A Delayed Diagnosis with Stephanie Kurland
Show Notes:
Trying to find the ‘why’ of why you feel a certain way can lead you down a lot of different paths. Today’s guest Stephanie Kurland has been living with chronic pain for about 14 years due to childhood head injuries, four car wrecks, a trampoline accident, and 23 years of headbanging at heavy metal concerts, but she was only officially diagnosed with TBI and PCS two years ago. Her constant daily managing of symptoms has taken her on a long journey of self discovery. She’s dug deep and expressed her feelings through art therapy, Reiki, and years of research for creating a holistic lifestyle.
Today she joins us to share her story. She explains how her distrust of doctors led her to do her own research to get to the root of her anxiety and pain. She talks about the treatments and therapies she has tried from conventional physiotherapy to unconventional karaoke and expressing herself through art. Tune in to find out what Stephanie has learned on her journey and why she believes that you should connect with yourself, share your experiences, and be the ripple that starts the great change in the world!
Key Points From This Episode:
• Stephanie Kurland explains how she sustained multiple concussions throughout her life.
• How Stephanie’s distrust of doctors led her to do her own research to get to the root of her anxiety and pain.
• The treatments and therapies that Stephanie has tried, including karaoke.
• How art has helped Stephanie with her recovery.
• The adjustments Stephanie has made to her life to cope with her symptoms.
• How Stephanie has a hard time wearing hats and necklaces.
• How Stephanie’s symptoms led her to misdiagnose herself with hereditary anxiety.
• How most concussion survivors can clearly differentiate the before from the after but Stephanie is not sure how long she has been this way.
• Advice from Stephanie to connect with yourself, share your experiences, and be the ripple that starts the great change in the world.
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Transcript - Click to Read
[INTRODUCTION]
[0:00:05.3] BP: Hi, I’m your host Bella Paige and welcome to The Post Concussion Podcast. All about life after experiencing a concussion. Help us make the invisible injury become visible.
The Post-Concussion Podcast is strictly an information podcast about concussions and post-concussion syndrome. It does not provide nor substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition.
Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. The opinions expressed in this podcast are simply intended to spark discussion about concussion and post-concussion syndrome.
[0:01:03] BP: Welcome to today’s episode of The Post-Concussion Podcast with myself, Bella Paige, and today’s guest Stephanie Kurland.
Stephanie is a self-taught yogi of 20 years and is married to her high school sweetheart of 26 years. They home school their two kids and she works part-time as well.
Stephanie was diagnosed with mild TBI and PCS in 2019. Stephanie has been living with chronic pain for about 14 years due to childhood head injuries, four car wrecks, a trampoline accident, and 23 years of headbanging at heavy metal concerts.
Her constant daily managing of symptoms has taken her on a long journey of self-discovery. She dug deep in expressing her feelings with art therapy, reiki, and years of research for creating a holistic lifestyle. Her physical pain and anxiety has stood in the way of many opportunities and personal potential. Despite it all Stephanie is proud to share, she is enrolled in a yoga teacher training program, set to graduate in May of 2022.
[INTERVIEW]
[0:02:03] BP: Welcome to the show, Stephanie.
[0:02:04 ] SK: Thank you for having me.
[0:02:06] BP: To start, do you want to tell everyone a little bit about all the concussion injuries you have sustained?
[0:02:12] SK: Yes, I want to say listening to you speak my bio is hard to hear. I felt a little teary eyed “Oh my gosh”. I have been saying it for years but it sounds different when somebody else is saying it.
Aynway, I guess let us go back to whenever I was eight years old. I was on my brothers shoulders, he is a year and a half younger than me. In the house, on his shoulders just palying around, I fell off his shoulders and hit my head on the corner of the wall and my dad took me to get some stitches, to go get checked out. Nothing showed up as far as any sort of long term damage, they stitched me up and away I go.
The next one I was thirteen, me and my friend heard about this thing going on in the school yard and we decided to try it after school on the hill. That is where you lean over and take ten deep breaths and then you come up and then somebody, you hold your breath and come up and somebody squeezes you from behind. And she squeezed me really hard and I fell to the ground and I woke up holding my head and she was jumping up and down crying and saying “I thought you were dead, you were flopping around like a fish”, so that was some damage there. I had a seizure. I did not tell anybody, did not tell my parents I did not want to get in trouble. I just went home and I wrote it in my diary and I did not tell my mom until I was in my thirtees.
I guess, age sisteen to thirty-nine, I met my husband, my future husband whenever we were in highschool. He is a drummer and he is always playing in shows and on side projects. We have been very active in local music and going to concerts. I remember one time, I was at a show and the lead singer jumped off and he hit me in the face. I broke his landing, that was one. Another time I broke my nose whenever we were at a show and got rushed to the hospital and I also jacked my jaw then and that became, TMJ came of that.
