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The Long Haul

Brain Injury Blog by Janet Miller Rife

March 1, 2011

The Long Haul

My son Brian, a 20-year-old college sophomore, sustained a brain injury in a car accident in July of 1985.  Brian decided to go to the beach at 2 a.m. with a friend, after drinking too many beers and smoking marijuana.  In the pre-dawn hours, still miles from Ocean City, he fell asleep at the wheel.  When the Maryland troopers found the overturned car, his friend had only a few scratches, but Brian was taken by helicopter to the shock-trauma center in Baltimore. The harsh agony of those first days, the sights and sounds of the ICU, are forever seared in my memory.

One week later, I contacted the National Head Injury Foundation (now the Brain Injury Association) and received a call from Bill H.  His words to me and my husband Curt became mantras for the journey ahead.  “This is going to be a long haul.”  “Take care of your own needs.”   “Remember you have other children.  We’ve had siblings come to our meetings and say, ‘not only did I lose my brother, I lost my parents too.’ ”  Brian is the second oldest of our five children.  Scott was a senior at Virginia Tech, Sheri a high school senior, Eric in eighth grade, and Danny in fourth grade.

I wrote about everything in my journal and we tape-recorded sessions at the hospitals with doctors, therapists and counselors.  Brian was in three different hospitals for a total of 18 months; he returned home in January of 1987.  My notebook contained despair, hope, confusion, anger, prayers of petition, rages against fate and insurance systems, humorous moments, all of it.  I journaled to help maintain my grip on life and sanity.  I didn’t think I was writing a book.  But a few years later, I realized that my tattered journal held an extraordinary amount of detail.  It became the raw material for my 1994 book, Injured Mind, Shattered Dreams, Brian’s Journey From Severe Head Injury to a New Dream.  The book covers the first eight years of our journey.

In the early 90’s, Brian was doing so well that he was giving talks to high school students about wearing their seatbelts and not drinking and driving.  He was amazing – he saved lives!  We have stacks of testimonials to his effectiveness.  Brian’s achievement was extraordinary, given that doctors gave him very little chance of coming out of a five-month coma in the fall of 1985.  My book ends on high hopes, but in the “long haul” there have been setbacks, more brain surgery, independent living options that fell apart, psychosis.

As several others have noted in their blogs, the reporting about Representative Gabby Giffords’ tragic brain injury has stirred up so many feelings for my husband and me and our family.  When I read recently that her husband decided to go ahead with his career, I was heartened.  Clearly he has begun to understand the long haul and realizes that he must take care of his own needs.  There is no “recovery” from a brain injury, but it takes family and survivor so long to really understand that and adjust.  Because Brian was doing so well in the early 90’s, it was devastating to see his setbacks in the late 90’s.  Now, Brian lives in his own Section 8 subsidized apartment a few miles from us.  We have Medicaid-covered personal assistance for him.  He is unable to be alone because of severely impaired judgment and risks of falling.  But Brian’s attitude has evolved, with the help of the right medications, and for the last seven years this has been a reasonably stable living situation for him.  One of his current assistants has been with him for over four years.  An assistant accompanies Brian to the rec center for exercise three times a week and he attends regular social outings organized by Fairfax County Therapeutic Recreation.  Every other Friday he goes to a social event at a local Presbyterian church.

In the meantime, Brian’s siblings have married and given us 10 grandchildren.  We include Brian in family gatherings, but sometimes it is very difficult for him.  He has hearing and vision loss, and even with his hearing aid, he finds it nearly impossible to follow the activity and conversations when we’re all together.  Many times he has had a breakdown during these gatherings, but here again, Brian’s attitude has gotten better and we’re all grateful.  We’ve learned too how to make accommodations that help him do his best.

When I realized in 2010 that a quarter of a century had passed since that fateful day in 1985, I was amazed at all we’ve survived, all that we’ve learned, all the friends and co-travelers we’ve met on this journey.  I’m pleased to become part of the Lash & Associates family and hope to add to my blog regularly.