Allison M. Transcript

Hi there. I’m Allison, and I’m 57 years old. I am a concussion survivor, concussion activist, and because of my concussion, I’ve now become an artist. My concussion story begins as they all do, with an accident: When I was 49 years old, so that was eight years ago, I was skiing with my children on my home mountain in New Hampshire, a place I’ve skied all my life, and I’m a good skier. I was standing still as my little kids were going down the bunny slope, and somehow, magically and in some unknown way, I just slipped backwards, standing still. It was the first day in my entire life I’d ever worn a helmet skiing. Who knows what I hit, maybe a root, maybe a rock, maybe just ice, but I hit the back of my head and I got up, and I guess I skied the rest of this guest, the rest of the way down the hill. And being a mom, I didn’t want to wreck everybody’s day, so we kept skiing all afternoon, and my husband and I, when the lifts closed at four o’clock, we made a pact. I said, I think I have a concussion. He goes, Oh, let’s just, let’s see, it’s Sunday night. We gotta get the kids back. They’ve got homework. It’s Sunday night. They’ve gotta get ready for school. We gotta go pick up the dog. Okay, if I puke on the way down to Massachusetts, then we’ll go straight to the emergency room. And if I don’t, we won’t. This is old, old information. Everything I’m telling you today is a don’t. Everything I did, everything my doctors did for a number of years, was wrong. So please, everything you hear is wrong.

I am a concussion activist specifically because what happened to me in my concussion recovery should not happen to anybody. If you get a concussion, you go straight to the emergency room, you go straight the next day to your PCP, you go straight to getting into treatment. But I, being a self-employed mother, who worked from the home, slipped through every crack in the healthcare system that exists. I’m middle-aged. No one really cared. There was no team, there was no captain, there was no trainer, there was no Corporation needing me to get back to work. So what happened with me was, I got home that night, I didn’t puke, I got the kids off to school, and then I fell apart and, but it did also take a while for my symptoms to bloom, slowly over the time, that was a Sunday, and it wasn’t really until Wednesday that I noticed things were really wrong. Night light sensitivity, noise sensitivity, balance problems, headaches. We’ve had all the curtains down. The house became very dark, so I went into on Thursday my primary care, and I’m very tall, I’m 5’10 and she’s very small, and she had me walk across the room, and I nearly crushed her, because that’s when I discovered I had severe balance problems.

And back then,years ago, I was told to go home and rest, which is not correct. Nobody just goes home and rest. There’s protocols on how to heal from a concussion, and resting exclusively is not it. So again, everything I did was wrong, but I went home and did what my doctor told me to do many years ago, which was rest. So I had sunglasses, a hat, and my son’s Star Wars blanket. My kids were 11 and 13 at the time, and I listened to TV. I couldn’t work, couldn’t tolerate screens, couldn’t read, couldn’t write, and I’m an author; all I could do was get the kids up and out of school, out to school, make the lunches. And I was constantly screwing up the sandwiches. The girl got the wrong– the boys’ sandwich, and the boy got the girl’s sandwich for months and years because of my then blooming cognitive problems, the disordered thinking, the memory problems, the lack of focus I had, it was just really one of the hardest experiences I’ve ever had. So I kept on emailing the doctor with difficulty, because screens and concentration were difficult, and she kept on saying, rest, just rest. Again: don’t do this, get the protocol for healing. But I did what I was being told, and for months we lived in the total darkness in my home, which was, I now understand, very disturbing for my children and very disturbing for my husband, because I’m an active person, I’m an athlete, I’m very social. I exercise with ladies and groups. I have lots of friends. So for me to shut down completely and lie on the couch from the moment the kids walked out the door to the moment they walked in the house again was disturbing to us all. 

So this went on for eight months of living in the dark, until finally I demanded more care, and I was sent to physical therapy, and I was treated incorrectly for vertigo. So the saga continued. I did get mildly better. We went camping. It was better for my children to see me functioning. But I would say weird things like, Oh, guys, you’ve been so wonderful to me and so patient with me during these months. And I know I’ve been strange because, you know, and we’re making s’mores at the time, over the campfire with children in New Hampshire. You know, you’re used to a highly verbal Graham cracker. Obviously, I meant to say a highly verbal mother. So what did help my family was, because at night, as you all probably do, the brain is tired, and you get word salady, and you say weird things like that, and I said them constantly for years and years. What helped my family was me not falling apart in a puddle of tears, because it’s disturbing to say weird things, but what helped my family was for me to make fun of myself for me to make a joke about it, for all of us to laugh about it. Now, my older daughter told me that that really helped her, and it helped my husband. My younger son said to me years later, he said it helped, but it was really upsetting to me, because if you were okay, you wouldn’t say dumb things like that. So, it helps to make fun of it a lot, but there’s still the pain there. It doesn’t erase the oddness of who you’ve become or who you are. It’s not who you’ve become.

