All You Can Do is Laugh

As I have said before, my brain injury was totally random. I was more or less sucker punched with the crazy symptoms, almost unable to wrap my head around what was REALLY happening. Then suddenly I was being told that I had to have brain surgery, which I definitely didn't understand until after the surgery. So it doesn't shock me that I had no idea what I was in for after surgery. My surgeon told me that I would go to a therapy hospital, where I would be put through the ringer doing physical, and occupational therapy among other activities that would help me. When I heard this, first of all, I didn't understand my physical limitations, and second of all, when I heard the words 'physical therapy' I envisioned myself running on a treadmill, lifting weights, maybe doing some resistance bands. I was a Division 1 college athlete, what do you expect? When I actually got to the therapy hospital reality hit me hard.

I was suddenly very aware of the fact that I was not in a state-of-the-art athletic training center. I was in another hospital surrounded with people who had sever brain injuries. I had done a little therapy in my first hospital, just "walking" and practicing brushing my teeth and hair with my right/"bad" hand. Though I could barely walk, and barely brush my teeth and hair, I still envisioned myself running laps and hand writing a term paper in weeks. That was not so much the case. I had to come face to face with my 'disabilities.' (I really hate using that word because I don't, and have never, thought of myself as disabled). DEaling with my own problems was intense enough but what really made an impact on me was what I saw every day. Every day my heart would break, and every day I had a new ridiculous story. I feel like being in the brain trauma unit of a therapy hospital and being comprehensive is  honestly like witnessing a different world that many don't even know exist!

Therapy Hospital - The Saga Begins

View from my room at my therapy hospital

I arrived at the therapy hospital in complete shock. Like I said, I had no idea that this was what it was. I thought I would get right to work doing therapy...not so much. I was put in my bed that was next to my new roommate's bed. The only thing separating us was the same type of hospital curtain you see at any hospital. She wasn't there when I got there as she was at therapy, but in her absence disco music was blaring from a little radio next to her bed. I was immediately worried. I was told that she was an 80-something year old woman named Connie who wasn't completely 'with it.' Aaaand more worried. I never REALLY interacted with Connie, but I came to LOVE listening to her!

Connie was hysterical. No, she wasn't really with it, but she was cognitive enough to talk to everyone who interacted with her. Every morning when the nurses would come in and get her ready for her day, they would obviously move her around, getting her washed and dressed, and I would hear her from the other side of the curtain saying in a thick Long Island accent, "Aaaah take it easyyyy! I'm an old laaadddyyy!!!" and when the nurses would ask her something, like what shirt she wanted to wear, or if she wanted to eat breakfast, she would always reply with, "oh whatevaah!"

One day, one of Connie's daughters was there (who were both wonderful women) Connie was kind of babbling, not saying anything sensible, she suddenly broke out into some sort of Italian song. It was actually pretty amazing that she pulled an entire song in another language from her memory during a moment where it seemed like there wasn't a whole lot going on. It was also quite cute.

Every other day, a doctor would come into the room and do mental exercises with Connie. I felt so lucky when I was in the room when this would happen! It was usually an exercise where the doctor/therapist, would read some sort of sentence or catch phrase and Connie would have to fill in a word. Normally, she was very good at this. The therapist would say things like "Ok Connie, finish the sentence: the radio isn't loud enough; please turn it..." and Connie would say, "up!" Connie got really good at this little game, advancing to harder sentences. Some would say that Connie just couldn't handle this exercise very well, but I kind of think that maybe she was just messing with the therapist. One day, the therapist said "Connie, finish the sentence: Jack and Jill ran up the...."  and Connie finished the sentence with,"Tunnel of loooove!!" another time, while playing the same game, the therapist said "It is raining cats and...." and Connie replied "Paaancakes!!"

Connie left to go to a less intense therapy hospital after about 2 weeks of me being there. I was honestly sad to see her go. I didn't know this at the time, but she was the perfect hospital roommate. She slept through the night, didn't say much, and when she spoke up, it provided me with such entertainment! My next roommate, honestly bless her heart, wasn't quite as low-maintenance (more on that later).  Connie, though she didn't know it, helped to keep my mood light in a time that I was starting to sink into a dark hole.

I could write a book about my experience at therapy hospital, from people ODing on drugs, and trying to commit suicide, to people who just had awful, life hanging things happen to them.  I also witnessed things that were probably ultimately sad (more on that in another post!), but really, all you can do is laugh.

