Man oh Man. Ill never forget that day Cavin. The one thing Ill never, ever, ever forget is when we got word that you awoke from your coma. We were DJ'ing over at "Beauty bar", i cut the music off and yelled something of the sorts, "Yo the homie Cavin / Night Spitters that fell off the water tower just got out of the coma!!!". The bar ROOOOOOAAARRRRED in cheerful celebration. Everyone there was really stoked. I just got goose bumps writing that.

This is the one and only Jon Tronics, who is in my first chapter. I love you, man!

Wow, you are amazing. My question: How did your oldest friend betray you?

I bar tended for years and kept a stash of cash in a piece of furniture with a padlock. After several months in the hospital, I returned to my apartment to find that this piece of furniture was gone.

One or more of my friends had stolen from me, but I did not want to believe that my friends would do such a thing. As my brain fog lifted, it became clear and unavoidable. I questioned my friends and finally an admission was made.

From the post that I wrote about this: Moonshine Tears:

"I do not collect any money from him, but he sends me some every now and then. He has a desire to improve the person that he is and the relationship that he has with me. I am writing this because it is a part of my story that must be told. I am not writing this to embarrass my friends or family (and he is family and will always be part of my life), but to further heal in the actuality of our lives. This is why I am not mentioning his name. I do not want to make this extremely personal story a piece of his internet reputation that may effect future employment or anything of the sort. I would appreciate it if people could respect that and not harm him either. I have received his blessing in posting this piece because he understands that this is an important part of my story, but it scares the hell out of him. It is embarrassing. He is not proud of what he has done, but I am proud of him for how he has changed. I love him. We have managed to construct a little shack upon the shambles of our dilapidated friendship, and perhaps, one day, something stronger will be built; but I do not intend to work any harder than he does to do so."

Much respect To you for forgiving your friend. Objectively speaking, It's pretty shitty stealing from someone in a coma

That is very cool of you to say.

coma etiquette

I laughed out loud on that one! Thanks for posting it.

My brother was in a coma and unfortunately died. My question to you is... what was it like being in a coma? Did you dream? Could you hear people talking to you?

I am so sorry to hear that. I hope that you become a scientist, and we can talk about this further if you'd like.

Some people seem to have "seen the light," but I have absolutely no memory of the comas. That time has been completely erased in my memory. Maybe my hippocampus (seat of memory creation) was not functioning. :)

When my father was in a coma for two moths, he had some weird things. He can't remember vividly, but would occasionally be able to describe some of the crazy nightmares he was having for the two months. I can't even imagine being STUCK in them. He also said that in the haze after waking up, he would perceive things happening around him, but still have hallucinations and nightmares about them.

Was it anything like this post: Roid Rage

"I remember feeling like I was being held captive and that the deranged hospital staff was experimenting on me. I was convinced that they must be feeding me all sorts of strange psychoactive drugs to test my behavior. It felt like a bad trip on a hallucinogen. I HAD to escape. When I got my hands on my catheter I took a deep breath and embraced for the pain. I didn’t know how much it would hurt, I only knew how sensitive that area is. The pain that followed surpassed my expectations, but my adrenaline was racing because I was convinced that my survival depended on escaping. I felt like THEY had done something incredibly tortuous to me and I was appalled that THEY were making me do this. I took the pain and pulled it out slowly so that I wouldn’t tear my penis up. I still can’t believe that I was so confused and terrified that I pulled my catheter out! Ouch!!!

BTW: My penis is all good!

Why were you on the water tower?

Many people ask me this, Stone. The view of the manhattan city skyline from the highest point that you can find is spectacular. The detailed story is in my first chapter if you are interested.

No question, I just want to say that you remind me a lot of my Dad. He suffered a traumatic brain injury 6 years ago and still has lasting effects. I love him and respect him; and I respect you.

Thank you so much! That is golden right there!

Does your manhood work properly ?

I am VERY happy to report that it does indeed! Thanks for asking... Someone needed to! :p

After your accident, do you feel that people perceived or handled you differently as a person? I can't imagine how difficult it must have been trying to re-learn to use your body. Did you feel self-conscious in public? Was anyone offensive?

I was originally babied by people and would get mad and tell them that I want to be treated normal. I told my friends to not treat me differently or accommodate my difficulties because I wanted to live up to society rather than the other way around.

I currently go to school and do not tell the class that I have a brain injury so that I do not get babied or treated like a "retard." I do not tell people and, because I have overcome so much, most people do not seem to notice.

I was pretty self conscious about my uncoordinated movements and wonky gate, but I walked around my neighborhood obsessively to regain some coordination.

As a close friend of Cavin's (I'm not using my real name on Reddit), I always treated him the exact same way I always have for years and years, even though personally it was a bit strange/difficult/odd at first. I think it took about 15 minutes of talking with him once he was out of the hospital and walking (very slowly at the time) that I realized he was 100% there, but just not perfectly physically coordinated or had his voice "dialed in" or practiced yet.

Additionally, I do remember taking Cavin out to some of his first social events around Austin. Before Cavin arrived, I would compassionately tell my friends who I was with about his situation, and to not treat him lesser... that his wit and brain were still fine and to not be fooled by the external physical slowness. In these first few months, you'd see peoples' hesitations, until Cavin would come back with a sharp joke or remark and then they immediately "got it".

I could see many times he would get frustrated with the physical aspects of things and I can imagine this was extremely aggravating, going from one extreme to the other as Cavin was a fast-moving always-on-the-go person as well as a top-level martial arts expert years ago (something he doesn't like to brag about).

Since then, he's worked his ass off in physical therapy, often times several times a day and it is like night and day. And it has clearly paid off.

Today, if Cavin didn't tell you about his injury, you would have no idea.

All I can say is that I love the person above for doing what he did and preparing those who I "partied with." I was playing flip cup with water with people while walking and talking at the pace of a sloth!

Thanks for your reply. As someone who relates to a shift in social perception post diagnosis, I totally understand.

When it comes to brain health or neurological disorder, I feel like there's a lot of social stigma. It's almost as if people see you as less-than-whole, when in fact you're just having trouble moving or controlling yourself somehow.

What is whole? Is anyone really whole? We all have deficits, some visible and some invisible and the social stigma that I experience with brain injury, I almost expect. I love it when someone takes the time to talk to me about my condition and to understand it further. This is how social stigmas are broken down, and it is a beautiful thing!

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Well said. Cheers!

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I love you so much, Emily! You are the best and I can't wait to make it out to the West coast again!

Hey Calvin, your story is inspiring!

My question is this: after the recovery what was the first meal you had/ first words you said?

Good question.

The first meal was the first restaurant I saw after getting the OK to eat. It was AMAZING to me, but apparently no one else thought so because the restaurant is now closed. :)

After waking from my first coma, my first words were apparently "Get this sh** out of my mouth!" :)

More details on the restaurant and first meal! The cuisine, the location, what you ordered... Was it good/bad? Could you finish it? Want to hear this awesome story.

I love how much you recognize how important that moment was! As soon as I walked out of the doctors office after getting the OK to eat, there was a restaurant called Red Fish Blue Fish directly across from the hospital. From post: PEG Bored "There had been so much hype built up for my first meal, but when my mother and I walked out of Tamar’s office [who gave me the OK to eat!], I said “There’s a restaurant. That’s what I want.” It was a seafood restaurant and I had stuffed sole filet packed with crabmeat stuffing. It was delicious to me. Just about anything would have been. The restaurant closed the next month, but I was so happy that there was a restaurant there, but I didn’t care what it was. IT WAS FOOD!

Dr. Greenwald, my physiatrist (coordinator of all rehab care) while I was at Mount Sinai, had scheduled a gastroenterology (swallow, digestion, and elimination of food) appointment for me when I was discharged in July. Coincidentally and serendipitously, that appointment was scheduled for the same day!

