Recovering from a Brain Injury

Laura Taylor, Lee Livingston, and Jeffrey Kreutzer, The National Resource Center for Traumatic Brain Injury, Virginia Commonwealth Model Systems of Care
Learning to Be Patient with the Idea That Recovery Takes Time

For most family members, brain injury brings on many sudden and unwanted changes. Most people want their lives to be normal again as soon as possible. Often survivors and their family members describe feeling frustrated because progress comes slowly. You may have to wait a long time to get a doctor’s appointment, have tests done — and learn the results, qualify for disability benefits, or receive return phone calls. Waiting often leads to feelings of impatience and frustration. Try to realize that getting irritated or angry about the lack of progress can cause you to feel worse. Becoming irritated and angry can also scare off the help and support you need from family, friends, and professionals.

Learning about the normal recovery process is a first step toward learning patience. The recovery process has two parts — physical recovery and emotional recovery. Physical recovery means getting your body to work right again. Physical recovery is usually faster than emotional recovery. Emotional recovery, feeling good about yourself and your life, can take up to five or 10 years or even longer. People with more physical problems need more time for emotional recovery.

For most people, recovery is not a smooth process. Sometimes people will get better and better for a while and then have a setback or stop making gains. “Plateaus” or “taking a few steps backward” are normal parts of the recovery process. New problems and stresses can arise and slow progress as well. New stresses may be or may not be related to the brain injury.

We have talked to many family members and survivors about patience. Here is a list of their suggestions, which may help you master the art of patience:

  • Being patient may be seem difficult, but remember that you can choose to be patient or impatient. You are the best person to be in charge of your emotions and the way you act. Your body is not "wired" to be impatient. Trying hard to be patient will get you the best results.
  • Be persistent. Being persistent and working hard are the best ways to improve your life and help your injured family member get better. We’ve found that the most successful survivors keep picking themselves up after they fail, learn from their mistakes, and try again. When you run into roadblocks and barriers, try tackling the problem in a different way, but always keep trying.
  • Remember that success is relative. Often we get a set idea of what success means. After injury, you may still be trying to use the same ruler to measure success as you did pre-injury. This may lead to disappointment and frustration for you and the survivor. Try to figure out a new way to judge success. Instead of comparing people to how they were pre-injury, focus on more recent experiences. Think about progress that’s been made since the injury.
  • Focus on accomplishments not failures. People have a tendency to focus on the negative, on failure. Doing so often leads to feelings of sadness and low self-worth. Instead, try to focus on progress and accomplishments. Keep a list of gains you notice your family member — and yourself — making from day to day. Monitoring progress will help everyone in the family feel more positive and hopeful.
  • Celebrate small steps forward. Usually, we reward ourselves only when we’ve achieved the goal we’re shooting for. Give yourself credit for the small steps you achieve toward reaching your goals.
  • Avoid becoming overloaded. Impatience often comes about when we are overloaded or feel overwhelmed with demands and responsibilities. Remember that taking on too much can lead to frustration and impatience — especially if you take on too much too soon.
  • Ask for help. When you feel yourself becoming overloaded, ask for help from your family, friends, and professionals. They’ll appreciate knowing what they can do to support you. Being able to take a break from solving the problem yourself will also allow you the time to slow down and find a better solution.

Remember you are only human! Everyone makes mistakes. Try to learn from your mistakes to make your future better.

Posted on BrainLine June 19, 2009.

"Learning to Be Patient with the Idea That Recovery Takes Time," from the National Resource Center for Traumatic Brain Injury, Virginia Commonwealth Model Systems of Care. Reprinted with permission. www.vcuhealth.org.

Comments (5)

Irritability is a symptom. Rage is a symptom. Patience is robbed from you.

Here's something I wrote and you need to read it....

I’m overdue for an update about my brain injury and I’ve been holding out because I haven’t known what to say and before now there were reasons not to say it. I have also wanted to respond with more than a stock “I’m getting better little by little” and shed a little light on the fight.

My condition has “stabilized” which sounds positive, but in my opinion is not. While it’s true that I’m not getting worse and that’s great, I’m also improving in only the slowest of manners. I can not work and will not be able to for the foreseeable future. Unfortunately recent events including a bike accident over the summer of 2017 due to poor judgment, lack of urgency control and impulsive decision making (all symptoms) resulted in a severely dislocated thumb and probable concussion creating a setback. I have not given up and will continue working toward a goal of being back in the position of not only putting myself to work but others as well. If that’s not possible then trying to help people in similar circumstances who have not yet recovered to the place I’ve achieved.

I’m proud of what I’ve done so far. I’ve survived. A lot of people in my circumstance haven’t. This is an injury that really messes with you. There is pain. There is loss of cognitive ability that can not be sufficiently explained. There are nightmares and insomnia, loss or gain of weight. There are doctors and therapists that don’t believe or understand your symptoms and others, lifesaving others, that “get” what’s going on and become your advocate. There is the rare day that you feel so fine that it all seems like a nightmare that you can barely believe is the truth, until symptoms and pain materialize to remind you, it is. There are systems in place that force you to lie down your worst self in front of them in order to get them to do what they should, and what you need them to do for you. The process is humbling, humiliating, emasculating and terrifying. They have the power and it requires a file cabinet of paperwork that I can not do. Without the help of my great love and my medical team I would have not made it this far and I mean that in the most literal of senses with the most dire of consequence.