Always Up for a Challenge

It has been almost three years since I had brain surgery. Sometimes I can't BELIEVE it has been that long, and sometimes three years seems like no time at all. When I think about what really happened, and where I was to where I am today, I am almost impressed! But I didn't get to where I am today by just doing an hour of therapy 3 days a week. That is what I started out doing, sure. But soon, I was just itching to work out. I am, and always have been, a naturally physically active person. I have always liked "the burn" when I worked out; I love pushing my physical limits, breathing hard and sweating. It is the ultimate release for me.  I admit, this is something that not everyone is born with.

My brain injury essentially stripped me of every single natural physical ability I seemed to have. But in my head, with every thing that I have ever done since my injury, my attitude is that, "I'm an athlete; I can do this." This attitude can both elevate me, and absolutely devastate me. To go from a place where something is easy and natural, to a place where the same things are now excruciatingly hard or seem nearly impossible, is one of the hardest transitions I have ever had to make. But like many things, I could only cry about it for so long.

The first workout I did on my own was the Nu Step. I got bored with this very quickly but kept going just to feel like I was working out. Soon, I started going to the pool, which was a dream. In the pool, I almost felt like myself again.  I worked on strength with water weights, and natural water resistance, walking, and even did some aqua jogging. During this time, I got rid of my wheelchair. Between the Nu Step, pool, and weekly physical therapy I was feeling better and better. But it still wasn't enough for me.

Nu Step machine!!That is not me; I don't think I ever looked that pleasant on it.

I will start off by saying that I am very lucky and blessed that my father worked where he worked. At the time, he worked with a college football team that had an indoor practice facility was a huge, beautiful place housing a field turf football field. In the evenings, I started going there with him where we would do all sorts of activities from 2 footed jumping down the hash marks, side to side shuffling, back pedaling, even some jogging (until I couldn't stop hyper extending my knee and it got a little dangerous). I felt so good!! I felt like I was really working and that I was getting stronger and more stable. To this day, I credit those workouts to kick starting my real recovery.

While working out in the practice facility, I caught the attention of the football strength staff. The head strength coach, Mike, approached me and offered for me to come to the weight room and workout with him one day. He had been working already with an incredible guy named Brock, the brother of one of the players, who had been paralyzed from the waist down in a tragic car accident. He was getting Brock to walk again. You don't often see something like that first hand, so naturally, I was impressed. I went in the next day to work with Mike and within moments he was testing how I walked and had me doing squats with a weighted vest (I did have spotters!). I could tell, in that moment, that my world was about to change. From that day on, for about a year, I went in to the weight room for 2 to 4 hours a day, 5 days a week. Within that year I can't even tell you how much I changed both physically and mentally. I was pushed beyond any limit I had. The change in how I walked, held myself, and moved in general was outstanding. Not only that, but Mike and his staff made me feel like I was a part of a family. I had friends my age that saved me physically and mentally.  The girl that worked with me every single day, is one of my greatest friends of all time.

I can't stress how important it was for me to not only work out, but to be pushed so that I noticed myself getting better and better (which means more and more normal). It gave me confidence; it gave me the release I needed; it gave me what I really needed - it made me feel like me! When I moved back to NYC, I took the lesson that working out truly helped get me better and worked out for a couple of hours 5 days a week, and still do it today. Yes, a lot of my natural physical ability was taken from me, but I am still an athlete, and I can do just about anything!



I will post more on my actual workout's soon!

To read more about Brock Mealer and his accident: http://sportsillustrated.cnn.com/2010/writers/the_bonus/08/31/brock.mealer/index.html

To see Mike's facebook page, visit https://www.facebook.com/BarwisMethods

Let 'em Look

There are many things that no one can remotely warn you about when you are dealing with a TBI (Traumatic Brain Injury). This is partially because no one really knows as every brain injury is different. However, many TBI's are going to make one look and/or move differently.  I went from being in a wheelchair with an eye patch to walking with a limp and moving my right arm in a funny kind of way. Basically, I went from a tangible injury (when you're in a wheelchair and wear an eye patch most people just know something is wrong and don't really look or ask questions) to one that no one could really pin-point. Some days are better than others, but even on 'good' days, when I think I am waking like a normal person, I will see someone staring, perhaps trying to figure out what is going on with me.