After eating, my mother and I went to this appointment. When we walked into the office, the gastroenterologist was a petite girl who said something similar to what Tamar said “I’m not sure why you’re here.” My mom explained that I had just passed my barium swallow test and was cleared to swallow, so I no longer needed a PEG tube. The doctor checked my file, which did not reflect this yet. My mom made a call to Tamar’s office while we were still there and explained the situation to Tamar’s very helpful assistant, Kelly, who was aware that I had passed and entered it into the computer system right there.

The gastroenterologist saw it now, so she had the go ahead to remove the PEG tube. My mother and I thought that this would involve a surgery of some sort because a PEG tube is held in by a hard plastic balloon inside the stomach. The doctor said “lay down and pull your shirt up.” I did so with a puzzled look. I was in something like a reclining dentist chair. I asked if I could take a picture, and she waited for me to do so.

I’m not even exaggerating about what happened next:

The doctor grabbed the tube coming out of my stomach, wrapped it around her hand once or twice, put her foot on the reclining chair that I was lying in to brace herself, and said “Don’t move.” My puzzled look turned to fear and then agony as she tugged with all of her might. I began shrieking and I remember catching a glimpse of my mother with her hand covering her mouth, and an “oh my god” look in her eyes.

This agony continued for what felt like minutes, and then “pop”. The hard plastic balloon pulled through. It was so painful and intense! I was amazed and disgusted by what just happened. It was done with no anesthesia and was so crude and unbelievable to me. The hole began gushing blood immediately. She brought a gauze to me and placed it where the tube was and put a few pieces of medical tape over it. I no longer had a tube protruding from my belly. Just a bloody wound that would become my “second belly button.”

I had the worst stomach ache I had ever known for the rest of the day, but I ate like it didn’t hurt a bit. It was so cool that I could eat! Food’s kind of a big deal. We all eat… Well some of us have food poured into their stomach through a tube (hopefully temporarily), but still… We eat socially, we have family dinners, and we take each other on dates to restaurants. You can’t live without it, and you literally are what you eat. You are made up of cells that are created from nutrients from what you ingest. I could finally join the rest of the world and eat again. It was wonderful! The meals I would have would more than make up for the pain that I experienced that day."

See the pics: Before1, After1, After2

I think as a society we are always worried about what we might not know about brain injury. When people think about a "fate worse than death" and "pulling the plug" it's often prolonged comas and vegetative states they're thinking of. But it seems difficult to predict any one individual's prospects of recovery... or what awareness they might have when we assume they have none. Thanks for doing an AMA.

Thank you so much.

A saying that I have heard a lot since surrounding myself with brain injury is this: "If you have seen one brain injury... you have seen ONE brain injury." Brains are like fingerprints in the sense that no two brains are the same.

TBI is the invisible disability. Not all people with brain injury drool, wear diapers, and are completely dependent, but some are. Learning how to adapt to impairments is so important for a brain injury survivor.

It seems that one's brain health (and overall health) seems to be the best predictor of their prospect for recovery. Thank you so much for this comment.

Hey Cavin, I'm currently studying to be an occupational therapist and I was wondering what treatment, if any, you received from an OT during your recovery.

I love that you are an OTinTraining! I did A LOT of OT!

My wrist was in a position where it was as if my left fingers were trying to touch my left forearm. Try it. Custom braces were made for my wrist that would elevate it ever so slightly to battle the contracted muscle and signals sent from my brain to hold my wrist down. Bit by bit, I regained some movement in my wrist. It was really a brilliant method. Have you ever made custom braces?

Not yet, I'm only in my second year of school. I've gotten to play around with the material used to make them though and that stuff is too cool!!! Did you only see an OT for hand and wrist therapy or did they help you with anything else like toileting (don't have to answer if is TMI), dressing, or feeding yourself?

Definitely eating! My hand went everywhere! I still could use my right hand to wipe my butt, but I needed assistance to bathe. I used a shower chair and a nurse would scrub me. Eating was difficult for a long time: From "Drawing a Map"

"My left hand had a pretty severe tremor as well. I spilled countless glasses of water, juice, or soda, and several cups of coffee. We realized that I needed food cut for me after I attempted to cut a steak and ended up tossing it on the floor.

I still had to pee at least once every hour as well. I had no strength to even hold my bladder. I remember numerous times while being driven, I would demand either my mom or John to pull over so I didn’t pee my pants in the car. We kept a wide mouth plastic bottle in my mom’s car in case of emergencies, and I filled up a bottle while my mom was driving numerous times every week. We constantly were trying to get wide mouth beverages for this very reason."

Dressing was also an issue. I forgot all about doing therapy to re-train myself to put my clothes on. :)

Oops, I just saw your ball dribbling video, I'm assuming you worked on that with an OT. (If I'm wrong, please tell me, I'm just excited to learn more about my future profession, especially since I would like to work with clients who have sustained a brain injury) Did you play basketball before the incident or is it something that was developed with you and your care team to work on coordination?

I did not really play basketball. That was to try to get coordination back to my left hand and arm. It's still pretty much where it was in that video.

How aware were you of what was happening on the way down?

Did you have time to think "Oh shit" or anything else?

That is a question I have been trying to answer myself. Here is my best answer from the first chapter of my book:

"I wish that I could tell you what thoughts went through my mind as I dove towards the ground, just a short moment before these memories were replaced with complete darkness. Perhaps I was scared. Perhaps my life flashed before my eyes as I crashed from one steel beam to the next, and it must have hurt like hell. But the truth is, I do not remember a thing. In fact, I do not remember a single moment of this entire day. The most defining moment of my life has been wiped away, and I am only telling this part of the story based on information that has been relayed to me by others."

Hey bud, just want to send my well wishes. My brother was in a car accident 5 years ago that put him in a coma for 30ish days. He is currently struggling forward with a brain injury but is back in college. I love seeing anything that shows the severity and struggles of a TBI.

Wow! 30ish days is a long time. I can only imagine the nail biting that went with that ordeal. It is amazing how the brain is able to heal itself. Good luck to you and your brother. It is certainly a struggle.

Have you had any changes in your personality? Not just the changes brought on by the accident, but changes in personality b/c of damage. I'm not sure if this makes sense.

At first, many of my friends and family told me, "you have changed." I believe this is because I was in less control of my emotions. When something angered me, I used to be able to stop and think before lashing out, but I had lost my ability to control my temper.

You know that feeling you get where your "blood boils?" I would feel that when something pissed me off, and was unable to stop myself from becoming belligerent.

I have since gotten so much better at controlling my temper. It is what my mother would call "Buddhist monk training." I have gotten pretty good at letting things slide and accepting the things that I cannot change.

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Ha ha! Sort of... As I began to get better, my friends began to call me Mr. Bounce because I seemed to "bounce right back." It was not that easy though. It was not a bounce. More like a haul. :)

if you had never regained consciousness, or were left a vegetable, would you have gone down the euthanasia route? what's your views on that?

Wow! That's a hot button topic that is very difficult to answer. I believe that freedom of choice should include the freedom to choose to exit this existence. I think that forcing people to live in pain when they would much rather say their goodbyes is oppression.

I know someone who had a family member who's mind deteriorated to the point where he was rubbing his own feces on the walls, but, despite his wishes to be "let go," he was forced to continue to cause his loved ones pain and suffering, and to embarrass himself and to pile terrible moments onto his legacy.

That being said, if euthanasia were legal and accepted, I believe that it is INCREDIBLY IMPORTANT to have a TRUSTED medical power of attorney for situations like the one you described. Finding a trusted power of attorney is easier said than done, but someone would have to make that call, because a vegetable may be unable make life or death decisions.

These videos are amazing! What was it like after waking up from a coma? We're you very aware? Did you have recurring comas for any reason?

Thanks for sharing!

