1 A magazine brain community Issue #1 Premiere Issue! April / May 2013 In This Issue: Who s Who in This Family Now? by Rosemary Rawlins Mapping New Directions in Caregiving by Janet M. Cromer The Slow Crawl Brain Injury Recovery by David Grant Brain Injury Grief: Fact or Fiction? by Janelle Breese Biagioni Make Your Life s Sry Better Journaling by Barbara Stahura Where is Love? by Matw Cassondra Brown Families Caught in Aftermath PTSD: The Invisible Emotional Wounds by Marilyn Lash TBI PTSD: Navigating Perfect Srm by Marilyn Lash Helping Children Brain Injuries Succeed in School by Janet Tyler A Better Approach Finding a Job after Brain Injury by Dawn Westfall Reading Room Book Reviews Compliments ndbin.org Toll-free Fax Fax
2 Our goal is provide highest quality, individualized transitional long term care persons acquired brain. Nathan D. Zasler, MD Founder, CEO & Medical Direcr Tree Life Services, Chief Edir Nathan D. Zasler, MD Fax Administrative Offices 3721 Westerre Parkway, Suite B Richmond, Virginia 23233
3 Table Contents A magazine brain community Welcome from Lash & Associates Publishing/Training Publisher s Letter by Marilyn Lash, MSW...5 Edir s Letter by Barbara Stahura, CJF Family Matters Who s Who in This Family Now? by Rosemary Rawlins...6 Caregiver s Compass Mapping New Directions in Caregiving by Janet M. Cromer, RN, MA, LMHC...8 New Horizons The Slow Crawl Brain Injury Recovery by David Grant.. 10 Stepping Snes Brain Injury Grief: Fact or Fiction? by Janelle Breese Biagioni, RPC...12 Telling Your Sry Make Your Life s Sry Better Journaling by Barbara Stahura, CJF..14 Veteran Voices Where is Love? by Matw Cassondra Brown...16 Families Caught in Aftermath PTSD: The Invisible Emotional Wounds by Marilyn Lash, MSW...18 Clinical Corner TBI PTSD: Navigating Perfect Srm by Marilyn Lash, MSW Kids Club Helping Children Brain Injuries Succeed in School by Janet Tyler, PhD...24 Provider Points A Better Approach Finding a Job after Brain Injury by Dawn Westfall, MS, CCC-SLP.26 Reading Room & Resources Book Reviews Resource Page & Advertisers...30 Issue #1 - April / May 2013 Mission Statement Brain Injury Journey - Hope, Help, Healing helps persons brain, families, providers successfully navigate challenges live a full satisfying life. We fer empowering personal sries, interviews experts, clinical updates research findings. Above all, we provide a community enhance hope foster healing after brain trauma or disease. Publisher Lash & Associates Publishing/Training, 100 Boardwalk Drive, Ste. 150,Youngsville, NC Tel Fax President Marilyn Lash, MSW CEO Bob Cluett Brain Injury Journey Edir-in-Chief Barbara Stahura Graphic Design Bill Herrin Advertising Bob Cluett, Nick Vidal Subscriptions Nick Vidal Edirial Inquiries Marilyn Lash Edirial Policy Brain Injury Journey is published six issues per year. Lash & Associates Publishing/Training does not endorse, support, or recommend any specific method, facility, treatment, program, or group persons brain. Any inquiries or concerns about an individual s health, treatment, recovery cannot be addressed should be discussed a health care practitioner. Advertising rates Please call inmation on rates distribution. Distribution Subscription Brain Injury Journey is available electronically in print. Sign up free online subscriptions or paid print annual $48 subscription six issues at: /brain--journey-magazine Letter Edir Policy We welcome comments feedback, but please limit letters 300 words. Published letters may be edited spelling, grammar, length. The writer must include name, address, , /or phone number contact. Lash & Associates reserves right refuse letters publication, submission does not guarantee publication due space limitations. Opinions in Letters Edir are solely those author do not represent Lash & Associates. Brain Injury Journey 2013, is published six times a year by Lash & Associates Publishing / Training. All rights reserved. No part this publication may be reproduced in whole or in part in any way out written permission from publisher. For reprint requests, please contact Bob Cluett, CEO, via at Back issues can also be ordered at 3
4 Publishing/Training Leading publisher on brain, blast concussion in adults veterans. Call our latest catalog, we ll get things in order! The 2013 Lash & Associates catalog is available by request, our entire selection is on our website 24/7 at Call or check us out online day, have a better morrow! Adult Catalog Lash & Associates Publishing/Training 100 Boardwalk Drive, Suite 150, Youngsville, NC Tel: (919) Fax: (919) Call us a FREE catalog! Leading Source Inmation on Brain Injury in Children, Adolescents, Adults Veterans Lash & Associates Lash & Associates Publishing/Training 100 Boardwalk Drive, Suite 150, Youngsville, NC Tel: (919) Fax: (919) Hope... comes in many ms Helping Brain Injury Victims Lash & Associates Publishing/Training ir 100 Boardwalk Families Drive, Suite 150Nationwide. Youngsville, NC Tel: (919) Fax: (919) LAW-MED Thomas Henson, Jr. Brain Injury Atrney Advocate over 20 Years 2501 Blue Ridge Road Suite 390 Raleigh, NC LawMed.com THIS IS AN ADVERTISEMENT. Henson Fuerst Atrneys are licensed in NC, VA, GA, NY DC, will associate co-counsel in various jurisdictions assist se claims. Clients not accepted in states where unauthorized by state bar rules. SERVICES MAY BE PERFORMED BY OTHERS IN THE FIRM. 4
5 Letter from Lash & Associates by Marilyn Lash We are so proud introduce first issue Brain Injury Journey Hope, Help, Healing. We spent a lot time choosing our magazine s title because we wanted it reflect our philosophy as well as needs, issues, concerns we hear every day. Words matter, so we have chosen m carefully. Brain Injury - We address all types acquired brain injuries those due internal causes such as brain tumors, infections, or stroke as well as traumatic injuries due external ces collisions, explosions, assaults, falls, or gunshots. Journey - Living a brain is an ongoing process or journey that is constantly changing, challenging, rewarding everyone involved. There is no finish line a tape cross, cheering crowds, a celebrary party. Rar it is getting up facing each day conviction purpose rebuilding one s life. Hope - This is what survivors, families, caregivers tell us is so important. Hope is what sustains m in ir darkest periods. Hope is vision that