WHAT EVER HAPPENED...? "Support Groups"

I attend three very worthwhile support groups about brain injuries. I have learned SO much from all three in different ways….

The first group I joined is held at the RCAL building in Kingston, NY. “RCAL” stands for “Resource Center for Accessible Living, Inc.” Our group’s facilitator is Josephine Tordaro, and she’s very helpful! She has taught me so much about how to handle life now.

This group has been meeting the second Monday of each month, from 3:30 to 5:00 p.m. We all have different stories to tell, and even though the group’s title is “TBI” (Traumatic Brain Injury), I am fully included in all discussions. As a matter of fact, it was facilitator Josephine who was the first person who correctly told me my actual label, “ABI,” for “Acquired Brain Injury.” I had been to several doctor appointments but had never heard that before. I scribble notes wherever I go, so when I heard that one, I wrote it down and brought it to my very next neurologist appointment. Luckily, I see this doctor every 3-4 months, so I didn’t have to wait too long to hear if Josephine was correct. She was. This group is where I learned that brain injuries are the “silent, hidden epidemic.”

According to the May Institute (mayinstitute.org), “Acquired brain injury refers to a traumatic or non-traumatic brain injury that occurs after birth. Traumatic brain injury (TBI) is caused by an external force. Non-traumatic brain injury occurs as a result of disease or illness.”

At Josephine’s group I’ve heard a great many stories about how others handle their brain injuries. What was so shocking to me when I first attended was how smart, capable, and knowledgeable these people have been. The jobs they held were impressive!

Without sharing private information here, suffice it to say that these people have HUGE adjustments to make from the lives they once had to the lives they have been given now. I am NOT the only person who struggles with this adjustment. It’s like: once someone worked for NASA and now must work on personal behavior.

One of the many things I learned was about 3D glasses and brain injury. At one of Josephine’s meetings I attended when I first joined, she asked us to go around and say what we had done as far as celebrating the recent Fourth of July holiday. The usual things were listed, such as parades, barbecues and fireworks.

But, when I told the group that I had bought these new 3D glasses to watch the fireworks along with Aiden, Josephine interrupted me and asked the group what I just said that I shouldn’t have. As usual, I assumed I had inadvertently been rude to someone. Turns out – the group knew something I didn’t: 3D glasses can cause a seizure with someone who has had a brain injury. I hadn’t heard that before. As always, I checked with my neurologist, and I found that it is true. Luckily, I was fine that fun fireworks night at Cantine Field in Saugerties, NY. But, I gave those 3D glasses away so that I wouldn’t risk a problem in the future, because I also learned that it could happen years down the road after the injury.

And – I shared all this info with “my” movie theatre – the Lyceum in Red Hook, NY. You can never be too careful! I have to say that I do miss going to 3D movies now.

I also learned from Josephine that summer heat can be dangerous for the brain-injured. She always reminds us to say indoors, with AC if possible, and to drink lots of water to stay hydrated.

There are many other things I learned from this group and from the other groups I’m going to discuss next. In the next chapter, I will give a long list of things I have learned about how to deal with others who have had brain injuries.

Another group I attend is held at the Albany Medical Center in Albany, NY. This group is for people who either now have or once had a brain tumor. This group has been meeting the first Monday of the month from 5:30-7:00 p.m. Of these three groups, this one is the one I attend the least often, only because I belong to the Dutchess County Scottish Society [DCSS], which happens to meet at the same time. So – each month I alternate between going north from my home to the brain tumor group or going south to the DCSS meeting.

The group in Albany has changed quite a bit since the time I first joined them. Our facilitator then had quite a large turn-out of people who met there. I really enjoyed attending these meetings back then, not only for the delicious snacks we all brought, but because it was very interesting to learn from stories told by others about brain tumors that were removed but then grew back.

Having my tumor grow back is one of my biggest fears. I was told there is an 80% chance it will not grow back, but, of course, as I can be too negative, I focus on the 20% chance that it will….

This group has changed since it now has a new group leader. The attendance has decreased for various reasons. Once, Aiden and I attended and we were the only people there! Dana, our new leader, writes very helpful emails about things to think about, ponder, absorb. I am sad about the members who have since passed away due to the returning of their tumors. Rest in peace, Mark and the others.

One thing that upsets me sometimes when I attend the Albany Med. brain tumor support group meetings is survivor guilt. There are so many people whose brain tumors grow back, and so they don't live to tell their tale….