Thank you! I had two comas. When I woke up from the first coma, I could not walk or swallow and my hand and foot were tonus (stuck in a flexed position) and unusable. After developing breathing problems, I was put into an induced coma and given steroids, which temporarily reduced the swelling in my trachea.

I then woke up and was able to breathe again, but only for a few days when the swelling resurfaced, and I could no longer breathe. I had a tracheostomy performed, where I was breathing through a tube in my neck, but was then also unable to talk.

For 4 months I could not eat, walk, or talk, and my hand was unusable. I worked everyday to reclaim some normal abilities, and I still work everyday to maintain what I have regained.

I also had (have?) an acquired brain injury, and made a recovery (I don't want to say full recovery). Do you remember having a "Something is terribly wrong moment" after you regained consciousness?

I would say have. It's not like it goes away, and there is debate about whether neurons regenerate, but synapses can certainly be, and are constantly being, formed.

I absolutely had a "something is terribly wrong moment," but I don't remember it and had to look at medical reports and ask my mom about it. At one point after my first coma I was unable to breathe. You can hear how much difficulty I had in this video.

When it got really bad, I told my mother that something was very wrong. The hospital staff was pretty busy so they kept sending residents up to check on me. These residents were patting me on the shoulder, telling me that I just needed to calm down, and feeding me anti-anxiety drugs. The chief resident happened to go by my room and he took one look at me and had me intubated (put back on life support) and put into an induced coma. Read more about it in this post of mine.

Do you have any gaps in your memory?

Did anything really change behavioral wise between pre and post coma you? Still like the same food, etc.

Hi lurking, This is a reply that I made to chickenturd that may answer your question about memory.:

"I have no memory of an entire month of my life after my plummet. I have no memory of the day I fell. Those times have been replaced with complete darkness.

When my memories first began, a month later, they are very vague at best. I was in a brain fog for almost a year after, so I have clear memories of an unclear moment in time.

Today, I remember other times as well as most other people are able to remember. I am very lucky to not have trouble making new memories. Thanks for the question."

I like food even more! Love good food! When you haven't eaten anything conventionally for months, everything looks edible. One day in the hospital, my friend came in with "Beggin Strips" (dog treats) that he was bringing home to my dog. I tried so hard to get him to give me one!

This is a reply that I made to ShitiestOfTreeFrogs that may answer your question about changes in personality.:

"At first, many of my friends and family told me, 'you have changed.' I believe this is because I was in less control of my emotions. When something angered me, I used to be able to stop and think before lashing out, but I had lost my ability to control my temper. You know that feeling you get where your 'blood boils?' I would feel that when something pissed me off, and was unable to stop myself from becoming belligerent. I have since gotten so much better at controlling my temper. It is what my mother would call 'Buddhist monk training.' I have gotten pretty good at letting things slide and accepting the things that I cannot change."

Thanks for the Qs, and keep on lurking your ass off! Cheers!

How has the writing process been in the last year? Was it very difficult at the beginning? What kieeps you inspired?

Writing may have been the most activity that I have been doing since my brain injury. It was, and is, extremely therapeutic, and I have healed so much from putting a narrative to the trauma that I experienced.

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Thanks.

Speech Therapist here! Wondering if you had any speech therapy for the communication and/or the swallowing difficulties you mentioned? If so, what did you like about it? What didn't you like? Any recommendations for speech therapists working with people who have brain injuries? Also, thanks for doing this AMA! Not only does it raise awareness, but it opens a dialogue between patient and therapist that might not otherwise be possible!

I absolutely did and still do. I was diagnosed with dysarthria (slurred speech) and dysphagia(difficulty swallowing). I love speech therapy and still go. My swallowing difficulties force me to tuck my chin each time I swallow, but my dysarthria is hardly noticeable unless I am running on little sleep.

Because the purpose of speech is to communicate, speech therapy ties into communication in general. I like this! I get to work on my communication skills. I work with my therapist to not only prevent aspirating (inhaling a food food or liquid), but also to organize my thoughts and ideas.

I did not like being prohibited from swallowing. I hated being told that I did not pass the barium swallow test (swallow test that shows swallowing mechanisms because bolus of food is stained to be visible in x-ray). I'm sure you don't like telling anyone that they can't eat. My recommendation is to be careful, but not overly cautious. I hated one speech therapist because she wouldn't let me eat even though she did no assessment. This was insane. Here's the story of that mess: Tastes Like Bad Medicine

Dr. Tamar Kotz, MS CCC-SLP is the swallow doctor that told me that I could eat again, and I LOVE her to pieces! If you would like, check out the story about the day I got that news: PEG Bored.

It is really my pleasure to do this AMA. THANK YOU for participating. Please share the video so that we raise awareness even more by reaching an even larger audience!

I to want to know this, while in coma did you dream? Or was it just blank and you woke up after 12 days and what seems like you've been sleeping for 3 minutes? Was it trippy

Such an interesting question!

I woke in a fog, so it's hard to say, but I lean towards it being more like just being asleep... only more asleep than usual. Have you ever just dropped and slept like 12 hours or more? I suppose it was sort of like that. One strange thing is that, if your GCS score is above a certain number, you can respond meaningfully to commands (i.e. hold up two fingers, wiggle your toes if you can hear me etc).

During my comas, my mom told me over and over where I was, what happened and that we would get through this together. She sang to me too. She sang “Blackbird” by The Beatles, which was the first song that she taught me to play on guitar. Oddly, the first song I tried to play after my brain injury was “Blackbird” even though I had no memory of being in a coma, and even though I was in a coma during the time that she sang to me. See post: Musician's Friend

Your recovery is so amazing and inspiring. My question, what is your memory like of things prior to the fall? How is your memory functioning today?

I have no memory of an entire month of my life after my plummet. I have no memory of the day I fell. Those times have been replaced with complete darkness.

When my memories first began, a month later, they are very vague at best. I was in a brain fog for almost a year after, so I have clear memories of an unclear moment in time.

Today, I remember other times as well as most other people are able to remember. I am very lucky to not have trouble making new memories. Thanks for the question.

Hi Cavin! What changes, if any, did you make in your diet as part of your initial and continued rehabilitation? Do you still house a Mexican pie with Bleu cheese wing sauce?

I'll house a Mexican pie with Bleu cheese and wing sauce any day! I don't eat gluten because of molecular mimicry, which may cause autoimmune reactions in the body and/or brain. I love food, but, after not eating gluten, feeling an enormous amount of clarity, and then reintroducing it, the effects were so profound that I sincerely do not want to have it.

If you would like to hear more about gluten and molecular mimicry, I would be happy to say more. :)

Can you explain molecular mimicry in your words? Thanks!

Today's gluten is not the same as it used to be. Today's gluten is treated to create deamidated gliadin. This causes molecular mimicry in which, to put it simply, gluten messes with your brain's communication between itself and the rest of the body. Most people think that a bad response to gluten is only in the digestive system, but more and more research shows it's effects on the brain.

Gluten often causes an immune response in the body (and most gluten testing only tests for one of hundreds of the proteins in gluten). In the case of this immune response, the body looks at gluten as an invader and antibodies are made by the immune system to attack it. Because gluten is molecularly similar to the structure of certain body tissue, gluten seems to further "mimic," or adapt other traits of body cells, which means that the immune system does not know the difference between gluten (the invader it attempts to attack) and certain cells within the body.

Because of this, the immune system mistakes self tissue for invaders that are "to be destroyed," and attacks self tissue. It appears that, most commonly, this molecular mimicry is of brain cells, so this causes the immune system to attack the brain, which, in me, seemed to exacerbate my brain fog.

I hope that was understandable.

If you would like specifics on diet, see this post: Biology, Evolution, and the Brain

Your story is incredible. I just want to wish you luck in everything you do.

Thank you!