lights darkness creates new possibilities a better future. Help - As African proverb says, It takes a village raise a child. The same is true brain. Help comes from many people in many ways. The individual who survives a brain enters a community that is much larger than friends family. It includes clinicians, rapists, educars, advocates, providers, insurers, many, many more. They share goal ensuring that treatment brain is more than just survival. Healing - There is no fixed timetable recovery. The healing process after brain is much more than a neurological recovery. Healing is multidimensional. Yes, it is physical, but it is also cognitive, emotional, social, familial, spiritual. That is our philosophy, that is foundation this magazine. We hope find articles, inmation, insights valuable helpful in r journeys, wher y be personal or pressional. You are all valuable members this very special community. Please help us spread word encourage r friends associates subscribe at lapublishing.com/brain--magazine/ From Edir-in-Chief by Barbara Stahura Nearly 2 million people annually sustain a brain in United States, more than 5 million live permanent disabilities related brain. Fortunately, public awareness brain is growing, much research is being devoted prevention, treatment, recovery. Yet despite all tremendous advancements being made, most do not address this fact: Brain begins ends in family. What happens family when so many aspects ir lives have been turned upside down y struggle live ir new normal? When many pressionals in field do not adequately underst changed dynamics realities living brain, how can families bridge gap between what is happening m what y need know survive, or even thrive? We strive fill at least some that gap in pages this magazine. Our mission: Brain Injury Journey - Hope, Help, Healing helps persons brain, families, providers successfully navigate challenges live a full satisfying life. We fer empowering personal sries, interviews experts, clinical updates research findings. Above all, we provide a community enhance hope foster healing after brain trauma or disease. Our writers reflect brain community whom this magazine is devoted: people brain who come from civilian military backgrounds, family caregivers family members, expert providers such as speech pathologists, rapists, educars, mental health pressionals. We will do our best cover a spectrum pics provide helpful, valuable inmation not ten available anywhere else, presented in clear, reader-friendly language. For person who is injured family alike, coping a brain, especially in early days, can feel like end world. You may feel isolated alone, believing that no one else understs what are going through all challenges face. But we do underst because we have been re, we can tell it is not end. The journey ahead is not easy, likely will be called upon make many adjustments. Know that we are here will gratefully share what we have learned help along way. 5
6 Family Matters Who s Who in This Family Now by Rosemary Rawlins It happens out warning. One person takes hit, bullet, or fall, while loved ones witness wreckage. When traumatic brain strikes a family, everybody suffers. Survivors emerge from a fog that slowly gives way bewildering awareness limitations, deficits, a new way living. Family members wait out initial hours days following in cliffhanger mode, hanging on any branch hope in reach. One family life ends, anor begins. Depending upon which family member is injured far, mor, child, sister, or bror roles flip, responsibilities shift, stress mounts. Until extent is known, healing begins, remaining family members take on what added responsibilities y can, learn do out out counsel, connection, comt someone y once relied on. In my case, my husb, Hugh, was hurt. On April 13, 2002, a car hit him as he rode his bicycle home from an afternoon workout. He was ty-six years old, athletic, smart, seemingly invincible. To his children, he was Huperman, dad who would always protect defend. He was main breadwinner in our household. After two emergency brain surgeries in three days, Hugh was in a coma. In space those first harrowing days, I became a single parent. Being in charge his medical care felt like a monumental task hle alone, but I also had communicate his employer, pay our bills, manage our insurance policies, my part-time job, house, family. Hugh was sent home after thirty-three days wearing a helmet on his head (a chunk his skull had been removed relieve brain swelling). I held tight gait belt strapped around his waist balance. His deficits were 6 numerous, some had not even revealed mselves yet. Our twin daughters, Anna Mary, age 14 once center our universe, were now left f side or enlisted as caregivers. Can stay Dad while I go out sre? I d ask. Remember be sure he keeps his helmet on. They both did ir best help out, but I know it was hard hard see ir far disabled, hard care a parent who used care m, hard not complain about it, because re were so many competing emotions. In truth, y lost both parents a period time because I was focused solely on Hugh his treatment. Children are ced grow up fast after a parent has a brain. Their needs will not come first may not even seem important. But over time, experience will have taught family members lessons about love, commitment, patience, overcoming adversity. Our family made it through hardest first two years, looking back, here s what helped us. Structure: Keeping children on schedule school extracurricular activities so re was a continuation familiar past activities. This requires family friends chip in driving or tasks. Support System: Relying on emotional support help from family, friends, church, teachers, rapists, docrs. Surrogate Parents: Close family friends stepping in give children needed attention help when parents are overwhelmed. Open Communication: Being honest open each or s feelings venting, laughing, crying ger as a family. Reasonable Expectations: Letting kids be kids. Asking only age-appropriate caregiving help from children, only when absolutely necessary. Using Our Strengths: Anna was great at helping in kitchen. Mary liked stay up late, so she helped out when night nurse was f duty. Accepting: Acknowledging that life was different, but we re all in this ger. Encouragement: Bolstering each or s spirits during hard times.
