Brain Injury Press

Photo from Natasha-Richardson.org

I know Yahoo.com doesn't have the best cited information - but I stop by for some small information and headlines sometimes when I'm not feeling my best. I like to continue to read, even when I don't think I can comprehend much... and this is the kind of small reading I tend to go to!

Anyway...

The news of Natasha Richardson's death is absolutely horrifying. However, I feel this couldn't be a better time for the increased awareness of brain injuries and just how severe they actually can be.

Since the day of my accident, I have felt that somehow I've been affected at a moment where NOBODY knows much about mTBI. And as much as this fact has stunk up any easy recovery... as the months go by more and more situations arise which start making mTBI a HUGE deal on this planet. This is just one example of the awareness that I feel I might be in the middle of when I'm finally well enough to make a stand and become an educator and advocate about the horrifying ordeal that concussions can lead to.

A few days following Natasha's skiing incident/death - I am not sure the exact date, but had thought to blog about it! - I had noticed in the bottom right of my browser on Yahoo.com "Today's Top Searches" that "Brain Injury" was number 6!!!

Now, I didn't ever think I was going to die. I was in excruciating pain for a good 8-14 months, but I never felt my life was at risk. I had significant pain which I thought I was dying or going to have a seizure or pass out and hit my head again and bleed to death (dramatic I know...). I hadn't had a CT of my brain at the time my head was hit, but my CT of my neck was less than impressive and my MRI of my cervical spine a month later wasn't showing anything significant either. In February, I finally had an MRI of my brain and everything seemed clear. I was thrilled to see I had a brain!! wooooo!!!

I hope this link works. This is a pretty inspiring video of a little girl who was hit in the head by a baseball and was 'talking and she was fine' and had 'a bump on her head, but no symptoms whatsoever' until she started to have a migraine a few days later... she had a similar acute epidermal hematoma (significant bruising/blood clot) to what killed Natasha.

It makes me wonder if I might have had a similar hematoma that disturbed some of the blood flow to the neurons I've had to rebuild over the last year plus. I'm just thrilled this girl was so strong and can't imagine what pain she might still be experiencing - but bless her having the strength to forward the brain injury awareness to the world.

My mother also told me that she heard Obama recently mention in one of his speeches that he was awarding troops or veterans increased funds towards treatment of brain injuries - anyone hear this too?

I know I'm not the best at citing references, etc... but I'm working on it.

Perfect Moment of Relief

Perfect Moment Roses

I received years ago

Tough Boy:

1) Assess the stresses that are preventing you from focusing on recovering.

2) Get creative. Think outside the box!

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An article headline caught my attention just now on Yahoo.com in the Finance section. It read: "More women needing cash go from jobless to topless." Ha. I got a little chuckle out of it. I didn't read the entire article, but if you're interested here's the link.

The irony of this... I've actually thought about this as an option to make money. Thankfully I kept holding out until I could make better decisions; but desperate times call for desperate measures and as a young woman in her early twenties... I kept it in the back of my mind (as for some other options I'm not too proud of!).

Financial stress has always been the number one variable to cause worry and anxiety - even before my accident. I know I'm not alone. With this economy, brain injury or not, anxiety has heightened about how people will can cut back on frivolous spending and maintain their sanity. My biggest concern - and others - from not having any income points specifically to how am I going to pay for my rent, keep my home, maintain the stability and security that is provided from the roof over my head.

I don't have the answer for this. But I do encourage creative thinking. Asking people you know for money is easy when you're raising funds for people you both don't know, for walks and charities. It's a whole new ballgame when you need money for yourself.

How have I done it? I was able to get a credit card that (for a fee) would cash advance money into my bank account, I have an amazing landlord that has let me live month-to-month until I couldn't do it anymore, he moved my 'last month' that I paid when I moved in 4 years ago to be February's rent, and most recently had many prayers answered. I don't own anything and can't get a loan, I've maxed out my credit options, my family cannot help much... so what other options do I have? Stripping? Phone sex operator?... uh... where are my morals???

I needed something that could give me a lot of cash by April 1st. Something that wouldn't require 'working' just yet... I just can't yet. Something that will be easy enough to BS my way through. Something I might enjoy anyway...

Whether God answered or I just got lucky - pieces started to fly together and it started to become clear that the only loans I could qualify for were for education, as long as it was a graduate degree. By the grace of having the stars align just right... I 'stumbled' on a Master's in Social Psychology that was starting on March 2nd - the day my student loans from Pharmacy school would become delinquent. I busted my butt to get the application in ASAP, within two days I was accepted and started the student loan process.

