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Rebuilding a life

Posted: February 25, 2011 - 9:48am
Annie and Jon Geselle in July 2010.  Courtesy of Karen Ramsey
Courtesy of Karen Ramsey
Annie and Jon Geselle in July 2010.

One February morning last year, Annie Geselle slipped and fell on a patch of ice out in front of her house. It’s a moment most of us have experienced in this town of steep hills and constant precipitation, but in Annie’s case, the incident could not be brushed off. It lingered and expanded across days, weeks, months, derailing her life in ways she struggled to understand. It would be spring before she realized she’d sustained a brain injury that morning; a year later she’s still trying to fathom the changes.

Some changes have been devastating: An inability to make the simplest of decisions; a painful sensitivity to noise, light and movement; a confused sense of her body’s orientation in space; and the financial and emotional impact of losing her job as director of the Canvas.

But there have also been unexpected pleasures: more time laughing with her sons, Ezra and Matisse, and husband Jon; a liberating focus on the here and now; and a heightened awareness of her life’s many blessings, including the community members who have overwhelmed her family with their generosity and care.

Through this period of tremendous upheaval, losses and gains, Annie has kept her radiantly positive spirit and keen mind. The energy that created the Canvas Community Art Studio and Gallery continues to shine forth when she talks about the things she wants to do once she gets better. As she prepared to go to Boulder, Colo. for a three-month intensive therapy at the Mapleton Center for Rehabilitation, Annie and her husband Jon reflected on the year’s challenges, their gratitude toward the community, and on their hopes for her recovery.

A confusing beginning

The ice on Juneau’s streets the morning of Feb. 23, 2010, was not the gleaming menace we’ve all been avoiding this past week. In fact, it was invisible, hidden beneath a wet sheen of rain.

“There was no snow, no ice at that time, but a lot of people tell me they remember that day because everyone was just sliding everywhere,” Annie recalls.

“I stepped on the curb and slipped in this very strange twist, and my head hit the curb and I slid under a parked car a little bit too.”

No one saw her fall, so it’s unclear if she lost consciousness, but soon after falling Annie was back on her feet, feeling very shaken but visibly unharmed.

She continued her walk to work, being careful to walk in the street where there was less chance of more ice, and arrived in time to teach her morning tai chi class. She then attempted to navigate the routine chaos of her job as executive director of the Canvas, the community art studio and REACH day habilitation center she established in 2007.

“I’m feeling really funny, out of sorts and shaken. Then it was noon and I was going to do a marimba class with the staff and we started playing and the sound just brought me to my knees. I just doubled over. Something was really wrong.”

She went home and lay down. She was out cold for hours, oblivious to her coworkers’ repeated calls to check on her.

From that point forward, time became unhinged from its usual constraints. Weeks passed in a kind of confused haze.

“I don’t even know how all the time went by,” she said.

“Every once in awhile, I used to have these moments of ‘Wait, I used to have a job or something, people might be wondering where I am.’”

Repeated attempts to go back to work were unsuccessful, so she lay low — a huge switch for the woman who’d dedicated herself to making the Canvas a thriving resource for community members and REACH clients alike.

An MRI she had two weeks after the accident was normal, and Annie kept telling herself she was fine, and just needed to rest. But as winter turned into spring, Annie and those around her began to realize more than rest was needed, and that something more serious might have happened to her that morning.

A broken filter

One of the early indications that she had sustained a traumatic brain injury came in the form of a heightened sensitivity to noise and light. The once-normal levels of noise in her lively household were now intolerable, and her sons, ages 5 and 11, were unbearably loud to her ears. For a while she took to wearing earplugs in the house. She also kept the shades drawn and lights off.

“It was so painful. My head hurt all the time. If Matisse even said, ‘Hey mom,” (I’d say) ‘Stop yelling!’ I was a mess. It was awful to be around me.”

She also has trouble filtering out background noise from things up close, resulting in a muddied mess of sound.

“It’s like my filter is broken. So I don’t hear the kids as being in the background, I hear them right here, with us. It’s a lot of work to concentrate on the conversation.”

