This chapter on life with a brain injury is excerpted from Garry Prowe's book, Successfully Surviving a Brain Injury: A Family Guidebook.
In 1997, Garry's wife, Jessica, sustained a severe brain injury in an automobile crash. "At the time, I spent way too much time accumulating the information I needed, not only to understand the medical aspects of Jessica's brain injury, but also to handle the myriad insurance, financial, legal, personal, and family issues that accompany a serious blow to the brain. I recognized the need — that stil exists today — for a book that comprehensively addresses the wide variety of issues families face in the first few months after a brain injury.
"To research this book, I assembled a panel of more than 300 survivors, caregivers, and medical professionals who resonded to my email questions and reviewed portions of my writing.
"For us, this project is a labor of love. All profits fromt he sale of this book will be donated to brain injury organizations."
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The brain oversees everything we do:
- How we move our body (physical)
- How we perceive, recall, and process information (cognitive)
- How we communicate with others (communication)
- How we feel (emotional)
- How we behave (behavioral)
- How we interact with others (social)
It’s easy to see how a serious blow to the brain can have a devastating impact on the survivor and those around her.
As different parts of the brain control different functions, the impairments acquired by a survivor depend on the precise location and gravity of her injury. Since every injury is unique in the damage it causes, every survivor acquires a unique mix of complaints.
It’s impossible for a doctor to review your patient’s CT scans and MRIs and predict the deficits she will acquire. Certain functions, however, such as memory, language, and information processing, are lodged in multiple areas of the brain and are almost always affected by any serious injury.
Later in this section, I list the more common impairments of a serious brain injury, divided into the six categories described above. As you review these lists, remember, no one survivor will experience all of these complaints.
There is a powerful cause and effect relationship among the impairments produced by a brain injury. Some can be called primary; others can be called secondary.
Primary impairments are those directly related to brain damage. These include most of the complaints in the physical and cognitive categories. Secondary impairments are those that develop as a consequence of one or more primary impairments. Communication and social complaints mostly are secondary impairments. Emotional and behavioral complaints generally occur as both primary and secondary impairments.
This can be confusing. So, let’s consider five examples:
- Mary was a marathon runner; she now walks with a distinct shuffle (primary physical). This humiliates her (secondary emotional). So she rarely leaves her house (secondary behavioral and social).
- Susan was training to be a doctor. Her injury dashed her dream (primary cognitive). She is now depressed (secondary emotional) and not much fun to be around (secondary social).
- Changes in the chemistry of Beth’s brain cause her to be jittery (primary emotional). Medication helps, but the drugs cloud her already foggy thinking (secondary cognitive). She gulps Mylanta to quell her anxiety-driven heartburn (secondary physical).
- Nancy was an auctioneer. She now has a problem expressing herself (primary physical and cognitive, and secondary communication). She lost her job and is worried about paying the rent (secondary emotional). Her anxiety causes her to unconsciously tense her muscles, aggravating the pain in her spastic arm (secondary physical).
- Martha’s major complaints are disinhibition (primary behavioral) and impaired short-term memory (primary cognitive). She’s the life of the party. But, she lost her job as a waitress because she spent too much time flirting with the customers (secondary social) and mixed up her orders too often (secondary communication).
It is important to understand that secondary impairments can be just as debilitating as primary impairments.
Warning: Some caregivers tell me they preferred not to know what the ultimate outcome might be for their survivor. Others, like me, wanted to know all the possibilities right away: the worst case, the best case, and everything in between. If you’d rather not speculate about the future, that’s okay. Just jump to the next section.
Physical complaints are the easiest to detect and the quickest to be treated. There’s no hiding that somebody walks with a shuffle or has little coordination in her left extremities. While many physical deficits are permanent, others can be remedied or moderated with physical therapy and other types of treatment, such as exercise, surgery, and prescription medication, taken orally or injected into troublesome areas.
The one physical complaint every survivor experiences is fatigue, particularly during the early days of recovery and rehabilitation. The healing brain devours energy. The patient’s remaining get-up-and-go is gone quickly. The injured brain must work double-, triple-, or even quadruple-time to perform even simple tasks. In rehab, Jessica sometimes slept sixteen or more hours a day. Even today, she frequently needs eleven or twelve hours of sleep to re-energize herself.
