Lived Experience

Hopes and Dreams, Myths and Realities

A journey through the world of brain injury

by John W. Richards

This brain injury journey has been long and sometimes difficult, sometimes scary, terrible and confusing, occasionally positive, and once in a while downright inspiring.

My own journey actually began pleasantly. In 1992, I was at church when I met the young, attractive Carol Osborn. We dated, fell in love, and married. She was a survivor from 1986, so I learned about brain injury thru her experiences and what she still had to deal with. She encouraged my involvement with the Brain Injury Association of New Hampshire; I became the president of the board in 1996. Having worked in social work and human service administration, it all seemed to make sense. At that time, I was a family member and a professional, for those who are interested in categories of involvement.

My involvement made a whole lot more sense and took a totally unexpected and rather dramatic turn on August 8, 2000 when I sustained a cerebral cavernous malformation while bicycling --- more commonly known as a “brain bleed.” News of my injury, I am told, was sent out in almost real time on the national BIA listserv by Susan Connors. Steve Wade, Executive Director of BIANH, a longtime friend and all-around good man, nicknamed me the poster boy for “ brain injury can happen to anybody,” because here it had --- Who would expect the perfectly healthy Chair of the BIA State Assembly to become a survivor himself? Dr. Jim Whitlock of Northeast Rehab and colleague on the BIANH Board of Directors at the time, became my neurologist.

So what have I learned? Well, let me tell you all, that in my various roles as family member, professional, human service administrator, patient and survivor that if you have never been a survivor, you really don't want to be one. Prior to my TBI, my wife often said “I wouldn't wish it on my worse enemy.”

Let me tell you a few other things that I have learned over the last 20 years:

As a social worker in a brain injury rehab center: Resources are incredibly difficult to find: try placing someone out of rehab into the community --- it will typically take at least twice as long as you think it should, if you are lucky, and -- shocking news – the system does not always make financial sense. If you need supports in the community, you better be sure you're in some eligible category... but I could go on all day about this.

As a family member: I cannot prove this at all, but I am totally convinced that survivors who have loving, caring, and involved families do substantially better and have better recoveries and better outcomes.

As a patient, I learned a lot of things that I never wanted to know : feeling powerless and not in control of your own life is terrible, and the stigma associated with brain injury is a very real thing. I also learned that the insurance company found a simple, straightforward way to define that I was “ cured” much better than I could --- so many days or so many dollars and you are “all better” whether you are “all better” or not.

As president of BIANH: At least once a week, Steve Wade, the Executive Director, and I would go through a little ritual of talking about the many needs and trying to figure out how to prioritize them. The needs are far more substantial than the resources; all we ever could really try to do was to bring together as many caring family members, survivors, professionals, and dedicated folks as effectively as we could.

As the State Assembly Chairperson I learned that there are people all over the United States in places large and small, some with almost no resources at all and some with what seemed to me like a good set of resources who are struggling, struggling, struggling to figure out what to do about this epidemic. We shared information and ideas as best we could in spite of differences in politics, geography, cultures, and all kinds of other issues, but what held us together was a common goal.

As a BIAA Board member I learned that there are some incredibly dedicated and hard-working, oftentimes brilliant people out there trying to tackle this issue, but we all had to struggle together to identify priorities. We also had to make difficult decisions, because we all had aspects of brain injury wanted to see a major focus on, but there was just not enough money, staff, you name it... to do everything.

As a brain injury support group co-facilitator I have found that it is easier to go on this journey with others --- especially people who have been down this road before us , or with us; people who understand what we struggle with.

As the TBI Challenge Editor I have learned that people are incredibly generous of their time and are very willing to share their expertise. There are a host of fascinating, interesting efforts going on around the country to try to figure this all out, and people seem universally willing to share what they have learned.

As BIAA staff , I cannot believe how hard some of my colleagues work, how dedicated they are, nor how much time they put into the cause.

No matter what specific label I have worn or what job I did at different times ( even helping to organize an Air Show – who would have imagined that when I was in the ICU? ) , I have stayed involved and done my best to move the movement forward. It is too important, there is too much at stake and to be done, not to.

No matter who you are, or where you are, or what your resources are, you can help the brain injury community move forward.

The brain injury community is not perfect. The people who volunteer and the people who staff the associations try hard and work incredibly hard on behalf of all the survivors and family members with whom they may have contact. However, at both the state and national level we struggle with an incredible lack of awareness; 30 years after the founding of the Association there is still a tremendous need for advocacy, education, research, and a host of other things.

We still don't know the exact answer to what should be our highest priorities. (Is there even one?) What should we spend most of our time doing? Is it a better thing to raise money to work on researching a “cure” or “cures”, or should we work on prevention and education , or should we work on quality of life issues for those who have already sustained a brain injury, or should we work to build greater capacity? Which?

There has been inspiration from friends and colleagues along the way. For example:

From Geoff Lauer: In thinking over my 20+ years associated with the Brain Injury Association of America I am struck most by the enduring commitment of advocates across the country. You are like the oil in an engine. You coalesce around local, regional and national obstacles and facilitate the necessary movement towards appropriate services and supports for persons with brain injury. This includes the hundreds of support groups, fundraisers, membership drives, conferences, and legislative efforts that unfolded each of the last 360 months.

In my ten years on staff at the Brain Injury Association of America I had the honor of serving our state affiliates and meeting with, and learning from, members of many. From Alaska to Florida, New Mexico to New York. I met and worked with individuals with brain injury and their families who were expending huge efforts to learn, and then teach others, how “to live well with brain injury”. To you we all owe a deep bow of thanks. You are the mother in Honolulu who makes sure the newsletter gets out every month, the parents in Waterloo who sacrifice their evenings processing membership renewals, the father in Concord who runs the board meetings and supports staff. You give freely of your time, talent and treasure. You have been, and are, the foundation of BIAA’s efforts and success.

Geoffrey Lauer became a volunteer with the Brain Injury Association of Iowa in the early 1990’s. He served as chair of the Board of Directors of BIA-Iowa and then joined the staff at BIAA from 1996 – 2006 in the capacity of Regional Director, and then National Director, of State Affairs. He currently serves as Executive Director of the Brain Injury Association of Iowa.

And from Cheryl Price about progress: "One of the major differences in brain injury services in the last 30 years has been the tremendous quality of life improvement that has occurred from providing services and supports in the community through home and community-based services as opposed to keeping so many people in institutions. We got there through a tremendous amount of personal advocacy."

From Marilyn Lash: “Over the years, the leadership and resources of the Brain Injury Association of America have had many changes. But the commitment to being a strong voice for the individuals, families, and caregivers who live with the consequences of brain injury every day has been constant. Whether it is advocating for legislation, developing public policy positions, or supporting funding for research, the mission remains focused on building a better future for the brain injury community.

And finally, in closing, I have also learned that if every single person in the United States today who has been touched by brain injury would donate $1, yes ONE dollar, or contribute one hour of their time, or would call their elected officials, we would be far ahead of where we are today.

HOW DO WE MOBILIZE OUR STRONGEST RESOURCES?

To quote from Hippocrates, a doctor in ancient Greece, c. 400 BC :

"No head injury is too severe to despair of, nor too trivial to ignore.”

In conclusion: “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has. -Margaret Mead “

That small group is BIAA and the state affiliates, a lot of survivors, family members and professionals, support group leaders, fundraisers and many, many friends....

Best wishes on your journey,

John Richards