Our new friend, Drew Seibert, at Breckenridge. Please click on this great short video about adaptive living from Drew: http://youtu.be/Xj_GZIjCfZg
|Brain Storm: A Journey of Faith Through Brain Injury||
Following a brain injury that changes your life completely, how do you start to move forward to experience all that life has for you? And yes, life still does hold much for you, but you just have to perhaps look a little more creatively for it. The injury is definitely a life changer, but it makes you look in new directions to adapt your lifestyle to do things you used to do or to find new outlets.
Adaptive snow skiing and water skiing (both known as sit skiing--just depends on if you are on the snow or water!) have become highlights of our lives after Bruce's injury. He was a hotdog snow skiier and water skiier before and thought he'd never be able to do them again. However, through Shepherd Center and a group called Alpine Adaptive Scholarship Program, he has been able to experience both--in Aspen, CO, Breckenridge, CO, and Lake Allatoona in Georgia. Explore the internet for adaptive ability activities such as painting, gardening, biking, skiing,etc.
Our new friend, Drew Seibert, at Breckenridge. Please click on this great short video about adaptive living from Drew: http://youtu.be/Xj_GZIjCfZg
Bruce sit skiing at Lake Allatoona, GA.
Brain Storm has made it to AudioBook format!! It is available for $3.99 at: http://bookstore.westbowpress.com/Products/SKU-000622823/Brain-Storm--A-Journey-of-Faith-Through-Brain-Injury.aspx
We are so excited that it is finally in readers' hands--or ears! A year has passed since this project began. We were made aware that many brain injury survivors have difficulty reading a book, but they can enjoy and be encouraged by listing to one. So the journey began--those whose experiences are included in the book were able to read their own stories aloud. That's our favorite part! Bruce and I read our portions as did our daughter, Rachel, to make it more real and personal.
We hope this audiobook will bring hope and encouragement to those who listen.
Sorry that it's been a while since we've blogged. It's been a busy, busy three months. We went to the Quad Rugby Tournament at Shepherd Center. What an amazing--and dangerous!--sport! Those guys/gals play for blood! It is great to see them enjoying a rough and tumble sport as they are living their "New Normal."
We were given the privilege to be the Keynote Speakers recently at the National Recreational Therapists' Seminar in Chattanooga to express to them (for 90 minutes!) how much recreational therapists have meant to Bruce's recovery and rehabilitation. It was a wonderful event for us to be part of, and it gave us the opportunity to say "Thank You" to many who give so much and don't often get to see the results in the long run.
Our main theme was and continues to be the following:
Do not let what you cannot do interfere with what you can do.--John Wooden
Holidays bring such mixed emotions--joy, excitement, anticipation, sadness, regrets, depression. For a brain injury survivor, all of these can be experienced--and mood swings can go to the extreme in either direction. One minute you can feel wonderful "warm fuzzies" from your loved ones, and the next minute you can be so down in the dumps that you think you'll never come out.
Attitude is a state of mind. Sometimes you have to work hard to make sure your state of mind is moving in the right direction. Bruce has found that if he does two activities each day, he feels accomplished, and this keeps his thoughts moving forward. These activities may be as simple as going to Starbucks with another brain injury friend, or giving our dog a bath. We frequently take her on walks, and Bruce loves being outdoors with her. He may talk on the phone with a friend or read or listen to a book. If we go to the gas station, he fills the tank which is rehab in itself! It is so important to interact with other people whether they are family, friends, or part of a brain injury support group.
No one said being a caregiver was easy, did they? You have to be a psychologist, activities director, therapist, nurse, and friend! Being a caregiver certainly provides many opportunities for growth and stretching of your capabilities!
The New Year of 2013 presents us all with the opportunity for a fresh start in developing skills, making new friends, and moving on in new directions. Things may not be like they were before the brain injury, but they can still be good and maybe even better as together you both move forward in your "New Normal."
Although brain injuries occur in different ways, many deficits that remain can be very similar--unclear thinking, loss of short-term or long-term memory, word recall in conversation, personality changes, balance issues, various levels of loss of use of one or more limbs, etc.
These residual deficits may gradually disappear or improve over time. Some survivors have reported continued improvement for up to eleven years after their injury. However, not all deficits get resolved. They may become a permanent part of the survivor's "new normal." Learning to live with these alterations to your life and move on are vital to having a healthy outlook on life.
Look for ways to adapt your situation to your desired activities. If you like to read but your eyes won't focus on the page, they jump from line to line, or you can't retain in your mind what you are reading, get audio books from the public library. Listening to a novel can be as satisfying as reading if your problem is how to get the story into your mind. Look for alternatives and ways to adapt, and "hearing" books can be just as fulfilling as reading the printed word.