Some of the other typical physical complaints caused by a brain injury are:
- Partial paralysis
- Chronic pain
- Disturbed sleep
- Poor endurance
- Speech difficulties
- Swallowing difficulties
- Changes in appetite
- Muscle weakness
- Altered sexual response
- Changes in appearance
Also, it’s not uncommon for survivors to find one or more of their senses — sight, hearing, touch, taste, and smell — altered by their injury.
Finally, many folks living with brain injury are clumsy due to impaired muscle coordination, balance, and motor control.
Cognitive complaints, almost always, are the most disabling of the six types of impairments caused by a brain injury. They are most profound immediately after the injury when the survivor has very limited awareness.
During rehabilitation, cognitive abilities typically improve dramatically, but rarely fully. All but a handful of survivors of serious brain injuries experience major cognitive deficits.
In the past, it was believed that, after two years, people living with a brain injury made little or no progress in cognitive ability. New research, however, has demonstrated that recovery can, with effort, be a lifelong exercise.
Cognitive impairments — by themselves or in combination — cause many problems in daily life. Take reading, for example. One person has difficulty reading because her injury damaged the language centers of her brain. She can’t comprehend the meaning of many words. A second person struggles to read since her injury compromised her short-term memory. She can’t follow the flow of a story. A third cancelled her library card because her injury ravaged her ability to concentrate. She started a book twenty times and never got past the first page.
Neuropsychological testing is a tool rehabilitation therapists use to isolate the cognitive impairments — such as language, memory, and/or concentration — that cause a particular functional problem, such as difficulty reading.
Unlike physical complaints, which are easily diagnosed, cognitive impairments can be subtle. This is especially true with a package of higher-level cognitive abilities called executive functioning. We use our executive functioning abilities to do everything from making an egg salad sandwich to launching a spacecraft.
The survivor and those around her often don’t recognize major deficits in this area until she returns home and reenters the community.
Memory almost always is impaired by a brain injury. Four types of memory can be affected, singly or in combination:
- Short-term: the ability to hold a small amount of information for about twenty seconds
- Long-term: the ability to hold and retrieve information for as little as a few days and as long as a few decades
- Retrograde: the ability to recall events that occurred prior to the injury
- Anterograde: the ability to recall events that occurred after the injury
The most debilitating cognitive complaint is a lack of awareness of one’s deficits. Without this realization, the survivor sees no reason to work hard to recover her cognitive abilities and, thereby, remains seriously impaired. She may become belligerent as she is unable to understand why her life has become so difficult.
Other common cognitive complaints include deficits in the following areas:
- Spatial orientation
- Language comprehension
- Safety awareness
- Information processing
- Learning new material
You may find that your survivor dresses in the morning before showering or is overwhelmed at the idea of preparing a simple lunch of soup and a sandwich.
Her executive functioning abilities have been disturbed by her brain injury. These are the primary components of executive-functioning:
Two common, but usually temporary, cognitive complaints are confabulation and perseveration. Confabulation, also known as false memory, is the confusion of imagination and memory. The patient, struggling to explain the gaps in her memory and her bewilderment and fear as she emerges from her coma, creates a, sometimes, bizarre fantasy. She doesn’t grasp that she has been injured and is in a hospital. Some survivors actually believe they are being held prisoner and are the subjects of strange experiments or sadistic behaviors.
Perseveration is the persistent repetition of a response — a word, a phrase, or a gesture, when the stimulus that triggered the response has disappeared. For example, the patient may respond to a question and then repeat the answer over and over, even well after the person who posed the question has left the room.
Physical and cognitive complaints routinely impair a survivor’s ability to communicate. The physical impediments include:
- Illegible handwriting
- Painfully slow handwriting
- Slurred speech
- Speaking too slowly or too quickly
- Speaking too loudly or too softly
- Impaired hearing and/or sight
- Impaired verbal fluency
The cognitive impediments to communication include:
- Inability to understand words
- Reading impairment
- Difficulty finding words
- Difficulty expressing ideas
- Verbal disinhibition
- Difficulty getting to the point
- Poor listening attention
Emotional complaints arise either directly from the injury to the brain or indirectly as a reaction to one or more primary impairments. For example, one survivor is depressed due to damage to the part of the brain that governs emotions. A second survivor is depressed because she has trouble expressing herself and has lost nearly all her friends.