I feel guilty when I sit there and complain about how different my life is now. But, I still have a life, so who am I to gripe? Widows, widowers, and others attend, and I'm pretty sure they wish their loved ones were still around to moan and groan about how their lives have changed. Instead, these folks are polite and don't tell me to stop. But when I hear one more story of someone's tumor growing again, or worse yet, someone from our group has passed away, I feel so guilty that I survived.

I guess this is just one more example of how we all should enjoy each day, because we have no idea what's just around the corner. When I look at pictures from my life from long ago, I marvel at how much I took for granted, how much time I thought I had to teach, how much I thought I'd do. If I had known then what I know now, I would've enjoyed it all so much more.

         

I’ve included at the end of my book a Brain Tumor Vigil that is used every May at these meetings, since May is Brain Tumor Awareness Month.

Another group that I attended regularly is the Brain Injury Support Group at the Poughkeepsie, NY, Galleria Mall. These meetings were held the fourth Saturday of each month, in the Conference Room, near the food court, from 12:30-3:00 p.m. The facilitator’s name was Dr. Lois Tannenbaum, and she’s another group leader that I have so much respect for. I look up to her so much, I asked her to write the Foreword for this book. [Unfortunately, Lois had to retire early due to her own health issues. I hope this group continues, with the new facilitator, as well as it did when Lois was running it.]

Lois’s style of running a meeting was very similar to how I did it when I was in charge of a committee. She was full of hand-outs and black-and-white examples of how to handle the huge changes in your life.

I listened to many stories from others who attended, and it was mind-boggling to hear them tell of their enormous losses. Some of the people who attended are very upbeat. Some had a difficult time expressing themselves. And, there are some, like me, who were quite agitated by this new life. One person there called herself a “Mess in Motion.” That’s true for me too.

When I left these meetings each month, I prayed that I could become happier, as a few of the attendees were. I talked to God, while Aiden and I walked to the car. Aiden drove me to most meetings and doctor appointments that were not close by, because I get agitated when I become lost, confused, or late. Doctors still want me to drive one hour or less when I’m by myself.

On the rides home from this meeting, I usually kept quiet – very unusual for me – so I can absorb all that I heard and learned. Lois always had interesting topics and speakers who helped explain things.

One time we group members took a “test” about our negativity. I failed the test miserably, worse than any of the other group members. I thought long and hard about working on how negative I am. I’ve made some small improvements with that, but I am still working on it….

In the spring of 2015, I met actor Gary Busey at a conference in Albany, NY, about brain injury. He was the keynote speaker of the Brain Injury Association of New York States’s annual conference because of his helmet-less 1988 motorcycle accident and, thus, head injury.

As he was speaking, the lunch staff was serving our meals. The clanking of the metal covers to our plates was very loud. Many of us sitting there with our individual brain injuries were struggling to hear him on the microphone.

In true G. B. fashion, Gary let the staff know how annoying it was. Many of us laughed because he had the guts to say what we were thinking. I love that guy! He makes an intense subject (an altered brain) into something humorous!

Gary speaks his mind. Sometimes, it's TMI (Too Much Information), but that's par for the course for brain injury.

He also has enjoyable “Busey-isms.” Here are some of my favorites:

Never

Underestimate

The

Spirit

                                        

and

Finally

Understanding

Nothing

What's so much FUN to tell you here is that when he was done speaking, he asked if we had any questions. Of course, my hand shot right up and a microphone was handed to me, because we were in a huge room. I told him that I take notes for everything and I couldn't remember what he said FUN stood for.

Before I could finish my question, he interrupted me and asked, “Has anyone ever told you that you talk too fast?” Of course, everyone around me laughed hysterically because they all know me.

He went on to say, “You know, brain-injured people can't process language that fast.” This I knew, so I slowed my question down.

Later, we could have our pictures taken with him. I love that picture with him, Dr. Lois Tannenbaum, and me (see my photo section). Right after that, I lost my balance and stepped on his foot. So, he ended our time together with one more funny comment: “Boy, you talk fast and you step on others. I bet you're a piece of work to be around.”

He couldn't have said it any better! I love you, man – thanks for helping me enjoy my injured brain!