What else? I had a car wreck between nineteen and twenty on the way to college. The airbag came out and I did not go to the ER, I did not do any follow up with the doctor. Another wreck and whenever I was in my twenties, my head hit the inside roof of the truck and I did go to the ER for that. I am assuming they did x-rays and they said “Well your brain is not bleeding so, follow up with your primary care physician”, and I never did.
I am still head banging, by the way. I did not go to the doctor for that. There is a wreck in my twenties and thirties where I slid off the road. I slid off the road on some gravel, I ended up in a farmers field. I went through their barb wire, cracked my windshield. No ER, no follow-up with a doctor.
I guess since I continue to walk away from these wrecks and walk away and wake up the next day from these shows that gave me terrible headaches and a very weak neck for a week after. I thought that they were just not serious, I was bouncing back.
Plus my going rate for staying at a job was between six to nine months. I did not acquire insurance that I would get to go to a doctor for them to hold my hand and get checked out.
I also had experiences with friends and neighbors who dealt with addiction, overdose, and death. I did not want to go down the medicine train of the suggestions with doctors. I did try a couple things, very short period of time with no help, no avail. Still headbanging.
At age fourty, I hit my head on some metal at work. I was working, I was not head-banging and I could not remember my employee number after that. The last time I went to a show and the last time I headbanged was at the state fair whenever I was age 39 and I am 42 now.
[0:06:24] BP: Well that is quite the combination of injuries and a variety of different words.
[0:06:29] SK: I know, I’m sorry. It is very exciting.
[0:06:33] BP: It happens, there is quite a few of us, there is just, everyone always asks my injuries and it is just, there is a list and they are all very different for sure.
One of my favorite things actually that you have mentioned when we talked before was when you were trying to actually get to the root of your problems. You kind of explained it like an onion. Do you want to explain that a little bit for everyone?
[0:06:56] SK: Yes. Since I was not going to a lot of doctors, I was not seeking out the advice of professionals. I guess kind of stubborn, trying to figure it out on my own. I went down a long path of why? If you ask yourself that question, with anything that you are thinking about or anything that is standing in your way, it becomes another question. Why? Why did this treatment or this therapy or this modality that I used today not work tomorrow? Why did it not work? Why was it working so well for a month and then a pain trigger or a stress trigger happened? I am seriously back to the beginning. Why? Why? Why?
My why was not on the surface. My why said “You have to go deep; you have to go what emotional stuff have you not worked through? What anger are you holding it on to? that is getting trapped and manifesting in this ease or discomfort and anxiety. What is literally blocking you? Blocking your potential?
[0:08:12] BP: For sure. I really liked the layers’ part. Like you are excited it was just like getting into the root of your anxiety and your pain and really finding out.
Like you said, “Why is all of this happening to me?” It is really common because a lot of people, you get injured when you are younger and nobody says anything. Nobody says “Oh, this might affect you years down the road”, nobody suggests that. You do not think about it when you start having problems or actually recognizing that maybe this is not normal. Maybe I should not be dealing with this.
[0:08:43] SK: They do suggest it, you are just stubborn. Like all of us can be and you just you do not learn it after the first or the second or the fiftieth time, you know?
[0:08:56] BP: For sure. What have you tried to help with your symptoms? What has worked?
[0:9:01] SK: To help or just have I tried?
[0:9:04] BP: Both.
[0:9:05] SK: I have gone to chiropractors, TMJ specialist to get the mouth guards. I do wear the mouth guards at night, every night to stabilize things. Physical therapy has helped out tremendously and I did not start doing that until the tail end of last year. I did six months somewhere and gained strength that I did not know I needed with being a yogi and strong and physically fit and athletic. That is not where my brain was going, my brain was not going “You’re not strong.” My brain was not going there.
I did try gabapentin for two days, that did not work. Tramadol for a month, that did not work. I lost a lot of weight with that. Essential oils, some herbal supplements, tea, meditation, reiki, tuning forks, karaoke is a good one. Karaoke, I mean that got me through quarantine, seriously. Me and my husband would karaoke box and we just jam on that. We were not going to shows anymore. We were not being around a lot of people and that gave is the common kind of feel that we were able to do.
[0:10:14] BP: Mental health is so important with all of this and little things like that can really help. Like you would mention you, sent me images of your art. A lot of us pick up hobbies or something. When we are struggling, like I like to write sometimes. When I am stressed I do work on puzzles, because I can turn my brain off and just work on the puzzle.
[0:10:35] SK: Wow! That is good that you can do that.
[0:10:36] BP: It just depends on what works for you. How has art helped you with your recovery?
[0:10:43] SK: Just being in the hardest and the darkest and the cycles where it stays of feeling the same. Where you cannot get a reset or months where you cannot get a reset. You are going to your toolbox so to speak, and you are going towards things that have helped before and they do not help and sometimes you cannot even find your toolbox.