I don't really have a question, I just wanted to say thank you for sharing your story; also, keep it up, and I wish the best for you.

Thank you!

Hey Cavin,

Glad to hear you have recovered so well.

You mentioned that, after the accident, the moment you could wrap your wrist around a guitar, you did. When you got a substantial amount of motor control back, how was your muscle memory affected? Could you remember how to play the same songs at all/partially?

Were there other things that you found yourself able to do with ease, or that were surprisingly difficult?

Hello, As I answered for chickenturd about my memory: I have no memory of an entire month of my life after my plummet. I have no memory of the day I fell. Those times have been replaced with complete darkness. When my memories first began, they are very vague at best. I was in a brain fog for almost a year after, so I have clear memories of an unclear moment in time. Today, I remember other times as well as most other people. I am very luck to not have trouble making new memories. Thanks for the question.

I have terrible motor control, but I try to play anyway! I have ataxia which is a neurological condition in which my brain does not communicate well with my left extremities. This is due to damage of my cerebellum. I cannot play like I used to at all, but I can strum some chords. Hear my music!

I could remember what to play, but I could not translate my intentions to execution... Does that make sense? See this post if you want to read more about it: Musician's Friend

Cheers!:)

No question here, but that "After waking up." video was amazing. Feels were had, and I think it could potentially go somewhat viral.

Thank you, MartianMediam. Have you seen my kickstarter video yet? I'm told that it is quite a tearjerker.

What do you remember the most about the nurses, doctors, physiotherapists, & other support staff working in the hospital? What made the biggest difference for you? What sort of negative impact (if any) has been left upon you by medical professionals?

As a newly graduated nurse, I am curious about how I can make a meaningful impact in people's lives when they are going through traumatic situations.

First of all, your questions are admirable. I wish more nurses shared your curiosity and goals to make a meaningful impact. I remember certain nurses being fun, sweet, caring, and friendly, but I also remember being ignored and being treated as less than human by other nurses. When I couldn't talk, I would mouth words to communicate and all of the nurses would read my lips and be able to understand and communicate... Except for one. There was a nurse who would ask me a question and look elsewhere when I answered. She would then look at my friends with annoyed and seemingly hopeless eyes and ask them what I said. I would get so angry! Now, when I think about that nurse I feel bad for her, because she obviously did not enjoy her work, and felt as if everything was a pain for her. I don't think that nursing, or the medical profession in general, is for someone who does not possess the interest in helping people. But you clearly possess this.

While I was in a coma, the first CT scans did not show the extent of my brain injury, so the doctors saw no reason why I would not wake up. Apparently, a doctor was pounding on my chest in an attempt to wake me when my friend, Lyndsay, pointed out that I had cracked ribs. He apparently threw up his hands and dismissively said "fine, you wake him up!"

Despite the time that I spent with these nurses being the worst months of my life, the positive experiences that I had with my nurses meant so much at the time, and, in retrospect, mean even more today. A huge thank you goes out to Pinky (Josephina), Mara, and especially Joy Romanavich and Paulina for being incredibly sweet to me and my friends and family! They all made a huge difference in my life, and I hope that we stay in touch!

And thank you again, linzzzzz, and good luck!

Do you feel as though you posses the same personality as you did before your accident?

I do. This seems to be a very common question, and if you feel that I don't answer it to your satisfaction, let me know. This is my response to ShitiestOfTreeFrogs about personality changes. I hope that this answers your question. These are the only real changes that my mother has noticed as well... I believe that am still me.:

"At first, many of my friends and family told me, "you have changed." I believe this is because I was in less control of my emotions. When something angered me, I used to be able to stop and think before lashing out, but I had lost my ability to control my temper. You know that feeling you get where your "blood boils?" I would feel that when something pissed me off, and was unable to stop myself from becoming belligerent.

I have since gotten so much better at controlling my temper. It is what my mother would call "Buddhist monk training." I have gotten pretty good at letting things slide and accepting the things that I cannot change."

Cavin,

I know this is super late, so I don't really expect an answer, but my curiosity has the best of me here. How is your outlook on life? I know that I have a rescue dog that had been through a lot (parvo, coccidia, a hernia, pneumonia) and he has this incredible zest for life and outrageous happiness about him. I'm certain it's because he's just happy to be alive! Has this incident colored your world, so to speak?

Also, thanks for doing this AMA. It's super inspirational. Any tips for a new and aspiring guitarist? :)

Life is certainly a gift to be cherished! I felt that way before, but more so now! Music is one of the most incredible things that humans began doing! The more I learn about the brain and brain plasticity the more I feel like good musicians are brilliant because they have worked so hard to generate synapses in the brain to play so well.

Synaptogenesis is the forming of new connections within the brain. This takes time and rest. The best tips that I can give are to play everyday for only a few minutes. I play everyday for at least one minute. It's not about how long you practice each time as much as it is about that you practice each day.

I still do a chromatic scale up and down everyday at the very least. It takes only a few seconds. You would be amazed how much your brain develops the skill! Here's a quick video.

I am not at all the quick anymore, but I do it at my own pace everyday (and I only go to the 4th fret on the high E string before going back down because the ataxia that I experience makes it very difficult to move my arm AND my fingers to an accurate place on the neck). Do that everyday! See this post about musicianship and why it is incredible: Musician's Friend

*"Playing an instrument, you intuitively gain an understanding of how the brain learns. I truly believe that playing guitar prior to my accident was invaluable because it taught me perseverance and patience: useful tools in such an uncomfortable state of inability.

I hadn’t yet become fully appreciative of the fact that I could remember what to play, or developed a full understanding of the amazing things that were happening for me when I was in such need.

I had sustained shearing to my brain, which is very serious damage. The shearing was particularly to my corpus collosum which networks communication between the left and right hemispheres. I also had a hypoxic stroke which severely affected my cerebellum. The cerebellum is one of the main areas of the brain that orchestrates fine motor skills, and “muscle memory”. It showed the most symptoms of being damaged through my ataxia, my inability to walk, and how my left wrist and fingers were stuck in a bent position as if I was trying to touch my left forearm with my left fingers for months. After months of therapy and working on positioning my hand since the accident, I was finally able to wrap my hand around a guitar."*

Not sure if this question was asked, but what were your thoughts/emotions as you were plummeting, if any?

That is a question I have been trying to answer myself. Here is my best answer from the first chapter of my book:

"I wish that I could tell you what thoughts went through my mind as I dove towards the ground, just a short moment before these memories were replaced with complete darkness. Perhaps I was scared. Perhaps my life flashed before my eyes as I crashed from one steel beam to the next, and it must have hurt like hell. But the truth is, I do not remember a thing. In fact, I do not remember a single moment of this entire day. The most defining moment of my life has been wiped away, and I am only telling this part of the story based on information that has been relayed to me by others."

So, you couldn't walk, talk, or eat at first. How clearly were you thinking? Did it feel like talking was confusing, or were you perfectly sharp and just not able to get your body to do what your brain was telling it to?

I was completely in a fog for about a year. I was so unclear I could not even see that I was unclear. I didn't know what I didn't know. How can one tell it is raining when they are under water?

Talking was so difficult that I would give up. For almost a year, whenever someone would ask me a question or start a conversation with me, the first thing that went through my mind was “how can I end this conversation as soon as possible?”

This is from a post about regaining my voice: The Voice of Reason

"A brain injury survivor, whom I have recently befriended, put our shared experience the best when he said, 'it was like every word was a tongue twister.'

Speaking, for me, demonstrated the discombobulated and ineffective communication from my brain to my mouth… just like a tongue twister. If someone wants to say “Sally sells seashells by the sea shore," they know exactly what they are meaning to say. One can repeat a tongue twister over and over in their minds without a hitch, but without practice, when one tries to repeat this out loud over and over, the communication between the brain’s instructions and the mouth’s execution usually gets tripped up somewhere along the line. Just as my new friend put it, it felt as if this would occur with EVERY WORD."

