Soheila: My story as an Iranian Feminist

I was born and raised in Esfahan, the second largest city in Iran. I grew up with a blurry understanding of the role of religion in constructing public and private spaces. I was born in a middle-class family of six. Islam directly affected my experience especially after my Islamic adolescence age. My father as a feminist man always gave us a chance to choose and to question social norms, and my mother taught us to perform femininity. These juxtapositions put me in a gray space where I could see life from different perspectives.

After I immigrated to the US, I started learning English. At the age of 22, I was adjusting myself to a new culture as well as a new language. I started to find out about the importance of community, as I felt lonely in a few years of my stay in Michigan. I started doing eyebrow threading for Muslim women and my skill became a bridge to a new world. After speaking with many Muslim women who cover up in the US, I realized how they were targeted by stereotypes. I then moved to a small town in Pennsylvania and I became the target for those stereotypes. I was the only person of color in a very white American town. I realized how people feed their brain off of the media without questioning social norms. I thought about my father and how he taught us in Iran to not accept everything without re-thinking.

It became my mission in life to do something about the misrepresentations of Muslims in the US. I now actively am involved with socially engaged art in Chicago where I challenge the white supremacy. My hope is to bring my art out of galleries and have it accessible to all.

Noah: My Story with Autism Spectrum Disorder

I am volunteering for Human Library Chicago under the book title “Autism Spectrum Disorder.” With how prevalent autism spectrum disorders have become, there is still much that is not understood about them. Furthermore, the use of the word “spectrum” can be overlooked–even people on the same “functional” area of the autism spectrum may have completely different personalities and such. Therefore, one of my reasons for volunteering is to share my story of living on the autism spectrum. Another goal of mine is to attempt to break down the pre-judgment that can come with the labels.

Just because I hold a label, I am not any less capable of functioning and thriving independently. I certainly struggled in social situations when I was a child, but with loving parents and supportive teachers, I was able to use speech therapy to improve my social interactions with my peers. This also taught me social mores that may seem innate to others, such as eye contact, taking turns while speaking, and listening. This was challenging for me, but the ability to learn it convinces me that I can do anything. It has also allowed me to blossom socially, through various activities in which I have engaged, such as contract bridge, bike riding, and sporting events.

In spite of the social awkwardness that I can have, Asperger Syndrome gives me a different way of looking at the world. It may sometimes be pedantic, literal, and analytic, but there exist problems in the world which do not respond to so-called conventional thinking. This can be both an asset and a liability, but through my experiences, emphasizing the positives has been tantamount.

Matt: My experience with HIV

I had a fever of 103, sore throat, sweaty from my feet to my head, achy all over, bed reddened, and exhausted. I went home for Thanksgiving and still had all the symptoms so I went to the nearest clinic and they prescribed me ZPak. The fever finally broke but my stomach began to hurt and my skin was irritated all over. I thought I was allergic to the Zpak – This was a nightmare.

Finally, I went to Northwestern Medical Clinic and the doctor told me to take allergy pills and put some cream on the rashes but that didn’t help. For the next couple weeks, I shrugged off the irritated skin, stomach issues and just changed my diet, cleaned, did my laundry more often, and paid attention more to my daily habits. As much as I paid attention and changed my habits, I continued to have the irritated skin and stomach issues. I couldn’t hold anything down.

Finally, I gave up and made an appointment with a Physician to have a check up and he asked, “If I wanted to get tested for HIV?” I automatically said, “No!” out of panic. I was scared that I might have HIV and from all the negativity I hear about it, that is the last thing I wanted to have. I also told myself a long time ago, that if I ever get HIV, I’d have to commit suicide. Finally, my doctor convinced me, he said, that it has progressed since the 80′s and you will no longer die from the virus and the treatment has come a long way. So I got tested for HIV and wouldn’t hear back for a few days.

I remember sitting at work with a lump in my throat waiting for a phone call from my doctor to see if I was living with HIV. I could barely breathe; my voice was shaky, and I was about to have a panic attack. All I could think about is my family can’t see me like this. He called and my blood work came back inconclusive and I had to schedule another visit to draw more blood. I was a wreck and I couldn’t even focus – I was sad, angry, and unstable. I knew if my blood work came back HIV positive – I had to commit suicide. I went to the doctor that evening and had 8 tubes of blood drawn from me. I remember my doctor telling me, I will live a long and normal life and there was no reason to commit suicide.