Art for me, I wanted to visit this thing, this figure that was holding me back. I thought if I got creative with it with the meditation, I would just close my eyes and I would pretend that this figure was standing in my doorway and I was going to meet this figure, and what would this figure look like. Would it have a face? Would it have a texture? Would it have a color? Is it wearing any clothes? Once I met, I kind of discover how to meet my pain. It was so amazing meeting something that you feel has been holding you back. Stagnating you, stunting your growth and all that you have to offer.
Whenever I would meet the figure, whatever was holding me back in my imagination, I would draw it, after I would draw it I would hang it up. It was not something that I kept myself, it is one thing to talk about something. Interpreting your feelings and in artwork, it is different.
I remember one time; I had some artwork. Me and my daughter were butting heads quite a bit at that time and I did the artwork and I put it on the wall and she knew what we were going through at that time. She started crying because she was so upset that she felt that she had made me feel this way and that was not the case. I just needed to share what was going on inside and I would walk past it, give it high fives and I totally love seeing, giving something out that has been under wraps or hiding.
[0:12:48] BP: It is kind of like that unbottling feeling. Like when we talk about people bottle up a lot of their emotions and things, taking the cap off and everybody has a different way of doing that. Like you said, you do art, some people sing, some people read, some people crochet. I ride a dirt bike and do different things that help us alleviate a lot of that stress and feelings.
Some things we have talked about quite a few times on the show is how our lifestyles greatly affect the important of symptoms. Your husband is a drummer and noise sensitivity are a huge thing for concussion survivors. How have you adjusted to your life because of that?
[0:13:31] SK: I am still learning how to do that. Since I have only been diagnosed and found out the why, only two years ago in 2019. I am still trying to listen to that, I still go overboard, I still hit a wall every day. I quit going to shows. I cannot handle the large crowds; I cannot handle the small crowds.
A birthday party at my house. I think my husband thought that I just wanted to be selfish for years, and not want to have birthday parties for my kids. Granted their birthdays are both in the same month. Me and my husband’s anniversary, wedding anniversary is on the same month. Like it is a month of love in May. It is like crazy town in May and I am white knuckling it the whole month and I think he thought that I have just, I do not know, with my anger and irritability and annoyance, that chronic that I just did not want to have birthday parties for my kids. He is learning more. I do not make it up, it is hard for me to go to the store. I am an extremely social person, there are just things that I cannot control.
I quit drinking whisky, that is good. I did use alcohol to deal with or combat the overstimulation that I feel that time. I quit that three years ago. I wear sunglasses, I used to never wear sunglasses but it makes sense more. I am definitely more vocal to my friends and family about the challenges. People don’t know unless you tell them.
[0:14:59] BP: I love that, it is so true they do not. This is all invisible and is an adjustment for yourself and everyone else around you, especially when you start taking control and trying to manage things like your symptoms and all of that. That is just great advice toward that. We are just going to take a short break.
[BREAK]
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[INTERVIEW CONTINUED]
[0:16:02] BP: Welcome back to The Post Concussion Podcast with myself, Bella Paige and today’s guest, Stephanie Kurland. We often talked about wearing hats on this podcast. I lived in a hat for a quite few years because it was like my all-security net. It made my head feel safe, I keep sun off my eyes. There are a few things that it helped with.
You said your head is too sensitive for hats and I am sure that a lot of our listeners feel the same way. How do you handle that? Can you explain, how it feels when you wear a hat?
[0:16:34] SK: You said you lived in a hat. I would like to be able to live in a hat, if it works.
[0:16:39] BP: I did. Even too, I slept in one sometimes.
[0:16:42] SK: That is so cool.
[0:16:46] SK: I have a hard time wearing hats, I have a hard time wearing necklaces. There is quite a bit of clothing that I can not wear going to shoots. Going to shoot gun, you got to wear the big headphones and stuff and the loud surrounding noise in an indoor gun range is really, really hard. It is just all the symptoms come over. I have been dealing for this for so long untreated that the impression of pain is just really deep. Just like an over active nervous system.
I will know within five to ten minutes if I can wear some clothes. There is quite a bit of times, where I will put on an outfit, feel like rocking it and this is what I am going to wear. Totally what I am going to wear and I will be taking it off, I will be changing. I made quite a bit of gaudy jewelry. Big, chunky jewelry in my crafty days back then and I cannot wear those anymore. Every once in a while I will try it on and it will be a good day and I will not be taking it off on family functions. Sometimes I cannot do the sunglasses, cannot do the hats.
I will wear a hats for a little bit. The physical therapist said to try to reduce the sensitivity, wear it for an hour. Increase the duration of wearing it, I have not gotten there yet.