So I was not "perfectly sharp," but the frustration stemmed from my inability to get my body to do what my mind was telling it to.

What an insightful question! Thank you!

I'm here making this comment because you promoted the Kickstarter on a vision therapy for adults Facebook page.

Based on the video you made, it looks like you sustained axonal damage or something related to vision. Is that something you can elaborate on? You mentioned stuff about vision therapy. Do you have visual impairment?

I am so glad that you asked! I have diplopia (double vision) and I do have axonal damage, but I was not aware axonal damage was specifically related to vision. Please enlighten me because I cannot elaborate on that.

My understanding is that, since my brain injury, I have fourth nerve palsy, meaning that the fourth cranial nerve of my brainstem is partially paralyzed. This has caused my brain to communicate poorly with the superior oblique muscle in my right eye, which partially controls both vertical and lateral movement.

I have been studying medical neuroscience and surrounding myself with brain injury because I am more than just curious about how the eye and brain function. I believe that vision therapy is beneficial for the entire brain and I speak about this often. Here is a podcast that I was recently in where we talked a lot about vision therapy: Stories from the Brainreels"

Thank you so much for asking. Please tell me more about how axonal damage specifically relates to vision and tell me about yourself. I'm looking forward to your response. :)

Did these events drastically change your religious views?

Good question. I was originally told not to answer questions about religion or politics, but I will answer this anyway.

The answer is no.. not really. I have always had a belief in some sort of extremely powerful, immeasurable, and not at all understood force amongst us all, but I do not subscribe to any institutions that surround organized religion. Nor am I opposed to any organized religion. I believe that there are many ways to get in touch with this force and to work in harmony with it, and I don't care how anyone gets there. Buddhists call this state of harmony "enlightenment," but I believe one can be of any faith (including atheist) and reach this state.

Thanks again.

In the video of you scooting outside the first time you look exceptionally badass! arrgh Question: What was the main thing in recovery that was the most confusing/hardest to grasp the concept of (like matching color names, sequencing, math skills etc) and did your hobbies or interests change? Thanks for doing the AMA, its so interesting and informational!

Thanks. I like looking badass, which is why I love the picture that I plan to use as the book cover. This one is pretty badass too... What do you think? Which one do you like?

Conceptual challenges that were difficult had to do mostly with word math problems that would not only test my math skills, but my comprehension, organization, understanding, and execution of a problem.

Basically, I think that I was able to grasp most conceptual ideas, but my difficulties were/are more involved in motor control. My hobbies have evolved (I guess is the word). Because I cannot run or play sports (which I never liked that much anyway), I am pretty interested in learning how to golf... And I need to go bowling sometime. :)

Thank you, princess!

seems like you came up with the name of the book after the injury

yep

How did you fall? What happened that made you fall down?

I honestly do not know. I don't remember that entire day at all. I was apparently climbing down to show a friend how I climbed up and I slipped. Here's an excerpt from from the first chapter of my book:

"Another friend and employee of mine was attempting to take the same route that I did. He had made it to the upper part on the cross of the "X" support beams and was at a loss as to what his next moves were going to be to bring him higher. He asked me how I climbed up and I said 'Hang out there. I’ll show you.'

Chloe was yelling to him to just take the ladder instead of both of us swinging on the bars like idiots, but he and I ignored that smart directive, because we both felt that taking the ladder would be like admitting defeat to this thing. I proceeded to make my way down to show him the holds that I had used. I tightly gripped the top beam of the scaffolding and swung down, intending to connect my foot with the diagonal beam of the "X" to allow my other arm to also clasp onto the top beam and to support my weight.

But my hands slipped…

Having lost my grip, and without control of my upper extremities, my foot only brushed the diagonal beam of the ”X." I could not reach my other arm to grab onto the top beam; I slid with the momentum of gravity. Like a ping pong ball, my butt pounded on the steel scaffolding several feet below, breaking my hip and tailbone as I was thrust towards the next horizontal steel cantilever, which bashed my left eye as I dropped about 20 feet.

I wish that I could tell you what thoughts went through my mind as I dove towards the ground, just a short moment before these memories were replaced with complete darkness. Perhaps I was scared. Perhaps my life flashed before my eyes as I crashed from one steel beam to the next, and it must have hurt like hell. But the truth is, I do not remember a thing. In fact, I do not remember a single moment of this entire day. The most defining moment of my life has been wiped away, and I am only telling this part of the story based on information that has been relayed to me by others.

The collision of my face with the scaffolding redirected my fall. This put my feet under me when I landed on the rooftop, but I was possibly already unconscious. My legs instantly collapsed on me, rocketting me backwards. Like a court justice's gavel, my head hammered down the final judgement onto the concrete rooftop.

I was instantly unconscious. The crowd surrounding the tower had instinctively stepped back with a gasp, their jaws dropping as I fell. For a brief moment there was not a sound. The mood had changed swiftly, as a few dozen Brooklyn punks wondered if they had just witnessed a death from the impact onto the concrete rooftop that was covered only by a thin layer of roofing tar."

You've come so far in your recovery. How did you muster the strength to overcome your toughest moments?

I don't know. It was in there somewhere apparently. Learning how to allow it to surface was key! I think that healing my digestion was unbelievably huge in mustering the strength. See post: Food for Thought

What was regaining lost skills like? Infuriating? Claustrophobic? Do you have tips for other TBI survivors?

Claustrophobic is an incredible way to describe what it was like. It was like my body was a vessel that I was trapped in, as we all are, but I could not longer control this vessel. Especially my left extremities. Regaining skills was exciting, but the motor skills seem to have plateaued.

Neuroplasticity is the brains ability to change and rewire itself, which is exactly what needed to happen in order for me to recover normal function after the connections within my brain were severed in some areas, and damaged in others. They say "neurons that fire together wire together" and that principle seems to be how organisms learn to do anything new, and if a skill is forgotten, to regain an old skill.

To put it simply, we do not know enough about the brain to have a specific treatment for each diagnosis. I imagine the neurons in my brain like plants. If you see a wilting and sick plant, you don't need a degree in botany and a diagnosis to nurse it back to health by giving it sunlight, water, and good soil. Same with the brain. We don't know A LOT about the brain, but if we can support the environment that the neurons are in (glia), then the neurons can thrive and the brain seems to be able to heal.

I know I'm late to this, but I also had a TBI (moderate), and am wondering if you lost your sense of smell? I hit the back of my head and lost mine, wondering if you had something similar happen.

I did not lose my sense of smell, but damage to a cranial nerve is common. The first cranial nerve (image) is the olfactory nerve which receives input from your olfaction (smell) receptors. I had some sort of damage to my 4th nerve (trochlear nerve) which is one of the nerves that innervates (controls) certain ocular motor skills (eye movement). Because of this, I see double, which is why I wore an eyepatch before getting glasses.

Thanks for the question, MrIndecisive1.

Hi Cavin,

First off thank you for allowing your story to work for public awareness. Awesome and totally courageous. Your a Bad-Ass.

In your videos it is clear that you have had a rich and full life, which you must let into your music. During the shots of you pre-injury vs. post, you seem to have a different clarity, or gratefulness, or grace perhaps. It seems that your perspective concerning your place in the world has shifted. I don't presume to know your life and passions, though speaking on awareness and public education regarding trauma to the brain would obviously not carry the same experience for you pre-injury.

I have two questions.

1. Seeing that music was a great part of your life all the way from C.A.....and that music has saved a life that you are now taking in a new direction, how will music play a role?

2. Does music mean something new to you know?

Okay so three...I am a music teacher and have worked with several students with trauma to the brain. Music is processed through our language centers in addition to many other things. Broca's area is highly active in speech as well as in music.

