Elisa J. Transcript

Hi, my name is Elisa, and I’ve been dealing with persistent concussion symptoms for many, many years, and I wanted to share a little bit about my journey, and specifically three things that have made a positive impact on my concussion recovery. But before I get into those three things, I wanted to give you a little context about what my life was like before my concussion happened. So I was in my 20s, I was in college, and I was your typical perfectionist, overachiever, doing a lot of things that filled my schedule. I was in a sorority. I was a part of other organizations, extremely social and very, very active. I loved dancing, so I was doing some sort of dancing every week, whether it was dance classes or going line dancing with friends. And I also loved hiking. So yeah, just very, very busy, active individual. 

So in the fall of 2016, after I graduated from college, I went on a mission trip to India, and I was having the time of my life, living your best life, as they like to say. I was helping out and serving others and just, yeah, sharing love and doing things that I had only dreamed of up until that point, and that’s where my concussion happened. I was sitting one day with friends, and I got hit with a tennis ball in my right temple and sustained whiplash.

I got a myriad of concussion symptoms almost right away, but I tried to stick it out, because I really loved what I was doing and didn’t want to leave my team or leave the work that I was doing, and I tried to stick it out for over a month, but eventually I decided that I had to come home to seek medical care, and what was supposed to be a year long trip turned out only two months for me, and I have never experienced a heartbreak as big as having to let go of of that, of that trip and that year of my Life. 

So when I got back to the States, I unfortunately followed some bad advice and ended up being in bed in a dark room for a while because I was told that that’s what you did. You rested until you felt better, and eventually you would feel better and continue on with life. But unfortunately, that just wasn’t the case for me. Those months, those months turned into years, and eventually,

my brain just wasn’t used to any sort of stimuli anymore, and I had to basically reintroduce everything, and I mean everything, like reintroduce light, reintroduce sound, just everything that comes with being a human.

And to make matters worse, I was in a lot of pain. I had migraine-like pain in my head, and it, it’s kind of hard to describe exactly what it felt like, but it was like my whole head was inflamed and painful, and it just never went away. And I like to describe myself as zombie Elisa at the time, because I just didn’t have any sort of personality. I think because I was in so much pain and my brain just wasn’t functioning properly. During that time, I felt extremely alone. Part of the reason was because I was literally in my room alone, but also because doctors didn’t know what was going on with me, and I wasn’t able to find comfort from the things that I normally felt comfort from, like my family or friends or my faith. 

So that was just a really, really dark time in my life. So now that you have a little bit of background on what I was like before the concussion and what I was like right after, I want to get into the three things that have made the most impact on my concussion journey. So those three things are education, proper care, and community. 

So for education, I did not learn what was going on with me until I decided to get back on Instagram. I had taken, I don’t know, a year or two year break from it, just because screens were so difficult for me, and I just kind of felt like I couldn’t get on there without feeling like more, more lonely and kind of jealous of other people’s lives and what they were accomplishing while I was just in bed or house bound. But I finally got on there, and I was told to look up this physical therapist who specialized in concussion and basically from her one account, I was able to connect with so many other concussion accounts and was able to basically diagnose myself with persistent concussion symptoms, because that was not something that the doctors I was working with mentioned or brought up, they thought that I was too far removed from the concussion that I got in India, and what I was dealing with was chronic migraines. So just having a name for what was going on with me was so incredible. And just knowing that I was, it wasn’t just me, that there was a whole community of people that also were struggling, that was just revelatory.

So with figuring out that persistent concussion symptoms were a thing, I was able to

just dive into more about what a concussion actually was and how it worked and how they were treated, and being able to understand that in order to treat them, you have to basically tackle underlying inflammation first with your– whether that’s like your hormones or your nutrition, your sleep, your autonomic nervous system, like all of all of those basic functions, needs to be taken care of first before you tackle any of the cognitive stuff, because you basically have to prime your body to retrain your brain. But one of the most important things that I learned was that full recovery was possible, and it didn’t matter at what point you received a concussion, like you could be three months out, or 10 years out, that your brain could recover. And that was just such incredible news. And very after, I was able to educate myself more on concussions and how they’re treated, I then was able to seek proper care, and this was from concussion, concussion literate professionals who really understood that concussions could have lasting impact, and a lot of this care was more active versus passive, meaning that I had to actually do some work, and someone wasn’t just doing something to my body.

