Its a scene that none of us ever wants to imagine ourselves living through. Youre sitting in the waiting room of one of Floridas trauma centers because your loved one has suffered a severe Traumatic Brain Injury (TBI). That person will be in surgery for hours, followed almost certainly by days or weeks in a coma. Youre paralyzed with fear, overwhelmed by shock and uncertain of what to do.
In the days that follow you may be one of the many individuals who literally live in the trauma centers waiting room, sleeping in chairs or on the floor at night. Your thoughts will alternate between periods of hope and helplessness while you wait and pray for your loved one to regain consciousness.
One determined woman who did endure this nightmare when her 16-year old son was injured in a car accident emerged with a passion to help other families through the most difficult part of the ordeal. Out of her own experience of anguish and helplessness, Tracy Porter created a unique and compassionate way to help families by founding the nonprofit organization Mothers Against Brain Injury, Inc. (MABI).
Tracy Porter with her son, Justin
While she helped her son Justin through six long months of recovery after his TBI, Porter immersed herself in learning about every aspect of his injury and rehabilitation. During this education she realized that thousands of other families were going through the same ordeal she was, trying to help a loved one whod suffered a TBI. Porter discovered that there are more cases of TBI in Florida every year than Breast Cancer, HIV/Aids, Spinal Cord Injuries and MS combined. “It got so that I couldnt sleep whenever I heard an ambulance siren. All I could think of was what the family was about to go through.” She remembers.
Her answer to the problem turned out to be eminently practical, compassionate and forward thinking. Tracy Porter asked herself what she truly needed during her own first horrific few days camped out in the trauma center waiting room. Her personal list of the most critical, comforting and educational items evolved into the collection of things that her organization now assembles in a large, canvas Tote Bag. Today these beautifully decorated Tote Bags are provided free through a network of 24 Florida Trauma Centers, and given to an immediate family member of any person with a moderate or severe brain injury. A toll-free resource phone number (800-TBI-Hope) is also printed on the bag, linking families to their State Brain Injury Association and people who can provide support. Some of the items in the bag include: a pillow and blanket, toiletry items, snacks, non-clinical information about TBI (both in the acute and rehabilitation stages), information about brain injury resources, medical insurance information, a personal healing journal with 150 prompting questions, a journal to record the patients daily recovery, along with encouraging letters from other families whove been in the same circumstances.
Neuropsychologists have often told Porter that the Tote Bags daily recovery journal can later become a valuable tool to direct treatment decisions because it charts how the patient came out of recovery. She fills all the bags herself because shes afraid something will be missed. That speaks volumes because to date 2800 tote bags have been provided to families in Florida 1300 Totes this year alone. The bags cost $45 to fill, and are funded by public donations, private donors and funding through corporate sources like the Allstate Foundation. Often people whove received Tote Bags donate to the organization out of gratitude for the comfort and resources the bag provided.
With a fundraising goal of $300,000 for 2009 Porter asserts, “If every person who went through a TBI donated $10 the program would be fully funded.” Now because of news coverage shes received for the Tote Bag program, Porter has received inquiries from individuals in South Dakota, Alabama, Tennessee, Ohio, South Carolina and Michigan who want to bring the program to their hospitals. In addition a Tote Bag program now exists at Bellevue Hospital Trauma Center in New York City, largely due to a nurse from a Florida Trauma center who transferred to the New York hospital.
Tracy Porter now heads the program full time, a change from four years ago when she originally ran Mothers Against Brain Injury in addition to keeping a full time job. Part of her job is making hospital visits and providing information by phone. When asked if she feels burned out after four years of dealing with countless people in crisis who are desperate for guidance and comfort her answer is an enthusiast no. “Im doing this work because I have to. The deep satisfaction I get from giving real help to people who are in the midst of what I lived through is tremendously energizing. Its my passion.”
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