Brain Injury: A Journey

My Journey with Jen

I was living in Fairfax, Virginia. I had two more courses to take to get my MFA degree in creative writing from George Mason University. I had gone to one month of classes when I got the phone call that changed our lives forever.

February 5, 1986. A car accident. Middle daughter, Jen, age 20: closed head injury; comatose for five months. Youngest daughter, age 18: crushed pelvis; six weeks in traction, pelvis healed slightly off-center.

Almost four months after the accident I found out that Mt. Vernon Hospital had an agreement with Fairfax Hospital to take two patients into their rehab program who couldn’t pay. I was divorced. My ex-husband’s insurance company wouldn’t pay anything. Jen was transferred from Fairfax, Virginia to Alexandria, Virginia. She was still in a coma; that is, she couldn’t move anything voluntarily on her body; only her eyes were tracking. They were very alert, but we didn’t yet know what was going on cognitively because she couldn’t respond in any way.

A month of intense therapy at Mt. Vernon and still no progress. They were about to send her to a nursing home when she voluntarily moved a finger. The first miracle. Then, within weeks she was making what the doctors called “astounding” progress. Astounding from a medical standpoint. Inch by Inch Jen, they called her.

She could move her pointer finger and spell words into sentences on an alphabet board. Her brain was still sharp! It would take eleven months of intense speech therapy, which included relearning how to swallow, before she could talk. But physically she had the worst case of spasticity the doctors had seen in a brain injured victim. A twisted brain stem left her unable to walk. Right arm is fused at a forty-degree angle at the elbow; the wrist is fused downward. In the photographs it looks like her left arm and hand are also drawn in and down, but this is the arm and hand that are now very mobile. The amazing thing is that she was left-handed before the accident. We consider this another miracle. This, and the fact that Mt. Vernon’s rehab center had only been in operation for ten years when they took Jen in. A time before HMOs. A time when Medicaid paid her bill, for a year and a half. Then Mt. Vernon wrote off the balance. If ever I could, I would be their most willing donor!

These pictures were before digital cameras. Amazing the technology in the past twenty-four years. There are more pictures somewhere. I know Stephanie has a picture of her beloved crushed car that Jen was driving that night when she went to pick up her sister from work. If I find more pictures, I’ll post them.

Comatose Jen. A month, maybe two months after the accident. I’m showing her something from her life before the accident and talking out loud to her, trying to stimulate her brain. The nurse has positioned her this way in the bed. She can’t move.

This is after she began moving her body voluntarily (she moved a pointer finger on July 4, 1986), but she still couldn’t talk. She looks like she should be able to, she’s so alert and bright-eyed in this picture. Other times her head drooped to her chest, especially after physical therapy when she was exhausted. It was an uphill climb. They casted her arms and her legs several times, trying to straighten her limbs to release the spasticity. But they took the casts off and the limbs contracted. Finally they cut the tendons, “snipping” them the way you would snip a tight seam. Then they did a kind of caudal block to try to relax the muscles. Both procedures helped, but only the right leg and left arm were the limbs that she ultimately would be able to control.

She couldn’t talk for eleven months–she said her first words, “I love you, Mom,” a week before Christmas of 1986. She had come an amazingly long way! And this is me, same size physically as I am now–4 feet 11 inches, 86 pounds–but I have brown hair here, no gray. I’m smiling too because this IS a happy day because Jen’s smiling.

Jen’s sisters visited her in the hospital. Her youngest sister is holding Jen’s communication board (this would be soon after Jen moved her finger), and Jen’s holding the stuffed animal her sisters gave her (she’s still getting stuffed animals from friends and family!).

Smiling Jen. It was over a year after the accident before she could smile this sweetly, her personality restored. But she had and still has short-term memory problems; and there’s a part of her personality that’s childlike/imaginative. She has a low tolerance for pain. To a “normal” person, her pain would be discomfort, but to her it’s “serious pain,” as she says. Pain that can often spin her into an agitation fit, though she’s learned more and more through the years to control this.

This was sometime after January of 1987. She didn’t come home from the hospital until October 1987. By then she could feed herself, though she would never be able to fix her own food. Every time I went to Mt. Vernon (an hour and a half round trip) I planned to get there at dinnertime so I could feed her; it was what the staff wanted me to do. (BTW, Jen grimaces at this picture. SHE DOESN’T LIKE YELLOW!!!!)

AFTER THE HOSPITAL . . .

Jen was coming home. I needed two more months so I could finish the two graduate courses I had dropped at the time of the accident. But Medicaid wouldn’t pay beyond the end of October. But they paid for eighteen months. I couldn’t really complain. (Today she would probably have been released when she was still comatose. We feel incredibly blessed that the accident happened then and not now!)

My seventeen year old son would become an aide too, helping me take care of Jen on weekends while I did the library work I needed to do to finish the courses. I also had remarried. This second husband would help too, especially when it came to keeping our cars and Jen’s wheelchair repaired.

A week before her release I went to the hospital each day to learn how to transfer her, from wheelchair to car, from wheelchair to hospital bed. The social worker at the hospital was incredible, lining everything up for us: a hospital bed and a motorized wheelchair that two different organizations paid for, and a tub seat for the bathroom of the new house we had just rented. We had to move out of the townhouse. Sad, especially because financially it had been a blessing. But it had no full bathroom or bedroom downstairs, and the cape cod did. Our two years in it were probably the best years of our lives.

Back in the world for Jen. For over a year Aid Van picked her up each morning and drove her to B.R.I.D.G.E., acronym for Brain Injury Daytime Group Extended. Then she went once a week as a volunteer at the hospital, entering data into their computers with her good left hand.

Here are a few pictures of Back in the World, from 1997 to 2004 during which time my hair went from dark brown to gray-white. Jen got older, too. But she still has her smile and her wit. She is easy to take care of. She can weight bear, which I consider a gift from God. If she were paralyzed I wouldn’t be able to take care of her.

This is Jen in her volunteer “bib,” home from her day at Mt. Vernon Hospital.

Jen loves her birthdays, especially the gifts. She figures she should have two birthday parties a year: one to celebrate her biological birth; the other to celebrate her “second” life–waking up from the coma!! Sometimes she gets the two, sometimes even more than two. Her family and friends spoil her. I tell her she deserves to be spoiled.

A friend of our family carries Jen down the steps at her older sister’s house.

Jen loves Christmas, too. The gifts!!

Summer of 2004. Still hanging in there. This was taken at a friend’s house in St. George, a spot in the southern Utah desert where we lived from 2000 to 2005.

I call this picture “What to Do.” My son and I are trying to get Jen stabilized in the backyard of my oldest daughter’s house. We’re probably just getting her back in her chair from a standing position, and she’s in stiff mode, both legs reacting to some sort of stress. This is a very recent picture, about three years ago as I can tell from the wheelchair she’s in, my older body, my almost-white hair.

And finally, two last photos, for now. Jen on a summer day at her sister’s house in Virginia country. And Jen in her standing box that has kept her legs from totally atrophying, with her two friends who put it together for her. All of our friends during this time in our lives were great.