Brain injury recovery means little victories, setbacks
By SANDRA BROWN KELLY

On Aug. 7, 2001, Johnny Turner had a headache. The headache was not unusual. Still, he thought he would lie down when he returned home from an errand for his business of setting up and maintaining beverage systems in restaurants.

A home intercom system connected the living quarters to a downstairs office where his wife, Linda, worked on the company books. She’d call him if she had questions.

A few months before, Linda’s job with Bank of America was eliminated as a result of mergers. It was the only job she’d ever had; she’d been in banking 33 years and had risen to a position of vice president. After that, Linda decided to devote her work effort to the family business.

Life was still good for Johnny – J to family and friends – and Linda at ages 56 and 53.

The Turners were coordinators for a Neighborhood Watch program in Roanoke’s Montclair Estates, where they have lived for 25 years. They entertained and ate out and played with their dogs, Duke and Duchess. Mainly, they spent time with each other.

Then, over the intercom that August day almost two years ago, came the sound of J gasping for breath. Instantly, the couple was plunged into a new world fraught with emotional and financial pain.

A blood vessel had burst in Johnny Turner’s head. A stroke followed. His survival was doubtful. Even when survival looked possible, it appeared that future quality of life would be poor.

But Linda was not willing to give up. She emphasized her resolve time and time again in e-mail messages to her mother, Joanne Myers. Joanne began to send the messages to a list of her Internet correspondents who knew J and Linda.

Those people, so inspired by Linda and J’s determination, got other people on the Internet list. Eventually two e-mail prayer groups emerged to provide the support system that has helped bring the Turners to a place they never thought they’d be again.

J survived and has begun to thrive. As of March, he was back home. Linda runs the business with the help of her father, Bill Myers.

Linda has learned how to pull beverage lines as well as keep the books.

Forget all the medicines and tests and scares and infections from feeding tubes, and the dwindling of lifetime savings. J says the worst part of having a brain injury that affects you physically and emotionally, is “not being in charge of anything.”

He credits his being here today to Linda, who J jokes is so organized coworkers call her “Ms. Matrix.”

J has kept his sense of humor and Linda has stuck to her desire for order. She keeps a daily schedule on her Palm Pilot, and each morning when J awakes, she hands him his copy. Repetition is good for a brain injury, Linda says.

Following are excerpts from Linda’s e-mail diary detailing the road to recovery:

Day 205: I had a very tough day with the business. Many of you might wonder why I don’t close the business and go out and get a job that DOES pay. My main reason is medical insurance. Ours is through the business, and I’m afraid if I go somewhere else right now to get it I would never get any for J that would be affordable.

Day 206: They put J on the standing table today and he was standing straighter than I had seen him last time. While he was on the table Jennifer (OT) had him write any sentences he wanted. He wrote: “My right knee cap is in a bind. Meghan’s going to correct the problem. A cushion will probably do it.”

Day 211: After lunch J and I talked a lot about J coming home and how we were both looking forward to it. I went to get the lift to put him down for his nap When I came into the room J was lying on his left side with his left shoulder square on the floor. He said he had hit his head. They took J to the hospital where they x-rayed everything on his left side (the side that he landed on) and his head. They also did a CAT scan of his head. J was given a clean bill of health and back to Avante we went after a mere six hours in ER. What an exhausting day!

J said he had been leaning over to untie his shoe and his feet went out from under him.

He said he felt stupid.

Day 212: We talked about going home and how it bothered me a little after J had tried to get up and fallen. I told him maybe we could get friends, family and neighbors to come by when I had to run errands. J said he didn’t need a baby sitter.

Before he fell I was considering leaving him alone while I ran short errands. Now, I don’t feel that’s a good idea

Betse Kelly sent me a card that had a quote from Maya Angelou: “I can be changed by what happens to me. I refuse to be reduced by it.”