If you like to send emails but your fingers don't have the dexterity to type, "Naturally Speaking" is a computer program that allows you to speak into a microphone, and the program will type your words on the computer. With the IPhone 4 & 5, you can speak to "Siri," the voice activated feature that will do what you tell it to--insert the email address, type the message, and send it for you.
If you like to water ski or snow ski, there is adaptive skiing for all levels of deficits. Look for adaptive ways to do what you enjoy--or look for new activities that will give you pleasure. Searching the internet is a wonderful way to explore the world out there from your home. If you can't type, give directions to someone who can as you search together. Don't let the typing deficit stop you from the real goal of searching the web for adaptive ways to enhance your life and the lives of those around you.
Which two have brain injuries? (The one in pajamas doesn't count!This was taken at 7am!)
Each brain injury is unique in what was its cause and what damage was sustained--and yet brain injuries can be similar on various levels of recovery. No matter what the type of injury is--Acquired Brain Injury (stroke, abscess, aneurysm, or damage to the brain caused by something abnormal within the body) or Traumatic Brain Injury (from car or motorcycle wrecks, falls, football accidents, or any external cause from outside the body)--recovery from both types of brain injuries can be very similar.
After rehabilitation, deficits can remain that are characteristic to both ABI and TBI--unclear thinking, loss of short-term or long-term memory, word recall in conversation, personality changes, balance issues, dizziness, various levels of loss of use of one or more limbs, etc. At this point, the survivor moves forward to live his life as he adapts to his "new normal." However, those around him, and particularly the world around him, have more difficulty adjusting and accepting how things are permanently different due to the brain injury.
It's easy for the caregiver to gradually slip back into the old routine thinking things are back to normal. Things will never be back to normal after a brain injury! The deficits that are now experienced by the survivor affect those around him as well. Accepting and remaining aware of how the deficits affect the survivor are vital for the caregiver to experience.
Living out in the world is a challenge for the survivor because a brain injury is known as the invisible injury. People often say to Bruce, "Why, I'd never know you had brain surgery." Well, WE know, but they can't see it. So for them, it doesn't exist. A friend of ours who struggles with thinking and cognitive abilities, worked full-time at his business before his accident. Now, fatigue takes a toll on him each day as well as the frustration of not being able to think through issues as he used to. His co-workers are short with him when he doesn't react or think as quickly as they do. They expect life to be "back to normal." It is--but he has a NEW normal.
We met a beautiful 22-year-old girl who was involved in a car accident. Now she is two years out from the injury, and experiences severe expressive and receptive aphasia. The difficulty of expressing words and thoughts is an every-day part of her life. She also cannot receive or sort through information that she hears in order to respond. You'd never know by looking at her beautiful face that anything was different from anyone else--the invisible injury.
If ten people stand in a line and five have brain injuries, you would have a difficult time distinguishing the brain injury survivors from the others until you talk with them or watch them move.
The moral of the story is to be patient with all people. You never know which ones have brain injuries and may need a little extra time to think things through. What they have to say or contribute is important. It may just take a little more effort to share it with you! But it's worth it--for both of you.
Rachel and two of her guys!
We often limit ourselves. But as brain injury survivors, and caregivers, we need to look for what we CAN do instead of focusing on what we can't. That's what the "new normal" is all about. The road of life has definitely giving us a sharp left turn, but it can still lead to fun. You just have to look for it. This past weekend Shepherd Center sponsored an adaptive skiing day at the lake--one of three they put on each summer. Survivors and their caregivers came, swam, did sit-skiing and had a blast at the picnic lunch on the shore. Survivors want to do as many "normal" things as possible, and with adaptations, the possibilities are unlimited.
As each of the survivors came back to the dock after sit skiing, I would ask a stupid question, "How was it?" The answer was unanimous each time. They would smile broader than the face is intended to allow, and say excitedly, "It was amazing and fantastic. And I get to do it again!!" Nothing in the world can outshine that exhuberance!
Scott McEvoy had an unforgettable time. He was prepared by two of the therapists in the water to sit ski. Then away he went with two other therapists close behind on a jet ski to swoop in and offer assistance, if needed.
After sit skiing, we had our own driving school. Tony Valdez is anxious to drive again--when he is ready. So we took him and Scott McEvoy to our VERY large church parking lot and let them drive around with Laura in our old car. They did VERY well, so we are encouraging them to contact Shepherd Center to take their driving class. The Shepherd instructors are the experts! They can tell Tony and Scott if they are up for the task.
The possibilities are unlimited when you are blazing a new trail on your journey of life. Don't be quick to say, "I can't do that." Focus on "How can I adapt to be able to do what I'd like--or do something new!" It's easy to get caught up in "why did this happen to me?" or focusing on the past. It's much more fun to focus on the present and the future to see what you CAN do to have a full and meaningful life. The possibilities are unlimited!!
