Traumatic Brain Injury, The Silent Epidemic—and the Silent Impact on Family Life
© September 2000 and February 2004, Mary Anne Lessley, with Sonja Lessley

Note: This article first appeared on www.womenofwonder.com, October 2000
in the spirit of Brain Injury Awareness Month

This story is shared in the spirit of October as Brain Injury Awareness Month. It is the collective perspective of a mom (Mary Anne) and sister (Sonja) of a 27-year old brain injury survivor. Though painful to write this story, it is our deepest wish that all of us become more educated to the reality that brain injury IS such a silent epidemic. Even among family members, we're often unfamiliar with the symptoms, don't know how to help, where to get help, or that we should and can get support. Sonja and my husband and I feel strongly that if people were aware of the symptoms—realizing that every brain injury survivor is affected in a unique way—people would be more compassionate toward those with whom we cross paths and who appear very normal but are discounted as really weird, strange, or are too slow in responding, learning, or getting it.

This is about our thoughtful, kind, intelligent son and brother David, who was medically diagnosed at age 19 as having suffered a mild brain injury at the age of 12, in 1984. At this writing, he is probably living homeless in his 1985 shelled pickup truck in a coastal college community. He works part time in a telemarketing firm, the second this year of probably 35 or more entry-level jobs since 1993, to support his passion for playing guitar and drums, to pay for his license plates, and to make monthly payments on a credit card account that he maxed out several years ago. David uses the monthly allowance which my husband and I provide to pay for food and other expenses, including a postal box and storage space for music equipment. We remind him to have his truck serviced, with expenses incurred added to our credit card. We provide him voice pager service, and he can call home on our toll-free number.

This summer, I watched proudly to see him receive his Home Health Care Assistant certificate, awarded through the Adult Learning Center at a California community college. He indicates he is "going to look into" getting a job in that field. His Doberman currently lives with us so David could concentrate on completing a Certified Nursing Assistant program at a community college earlier this year; he was subsequently dismissed. He previously spent about a year in a Traumatic Brain Injury (TBI) program until expelled. Initially, he flunked out of community college after two years of passing the difficult classes and flunking the easy, always overestimating the number of units he could complete in a semester. And he refused to request special services available to him with his brain injury diagnosis. Under pressure from us, David applied for social security assistance, was denied help, and refuses to reapply directly or through an intermediary because that experience was so demeaning.

As background, this sensitive, caring child was also extremely introspective for his first eleven years. Even then he talked about a career in environmental law. He won Outstanding Newspaper Carrier before he could compete for college scholarships. He often read three chapters of biology in an evening, to Ace a test the next day. He enjoyed cooking meals, our family project the year I finished college, and he had a flair for clothing fashion.

David enjoyed lots of male and female friendships and a normal relationship with his 14-months-younger sister, from scrappy to best friend. By 7th grade, he was proficient in Spanish, and he and Sonja would converse fluently on our frequent excursions to Tijuana from our home in San Diego. Our family relationship was relatively pleasant, sometimes challenging, with David engaging us, his teachers, and anyone else who would listen, in conversations and debates ranging from the absurd to the intellectual.

On our family vacations, David snow skied with Sonja from the age of five, mostly benched his way through a season of Little League, counted leaves on trees during soccer games. It was much less stressful when my husband and I decided to take turns carpooling him daily to the beach so he could perfect his surfing skills to enter competitions. He out-hiked his Indian Guide friends; loved to fish, and ride his motorcycle; drove my husband to distraction with his skateboard designs; and dragged me to stores so he could buy parts to build sleek "machines." One time, David and I sat in the alleyway of a sleezy bar when I feared a scam in process with David's hard earned money—where we waited for the surfboard designer to complete David's custom board. He mountain biked with elegance, always wearing his helmet. But it was during a karate lesson with a professional that he suffered the first of a series of silent injuries, being dropped head first onto a mat: no apparent injury. On another occasion he hinted that he had fallen from his motorcycle on a weekend trip with friends. We were satisfied with his accounting—and he was wearing a helmet; in retrospect, probably the second silent injury.

During a hot fall day of after-school socializing, David was catapulted off the knees of a friend onto wet grass. He suffered a concussion that caused severe short-term memory loss. We both spent the night in the hospital; by morning his memory functioning normalized. He was infuriated by his pediatrician's asking him if he were on drugs—the pupils of his eyes were dilated; then I was asked to leave the room so she could drill him in depth about possible abuse. Satisfied with David's answers, we were free to leave. The third silent injury.