Day 213: My current plan is to bring J home on March 30 if we have not heard anything from the VA by March 15. That will give me two weeks to get everything at the house. Our insurance will pay for some therapy so we can exhaust that before we ask for charity. Maybe by the time the insurance money for therapy runs out, the VA Hospital will have come through. Please continue to pray for us as we wait for the VA decision.

IT’S BEEN 7 MONTHS TODAY: One wonderful thing that happened in the doctor’s office today was J and I had a lot of time to talk while we were waiting and while we were alone in the examination room. It has been very hard for me to have so very little time alone with J in the last 7 months. J and I have always talked a lot but it’s hard to talk about some things when there is always someone with you.

I told J that Mom and I were going to write a book about all this and we wanted his input as to what he was thinking during each part of his progress. “Like how did you feel and what were you thinking when you were in the hospital?” J looked into my eyes and said, “I saw you laying with your head on the gurney, and I thought,‘I won’t be there for you.’ ”

I cried.

Day 215 - MOM’S 71st BIRTHDAY: I picked up our taxes today and, Praise the Lord, we will be getting a refund. I had to get J to sign the returns and he said, “I finally found out what being sick is good for!”

Special message to list members: My current plan is go ahead with plans to bring J home on March 30. We need to get the ramps built and move a lot of things around in the house to make room for J’s bed, wheel chair, etc. I’m planning on a Turner house work day March 23. I could really use some help. I thought we might get started about 9 a.m. We’ll have pizza and Cokes for lunch.

Day 217: When I put J down for his nap I noticed his eyes were red and asked him if he wanted drops in them. He said, “That would be nice if you have them.” He doesn’t blink enough so his eyes get really dry. Anyway, I put drops in his eyes and some ran into one of his ears. He said, “Now I have 20/20 hearing.” Gotta laugh!

Day 218: J had a grand mal seizure and spent the day at Community Hospital. He had a chest x-ray to determine if he aspirated anything into his lungs during this time. He had an EKG, an EEG and a PT scan of his head to determine the damage done. The doctor gave him some Dilantin via IV, and he was taken back to Avante around 5 o’clock.

Day 222: Dad and I went to the Virginia Veterans Care Center. They gave us an electric hospital bed, mattress and an 8’ ramp. We put the ramp on the front sidewalk. It was too tall but it fit perfectly on top of our sidewalk. Dad cut it down so it just needs a couple of things and it should be a perfect fit. We’ll have to get the ramp and five-foot square platform painted on 3/23.

I stopped in to see Wendy Lucas. Wendy owns Lucas Therapies here. I met with her a few weeks ago and she offered to do J’s physical therapy for free after he left Avante.

Please say a prayer of thanks for the Lord bringing Wendy into my life a year and a half ago. This offer of hers will be such a huge help in J’s progress.

March 17, Day 224: The Brain Injury Support Group had a Saint Patrick’s Day party. Mom, Dad, J and I went. J has been wanting to get to one of their meetings but it hasn’t been convenient until now. It was nice for J and my parents to meet some of the people I’ve been fortunate enough to meet. J was pretty quiet. It has to be hard to know what to say when most of your exposure to people in seven months has been those working in hospitals and nursing homes.

I’m more convinced as the days draw closer that it’s important to J’s mental health to get him home.

Days 232-241: The Veterans Administration Hospital is going to accept J, first into the rehabilitation hospital and then, when he’s ready, into outpatient therapy. He will be coming home tomorrow but I don’t know how long it will take for them to get him admitted.

A million thanks to those of you that came to our home on March 23 and worked. It was incredible to see nearly 30 of you.

Once J came home it has taken a lot of work, time, patience, love and prayers to work things out. It has been a MAJOR transition but we’ve made some big progress in eight days. I’ve lived alone for eight months, and now I have to provide 100 percent of J’s care. I love him and want to do everything I can to help him get better, but it is a lot of work.