So I didn’t get my reading and writing back, but I felt better. I started functioning a little bit better. I could walk, I could go out, I could walk the dog. Life started coming back, and it just creeped back into a sense of relative normalcy in everything but reading and writing. So it was really, for two years, and again, I’m a writer. I’m an author that I couldn’t really read and write, and I was, again, not treated. I should have been treated, but I wasn’t. So again, if you have that problem, there are treatments. You go to get vision therapy, but none of this was offered to me. And part of the reason is that I’m the mom. I’m the one who pursues doctors in our family. I’m the one who finds the professionals. I’m the one who can be an extraordinarily charming nuisance to the scheduler. I’m the one who can get people into doctors’ offices pretty quickly. But I’m the one who had the brain injury. I’m the one who wasn’t functioning normally. So no one was doing that for me. And if you’re listening and you’re the one in your world that does that, I know you have a friend who’s like you. It may not be your spouse or partner, but you need to ask that person to be your Bulldog, to be your advocate in this healthcare world, because you can’t do it. And because I didn’t do it for myself, I languished for three and a half years without proper treatment because I didn’t have a me. You need to find the person who can be your Bulldog, a charming Bulldog, with the doctors.

So life started to get relatively normal. I was functioning more. I could tolerate more things. I could go to the baseball games of my sons because they were a quieter sport, but I still couldn’t tolerate basketball games with the bouncing and the cheering, and the indoors. My sunglasses were off. My hat was gone, but doing things like going through security at the airport, would destroy me. As soon as we would get through security to go on some family trip,I would be a puddle and crying in ladies room, and then passed out on exhaustion on the plane, wherever we were going, every vacation started with me as a wreck, because as a mother, you are putting the house to bed, you’re cleaning the fridge, you’re getting the dog settled, you’re packing yourself, you’re packing the children. You’re packing everything. You’re doing so many things as a mother that is so cognitively draining.

So life was difficult for years, and I eventually learned that, oh, I eventually had an experience where I was reading enough, and I was asked to be on a search committee for an organization I do a lot of work for, and I was reading long, long, long resumes, long, long, long resumes, and I read five or six on one day, and all of a sudden, every concussion symptom came back, even though I didn’t hit my head. And that terrified me. I thought at that point, oh, my God, I have early-onset Alzheimer’s. I have a brain tumor. Something really severe is happening that is again, not being treated. So I was healthy enough to bust down some doors, and I got myself into a neurologist at Mass General within a day and a half, I’m that good. And what the neurologist told me was, your brain’s fine. What? What the hell are you saying? Uh, my brain is so not fine. He said, your brain is structurally fine. Your brain is fine. What you do have are eye issues, vision issues, which causes the difficulty reading. Your eyes aren’t working together. So we’re going to get you vision therapy. You do have vestibular problems, and you do have cognitive problems that are causing you-you to have memory problems. So the cognitive problems can be fixed by going to a speech language pathologist.

So, there began the healing, three and a half years after my fall skiing. This was also not my first concussion. I flipped over the handlebars at age 14, and now know that I had light sensitivity because I remember that at middle school graduation, standing in the lights and being miserable. I had light sensitivity at 14, and if you have one concussion in your life, you are susceptible to getting more. So I had one at 14. I had the skiing event – skiing concussion at 49, and then at age 50, I was playing basketball with my son because I wanted to be a good mom. We were playing a game called knockout, which should have told me everything, and I got bonked in the head by a basketball. So if you’ve had concussions, you are just more susceptible for the rest of your life. Also, as women, we get more concussions than men do, because our necks are not as strong. We have more severe symptoms. We get a greater number of symptoms, and they last longer, and depending where you are in your menstrual cycle, that affects how bad your concussion is. So with three concussions and being a woman, I was kind of screwed.