Me in my wheelchair at the hospital sans eye patch

At first, when my 'good' days were much worse, but I was able to walk on my own and wear no patch on my eye, I would notice that people would stare, often for too long, obviously trying to see some sort of indicator of what was wrong. For a while, I was quick to be very defensive about this, giving a dirty look back, or asking "WHAT?"  throwing my arms in the air like I was on the show Jersey Shore or something, making them look away. I wanted to scream at them that I was FINE or that "I JUST HAD BRAIN SURGERY!! IS THERE A PROBLEM YOU HAVE WITH THAT?!!" Luckily I did have some self-control. As I improved, people would sill stare but I was able to  ignore it, or give a small indifferent smile, indicating that I knew they were watching me.  As my walking got even better, I could tell that I looked semi-normal (which is a major goal) because people would often stop me or come up to me and ask if I was ok, indicating to me that they thought I had the capability of walking normally, I just wasn't. Again, at first my reaction was to be defensive and sassy answering, "yeah I'm FINE. Are you?" But one day I was struck with what I think is the Truth.

There was no reason for me to lash out even though it's easy. I am self conscious. That is just a fact. It's easy to assume that people are criticizing me the way that I criticize myself but they are not. They are most likely genuinely concerned, or honestly being nice, even just polite. No matter what, it comes from a good place. Because of that realization I have learned to be gracious and polite back.  When someone asks if I am ok, I smile, tell them that I am, and thank them. 

Sometime's people get very curious and just ask what happened, which I am more than ok with talking about (nothing to hide and they asked!) Other times many think they know what happened and will approach me and simply say, "leg surgery?" or "hip surgery?" and I just smile and pleasantly say, "No, brain" because that usually shuts them right up.

Scars Make You A Badass

"...please agree with me that a scar is never ugly.That is what a scar makes us want to think. ... We must see all scars as beauty ok? This will be our secret. Because take it from me, a scar does not form on the dying. A scar means I SURVIVED."- Chris Cleave, Little Bee

Staples in after surgery. These ran all the way up the back of my head

Staples out! A few weeks after surgery

This is my scar recently; you can barely see it!

Dependency is the New Black

I have always taken pride in my own independence. "Doing my own thing" was my normal. I always kind of strayed from the crowd a little bit, and have alway valued my Alone Time. I even ended up making the move to New York City on my own and flourished for almost 7 years. I loved the feeling of being on my own. So when this whole brain injury thing went down I was essentially stripped of that ability.

When I was in the hospital, I had no choice but to let others help me. I couldn't stand up let alone feed myself and brush my own teeth. Nurses (some of the best people on Earth), therapists, my mom (another one of the best people on earth), and my sister (yet another one of the best people on Earth) helped me eat, did my hair helped me stand, sit, shower, and helped with ALL of my hygiene rituals (no need to explain any further)  When I was in the hospital, regular and therapy hospital, I easily accepted the help because I was in a situation where I knew I was supposed to welcome it. It was when I got home that relying on others became a foreign concept.  

My angel of a sister helping me stand in the hospital 

I suddenly felt awful watching my mom carry my wheel chair up and down the stairs, in and out of the car. It was NOT ok with me that my mom had to pull my hair back every day! I wanted to do things for myself.

I think the lack of self-sufficiency was a driving motivational factor in my recovery. In a matter of months I ditched the wheel chair. I made myself walk short distances, always holding onto something, and my wheelchair was always right by me just in case. By applying balance techniques I learned in therapy, and honestly just challenging and scaring myself, I was able to push myself further and further. Keep in mind that I looked nowhere near pretty or graceful while doing this. But I got rid of that chair!

I also taught myself how to pull back my hair. This was honestly done by practice and patience. Please know that this was an incredibly frustrating process but now I'm a pro at pony tails and when I want to class it up I even can do a bun! Here is an unflattering step-by-step process of how I do a pony tail

the hair tie is around my "good" fingers

place hair tie around "bad"wrist

gather all hair (this alone takes practice and training)

gather all hair into the middle of head, get "bad" hand to grasp all hair and keep it there

with "good" hand, grab the hair tie that is around the "bad" wrist

pull hair tie while still grasping hair

maneuver hair so that it loops through the hair tie

twist hair tie with "good" hand and place it around "bad" index figer

stretch hair tie

train hand to twist hair tie so that it can be placed around thumb and index finger of "good" hand

while the "good" hand is holding hair and hair tie, train your hand to put  the index finger and thumb of the "bad" hand to go through the hair tie and grab the hair (this is quite hard and requires much patience and practice)

pull hair through and voila!!