It just made sense. It isn't a free ride - it's still a lot of work. I read Psych all the time and I like to write (even though this stuff requires a TON of energy for deadlines etc...). It deferred my loans for in-school status from the DAY I needed it most. It went off my 2007 taxes (when I worked before I was hit!) and I now have about 11 months of rent coming. The application fee had been waved for a few weeks right when I needed to apply. It's COMPLETELY online and I can do it while still going to RI for treatment or at 4 am on the fourth night of insomnia/migraine.

Honestly - I have to believe nothing is a coincidence. It came at the perfect moment with all the right answers. I believe I'm in my apartment because "someone bigger than me" knew what I was about to go through and believed it would be what I needed to make a recovery through these horrible few years. I had to believe "they" wouldn't take it away from me until I no longer needed it to recover 100%. It was my biggest challenge while trying to develop a minuscule amount of faith. I now have the biggest financial stress on quiet for a while to allow me to focus on getting back into Pharmacy and building up some work endurance ever so slowly.

I am so thankful. Not everyone is as lucky. And I encourage you to continually keep pushing buttons and thinking outside the box. Answers will come at the most critical time - last minute! Creativity, creativity, creativity... its not easy, but just imagine the possibilities!!

Keep Applying, Keep Appealing, Keep Faith

Some small tidbits for a Tough Boy as we wait for Spring, longer days, and more sunshine (for those in North America)!!

1) Apply for your Statewide Head Injury Program (SHIP). Not all states have one, but it's worth looking into. This is the link for Massachusetts SHIP info.

2) Denied Social Security Disability? Here's an online appeal link.

3) Explore other - sometimes less obvious, less solid, less structured, or less tangible - avenues for support. Whether you have faith, want faith, need faith; whether you believe or you know others that believe in something different, religious, greater than you, or spiritual. Pray, have others pray, or dig a little deeper in yourself.

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Today I received a long awaited letter from the Massachusetts Rehabilitation Commission regarding my application to the Statewide Head Injury Program (SHIP).

I have been determined ELIGIBLE!!!!!!

This could potentially lead to a less grueling attempt to participate in vocation rehab - which I so desperately need to begin working again.

Not all state rehab services have a specific head injury program to apply to - but it's worth looking into. I'm also not sure about other countries (such as Canada or New Zealand). This is the link for info on applying for Massachusetts' SHIP.

Even if you aren't found eligible for services, it's important to apply anyway to help create awareness of how, when, etc you were affected by a head injury or concussion. A lot of funding governed towards these programs are allocated based on numbers - and those numbers are probably largely inaccurate for mild brain injuries. It could be your little impact towards better recognition and awareness for this frustrating invisible disability.

Update on My Life

I've been a mess the last few months. Uncharacteristically, last week I had a really great week. However, I am back to experiencing different levels of anxiety, neck/back pain, some depression, and a lot of unknown and uncertainty.

Thank you for checking in on me - for those who have - I'm still alive, just crawling along. I really do appreciate your thoughts and/or your prayers.

Low Energy Neurofeedback System

I know I am still yet to talk about the LENS treatment I've been getting - but I had gotten "too much" neurofeedback about a month ago and it resulted in the most unstable emotional state I've ever been in. Its important that someone who treats you with LENS knows how to go slowly, or to slow it down if you experience a week of instability.

To just touch a little on how bad it was: I cried... no, I weeped and ruminated in a persistent panic attack from the Thursday morning to the following Tuesday afternoon.

I knew it wasn't normal, I knew it wasn't how I think, and I'm fortunate to have been aware enough to know the difference. Needless to say, in that time, I really felt if those feelings would continue until my next weekly appointment, I needed 24 hour observation and a team of qualified mental health professionals to stabilize me. I had called my insurance about inpatient coverage, I had found McClean Psychiatric Hospital and found someone to take me there if I needed, I discussed admission procedures and even discussed with my lawyer, if I were to go what my options would be to cover the expenses. I was completely ready for a two week intensive psychiatric intervention as an inpatient.

There Just HAS to be Something Bigger than Little Me

That Thursday, I went to the book store and bought a book found in the 'Christian' area. For the entire weekend I was finally willing to really devote myself to reading about why 'God' makes people suffer and how 'He' plans to redeem you.

I found a book written by a psychologist that works with adults who were sexually abused as children, Dan B. Allender, PhD. His book, "The Healing Path," was not very preachy - which is exactly what I needed to begin to think about and maybe begin to accept something bigger than me, possibly called "God."