Going home is always a highlight of the summer for me, but this recent return trip to Du Quoin, Illinois, was especially memorable. We had wonderful times with old friends and relatives, and were given the opportunity to share our message in two worship services with people who know us best. I grew up in this church, was married there, brought our children there, and now we were able to share about God's grace after brain surgery there.
We also were blessed to talk with six separate brain injury survivors and to encourage them. One area of brain injury that we discussed was how anger can be uncontrollable at times. The unaffected brain has the ability to “gate” life’s experiences. We can be approached by a situation and feel the tension rising. We can decide to stop the discussion when we reach a seven on the anger scale so it doesn’t escalate to a full-blown rage. However, the brain injury survivor doesn’t have that “gating” ability. He can experience calm in his life, and then when he feels threatened, frustrated, or frightened, he can go from a one to a ten in an instant and explode uncontrollably. When the gating mechanism doesn’t kick in, he feels an eruption of emotion before he can recognize what is happening—and it’s too late.
Anger after a head injury is quite different than “normal” anger. This type of anger tends to have a quick “on” and a quick “off.” The person can be in a good mood until something small irritates him, and he suddenly gets very angry. This anger doesn’t seem to last very long. The person can be angry for a few minutes, and then quickly stop being angry when someone changes the topic of conversation.
The caregiver can be caught off guard with this type of anger. The difficult part is to keep in mind that this is a brain injury reaction and that the caregiver can't be caught up in the argument. Instead, the best thing to do is keep quiet, don't feed the survivor's anger, and walk away for a few minutes, if possible. Distancing yourself until calm is reestablished gives the loved one a chance to return to calm on their own. It's a crazy balance of being a caregiver, nurse, therapist, and psychologist all at the same time!
As we have been traveling to various churches, TV interviews, and radio interviews, we have become even more aware of how many people have been touched by a brain injury in some way. They either know some one who is a brain injury survivor, care for one, or are a survivor themselves. They all need someone to talk with, to listen, and to offer encouragement. We ALL need some of that once in a while, but when you feel you are the only one in the world dealing with the particular issues that a brain injury brings into your life, it can be extremely overwhelming.
The family support groups that we lead at Shepherd Center on Saturdays continue to give our lives purpose and show us the need for our book, Brain Storm. In the past couple of weeks, we have talked with families whose loved ones have had strokes, brain bleeds, car wrecks, falls, bicycle wrecks and the ever-present motorcycle accidents. They are all unique experiences, but the recovery of the brain and the trauma the families endure are very similar. This weekend we met with four families who had just started on this journey. We talked about their various events, how they personally were handling their lives being turned upside down, and offered hope and encouragement with the constant reminder that it takes time--a long time--but each step forward is one worth celebrating. Little steps become very big ones in the grand scheme of things.
We also checked in with families and patients with whom we had counseled on previous Saturdays to see how they were progressing. It warmed our hearts as they broke into big smiles when they saw us. They were anxious to tell us of their great strides over the past week and what a source of strength and help our book has been to them.
Two families are preparing to move on to Pathways, Shepherd's outpatient rehab center. THAT is a huge step, and we rejoice with them. It's amazing how a brain injury can draw you into close relationships with people you otherwise would never meet. They bless our lives! May your life be blessed this week as you reach out to those around you who can use some encouragement. A simple smile can often do the trick!
You are just strolling through life, trying to keep all the balls in the air that you are juggling at the same time, and then God gives you a divine appointment--you know, one of those that you can't possibly engineer yourself!
Last week we were interviewed on Moody Radio Network which broadcasts all over the nation. We have counseled with brain injury survivors in California, Florida, Tennessee, Vermont, Pennsylvania, and New York because they heard that one-hour interview.
There was one listener who called in to the show, but we ran out of time before we were able to get to her. She then went to this website and emailed us. I'm not going to tell you all of her story, but her husband had a traumatic brain injury four months ago, and she is searching and struggling with how to help him, take care of their little children, balance the budget, and generally keep it all together. We emailed back and forth a couple of times, and I finally asked where she lived. Illinois was the answer with her comment that it is really far from Georgia--but maybe someday we could all meet.
Sometimes God just seems to work overtime which really boggles my mind!! In three weeks we are scheduled to go to Illinois to speak at a church, do a book signing, and visit with my 93-year-old aunt. Where does she and her precious husband live??--a one-hour drive from my aunt's house! Soooooo, we have made arrangements to meet, talk, and have lunch while we are in the area.
God makes these divine appointments, and when He does, you know you are right where you're supposed to be. I love it when you can see God's fingerprints all over something!