I was able to move back to New York City on my own and everything I did was a challenge and definitely frightening. It pushed me well beyond what I thought I could do, but it was the best

decision I ever made. I finally felt independent again. 

The bottom line is that I am never without help. I still don't drive (just one reason why New York was so great for someone like me - no need to drive!) I rely on my gracious friends, family, and husband for rides everywhere. Among many other things, I have to count on on either a railing or a person to get up and down stairs; I very often grab people's arms when walking over any 'rough' terrain, and I ask other people carry things for me all of the time.  I basically HAVE to rely on others so that I can be independent. 

Of course I get frustrated! I want to cry (ok I do cry) sometimes. It's not easy! The lack of personal freedom borders on awful a lot of the time. I long for the days when I can just do exactly what I want when I want to any moment. But I always keep in check how lucky I am. It's ok to ask for help. Not only is it ok, but it's a really good thing. How else am I going to get better? I need help, and people want to help. Don't get me wrong, I still strive for my own independence every day, but turning to someone to help me accomplish that is just fine. My next step is getting behind the wheel! Who wants to go on a little ride?

Medical Mumbo Jumbo - An explanation of what happened

In my late 20's, I suffered a random traumatic brain injury, diagnosed as a Cavernous Malformation in the pons region of my brain.  I think of the pons region as the epicenter of the brain - all signals basically pass through there. In laymen's terms, I had a bleed in my brain stem. Symptoms began occurring out of the blue, and it changed everything I thought I knew about life.

The entire right side of my body is essentially numb with very little proprioception (knowing where you are in space). I'm not just talking just my arm and leg; it is if I have drawn a line directly down the center of my body, splitting myself into two, and the ENTIRE right half of me is numb. I was also diagnosed with ataxia, which is a term few seem to be aware of. I think of it in that my cerebellum was messed with, therefore I have little balance and awkward, almost jagged movements with the muscles on my right side making control a bit of an issue. My fine motor skills are severely lacking which means a lot of the time (now) I am typing with one hand. I fondly refer to my right arm and hand as "righty." Righty can be crazy, knocking over things I don't even know I have knocked over, or grasping a LITTLE too hard often crushing plastic bottles or other people's hands. 

On top of a myriad of other symptoms, another main problem is with my eyes. The problem is not with my actual vision (I have almost perfect vision) it's that I often have double vision and a nystagmus in both eyes, causing everything to move around as my eyes don't stay still in my head. This tends to be a problem. You will often see me closing one eye to read small print, or try to see something at a distance. Once I was trying to read a menu that was printed on the wall behind the register at a restaurant. The guy waiting to take my order said, "are you closing one eye? Ha! That's awesome." Is it? Really? I think not.

Yes, I walk funny, and move my arm in a way that doesn't seem quite right. I can't freely look around at the scenery when I walk, and many times if someone at a short distance is waving I cannot see them and have no clue who they are (if it was you, don't take it personally). I will write messily with my left hand or ask someone to write for me. It's difficult for me to stand up out of a chair or navigate my way around any sort of obstacle. But I am still me. I still have the same sick sense of humor; I still watch way too much bad TV; I eat like it's my last day on earth at every meal; I have the same love of fashion, art, and music as I always have. I love working out and challenging myself (both of which have worked to my advantage) I still have a hot temper and sometimes little patience, mostly with myself. I just operate much differently. I have a much greater tolerance of those around me, and a greater appreciation of life. I want to be treated the same way that I always have been. I just might need a little more help.

Life As I Know It

I am sitting here writing this as a newlywed of just over a month and now live in Memphis, TN with my husband. I live what appears to be a normal existence. Don't think that it hasn't taken me a long time to get here though. Through years of hard work, my stubborn attitude, and an incredible support system, I have been able to battle my way back to "ordinary living."

I am fully aware are grateful of how lucky I am. I do not, and have not, suffered the way that many with brain injuries do. In some cases, some say that I have it easy (though not one part of it has proven to be easy yet). I am not here to tell anyone how simple this is to live with - because not one part of it is - nor am I here to say that all brain injuries are the same and my way is the best way to deal with things. I am here to give a glimpse into my life, as someone who is living day to day with a traumatic brain injury the best way I can, and sharing the things that help me cope.