[And, to prove that there is life after a brain injury, I just read in the paper that Mr. Busey is about to star in an off-Broadway play. I hope I get to attend! Also, comedian Tracy Morgan is back on track with his life after his traumatic brain injury caused by a highway accident. Way to go, guys!]

One of the things that I get out of these support groups is that each of the attendees once had a life that is permanently gone now. We have to pick up the pieces and carry on. That is true for everyone, brain injury or not. None of us gets a life we once expected and/or actually had for a time. That was then; this is now. Dealing with that reality can be very difficult at times. Enjoying the moment is truly necessary in order to have a satisfying life. “Woulda” “coulda” “shoulda” are a waste of time and energy. Get the most out of the here and now.

Once, I met a woman who told me that after her husband's recent stroke, his behavior toward her changed dramatically. Before the stroke, he was always warm and loving. Since the stroke, she says that he sometimes “throws daggers at my heart” with the mean things he says. I told her she's a beautiful person for staying “in there” with his form of brain injury. I'm not positive, but I think I made her feel just a slight bit better when I said this is a common-type behavioral-change story for someone with an acquired brain injury, because she told me, “thank you” with tears in her eyes after I “filled her in.” [Unfortunately, the man I thought was my caregiver was not able to hang in there for me.]

So, to those of you who are also getting those “daggers” from someone you love who is brain-injured, hang in there and try to remember what you love about that person. Remember – the brain injury isn't ALL of that person. [Sadly, this was not the case for my boyfriend. He couldn’t “take it” anymore.]

One activity I learned about at Dr. Lois Tannenbaum’s support group was Vision Boards. She gave us construction paper and magazines to cut out sayings and/or pictures to make a Vision Board of what could help us through our daily struggles.

I cut out words, not pictures, and some of them I list here:    

     ·       Remember the moment. Forget the rest.

     ·       Time it right.

     ·       Wake up right.

     ·       I am….

Activities such as this helped me to enjoy our group, but also to recognize how far I've come in my own behaviors. Lois has also taught me so many vocabulary words that helped explain why I do the things I do. One example is the term “emotional dysregulation.” It means that some of us with brain injuries have a difficult time regulating our emotions.

Lois’s example for this was her “illustration” of a pressure cooker. Handlers have to be careful so the pot doesn't explode. Our caregivers need to be aware of this.

So, I need to make myself a priority so I can understand what triggers me, so I can “see” that pressure cooker getting ready to blow. Hopefully, this will happen more often so that I don’t “blow.”

Another term that I learned from Lois Tannenbaum's brain injury support group is “the amygdala hijack.”

What she taught us is that once someone who is brain-injured experiences this hijack, the amygdala (the emotional part of the brain) takes over the neocortex (which is where the thinking takes place), and therefore intelligence and reasoning “go out the window.” Working memory is lost and adrenaline is pumping. All of this can take 3 to 4 hours to clear up.

This is what happens to me way too often! I become so triggered by others' insensitive remarks, questions, and/or comments. So, I try to do what Lois taught us, which is to “freeze.” Instead of “fight or flight,” which can cause trouble or safety issues, “freeze” means just to be quiet, stand or sit still, breathe and bring yourself back to a healthier state of mind.

Since she taught our group that, I've used this technique several times: I didn't answer a snotty email to me until I “froze” and could write back without an attitude; I ignored rude customers in the store who were incorrect in what they were saying to each other about another person in line with us all; I just didn't respond at all to someone who said something sexually inappropriate to me when I was out walking my dog; I decided not to take it so personally when a usually-friendly store employee wasn't as pleasant as usual (probably because he was overwhelmed by the owner's changes there). Each time possible, if my feelings have been hurt, I lie down on my Yogibo. [A Yogibo is a fabulous beanbag-like piece of furniture that comes in all shapes, colors, and sizes. It's been my “resting place” many a time!]

I'm sure they'll be tons more “freeze examples” as I compile this book, but I need to finish it up….

So, to wrap up this chapter, I’ll list some more things that I learned from Lois:

·       March is Brain Injury Awareness Month

·       RED (Reactive Emotional Disorder). [I “see red” many times each day as I react to others' actions.]

·       Anger meltdowns are hurting my: arteries, digestive system, immune system, and causing headaches and more.

·       Seizures can BEGIN 10 years (or more) after a brain injury. [I've heard actual stories like this from others, but it needed to be heard again.]

·       Depression can happen with a brain injury. [Luckily, I'm not sad that much. Anger is my “forte.”]

