It’s a small town. Small enough so that I might have heard a person’s name, and perhaps a little bit about them, but I might not ever have met them in person. Or if so, maybe just in passing. This was the case for Chris Botka. I knew his name as a real estate agent for Noyes, but also as the man behind Maine Mountain Maple syrup.  

However, just recently I found out that for the last several months, Chris Botka has been coordinating a Brain Injury Support Group on the first Saturday of every month in the lower level of the Rangeley Health and Wellness (RHW) building. 

It’s not a topic I am familiar with but as March is Brain Injury Awareness month, it seemed like a good time to assist in getting the word out. 

So besides planning on going to sit in on one of his groups, I spoke to Sarah Gaffney, Program Coordinator for Maine’s Chapter of the Brain Injury Association of America. 

Gaffney, “The Brain Injury Association here in Maine technically only runs two brain injury support groups. I co-facilitate a statewide group and then I facilitate a statewide caregiver support group. What we try to do is provide support and resources for all of the brain Injury support group leaders across the state because there are 22 brain injury support groups across Maine and a lot of them are facilitated by volunteers like Chris. They’re usually survivors or family members who see the benefit of a group and decide they want to start one in their community. We try to act as a connector and try to support these leaders as they’re starting groups, managing groups, and trying to get guest speakers.” 

Like the people she helps to connect, many years ago, she too found herself in an unexpected and very difficult situation. 

“I actually came to brain injury (support) in a very roundabout way. I used to work in conservation and trail work and then my first husband was diagnosed with a terminal brain tumor when he was 27. So, I was his caregiver for the next almost five years and after he passed away is when I pulled a 180 with my career and they were just getting the brain injury association here in Maine started. There really wasn’t anything for resources when he and I were going through it.” 

This month it will be nine years since she helped get the Maine Chapter up and running. 

When I thought about it, I realized nine years isn’t very long. The more I listened, the more I realized how important support groups are and wished there had been one for her and her family when she needed it. I expressed how valuable I think support groups are. 

Gaffney took it further, “Just being in a room with people who get it and who understand what you’re going through can be so helpful. Brain injury can be so isolating for survivors, but also for caregivers, and so being able to just connect with others who, no questions asked, they get it. They’re not judging. They’re not questioning why you’re there. They’re just there to offer support and connect. That’s really powerful for a lot of people, and it really battles isolation and hopelessness that can come after an injury.” 

I confided to Gaffney that I have been very ignorant of the kinds of issues brain injury survivors face. It’s just not something that is on my radar. She explained that this is common, and this is why brain injury awareness is so important.  

For one thing, someone who may be struggling with a brain injury is hard to recognize. I recalled how I had trouble with a co-worker once and later found out that he had a brain injury which may have explained his behavior. 

Gaffney, “Well, one of the biggest challenges is that for the most part, brain injuries are invisible. There are a few folks who will have a large scar or some other kind of obvious, outside, physical indication of their injury, but for the most part, it’s totally invisible.” 

Further, she explained, if you don’t know, the symptoms people experience can come off as changes in personality, or they might have unexplainable cognitive challenges. She gave some examples. Such as it might take them longer to process what people are saying to them. They might struggle with executive functioning. They might struggle with being places on time or remembering that they have appointments or were supposed to meet you for coffee. So basically, unless someone comes right out and says, ‘I have a brain injury’, it can be easy to fall victim to all kinds of assumptions. 

Not only may the symptoms present differently, but how one can acquire a brain injury and what to expect when one is diagnosed with one, also varies. 

Gaffney, “That’s one of the things from our perspective that we’re constantly working on is a lot of people think about brain injury in terms of maybe football or car accidents or sort of more obvious injuries like that. But there’s also strokes, overdoses can cause a brain injury from depriving the brain of oxygen. Cardiac event- same thing. Brain tumors, different disease processes, COVID-19. There’s a lot of different ways that people can acquire a brain injury and it’s incredibly varied, but a lot of the symptoms and a lot of the long-term effects are very similar.” 

