Advocacy

BY ELIZABETH COOLIDGE-STOLZ, MD

healing doesn't bring back the past. it does something better~ it opens a future.

My parents' memory was that I never wanted to become anything other than a doctor. I wanted to understand the human body, learn what was wrong, fix it, and help people.

That plan seemed remarkable on track up to my 25th birthday. I sped through an elite college in three years and then our state medical school, becoming the first graduate to land a residency in internal medicine at a prestigious Boston teaching hospital. The next step was to move to specialty training in cancer care.

PERSPECTIVE ON THE PAST: The author with husband Jeff at their anniversary luncheon; "I began working with the groups I knew best, those associated with brain injury and epilepsy, and polished my thoughts on patient advocacy, communication and education skills that could help patients and healthcare providers learn from each other, talk to each other, and form more effective, functional relationships that left all parties in better shape at the end of the day – and led to better outcomes for people and their families."

Life brought something different. One day after a long night on call, I was the tour guide for my husband and his best friend, who was visiting Boston for the first time. At one point, we turned a corner where street crews had jackhammered up the paving. A car sped by close to us, kicked up one of those blocks of paving with rock embedded underneath, and sent it into the back of my head.

The young doctor died that day, and a young woman with poor memory and a terrible headache was sent home to a dimly lit apartment to sit and wait because brain injuries heal in their own time. I did not know anything and I could not fix anything. When we went to appointments, doctors talked to my husband, over my head, as if they were vets and I were a pet.

Yet, I began to learn differently. I listened to other patients in waiting rooms and outside testing areas. Gradually, I hesitantly began to give suggestions, that they might get more attention from their doctor if they brought a copy of the article they had read, rather than opening a conversation with "I read that…" Similarly, recording seizures, headaches, or side effects on a monthly calendar and bringing it to an appointment rather than saying "It is getting worse and worse. I can't take it anymore" might be a more effective start to a discussion about symptoms and how to interpret and manage them.

I, on the other hand, was passive for five years, going to the same mediocre general neurologist and listening to him say the same thing about the clusters of headaches that remained as other symptoms lessened, that head injuries heal in their own time. It was only when he finally said I should talk to my gynecologist because my headaches were most frequent before periods, that I got angry, and with anger, honest. I said I didn't know what they were, but I knew they didn't represent premenstrual syndrome, we were not getting anywhere any more, and I wanted a second opinion.

The consulting neurologist, who had expertise with head injuries, diagnosed my post-traumatic epilepsy based on history alone. Both of us realized the first neurologist had never done a brain-wave test, which turned out to be abnormal, and diagnosis led to treatment and a return to life outside my apartment.

I began working with the groups I knew best, those associated with brain injury and epilepsy, and polished my thoughts on patient advocacy, communication and education skills that could help patients and healthcare providers learn from each other, talk to each other, and form more effective, functional relationships that left all parties in better shape at the end of the day – and led to better outcomes for people and their families.

Sadly, my first public speaking engagements all led with the story of my accident and the tagline that I was not a smart patient. But if the listeners learned from my mistakes, they could become smart patients, effective learners and communicators who could become lifetime advocates for themselves and mentors for their children and friends.

My husband and I entered what we thought would be the second chapter of our lives, with both of us working. I became involved in medical publishing as a content editor and volunteering as an educator and facilitator for advocacy efforts between specialists and patients.

i developed workshop plans on self-advocacy and thoughts on advocacy for other adults, such as parents (which included the reminder, if you are NOT the decision-marker, remember it is not your body, not your decision, and not yours to live with the consequences, so remember to back off and know your place as adviser and helper only). I also developed workshop plans for parents of children with complex medical needs (involve them from the beginning to the extent they are able to understand what is happening, through the time they can, and should begin to play a role in decisionmaking. And if the day comes, they can and should independently make their own decisions, bite your lip, cry in private, and let them go with the pride that a mother bird must feel when her offspring flies successfully for the first time away from her).

What I did not know as I visited Disney World for what I thought would be my great personal accomplishment (being the opening speaker at the Epilepsy Foundation's annual conference on issues affecting girls and women) was that my challenge and growth as person and advocate had just entered a new and complicated phase: our son, then a toddler, was nonverbal and showing other developmental difficulties. At the same time, I was developing new dis abilities myself, and unsure how or whether to raise them with a neurologist.

My son, Joseph, had arrived early, after a seemingly healthy pregnancy that had ended prematurely with eclampsia, an emergency Cesarean section, and hemorrhage. I was hospitalized for nearly a week and they allowed Joseph to stay because I was ill, but he had cleared the neonatal ICU in 24 hours.