1. Did you notice any correlation between re-learning music and re-learning to control your speech?

I also posit that due to your extensive musical background, the language and motor control centers of your brain have been abnormally developed for quite a long time. Such types of development in the body preclude a greater ability to heal oneself. I believe that music may have made you the 10%

Do Re Mi - F^@% Yea!

Much Love - Rideout

I am stoked with your insight about the brain!

As you said, music was/is a great part of my life. And that because of my musical background, "music may have made [me] the 10%." Like I say in my story video, "Music saved my life." And I completely believe this to be (at least partially) true. Here is a post that I wrote about how and why being a musician prepared me for such a challenging task of regenerating pathways within my brain. From Musician's Friend:

*"Playing an instrument, you intuitively gain an understanding of how the brain learns. I truly believe that playing guitar prior to my accident was invaluable because it taught me perseverance and patience: useful tools in such an uncomfortable state of inability...

I had sustained shearing to my brain, which is very serious damage. The shearing was particularly to my corpus collosum which networks communication between the left and right sides of your brain. I also had a hypoxic stroke which severely affected my cerebellum. The cerebellum is one of the main areas of the brain that orchestrates fine motor skills, and 'muscle memory.' It showed the most symptoms of being damaged through my ataxia, my inability to walk, and how my left wrist and fingers were stuck in a bent position as if I was trying to touch my left forearm with my left fingers for months. After months of therapy and working on positioning my hand since the accident, I was finally able to wrap my hand around a guitar."*

The point is that music was invaluable to my recovery!

1 - Music has played a HUGE role in my recovery and it is unknown what role it will play in my future. I know that I will continue to play and encourage other brain injury survivors to do the same, but it is a method, not a centerpiece of my trajectory.

2- I have a new found appreciation for a good musician's ability to orchestrate such complex motor skills. The amount of synaptogenesis (the creation of new connections within the brain) involved in developing such skills is even more impressive now, but the real magic is in the song writing process. From my first post

"I feel like music is one of the most incredible forms of human expression and I have learned so much about the brain function involved in playing an instrument. The creative process, however, is far more complex and is an absolutely beautiful mystery to me."

1- Gabby Giffords, is a hero to me. She has aphasia and was/is unable to come up with the words for an object or idea. In this video, mysic was used to help her regain language because music seems to use a different pathway within the brain to be recognized. Therapists played a song that she recognized/s and, miraculously, she was/is able to sing along.

Do Re Mi all day, and much love back atcha, Mr. Rideout!

During the 4 months you couldn't move what was the one thing you wished you'd done when you could move?

My legs. It's pretty awful to be somewhere and not have the option of leaving! I am SO grateful that I can walk! I may still be unable to run away, but I can walk away now.

Hey Cavin! Fellow coma survivor over here! I was in a coma for 18 Days and pretty much had a very similar recovery. It has been 6 Years since the car accident that put me into a coma, and I have been fighting depression ever since I woke up. I am certainly very capable now of just about anything, but I feel as though I lost some of my intelligence. It takes me longer to do things then it used to. Sounds like you are doing great! Best of luck in your endeavors!

Hey lucky, Glad to hear you pulled through! Depression is a hard battle to fight. I remind myself of how far I have come. You have a thirst for knowledge, I can see. You are on reddit presenting your difficulties openly, so use that thirst to your advantage and try to quench your emotions.

Mental stimulation is great, but certain ingredients need to be added while others are eliminated from your diet as well. This is shown in mental health a lot. In fact in this study, they found that 50-90% of IBS (Irritable Bowel Syndrome) patients seeking treatment have a psychiatric disorder. 50-90%!

Here's how I broke down brain healing earlier, in a response to 4ScienceandReason:

"To put it simply, we do not know enough about the brain to have a specific treatment for each diagnosis. I imagine the neurons in my brain like plants. If you see a wilting and sick plant, you don't need a degree in botany and a diagnosis to nurse it back to health by giving it sunlight, water, and good soil. Same with the brain. We don't know A LOT about the brain, but if we can support the environment that the neurons are in (glia), then the neurons can thrive and the brain seems to be able to heal."

Thanks again, and I will be checking this thread for a long time. I look forward to your response.

What's it like being comatose? Is it anything like in the movie monkeybone? Or my name is earl? Or any other movies/tv shows with someone in a coma? Or is it just like being asleep and time passes at what feels like the blink of an eye?

I love this question. Here was my reply to a similar question from amagicmoose:

"Such an interesting question!

I woke in a fog, so it's hard to say, but I lean towards it being more like just being asleep... only more asleep than usual. Have you ever just dropped and slept like 12 hours or more? I suppose it was sort of like that. One strange thing is that, if your GCS score is above a certain number, you can respond meaningfully to commands (i.e. hold up two fingers, wiggle your toes if you can hear me etc).

During my comas, my mom told me over and over where I was, what happened and that we would get through this together. She sang to me too. She sang “Blackbird” by The Beatles, which was the first song that she taught me to play on guitar. Oddly, the first song I tried to play after my brain injury was “Blackbird” even though I had no memory of being in a coma, and even though I was in a coma during the time that she sang to me. See post: Musician's Friend"

Have you considered Conductive Education combined with Hyperbaric Oxygen Therapy?

Conductive Education is a therapeutic exercise program specializing in brain injuries that result in problems of movement like Cerebral Palsy, Stroke and including Traumatic Brain Injuries. It teaches you to form new pathways in the brain around the damaged area to improve control of movement in the limbs.

Hyperbaric Oxygen Therapy increases the body's natural production of stem cells by 800% making it much easier to create those new pathways in the brain.

Here is an example of one of the few places that offers both therapies combined and takes adults with Traumatic Brain Injuries. I have been going there for Hyperbarics for something else, but I am amazed at the results they get with Brain injuries.

This is very interesting! I've heard a lot about Hyperbarics and I certainly want to learn more about it. What is Conductive Education involve?

Thank you for the resources. Do you happen to know any spots near Austin TX that offer both therapies combined and takes adults with Traumatic Brain Injuries.?

Thank you for doing this AMA. I'm at work right now so I didn't look at all of the links that you posted, but I will when I go home. My brother was in a serious car accident 2 and half years ago and was in a coma for a month and a half. He also has had to relearn everything. It has been a crazy journey. At this stage in his recovery he is relearning social boundaries in a sense. Did you have trouble connecting with people (other than family) after your fall? He's lost all of his friends. We've really learned who is there for us and who is not, which is OKAY. I understand that he's different now and it may be awkward for people. My mom struggles with this a lot. It's like people think all of a sudden he's mentally handicapped, but it was a serious brain injury people!! Does any of this sound like any part of your experience?

Thank you. It is really my pleasure.

I can really relate to this: "We've really learned who is there for us and who is not, which is OKAY." I was able to see who was a real friend and who was not. I also got to see what each member of my family was made of. And, after finding acceptance in any disappointing realizations, I came to see that the opportunity to learn who is there for my family and I, and who was not was actually one of the very few "gifts" that came from my brain injury.

Could you elaborate on social boundaries (you don't have to, and you can message me if you are more comfortable with that). I don't think I did have those troubles, possibly because of the love and support that I received and was able to recognize early on.

As far as people perceiving brain injury as a mental handicap, this is one of the reasons why I am writing a book, keeping a blog, sharing pictures and videos, and doing and AMA. I do not expect to change the social stigma of brain injury, but this is a start. Thank you and stay in touch!

What was your last memory? I know you said you spaced out for a month so I'm quite curious as to the last thing you remember.

My last memory was doing a gig the night before. The company that I had created with some friends as employees provided sound equipment and sound engineering to parties and events throughout NYC. This night, an employee and I were transporting, renting, and monitoring for a party at a Jewish Synagog in Manhattan. I remember us accidentally taking a lane that took us into the Holland Tunnel. Yep... we accidentally drove to Jersey. Only on the east coast do you accidentally drive to a different state.

