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Brain Arteriovenous Malformation, Stroke, and Disability Diana Lozinger

Cover image retrieved from https://publichealth.jhu.edu/2020/an-unequal-response-covid-19-and-disability

(1) Pittsburgh (2) at work (3) in my backyard

About Me

I am a sophomore counseling and philosophy major (with a theology minor). I come from the north hills of Pittsburgh. I am my own case study in this project. My future plans are to pursue a Master's degree in Clinical Mental Health Counseling and become a clinician. Some of my areas of interest in counseling are the socioemotional aspects of disability, health psychology, spirituality and religion in healing, EMDR, and feminist and multicultural therapy. In the theological realm, I like learning about my own faith (Catholicism/Christianity), interpretations of the Bible, as well as the social and philosophical elements of religion.

Brain Arteriovenous malformation

An AVM is a tangled mess of vessels--both arteries and veins--which cause high pressure ("AVM", Cleveland Clinic). They can be found in various places in the body, but they are usually found in the brain, brainstem, or spinal cord. These places put someone at most health risk, since they could cause strokes, whereas many AVMs in other places in the body go undetected because they are not threatening (Bokhari and Bokhari) .

Retrieved from: https://www.mayoclinic.org/diseases-conditions/brain-avm/symptoms-causes/syc-20350260
  • Arterio: relating to arteries (which carry blood away from heart)
  • Venous: relating to veins (which carry blood to heart)
  • Malformation: something that formed abnormally

Brain AVMs are a congenital (from birth) disorder, and the cause of the formation is unknown ("AVM", Cleveland Clinic). It is presumed to be a genetic mutation, and/or a mistake in angiogenesis (the creation of blood vessels from already existing vessels, happening in the womb). 1.34 in every 100,000 people form one, and even those who have one tend not to be aware, as only 12% of people with one are estimated to ever show its symptom--a stroke occurrence. The mortality rate of patients who do have a stroke is from 10-15%. Though it is a condition that one is born with, the occurrence of strokes is most prevalent in young adulthood (Bokhari and Bokhari).

AVM captured through MRI (retrieved from https://www.ncbi.nlm.nih.gov/books/NBK430744/#:~:text=on%20this%20article.-,Figure,-MRA%2C%20neovascular%20bundle)
Ruptured AVM (brain hemorrhage/stroke) (retrieved from https://www.ncbi.nlm.nih.gov/books/NBK430744/#:~:text=Sunil%20Munakomi%2C%20MD-,Figure,-Ruptured%20AVM.%20Contributed)

My Case

I had an AVM in the left hemisphere of my brain, which caused a hemorrhagic stroke at 8 years. I have various conditions related to this and have had three surgeries.

Main conditions post-stroke:

  • Right-side hemiparesis: a type of paralysis that is partial, on one side of the body ("Paralysis", Cleveland Clinic).
  • My paralysis did not include loss of sensation.
  • Spasticity: condition where muscles contract too much or all at once, and not only when it is needed. It causes increased muscle tone, involuntary contractions, and discomfort ("Spasticity", Cleveland Clinic)
  • My spasticity, which is only on my right side, acts up when I am tired, under a lot of stress or pressure (i.e. during performance or during a test), and during exercise or physical exertion. Many of my muscles are generally tight, especially smaller muscles in my hand, wrist, foot, and lower leg.

Surgical interventions:

Only one procedure was technically considered a surgery, and this was where they removed the AVM and blood clot during the event of the stroke. Two succeeding procedures attempted to neutralize leftover pieces of the AVM left behind. These were not considered surgeries because of how non-invasive they were, but they had decent risk. The AVM needed to be removed completely, because having it in my brain could have led to a blockage of blood, causing another stroke. Interestingly, I have done all three of the recommended surgical interventions for an AVM since one or two was not enough to remove it, so it seems like I am a model patient! ("Arteriovenous Malformation," Cleveland Clinic)

  1. Craniotomy: essentially open brain surgery, where a surgeon attempts to remove the AVM. Brain imaging done after this surgery showed that the AVM was not all gone with this surgery, so I had to undergo another intervention.
  2. Embolization: a surgery in which they attempt to close off blood flow to the AVM by insertion of a polymer, done by a catheter. The surgery is less invasive. In my case, the catheter was inserted into an artery in my upper leg.
  3. Gamma ray surgery/radiosurgery: this cauterized the last of my AVM with "beams of highly energized photons"-- lasers, essentially.