Mom had done a lot of checking, calling several places to see if we could rent the lift we needed for J. We would have to buy the lift since supply companies did not have a market for continued rental of it. Once again the Lord was watching over us. When I went to Sun Medical to procure all the equipment, I ended up dealing with the owner. We talked quite a bit about what had happened to J.

When the men delivered all the equipment, they told me she had decided to rent us this lift. This has truly been a blessing because it would have cost about $3,500 to buy. This lift enables J to stand, albeit with a great deal of support.

Thursday, we went to the Brain Injury Support Group. This was J’s first meeting and he REALLY wanted to go. I have found these very helpful and hope J will to. They break the group up into Caregivers (me) and Survivors (J) so it gives each of us an opportunity to learn from others and discuss things going on with us with others who’ve been there.

J is adapting very well to home life. He is much happier, sleeping better and less. It is so wonderful to have some time to talk without other people in the room and coming into the room at any moment.

He is not able to sit up very well at all. We do exercises every day, trying to strengthen his right arm and leg. I try to think of things around the house that he can do. He is trying SO HARD.

My days start at 6 a.m., and I’m busy with J or the business until 10 p.m. I get up two to three times each night with J, so I’m not getting all the sleep I need.

Please continue to keep us in your prayers. We have a LONG way to go.

The VA Hospital called and said to have J at the Hospital between 9 and 10 o’clock in the morning to be admitted. They said they would keep him as long as he continues to improve with the therapy.

Day 246: J did his exercises after dinner and did a great job. We talked a lot about this whole situation.

J said, “I don’t want to spend the rest of my life like this.”

I tried to reassure him he’s going to get better and to just look at how far he’s come.

Day 249: We went to the VA Hos-pital. J weighed 189, 4 pounds more than when he left Avante. I guess I was taking care of him too well in the kitchen.

Tomorrow, J should start therapy but it may be Monday because they have to get all the assessments done. The good news is they encourage the patients to spend weekends and holidays with family.

Day 254: Today was a pretty upsetting day for me so I’ve been crying a lot. The change is hard for me too. Mom and Dad came over after dinner and that helped my spirits. What would I do without them? I hope all this doesn’t wear them out before we get J better.

Dr. O is writing a standing order for me to pick J up on Friday afternoon and bring him back on Sunday afternoon. I think this will be good for both of us.

J and I have a daily calendar of love sayings. I wanted to share today’s with you: “Love cures people—both the ones who give it and the ones who receive it.”

Day 255: I found out that our co-pay for J to be in the VA Rehab Hospital is about $15 a day. We were paying $300 per day for the last two months so you can only imagine what a relief this is.

Day 257: We gathered J’s medications and headed home for a weekend visit. It started storming so we hung out a little while. We finally got home and J was exhausted so I put him down for a nap.

I had to work and what a work day it was. I finally got back upstairs at 6 to start dinner. Poor J - he usually has dinner at 4:30. I gave him a banana and some milk to get him by. After I started dinner the dogs started barking. I finally realized I heard a lawnmower. I looked out and saw Karl Vance (one of our neighbors) cutting our grass!

We do have wonderful neighbors!

Day 261: The heads of all the areas (PT, OT, nursing, doctors, etc.) meet to review the care plan for each patient at the VA. It was about 20 people and me. I told them I was concerned that J seemed to have regressed when he got there. Everyone seems to feel this is probably because of all the change J has experienced.

Dr. O said, “You need to know that we are committed to making J as well as we can, but it is going to take months.”

Later, I told J, “I love you so much” and he thanked me.

I said, “You don’t need to thank me for loving you.”

“Yes, I do,” he replied. “I know I’m high maintenance.”

Day 265: We had to get to the Brain Injury Conference at 7:30 a.m. I had to get up at 5 so I could get myself ready and then get J ready.

The first speaker was Claudia Osborne, who wrote “Over My Head.” She’s a physician who suffered a brain injury when she was hit by a car while riding a bicycle. She brought up many points that helped me understand why J does some of the things he does. One of the biggies I got out of her talk is that J doesn’t realize he can’t do the same things he did before.