7 Reaffirming: Telling each or we loved each or ten. Staying flexible: Understing that last minute changes might happen, that roles would continually shift change as Hugh s health improved. Life families will be different ten difficult after one member sustains a brain. But in long run, some families may grow closer than y ever dreamed possible. Ten months after his, Hugh earned his driver s license back, one evening, he drove himself gym work out. A while later, a fireman called house tell us that Hugh had suffered a seizure. Mary Anna swung in action. I ll come hospital, Mom, Anna said. It will be okay, Mary said, rubbing my back, I knew it would, as long as we all had each or. Rosemary Rawlins is author Learning by Accident, a memoir. You can learn more about Rosemary at: Neuro Community Care L LC Brain Injury Support Services Neuro Community Care The right support, at right time NCC recognizes complex needs those brain injuries lifelong challenges y face NCC provides cost effective, community based support individuals brain injuries, neurological, cognitive or physical challenges NCC Case Managers Life Skills Coaches act as a bridge advocate on client s behalf; exploring community resources, making referrals provides ongoing training NCC Case Managers work collaboratively clients, caregivers providers in developing goals; accessing services providing advocacy so that needs are met NCC Life Skills Coaches provide ongoing individualized skills training persons brain or or cognitive impairments in ir own environments NCC has considerable experience providing services support military personnel, veterans ir families Capital Blvd., Suite , Wake Forest, NC fice fax What makes NCC unique is that our services are provided in individual s home or community environment are functionality based 7
8 Caregiver s Compass Mapping New Directions in Caregiving by Janet M. Cromer, RN, MA, LMHC Welcome Caregivers Compass! Are a caregiver a family member who has a brain? Although may feel alone, are in good company on r journey. More than 65 million Americans care a family member at home. Many m care a person who has one many types acquired brain. The crisis may have begun a traumatic brain, blast, hypoxic brain, stroke, tumor, or infection. The causes are different, but some consequences are universal. In an instant, a family member is plunged in wilderness intensive care units, rehabilitation hospitals, neurology appointments, n community. All a sudden are ficially declared a caregiver out a compass, job description, or training manual. This uncharted terriry comes a mountain responsibilities, a eign language, unfathomable scores. Not mention insurance limits. You are assigned be guide coordinar. No wonder call out, Help! I m lost in here! Where s my road map? Who is a brain caregiver? Caregivers are a diverse dynamic group. We each bring a unique life sry personality role. We are spouses, partners, parents, siblings, children, close friends. We might not even think ourselves as caregivers because helping someone we love comes naturally as a parent or husb. Ors prefer term care partner when y collaborate, assist, support survivor. Children are ten overlooked or hidden caregivers. A survey by National Alliance Caregiving estimates that at least 1.3 million children in U.S. between ages 8-18 care a sick or disabled sibling, parent, or grparent. Many care a bror or sister while parents work, or help a parent learn read again. Brain is well represented among diagnoses studied. For adult caregivers, our titles roles change as journey progresses. In beginning, most us start as a crisis manager juggling ugh medical decisions, family life, even a job. Then, during months or years rehabilitation, we become a coach, maybe even a drill sergeant. A child becomes Dad s teacher as he explains how spell or play a computer game. Persons who have a severe brain might require complex medical care at home. That caregiver feels more like a nurse physical rapist than a wife as she gives tube feedings, suctions a tracheomy, moves her husb s weak legs through a range motion exercises. Brain can contribute problems that affect memory, mood, cognition, behavior. This means that caregivers ten become counselors, behavior coaches, emergency responders. Fortunately, re is now effective treatment available conditions such as depression or post-traumatic stress disorder (PTSD). However, both military civilian families can feel at a loss underst help a son or spouse whose personality behavior have changed dramatically. Recovery requires a combination good treatment, time, eft. By time have been a caregiver a few years, probably summarize r role as The CEO Our World. You might take pride in r valuable contributions, even as worry about finding vocational training r wife or a supportive place r daughter live as get older. There is one important title that every family caregiver learns earns: Fighter Advocate! We should be awarded trophies advanced skills commitment that empower us partner survivor live a full meaningful life every day. We grow, promote growth in ors. We start support groups share our experiences. We get involved tell our sries change healthcare system. We rally legislative changes, educational rems, resources, disability rights. On one h, we are strong, powerful resilient. On or h, we can become exhausted overwhelmed. Did know that caregivers have higher rates chronic disease depression than 8
9 non-caregivers? We are also vulnerable traumatic stress from caring a person who suffers, is in pain, or very disabled. There is even a m severe mental physical exhaustion, known as compassion fatigue. This condition leads a depletion resources interferes every dimension life. What helps prevent some health hazards associated caregiving? How can we replenish our strength, motivation, empathy at each stage? Realistic resilience skills No matter where are along continuum caregiving, re is an essential ability that tifies sustains body, mind, spirit. I call it realistic resilience. Resiliency has been defined as ability cope well high levels ongoing, disruptive change. Resiliency allows us bounce back, adapt changes, move ward. The realistic part comes in because resilience requires us recognize acknowledge changes losses, embrace what is real now. We don t pretend, or deny our feelings. We push past edges our comt zone enter new terriry, even if we feel anxious or insecure. That bravery allows us use active coping strategies creativity solve problems, learn new skills, care ourselves ors. Two key categories resilience in particular have been shown reduce risk health problems compassion fatigue stress resilience emotional resilience. You have probably heard stard advice prioritize time rself, set boundaries, put r own oxygen mask on first. Tried true advice. However, Caregiver s Compass will supplement what already know innovative approaches make r own. For instance, here is a practice, called a body scan, try right now. Sit comtably in r chair, close r eyes, bring r attention r breath. Just brea naturally, in out a few times. Starting at p r head, slowly draw r attention down length r body, front back. Keep r mind open non-judgmental. Just notice any spots that feel sore or tense. Notice any areas where worry or anger might be hiding out? Let r breath flow easily. You might try inhaling in a sore spot soo area, n exhaling