A stroke is a neurological emergency characterized by severe lack of oxygen and other nutrients to the brain. It causes the death of brain cells. There are two types:

  • Ischemic: caused by a blockage in the vessels in the brain. The majority of strokes fall into this category.
  • Hemorrhagic: caused by bleeding inside the brain. A hemorrhage refers to any event of profuse bleeding from a blood vessel. This is the type associated with AVMs.
"Blocked artery" shows an ischemic stroke, whereas "Ruptured artery" shows a hemorrhagic stroke. Retrieved from https://www.cdc.gov/stroke/facts_stroke.htm

Symptoms of stroke in the moment:

  • Numbness or weakness (primarily on one side)
  • Confusion
  • Speech and comprehension difficulties
  • Vision difficulties (primarily in one eye)
  • Movement difficulties (i.e. trouble walking)
  • Severe headache

I, thankfully, have no memory of the stroke itself.

An easy way to remember the symptoms is the acronym FAST. Retrieved from https://www.cdc.gov/stroke/facts_stroke.htm

My stroke story

Due to the fact that I was a child, my parents did not presume that I was having a stroke when it happened. According to my parents, I did display many symptoms. I had it during the night, presumably around 2 AM. My mother woke up, feeling like something was wrong with me. She describes that it as mothers intuition which made her get out of bed and check on me. When she found me, I was already on the ground, near my bedroom door. I was presumably trying to crawl to the door and get someone's attention in the house. I lacked the ability to speak. My parents carried me down the steps and to the car, and my right foot was limp and dragging behind me. It happened during December, so my dad tried to make me put on a jacket. I apparently had no problem putting my left arm in, but could not put my right arm in. Since I didn't (and perhaps couldn't) talk, my dad was confused to why, in his eyes, I refused to cooperate. All I did was stare at him. He eventually just zipped up my jacket and we left for Butler County hospital. I live in the southwest corner of Butler County, right next to Allegheny County (Pittsburgh). Pittsburgh's medical system is renowned nationally, and we soon discovered this, but at that point, we'd been receiving medical care from within our county. When we got there, I was put into an MRI and the doctors identified my brain as hemorrhaging. They knew that emergency surgery was in order, but only a pediatric neurosurgeon could handle this, so they immediately sent me to the Children's Hospital of the University of Pittsburgh Medical Center (UPMC) by helicopter. There, I underwent my craniotomy. I am alive because of the time in between when I started hemorrhaging and when I had my surgery: my intervention was not too late. If I would have gotten intervention sooner, I could have gotten away with less brain damage, thus causing less severe symptoms after the fact, but I do not dwell on this idea, since everything still worked out and I am alive. After general recovery from my surgery, I moved to the Children's Institute of Pittsburgh and received care in their brain injury department.

Image on left retrieved from https://www.timesonline.com/story/news/healthcare/2020/12/04/upmc-childrens-recognized-one-most-innovative-childrens-hospitals/3827285001/; image on right retrieved from https://www.post-gazette.com/business/healthcare-business/2019/11/15/Children-s-Institute-wendy-pardee-downsizing-upmc-highmark/stories/201911140147

Post-stroke disabilities

The main conditions I deal with on a daily basis are hemiparesis and spasticity. In my case, both conditions are highly unlikely to cease completely, so adaptation to my circumstances is key. Hemiparesis refers to a type of paralysis that is partial, on one side of the body.

  • hemi: half
  • parasis: partial paralysis, as opposed to full paralysis, which is denoted as -plegia
  • some AVM stroke patients could have hemiplegia: every single case is different due to where the AVM formed and how long it bled (until intervention). Recovery is also dependent on a variety of factors, such as age, which therapeutic and medical interventions a person uses, and genetics.

Complications of paralysis include speech and swallowing problems, atrophy of the muscles, risk of blood clots, heart problems, urinary issues, and more ("Paralysis," Cleveland Clinic). I had a feeding tube for about a month after my stroke due to concerns over choking on food and I did have to learn to eat again; I also had to recover my ability to speak. Both of these tasks were targeted in speech therapy. I was highly encouraged to move to prevent blood clots.