That’s just my reality, but again, three and a half years into misery, I finally got proper care. And here’s the thing, when you get proper care, I was pretty much fixed up. Within four months, I went to the speech language pathologist and discovered that I did have memory, concentration focus problems. And within seven sessions, over the course of four months, I was pretty much back to normal. There are exercises you can do, things you can learn. I just had a few sessions of vestibular PT and discovered that I still had neck issues, which 100% of people who get concussions get whiplash. And three and a half years later, I was still suffering the effects of that whiplash. So with just for me, a little bit of the proper care. I was okay.

One thing this led me to do, one of my assignments, many, many assignments in speech language pathology, was to talk about my actual day. My speech language pathologist had me go through what I did from the moment my foot hit the floor, the moment in the, out of bed in the morning, to the moment I went to sleep. And as a mother who’s self employed, who’s running a household, who has children, we don’t appreciate what we do every day anyway, and we really don’t appreciate the cognitive demands of motherhood, the cognitive demands of, you know, figuring out which sandwich goes into which lunch box. That’s one, the cognitive demands of bringing the right kids mouth to the right dentist orthodontist. That’s a ton, making sure the dog has the right shots, organizing play dates and driving all the children in the car. Kids grow out of things. They need new cleats all the time, or they need stage makeup for the musical that they’re in. Or you’re just having an at home day, and doing three loads of laundry. Three loads of laundry as a-the cognitive drain is this, and this is what the SLP helped me figure out. Three loads of laundry go like this: You have to gather up all the items, that’s draining. You have to take them down the stairs and navigate the stairs, that’s draining. You have to put the clothes in the wash. You have to remember to put them in the dryer. Then you have to put the next set in and the next set in, so you’ve got three, then you have to bring all the clothes upstairs and dump them on the bed, and then you have the cognitive drain of separating out, however many peoples in your household, in my case, four people’s laundry from this massive pile. And then you have to fold them into organized piles. And then, because you’re a mom and you haven’t trained your kids yet to put their laundry away, then you have to put their separate laundry away and your own, but you let your husband do it. The cognitive drain of laundry on us is exhausting, and we have to appreciate that.

The other cognitive drain that is exhausting is groceries, and what my SLP had me do, which is the most brilliant thing ever. She had me go to my grocery because I’d spent years – and I know you listening to this, have spent years abandoning carts in the grocery because you get overwhelmed by the 50,000 items. You get overwhelmed by the lighting, you get overwhelmed by the choices. It’s, it’s just too much for you. So my SLP, had me go to the grocery and bring my daughter, and my daughter would just follow me on one trip. Walk into the market basket. I take a right. She notes what I grab in the order I grab it. First, I go to the butter, and then this – and then I go to the cheese. And she wrote down my cheese, and then I hit the juice. What we created that day was a document that I take – that follows my exact path in the grocery store, item by item. She then, she was 13 or 14, at this time she came home, she typed up my list. Aisle one, you get the butter and cheese. Aisle six, you get the whatever. And over the years, I have honed this list. I still use it. I still use this list, and I am still following the same track. And it is such a cognitive release. I don’t think about the groceries. I don’t get stressed about them anymore. It has changed everything, and I recommend it for everybody. And then everyone can add their own things to the grocery list in the proper aisle. It’s just easy. 

So, motherhood with a concussion is so demanding and so difficult, and I would meet people in my-the various support groups that I went to. And this is, I also highly recommend getting into support groups. You need to have concussion buddies. It’s the only way through this. You’re the only people who get each other, because in your small town, or if you’re like me, you won’t have concussion buddies. No one gets it. You’re a freak, you’re a weirdo. You feel like a freak or a weirdo. But there are people out there who are living this difficult life, and you need to find them, and they’re in concussion support groups. I would go to concussion support groups, and they were great. They were so great to finally hear other stories, to finally feel, learn other tips of getting through, to find, think of other, learn, of other treatment possibilities. But what I noticed is that at the end of a one-hour support group, most people would say, Oh, God, this was so great. I’m so exhausted. I’m going to spend the next- I’m just going to, I’m going to take a nap now.

And the mother, if there was a mother in the group, she and I would look at each other, oh, no, no. This is when our day begins. There are no naps after group for moms, which is when I realized I needed a support group for concussed mothers. So a friend of mine who runs groups, led one for us, and she did it for a little while, but then she had a relapse, and she put it into my lap, and I did my best to do it, but the, all the zoom and the emails, and I just wasn’t cognitively in a place where I could do this two years ago. So I asked Concussion Legacy Foundation if they could take over the back end, and they have.