I remember loading the gear back up at 4 or 5am, getting paid (I think) and then going home with the gear and going to bed. That is my last memory before the accident. The entire day that followed I have no memory of, but, based on what my friends have told me, I have put the story together for my first chapter here.

"I wish that I could tell you what thoughts went through my mind as I dove towards the ground, just a short moment before these memories were replaced with complete darkness. Perhaps I was scared. Perhaps my life flashed before my eyes as I crashed from one steel beam to the next, and it must have hurt like hell. But the truth is, I do not remember a thing. In fact, I do not remember a single moment of this entire day. The most defining moment of my life has been wiped away, and I am only telling this part of the story based on information that has been relayed to me by others."

Glad you are getting better, but I have to ask.......Did you adopt the name Cavin after your head injuries?

Nope... Not sure why that would make sense. When I was born, my birth certificate said "Baby Boy Balaster." For 6 weeks, I had no name. They tried Vinnie, Nick, William, and Reed, but none of them worked for them. My mom would take me to the grocery with her friend holding a sign that said "Name this baby!"

One day, my mothers best friend, who was present when I was born, came over to my mom's house with "The Baby Name Bible," slammed it on the counter and said, "we are going to name this baby tonight." It was then that they found the name, and I get to hear and watch it be butchered daily. :)

Cavin-- I find you so inspiring, and smart, and intuitive. I can think of many other adjectives. You have such a level head on you, and your thought processes seem so crisp and well thought out. Please don't get mad at me for asking.. and you don't have to answer, but what were you thinking when you climbed the water tower. You don't have to answer.

2- Has your mom noted a significant change in your personality since your injury?

3- I am so heartened that you are pursuing a medical profession, I can also see you as a therapist-- You have such a healthy way of looking at things. What you said about the friend that stole from you ''We have managed to construct a little shack upon the shambles of our dilapidated friendship, and perhaps, one day, something stronger will be built; but I do not intend to work any harder than he does to do so." That is amazing!!! I agree with you, people have the power to change- provided they want to, and sometimes just because someone believes they can.

• It seems your accident has more than one miraclulous-- aspect to it. Seems like you are touching so many many lives.

You picked some very nice adjectives, iaviva! Thank you so much!

I am not at all mad about you asking any question. That is why I am doing an AMA.

1- I described exactly what my rationale was for climbing the water tower in my first chapter, but I had been climbing my entire life. I grew up in the mountains and, because my house was constantly under construction, scaffolding and rocks acted as my jungle gym.

I do not remember that night, but my friends said that I was climbing very well until I slipped on my way to show a friend how it was done.

2- I am going to refer to a response that I made to ShitiestOfTreeFrogs that may answer your question about changes in personality. These are the only real changes that my mother has noticed... I am still me.:

"At first, many of my friends and family told me, "you have changed." I believe this is because I was in less control of my emotions. When something angered me, I used to be able to stop and think before lashing out, but I had lost my ability to control my temper. You know that feeling you get where your "blood boils?" I would feel that when something pissed me off, and was unable to stop myself from becoming belligerent.

I have since gotten so much better at controlling my temper. It is what my mother would call "Buddhist monk training." I have gotten pretty good at letting things slide and accepting the things that I cannot change."

3- Thank you so much! This is a true passion that has come from all of this. I will soon make a post about my future. I am calling the post "Goal Keeper." Stay tuned for it, and subscribe to my blog if you would like to stay updated. Thank you again for the kind words!

Your story is so inspiring and watching your recovery videos brought a smile to my face. Amazing! As a former paramedic I never really knew how most of my TBI patients faired past the first few days. Stories like yours always remind me that they might have stood a fighting chance in the next chapter that I was never privy to.

Then I hit the videos about your sweet dog. Now I'm crying and squeezing my pup tight. Time to put the internet away for the evening.

Bless you Stella. I hope you slept well, and thank you!

fell two stories and landed in a coma...i see what you did there

You like that?

I am late to this but I will ask anyways. My dad has a pretty bad TBI from a motorcycle accident 4 yrs ago he his doing much better but I feel he will never be his old self. Do you feel you lost part of who you were and changed since your TBI? Also if you do feel you are not the same person anymore have you come to terms with that?

I'm so sorry about your dad. I actually feel like I am the same person, but I will never be the same. Does that make sense? I have lost many abilities and been forced to steer my life in a different direction, but I have certainly come to terms with the fact that I will never be the same.

It does make sense and thank you. Although he is doing great considering his TBI I see him struggle with everyday battles others don't. One of those battles is finding himself gain. I wish you the best and again thank you for answering peoples question I think brain injuries are life changing but unknown how much it is to those who live even years after.

While I hated to be filmed at the time, I was so happy to see video of me later. It showed me, in an inarguable way, the gains that I was making. I highly recommend care takers and loved ones to document recovery, and how better to document than to film. Not all the time, but occasionally and consistently... especially when milestones are reached. If he won't let you, try telling him that another brain injury survivor told you that he will be grateful later. Cheers! :)

They actually did that when he started recovery but it was for legal reasons and I do not think we have access to those. We kept many pictures from ICU and rehab which come in handy. When he first got home he thought we lied about the accident and thought he was dying from cancer due to having no memory of it and feeling awful so much. Four years later he has a better grasp but still needs reminding how far he's come when he gets frustrated. I understand though he was a strong hard working father and husband he was our rock and now he feels anxiety confusion and not working has him feeling less useful. He always had advice and was well spoken calm and now I see him struggle to find his confidence.

It sounds like he's still in a brain fog. I was also in a fog, and the healing of my gut was my ticket out. As I say in this post: Biology, Evolution, and the Brain

*"Every living organism on this planet – be it bacteria, amoebae, fungi, plants, insects or animals – has some sort of a digestive system and some sort of a nervous system. Chambers 21st Century Dictionary states that “Organisms undergo metabolism, maintain homeostasis, possess a capacity to grow, respond to stimuli, reproduce and, through natural selection, adapt to their environment in successive generations.” (1)

If evolution, or natural selection, is the basis of life and biology, and both metabolism (digestion) and a response to stimuli (nervous system) are included in the definition of a living organism, then there must be an ancient, deep, and highly evolved connection between the digestive and the nervous systems within the human body."

Read through the post, which describes how and why the gut is where your focus needs to be with links to the above post for specifics: Food for Thought

Inspirational story Calvin. A truly hardy, incredible being you are.

My questions are: do you ever have some sort of abrupt pain due to the accident? And what are the effects of a coma for the human body?

I constantly was in a sort of "pain" for more than a year. The left side of my body was numb yet ached in a terrible way. It was unlike anything I have ever experienced. It was very strange. I feel like I said it pretty well in this post: The Push and The Pull

"I was incredibly weak. Every morning I woke up in pain. It was a pain unlike any I had ever experienced. My legs were numb yet ached… My left especially. My left leg sort of tingled and was sore, while my right leg was just sore. I felt like I was a hundred years old. When I rose to my feet, I had to kind of push myself off of the bed to my feet but towards the wall, because I knew that I would lose my balance immediately when I was upright and I would need a support like the wall. My legs would wobble uncontrollably for the first few minutes, but the shaking usually would subside after a few hours. My brain and body needed to figure out how to work together every morning, and never seemed to get it right."

Firstly, congratulations on your recovery, it is truly spectacular and you obviously know you are extremely lucky.

I'd like to focus rather on the couple of points you raised in terms of alternative therapies and conventional medicine offering little in terms of treatment. I'm sorry if my questions are answered somewhere, I just couldn't seem to find anything...

What sort of alternative therapies are you researching and to treat what in particular? And also what do you mean by conventional medicines do not have much to offer in terms of treatment?