Spasticity refers to a neuromuscular disorder characterized by tightly contracted muscles. It is caused by damage or underdevelopment of the nervous system; in my case, the brain damage of the stroke ("Spasticity," Cleveland Clinic). I have spasticity on only the right side of my body, and it affects my smaller muscles more (hand, wrist, foot, calf). However, spasticity and hemiparesis affect my entire body, because it tends to get out of alignment, and because I compensate with my left side. Compensation overworks the muscles on my left side, causing more problems (such as carpal tunnel).

Treatment

Spasticity treatment

Spasticity can be treated with Botox ("Spasticity", Cleveland Clinic). I get Botox shots in certain muscles in my wrist, arm, and lower leg around every 4 months. Spastic muscles activate more than necessary and much more intensely, so Botox reduces their strength which helps them function more appropriately.

It can also be treated with physical therapy, with techniques such as increased stretching. Oral medications such as Baclofen could also help ("Spasticity, Cleveland Clinic). I need to stretch way more than the average person. However, I do not take Baclofen or other oral medications because they do not target specific muscles (like Botox does), and instead effect the whole body, which may cause adverse side effects on my left side.

Paralysis treatment

Paralysis is adapted to with rehabilitative care. This includes physical, occupational, and speech therapies, aimed to improve function and increase independence. Intervention in therapy can include the adoption of adaptive equipment, which allows those with impairments to do necessary tasks ("Paralysis," Cleveland Clinic). An example of this would be my steering wheel knob found in my car, which allows me to drive confidently with one hand:

Retrieved from https://www.amazon.com/Silver-Steering-Handle-Assist-Spinning/dp/B01EAYUABU 

Another intervention is the use of assistive equipment, such as a cane, wheelchair, or orthotic devices, such as a leg brace:

My first custom brace looked like these. These are Ankle-Foot Orthoses (AFOs) which help with foot drop, which is a specific presentation of paralysis that causes the toes to drag when walking, which can cause risk of tripping and falling. (Retrieved from https://www.delatorreop.com/product/afo-pediatric-wrap-around-dafo-style/) 
I graduated to this much sexier carbon-fiber AFO later on. I have not needed a brace for several years, at least 7. I need to constantly stretch my hamstrings and calf in order to keep my foot-drop at bay. (Retrieved from https://www.ortoped.ca/en/kiddiegait-sup-r-sup.html)

Disability

Disability is "an umbrella term for impairments, activity limitations, and participation restrictions" (Brault, "Census"). The percentage of non-institutionalized Americans with disabilities is 18.7% (Brault, "Census"). Scholars in ethics and and the social sciences have identified four models of disability (Schaab, 222): moral, medical, limits, and social.

The moral model of disability is the old, religious interpretation that disability is caused by sin, whether personal or by the parents. This view is somewhat supported by the Bible (Schaab, 222).

The medical model of disability sees impairments as defects that should be cured. Only then can a person be whole again. It implies that any disadvantages faced by those with a disability are due to their own individual functional limitations. The medical model negatively effects those with disabilities in how it pressures them to fit impossible norms, diminishes their value, and communicates to them that their hardships are their own fault (Goering, "Rethinking Disability").

The limits model of disability calls into question normalcy in the first place. It recognizes that everyone has limitations that they face in some form or another, whether they struggle with academics, relationships, or emotions. Limitations are inevitable because of human imperfection, and disability should be framed in this way (Schaab, 222).

The social model of disability blames hardships faced by the disabled community on society's exclusionary design. Disability is not seen as the diagnosed conditions, but rather, the lack of opportunity due to societal obstacles: it is society that disables a person. For example, a wheelchair user is disabled due to the fact that there are buildings that they could not access, and those with autism are disabled due to the expectation that they must conform to certain behavior expectations. Diagnoses are simply considered impairments, which are seen as atypical physical, mental, or sensory physiology. Many social model advocates understand impairments as neutral phenomenon. For instance, some people blind from birth do not condition their condition negatively. Generally, those with impairments are all disabled by the people who do not give them proper dignity--we face bullying, harassment, and disrespect (Goering, "Rethinking Disability").