a bit pain. Note any feelings might want explore later in r journal or a conversation a friend. Sit as long as like. Brea, stretch, n smile continue r day. We ll delve in serious issues such as caregiver trauma, compassion fatigue, mental health concerns. Prevention is best medicine. So, we will fer explanations along proven techniques minimize worst kinds stress. We will show new ways reverse stress response, manage troubling emotions, approach responsibilities more confidently. The pics that caregivers sometimes consider taboo, yet dive in each or, will also find a voice in Caregivers Compass. Topics such as caregiver s sexuality, anger, need an identity beyond caregiving deserve exploration. There are many routes becoming a resilient masterful caregiver. Join us ge a strong inventive community sharing our journey. Janet Cromer, RN, MA, LMHC is a psychiatric RN author Pressor Cromer Learns Read: A Couple s New Life after Brain Injury. Janet speaks nationally on family pressional caregiver issues including stress resilience, traumatic stress, compassion renewal, seasons caregiving, creativity healing. See more at 9
10 New Horizons The Slow Crawl Brain Injury Recovery by David Grant So much life happens between those moments normalcy. The sun rises, sun sets, many us go work, care our children, spend time those we cherish, never give much thought fact that life can change dramatically in blink an eye. And so it was me in November On a cold, blustery day here in New Engl, my life was ever changed. Local police estimate speed teenage driver at mph who broadsided me while I was cycling. In two ticks a clock, my life unexpectedly abruptly changed course. I was thrown from my trusty bike in strange new world traumatic brain. I did not n know scope America s silent epidemic in day s society, blissfully unaware that more than 1.7 million Americans a year sustain a TBI. Recovery from a brain is like nothing I have ever experienced. If are a survivor, already know this. If are a family member or a caregiver, know this as well. But live life as a brain- survivor, re are no past experiences I can draw upon that have helped me navigate this new uncharted life terriry. 10 In days after my cycling accident, I saw docrs many specialties. The orthopedic docr let me know that my broken arm would heal, that I would be in a cast a couple months, feel a bit pain six months. Right on cue, at six month mark, my arm pain spped. But recovery from a brain cannot be defined by an end-date circled hopefully on a calendar, though I thought this at first. As my broken body began its slow crawl ward wellness, as my bones knitted, as my bruises faded from black yellow n memories, extent how my brain was affecting my life became clearer. My journey my new normal may or may not be typical. Brain injuries are like snowflakes no two are alike. In days after my, I had a CAT scan, an EEG, or tests see if my cognitive abilities were compromised. I passed all my early tests high honors was congratulated by many in pressional community dodging a bullet. But all was not well. Most all my sympms, those cues that let me know I had sustained a TBI, came slowly, in many cases weeks after my. Word-finding issues were among my first challenges. Then came significant
11 challenges my memory. We can add list a couple new-found speech impediments: stuttering aphasia. Yes, on outside, I looked normal. But under hood, it was becoming very clear that something was wrong. Anor trip neurologist revealed a new, multi-facetted diagnosis. Grateful that my body was mending, still confused over some my newest challenges, I was ld I have a very clear-cut case post-concussive syndrome. At this same time, several months after my accident, I was also diagnosed post-traumatic stress disorder. By nature, I am hard-wired be a problem solver, an overcomer. Whenever a life event comes pass, optimist in me tries pull whatever positive I can from experience move on. But a brain, re is no end-game. There is no magical date on some future calendar page that is circled in red, perhaps a smiley face, that I await. I have learned over last couple years that recovery from brain is lifelong. I have learned that brain recovers in its own time, sometimes at glacial speed. And if I try hurry process, I am left disheartened frustrated. Life as a survivor brain is vastly different than I ever expected. Challenges I never considered in my old life can overwhelm me. Akin learning drive a new car, I am slowly learning how navigate through life my new limitations. But re is good news. By being respectful my new limitations, surrounding myself people who love me, who care about me, who want me as well as I can be, I am building a new life. Yes, much it is more difficult. But much it is surprisingly more wondrous. I have slowed down a pace I never had bee now take time see, feel, experience my world deeper appreciation than I ever thought possible. And that, I am proundly grateful. David A. Grant is a writer based in New Hampshire author Metamorphosis, Surviving Brain Injury. A survivor a harrowing cycling accident in 2010, David openly shares his experience, strength, hope as a brain survivor. Recently recognized by Brain Injury Association America, David s book fers real-world insight in life as a brain survivor. Unique Innovative Programs Adults Brain Injuries Their Families Locations in Huntersville Asheville, NC Day Program Residential Program Therapeutic Horseback Riding Community Support Veterans Caregiver Support Groups Black Farms Road Huntersville, NC fice fax 11
12 Stepping Snes Brain Injury Grief: Fact or Fiction? by Janelle Breese Biagioni, RPC Grief is most ten associated death. While it is true that death a loved one (family member, friend, or pet), at times, death people we do not know (Sy Hook Elementary shooting) will catapult us in grief journey, death is not only cause grief. Although death is an important reason, re are or losses in life that we also need grieve. These o are life-changing will solicit same grief responses as death does. Society has slowly recognized significant life events as also being a source sorrow cause grief. Events such as divorce separation, transitional losses (moving a new community or job loss), developmental losses (children leaving home) are also ways in which we experience feelings sadness, depression, hopelessness, sorrow. To heal from se experiences move ward in life, we must grieve mourn. Furrmore, advancement technology medicine, people tend live longer; however, many are compromised chronic illness, such as diabetes or heart disease. While se are ten manageable, it is not unusual experience some level loss as a result. It could be that people are no longer able work in same capacity, or y may have a substantial change in lifestyle, or way y view mselves in society becomes grossly skewed, ree y begin grieve. Then we have what I identify as extraordinary grief resulting from a disease such as Alzheimer s or a catastrophic such as a brain. This kind grief is pround. People must grieve who y were, family also grieves person who is no longer re, albeit physically present. Sadly, I think society as a whole is only beginning underst how pround this type grief is. The Complexities Grief In 1969, Dr. Elisabeth Kübler-Ross published a revolutionary model grief in her book On Death Dying. These five stages, commonly