I was baptised both Roman Catholic and also Protestant. I attended a protestant church when I was very young, but my upbringing really didn't stress religion at all. By the time I was attending college, I gave up the fact that the bible would ever influence me. Three or four years ago, I actually flat out denied any faith - if I felt the need to pray, I would deliberately stop myself and say out loud "No, God doesn't exist. Anything I say will be wasted breath."

I can't sit and read the bible. I don't have the patience. I don't understand the language. I need someone to tell me in layman terms. I don't want a ton of (possibly fictional) bible stories as examples; I want real people who believe to tell me why I should believe, how they pray and what he's done for them. I'm a tough critic. But part of it is a readiness to accept a faith and put everything driving me to stress out, hopefully, into someone else's hands. I was so very much at the bottom of the world and ready.

This book was really good for what I personally needed. I am still not religious, or pushing it on anyone, but I am making a conscious effort to believe God has a plan. I am making a conscious effort to pray for Him to love me - for everything I am right now, as I am, despite everything I am incapable of doing right now. This book got me through the week until my next appointment.

Stressed and Overwhelmed

So between getting denied social security, missing the 60 day deadline to appeal the denial, not hearing from SHIP, not getting on a list for vocational rehab services until at least April, not having a dime for April 1st rent and beyond, having to RELEARN six years of pharmacy lingo and thousands of drugs to take my boards March 12 and 19th, and having absolutely NO energy to pull myself together - I'm trying not to freak out. I'm still alive.

One thing at a time. And some things might start to look a little up... but before I count the eggs in my basket, I'm still waiting anxiously for some very critical things to fall into place. Please continue thinking of me and I will try my hardest not to tweak out before jotting down any other things that can help you in your life through your recovery.

If it helps - I'm thinking of you, too.

QEEG - Quantitative EEG

To begin Low Energy Neurofeedback System therapy (otherwise known as LENS) I've been going down to RI once a week for the last two or so months to begin my neurofeedback.

One of the first meetings was to take my brain map to get an idea of where my brain isn't "normal." It's called a Quantitative EEG. They put a swimmers cap on me with tons of electrodes attached and 'injected' goopy gel into the holes where the electrodes are. The gel is supposed to aid the conduction of your brain waves to be read from your scalp. These maps are utilized in many different disease states - depression, epilepsy, migraines, ADHD, mTBI - and are pretty complex. They can be taken while you're doing a project, like talking or reading or math problems; they took mine while I was to sit there with my eyes closed and told not think of anything for 12-13 minutes.

There are several brainwaves that are always present under that skull of yours. Depending on what you're doing or if you're injured their are different ratios of those waves present. But it takes someone really educated in the mapping to interpret them (for example: ADHD kids will show too many delta waves, increased theta waves, decreased alpha and no significant change in beta waves all in the prefrontal and frontal lobe area... I'm not sure if they have to be doing something or just sitting there for that combination).

The waves are given names in groups of different frequencies. Delta are generally the waves 1 Hz to 4 or 5 Hz. Beta waves are the higher frequencies - 12 Hz to 25 Hz. High Beta include faster waves to 30 Hz. The program they use to measure all your frequencies that are present at the same time sorts them and creates colorful 2-D pictures to give you an idea of where it picked up how many, what amplitude, and by each frequency (1 Hz - 50 Hz) and by the clusters of frequencies that would make up each kind of wave.

This is an example of one of my faster waves in the Beta range:

It really doesn't tell you anything except there is more in the back right of my head than the front. The real information starts to come when they take this data and create more 2-D graphs after comparing your info to those of people in your age range and gender that are "normal" or "healthy" or people with no injuries or problems. If you are "normal" and just like everyone else like you should be - you will have a completely green brain!!

My alpha waves are perfect!!

The scale on the bottom is a standard deviation scale - based on a general bell curve I believe. So Green is normal... and Blue would be very low, Red is WAY WAY WAY too much!!

So this is where the cool part comes for people like me - who were starting to think they're a hypochondriac because nothing is showing up anywhere. MRI, CAT scan, whatever - nothing is wrong with you. Well I got hit in the head and things just aren't right... but there's nothing to show it.

Here's one of my higher frequency (28 Hz) waves after being compared to normal people - can you tell where I was hit? Can you see where my migraine was the day I had the map done? THIS IS SO VALIDATING!!!

And then when grouped into High Beta (25 - 30 Hz) it's an average, but still very clear to me!!

Sooooooo cool. It's pretty much used as a diagnostic. And guess what - I got hit in the head and my brain waves changed.