Our family somehow survived the horrendous 8th- and 9th-grade years during which David and his dad argued over math, science and Latin assignments. He appeared to have difficulty making and keeping friends. We endured his sudden outbursts of temper. He suffered another slight concussion, playing touch football with older children. The fourth silent injury. And we all were concerned and frightened by a series of nightmares that David experienced over a period of at least a year. During each episode, he would appear to awaken, and with muscles tensed in extreme strength, moan in terror while vividly describing monsters that were chasing him.

Doctors dismissed the possibility that the nightmares could be related to any of his injuries, and implied I was a doting mother. His dad wrote those years off to his son's being a teenager. Sonja, confused by both her brother's and parents' behavior, felt that something was seriously wrong, yet continued to feel close to her brother. She felt shut out and ignored by her parents. I felt totally unsupported in my conviction that something was seriously wrong, and escaped by absorbing myself in developing my new business. The family unit was deteriorating.

Then, as a sophomore in an elitist high school in our new home in Colorado, problems intensified. David was barely passing the Spanish at which he had excelled; he argued with his science teacher; he verbally abused his sister—in the car on their way to school, in front of her classmates and friends at school. He obsessed about everything—from when the first snow would fall to the television being too loud. Temper outbursts intensified.

Sonja reflects upon those years, "Subconsciously it seemed that I had to get seriously sick, to awaken the family to the fact that something was very wrong with our family. Like our bodies in which one organ invaded by a disease cannot be restored back to health without treating the body as a whole, and with a complete altering of one's lifestyle, true also with our family. My eating disorder and depression shocked our family into getting the medical and counseling help we all needed to bring our family life to a state of homeostasis, completely altering the way our family functioned. We were all victims of my brother's silent epidemic—our family had deteriorated simultaneously with the intellectual, physiological, and behavioral deterioration of David's falling victim to the silent epidemic."

During the years of family healing, David's problems escalated. Having his eyes examined by an ophthalmologist resulted in a simple pair of reading glasses as he continued to blink his eyes incessantly. He exhausted the list of psychologists who purportedly specialized in brain injury, provided through our health insurance. One remarked, "David, are you on drugs? Your pupils are always dilated." (Dilation is a common phenomena with certain brain injuries.) He developed a hatred toward these professionals, and blamed his parents for screwing up his life. A master tutor working with David called to ask whether David had suffered a brain injury. Finally, the beginning of support! She provided a wonderful referral who could have begun a reversal of David's challenges if given the opportunity.

Near the end of his senior year, it appeared he would not graduate. In desperation I called David's teachers. Only one had a thought about David's failing grades: "David is such a nice person, he tries so hard, and has interesting ideas. Is it possible that he suffered a head injury?" Another moment of support! This teacher extended deadlines so that I could help David, and I insisted I be supported in my process of assisting David. It was a painful three weeks for everyone, and especially difficult for David and me as I sat on his bed night after night, sometimes through the night, to prompt him in finishing his term papers and studying for finals. It must have been almost unbearable for David because his brain was so tired under such stress, and I was ignorant to the fact that he had no brain energy "reserve" and needed frequent rests.

If David had been a normal rebellious child, I would have let him flunk to suffer the consequences. I was convinced, however, that if he didn't graduate with his class, he would never graduate. Based on behavior that followed, he would not have graduated. So I will always be grateful that I followed my heart: David graduated! His diploma has been invaluable in enduring the difficult times that continue to today.

For David, he loves his dog (that had been abused by the previous owner) more than life itself. Yet he didn't know how to care for this animal. He asks about her and follows with "I'm glad she has a good home." Ironically, I can't send pictures of this now sleek dog to him because we are "abusing" her because I put a collar on her, even though this dog in his care fell off a cliff, was banged by an out-of-control wheelchair, hit by a car, and often had to scrounge for leftover food at the beach.

For our family, we haven't heard from David for over a month, even though he said he was coming home to help us move to another city. My husband visited him this summer, and David showed him the nature he loves so much. Sonja thinks about him every day, wonders where he is, and hopes he is okay. I visited him twice this year, learning so many wonderful things about him as we ventured into nature and explored a Swedish deli in a California mountain community. I watched him surf so gracefully, accepted his invite to coffee with him to hear a friend play guitar, and was introduced to more of his pleasant college-enrolled friends, some who seem to accept and care for him, yet most ultimately distancing themselves from him.