Often, when a patient slowly regains consciousness, she is in a pleasant mood as her view of the world clears. Later, when she begins to recognize the extent of her impairments, she becomes vulnerable to a wide range of debilitating emotions. These emotions can be treated — with full or partial effectiveness — through individual or group therapy, peer counseling, help from a support group, and/or medication.
The more common emotional complaints caused by a brain injury are:
- Mood swings
- Post-traumatic stress
- Psychosomatic pain
- Self-esteem loss
As with emotional complaints, behavioral problems result from a combination of direct and indirect causes. Damage to the area of the brain that houses self-control and social awareness can rob the survivor of the filter that keeps her behavior consistent with socially accepted norms.
One survivor may throw a temper tantrum at the grocery store because she can’t find those last two items on her shopping list, and she is too tired to monitor her own behavior. Another survivor may act up in a movie theater because she can’t follow the plot of the film and doesn’t recognize that her fidgeting and complaining is annoying people sitting nearby.
Behavioral complaints, which can interfere with rehabilitation, range from simply annoying to the threat of bodily harm to the survivor and/or the people around her.
The more common behavioral complaints caused by a brain injury are:
- Alcohol abuse
- Crying excessively
- Physical aggression
- Sexual inappropriateness
- Sexual promiscuity
- Verbal aggression
Sometimes, behavioral problems don't develop until the survivor returns home and expects her life to return to normal. They also can undermind a survivor's transition back into the community.
Behavioral problems can be tricky to treat and require considerable patience and understanding from others. Extreme behavioral impairments require highly structred treatment by professionals in an inpatient setting.
Probably the most common social complaint arising from a brain injury is loneliness. It’s easy to imagine how a mix of physical, cognitive, communication, emotional, and behavioral problems can scare away old friends and frustrate finding new ones. This is particularly true among the largest group of survivors, young men just entering adulthood. Their buddies are quick to move on when their pal can’t keep up with them. Many survivors rely heavily on their families to satisfy their social needs.
Brain injury also is cruel to romantic relationships, especially newer ones. “You’re not the same person I fell in love with,” is heard frequently by people with a brain injury. Some survivors become self-centered and unable to recognize and respond to the needs of their partners. Some partners are unwilling to adjust to the transformation in their survivors.
In a culture influenced heavily by the beauty and witty repartee of television and film stars, many people discount the possibility of becoming friends with someone who has multiple impairments. This unfortunate bias limits a survivor’s chances to meet new people, especially those looking for romance.
Despite these obstacles, however, plenty of survivors on the panel remain happily married. Others have discovered love and marriage after their brain injury.
These are the primary complaints that create social barriers for survivors:
- Visible physical impairments which make some people uncomfortable
- Fatigue that limits social activities
- Difficulty finding words in conversation
- Difficulty interpreting customary social cues
- Unemployment, which reduces social opportunities
- An inability to drive or use public transportation, which keeps survivors at home
- Emotional problems, such as anger, apathy, denial, depression, egocentricity, and paranoia
- Behavioral problems, such as aggression, complaining, destructiveness, immaturity, selfishness, and withdrawal
Spasticity is a condition of abnormally increased muscle tone or the shortening and/or tightening of soft tissue muscles, tendons, and ligaments. A common symptom of serious brain injuries, spasticity is caused by damage to a particular part of the brain or tears in the bundles of nerves around the brainstem that control movement and sensation.
To appreciate what a spastic muscle feels like, concentrate on one of your muscles. Tense this muscle as if it's being worked to its limit. Then, try to imagine how you would go about your daily activities with this muscle permanently contracted.
A posture characteristic of spasticity is legs stretched out straight and stiff and arms bent up at the elbow. Other areas commonly affected by spasticity are the shoulders, elbows, wrists, fists, thumbs, feet, toes, knees, thighs, and hips.
The principal characteristics of spasticity are:
- Extreme muscle tightness and spasms
- Physical deformity or abnormal posture
- Restricted movements
- Pain, possibly extreme, potentially leading to secondary spasticity
- Potential dislocation of a joint or organ
- Skin ulcers
- Functional limitations, such as
- The inability to use a hand in daily activities
- Difficulty with transfers, such as from a car to a wheelchair
- Impaired gait
- Impaired speech
The severity of spasticity, which can worsen with time, ranges from mild muscle stiffness to painful, crippling, uncontrollable muscle spasms. Spasticity can be a terrible problem, sometimes interfering with the patient’s ability to swallow, eat, speak, and eliminate waste. It also can be a major impediment to rehabilitation. Cold weather, fatigue, and multi-tasking can exacerbate the spasms.