On December 28, I went to the doctor’s office to find out my results and it came back HIV Positive. I put my head down and cried. I never thought this would happen to me. There I was crying hysterically as Seth (my boyfriend) held me. My thoughts began to flutter:

“What will I tell my parents? What about my health insurance? How will I pay for my medicine? What happens from here? When will I get the medicine? How does all this work? My thoughts fluttered…”\

For the next few months I settled into to being angry, sad, nervous and not sure how to tell my family and friends. I spent many days at home laying in bed and taking many days off of work while seeking treatment with a Doctor at Northwestern Medical Group. I gave blood to determine where my white blood cells (they fight against anything that attacks the immune system) are and how much virus is in my body. I found out my white blood cells were very low and there was a substantial amount of virus in me so my doctor would soon prescribe me Antiretroviral Drugs. The Doctor prescribed me Stribild so I went to pick it up at the Walgreens and without notification I would have to pay $900 with my Health Insurance. I went back upstairs and told her that I couldn’t afford the medication so she gave me a Gilead Drug Assistance Card. The card would give me a $400 discount and the cost for the Stribild was now $500 – I still couldn’t afford it. This began a long process of seeking treatment.

After jumping around to various HIV Healthcare Facilities I arrived at University of Chicago to seek treatment and finally got my medication covered 100 percent. I started medication and still continued to have stomach issues, which would result in me switching to the Antiretroviral Drug Complera.

Through this whole experience, I had the idea of coming out HIV positive and running the Chicago Marathon to raise money for HIV/AIDS and blog openly and honestly about living with HIV.

On March 2nd, I decided to come out HIV positive and talk openly about my status via blog. This began a new journey, a journey that allowed new people into my life and pushed some people away. This hardest part was not having the support from my own family when I was dealing with symptoms of the virus. For 2 months, I wasn’t talking to my family and had to quit my job because at this time I was working with my family. I had to put all that behind me because I needed to stand tall and give back to people living with HIV/Aids because I was once judging and throwing stereotypes at them.

This whole experience has changed my life forever. The experiences I have had with sharing my story has encouraged people to talk to me about their HIV status, encouraged people to ask questions and to give others hope. Sharing my own life story goes beyond me, it is simply about living my life openly and honestly to give others hope and belonging. This has given me the opportunity to uncover my sexual abuse, depression, suicide, alcohol abuse and financial instability and by speaking publicly about these struggles it will allow others to stand witness of their own struggles. Like Brene Brown says, “Owning our story can be hard but not nearly a difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy-the experience that makes us the most vulnerable. Only when we are brave enough to explore the darkness we will discover the infinite power of light.”

Sean: My Story as a Veteran

I served overseas during the first Gulf War. As a child, I did not experience much racism or discrimination – I grew up in a diverse neighborhood and around people who saw one another for who they were, not what color they were. Unfortunately, this was not my experience in the armed forces. It became clear to me very quickly that the color of my skin affected how people treated me. This was hard enough on a day-to-day basis, but became a real obstacle when I needed to return home because of a death in my family.

Today there are some support services in place for veterans after they have completed their tours of duty. When I was serving, this was not true. I suffered from PTSD but did not understand what was happening. I had trouble reconnecting with friends and family, and I struggled to find a job.

In the years since, I have found a good job, developed positive relationships, and gained some perspective on my experiences in and out of the military. But I will never forget those difficult times.

Juan-Pablo: My experience living with Bipolar Disorder

Volunteering for the Human Library Chicago is important to me because it gives me the opportunity to share my experience with the hope that it will help reduce the stigma surrounding mental illnesses. One of the most effective ways to reduce stigma is by having contact with a person living with a mental illness. It is my hope that by sharing my recovery story, others can see that recovery is real, possible, and probable.

I feel that the title of my ‘book’ is just that- a title, not a label. I would like to share my recovery story to represent what recovery means to me. Recovery is different for all individuals embarking in this journey. Recovery requires effort, personal responsibility, and support. It means developing strategies, wellness tools, and a support network that will respond in a moment of experience symptoms of the illness. Yes, although I am in recovery, I still experience episodes of depression and struggles with the illness.

I don’t regret experiencing what I have because it has made me the person that I am today. I feel prepared to face the challenges and rewards that recovery bring in to my life.

I hope to communicate a message of hope and reduce the stigma associated with mental illnesses. We can live good productive and fulfilling lives in spite of having a mental illness.