People with mTBI generally have WAY too much delta (the slowest waves, present when you're at your deepest sleep) and WAY too much beta waves (the fastest waves, present in anxiety and panic attacks) that can be seen where their injury occurred.

This... THIS is a mechanism. This is why my vision in my left eye has been ridiculous, this is why I'm just not the same, this is why I get easily over stimulated, this is why I can't think correctly all the time, this is why I've had to relearn everything in my life, this is why my personality has changed, this is why my sleep schedule is screwed around, this is why something actually happened when I was hit. This is what's wrong and where we can begin to see where I can benefit from LENS therapy. Which I'll talk about next...

Drugs or No Drugs

Tough Boy:

1) The first place you'll go is to a Neurologist - they're great if you're having problems that need medication.

2) Find a NeuroPSYCHOLOGIST that has worked with brain injuries, head injuries, whiplash/car accidents, concussions. They can't give you drugs but they know more about the cognitive part that many neurologists aren't educated about (but they can give you the referral!!)

3) Can't find one? Visit the Brain Injury Association state directory - give them a call and ask if they know any neuropsychologists in the area that can evaluate you and your brain injury.

4) Ask questions... and if you're on drugs - talk to you pharmacist! They'll go over your medications with you and might know some things you won't get from your doctor!

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My neurologist gets a kick out of seeing me every 4-6 weeks. Why? Because I'm the pharmacist that doesn't want to take drugs.

This isn't entirely true. I know a lot about drugs. I believe they can be an incredible aid towards the quality of life or even extension of someone's life expectancy with certain diseases. I believe they are important and a crucial part of health care - when used correctly and monitored appropriately. Drugs get a bad rap sometimes but I'm a firm believer that they can be pretty extraordinary... again, if used correctly.

The trouble is - even as a pharmacist, especially now that my circadian rhythm is all screwed up, I'm not taking things correctly (same time every day, 2 hours before or after eating dairy, missing several days in a row because I'm sleeping, etc etc). And there are many important little tidbits people just aren't aware of with their medications. Just another reason why it takes six years to get your pharmacy degree, and another reason it's a Doctor of Pharmacy and not an Associates or Bachelors. And why patients should ask any and all questions to their pharmacist to get them involved in their care.

I know a lot about medicine and disease states, which made it very difficult to be the patient when I was at the worst of being sick. The majority of learning about pharmacy is learning mechanisms. There's a mechanism to why your heart isn't pumping efficiently and there's a mechanism to how it can be fixed - and generally there's a drug that performs that very mechanism that will make you feel better or extend your life. But with a brain injury, with everything I had been going through, there wasn't a mechanism. There are symptoms that resemble other disease states, like migraines and dizziness and fatigue, but the why and how wasn't there. The only mechanism - "you have an mTBI, you had a concussion." So until I know what is going wrong, until someone can really give me the mechanism - I haven't been too keen on taking a bunch of their suggestions (however, if I were having seizures I'd be taking those drugs!!).

My neurologist finally talked me into taking a 'triptan' for my migraines. It was like breathing. I'm smart, I've had my 'brain' start coming back slowly, I've been re-learning my mental math, I've been understanding things a little more and a little faster as every month passes, and I've been very slowly seeing parts of my personality come back. I'm just living in this cloud of a constant migraine, sometimes worse than others, sometimes with head pain and sometimes with just insane nausea. If I could just get rid of the cloud, if I could just breathe, I could regain so much of my daily functionality! Taking the Axert that first time, I was like... "wow."

Imagine being in your hot shower, or in a sauna for too long that it's hard to breathe and hard to get much other than heat into your lungs - then you get out and open the door and... ahhhhhhh, breathing. The colder air fills your lungs and your panic decreases and you can think and... ahhhhhh, breathe. I decided that day that the next time I would go to my neurologist I'd say, "yes, give me the Topamax," I know it works for people who have migraines, I know it is known to work, I know I've read the literature, I know that I need to live without the migraines.

I went to my neuropsychologist the next week and he agreed that I'm really smart and I could function better if I could get rid of the migraines. Great, same page! But when I mentioned the Topamax, he was adamant about trying something else first, "don't go on Topamax, you have such a good brain, you have so much potential." Apparently, in his 30 years of experience he has seen that Topamax really does work - but it has some cognitive decline, it has a tendency to make people lose a ton of weight that is really unhealthy for them - and being so young and smart he didn't want me to experience the potential decline, and being tiny already he didn't think I could afford to lose anymore weight (and I completely agree).