I learned about the field of disability studies in my first semester of college, but I'd always been interested in advocating for my community. I wrote this speech in my last year of high school, and part of it was about my experiences with disability. Being disabled for the majority of my life made me naturally veer towards the social model and critical disability theory before even knowing what these were. I explain in my speech that able-bodied people project the negative feelings that they have about disability (usually based on wrong assumptions and stereotypes) onto us, when we are just trying to live and thrive. This causes most the messages that we hear about disability, from healthcare to the media, to be negative: we live in a world that does not allow disabled joy. I also consider how my experience of disability factors into who I am for the better, and state that I would not have the same interests, viewpoints, and attitudes if I did not experience disability. I frame my general experience as positive, but still long for change so that no one else has to face the exclusion and belittling that I faced during my childhood.

"Crip Camp", Netflix 2020

Crip Camp details a historic camp ran by hippies for disabled youth called Camp Jened, and follows its alumni who make notable strides in the disability rights movement. It shows the fight of the disability rights movement from the early 1960s to the 90s with the passage of the Americans with Disabilities Act (ADA).

Judith Heumann is featured heavily in the movie. TIME magazine named her the 1977 Woman of the Year (this was an award given to 100 women, one for the last 100 years, by TIME in an effort to recognize the women they have snubbed for "Man of the Year"). Retrieved from https://time.com/5793652/judith-heumann-100-women-of-the-year/. 

Theological connections

liberative theologies of disability

Liberation theology refers to a Christian frame of reference that gives preference to oppressed and/or marginalized groups in society. It started in Latin America in the 1960s, and states that it was a Christian duty to advance the poor in their self-determination. Its seminal work is Fr. Gustavo Gutierrez's A Theology of Liberation. Key to liberation theology is listening to the disenfranchised group to hear exactly what they long for, and also seeing Christ in the face of the marginalized group. For example, Latin American liberation theologians argue that Christ was impoverished. Other liberation theologies have come along in recent years for other groups, such as Black liberation theology (Rev. James H. Cone) or women's liberation theology. Another key tenant of Liberation theology is that the Gospel favors those at the margins and wants everyone to be treated with dignity. This means that everyone deserves respect and care ("Liberation Theology").

We must first admit that Scripture has somewhat contributed to negative views on disability. Many parts of the Bible portray disability as a consequence of sin. Jesus links physical healing from disability to forgiveness of sin in many instances of miracles (Schaab, 227). Some miracle stories also connect faith and health: after one healing, he says "Your faith has made you well" (Mt 9:22, NRSV). This promotes the idea that disability is caused by a lack of faith, which can be a toxic message to those affected by disability (Schaab, 229). However, Jesus does challenge the notion of disability being connected to sin in one point of the Gospel (Schaab 228):

As he walked along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" jesus answered, "Neither this man nor his parents sinned; he was born blind so that god's works might be revealed in him." John 9:1-3 (NRSV)

So, what is the relationship between God and disability? I will answer this question by presenting two liberative theologies: Jennie Weiss Block's and Nancy Eiseland's.

Jesus as accessible: Copious Hosting by Jennie Weiss Block

Block's thesis does not focus on how Jesus healed the sick and disabled, but why. She argues firstly that Jesus was drawn to caring for all of the marginalized. Second, she says that Jesus healed to prove that he was God and to further the salvation of the world. Finally, she argues that the reason that he healed was because people were lacking access to the community that would help them to become spiritually whole. In her view, Jesus knew that the hardest challenge for those with disabilities was access to society, so healing was a way to remove these barriers. His healings produced spiritual wholeness, and were not simply cures (which restore people's health). Copious Hosting refers to how Jesus embraced everyone, but especially the outcasts. She also reflects on how things seen as weaknesses give us strength (Schaab, 230-233):

"The great paradox of the Paschal Mystery is that human vulnerability is the source of communion in the Kingdom. our route to union with god and with each other is through the sharing of our joys, our tears, our pain, our limitations, and our hopes."