Ashley: My experience as a biracial woman

Volunteering for the Human Library Chicago to talk about life as a bi-racial person is important to me because we are becoming a mixed-race nation.  I think it’s important to talk about cultural identity and the hardships of “fitting in” with a culture and being accepted.  I want people to see that we are all the same and that mixing of race and culture is a beautiful thing.  We don’t have to choose which group to identify with we can identify with all people. We need to be more tolerant towards each other and hopefully grow to love and respect our differences.

One of the most common misconceptions I have heard about bi-racial people is that they are confused. I have heard people say that bi-racial children don’t know what culture or race they belong to and spend years trying to figure out their “identity”. I don’t believe that is true. I have a family full of multiracial people and they all know who they are and where they come from. That could be attributed to parents who made sure the children knew about their culture and heritage. That is another thing I would like to address during this project. Parents of biracial children need to take the time to teach the children about their cultures. Even if you are a single parent that child needs to know about the other parent’s customs and be exposed to people like them. If not then that may feel confused and that they don’t fit in with the people they are around.

Because of my book title I have experienced racism and prejudice. This happened mostly when I was a child. Black girls did not like me because of my olive skin and long, curly hair. They also didn’t like me because they saw me as competition. Black boys courted me and put me on a pedestal which also upset black girls. White girls didn’t want to always include me and would sometimes make fun of my puffy hair and darker skin color. White boys did not want to date me because they didn’t want to be made fun of for dating a black girl. I wasn’t dark enough for the black people and too dark for white people. I didn’t understand why we all just weren’t people. I didn’t understand why people didn’t like me when they had never even spoken to me. I hated being judged based of appearance only.

There were times in life where I felt like I just wanted to be one race but not because of how I felt inside (confident and strong) but because of how others would make me feel. People acted like I had to choose a race or culture to identify with instead of just being Ashley! However, today I would not change my race for the world. I have a lot of pride in saying I am multiracial. I would like my story to inspire young people to be themselves and embrace their diversity! Revel in the fact that you can identify with many people and cultures! I would also like to educate parents on the importance of teaching children about all of their cultures!

Adam: What it means to be Physically Disabled

On a recent visit to a café, I was deep in conversation with a friend when without warning our talk was interrupted by a child of about 6 years old. Filled with a lack of hesitation, the young boy stated emphatically, “That’s a really cool wheelchair!”, eyes wide, near maniacal grin in tow. I smiled, happy to reply. “It’s pretty cool, right?” He scurried off without so much as another word, back to his parents, no doubt with a new toy to add to his Christmas list. As the conversation with my friend neared its end the little boy popped back into my peripheral view with new questions, curiosities, and comments. “How do you make it go?”, “What’s this button for?”, and my personal favorite “Sooo that’s how you turn it on!” Reflecting his excitement, I answered in kind. I caught a glimpse of his parents waiting for him to conclude his interview. “Come on Max”, they said, coaxing him towards the door. As the family began to leave the café his parents smiled at me as if to say something I couldn’t quite infer. Potentially a “Thank you”, or a “Sorry about that”, as if all the respect for boundaries they have yet to impart will cure social improprieties, but just not today.

In the end, after Max and I bumped fists in light of an all too rare exchange and the family walked out of the café, I was left to contemplate the potential of our brief encounter. As a person living with a physical disability, using a power wheelchair has been a tool in my ever expanding quest toward a deeper independence. However, in this case I was reminded of the double edge a person in my position tends to discover. That despite being a barrier to the freedom I long to hold, it too creates opportunities to connect with others in profoundly unique and unexpected ways.

I chose to volunteer for the Human Library Chicago to provide a (hopefully) fresh perspective on what it means to be physically disabled and, in my case, use a power wheelchair on a daily basis. I have found there are such wild variations between individuals on what they have come to see as the “correct” way to converse and interact with a person in a wheelchair. My life has proven to me that often all it can take is a sense of curiosity, deference, and a genuine desire to understand another person’s experiences to weather many well-meaning, but improper assertions. With that in mind, the biggest misconception about having a physical disability is that it’s unacceptable to ask me about my disability. I want you to ask questions, but from a place of mutual respect, not condescension or sympathy. In the end, its people with a genuine interest and questions which reflect that interest that help me to feel heard and, most importantly, accepted. My book title can feel like a heavy rock holding me down at times, but also as a path to growth and insight at other times. I hope others will come to realize through my participation in the Human Library Chicago, that their interest in and willingness to forego social convention in an effort to talk about our differences is not only acceptable, it’s encouraged.