Another physical effect of the brain injury was a shift in her proprioception, or awareness of her body in space. This is not the same as balance (her balance is actually fine) but has to do with spatial orientation, an awareness of her limbs in relation to other objects and the space around them.

“I’m not dizzy. I can’t explain it. I don’t feel like I’m going to fall over. But I don’t feel the difference between my hand and the couch. It’s just one thing. There’s no difference. Laying in bed I always notice it. I can’t feel between the bed and me. If I didn’t move, I wouldn’t exist. It’s a strange thing.”

She also has trouble following a sequence, anything from time to a recipe.

“Time, I don’t experience in a connected linear way. Right now is right now. It’s not before or after something else. All the last year is just free floating.”

Her awareness of what is going on is often limited to what is right in front of her. She didn’t brush her teeth for weeks after her toothbrush got moved from its usual place by the sink — it just never occurred to her.

“In the summer I just stood by the window watching my kids play because if I didn’t, I would forget they were there and that I should be watching them. “

Though capable of carrying on a conversation, Annie said she is routinely blocked in her intended course of thought and must work hard to stay focused on what she is doing or saying.

“I’ll get stopped midsentence and everything is blank. I can’t get going again. And then I think, ‘What am I doing? Who am I?’ Everything goes away. Then it gradually comes back.”

Getting help

Though dramatic in many ways, Annie’s injuries were difficult for her to understand at first, and she remained confident that she was getting better and would soon be back to work. In the months following the fall she was under the care of her primary physician, but she did not get referred to a neurologist until May.

That neurologist, Susan Hunter-Joerns, began to help Annie figure out what had happened to her.

Annie had suffered a coup-contrecoup injury, in which the brain is damaged at point of impact and at the point directly across the brain from the impact. This is caused when the force of the blow or momentum of the moving head causes the brain to strike the skull on the other side. This type of injury can also involve diffuse injuries not specifically linked to a physical area of the brain.

In Annie’s case, when she hit the back of her head, much of the damage from the fall occurred to her frontal lobe under her forehead, the seat of executive functioning and decision making.

It was not suprising that her MRI did not show the extent of the damage, Hunter-Joerns said.

“It’s like a photo — it doesn’t tell you what they are thinking.”

Many people sustain blows to the head but do not suffer a traumatic brain injury, she said. Most get better. With Annie, it took awhile before the extent of the damage was realized.

“It was not at all obvious what the problem really was,” Hunter-Joerns said. “It was very confusing, partly because she herself thought she was going to be fine.”

Hunter-Joerns stressed that every brain injury is different, and must be treated on a case-by-case basis. The area of the brain affected by the injury is important, as is the developmental stage of the person affected.

“The ability of the brain to change and recover is different for different people and is generally, on average, worse with every decade of age.”

The brain does find ways around its roadblocks, but it is difficult to predict with much accuracy how much the person will improve and in what ways. Many patients benefit from the triple team of speech therapist, occupational therapist and physical therapist, but in other cases the therapy can be too intense and taxing for the patient to benefit from.

“It’s kind of like teaching kids, it’s just trying to get through to the them the best way you can.”

Annie’s approach to her recovery was helped enormously by the triple team approach, three Bartlett Hospital therapists she began seeing in the fall. One of them, a friend who works as a speech therapist at Bartlett, had heard of Annie’s injury and stopped by her house to find out more. Hearing her story, she suggested Annie be evaluated at Bartlett, which she did. After working with her, each of the therapists recommended she attend a more intensive recovery center, where she could make great strides in a short amount of time. This was the impetus for her trip to Colorado, where she is currently attending appointments.

Financial crisis

Through the months of confusion and false starts, another issue had been building to a point of crisis: the Geselle family’s financial situation. Annie had been the breadwinner, pulling in a good salary with her job at the Canvas while Jon, who runs his own business as a life coach, was home with the kids.

“I was the main wage earner, and I was all structured around that. I do that, its all consuming,” Annie said. “You’re on this path and suddenly the train is derailed.”