Jesus as disabled: The Disabled God by Nancy Eiseland

All of her life, she was taught that she was given a disability by God to develop her character, along with the aformentioned notion that it was caused by hidden sin. She also saw examples from scripture of figures who suffered virtuously through a disability, accepting it as their cross--such as Job and Lazarus (Schaab, 233). She argues that Christians must reject views of disability as either a product of sin or "as occasion for virtue" (Schaab, 234). Once, leading a Bible study in a spinal-injury rehab hospital, she asked how the individuals knew that God was with them and understanding of their experience. One person responded:

If God was in a sip-puff, maybe He would understand.
A sip-puff is a motorized wheelchair that is controlled by a wire put in the mouth. It is commonly used by quadriplegic individuals. (Retrieved from http://www.orin.com/access/sip_puff/) 

Eiseland imagined Christ in a sip-puff, and in her mind's eye, noticed that while He was not omnipotent, he was also not suffering. Her reflections finally caused her to realize that the resurrected Christ had bodily injuries: holes in the hands, feet, and the side. He was impaired, yet still divine. This liberatory theology asks us to see the face of Christ in disabled individuals by asserting that Christ himself became disabled. He is truly incarnate and opened himself to all human experiences, including disability. Jesus experienced impairments without despairing, which can inspire those with disabilities to embrace their physicality as well (Schaab 234-236).

Law of the cross

Bernard Lonergan

Christians believe that Jesus saves peopled from sin by his life, death, and resurrection. What is harder to understand is why. Why did Jesus have to die? Bernard Lonergan, a Canadian Jesuit philosopher and theologian who lived in the 20th century, proposed the law of the cross to explain why and how this Christian belief works within the greater laws of the world. Fruit falls from trees. The reason and explanation, or the why, is gravity. The scientific law of gravity predicts that fruit will fall from trees in the future as well (Loewe, Christology, 165-167).

"So, Lonergan asks, given a universe in which God saves through the life, death, and resurrection of Jesus, what sense does that make?" (Loewe, 167)

The law of the cross (Loewe, 167):

  • First, sin incurs the penalty of death
  • Second, this dying, if accepted out of love, is transformed
  • Third, this transformed dying receives the blessing of new life

This law applies to more than just Jesus' passion and the salvation of humanity, and more than just physical dying. In Jesus' case, he was sinfully dehumanized by those who killed him. However, death can refer to all types of suffering, such as the fallout post-stroke. It can also refer to dying to oneself or to the world, and/or getting rid of sinful behaviors that have negative effect (Loewe, 167-171). Those who have had brain injuries such as strokes, as well as other disabilities, must die to themselves and accept their circumstances: their "cross". They also may die to the world and its expectations of human flourishing. After they do this, they start to believe in their inherent worth and believe that their impairments do not hold their back.

Suffering accepted out of love can be transformed. By accepting death, Jesus showed Christians a different way forward. Instead of returning the violence, he continued to love, and while this caused his death, he has the last victory because he short-circuited the cycle of sin. This is because evil can only be conquered by its opposite, love. Similarly, one can accept death or suffering with love (Loewe, 168-171). My post-stroke existence was transformed as soon as I accepted the circumstances that I could not change. In that, I died to myself and my pride.

Finally, the transformed dying receives the blessing of new life. In Jesus' case, he was raised back to life, and the battle over sin and death has been won. In the case of human life here on earth, acceptance of suffering and death blesses us with increased freedom and joy. It can be a brand new start, or new life. The law of the cross is not only for Christians: it can be argued that it is a law of humanity (Loewe, 171-173). Suffering's meaning can be transformed by grace. Any experience of suffering can give people newfound understanding, appreciation for life, empathy, knowledge, and more.

"Then I saw between the throne and the four living creatures and among the elders a Lamb standing as if it had been slaughtered, having seven horns and seven eyes, which are the seven spirits of God sent out into all the earth." Revelation 5:6 (NRSV)

How can someone stand while it is slaughtered? Even more so, how can someone stand as if slaughtered? Revelation backs up Eiseland's claim that the glorified Christ is in fact disabled, and it also backs up Lonergan's claim that suffering that is accepted out of love can be transformed. This is the great mystery of the Christian faith.

God of the gaps

This is a theological perspective in which one thinks that gaps in knowledge can account for God's existence. It is used by proponents of Intelligent Design, an anti-evolution Christian movement, in stating that creation is simply too complex to be explained by evolution (Dixon, Science and Religion, 98). The "God of the gaps" phenomenon was first described in 1893 by Henry Drummond, a Christian biologist who argued that evolution was compatible with Christian belief. He explains it (Dixon, 44-45):

Reverent minds who ceaselessly scan the fields of Nature and the books of Science in search of gaps – gaps which they will fill up with God. As if God lived in the gaps? (Dixon 45)

He explains that a theology based on the gaps--our human ignorance--is simply disrespectful towards God.