For survivors who have extreme mobility impairments, spasticity, at times, can be helpful. Stiffness of the lower limbs can support the individual’s weight when transferring or walking.
Often, spasticity resolves with time and therapy, although it may never disappear. A combination of treatments is used to prevent the further shortening of muscles and to reduce the severity of the symptoms:
- Daily exercise, including sustained stretching and range-of-motion movements
- Electrical muscle stimulation
- Casts or braces
- Surgery to release tendons or to block the connection between nerve and muscle
- Oral medication, which can result in sedation, weakness, and cognitive impairment
- Injected medication, which can temporarily block the connection between nerve and muscle, but it has unpleasant side effects and can become less potent with time
- a baclofen pump, which, when implanted into the body and programmed to dispense medication, can reduce spasms. A pump demands a considerable commitment of time and attention by both survivor and caregiver.
Seizures or post-traumatic epilepsy also occur sometimes after a brain injury.
For decades researchers believed that seizures were caused by sudden and unpredictable abnormal electrical activity in the brain. New research suggests that chemicals released by the brain itself, in an effort to repair the injured site, may be the cause.
The symptoms of post-traumatic epilepsy depend on where in the brain the abnormality (electrical or chemical) occurs. Seizures can be confined to a small area or involve the entire brain. Their severity ranges from mild discomfort and disorientation to extreme physical and mental disability. Seizures can last from a few seconds to five minutes.
About ten percent of survivors develop post-traumatic epilepsy and experience continuing seizures. Patients with scarring on the brain from skull fractures, penetrating injuries, bruising, and focal bleeding, are at the greatest risk of having seizures.
A brain injury survivor usually will have her first seizure soon after her injury. The first seizure, however, can occur as much as four to twenty years after the injury, depending on which research you read.
A seizure can be a one-time event or a lifelong problem. Jessica had a seizure in the emergency room soon after her accident, but none since.
Most post-traumatic epilepsy responds well to anti-convulsant medications. Finding the best drug and dosage, however, can take time, and anti-convulsants can trigger unpleasant side-effects. Taking medication, however, is essential. Uncontrolled seizures can further damage the brain.
The symptoms of post-traumatic epilepsy can be subtle to extreme. They vary widely among people.
The subtle symptoms, which are known collectively as an aura, include the following:
- A momentary disturbance in attention
- A brief period of restlessness or disorientation
- Sudden and unexplainable feelings of fear, anger, sadness, and/or nausea
- An altered sense of hearing, smell, taste, sight, and/or touch
- A feeling of being detached from the environment
- Déjà vu (familiarity) or jamais vu (unfamiliarity)
- Labored speech or the inability to speak
- Brief loss of memory
In more serious cases, after experiencing an aura, a person might:
- Stare into space or have a blank look
- Be confused, unresponsive, and unaware of her surroundings
- Act strangely by smacking her lips, swallowing, chewing, picking at her clothing, or wandering
- Not recall the seizure afterward
With the most severe seizures, the person might exhibit the following symptoms:
- Fall to the ground
- Convulse violently with stiff and jerking movements
- Breathe shallowly or stop breathing momentarily
- Roll back her eyes
- Bite her tongue
- Lose bladder or bowel control
Given these symptoms, persons prone to seizures must avoid situations that can place themselves or somebody else at risk. Driving is the most inconvenient of these restrictions, which also include using power tools, climbing ladders, and swimming and bathing alone.
The Impact of Brain Injury on the Family
A brain injury places enormous stress on the survivor’s family. In the first days or weeks, the family is in crisis mode. Day-to-day routines and the needs of other members are cast aside as the family spends hours at the hospital. The focus of attention is on the patient. Everyone is battered by a wide range of emotions: worry, guilt, anger, helplessness, and grief, among others. Later, when the survivor returns home, each family member must learn to accommodate her impairments, adjust to new routines, and, possibly, assume new roles and responsibilities within the household.