He suggested to try biofeedback. The following week, my neurologist was not thrilled that he had talked me out of the Topamax and believes that biofeedback would take way too much time and attention to get results - and I think he's right. However, back at the neuropsychologist, we decided that Neurofeedback, a pretty new practice, might be the answer for me.

In a few more months, if this neurofeedback doesn't help me as much as I need it to in order to start working and having an income again - I'm going to see what drugs would be best for me, and Topamax might be it. But until then, I at least know that this recovery is expected to take a long time as it is, so a few more months of trying something unconventional isn't going to be much of a loss. Just think of all the things I can gain!

Whoa! Happy dance!!

So that last post - When I spell-checked, I only had two words spelt wrong!!! That's huge!!! And I think it is a little more organized than some back in August?? Maybe... maybe not? I think it's better than months ago.



Granted, I also might re-read it a month from now and be embarrassed if I catch a missed 'to, two, vs too; or 'wear vs. where'... but I definitely caught myself once in a read-over before I posted it! Oh progress... I'll be smart again someday!! I just know it... I can feel it... I have so much hope. That makes me so happy :)


< insert HUGE smiley face here! >




I wonder if it's the new LENS therapy I just started?? I have a feeling it's going to do wonders when it starts to really work!

When your day begins as an Epic Fail, you haven't necessarily failed at Life!

Alright, Tough Boy:

1) Don't be too hard on yourself. If you're not ready to set expectations, it's okay.

2) It's OK to say no.

3) Pay attention to what overwhelms you and think of ways to lessen the impact. IE: Receiving mail. Lessen the impact by having someone else go through it, or putting it aside until the anxiety about it has passed.

4) Take a deep breath and keep reminding yourself that nobody died because you couldn't do something.

5) Celebrate your progress.

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It has been a long while since I have had anything intelligent to say... (ha! and not just here!). Sometimes, well actually quite often, I get easily overwhelmed with the idea of an expectation. If I think I have a good thing to write here - I just get so overwhelmed and end up not writing anything. I can't pin point it on a migraine, on being exhausted, or even having something else to do. I just freeze and I'm really not good at handling any - and I mean ANY - stress above waking up.

Mail stresses me out (paper mail, e-mail, facebook messages). BIG TIME. Paper mail: I don't open it and put it in a bag on my counter... when I'm feeling like I can open/sort through the bag in an objective manner without the attached anxiety... I'll go through it then. There's a lot I can throw out which helps. There's also a lot of things I know I can't do anything about right now but stresses me beyond belief!!

Waiting to go through these letters takes away the urgency of "respond today or die," because honestly - I'm still alive. It'd be ideal to delegate these things to someone else. While you're recovering - your brain stops trying to heal each time stress comes at the forefront. It is a totally different lifestyle than I was used to before my accident, but I've definitely had to remove any and all stress.

Being reminded of how capable I seem vs. what I'm able to do stresses me out. So, I celebrated my one year post-accident a few weeks ago. A friend of mine who I used to tutor in Organic Chem took me out for dinner to "celebrate" the amount of healing and number of obstacles that I've hurdled over slowly. I have a long way to go but I wanted to re-address my perspective to focus on the optimistic "wow, look how far I've come..." outlook. I never thought I would have come so far past the excruciating pain that plagued me for 8 or 9 months. The pain I have now, although obnoxious and still debilitating at times, is far less than even four months prior from today. And for that I'm thankful.

I was about to attempt the first day in over a year that I would plan more than one activity to complete in one day. I failed miserably. I had planned to join a friend at her yoga class in the morning and then I had planned to attend my first support group for 'high-functioning mTBI survivors.' I failed.

I don't know what it was- anxiety, expectations, exhaustion?- I wasn't able to sleep until 6 am, then not able to wake at 730 am. Finally at 10 am, I wasn't able to officially wake up or fall asleep. I had to cancel on yoga. By 1230 pm, I was still feeling overwhelmed and cancelled my trip to the support group. I couldn't sleep and my migraine was prominent. Finally at 4 pm, although still exhausted I felt like I could try to accomplish something. I bought some groceries :) I'll try again in a few weeks...

It's so difficult to come across binders full of post-its, accomplishments, plans, or my resume of a million-and-one activities I could organize and execute with my eyes closed while going to school full time and working on top of that... the contrast to what I'm struggling with now is more than apparent and quite frightening. I miss my superwoman self. Every day is a new day to remind myself that I still have much needed time to improve and recover. Thankfully, I'm still seeing improvements... but it's OK not to be superwoman while I'm recovering. I look fantastic, but these obstacles are real and I can't force them to come back all at once - but they will slowly come back. If they don't, I'll learn new ways - I'm not lowering my standards for myself that easily!