I have been told my quick and amazing recovery was a miracle from God. However, there are many scientific explanations for my recovery. I had certain advantages that others didn't in recovery. First, I had my stroke as a child while my brain was still changing and developing. This made the process of rewiring my brain so much easier. An example of this is how I was right-handed before my stroke, and when I tried to write with my left, I picked it up with ease. This was neuroplasticity at work. Second, I had support from my family and friends, even people from all around the world. This gave me hope and elevated my mood. Third, I had an extremely amazing medical team which used cutting edge technology to care for me. All and all, I can say that those factors along with many others contributed to my quick recovery. However, I also believe that God was at the center of that. Drummond argued that it is better to have a God that is present in everything rather than just in "the gaps," for example, a few miracles (Dixon 45). I, too, think that God is present in all of these blessings that healed me. Perhaps the existence of God can be better proved through the entire design of the universe, and not just the gaps of it: God designed the brain to be plastic, God gave me the support of love ones, and God gave me smart and capable doctors.

An enormous thank you to the Children's Hospital of UPMC, The Children's Institute of Pittsburgh, and countless others...

Children's Institute staff

Bibliography

“Arteriovenous Malformation (AVM).” Cleveland Clinic. Accessed October 29, 2021. https://my.clevelandclinic.org/health/diseases/16755-arteriovenous-malformation-avm

Bokhari, Maria, and Syed Bokhari. “Arteriovenous Malformation Of The Brain.” [Updated 2021 Oct 7]. In: StatPearls [Internet]. Treasure Island (FL): StatPearls Publishing; 2021 Jan-. Available from: https://www.ncbi.nlm.nih.gov/books/NBK430744/

Brault, M. "Americans with disabilities: 2010." United States Census Bureau. July 2012. https://www2.census.gov/library/publications/2012/demo/p70-131.pdf

Dixon, Thomas. Science and Religion: A Very Short Introduction. Oxford University Press, 2008. https://www-veryshortintroductions-com.ezp.scranton.edu/view/10.1093/actrade/9780199295517.001.0001/actrade-9780199295517

Georing S. "Rethinking disability: The social model of disability and chronic disease." Current reviews in musculoskeletal medicine, 8(2), 134-138. June 2015. doi: 10.1007/S12178-015-9273-Z

"Know the Facts about Stroke." Center for Disease Control. Last date modified May 3, 2021. Accessed December 9, 2021. https://www.cdc.gov/stroke/facts_stroke.htm

Lebrecht, James, and Nicole Newnham. dir. Crip Camp. 2021. Higher Ground Productions, 2021. Netflix.

"Liberation Theology." In Encyclopedia of Diversity and Social Justice, edited by Sherwood Thompson. Rowman & Littlefield Publishers, 2014. http://rose.scranton.edu/login?qurl=https%3A%2F%2Fsearch.credoreference.com%2Fcontent%2Fentry%2Frowmandasj%2Fliberation_theology%2F0%3FinstitutionId%3D4138

Loewe, William P. The College Student’s Introduction to Christology. Collegeville: The Liturgical Press, 1996.

Lozinger, Diana. “Confessions of a Biracial Disabled Woman.” Carnegie Mellon University Department of English. February 2020, https://www.cmu.edu/dietrich/english/mlk/2020/diana-putri-lozinger.html

“Paralysis.” Cleveland Clinic. Accessed October 29, 2021. https://my.clevelandclinic.org/health/diseases/15345-paralysis

Schaab, Gloria L, If God is For Us: Christian Perspective on God and Suffering. Winona: Anselm Academic, 2016.

“Spasticity.” Cleveland Clinic. Accessed October 29, 2021. https://my.clevelandclinic.org/health/diseases/14346-spasticity

“Stroke Information Page.” National Institute of Neurological Disorders and Stroke, National Institutes of Health. Last date modified April 23, 2021. Accessed December 9, 2021. https://www.ninds.nih.gov/Disorders/All-Disorders/Stroke-Information-Page

The New Oxford Annotated Bible. New Standard Revised Version with the Apocrypha, 4th ed., Oxford University Press, 2010.

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