She gave an example of what is commonly thought of as a minor injury such as a concussion.  

“I know people who still have concussion symptoms 20 plus years out. And there are other people, who those same symptoms will resolve within a few months. There’s really very little way of predicting what that outcome is going to be. 

Gaffney explained that the support group can offer help every step of the way, even if you don’t know how many steps it will take. Unlike a broken bone with a predictable recovery timeline, a brain injury is unknowable. Think how difficult it is not to know. 

 “One of the most challenging things with brain injury is that every brain injury is different. We have a saying in the field that if you’ve seen one brain injury, you’ve seen one brain injury. And so unfortunately, that’s one of the more frustrating aspects of it too, is that it can be very hard to predict what recovery is going to be.” 

I wound up going to sit in on the March support group at RHW and came to find out that while Botka started the group in Rangeley, Cindy Dawson, speech therapist at Rumford Hospital, is the one who leads the group. 

Unfortunately, Dawson wasn’t able to be there that day, so Botka facilitated. The brain injury did not inhibit that, but he offered some insight into what he does struggle with. 

“Like for mine, I can’t talk really, not like normal people will. That’s what mine is. But when I have to go to rehab, I can do everything. I can drive and everything, but I can’t talk.” 

He and members of the group are finding the much-needed support with others going through these types of challenges. 

Botka informed me that the formation of the group also helps people who are unable to attend the group in person.  

“There’s a lot of people in the Rangeley area who don’t go, but they read the emails.” 

Apparently, after each group, which has various guest speakers from different organizations, an email is sent out sharing updates and new resource information. 

For example, he has had members from law enforcement and border patrol come as guest speakers. I was curious what came of it and he explained that his group informed the individuals of some of their challenges. He offered the scenario of a survivor of brain injury who is dealing with slurred speech being pulled over at a border crossing only to be treated as someone who is under the influence of alcohol. 

Botka, “Like, say if they have a a accident or they stop the vehicle. When they come up and talk to me and guy says, ‘You’ve been drinking’, and I said ‘No’, and they said ‘Well yes you are.”  

This is definitely something that completely hadn’t occurred to me and I remember having a conversation with someone and indeed thought they were drunk, only to find out later the person had recently had a stroke. 

Fortunately, from that discussion with law enforcement came some relief in that members were given a card from the Department of Transportation explaining that the person holding the card has a brain injury. The words on the card helped law enforcement understand the situation more fully.  

Botka also explained that in the same way, the written word could help him. For example, sometimes seeing the words in writing or in an email is all it takes to give him a couple of extra moments to process. He reiterated that each case is unique. 

“It’s different with everybody. So a person comes (to the support group) and they can’t walk and have a cane or whatever, but they can talk. They can do. And like me, I can’t talk, but I still do real estate for Noyes and I do my Maple syrup business, Maine Mountain Maple, and all that stuff, but I can’t, I just can’t talk.” 

It’s true his speech is halting. The quotes I have written have been adjusted for that, but with patience he can certainly be understood and from what he tells me, he seems to be improving. 

He shared. “But you know Cindy’s (Dawson) doing a lot of work with me, so I can talk and it’s working.” 

Botka said that after his brain injury the doctors initially said he would not be able to talk. Being who he is, he could not accept that. Now, every six months the doctor exclaims how his speech is improving. 

It can be frustrating when he is doing real estate. People had complained he talked slow and wanted to deal with someone else. However, he then explains to them how he has suffered a stroke. At times people have responded that they can relate because of a relative who has undergone a similar experience. Fortunately, for some, this is enough to proceed in good faith. 

“And we’ll do the real estate. And they’re all very good”, Botka said happily. 

In a short time, I wound up learning a lot about a topic that I’ll be honest I didn’t want to know about. I’m the kind of person who shies away from sad or uncomfortable conversations. One (or two) might call me overly sensitive. 