referred as DABDA, are denial, anger, bargaining, depression, acceptance. The flaw was not in her model. It was in society s interpretation it. It was believed that people had go 12 through all five stages in order given, or y were grieving wrong. Let me tell : only wrong way grieve is not grieve. Prior Kübler-Ross death in 2004, she explained model was not meant be a list absolutes that one had do in any specific order heal, but that it was a list potential grief responses a person may experience. I have come learn, both personally pressionally, that list responses is far more expansive. Dr. Alan Wolfelt s Companioning Model identifies potential grief responses as shock, numbness, disbelief, disorganization, confusion, searching, anxiety, panic, fear, physiological changes, explosive emotions, guilt regret, loss, emptiness, sadness, relief release, finally, reconciliation healing. The grief journey is complex. It is a process not an event. It is not time specific, nor is it orderly predictable. Moreover, process is fraught crazymaking stuff. It is a lonely path. It feels like nobody understs what are going through. That is true. No one can truly underst how anor person feels; however, those who have walked this journey never get what y felt or experienced. They can be a tremendous source strength courage. I mentioned earlier that only wrong way grieve is not grieve. In addition that, it is important remember that grieving is not end means. It is only beginning! I say this because grieving is about how we feel on inside due what has happened in our life. If one is allowed truly feel grieve, this will lead mourning. Mourning is process taking those feelings from inside outside. It is giving expression how we feel. This may be done in a variety ways, such as funerals, talking, writing, art, music. Wolfelt describes it like this: Mourning is grief gone public. The only way move through or reconcile mourn feelings grief is find a safe comtable way express those feelings. This applies all types loss, including those associated brain. Understing grief journey its connection brain is important survivors, family members, friends, pressionals alike. It s important because if do not acknowledge losses that arise from having a brain, it will be difficult if not impossible move ward in life. This is true people who are living outcome a brain, it is true those in relationships m, including spouses, children, family, friends. And it is especially true pressionals involved because it is our responsibility help facilitate process grieving mourning
13 se individuals ir families. As stated, process is chaotic. Add it that loss is death-like experience a person no longer resembling who he or she was prior being injured, crazy-making is exacerbated. Interference Grief After Brain Injury In my work I have discovered several reasons that interfere grief journey following a brain. They are: 1) Society s incomplete list loss an unrealistic timeline grieve mourn. Society accepts need grieve publicly mourn physical death a loved one, but re is little understing need grieve death a personality when person is alive. The person may have physical /or cognitive limitations; however, those individuals ir family living such pround change are ten left reeling in unfair comments like, It could have been worse. There is no timeline grieve mourn. Untunately, society operates on thought that people need only three days bereavement leave /or that in a few months everything everyone will be back normal. It doesn t work that way both physical non-physical deaths. Remember this: It isn t time that heals all, but rar what we do time that heals us. 2) There are layers layers loss experienced by survivors brain by each person connected m. The layers loss following a brain uniqueness in realm grieving are overwhelming many. To adequately grieve se layers loss, it requires those involved explore determine primary secondary losses brain how this impacts m. This applies both survivor ir loved ones. Once layers are identified, n people can begin work through ir feelings. Reflect on life losses that have experienced, including brain. Do feel that were able fully acknowledge grief that resulted from r loss? Do feel that ors undersod or supported in grieving (feeling) mourning (giving expression those feelings) following loss? Loss associated brain can be physical / or cognitive, but re may also be additional losses in relationships, lifestyle, employment, in person s sense self. Each loss requires reflection, expression, acknowledgment bee healing acceptance a new life can take place. Janelle Breese, RPC, is an author, speaker, counselor expertise in grief, loss, life transitions, brain. She resides her family in Vicria, BC. She is author A Change Mind: One Family s Journey through Brain Injury upcoming book, Life Losses: Healing a Broken Heart. Visit her website at com follow her blog at blogspot.com. She can be contacted at com Sp by share rs. Come blog us about brain! Interesting, inmative daily postings by survivors, families, caregivers even staff Lash & Associates. You ll laugh; ll cry; ll want tell r own sry this is place tell it! Post r comments on our blog articles share r experience. It s easy join this blog, so come on...give us r two cents! Lash & Associates Publishing/Training 100 Boardwalk Drive, Suite 150, Youngsville, NC Tel: (919) Fax: (919) /blog Leading Source Inmation on Brain Injury in Children, Adolescents, Adults Veterans 13
14 Telling Your Sry Make Your Life s Sry Better Journaling by Barbara Stahura, CJF When a hit--run driver left my husb, Ken, a brain just nine months after our wedding in 2003, I was thrown in chaos caregiving no training no advance notice. Horrendous months followed, as Ken struggled recover as much his abilities his mer self as he could. I struggled care him ( not so much myself) while picking up parts our life he had merly hled. A counselor ld me I had secondary traumatic stress, a condition I had never heard, but she was right. Fortunately, I had earlier discovered a practice that became my saving grace during this time. Over years, I had kept a journal periodically, day after Ken s accident I began journaling in earnest. My journal went everywhere me hospital, in- out-patient rehab, docr s appointments I filled pages every day. This was almost instinctive, since my confusion, anger, grief desperately needed an outlet. As I later discovered, telling sry se days especially my feelings about m pages my journal was one best things I could have done. Unknown me at time Ken s accident, expressive writing, or writing down our thoughts feelings about an experience, has been shown in numerous studies provide rapeutic benefits body, mind, spirit. A journal is an excellent place this kind writing, since its pages accept whatever have say out judgment or criticism. As Kathleen Adams, LPC founder direcr The Center Journal Therapy, says, In moments ecstasy, in moments despair, journal remains an impassive, silent friend, ever ready console, confront, contain, cheer on. Its potential as a ol holistic mental health is unsurpassed. In r journal, need not be concerned being a good writer nor about spelling or grammar. No prior experience is needed. All need is give rself permission write, write as honestly as can. Take precautions keep r journal paper or electronic private, can pour out r heart, dive 