Still Kickin'

Tough Boy:

1) Find a way to connect to people.

2) Focus on one thing at a time.

3) Be patient.

4) Do something you enjoy doing.

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I think I quickly became overwhelmed with the idea of doing something positive from my beyond-negative-words experience with my concussion. This recovery has been kickin' my butt! There are so many things I want to write, so many things I want to share. I got overwhelmed as I made notes about them, or as I was trying new things... becoming overwhelmed is something that happens to me waaaaaaaay to easily these days.

I have a very difficult time dealing with any stress - so much as a single small email I receive - the thought of replying can sometimes be waaaaaaaay to much! This stress leads to a catapult of horrible events in which set me back days and weeks at a time. I have tons to write, tons to talk about, tons to tell people and a zillion ways I want to educate the world about what I've read and found out about what I've been going through. I will get it together eventually! I promise!! But I've had to take a deep breath, and I'll have to go really slow... and prevent myself from getting completely overwhelmed!! And then I'll post some ideas about how to not get completely overwhelmed if I find something that works.

And I'm so glad to hear from BrokenBrilliant! I have a lot to say about things you've written recently - it's just the overwhelming piece... kinda stepped in my way. But I still read everything!!! So glad you found practioners you could relate with... so critical with anything healthcare!

And to Dr. Rutledge (I'm not really sure how to email you... wellsphere looks awesome! But I couldn't figure out your email right away... I hope you look at this!!) - and to anyone else - feel free to feature my blog, mention it, add it to your link list, or comment about it. I hope to one day put enough down to go out and educate all about this relm of mTBI... and this blogging community is such an amazing way to start, to gather feedback, and to ultimately gain ground in a promising direction without failing (hopefully not failing...).


PS. I was reading my last post, because people commented on it (thank you!) And I'm embarrassed to have noticed my spelling mistakes and words I used incorrectly. Ugh. I sound so uneducated! But as I get better I hope to become more fluent in the English language again - I promise I know the difference between to, too, and two; and the difference between the verb 'peek' and the noun 'peak.'

Learning about mTBI

Helpful Hints:

1) Learn. Learn. Learn. Read everything you can about mTBI. After you've canceled out every diagnosis that doctors actually know something about... and TBI seems to be your last hope... READ, LEARN, QUESTION EVERYTHING YOU CAN FIND ABOUT IT.

2) Keep track of what you learn; you might forget later.

3) Find someone you can relate to - on the internet, in real life, in books. Justification for the problems you are facing can help a lot in recovery.

4) Know that you know what you're experiencing is real.

5) When people doubt your symptoms - Read and Learn all you can about what you're going through, and where you might be able to get help from someone who's seen the same problems before.

6) Stay tuned. I'm always reading to keep my brain functioning. If I find something good - I'll try to put it here!

7) I believe you.
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It breaks my heart to read about people with medical issues that are just not recognized. It breaks my heart to see people less fortunate than myself. It absolutely breaks my heart to know I am having these frustrating difficulties and absolutely struggling day to day... and then to pass by people who are visually more disabled than I. It makes me feel selfish. It makes me feel ignorant. It makes me feel needy and pitiful. I feel absolutely ungrateful and dramatized.

How could I stand here absolutely confused and uncomfortable when I am fortunate to have graduated college and live alone? How can I claim my physical strength or my cognitive skills have ceased from a once notable level; I am capable of reading, learning, writing and communicating in a way that I may seem outstanding still? My awkwardness is not often perceived by others and fishing for words is not easily noticed. How dare I feel I need help when I should be helping others??

It breaks my heart that in a time where I need the most help I've ever asked for, I still debate the necessity of putting myself first. It breaks my heart to have isolated myself from the thousands of people I used to know because I can no longer do favors for them or solve all their problems. I have isolated myself because I look so 'normal' and don't have the energy to waste on arguing with the people who knew the 'old me.' I have isolated myself because these people see what I see - other people who are visually more disabled than I.

Lastly, what breaks my heart more than for those less fortunate or my own struggling, I feel so much remorse and compassion for all of the people in the world who also feel lost and frustrated. I might have mentioned this before, but today in my daily "reading" I came across another example of someone going through the same frustrations... only four years after trying to adapt to his changes, had he started learning about mTBI and making sense of his issues.