I am a lucky man. I’ve, with the help of my partner, put together a wonderful team and continue to search for more. More healing and recovery methods, compensatory skills and coping techniques. We had parachutes in place, had listened to professional planners, lived our lives fully and had put aside for a rainy day… mostly. When the accident happened we had friends, co-workers, acquaintances and strangers help out, especially in the beginning when everything was so difficult and uncertain. We’ve had luck and love. There is nothing more that I could ask for.

This next part is difficult for me to admit to, but will for educational purposes. For all of us dealing with a brain injury, we each are unique with our own individual symptoms and effects. I have headaches that are so painful that I contemplate my very existence to escape them. I am thankful when they fade to just a severe migraine, because that, I know I can medicate. At times I can become so sensitive to sound and light that I put paper towels down before placing a plate or glass on a stone counter-top and wear dark sunglasses in my home so I don’t have to close curtains, which I may still need to do or put on a mask because too much light comes through my eyelids. Music has been taken from me because it’s only so long before it becomes painful and even as background it will shorten my other abilities. Light is inspiring but difficult to manage. Company is desperately needed but difficult to take and like most activities is a ticking time bomb until symptoms begin. Keeping track of and maintaining conversation becomes difficult. Movement and light can make my head spin especially when confronted with scrolling on a cell phone or computer. Action films, televised sports or moving in a vehicle are also triggers. Sleep is elusive and unrewarding as it gives way to nightmares and thrashing that has had me at times binding parts of my body so I don’t hurt myself again or my partner. Bedtime, instead of a comfort, becomes something one becomes wary of. This worsens the insomnia and a good nights sleep only comes a couple of times a month and I wonder upon rising each morning how much pain will I be in as I achieve a waking state. Irritability, a symptom, only barely describes my mood as I become ridiculously unreasonable and “horrific,” unrecognizable even to myself. Patience, which took years to cultivate, evaporates, sometimes turning to rage. I’ve lost the ability to manage my eating habits and digestive process leaving me in a body with weight loss that took months to adjust to having for the first several years and now a heavier one that again takes getting used to and effort to maintain. Electronic screens (except a Kindle Paperwhite) in time become painful and nauseating to watch. Travel becomes a burden where I must proclaim my difficulties, deafen myself with earplugs, dim my vision with dark glasses or a mask avoiding as much of the fervor as possible finding quiet-ish corners if possible, planning days of recovery after. Abilities to control emotions dissipate leaving me inappropriately laughing or more commonly crying when I try to express the things most important to me. And then I get confused, forgetful, inarticulate and unable to think clearly, decision making abilities gone, reason, gone, control lost. Challenges exhaust my brain so significantly that it just shuts down, which while exhibiting itself as blurry vision and then a “nap” is really just a controlled passing out with cognitive failure and blood pressure falling to levels of 90 over 60 with a lack of choice over my very consciousness. Multiple challenges like dining in restaurants with friends, managing sound, conversation, and attention wear me to the point of exhaustion within an hour or two. And prior to any event I spend hours alone reading or quiet to not poke the bear. Conversely the loneliness is palpable. All of the things I used to do to manage stress, biking, singing, drinking, hanging out with friends, having dinner parties, cooking for people, acting, diving, dancing, design, carpentry and more have all been taken from me and I’ve only preserved, meditation, reading, walking, some yoga, thrifting, swimming, fishing, limited biking and controlled contact with a select few of my family and friends for limited periods of time.

Please recognize and know that when you meet or are dealing with ANYONE, you do not know what they may be coping with. They may look fine but struggling as I am. You’d never know with me… mostly. I don’t let myself be seen when I’m not in a time or place where I’m comfortable. And that’s not every day. When I keep quiet and inactive, symptoms are less likely to get stirred up, but that’s not the way I live my life. I do what I can, when I can, and push the limits I can, every day that I can. That’s the prescription for now and what I will continue to do until I can live a much more rewarding life. I am enjoying and thankful for what I have, the people around me and my surroundings, but I want more.

After my accident I could not put these words in place, give my situation any eloquence of explanation even to therapists and doctors… and this may be the case with someone you know who is experiencing this condition or these issues and are unable to explain their difficulties. I know at least a half a dozen people that I’ve known for over a decade that are in similar but different circumstances. We have improved each others lives with information about therapies and an understanding of each other. I am SO grateful to them for their help. Understanding and learning the management of symptoms allows me to live as fully as I can and gives me the ability to push at limits. I hope this has been helpful to understanding some of the range of what a head injury can do and I encourage you to pass it on should you think it might be useful.

I’ve been dealing with my brain injury since 2012. I’m reading this reply because once again like every other night, I am awoken from a dead sleep with extreme anxiety coming out of what seems to be nowhere. I just want to say thank you for writing this. You finally put into word a big part of what I go through everyday.

No, I'm sorry to say there is no fix. My son ran a high fever from a infection when he was 3 years old now he is 31 and he just seem to get worse. In and out of hospitals. They can help him. We just take one day at a time and pray the good Lord will help us all. It hurts the whole family to see him this way. Lord only knows how my son feels. He can't express himself and tell us how he feels. God bless you all that reads this. I do know what you are going through. Looking through a mom's eyes.

Why do TBI/ABI pages put things like this up that say there is a fix for our injury? When any TBI/ABI survivor out there knows that there is no fix for our injuries.

You need to do some more research.