There is no single correct way a family should act immediately after a brain injury. Some people are at ease and useful at the hospital. Others are too traumatized to approach the patient. Some people will spend most of their time at the hospital. Others will return to work or school, by choice or necessity. Everyone must adjust in his own way and at his own pace.
The circumstances of the injury may create tension. There may be guilt (“Why did I allow her to buy a motorcycle?”) or accusation (“Why weren’t you watching her?”).
If the survivor contributed to her injury, there may be anger (“How many times did I tell her to buckle her seat belt?”).
Issues among family members, unresolved before the injury, may explode under the stress of the situation. The strength and harmony of the family will be tested by the uncertainty of the survivor’s outcome:
- How well will the patient recover?
- How will an incomplete recovery impact the dynamics of the family?
- How much will the medical costs and possible loss of the survivor’s income upset the family budget?
- How will the family cope as members assume new and unfamiliar responsibilities?
- How will the family manage when everyone returns to their own lives at school, at work, and in the community, but also must care for the survivor?
These tensions can be heightened if the patient is hospitalized far from home. The caregiver can feel imprisoned in a disagreeable hospital setting, lonely and isolated from family and friends, and guilty for not tending to responsibilities at home. The folks at home may suffer from the absence of two family members, especially if it is both parents.
Later, the family may feel isolated when the immediate crisis passes and relatives and friends return to their own busy lives and provide less support.
Adult children, who live away from home, might be torn between two families. They dearly want to help care for their injured sister, but they have more pressing obligations to their spouse, children, and employer.
Jessica and I have no children and I was retired at the time of her collision. So, I was able to focus my time and energy on her recovery and rehabilitation.
Most of the caregivers on the panel, however, were forced to juggle caring for their survivor, their children, their job, and other responsibilities. I have relied heavily on their input to offer the following advice for parents trying to cope with a brain injury in the family.
Coping with Emotions
A brain injury places great stress on every member of the household. If this stress is not addressed, it can tear a family apart. Your children will look to you as a guide, seeing from your words and behavior the gravity of the situation.
Here are nine suggestions for defusing emotional landmines before they explode:
- In general, be calm and in control.
- But, at times, show your emotions. This will tell your children that the emotions they are feeling are natural.
- Discuss your emotions with your children.
- Encourage them to talk about their feelings.
- Don’t give them the impression you expect them to be brave and not show their sadness.
- Listen carefully. Your children may talk about their emotions in a roundabout manner.
- Be careful with older children. Teenagers may appear strong and in control but be hurting desperately inside.
- If you sense a decline in the emotional health of your family, pick up a copy of Missing Pieces: Mending the Head Injury Family by Marilyn Colter, a journalist, mother, and insightful caregiver of her husband, a brain injury survivor. (See page 232.)
- If emotions are running wild, it’s probably time to consult a professional counselor.
Caring for Young Children
It’s understandable that you will concentrate your time and energy on your patient and will spend many hours at the hospital. It’s crucial, however, that other family members — especially young children — don’t feel forgotten. Here are nine ways to keep young children feeling loved and well cared for:
- For nearly all children, trying to keep their lives as normal as possible is the best advice.
- Help them stay in touch with friends.
- Be sure they have their usual enjoyable activities.
- Settle your children back into their normal school routine and inform their principal of the situation.
- Set aside one-on-one time with your children when you are home.
- If you can’t be home, set a time for a daily phone call to catch up with the latest news in their lives.
- Have somebody drive your children to their favorite activities. Try not to let these activities lapse.
- Ask somebody to relieve you at the hospital to allow you some quality time with your children.
- Don’t be surprised if the behavior of your children regresses as they compete for your attention.
What Do I Tell My Children?
You are the best judge of how much to tell your children about your survivor’s injury. Bear in mind, however, that even the youngest child knows a bad thing has happened and may imagine all sorts of horrors until his questions are answered. Here are ten ways to keep your children informed and prepared for an upheaval in family life and routines:
- Encourage your children to ask questions. Answer these questions as simply and accurately as you can.
- Fit your explanations to their level of language, maturity, and comprehension.
- Use concrete examples: “Your mother may have trouble speaking” or “She will be exhausted when she comes home.”
- When you don’t have the answer, admit it. Promise to find the answer.