This guy particularly interested me because he referred to himself as a "high-functioning" survivor. He's intelligent, had always been a hard-worker and persevered. Most takes I've read that are seemingly "most important" around this topic are stories about people who actually needed their head cut open, are now quadriplegic, lost all ability to read and write, or have to rely on other people. Very few instances have I found someone that does not fall into the "severe or moderate" category of their accident. Very few examples have been mentioned separate from those added to 'broad symptom' overviews. Very few have I been completely able to relate to.

He calls himself brokenbrillant; he started a blog with the same compassion I have for others just like him. I'm not sure how long he worked on what he's put down - but it's slightly more organized than mine. And he hasn't written anything since January... which I'm guessing has to do with him pouring so much energy into educating others with his blog that he "just couldn't" do it for a while. No big deal - maybe he'll be back to say more, maybe not.

He has written somethings that I swear I've said outloud and he just wrote the words...

I can’t keep second-guessing myself on my TBI(s), and I can’t give in to people who assume that because I do a really good impression of a normal person, it means there’s nothing wrong with me. There’s a whole lot wrong with me. Inside this head. That I can’t articulate very well with other people, when speaking. And I’ll have to work through this, one issue at a time.

I find his blog particularly humbling. Support groups are wonderful for any disability or particular subset of struggles. Dr. Ed Halowell - one of the gurues in ADHD psychology - started the first ADHD support groups and wrote about the amazing results his first 11 participants... or 16? I don't remember. These people were functioning and a little disorganized but clearly capable to live day to day - but were astounded to relate to others who understood them!

His blog is humbling because I need the support right now. A friend of mine whom I don't see often said to me a few weeks ago... "stop mentioning your problems, talk to me as if you're normal because I don't see or hear anything wrong with you." Although I'm sure his intention wasn't to hurt me, the fact is that I am stuggling. If I don't talk about it and work through it, or find ways around it, I feel lost. It's a big part of my life right now and I need support. I have not had the energy to quite find support groups at this time - but I read about another story of a former PhD in Economics, graduate from Duke and Yale. Her take on support groups:

In Austin, Anne eventually attended a support group. At meetings, she looked around at the quadriplegics and others with severe head injuries and felt fortunate but not always supported.

As difficult as it is for me to 'take time to heal' and to put myself first for once, I need it. And there are other people out there that need it to. I left a comment for brokenbrilliant saying, "for what it's worth, I believe you." I hope to hear from him. And I hope sometime down the road I'll find a ton of other "high-functioning" TBI survivors that will give me another chance to say "I believe you." Because although it doesn't get less frustrating, I know it's worth a lot to be believed.

The who, what, why...

Tough Boy:
1) Use a word processor on your computer to save ideas and unfinished work (I love Word for Microsoft XP). You can go back as much as you want before you send an email or post a blog!

2) Spell Check is a life-saving invention

3) What's the word?? While in Word, right click on the word you're unsure about, scroll down to "Synonyms." If only I could do that while talking!!

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In November I was walking to my “job,” the unpaid rotation in my sixth year of Pharmacy school. I had a presentation that day, which I can’t remember what it was on… but I also had an interview for one of the medical schools I had applied to. I was running my strengths and weaknesses through my mind. I was preparing my presentation of how as a doctor I would love to work in the emergency room, trauma-surgery unit, or become a cardiovascular surgeon.

If you told me that morning before I left my apartment that my entire life was about to change – I would’ve probably said, “you’re right, I’m about to ace my interview and get accepted to medical school!” I would’ve run out the door without blinking at the thought.

That morning, I was hit in the head and my entire life has changed.


As I continue to recover from a world-altering closed head injury, I hope I can find the energy to record some of the "no-brainers" that aren't so obvious when you have no brain... or at least one that isn't working properly.

I have been slowly learning about concussions and mild traumatic brain injuries (mTBI); unfortunately there's nothing mild about them and they are not fully understood.


Too often, when I would try to find out things about what I was going through, I would come across advertising websites. Where they all had great information, they were all saying the same thing. Also, they were all connected to personal injury lawyers hoping to make bank off this “invisible” suffering. That’s all fine and dandy – but if doctors are telling me there’s nothing wrong, I need to find the answers myself… even if it takes me forever. I’m educated enough to look deeper and make sense of what I might find (um... well, eventually). Forever is a dreary time, but when the hope for my future is darker than the present, spending the insane amounts of time and frustration may help me slowly become more comfortable.