Today, I was putting down grass seed and lawn fertilizer and he acted like he was going to get out of the wheelchair. When I asked what he was doing he said he was going to rake the yard. Now I know he probably thought he could. There were many other things. I bought her book and had her sign it for J. I will read it with him (he still cannot see to read very well) so we can discuss it and help each other understand what’s going on.

Day 266: We got to the VA in the van, and I told J I was sorry I cried so much but women cry a lot.

He said, “And men are bullheaded.”

Day 277: J decided he wanted to write in his journal. He wrote “Linda OOS.” I asked him what that meant.

He said, “OOS. Out of sync.”

I don’t think J realizes he’s out of sync with things around him. I think what he meant is that we weren’t in sync with each other today. When we have these days we discuss them and I remind J that we didn’t get along every minute of every day before he got sick, so we aren’t going to get along every minute of every day now.

Day 278: I thank the Lord every day for having the VA take J. I’m so pleased with what they are doing for him. I could NEVER have taken care of him for any extended period of time; I know that now.

Day 323: Melissa (J’s case manager with Brain Injury Services) came and we had a little time to talk before Debbie Helms (VA Dept. of the Blind and Visually Impaired) came.

What a ton of good information we gained from this meeting. I had no idea there was so much available.

Debbie is going to refer J to Bruce Wright who specializes in working with stroke patients who suffer from neglect of one side of their fields of vision. She will find a neuro-opthamalogist to give J a low vision exam. The department will provide J with a receiver and headsets for a radio reading service that broadcasts newspaper readings daily.

Debbie also gave me an application for the public library for books on tape. The department will provide the player and headphones. They also offer movies with narration of the action that does not have any conversation.She also told us that Verizon offers a voice activated service or “easy voice” phone. J would be able to speak someone’s name into this device and the phone would dial it. This would be especially useful were J home alone.

July 1, 2002: The VA has decided to send J home because he is not making enough progress with rehabilitation. One of the therapists said last week, “It is not cost effective to keep him here.”

Day 341: Dad and I spent the day together, going to Danville to do a site survey for a customer, to take out some old equipment and put in some new. I don’t know what I would do without Dad and all his help. I thank the Lord every day for Mom and Dad. They have been my rock throughout our recovery.

Day 342: I got up early this morning so looking forward to our day out of the VA, going to get J’s glasses adjusted and to have lunch. Then, the phone rang and Carolyn (RN at VA) said they were taking J to the emergency room. His blood pressure was 90/60 and he said he was clammy.

Sometimes it’s hard to have the faith I need.

I got to the emergency room. J was awake. His voice started shaking. Then he said, “Linda, I’m falling apart.”

I told him it was probably just the medication, and we’d get him taken care of. They did not admit J, but the doctor said he recommends stopping the Lopressor and monitoring J’s blood pressure.

Aug. 7, 1 year out: You will notice I no longer use the days. I will now be using the term “out” that is used in brain injuries.

In the recovery process of brain injury survivors, they say how far “out” they are from their neuro incident. Today, J is one year “out.” Tomorrow, he will be one year and 1 day “out.”

1 year, 32 days out: They were short of staff at the VA so they didn’t get J up in time to go to the church services. We went outside and sat on that same grassy area where we sat yesterday. We had devotions and spent time talking. I hope J enjoys these times as much as I do. It makes life seem like old times.

I talked to J about going to Waynesboro for Fall Foliage Festival, which we have done for many years—before we lived there, while we lived there, and since we left there.

I KNOW I need to do something relaxing before I consider bringing J home. This was especially brought home from the Support Group this week. All these folks talk about is how we need time for ourselves. I know many of you have been telling me this but now that J is doing well I feel like I can actually do it.