- If you’re having trouble answering questions, find someone who can.
- Provide repeated opportunities for children to ask questions and to absorb what’s happened.
- Share new developments, good and bad, as they occur.
- Avoid well-meaning clichés like “Everything will be all right.” With a serious brain injury, everything will not be all right. You don’t want to create false hope to be cruelly shattered later.
- Be sure everyone grasps the gravity of the situation to the best of their ability. This provides time to adjust to the changes in your survivor before she returns home.
- Your children may have questions they are not comfortable asking you. See if they want to speak to someone else about your family member’s injury.
Bringing Children to the Hospital
You also are the best judge of whether your children will benefit from visiting your survivor in the hospital. Here are eight guidelines to keep in mind when weighing the pluses and minuses of a visit:
Don’t force a child to visit an injured family member.
A possible exception to this rule is if the patient is alert and a visit with the child will be therapeutic.
Prepare your child for what he will see at the hospital:
- The patient’s appearance and behavior
- The sounds and smells in her room
- The wires and lines connected to her
- The machines surrounding her
- How he should act with her
Let your child choose when and for how long to visit.
Tell your child that it’s okay to be nervous or scared.
Introduce your child to the doctors and nurses. This will give him an opportunity to pose questions to the experts.
If he’s willing, encourage your child to help care for the patient. This may comfort both parties.
If your child doesn’t wish to visit, he may feel guilty. Encourage him to participate in caring for your survivor in other ways, such as drawing pictures and sending cards and letters.
Children Growing Up Too Quickly
A brain injury in the family can force your child to grow up too quickly if he’s overloaded with new responsibilities. Be careful.
Giving Older Children a Role
Some older children will want to be involved in their family member’s recovery. This should be encouraged to the extent their maturity permits. Others will not. This is okay, but asking them to assume more responsibility at home is reasonable.
Your older child can do some or all of the following:
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Checklist for Success #4: Preparing Yourself and Your Family
___ Have you decided how you are going to allocate your time among your survivor, your family, your job, and your other responsibilities?
___ Do you realize that doctors have different ways of assessing and treating brain injury? Some are more conservative than others at deciding when a patient has advanced a level on the Rancho Scale. [See page 154.]
___ Are you prepared for your survivor’s potentially disturbing transition from her coma [see page 59] to full consciousness? You may want to limit visits during this time.
___ Are you aware that when your survivor awakes she may not recognize and trust you?
___ Your survivor may confabulate or perseverate. See page 162 for descriptions of these two common behaviors when someone emerges from a coma.
___ Do you know that recovering from a brain injury is not a straight process? Your survivor likely will experience setbacks in her recovery and rehabilitation.
___ Are you aware that three parties—your doctor, the health insurance company, and the rehabilitation facility—determine the next step in your survivor’s recovery: inpatient rehabilitation, a skilled nursing facility, or home? [See page 155.]
___ Do you know that there are six types of impairments your survivor may suffer due to her brain injury?
___ Do you understand that there is a powerful cause and effect relationship among these impairments? Do you know the difference between primary and secondary impairments? If not, see page 158.
___ Do you know that spasticity [see page 167] and seizures [see page 169] are common physical symptoms of a brain injury?
___ Your survivor may have difficulty communicating with you and others. Communication impairments have many different causes. Some are listed on page 163.
___ Are you prepared for some emotional distress and possible behavioral problems as your survivor adjusts to her new condition? The more common emotional and behavioral complaints are shown on pages 164 and 165.
___ Do you know that loneliness is a very common complaint of people living with a brain injury? Social impairments are discussed on page 166.
___ Are you aware that a brain injury places enormous stress on the family? For ideas on handling this stress see page 173.
___ Have you thought about how your children will cope with this family crisis? Some suggestions for making this time easier for them are presented on page 174.
___ What should you tell your children about your family member’s brain injury? This also is discussed on page 175.
___ Should your children come to the hospital to visit your survivor? This question is addressed on page 176.
___ Your older children may want to participate in the care of your loved one. Some ways for them to help are listed on page 177.
___ Do you understand that the presence of a family member or a close friend during rehabilitation will motivate your survivor to work harder? Will you be able to perform this important job? You may want to ask family members and friends to clear their schedules to attend some rehab sessions with your survivor. [See page 197.]