Brain Injury Is: realizing that the people staring into the Metromobility van are staring at you.
"Dave, there is nothing more I can do for you," said the occupational therapist one day. "I think you need the type of program where you can get all the help you need."
Those were pretty strong words for me to hear, since I was not really 100 percent sure that anything was wrong with me. The therapist knew of a program that focused on people with mild to moderate brain injuries and she recommended that I contact the director. This was in the fall of 1989, about two years after my brain aneurysm and before I fully understood why my life was so messed up. Fortunately for me, I made the call that would eventually turn my life around, and steer me in a direction of self-fulfillment rather than self-destruction.
The individual with whom I first made contact invited me over for a tour of the facility and arranged for me to meet some of the staff members who were involved with the program. They were screening me to get a first impression as to whether or not I would fit into their program. I could tell from their questions and comments that they felt I should be there. That was kind of scary, but I am sure that they knew more about what was wrong with me after just one hour than I did after two years. I was checking out the program as objectively as they were checking me out.
They wanted me to start as soon as I could, but why should I if nothing was wrong with me? They said that they were convinced that they had something to offer me that could make me feel a lot better about myself and make my days more productive. That was a pretty good argument, as I had not worked for seven months and I did not think too much about myself at that time. It took several months of haggling between the staff and the County Welfare Department before financial arrangements were completed, a doctor's order obtained, and all the other necessary red tape completed before I could start. In mid-February, 1990, everything was finally set.
The purpose of the program was to help people who had mild to moderate brain injuries to function at the highest level they could in their daily lives and the community at large. The program provided an opportunity to be with others who had similar problems, and maybe that was the most important aspect of the program. For the first time, I saw that I was not alone and that others functioned as I did. I also saw that with a lot of work and effort people could improve their abilities to function around other people.
One of the first things that I learned was that despite my injury, I was still responsible for much of what I did. I had to be at certain places on time; I had to assist with setting up my own transportation; and I had to begin communicating with other people again. Once in the program, I could not sit back and do nothing. The injuries of the other clients there were different from mine, both in severity and in problems we encountered. Through it all, however, the staff provided challenges to each of us at whatever level we were at.
The actual program was divided into four basic units. The first unit of the day centered around communication skills. Daily, we had to bring news items to discuss. In this unit we had to "learn to remember" again. We learned to develop strategies to remember appointments and made things to-do-lists. We learned also we really do have a responsibility to take care of ourselves. In other words, it is important for us to be of our own caregivers.
In the next unit we each had an opportunity to make something with our hands. We worked with leather or ceramics and a few other materials. That was our favorite class because we had all the birthday parties, graduation parties, parties celebrating full moons, or any other good occasion in that class. We had to plan these events ourselves, so we even learned from that. Most of all, however, we learned we could do more for ourselves than we thought we could.
The third unit consisted of the activities of actually surviving in the community. We learned to make use of public transportation, eating out in restaurants and making sure we could figure out both the bill and the tip, plus find our way around shopping malls. We learned about vocational matters, such as interviewing techniques and filling out job applications. This was hard for a number of us because we had had jobs prior to the injuries but now many us had lost our jobs or abilities to work. This unit also helped us with problem solving and planning, and many other facets of everyday living that we needed to make it on our own.
In the last unit, we could explore our own personal problems in a safe environment. We learned much about brain injury and the effects it has on our personal lives. We learned relaxation techniques and strategies for coping with memory loss depression, family problems, and all of the other many problems associated with our injuries.
In addition to the more formal coping strategies we learned, were all able to find some humor in what we could, and even in what we would forget to do. It would usually not take too long for new members to feel at home in the program and to start to feel a little less stressed out in their daily lives. The group was a safe place. Not only were we challenged, but many times we challenged the staff by demanding answers to difficult questions. For example, what is recovery? Are we improving because our brain is healing or because we have learned new strategies? We at times forced the staff to view life from our vantagepoint and not theirs. Thankfully, they were as willing to learn from us as we were from them.
For all of us, the program was a stepping stone to a life with meaning. For me it was a time when I again could see something worthwhile in my future. I had lost my goals for the future and was really without direction when I entered the program. I learned to adjust my goals to a more realistic level, based on my present abilities, and not what they had been in the past. I learned that there were some things that I could do and feel good about, even if they were not connected to what I had previously done. One of the most difficult lessons I learned was that I must accept myself as I am now, with the abilities I have now, and not let "the used to be's" weigh so heavily on my shoulder that I cannot move forward with my life. A hard lesson to learn!
There must be similar programs throughout the country. The program I have described is the one at Courage Center, in Golden Valley, Minnesota. It is hard to imagine where I would be today if I had not made an attempt to find help for myself. I might not have understood what my brain injury had done to me, as no doctor had ever given me an explanation. In fact, it was two years after my aneurysm before I found out that what I really had was a stroke. No one ever told me that. I might still be sitting in a chair for six hours a day wondering if I could do anything for myself, fretting about all the skills I had lost, rather than acting on the skills that remained and are yet to be developed. Not a bad little program. It took one year of my life, but gave me many years to look forward to. My hope is that all persons with brain injuries, of any severity, have a chance find some help and understanding.