14 deep in r soul, find release healing. From re, can begin envision possibilities r new, post- sry. Everything is Sry All human beings are born srytellers, being injured or being a caregiver doesn t change that. We live by sry literally could not survive out it. In fact, Brains are organs sry, changing match needs ir environment, specialized underst sry, sre sry, recall sry, tell sry, writes Lewis Mehl-Madrona, MD, PhD, in his book Healing Mind Through Power Sry: The Promise Narrative Psychiatry. Everything is sry, including our identities, our selves, our meanings purposes, our ories about world. After a brain dramatically alters familiar sry r life, it becomes crucial discover create a new sry if healing is take place. Learning move from r mer sry r current one literally changes r life, as well as r brain. You function better, empower rself, open door positive change. For instance, say continually yearn way r life used be prior brain. By focusing on r old sry what have lost what can no longer do lock rself in a painful place where healing is not possible. But when find a way create or discover a new sry what still have, can create, are able accomplish r life moves ward. Use Your Journal Start Making Changes Anita Roddick, late founder The Body Shop, said, Every change begins a sry. And can begin changes required by r post- life in pages r journal. The first step is begin writing sries r current life, in small pieces over time ( can journal effectively in only five ten minutes a session). Then can envision possibilities future slowly move ward making m a reality. You may be surprised at many possibilities, large small, that open up. The way tell r sry need not be fancy or particularly creative (although can later revise r journal entries in something more mal if like). The idea is let words flow page as little editing or censoring as possible. This allows r subconscious thoughts come surface, bringing
15 light nuggets insight inspiration that can fer hope, healing, a way ward. (One caution, though: If writing about a traumatic experience makes feel excessively frightened or apprehensive, please do not write just n. Wait until re feeling stronger or can talk a rapist.) You may be surprised by what discover. In my journaling groups people brain family caregivers, many participants have reached new levels self-understing. They tend realize hidden strengths, over time, find more acceptance ir situation use that place as a lift-f point in future. Not all insights produced by journaling are dramatic. But y don t have be, eir. By simply letting rself write whatever comes mind, will amass sry r life over time, in all its juicy, dull, glorious, mundane details. And as continue, will notice patterns, trends, recurring thoughts, which can change as needed yes, by writing about changes want see how will make m happen. Benefits Journaling Journaling intention personal growth empowers. It also fers an opportunity self-exploration self-expression that simply talking or thinking cannot do. The results studies expressive writing show that it can enhance physical health strengn immune system; produce long-term, positive changes in mood; boost working memory (which can improve permance at school or work); improve r social work life. For someone a brain, it can also Enhance written verbal communication skills Stimulate cognitive executive skills (following direction, organizing, planning, sequencing, attention, processing, etc.) Promote post- self-awareness (deficits strengths) Assist in planning post- future Promote dialogue understing family members ors Encourage self-expression after a trauma major life disruption Prepare community re-entry Offer community support when done in a facilitated group. Journaling fers a kind self-expression self-empowerment that traditional postbrain rapies do not. By recording our words on page, our journal becomes a kind container, holding our sries making m more manageable. Journaling is an effective, simple way by which can make r sry r life better. Barbara Stahura, certified journal facilitar, is co-author, along Susan B. Schuster, MA, CCC- SLP, After Brain Injury: Telling Your Sry, first journaling book people brain. She presents journaling workshops around country people brain, family caregivers, ors, is a member faculty Therapeutic Writing Institute Lash & Associates speakers bureau. She lives in Indiana her husb, Ken Willingham, a survivor brain. 15
16 Veteran Voices Where is Love? by Matw Brown Cassondra Brown Matw s Voice When I got out military in Ocber 2005, I found myself alone scared, jumping from house house, staying friends or sleeping in ir cars. Then in December I met a wonderful woman. Cassondra I married in July 2007, soon after, our son was born. Something was wrong me emotionally. My physical mental disabilities were affecting me more more, but I didn t really think much it. I was quick temper yell at our puppy. I was having problems at my job as a prison guard. So I decided change my career. But I had no real job skills or trade from military, being a prison guard doesn t set up join white collar job field. With help from some veterans programs a person willing take a chance on me, I started work in Federal HR. I realized my mental state needed change. So I went VA started medication counseling. Thinking everything was going be happy go lucky, I ok all medication, pill after pill which was not smartest thing I have ever done. After almost being killed by that cocktail meds, I quit taking m alger, believing I could beat my problems on my own. But my roller coaster hate, anger, stupidity charged full-speed wards a brick wall. With no meds no one talk, I started self-medicating, drinking alone every night, sitting on couch playing video games or just staring at TV. I spoke Cassi only when I needed a beer or something eat, or yell at or insult her or ask sex. She begged me spend time our son new daughter. They sat me on couch, I played m, or simply sat re looked at m. Someone would point out that my drinking was getting bad, so I wouldn t drink a few days. But I always went back it my one crutch I couldn t cast f. Some days, I was nice caring. But bad days when I started picking fights, yelling at nothing, screaming because kids were o close me started 16 outweigh good days. Making fun my wife putting her down became my new unhealthy past time. I didn t care or want care. I thought only emotions I needed were my anger sexuality, which consumed me began consume my family. There was no love left in our house. No more sweet lovers kisses or hugs. Just co-existing in same place. Until it all blew up one night in fall I ended up cast out alone, scared, hurt, confused. I hadn t noticed what I was doing my loved ones. Not knowing what else do, I manned up started get help again right kind help. At first I felt strange f-balance but soon realized that I was feeling love positive emotions again. I started speaking my wife as a real person first time in seven years, being truly honest in a normal voice. We have started connect on a level we never have bee. It is amazing. I haven t loved her this much ever, tell truth. PTSD TBI played such a huge role in my life. I let m control me, but now I control m. Getting help is best thing I have done. I am now working on being a real far, husb I should have been all along. I still get mad or upset here re, but I don t explode, when I get mad I have reasons. Cassondra s Voice I married Matw in July The day seemed go perfectly, complete fireworks shotguns. It wasn t r typical wedding, but typical just wouldn t fit us. Once Xer was born, Matw started working day shift. He left work in morning, n came home early evening cracked open a beer. He barely acknowledged me or Xer. This pattern slowly grew worse over years, even after our daughter, Xylaih, was born. In spring 2012, things got even worse. Matw began drink more, one or two beers a night turning in six or seven. The silence between us was replaced by constant tension fear. I felt like I was constantly walking on egg shells. Matw more frequently exploded in anger. Anything seemed push him from sitting quietly drinking yelling at p his lungs smping around. He started making frequent hurtful, rude comments me, such as, Do I look like I care? Why are still