J’s tests results came back. His Dilantin level is a little high. His cholesterol is high and his ratios are off. I think his recent regression is probably because of elevated Dilantin. J seems to be very sensitive to Dilantin. Please, Lord, let this be the root of his lethargy.

1 year, 100 days out: We made plans to go to the Adult Day Care at the VA the first week of December. I need to look the place over. I hope I don’t hate it because I feel it’s the best option I have to get J taken care of, at least a few hours a day, after he comes home.

1 year, 122 days out: What a wonderful day this turned out to be! We went for a long walk (J in wheelchair). We ordered a pizza for lunch.

On the way to the VA, I talked to Heather (sister-in-law) about what we are going to eat for Christmas. I remember last year when J wasn’t able to leave Avante for lunch.

J is doing very well. No, he’s not walking. No, he’s not waving at you with his left arm. But, his mind is doing great things. His coming home is still scary for me but not as scary as his not coming home.

Tonight he told me his fingernails were dirty from digging a tunnel to get out of the VA.

1 year, 147 days out: It still bothers me that J feels he’s “useless” so I suggested he make a list of goals. He wrote “goals” but said he was having a hard time getting started. I made a couple of suggestions and he added things of his own.

His final list was: walk, exercise, get driver’s license, get inventory priced (I’ve drilled this in his head because I hate that he left me with the business inventory in such a mess!), dress myself, shower alone, use computer, clean garage, and feed and water dogs.

1 year, 199 days out: When we got inside the house, I showed J everything that had been done since his last visit home. Things really are coming together. We’re less than a week away.

J seems pleased. We went into the family room and J positioned his chair in the spot I had left just for that purpose. J was doing so great today that it was like he had never been sick!

We talked about the things he would like to eat so I could buy groceries before he comes home.

I read him some “fun facts” Sarah (from Music Therapy) sent us. I told him, “Only one person in 2 billion will live to be 116 or older.” Then I said, “What does a 116 year old person want?” J said, “To be 117.”

I told him, “It’s physically impossible for you to lick your elbow.” Then we both tried to lick our elbows. The end of the message said, “Almost everyone who reads this e-mail will try to lick their elbow.” We both laughed.

1 year, 254 days out: When I got the mail there was a letter from the Department of Veterans Affairs informing us that J’s claim for a service-connected disability was declined! I guess I had expected this but I sure didn’t want to hear it.

1 year, 256 days out: EASTER! What a glorious day! I had decided that we would not try to make it to church today, knowing we would have a long day with family at Mom & Dad’s.

1 year, 260 days out: While J had therapy I went to the van and made some calls. I found out J could also file a claim for a service-connected disability for Post Traumatic Stress Disorder. Every time he talks about the plane wreck he was in while in service, he gets very emotional and cries.

(Editor’s note: after his stroke, J’s doctors suggested he had suffered a head injury that might have caused the aneurysm. In fact, J had injured his head repairing a plane while on an assignment overseas in the Air Force. Linda and J have been unable to get those records yet. J’s assignment was for the CIA.)

We got back home about an hour later and there was a stranger cutting our grass. I asked the man, “Why are you cutting our grass?”

He said, “Because we have a good Lord.”

I told him, “I know that, but who are you?” The man said, “I’ve seen you at church a few times and wanted to help.”

Just when I thought the day couldn’t get any better I got a call from a person who told me someone would be coming by to cut our grass the rest of the summer!

I still cry every time I think of this wonderful act of kindness.

1 year, 270 days out: When J lay down for his nap he pulled his left leg up on the bed and across the bed, doing the best he ever has. J sat in “his” chair and I sat in the family room with him. We talked and watched a little TV.

Can it be we are getting back to nearer being “normal”?

1 year, 271 days out: How wonderful to have so many good days in a row.

We had to pick up some parts for a customer. I showed them to J when I got back to the van. He said, “We have one of those elements in the basement.” I assured him we didn’t. He retorted, “Yes we do. It’s for a GE convection oven #CN90.”

Blow me over – he was right!

