Our story began about eight years ago when Martie’s left arm hit Joe on the head at 2:30 am. In 43 years of marriage that had never happened before. As we found out a few hours later, Martie had had a seizure caused by a brain tumor, a meningioma. In addition, the tumor was pressing on her motor cortex, resulting in left-side paralysis.
The meningioma was classified as “atypical” meaning that it was fast growing and aggressive. It had invaded her skill and blocked a major vain that drains blood from the brain. Neurosurgery, at Cape Cod Hospital, removed all but a small part of the tumor. It took a special kind of intense radiation to melt it. The 27 radiation treatments were done in Boston, a two hour drive from our home. We had to stay with friends and our son during those weeks.
After two weeks of rehab, Martie began to regain her balance and her ability to walk. Joe became the caregiver. With no experience or training, he made the hundreds of phone calls keeping friends informed. He planned and made the meals. He drove whenever they went out.
About six months after the radiation, following a relatively quiet period, Martie began having a cluster of seizures and the paralysis returned. Those events happened over the Christmas weekend during which none of her specialist doctors were on call. The day after Christmas we transferred her care to a Boston hospital with the help of a social worker there. The doctors adjusted her medication and tests showed no recurrence of the tumor. But this second paralysis left her less mobile and resulted in additional cognitive deficits. She no longer could sew, play the piano, or cook a complete dinner. She also had to give up her practice as a psychotherapist.
Our relationship changed. We both had had professional vocations that we shared with each other. We are each proud of both our own careers and each other’s. It deepened our relationship. That sharing was no longer possible. In addition, we both were very independent, never asking for help. Martie was dependent on Joe, could not work, and felt that she could not compete with him. Joe had to learn how to be a helper and to ask for help from others, not an easy transition for him.
Eight years later, we are still adjusting to the continuing deficits from the tumor. In the meantime, we decided to write a book about all these events and about how our relationship had changed. The purpose of the book was to speak to those with traumatic brain events (injuries, tumors, strokes, etc.,) and their caregivers about how those events might affect their relationship with those close to them. The book is now published: “Relationship Rewired: how a couple survived the effects of a brain tumor.” We hope that our story will provide both information and hope to its readers.