17 talking? I began feel I could do nothing right that I was only good sex. Always on edge around him, I didn t know what would make him mad. The only m attention he ever gave me was constant attempts at sex or anger. He ignored me if I needed talk or vent about something. Or times he made me feel stupid feeling way I did. I felt completely alone, isolated, hated. He didn t just ignore me; he also ignored our kids. Many times I saw kids do everything get his attention, he eir ignored m completely or ld m go away. He just couldn t be bored any us. By Ocber 2012 I had reached my breaking point. The kids were even beginning mimic way he treated m me. That was final straw. I asked him leave, we signed separation paperwork. I thought this was truly end our marriage attempted move on. But Matw was determined make things right. He turned local Vet Center help immediately started rapy. He also spped drinking. Through our phone conversations texts, I could tell he was making amazing strides in right direction. He was opening up expressing his feelings, he actually listened me showed concern my feelings. I saw a whole different side him. With his guard down, he let himself be exposed vulnerable. For first time in a very, very long time I could tell that he did truly love kids me. He just hadn t known how show it. Then we started hang out at house after kids went sleep at night, he actually started show in person how much he cared. It was little things that meant most. After a week or so this, he started coming over during day spending time kids letting me have a little time myself, something he had never done bee. By mid-december he had more than proven his determination maintain se positive changes keep working get better, he moved back in. With help counseling he has come a long way. We actually talk now about everything, anything, sometimes nothing. We enjoy each or s company. Lance Corporal Matw J Brown USMC RET is an aspiring military author who has overcome many struggles living daily life PTSD a traumatic brain now has made it his life goal help ors through se same struggles his writing. Cassondra Brown is wife caregiver retired Marine Lance Corporal Matw Brown. She is a stayat-home mom who aspires help or spouses through struggles living someone PTSD traumatic brain injuries. Intimacy by Matw J. Brown Here we sit Side by side No words pass between us But re is something smoldering Not our love But our hate We still love each or But something has changed My anger has grown worse Becoming hate wards The one I love There used be sparks when Our eyes met Now a single moment eye contact can spark an inferno yelling Screaming And hurtful words Somewhere our lives went astray from what s important: Each or I want express emotions But all I feel is pain, fury Tension No remorse how I act No regret about stabbing things I say Just bringing down my level misery This isn t a relationship Nor partnership Not even a friendship My issues I want fix this I need fix this Can t kill f one thing in my life that I love This time I m real Getting help I need No lip service I love dear This will get better I will get better And treat like beautiful ng woman are. 17
18 18 Veteran Voices Families Caught in Aftermath PTSD: The Invisible Emotional Wounds By Marilyn Lash, MSW Be sure ask r docr if r heart is healthy enough have sex. That s closing line a commercial medication erectile dysfunction. You ve probably seen ad on TV. Attractive couples soulfully gaze at each or gently sip wine as sun sets. Despite long list possible dire side effects, message is clear: A pill will fix everything resre not only sex, but intimacy se couples. If only it were that easy. For so many returning service members veterans dealing post-traumatic stress disorder (PTSD), question may be, Are r emotions ready intimacy? Sex intimacy are very different. While sex is a physical act, intimacy is an emotional connection. As Matw Cassi Brown have shared so openly in ir article, emotional numbness that is sympmatic PTSD is directly connected loss intimacy. Yet it is elephant in room that o ten is not discussed family, friends, physicians, or counselors. When connection between loss intimacy PTSD is not undersod, o many partners take it personally feel unloved, unworthy, unattractive, rejected. Wher dems sex are constant or sex is avoided long periods, loss intimacy can undermine very core a couple s relationship. What is PTSD? A study by Sayers, Farrow, Ross, Oslin in Journal Clinical Psychiatry on Family Problems among Recently Returned Military Veterans in 2009 looked at those who scored positively mental health issues in VA outpatient clinics. Over 75% married/partnered service members reported difficulties ir partners or children. There was a strong association PTSD major depression difficult family adjustment. It s an anxiety disorder that stems from exposure a traumatic event involving actual or threatened death or serious oneself or ors feelings fear, helplessness, or horror. While PTSD is not limited combat exposure or military, a survey by Wounded Warrior Project reveals extent trauma exposure among our returning service members. When asked about ir combat experiences in War on Terror, survey found that... 83% had a friend who was seriously wounded or killed 78% witnessed an accident resulting in serious or death 77% saw dead or seriously injured civilians, 63% saw se types traumatic events six or more times. The good news is that not every service member this exposure will develop PTSD. The bad news is that long multiple deployments, shorter times between deployments, multiple threat exposures very facrs that characterized service in Iraq (Operation Iraqi Freedom or OIF) Afghanistan (Operation Enduring Freedom or OEF) have contributed PTSD. The numbers service members veterans diagnosed PTSD are constantly changing as more attention resources are directed earlier screening treatment. But re is no getting home free many combat veterans as PTSD does not always have an immediate onset. Some estimate that between 10-30% OEF OIF service members will develop PTSD sympms in a year leaving combat as y transition from military civilian life. I have ten heard veterans comment that, Life was easier in combat. The rules were clear, orders were given, a chain comm was followed. By contrast, dealing a spouse children constantly changing communication, expectations, responsibilities is like negotiating a minefield every day no clear path in sight.