1 year, 293 days out: J went to Adult Day Care, and I ran errands. When I brought him home for his nap there was a message on our machine from Kristin (J’s Case Manager) saying she needed information for the lending institution carrying our van loan because we had gotten a $5,000 grant from The Jason Foundation!

Oh, I cried and cried.

What a wonderful gift and it may never have happened if Fran Rooker (president of The Jason Foundation) hadn’t come to our house for a TV interview and seen our need.

1 year, 294 days out: J has amazed me since he’s been back from camp. He has actually been stronger since returning from the camp sponsored by the Brain Injury Association. The first time he got in bed he pulled his left leg up on the bed and then over to the left side. Boy, did he grin!

1 year, 295 days out: The only update I have for today is nothing short of a miracle: J took eight steps in therapy, walking the length of the parallel bars! Betty had to brace his left knee so it wouldn’t collapse and then he picked his right foot off the floor and moved it forward. This is absolutely amazing!

1 year, 303 days out: While I was taking care of some wash, J poured water in the dog bowls, gave them a treat and then rearranged dog stuff. It was great that he took this initiative.

I gave J a list of things we needed to pack up for the upcoming business installations. He called things out to me and I put them together on a cart. Of course, we talked about what they were used for and where to buy the things we were short on.

I asked J if it made him feel good to be in the office and doing some work. He said, “You seem to think I should jump up and down and shout because I’m down here. Well, it’s just not going to happen.”

I think his inability to do the actual labor is going to be a tough thing for him to handle for a while. He wants to go with us for the first installation on Tuesday.

1 year, 304 days out: J woke up on his own this morning and I heard him taking his arm brace off. That was a great sign because I usually have to prompt him to do this. He watched TV while I cleaned house, changed sheets, washed clothes. This has become our normal Saturday routine.

J also wrote thank-you notes to the Brain Injury Association (for paying for him to go to camp), FREE, Foundation for Rehabilitation Equipment and Endowment, (for replacing our ramp), and The Jason Foundation (for some of the payment on our van). It took him quite a while, but he did get it done.

At 3:30 I was finished cleaning upstairs, my back was killing me and I told J I was going to sit down for a few minutes before I fixed us something to eat. Well, the flood gates opened. Sometimes I just can’t hold back the tears.

I told J that I was sorry I was crying, but sometimes I wonder when I’m going to have time for everything. I hate it that we can’t spend time together talking, playing Scrabble, or whatever.

J said, “I wish you knew how much I hate not being able to take care of everything.”

1 year, 305 days out: At 3 a.m., J’s light was on. I went into his room to find he had removed his abduction pillow and wanted his foot boot and arm brace off. He was wide-awake and as alert as he could be. I, however, was not. I explained to him it was not morning, and I was not ready to get up and neither was he.

I couldn’t get back to sleep until about 5 a.m. I woke up at 8, but was so tired I decided to sleep until 9. We got up and started our daily routine. J was a little out-of-it. My guess is he didn’t get enough sleep. I ended up having to shave him. I had to remind him of everything to had to do—wash his face, brush his teeth, etc.

Welcome to the world of the brain-injured. One day we’re fine and one day we’re not.

At bedtime, J wheeled himself beside the bed and I assumed he would be using the transfer board. J informed me he was going to use the trapeze to pull himself into the bed. I must have given him a funny look because he started laughing.

I kept saying, “You’re going to do WHAT?”

Well, Mr. Turner reached over, grabbed the trapeze, stood up and pulled himself into the bed. Ok, I was wrong. I love it when I’m wrong because J does something good and, boy, was this a good one!

On June 8, J went with Linda and Bill and workers on an installation job to the new Applebee’s Restaurant in Rocky Mount. He was able to give some instructions on the job. He could read materials.

Though he got tired and spent the afternoon in the car resting, J Turner got back a bit more of his old self.

Comments or questions? E-mail to comments@primeliving.net.