Once she realized she wouldn’t be heading back to work right away, Annie applied for disability from REACH's long-term disability insurance provider, but was denied.

“They said ‘You’re fine, you can sit and your job is sedentary so you’re fine.’ My job involves a little more than sitting — a lot more than sitting. I don’t think I ever sat at my desk for more than two seconds.”

Jon and Annie have appealed that decision and are currently waiting to hear the new verdict. REACH itself, a nonprofit based in Juneau, has been fully supportive of Annie's disability claim, and has pushed the insurance carrier to approve her appeal. Annie's position at REACH was held open for her, with the hope that she'd be able to return to it, until just a few weeks ago.

In the meantime, Jon has taken a job with the state, in the Department of Health and Social Services, easing the situation a bit, though he makes only half of what Annie did. The family has been getting some of their groceries through Helping Hands and the Southeast Alaska Foodbank, both of which have been “amazing resources.”

Annie and Jon said they have made it this far due to the enormous generosity of the community. They would have lost their house this fall, Annie said, were it not for the fundraiser MK MacNaughton organized at the Canvas in June. And they routinely receive anonymous donations of cash in their mailbox; once there was a bag of potatoes left on the doorstep. Both said they have been awed by this generosity — not just from friends but strangers.

“I’m more on the giving end, I prefer that,” Annie said laughing. “But it’s so touching. It’s so heartwarming, I can’t even describe the feeling. It’s an amazing thing. You just think, ‘Wow, I’m going to do this too, when I can.’”

Great strides

Annie has made a lot of progress since last spring, but doesn’t try to downplay the difficulties she and her family have experienced.

“I think we’ve taken big strides but we’ve had really bad days, really hard days, and I still do. “

Her husband and kids recently left her alone for a day, and she said she was shocked to discover how out of it she felt without Jon’s constant verbal and physical cues to help her figure things out.

Annie said she’s gone through periods of confusion, frustration and sadness at her situation, but has not really felt angry.

“Someone once said to me, ‘Oh you must think, ‘why me,’ and I thought, ‘I never once thought that.’ It could happen to anyone, so why not me? Better me than someone who would say ‘why me?’”

“I know a lot of people do have problems with depression and suicide, luckily that has not been my experience. I was just more confused, ‘How did this happen? What does this mean now?’ and then just decided all it means is, this is what I‘m doing now. That’s the only thing I could go back to, the present moment. “

The therapists have helped her see what she’s accomplished and how hard she’s been working.

“(They said) ‘You are working incredibly hard just to get through a day. And I almost cried when I heard that because I thought, ‘I sound fine, I look fine, people just don’t have any idea just how much work this is.’”

When she feels completely frustrated or sad, meditation is often the only way to get through it.

“Meditation has been really helpful. There’s nothing you can do with those feelings. You just have to be with them. And then they actually kind of go away faster. You just sit there and you’re like, ‘I’m just going to be really sad about this, because I’m really sad about this.’ And just let that go, and then you move on to the next thing.”

Annie, who attended a Buddhist college with Jon, is an avid tai chi student, and has been continuing this practice since her accident, an activity her therapists say is enormously helpful. She also benefits from her background in disabilities, which helps her approach her limitations from a more objective standpoint, helps her brainstorm for solutions, and gives her many contacts in the field.

Some bright moments

One part of the experience Annie said she wouldn’t change for anything is the time she’s spent with her children.

“Matisse and I, for months we just colored. And I hadn’t really been home since he was born. The Canvas happened a week after he was born, I started that project. So it’s been a gift to be home with him and to be available for Ezra.”

Her husband agreed.

“We’re much closer, and its forced us to slow down and spend time together,” he said.

“And they think I’m funnier now for some reason,” Annie said.

“Well, you are,” Jon said. “You have a better sense of humor.”

Annie continues to learn new strategies for dealing with her limitations. Her problems with proprioception have vastly improved.

“What we did find early on that when Jon squeezed me really hard in a hug, my headache just evaporated. So I would have him lay on me with his whole body and it just would be like, ‘Ah. Now I know where I am!’”