It may never go away. I do not know, but it’s cool.
[0:18:14]: It makes sense because like as our heads. My head is so sensitive, that I wore a hat to protect other people from touching my head. I had this barrier in my head that nobody could touch it. It also makes sense that it would create the opposite problem that your head is so sensitive. I do notice that my motocross helmet, I got a new one the other day. I have tried about thirty because the shape and the fit mattered so much to me because a little too tight in one spot, I will get the headache. Like certain hats, if they put pressure on certain parts of my head, I would not like it. Definitely there is a sensitivity there, it is just not as extreme as yours and I am sure other people as well.
Something that we talked about before and you said you discussed with your husband was a big thing in here in the show is; We talked bout how our lives had changed after our head injuries. For me it is becoming more and more difficult because that before part in my life is actually becoming a lot less than the after. Something that you have talked about, that there is really not a “before”. You do not remember, there was not a switch where all of sudden you could not remember and you had all these troubles, it was just a gradual process.
Do you want to talk about that a little bit?
[0:19:38] SK: This whole time, me seeking the “why” and even being in high school and a little before that, I just thought it was hereditary anxiety. I have family member that deal with panic disorder and anxiety and some are on medicine and some choose to use, drugs and alcohol to help with that.
I just summed it up to myself that. It is just hereditary and anxiety, this person in your family has it and this is what you have to deal with. That was one of the main reasons why I dug so deep and have stuck with yoga for so long is to try to combat all of that. I was trying to get to that picture, that yoga is in picture that everybody says, “If you do this and this and this and this, you are going to be this little baby buddha with this fat belly,” and. I could not find that, I could not get there. Granted I was continuing to injure myself the whole time when I was doing yoga and trying to lead a wholistic lifestyle.
I have been with my husband for twenty-six years. He says, I have always been this way. He was always finishing my sentences whenever I would get distracted. If kids would walk in the room, if there is TV going in the background, it is very hard to have a one on one conversation with other multiple things because the filter in your head is just not there anymore.
I have been always easily overwhelmed, easily frustrated, annoyed, irritated. He says, I’m like a light switch. I am never off; I am always dim or on. Although, he only remembers me complaining about the chronic headaches for the last fourteen, fifteen-ish years.
[0:21:27] BP: It is just different to talk about it this way. A lot of the time, we talked about it we compare before and after. It is a lot harder if you had a lot of head injuries. Like myself because there is a before but the before is when I was fourteen years old. That is becoming lot less of my life than I remember then after.
I think it is important to talk about because there are a lot of people that I talked to now that they find out that it was from things that they did as teenager and they have been dealing with this problems their whole life. You do not put those pieces together and our education system on concussions is also is significantly different now versus five years, versus ten, versus twenty. It is changing every single day and our awareness of it is changing every single day which is important.
Is there anything else you would like to add before we end todays episode?
[0:22:19] SK: I also want to add, I remember looking back and get picture of myself. Pictures of me at a friends’ wedding or a snap shot at a birthday party and stuff like that. I know, I do not like seeing pictures of myself because I can see in my eyes that something is not right. That I am trying to put on a face or I can see on my wedding day the fatigue and the headache. My daughter describes it as “Oh, I see that mom, your eyes looks stiff, you know, what I am saying? Your eyes looks stiff”.
[0:22:54] BP: My mom calls it my eyes go “dark”, she always says. My eyes, once I got help from the mental health stuff, she always said “your eyes are brighter, they were dark for a really, really long time” I really never noticed it but that what she calls it. She said “your eyes were dark, I always know you have a headache because your eyes were dark.” I do not recognize it but she recognizes it a lot better than I do.
[0:23:18] SK: I did not recognize that they were dark. I liked my daughter’s description. Nobody has ever pointed that out to me. It was nice to have somebody see something. It is not a band-aid. She said, “Your eyes look stiff”. I guess I was in denial about my injuries the whole time. I thought if I did yoga and ate right and address my emotional traumas, that would pave the way for the physical healing to occur. I was totally and blindly disconnected from this one important part of the equation: The longer that you ignore what you were supposed to do in life, the gifts that you are supposed to share that you are holding on to, the more life tries to get your attention so that you will share what you have learned to help those who are around you.
So my advice is to connect with yourself, share your experiences, and be the ripple that starts the great change in the world.
[0:24:09] BP: Thank you, that was really beautiful. I love it. Thank you so much for joining and sharing your story and all of your advice today.
[0:24:17] SK: Thank you so much.
[END OF INTERVIEW]
[0:24:22] BP: I just wanted to say thank you. The podcast is just over six months old and I could not be happier with the response. If you truly love the podcast, please consider leaving a tip in our “Support the Podcast” tip jar found at the bottom of our episode description. All tips are greatly appreciated and help cover costs of the show.
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[END]
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