The concussed mom support group meets the first Thursdays at 1pm Eastern. We have had over 350 visitors in the two years, we average 15 or 20 moms a month from Belgium to Oakland, California. Moms with women who are pregnant have come, moms with infants and babies who are learning how to do that, to a woman who has a 30-year-old, because she is still a mom. You’ll never not be a mom. So being among concussed moms is so important for support and the very specific challenges that concussed moms face, that’s my activism, is through the concussed moms. 

The other thing that my concussion has actually given me, in addition to meeting the amazing people that I meet on this journey, and you are one of them listening to this right now, the other thing that happened was my speech language pathologist asked me in my first first first meeting, what do you like to do that calms you down? I said, I like to bake. I like to bake for my kids. And she said, no, no, no, you’re going to be doing this five times a day. Oh, you can’t do that. Okay. Well, I said, I think I like art. I don’t know, I think I like like painting. So she said, well, do you have –go get a coloring book. And we had some. I have kids. We had an adult coloring book lying around. I want you to put it on your dining room table, and for 15 minutes a day, five times a day, I want you to just take water colors or markers, whatever you have, and fill in the little boxes. And what we’re doing here is, we’re calming your nervous system. We’re calming your nervous system with intentional focus, with calm, with peace, because the neurologist at Mass General I saw said you also have PTSD from those three years under the blanket. Your concussion symptoms tend to flare when you’re under emotional stress. That is PTSD, not concussion.

So we had to calm that nervous system that was causing all the fight or flight and the triggering all the symptoms out of nowhere. And so I turned to the coloring books five times a day, and I did that for about a month, and then I got bored, and so I started creating little watercolor flowers. And then I did that for about four months, and then Santa brought me some acrylic paints, which were bright and vibrant and exciting, and then I just kind of went crazy, and I started painting and painting and painting. That was four years ago, and I haven’t stopped.

I have, because of my concussion, I have learned, like I credit art, daily art, which I now do with helping my symptoms, helping my memory, cognition, my ability to learn, it is all come back my focus, because I started out with 15 minutes a day in a coloring book, And then I spent some time just fooling around with color, but eventually I started being cognitively organized enough, and eager to learn more. So I started taking classes online. And then the more classes I took online, I discovered this world of Instagram because I’m old, and I didn’t really think it was for me, but then I discovered all these other artists on Instagram, and then I discovered this concussion community on Instagram, and my world started coming together.

So, because of my concussion, I am now an artist. I have taken, I take classes, and I have learned how to do – I’ve now moved from watercolors to acrylics to now oils. I’m learning. I’ve spent the last year working on portraits, which is the most awful difficult thing, because you try to get the person to look like themselves. But the fact that I can try to take on portraits shows me how much I’ve healed. I credit my art with pushing my healing every single day. My Instagram is concussion recovery art. I named it that because when I was in my darkest of darkest of darkest days under the Star Wars blanket, I thought this was it. It was never going to change, but I was never going to get my brain back. I have gotten my brain back, and you can too. Is my life a little different than it was? Yeah, I am not as social. I am not loving huge places. I was invited to a like benefit luncheon in some loud room, and I learned last year I can’t ever go in that loud room again with 600 people, no matter how great the organization is. So I don’t do things like that.

 I don’t exercise with the ladies anymore. I do private training, which is quiet and there’s no music. I’m very specific who I spend time with. My brain is so precious to me. I don’t chit chat with people who drain me. I don’t let my heart, brain, soul have – I don’t give it away to people who are not worthy of my energy, because I get drained. People still drain me. Um, I’m very careful with my brain. I’m also very careful with my body. I – all the PT said, Oh, go ahead, you can go we can get you back to skiing. You know, I’m 57 years old. It’s okay. I don’t need to ski anymore. I’m sad I can’t ski. I’m sad my kids didn’t become skiers. I’m sad I can’t skate. I’m sad I can’t really enjoy New England winters anymore. But it’s not important enough to me to risk another fall.

So I live safely. I live safely in my body. I live safely in my brain. But my life is very rich, filled with good people, many of them concussion survivors. It’s filled with art and going through an experience like a severe concussion, by my values, because my brain is precious, and I can’t squander, squander my precious brain, my precious time on things that aren’t important to me.

So I thank you for your interest in my story. I wish you all the best, and I want you to keep going and get more concussion care. It is out there. There are people who can help you, who want to help you, and you will get to the other side. Big hugs to you all, and thank you for listening.