THE RE-EDUCATION OF BEN:
My son, Ben suffered a cerebral hemorrhage at the age of twenty- three. He had just lost his best friend two weeks before, another police officer who died in the line of duty. He was driving home and the bleed occurred in the basal ganglia of his brain and his Jeep hit a tree. Thankfully he was alone and no other car was involved. He was life- starred to a trauma one hospital. That night began a long, challenging journey for Ben and his family. He had suffered a traumatic brain injury and nearly lost his life. We were told by the doctors to prepare our family and Ben’s sisters for the worse. Ben did not die. He spent three weeks in a coma and seven weeks in intensive care. We as his family became his caretaker and his advocate seemingly overnight.
Ben lost all speech, cognition and the ability to move his body. He was transferred to a rehab hospital where he spent another four and half months. His recovery was painstakingly slow. One step forward, three back. I come from a large family and we had witnessed our father, through hospice die at home. He had a beautiful death. Peaceful, prayerful and surrounded by love. A year before Ben’s injury my mother died. Also at home and also surrounded by love. I am the mother of four children and have taught preschoolers for thirty- three years. I was instrumental in my mom’s care for six years as she suffered from dementia. I believe we are born with skills to develop during our lifetime. I was born to be a caretaker. Now I was faced with helping my son on his road to recovery. I called it the “Re- education of Ben”. My husband and daughters were critical in his journey to become whole again. We all took turns being with Ben at the rehab center. He was only alone to sleep. The ride to the center was three hours, round trip, but we did it every day for the time he was there.
We started to see improvements as his brain was rebooting. On Mother’s Day he whispered “Mom”! I used all my preschool training to awaken his five senses. I placed two signs by his bed. One said: “The journey of a thousand miles begins with one step.” The other said: “Hope is a muscle and it has to be worked.” We worked that muscle over and over. Finally, Ben returned home to us. It has been seventeen years since his injury. He speaks (mild aphasia). He walks (with the help of a cane and a leg brace). He reads (slowly). He writes (he does not have use of his right arm/ hand). But he volunteers every day for different schools/ organizations. He drives with an adapted car. He lives with us yet is independent. He shops, does his own laundry, pays his bills and socializes.
Caregiving for an injury like this really never stops. I say it is the injury that never fully heals, but the message I want to tell you is the message that is written on our blackboard since the day Ben came home. Never give up. Keep fighting. Look for the good in people of all abilities for we all have something to share and learn from one another. I am now registered to become an end-of-life-doula with the University of Vermont. I feel called to help people who are dying and assist along with hospice and the palliative care professionals any person that might be in need of my training. I want to assist people in that part of life in whatever way I am called to help.
With trauma, what happens to one person may be felt by those around them, too. Especially in closely knit circles, in essence, the trauma happens to everyone. Dare to lean in and actively share the experience, since on some level it is already shared. Imagine how powerful all this love is for the patient, and no doubt vice versa. Harder lives can certainly lead to “better” lives, and this is how. Close family and friends help us face our fears, reflect our sorrows and joys and help us feel alive again by the strength of the connection. They help us see ourselves again after a trauma, which can otherwise make ourselves unrecognizable. Many of us don’t have family, or we have family with whom we are not close or who would not dare to show up. Caregivers come in all sorts of shapes and sizes. Friends can become family. Health aides, nurses, the full retinue of professional caregivers, all can become “family.” Strangers. Neighbors. Roommates in a nursing home. Non-human companions too can become family. Especially when we are vulnerable, care, love, connection, all can come from surprising angles.
Hope is a powerful force, even in the face of unknowns, illness, and death. There is power of owning strength and the language we use to express it. “Hope” can forever be recast. One never need lose hope; it only requires being nimble with what you hope for. Giving up and dying are not synonymous. Use words; don’t let the words use you.
The author has seen death and near-death alike. She has seen what hospice can do when death must come and has seen rehabilitation work when death could wait. With such rich experiences, she has come to see the myriad ways beauty can show up. And/or, beauty showed up because she brought it. Either way, note how much power she has found by leaning into pain. That’s not always possible, but when it is, it’s easy to highly recommend.
-BJ Miller, MD
Death doulas represent a rapidly growing field, with more training programs popping up across the country. It is not nearly as standardized or regulated as traditional clinical specialties, but that means the barriers to becoming a doula are less and the freedom for doulas to perform a wide range of activities is greater.
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