Your story is amazing, but I would really recommend you thoroughly exploring all conventional treatments before moving onto to other potentially dangerous methods of help. I'm sure you know this and I don't want to belittle or patronise you in any way. Would love a reply though.

Thank you so much for the congrats.

What I mean about conventional medicine offering little in terms of treatment has to do with the paradigm that conventional medicine subscribes to. Don't get me wrong, the scientific method is extraordinary when it comes to acute care. "Outside of acute stage treatment, however, its focus seems to be driven, in many cases, on relieving symptoms, instead of solving the underlying issue. Keeping in mind that pharmaceutical companies fund most research, so there is an underlying agenda for this research to culminate into the development and production of a marketable product and for the need of that product to last as long as possible." (from post: The Proof is in The Pudding… and The Problem is in The Paradigm

I am certainly not at all opposed to conventional treatments, and would absolutely have used, and would use, more conventional methods if they met my criteria for choosing therapies. Here's what I have done to steer my recovery and how I choose therapies for myself. I weigh the risks vs. possible benefits for ANY treatment, including conventional. The "alternative" therapies that I have employed involve changing my diet to the foods that humans have been consuming for hundreds of thousands of years, doing vestibular exercises and working out to a level that is not at all taxing, as well as only taking supplements that have been shown to be well tolerated in the literature. These are methods the met my criteria because of the very low, if not non-existent, dangers that they pose.

Thank you again for your nice words and genuine curiosity. If there is anything that I didn't answer, please reply. Thanks, Ryan.

Cavin,

Where did you go for your OT/PT?

At first, most of it was done at Mount Sinai in Manhattan. After 5 months trying to get medically stable, I moved to Austin, TX and began doing PT at Lakeway Aquatic Therapy ([see post below) and OT at St. David's much later.

About aquatic therapy from Out of Balance: "Because I was uninsured and waiting to be accepted by CRS (Comprehensive Rehabilitative Services), we had to weigh the therapies that I couldn't afford to loose ground in and pay out of pocket to continue my rehabilitation. After I began Vision Therapy, the next move in my triage of care was Aquatic Physical Therapy at Lakeway Aquatics in Texas. I began trying to regain a bit of my balance. One exercise was in the 3ft section of the pool where I would get a ring with a one foot diameter around my right foot and lift it if to my hand. This forced me to stand on my uncoordinated and weak left leg for a second. This was impossible for me on land, and almost impossible in the pool. I used a float for support at first. It was definitely safer in the pool because if and when I fell, I would be in a pool so I wouldn't hurt myself. I also only had to balance on a third or so of my weight in the pool which made it more of a possibility.

I also attempted to jog for the first time. I did this in the pool not only for safety reasons, but because of my lack of strength. You can watch the video and see how difficult it was to coordinate my legs even in the pool."

Yikes. I don't have any questions, just wanted to say you're a badass. I suffered a minor TBI in a car wreck and was kept largely in an induced coma for a few days. They did have to go in for some hemorrhaging near my frontal lobe at some point. Not much relearning to do, it was all pretty much about recovery and rehab from my numerous injuries. But nothing that crazy.

That's a brain injury either way. Thanks aresef. You badass too! :)

I don't have a question. I just wanted to tell you, thank you for sharing your story, and I'm really happy that you've come so far in your recovery.

Regardless, congrats again on your recovery! You seem like a wonderful human being. I went ahead and supported you on Kickstarter too. It's not much, but I really want everyone to have the chance to hear your story. I'll also help and spread the word about your Kickstarter.

P.S. I think we may have a friend in common, if I'm thinking of the right guy. :)

Thank you so much! Every little bit helps. Feel free to email me to find ask about our possible common friend. :)

It seems that nutrition and diet affected your recovery. Any tips out there for TBI survivors and their caregivers or just diet and nutrition in general?

I have tips for brain health beyond TBI. After my brain injury I found myself researching ways in which to optimize brain function. Healing my gut and optimizing my digestion was one of the most important therapies for my overall health, which translated to my brain health. This is an article that I wrote about how nutrition saved my brain.: Food for Thought

The most important thing for my brain was for me to stop eating toxins, especially gluten. Today's gluten is not the same as it used to be. Today's gluten is treated to create deamidated gliadin. This causes molecular mimicry in which, to put it simply, gluten messes with your brain's communication between itself and the rest of the body. Most people think that a bad response to gluten is only in the digestive system, but more and more research shows it's effects on the brain.

Other tips: JUST EAT REAL FOOD. This article lays out what that means to me: Biology, Evolution, and the Brain

Did your perception of time change when you recovered?

I always had a terrible perception of time, and so I used technology to help me: alarms, reminders, etc... I have gotten so good at adaptive technology by now, that I think that it is actually improving.

Hi Calvin, I'm glad to hear your recovery is going well and I'm wondering what your biggest success in your recovery has been so far and what is still challenging you the most day-to-day?

Hi Patty, I think you are asking what was the most effective method of recovery for me, so I will answer that.

I was in a brain fog for almost a year after my TBI. I began to see a functional neurologist who did a blood test and found that I had low levels of protein in my blood. At this time I had been having a protein shake every morning and ate meat with every meal, so this made no sense to me.

I had intestinal permeability, or leaky gut, which is very common with a brain injury. Basically, some food would pass into my bloodstream undigested and would be attacked by my immune system. This would cause inflammation. This caused inflammation in my brain, which diminished communication with my gut, exacerbating the intestinal permeability (see post: Food for Thought). While healing my gut, my brain function began to also get better, and the brain fog, that I had been in for almost a year, began to slowly dissipate.

I have lost so many abilities, but I have retained and honed others. Today, I am unable to run or coordinate jumping jacks, and I dance like an old white grampa. :)

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I was always thinking, "How the hell am I gonna get out of here?!" I felt dependent and awful. What was going through my mind was, at first, that I had been abducted and they were doing some sort of evil tests on me (Check this post out: Roid Rage).

You mentioned that you could not walk, talk, or eat. Could you still understand what people were saying?

Yes. I could move and follow instructions (thank god!)

See the trailer to the book that I am writing: Lights, Coma, Action!

are all parts if your brain working normally? if not, do you have any deficits or have other parts of your brain taken over those jobs?

also I'd like to recommend a book called 'the brain that changes itself' by Norman Doige. it's got some great stories and very interesting info on some therapies.

I certainly have neurological deficits, especially concerning motor function to the left side of my body. There is damage to my corpus collosum, which is the network of white matter that connects the left and right hemispheres. I also have damage to my cerrebellum, which coordinates fine motor skills. This is what it looks like when I use my left hand: Ataxia 13 Months After Brain Injury

I have been told good things about that book. I very lightly and quickly skimmed over it about a year ago. I have since read a lot of VS Ramachandran's work and have been studying medical neuroscience as well as functional neurology. What kind of therapies does it talk about? I hardly remember any of that book. The gist that I got was that my brain could form new connections and other parts of my brain could take over the functions of damaged areas.

Thank you for the Qs!

Cavin, I am so proud of you, what you have accomplished and what you continue to accomplish. I never held back asking questions overtime throughout your recovery ;) but I will say I am admiring you for jumping into this project, "cavin bounce" has come so far .. It went from an idea in your moms kitchen to a blog, a kick starter, videos, public speeches, and on and on.. I love you, great job ! Keep it up! 0:)

I love you too, Jenn! You are absolutely incredible!

Greetings from Brooklyn. Good to see you're well. What part are you from? Crown Heights here.

P.S. The eye patch makes you look like Big Boss. Cool.

I'm actually from Colorado. Lived in Bushwick for 8 years. Cheers!

Your progress is incredible. It must have been a tremendous amount of work. What hope is there for a full recovery in the future?

Thank you so much. I'm not sure that there is such thing as a "full recovery." I think that you find a way t o adapt to your circumstances and to become content, and I feel that I have done just that. Thank you again. Cheers!