And a lot of this care came from people. Sometimes regarded outside of Western medicine, who are chiropractors, and they practice functional neurology, which is something that I had never heard of up until this point, but along with making sure that I was getting the proper care for my body, I also had to get care for my emotional and spiritual health. So that’s where counseling came in, and it was super beneficial to be able to have that counselor or a therapist in the rehab or chronic condition sector, because the last thing you want to do is try to defend your conditions to your psychologist. So just having someone who understands that chronic conditions are a factor of life, and you’re not just depressed, um, can be very helpful.

So the last thing that I want to talk about that has been very impactful for my concussion journey

is community. So when I moved back with my parents after coming home from India, I didn’t really have any friends in like, in the city that they lived in, and it was hard to connect with people like my peers. I just felt like we didn’t have much in common. They, you know, were busy with their jobs, and they were getting married and having kids, and I was like, what do I do? I am

in bed, and the only thing I can do is maybe leave my house to go to this one thing, and then I’m back in bed. And it was also this weird dynamic where I didn’t want to always be talking about what was going on with me physically, because I didn’t want to seem like I was complaining. So it was just really hard to connect with other people. 

But as I mentioned previously, I was able to connect to a lot of people via Instagram from the accounts that I found, and that’s where I found community that really got me, and we’re just able to offer support to one another, and I know that a lot of people will argue that virtual community isn’t as good as in person community, but I really feel like community is for your emotional health and for your soul. So it really doesn’t matter where it comes from, and fortunately, there are organizations on Instagram and even individual groups that offer support groups and different like activity-based groups. And through those groups, I was able to find validation and validation that I basically couldn’t find anywhere else, because these people really understood my day to day life, and I didn’t have to defend myself to them or make myself seem healthy, or any of the things that I would normally have to do with in person relationships at the time, through these groups, we are able to support and celebrate each other, and I think that’s so important, and celebrate each other’s wins, which was just so amazing, because a lot of time in like, a lot of time in life, only big things are celebrated, you know, like when you get a promotion or, you know, you get engaged or whatever. But in these groups, we are able to celebrate the things that were going on in our lives, like we finally spent a day inside without wearing sunglasses, or we were able to walk our dog to the park and feel okay about it. These little things make up our lives. And it was just so cool to be able to celebrate with each other. 

And then I was also able to find faith-based groups where I was able to talk about the hard questions about like, Where is God in suffering or like, what do I do with the fact that I feel like I’m alone and God’s not here? So I really feel like there’s a group, which is nice, there’s a group for almost anything in the concussion space and broader in the chronic illness space and the disability space. And these groups can really be a life changer. And the groups don’t always have to be about like going deep and sharing emotions. They can be like fun and light, and silly. So it’s, you know, it’s whatever you make it.

So those are the three things that I wanted to share today, the three things that have made a positive impact on my concussion recovery, which have been education, proper care and community. 

And before I sign off, I wanted to just talk a little bit about where I am now. So I am not 100% recovered, but I’ve come so far since those years that I spent in my dark room. I still have flare-ups and setbacks, but I’m not experiencing debilitating pain anymore, and I’m so grateful for that. I have a little job that I work a couple of hours a week at and get paid for, which is new this year, and I’m so excited about that. I’m in a choir at my church, and when I’m not singing, on the weekends, I’m volunteering and taking care of babies in the nursery. I’m able to take solo plane trips and visit friends, I go out, and basically, I have a life again. So I wanted to let you know that if you’re listening to this and you’re feeling overwhelmed or frustrated or stuck in whatever phase in your recovery, please don’t give up, and please don’t lose hope. Recovery is possible, even if it doesn’t seem like it. And I wish healing was linear, but it’s just not.

So, yes, just don’t lose hope. And yeah, thank you so much concussion box for letting me share my story.