I am still not ok. I have a long way to go. I can, however, fake-it-till-I-make-it. I try not to make it an issue with people I am just meeting. I look the best I’ve looked in 7 years - I’m a knock-out. However, the most annoying thing I hear is “Really?? Cause you look great!” They don’t see me every day. They don’t see me when I am on my 6th quiet day spent inside with the lights off; my main goal being to just get to the next day. On my good days I might be able to open mail from a month ago – not saying I read any of the stuff I keep, but I try to throw out the junk mail. On bad days, I really can’t tell you how I have spent my waking hours other than reading “mindless” things online. Two or three sentences, short blogs, horoscopes, updates on the recent Red Sox developments… but I won’t register most of it.

If I decide to go out or when I am going to a friend’s house for the weekend, I feel obligated to push through it, smile and charm, and “be as normal as I can.” I might go days without sleeping and I will be ultimately confused. I try to have VERY minimal light and sound exposure in the days coming up before I have to drive. I try to “rest up” as much as I can to get “energy reserves” so I can better hold conversations, meet new people, be a friend… have a life… in the days that I am down there. Nobody likes a party pooper. And if it ever comes to the question of “what do you do for work?” or “why aren’t you drinking?” I try my best to follow along with what the “past-me” would have said, until I have to tell them I’m actually retarded now. “But you look great!!” Ugh….

I’ve been doing this on my own. I am very smart, and I’m sure I am still above average on many levels. The frustration is with the dramatic change. The part where I have to RE-learn what I’ve been molded to do since I was born. How I group things, how I count, how I view numbers, how I listen, how I read, how I send out my rent check, how I communicate, how I react to others and situations. I look great, I am very smart… but I am not the “me” I had been for the 22 years before my head injury.

There are certainly glimpses of “me,” and therefore leads many people who were acquaintances to not understand what I’m trying to say about my new world and my new difficulties. And some of those glimpses have driven me to want to “figure it out” when everyone else has no suggestions. I read a lot of blogs to pass time. I also read a lot nonsense articles. But sometimes, I come across something that seems so obvious, something that is so much “common sense,” that I am baffled by my discovery.

When you have a brain injury, as discrete as your problems may seem to others, your brain just isn’t able to see the obvious. The confusion makes much of the “common sense” not so common to you anymore. And these “no-brainers” that I didn’t have the brain to figure out on my own – were absolutely some of the best trinkets of advice that took me WAY too long to find.

So this is where I’m going to put those trinkets. For anyone who stumbles on this blog, if you have any trinkets of your own (even if you’re perfectly functioning), PLEASE let me know. It takes me MONTHS to do something that might take you two seconds; any help would be completely appreciated. Eventually, I hope these things can help people that are just starting to figure out how hard it is to find these things on their own… the people who aren’t as fortunate to have the same resilience that’s peaking through from the “old me.” And maybe, just maybe, I can make that difference in this world I had thought I would in the pharmacy world, medical school, or as a cardiovascular surgeon… but maybe I will be able to improve enough to make a difference by teaching the healthcare providers who are treating, and become an advocate for, those who are struggling despite just how fantastic they look.

"If I can dream of a warmer sun, where hope keeps shining on everyone..." -Elvis

No-Brainers for Tough Boys:
1) Laugh

2) Think about laughing

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I've had some lousy past few days. I'd like to explain my prerogative a little, but may not be able to muster the sentences together tonight. But here's a start of what I would like to do...

I will probably write my heart out on something I've found or tips that I feel are helpful for my daily functioning/feeling more comfortable while recovering from a brain injury (Nov '07) that's literally changed my world. Then I will most likely pick out the "important" points to take away and bullet them at the top. Why? Because (on days like today) when someone struggling with the changes of their brain is on an "off" day; sometimes it's hard to register any and every thing they read. Sometimes it'd just be easier if someone said "well, the point of the story was..." or "the only thing you need to know is..." rather than having to read everything yourself. And although I've always been able to write, sometimes I ramble and may be struggling to put words together effectively to make sense.
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So tonight, I was just trying to keep my brain moving on random short articles about... whatever. I have no idea what I was reading for most of the time. There were moments when I would have to tell myself out loud to "read the words!!" It's so frustrating. But then there were a few times when I enjoyed a story and it was short enough (and easy) to read and comprehend.

In relation to struggling with a brain injury - my muscles all around my neck, shoulders and back have been relentless this weekend and will not loosen up. I'm very uncomfortable, dizzy and confused. And I'll save the migraine talk for later. A naturopathic physician that I had seen back in December had suggested a lot of stress might be adding to the pain. He told me to think positively with the phrase, "I'm getting better in every way, every day."

Now in my mindless wandering online, I came across these two brief articles that are kind of exploring the healing and hope in optimism and laughter. Or at least grounds for stress relief. Maybe I'll watch a funny movie tomorrow and see if my neck muscles will take a rest for a bit!!