I leave him messages, and there is always a gnawing in my stomach after such a long period of no communication—afraid to persist in calling him, yet fearful for his safety. My husband has spent years finding excellent resources and professionals for David. David and I had dinner with one of those wonderful persons who has a great record for getting SSI benefits for people like David; he declined to be helped. I'm a member of the state Brain Injury Association (BIA) and attend conferences to learn the latest traumatic brain injury research. Through my organizing business, I occasionally work with brain injured survivors challenged by executive dysfunction. When I'm settled in our home, I will become more active with the state BIA and a local chapter.

In reality, it is outside our family's jurisdiction to submit David to any kind of assistance unless he were to be arrested or committed to a rehabilitation program, because "he is an adult." Hopefully, David will continue to make positive changes in his life, no matter how small. And when he decides to get help to connect his free flowing intelligence with some practical skills, we or someone else will be there to help him... this kind, caring person who continues to converse with new-found friends in Spanish, always starting a band, always planning to become involved in preserving the nature he loves and about which he knows so much.. our child and brother who insisted on reading the medical diagnosis that stated that "Mr. Lessley is employable," but also that "he will do best in routine jobs that require no attention to fine details or require him to learn new information on a regular basis" ... our David who fell asleep during one of the medical tests, with the diagnostician not understanding his need for frequent rest periods, and stated that his overall performance raised questions about the validity of the clinical scale profile. For David, a perfect formula for a self-fulfilling prophecy.

An update in 2004: David continued working as a telemarketer after receiving his Home Health Care certification in 2000; arrived home 2 days late for Christmas—we waited for him to arrive to celebrate together. With some subtle coaching, he succeeded in finding a good Home Health Care job to stay for 4 months in our home while he worked. Holding true to past behavior patterns, he accepted way too many hours at work (sometimes 60 hours a week), became extremely exhausted, and increasingly made more and more unacceptable behavior decisions. As he grew more tired, he slept less and less, creating some extremely stressful times in our home with his temper outbursts, incessant interrupting as I tried to carve out time to work in my business office, putting duct tape over all the clocks in the house. Suddenly, he left his job, packed his outer-space art and sky-light modified truck, and drove back to California. With only a truck to call "home," he quickly gave up efforts to find another home health care job.

In January 2003, my husband and I delivered a customized van to him in California, complete with bed, lots of storage shelving, and groceries. Upon arrival, we discovered that he had modified his truck to two stories, with a plexiglass, second-level roof so he could look at the stars at night as he wondered off to sleep. We also had to deliver the news that his dog had died suddenly earlier in the month. Months later, he called home to lecture me that his dog would not have died had she been cared for properly—this dog whom I had brought back from the doorway of death to spend three much-deserved "privileged" years. We talked through the situation; he finally accepted that nothing could have been done for her, and I asked him to remember her fondly as he looked through the memory book I had created for him.

Today—several companies later—David continues to telemarket, periodically being terminated for inappropriate outbursts, and certainly experiencing the downturn of that industry with the new telemarketing laws. As he went through a period of "no work," I sent gift cards for him to buy groceries, and gas for his car; paid his cell phone bill in order to maintain our only means of communication—whenever he decides to call.

Never does the worry completely cease as David generally calls only when life gets really tough, and generally won't return our calls. The car owner/mechanic whom we found to service David's car called the other day to get the credit card number. "David brought his van in for an oil change and to check the reason for some noises—13,000 miles since his last maintenance appointment. I lectured him (David) that he just has to clear some of his possessions from the van. But He looks good and was in good spirits." And this man is so kind to David, always watching for his best interests.

For me, I hate that David hasn't called in three weeks. I hate knowing that he will seldom return a phone call. I hate that he generally makes phone calls only after he has obsessed about an "issue," from my supposed treating his dog badly to my sending him to a counselor 15 years ago. And most of all, I hate the cruelty that this silent epidemic continues to inflict on the life of our son and brother. I finally have grieved for that son we no longer have, and I accept the challenges. I continue to learn so much from other brain injured survivors and gain so much support from them as I co-lead our local support group of wonderful individuals. And our family will always miss the child and brother and friend we once knew and no longer have.

Mary Anne Lessley is an organizing services specialist, often working with survivors of traumatic brain injury, and she is co-leader of the Longmont CO Brain Injury Support Group. Sonja Lessley recently completed a Master of Fine Arts degree at Tufts University, in conjunction with the School of Museum of Fine Arts, Boston, and is starting a pet portraits-with-a-twist business.