Wearing a wet suit, something her physical therapist suggest, has a similar effect.

“You may have seen me walking around in it. It’s great for Juneau weather. I think everyone should wear one,” she said laughing. “You can sit on a bench, or on the ground, or in the snow.”

The pressure of the fabric against her skin gives feedback to her brain about where her body is. Annie said since she started wearing it, she’s been sleeping 8 hours instead of 14; her exhausted brain gets a break from trying to orient her all the time.

She also wears a compression suit, which is slightly less effective than the wet suit, but not as conspicuous.

Her tolerance to noise and light has improved on its own, but has also been helped by “simple tricks” such as reminding herself something is in the background and can be ignored.

She’s also been given a iPhone and an iPad from SAIL, both of which help her navigate and focus on daily tasks, like taking her medicine.

“This one beeps me all the time — take your medicine, or the food is burning.”

And with the iPad she can Skype with her kids every day she’s gone.

Headed to Boulder

Annie is currently in intensive therapy at the Mapleton Center for Rehabilitation in Boulder, Colo. Though nervous about leaving her kids for three months, she is comforted by the knowledge that close friend Betsy Sims, will be watching the kids during the day while she’s gone. And she’ll be staying with her tai chi teacher while she’s there, an ideal situation.

Jon said they try not to have many expectations for the coming months.

“At this point we don’t know ... what’s not going to improve and what is. There’s the improvement and recovery, and the there’s adaptation the strategies for working around things.”

Annie said her recovery has felt like a second childhood in many ways. She hopes to get to the point where she can learn to ride a bike.

“First I was an infant over-stimulated by everything and then I’d just conk out and go to sleep. I went through every stage. We figure I’ll be hitting puberty while I’m in Boulder, so that’s a good thing.”

•••

A blog has been set up for those who want to follow Annie’s experiences in Boulder at http://web.me.com/anniegeselle. A food account has also been established for the family at Rainbow Foods, and a bank account at Wells Fargo (ask for the Annie Geselle Rehabilitation Fund).

RESOURCES


Alaska Brain Injury Network
The Alaska Brain Injury Network, an advisory board of the Department of Health and Social Services, can help Alaskans figure out how to get the services they need and how to pay for them. Visit their site at www.alaskabraininjury.net/
Here are some facts about brain injuries in Alaska.
* The incidence rate of traumatic brain injuries in Alaska is the highest in the country, 28 percent higher than the national rate. In rural areas, the rate is more than twice the statewide rate.
* An estimated 11,900 Alaskans are living with disability due to a TBI
* it is estimated that 20 to 30 percent of service members returning to Alaska from Iraq and Afghanistan will need TBI services.
* The three leading causes of traumatic brain injury in Alaska are car/truck crashes (27.7 percent), falls (23.6 percent) and assault (12.5 percent).
Off-road motor vehicle crashes account for 9.7 percent of the hospitalized brain-injured Alaskans.
Source: Alaska Brain Injury Network, Alaska Trauma Registry and the Alaska Bureau of Vital Statistics.

TBI Support Group
Margie Thomson runs a local brain injury support group, held the first Wednesday of every month from 3:30-5 p.m. at the Juneau Job Center in the Glacier view room.
Thomson, who works as a disabilities support services coordinator at UAS, started the group about 10 years ago after attending a forum on traumatic brain injury. She discovered there was a group of locals who could benefit from sharing stories and resources, but that there was no central source for information on a local level.
“I realized a lot of folks that return to our community after they’ve had an accident or whatever, there’s no path, no set place for them to go. They have to figure out on their own, who are the speech therapists who are the occupational therapists. I like to help them pull resources together and share things.”
The Alaska Brain Injury Network is a great resource for the group, she said, sharing materials and sometimes sending speakers down to talk to the group.
A core group of about five meets once a month, with other members filtering in and out. Thomson said she generally lets the group set their own agenda and that for her, it’s been a true pleasure to get involved.
“It’s probably one of the best hour and halfs of the month for me, and has been for many years. Everyone is very honest and open and real. They’re kind of my heros in many ways”

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