·       Excessive laughter can take place after a brain injury. [Again, this doesn't usually apply to me, but I've witnessed more than one caregiver need to remove a brain-injured person from a social setting due to this behavior.]

I've added a section at the end of my book with helpful handouts I received at support groups.

I so appreciate the work Lois Tannenbaum did for those of us who learn best by reading it, not just by listening to it being presented. I re-read many of these handouts to remember something I need to improve at.

I highly recommend you join a good support group near you if brain injury is part of your life. These groups not only help make sense of it all, but you get to be around others with similar experiences.

A hand-out I once received at one of these groups was written by another survivor of brain injury. Her name is Barbara Webster. She’s from Massachusetts, and she’s written for Brainline.org as well as her own book about her story. Many quotes from this article were helpful. I’m sure her book (Lost and Found: A Survivor’s Guide for Reconstructing Life after a Brain Injury) will be a valuable read for me when I’m done here.

That excellent website is to help you understand brain injury better. My favorite entry, by another author, was this one, titled “9 Things NOT to Say to Someone with a Brain Injury,” but I’ve listed only the 6 of the 9 that apply to me:

·       “You seem fine to me.”

·       “You’re such a grump!”

·       “How many times do I have to tell you?”

·       “Do you have any idea how much I do for you?”

·       “Try to think positively.” [Easier said than done with a brain injury that causes rumination (repetitive negative thinking).]

·       “You’re lucky to be alive.”

So – I try each day to be “Teflon” versus “Velcro,” as I’ve heard at these various meetings. Some days are “stickier” than others….

For the coming year, I [Douglas Winslow Cooper] will be

excerpting, weekly, material from this fine book by Janet Johnson Schliff, M.S. Ed., whicch she wrote over a three-year period with some coaching and editing help from me, through my business, Write Your Book with Me.

Her memoir is now available in paperback and ebook formats from Outskirts Press  and amazon.com: 

What Ever Happened to My White Picket Fence? My Brain Injury from My Massive Brain Tumor

                                              ###

BOOK TALKS AND SIGNINGS

Janet Johnson Schliff was on WKNY  Radio 1490 at 9:10 a.m. on Thursday, March 1, Kingston, NY.

Janet spoke at 1 p.m. on Saturday, March 3 at Barnes & Noble in Kingston, NY. I [DWC] attended, along with about 40 other people. Congratulations to Janet on a fine talk!

Janet Johnson Schliff spoke at the Starr Library in Rhinebeck, NY, at 7 p.m. on March 6. 

She spoke at the Golden Notebook Bookstore in Woodstock, NY, at 2 p.m. on March 17. 

She spoke at the Morton Library in Rhinecliff, NY, at 6:30 p.m. on March 28. 

She spoke at RCAL in Kingston, NY, at 4 p.m. on April 3. I was able to attend. They gave her an impromptu book-launch party.

On 4/4/18 Janet spoke at the Parkinson's Support Group at the Starr Library at Rhinebeck at 2:30 p.m.

On 4/27/18 Janet spoke at the Stone Ridge Library at 5:30 p.m.

On 5/4/18 Janet spoke at the Hurley Library at 6 p.m.

On 5/9/18 Janet spoke at the Kingston Library at 6 p.m.

On 5/14/18 Janet spoke at the Staatsburg Library at 7 p.m.

On 5/31/18 Janet spoke at the Clinton Community Library at 6:30 p.m.

On 6/9/18 Janet will be at the Tannersville Mountain Top Library at noon.

On 6/11/18 Janet will be at the Gardiner Library at 7 p.m.

On 6/20/18 Janet will be at the Marbletown Community Center at 6 p.m.

On 7/13/18 Janet will be at the Esopus Library at 7 p.m.

On 7/23/18 Janet will be at the Ulster Library at 5:30 p.m.

On 9/06/18 Janet will be at the Inquiring Minds Bookstore in New Paltz at 7 p.m.

More signings will be coming up. A fine feature about Janet by John DeSantos [845 LIFE] appeared in the Middletown Times Herald-Record on Monday, March 12, as part of Brain Injury Awareness Month. An article about her book was just published in the May 2018 Living Rhinebeck Magazine. An article about her book appeared in the May 14 Daily Freeman of Kingston, NY. and another in the Family Life section of the Poughkeepsie Journal on June 8th.