely and utterly inconsistent. Like it can be 5 weeks in between cycles and I think in the book I mention that I didn’t have a period for two year.

So my husband and I knew that that was the work we were up to. That being said, I did have concerns about having a high risk pregnancy. I also continued to, I don’t want to say actively worry because I don’t let it become that but I wonder and certainly hope that my son did not inherit my neurobiology. I hope that he doesn’t have any aneurysm and i hope that he doesn’t the capacity even have them form. But i do know that aneurysms are more common in the brain that anyone may have anticipated. 1 out of 50th person a person have a brain aneurysm. And it doesn’t mean that they’re going to have any issue with it.

I have a very resilient partner who dealt with some of the biggest challenges of the world as a human rights researcher. I think between the two of us we’re very aware of the challenges of the world. My language disorder sometimes affects us. This has been something between a third and a fourth of my entire life now. It is hard to even think about living without it. It’s not something that i have to deal with in any active sense really. Yes, i’m working with it every day but i’ve worked with it so long that the work feels a little invisible.

“There can be a very thin line dividing the mistaken and the miraculous. There can be direction, even in the misstep.” I don’t want to come across as overly spiritual I don’t want to say that there’s not such thing as a mistake meaning like everything is intended, i’m not saying that. But there never has to be a mistake because it is what takes us to the next thing. It is what informs a much, it has at least the potential to take that lesson in a positive light and the potential to inform all the better decision we make from then on.

And sometimes the mistake and the non deliberate action will take you to your husband or your speech therapist or to a discovery.

I think we overly prize the deliberate actions and undervalue the unintentional discovery.

What’s going on in your life after tackling this great feat of finishing a book and now being a mother?

I work part-time, trying to stay as active in disability advocacy. In London I had a much more active role at a speech and language center for people who’ve acquired language disorders (aphasia, basically). In general, it’s not just people with disabilities I feel compelled to champion. Just any section of unheard voices is part of what my next steps are.

In Los Angeles there’s this organization called POPS which stands for Pain of the Prison System. I work as the communications director for them, in a part-time role because it’s a relatively new organization. It helps children at the high school level who are affected from the prison system, usually with a loved one who’s been incarcerated or is currently incarcerated. It’s because there’s such a need in this country, we have such a tremendous incarceration rate. The numbers are pretty hard to pin down with the most reliable figure seems to be 1 out of every 15th child who has experience of parental incarceration.

The fact is that children in our society are suffering with the shame and stigma and the unwillingness if not, the inability to express themselves. There’s a lot of things that force them to silence. Whether it be an actual language disorder or societal challenges, I do find myself really drawn to championing unheard voices. It also suits my life as a mother, for the role being part-time and being a Los Angeles based organization, however it’s also national, you can look them up at popstheclub.com. They are standing and I really hope that as my child is getting a little older, I hope that the organization becomes a more substantial part of my life. I certainly believe in their mission. I’ve seen a lot of beautiful work come out of these kids. Writing is the touchstone and there’s a lot of visual art. As the generation that started it 4 years ago, a lot of them just graduated from college and working in the community facility as self-advocates. They speak for themselves about how children are affected by prison and that’s the goal! To create people who can work on their own behalves so someone is not speaking for them. It’s a theme throughout my book, I felt anger or frustration when I had people talk about me like my father’s emails or my friend including me in her book. That doesn’t mean I don’t love them, gosh I couldn’t love them anymore but there’s a lot of frustration when someone translates you because there’s always going to be mistranslation. So the more people have opportunities to speak for themselves, even if that means in very limited way, like people with aphasia may only re-aquire 50 words in their vocabulary, but communication is a human right. So that’s going to be a lifetime goal for me to keep working in that direction.

 

What advice would you give someone on fear holding them back from pursuing something what they want to do? I told you that curiosity would come back and here it has. It is interesting that when i had more language abilities, when i was able to multitask, when i was more preinjury, quick witted, capable and could read incredibly quickly and write incredibly quickly. It’s fascinating that when I had that abundance of riches linguistically, that i felt most dispirited. And now that i have so much less I was able to value the very little I had. And i think that stuck with me, the fact that i had so much more, i felt paralyzed to move forward like “how am i going to write or how am i going to work as an actor” i was plagued a lot with self doubt. I think most people are. those things are kind of built into society unfortunately. And I know that delusions are part of the equations but i started to write and work on this, i kept thinking that i was almost done. But it calls for just a sense of your own mortality does factors in a little bit.

I treat my life just how everyone treats their life. I just do what i do and I try to value what I value. But somehow I can’t tell you if it was my deliberate practice or my delusions or my curiosity or a combination of all those things and more which is what probably is more likely the case. It was a little bit of everything and the joy of reliving everything. The joy of discovering my love of language again. I am just incredibly so much more generous to myself. It doesn’t mean that i don’t have moment of self doubt but I just don’t indulge in them. They happen but i think there is some value in looking at yourself critically.

Self criticism is not the problem. Its dwelling in it.

I just kind of get off the hamster wheel before it goes too far.

I wasn’t being sincere if i didn’t look at the deep darkest places.

Letting yourself off the hook, examining yourself. I hate to give prescribed advice because people go through different paths but for myself that was my advice. So whether or not people want to take that and i use it, i don’t know but i would say for myself, be driven by curiosity, allow self criticism, but do not dwell on it. The curiosity is much more valuable. Your intuition. Your creativity. Your empathy. Your openness, your alertness to what happens around you, all of these things are so valuable and the potential for self criticism to drown those things out… it’s serious. And in many ways indulgent.

In a societal level, you’re sort of encouraged to dwell on that. And what that means is that we’re not dwelling in other things that are really necessary; treating each other well, looking at what’s happening in the world. It is indulgent to keep looking only inward with disdain. I mean, that is a lot of work. That takes a lot of hours of the day. And there are other things you can be doing for each other.

What does the joyful approach mean to you? / How do you try to live joyfully?

Nurturing curiosity and purpose, in myself and those around me. Sharing this life with people who nourish and inspire me. Being a source of joy in others’ lives.

Conclusion?

The lessons that I’ve learned from her experience is something that I’m going to hold in my heart forever. I know that she may not know it but her story was more than just a glimpse at the effects of aphasia, it was a glimpse of human determination. How we’re capable of so much even in times when we feel we’ve lost all ability to be who we used to be or lost all ability to express ourselves. I feel like we get bogged down with thoughts that may paralyze us or our dreams. We don’t find the drive to pursue and successfully execute an idea. Writing this piece on Lauren was a challenge for me because I wanted to convey the beauty of this human’s soul through my words. However, I do not believe I’m a good enough writer to give her story any justice, you will just have to read her book yourselves. So in a way, her story has been very healing for me and I’ve learned great lessons from her shared wisdom.

 

 

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