19 The Invisible Wounds PTSD Amputated limbs, disfiguring burns, wheelchairs, prostics, ventilars se are visible evidence severe injuries. It is less visible emotional wounds PTSD that can damage relationships. Anger so consuming intense that it pushes away friends family. Avoidance sights, sounds, or situations that trigger memories flashbacks leading self-isolation. Feeling dead inside finding no joy in life any more. Nightmares, flashbacks, night sweats that turn nights in a siege horror. Insomnia resulting in such physical mental exhaustion that nothing seems possible. Drinking selfmedicating dull pain, calm nerves, fall asleep. Unpredictable mood swings from minor impatience catastrophic melt downs. Verbally or physically assaulting or abusing spouses children. Treating wounds war means treating veteran s mind, spirit, relationships as well as body. Damage family relationships is clear when research compares veterans out chronic PTSD. Veterans chronic PTSD have: More severe relationship problems Poorer family adjustment Higher divorce rates Less self-disclosure emotional expression Greater anxiety related intimacy. PTSD Affects Parenting As Matt Cassi so clearly show in ir sry, everyone in family is affected by PTSD, including children. As children witness a parent s drawal A personal comment made by a wife a wounded warrior really sums it up: Whoever said time heals is full crap. Recent research on returning OIF OEF veterans supports her view. Milliken Auchterlonie s Longitudinal Assessment Mental Health Problems among Active Reserve Component Soldiers Returning from Iraq War published by Journal American Medical Association in 2007 found re was a cumulative burden mental health problems affecting se families. In this study 88,000 who served in Iraq, re was a four-fold increase in interpersonal problems over six months from time first second assessment. mood swings, as y hear arguments shouting, as y no longer bring friends home, PTSD becomes anor entity in home. It s hard a child underst why daddy can t go movies because he s uneasy in a darkened room or why he won t sit down at restaurant or why he never gets up bee noon. The natural questions Why won t he? Why does he? o ten become internalized child believes that, It s my fault My daddy doesn t love me anymore. The world shifted children in family while a parent was deployed, it shifted again a parent s return. The happy friends peer activities. homecoming reunion parent child can go in a downward spiral as effects PTSD or injuries become apparent. Dr. Jennifer Price has identified three patterns in children. She describes overidentified child who mimics feelings behaviors parent PTSD in an eft connect or feel closer. For example, if parent yells a lot, child yells more; if parent complains headaches, so does child. The rescuer child takes on adult roles fill in parent PTSD. This child can be readily identified because he simply acts o grown-up. This is child who now parents parent, manages household, or takes on o much responsibility, ten avoiding The emotionally uninvolved child gets little emotional support from parent PTSD disconnects. This can lead problems at school, depression, anxiety, worries, fears, relationship problems later in life. If see any patterns in r children, it s important reach out support m consider pressional guidance or counseling. Some researchers have characterized impact a parent s PTSD sympms as secondary traumatization child. Getting help is not something only veteran. PTSD is a family affair. 19
20 Clinical Corner TBI PTSD: Navigating Perfect Srm By Marilyn Lash, MSW So ten people talk about effects traumatic brain or consequences post-traumatic stress disorder as separate conditions which y are. But person who is living dual diagnosis TBI PTSD, it can be hard separate m. Just as meteorologists predict perfect srm when unusual unprecedented conditions move in create catastrophic atmospheric events, so can combination PTSD TBI be overpowering destructive all in its path. The person TBI PTSD is living in a state unlike anything previously experienced. For family, home is no longer safe haven but an unfamiliar front unpredictable sometimes frightening currents events. While awareness PTSD has greatly increased recently returning service members veterans, it is not new not limited combat. Anyone children, adolescents, adults, elderly who is exposed a lifethreatening trauma can develop PTSD. Car crashes, shootings, floods, fires, assaults, or kidnapping can happen anyone anywhere. But rate PTSD after brain is much higher in veterans than civilians due ir multiple prolonged exposure combat. According O Connor Drebing, it is estimated that up 35% returning veterans mild brain also have PTSD. What s Unique about PTSD? 20 Sympms PTSD include: Unwanted repeated memories lifethreatening event Flashbacks where event is relived person temporarily loses uch reality Avoidance people, places, sights, or sounds that are reminders Feelings detachment from people, even family, emotional numbness Shame about what happened was done Survivor guilt loss friends or comrades Hypervigilance or constant alertness threats. Individuals PTSD are at increased risk depression, physical injuries, substance abuse, sleep problems, which in turn can affect thoughts actions. These risk facrs also occur brain. PTSD is a mental disorder, but associated stress can cause physical damage. TBI is a neurological disorder caused by trauma brain. It can cause a wide range impairments changes in physical abilities, thinking learning, vision, hearing, smell, taste, social skills, behaviors, communication. The brain is so complex, possible effects a traumatic are extensive different each person. When PTSD TBI coexist, it s ten difficult sort out what s going on. Changes in cognition such as memory concentration, depression, anxiety, insomnia, fatigue are common both diagnoses. One basically feeds reinces or, so it s a complicated mix it s perfect srm. It may help consider compare changes commonly seen TBI PTSD. Memory TBI A period amnesia what went on just bee (retrograde amnesia) or after (anterograde amnesia) occurred is common. The length time (minutes, hours, days, or weeks) amnesia is an indicar severity brain. For example, person may have no memory what happened just bee or after car crash or IED explosion. PTSD In contrast, person PTSD is plagued ten haunted by unwanted continuing intrusive thoughts memories what happened. The memories keep coming at any time day or night in such excruciating detail that person relives trauma over over again. Sleep TBI Sleep disorders are very common after brain. Wher it is trouble falling asleep, staying asleep, or waking early, normal sleep patterns are disrupted, making it hard get resrative rest sleep so badly needed. PTSD The mental state hypervigilance interferes slowing body mind down sleep.