Grace: My experience as a Brain Tumor Survivor

The need for a story is called into being when something has gone amiss with the known world, and, thus, the language of a tale seeks to comprehend that which has stepped out of line. In a sense, stories compensate for an unknown or unnatural deviance that begs for an explanation

— David T. Mitchell and Sharon L. Snyder

No cancer is good, but a brain tumor is pretty bad. Because the treatment has to be so aggressive, many survivors often deal with lifelong medical issues, including other types of cancer. I feel that I am most affected by these lifelong medical issues (technically called “late-onset side effects”), and they influence how I see myself and how I interact with the world more than the actual fact of having had a brain tumor. I tend to identify more closely with others who deal with chronic diseases (such as autoimmune disorders) than with people who are cancer survivors. The tumor is gone but everyday I take 4 kinds of pills and one injection, I have had both of my hips replaced, I can’t drive, I can’t have children, and I have and will probably continue to develop additional conditions because of treatment. I know I probably won’t live as long as other people, and I get sick far more often than most people. But every day I just keep getting up and trying because – well, I don’t really like the alternative.

No one can be certain, but it is likely that I was born with this tumor. Although it started affecting my health when I was about 11 years old, it was not diagnosed until I was 19, after my sophomore year of college. I was treated with surgery, chemotherapy, and radiation therapy. Afterward, I looked completely different – I was about 60 pounds heavier due to the treatment, my face was puffy and my complexion was poor, and what hair I had was darker and curlier. I felt completely different, too. I had spent a year isolated from most people except my parents and medical professionals; I was frightened and jaded by my experience; and the radiation therapy had changed how my brain worked so my classes felt extra difficult. All this meant that I really struggled socially when I returned to school, and the reactions of my peers did not help. A former friend of mine stopped speaking to me, even though I saw her almost everyday at school. An acquaintance who I ran into in class couldn’t mask his surprise and mild disgust at my new appearance. Many of my friends simply stopped communicating with me – no emails, no phone calls, not even a get-well card during my treatment. I can see now that all of these reactions were the result of fear – fear of the unknown and fear of mortality – but they still hurt. On the other hand, the few people who stuck by me during that time will likely be my friends for life.

Here’s the nuts and bolts of what happened: After my sophomore year of college, I went to Lens Crafters to get a new prescription for my glasses – I kept getting headaches when I read. I failed ALL of the vision tests and they told me to go see a neurologist, pronto! I did. He told me nothing was wrong but that he’d schedule an MRI anyway. Once he’d seen the results of the MRI, he scheduled me for surgery ASAP. Those few weeks between the MRI and surgery were some of the most difficult of my life; just waiting around not knowing anything except that I had a 7-hour surgery to look forward to. The tumor was removed successfully; but after a few days in the hospital, the doctor informed me that the biopsy showed that it was a different kind of tumor than they’d expected: it was a rare malignant growth and I would need chemotherapy. While I was waiting to begin the treatment, the tumor grew back. I had three days’ worth of emergency radiation therapy, and then began a course of chemotherapy that lasted about 6 months. I don’t remember most of it because the anti-anxiety drugs I was given were so strong. After that, I had a further six weeks of radiation therapy to my brain. About 6 months after that finished, I began to experience pain in my hips. I ended up having both hip joints replaced – I had developed avascular necrosis because of the steroid treatments I was on to shrink the tumor. This is when the bone tissue literally crumbles away, and the joint disintegrates.

Since then, the tumor has not returned. My doctors informed me that because this is such a rare type of tumor, they don’t have very accurate statistics on survival. They think that since I’ve made it past the 5-year mark, I probably won’t have another recurrence. But I still go for an MRI every year.

 

How has this affected my life? Let’s see.

My brain works differently after the radiation therapy. It is harder for me to learn new tasks, my memory doesn’t work as well, and I have a harder time focusing for long periods of time.

After treatment, I NEVER wanted anyone to touch me. I had been poked and prodded by too many strangers. It took about a year before I even would let my family members give me a hug.

I get tired easily. You’d think that having had the tumor removed would help, and although I feel better generally, I just get tired. A lot. It kind of puts a kink in my social life and work life.

I get sick easily too. A bug that most people could shake in a day or two will knock me out for a week or two.

