Defining Moment Ties That Bind Finding inspiration in a former patient. By Ben Gilbert, PT, MS, MBA | April 2017 Listen to 'Defining Moment' On March 17, 1986, I had 2 grand mal seizures. The first occurred during a basketball game in my high school gym. The other happened while I was on my way home from the hospital with my family. In time, doctors diagnosed an arteriovenous malformation in the left parietal area of my brain. Two separate embolization procedures killed about 65% of the mass. The decision, then, became what to do about the remaining 35%. The options were to perform brain surgery and remove it, or for me to take medication for the rest of my life and risk a hemorrhage. With my parents at my side, we decided I would have a craniotomy to excise the remaining malformation tissue. It didn't seem a big deal at the time. In fact, the day I was admitted for the procedure, I raced my parents the 2 miles to the hospital. They took the bus while I jogged. I won easily. When I woke up in the recovery room, I was groggy and confused. I could not move my right arm or leg, and my whole head felt numb under the heavy dressing. Although nurses intermittently came to check on me, I felt alone and helpless. I didn't immediately realize that I could not talk either. Not a sound. It turned out I had expressive aphasia and a right hemiparesis as a result of the surgery. I was 16 and a high school sophomore, so my life immediately was turned upside down and forever altered. At that age, my entire identity revolved around my friends and the sports I played—basketball and baseball—so my physical impairments forced me to change my priorities quickly. My speech slowly returned over the next few months, and I gradually regained movement and strength in my right side. On and off over the next several years, I had a lot of physical therapy, occupational therapy, and speech-language pathology. I always will be grateful for the discipline, hard work, and guidance of my therapists as I traveled the long road to recovery. But my high school years were not easy. Because I no longer was on sports teams, I lost friends. Former teammates came to see me in the hospital and later at home. They looked uncomfortable but tried to motivate me to get back on the court. I loved them for their efforts, but they didn't understand. I couldn't just return to the court or the field, even though I looked to them as if I could. Both basketball and baseball take a great deal of coordination and motor control. In basketball you must, for example, be able to dribble the ball, follow through on an outside shot, jump, and pivot quickly. I could walk again, and I looked "normal," but that didn't mean I could return to my old life and activities. I continued to receive physical therapy in college because of some lingering spasticity and asymmetries with respect to strength, coordination, and balance. As I was coming to terms with my physical capabilities, I looked at my physical therapists (PTs) and started to consider the field as a career choice. It struck me that it was gratifying work, helping people get better. It wasn't a boring desk job—no 2 days were exactly the same. The job market for PTs was good, and the profession offered growth opportunities. So, I went to PT school, graduated, and began working. I enjoyed getting to know patients and their families personally. I especially liked figuring out the root causes of my patients' impairments and working side-by-side with them to arrive at lasting solutions. From the start, I tended to prefer the "messier" cases—the most challenging ones. There are no easy fixes or shortcuts when it comes to lasting, complete rehabilitation from such injuries. I myself was an example. So was "Ronnie." I first met her when she was 16 years old. She had been referred to me for treatment of "shoulder instability and weakness." That seemed straightforward. As I prepared to conduct my evaluation, I expected to find a deconditioned, low-tone teenager with poor postural awareness. I anticipated that she'd like nothing more than to be with her friends and that she'd have little patience answering questions from yet another medical professional. Ronnie presented very differently, however. She was bright, sweet, articulate, and extremely knowledgeable about her condition. Her past medical history included hypermobile Ehlers-Danlos syndrome with recurrent shoulder subluxations, failed past shoulder surgeries and nerve blocks with resultant complex regional pain syndrome, and consistent pain at 8 on a scale of 10. She was being homeschooled due to her condition. Her parents were doting and appreciative. Initial therapy had been unsuccessful at reducing Ronnie's pain and subluxations for more than a few minutes at a time. Ronnie had to go to the emergency department occasionally to have the subluxed glenohumeral joint reduced under anesthesia. She had a nonfunctional right arm, wrist, and hand. Moving proximally, I found during manual therapy sessions that cervical traction produced "floaters" and dizziness in Ronnie, and that she had abdominal distension. My further questioning revealed that she had bowel movements only once every 2 to 3 weeks. At the time, no medical professional had been aware of the dizziness and bowel difficulties, she told me. As time passed and we continued working together, I felt as if I was peeling off the layers of a lifetime of impairments. In subsequent months she was diagnosed with postural orthostatic tachycardia syndrome, and she had intermittent transient ischemic attacks (TIAs) that affected her memory, swallowing, and cognition. Throughout these ordeals, however, Ronnie remained motivated, optimistic, and compliant with all the exercises and guidelines we set for her. I wish I could say that physical therapy "fixed" Ronnie. She's still dealing with upper limb spasticity, dysphagia, and some mild cognitive deficits after having cervical fusion and mild TIAs. But she's now a college graduate. She's employed and has found ways to live with her impairments. She still keeps in touch with me from time to time, letting me know how she's doing. Ronnie continues to inspire me. Her story defines, in a very real way, why I do what I do as a PT. Her positive attitude, motivation, and knowledge of her own condition have helped her overcome huge obstacles. Physical therapy has helped her manage her many impairments and has provided a path to wellness that has reduced her disability and pain. In many ways she reminds me of the sidelined high school kid I used to be and the full participant in society I am today. I feel a bond with her that will last a lifetime.