When talking with Gaffney, not surprisingly my mind started to wander in worry. What about that concussion my relative had in grade school? What about others I care about who have had strokes? 

Gaffney empathized with my worry. “Yeah, absolutely. There are a lot of folks who don’t get a diagnosis until years later or months later.” She added, “We’re seeing that a lot with the opioid epidemic too as a lot of people are surviving. They’re having overdoses, and they’re surviving, but they’re not necessarily aware that they might have a brain injury and that’s why they’re struggling more than they were before. That’s why they’re having trouble with some of those cognitive pieces when that very well may be what’s happening. So that awareness piece is huge- that people are not alone. I think that’s one of the really important things.” 

Gaffney encouraged anyone who is any way affected by brain injury to consider taking advantage of the various resources. “If someone thinks they might have a brain injury or if they know they have a brain injury and they’ve been feeling isolated, whether it’s, calling the help lines, finding out if there are resources available, or whether it’s trying out a local support group. There’s lots out there to kind of come out of isolation and to help people connect with support. It looks a lot different than it did, you know, 10-12 years ago when I was taking care of my husband. It’s a completely different landscape of resources and support and community that exists now. 

I told her I was surprised there had only been the short time of a decade for this type of support in Maine. I mean, ten years is not that long, but that I’m really glad to hear that with the help of people like Botka, the information for awareness, resources and support is getting out there. 

Gaffney, “It’s incredible what we now have here in Maine to offer folks. There’s a lot out there. But you know, when it happens, brain injuries are often so sudden you’re not expecting them. Your family wasn’t expecting it and you’re thrown into it. And if people don’t know about brain injury and they don’t know what’s out there for support. And so all of a sudden, they’re trying to advocate for themselves and they’re trying to navigate this incredibly challenging post injury world. And so having support and being connected with resources is just…,’ she paused, “It can make all the difference.” 

I thought of Botka. I had spoken to him on both the phone and in person. He was still communicating very effectively, and I thought, any guy who does both real estate and has his own entrepreneurial maple syrup business has always had to be good at communication, and has to be, well, a hard worker. I believe he will make a difference. 

Rangeley Brain Injury Support Group takes place on the lower level of Rangeley Health & Wellness, 25 Dallas Hill Road on the first Saturday of every month from 10- 11am. For more information about this group you can email Chris Botka at chris_botka@yahoo.com or call 207 491-1612. 

For more information about support groups: 

Brain injury survivors and caregivers often feel isolated, and peer support groups are a great way to connect with others who truly understand what they are going through. In support groups, you can find a safe space to give and receive support, and share experiences, plus many groups often have opportunities to socialize or learn about brain injury topics and resources. Also, support groups are typically free and available almost immediately. 

Maine currently has 22 brain injury support groups across the state. For most groups, anyone with any type of injury (as well as family members, caregivers, and friends) are welcome to attend, but there are also a handful of specialized groups like ones for younger survivors, caregivers, stroke, brain tumors, and those impacted by aphasia. These groups are a mix of in-person, virtual, and hybrid, where you can attend either in-person or virtually. To get connected with a group, you can visit BIAA-ME’s Resources and Supports page for a full list of groups and schedules, and you can also call our Maine Brain Injury Information Center for assistance at 800-444-6443. 

March is Brain Injury Awareness Month, and the 2024 BIAA-ME Brain Injury Resource Fair is happening Thursday, March 21, 2024, 1-4 pm at the Augusta Armory. 

The goal of the fair is to get as many resources, services, and supports as possible from all over Maine in one place at one time for the Maine brain injury community to explore. The fair is totally FREE for attendees, and it is attended by survivors, family members, caregivers, professionals, students, and more from all over Maine. Online pre-registration is recommended, but you can also register at the door on the day of the event. Register here: www.biausa.org/maine24  

For any questions about Maine brain injury support groups or the BIAA-ME Brain Injury Resource Fair, please contact Sarah Gaffney at sgaffney@biausa.org or 207-522-6601. 

 

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