One of the medications I took during chemo made me hungry ALL THE TIME. (Did I mention I gained 60 pounds, even though I vomited on a regular basis because of the other chemo meds?) That medication really left an imprint on me – even now, 12 years later, it is very hard for me to know whether I am hungry or not.

I will have to get another pair of prosthetic hips in 10 years. And thanks to these titanium babies, I can’t ski (that’s OK – I’m scared of it anyway) and it is really hard for me to clip my toenails and put on stockings.

I nearly died twice, and sometimes that means I have a hard time seeing the value of investing fully in my life. Hoping for good things is a lot of work when you’ve seen some pretty bad things.

For me, treatment was an incredibly dehumanizing experience. I had to put all of my energy into managing my pain and fear, and I had no time or energy to just be myself. I had to go through extraordinarily difficult experiences, always knowing that it was “for the best” and would “save my life” – but never knowing if it would actually work. While this did turn to be true, I am still recovering from the year I spent simply being a “survival machine” and never actually feeling like a person.

 

But on the plus side:

I am assertive and good at communicating about my needs. I just wish I didn’t have to learn this by dealing with chauvinistic medical professionals.

I have become rather an expert in endocrinology (for someone who has never gone to med school).

I have a small group of very kind and true friends who do not hold my diagnosis against me, and who simply see me for who I am.

I have spent far too much time in a pediatric cancer ward, and this reminds me that despite my circumstances, things could have been worse. I survived – but it’s not just that. I was old enough to understand and express my emotions clearly, I didn’t have to go to middle school or high school without hair, I didn’t miss prom or summer camp or junior orchestra or science fairs or service learning. By the time I started treatment, I had nearly 20 years of life under my belt. On one hand, this made it very difficult to “restart” my life afterward (I’m only 12 years out of treatment – the balance has not yet been restored); but on the other hand, I had some coping skills to help me through the tough times.

I wrote earlier about the negative ways my “friends” reacted to my condition. Today, I do my best to surround myself with people who support and cherish me – but this is not always under my control. I have had some very bad experiences traveling in airports with prosthetic hips. These range from gate agents not believing me when I requested to board early due to a disability, to receiving very aggressive pat-downs, to having TSA personnel wave my medication around and ask who it belongs to (I’m pretty sure that’s a HIPPA violation). But the most disappointing of all the unpleasant treatment I’ve received has been at the hands of doctors. As a young woman trying to communicate about rare and relatively unknown medical conditions, I have run into a lot of obstacles. Doctors just don’t believe me. I was misdiagnosed more than once, and have had multiple doctors tell me that “nothing was wrong” when in fact I had a brain tumor (this happened twice!) and then avascular necrosis in my hip joints. I would often have to specifically ask doctors to speak to and make eye contact with me instead of my father. I’ve also had holistic medical professionals insist that they could “cure” me of my “need” to be on medicine – but I don’t take medicine to mask symptoms or deal with pain. The medicine I take is to compensate for what my body cannot do on its own. Without it, I would die.

These are all examples of people choosing not to listen to me, literally and metaphorically; and by not listening, they were not acknowledging my true humanity. This unwillingness to listen and acknowledge is, I believe, the root of all stereotypes and discrimination, and the cruel and violent behaviors that can result from these mindsets. If we cannot respect the fact that we are all individuals with unique and important stories to tell, then we risk reducing our understanding of people to simply a color, a religion, a gender, or – in my case – a diagnosis. This is why I tell my story, and why I support others in telling their stories. Thank you for listening.

Printers Row Lit Fest – June 2014

The first Human Library Chicago event took place on June 7th & 8th in 2014 at Printers Row Lit Fest. The two day event attracted more than 100 participants. Our 10 ‘books’ included the titles of HIV positive, Substance Use Disorder, Vegan, Bi-racial, Feminist, Kinky, Autism Spectrum Disorder, Physical Disability, Atheist, and Venezuelan Expatriate.

Our first event was widely praised by participants. Here’s what people thought of their experience:

“Humanizing our biases has a very powerful impact. This experience underscored my belief that the complexity of the human experience humbles us all and likens us.”

“I learned that courage and bravery is every where and these open books are amazing human beings.”

“This experience was incredibly insightful. I’m so thankful to have had this experience.”

Couldn’t make it? Experience the Printers Row event by watching the video below!

Human library Chicago from Zongwei Li on Vimeo.