Indeed, because Joseph was there for so long in modern terms and seemed so healthy, we were asked if he could be a model newborn for a physician who needed to learn how to do a neonatal assessment as part of his specialty training. Of course we agreed. I watched the senior physician observe the younger man do the assessment and his facial expression never varied, but he paused before he decided how to tell me what the two found. In hindsight, I should have worried more about the pause. He said Joseph largely scored just as a newborn should, but he seemed to become agitated very easily and to self-soothe very poorly. I was told, gently, this was something my husband and I should watch when we were able to take him home.

And we had, but we were two youngest children raising a first (and eventually only) child, away from our parents, and in a neighborhood with few other young children.

Joseph hit his major developmental milestones on time. He never walked; he was running at 11 months. However, he didn't point at things, seemed an inward little guy, and he didn't start to talk. I asked the pediatrician about this when my boy reached 12 months. The pediatrician told me that first children, especially boys, start when they are ready.

When Joseph was 18 months, I insisted on him getting a hearing test, which turned out to be normal (ok, of course, it was, he could hum any tune perfectly.)

It was only when Joseph was a little older than two years old, and I put him into a home-based day care for the first time (with a wonderful, experienced kind woman) that the shadows began to take shape and the dream of "boys do things in their own time" began to die, just like "head injuries heal in their own time." My son had been in her home for two weeks when she sat me down gently when I came to pick him up. She hoped I could accept her honesty. Joseph was very bright, she said, picking up the routines of the house quickly. However, he made no effort to communicate with the other peers there, either by language, hand signals, or eye-to-eye communication. Indeed, she said, there had been problems during playtime with chase games. The games would begin with fun, but Joseph was unable to read the other children's cues when they were tired or wanted to quit, and his caregiver would have to intervene. Furthermore, she added, if he could speak, he would already be speaking. But it wasn't that way. For example, she only knew when Joseph wanted more to drink at lunch because he threw the empty cup at her.

As I began to apologize for his behavior, she took my arm and stopped me. She redirected me to explaining the nature of Early Intervention, the state-based services available for children under the age of 3 years, explained she had cared for some of the children of staff in the local unit, and she had already contacted them. Despite the fact we lived in the adjacent area, they were willing to come to her home to evaluate my son.

And thus began the journey that proceeded to a home visit, more jargon, including "lack of symbolic play" (that I didn't understand) physicians and more physicians, tests and more tests, and then the diagnosis of pervasive developmental delay, followed over time by major mood disorder (bipolar disorder by the time he was 10), seizures, and now, at age 23, a list longer than I have fingers to count.

The neonatal nurse who told me sagely, when Joseph was less than 48 hours old that he would be sunny and stubborn, was right. He is sunny and stubborn. His luminous smile is missing a tooth from a fall, and we long ago gave up on wanting fine sutures in his face from falls or other injuries and instead gave thanks to whomever invented skin glue. But Joseph is our son, the child so unmistakably mine one could never think we brought someone else's baby home.

As we moved through Joseph's life in chapters, from physician to collective specialists, from early intervention to special education, from day programs to a residential school, to adult services and a group home, we learned much.

I learned much, with gratitude to the families who walked those paths before me, sharing tales I wouldn't have believed about proofing homes so aggressive children with no sense could not find a kitchen knife and hurt someone (in reality, while pretending it was a light saber, and then melting down when told to put it away). Because of Joseph, I became aware of an entirely new area of need for advocacy for people with disabilities, ranging from intellectual and developmental disabilities, to people with acquired disability like my brain injury, or stroke, or dementia, or mental illness. I became aware that people with a disability affecting communication, cognition, mood, or behavior are twice as likely to be hurt or killed in an incident with law enforcement as an able person of the  same demographic background.

Our collective experience both creates the need for more voices and creates more voices. I am thankful for the opportunity to be one of the voices that may help us all move forward, whether we are in the position of helping others needing help, or doing both at the same time.•

LIKE FATHER: Joseph and his father, dressed identically, at his school conclusion ceremony in June 2017.

ABOUT THE AUTHOR: Elizabeth Coolidge-Stolz, MD received her BA from Bryn Mawr College and her MD degree from the Pennsylvania State University College of Medicine. Four months into her internship at a Harvard-affiliated teaching hospital, an accident with traumatic brain injury ended the crafted life plan and led to the path not planned—chronic injury, and then finding the voice of a patient advocate. When her son arrived, with sunny temper, autism, bipolar disorder, epilepsy, and other medical challenges, this led to the author's growth as a disability advocate and a believer that few people maintain good health throughout life, but everyone can find wellness, the balance of ability and disability (or limitation) that allows us to open ourselves to unexpected possibility. On Facebook @healingwoman