10.

Originally written in April 2010

I have recently decided to look at the pictures my Mom took of me in the hospital (many of which you are seeing on this blog). I asked Laura, Kate, and Caryn to be here with me while I see the photos for the first time. Kate came to Hawaii and saw me in the hospital so she knew what to expect. She showed a picture of me in the hospital to Laura, Laura said it made her cry. I don't expect that they will be easy to see but I am hoping to use the photos as a motivational tool. I no longer see the improvement that other people point out to me now.  I made big strides quickly in the beginning of my recovery and the doctors and therapists warned me that things would slow down considerably at some point.  I am thinking that if I see where it all started I will be able to see how far I've actually come.   I do think that I should mention just how amazing these ladies are to come and stand by my side while I looked at some very gnarly pictures from my time in the hospital.  Caryn was in a horrible accident years ago and viewing these photos must have been especially hard for her, yet she was there, she looked at the photos and she encourages me to keep working.  She knows exactly what it takes to fight your way back from an accident.  Here is where I will say, I am so grateful and so thankful to have a solid team of great friends to stand beside me during this trying time.  I will keep working at getting better and I promise you that someday ,in the not too distant future, we will look back at this time and be amazed that we had to face such a crazy obstacle.

Recently I began looking at my situation in a little bit different light, I stopped saying "IF". If I work again, If I drive again, If I live on my own again... I simply started saying "WHEN". When I work again, when I drive again, when I live on my own again - I believe these things will happen, the brain heals at its own pace so now I just have to be patient and wait for the healing to be complete. Anyone that knows me knows I am not great at waiting, but they also know that when I get an idea in my head I will do my damnedest to see that it happens (go to culinary school, get a good job in my field of choice, move to Hawaii, keep up with friends, get a tattoo - or 4). So I am saying wait and see, watch me continue to make improvements and get my life back in order. I am determined to make believers out of anyone my life or my story comes in contact with so wait and see what happens.

I am getting positive feedback from my physical therapist, which is making me feel somewhat invincible.  Its nice to hear that people still see the improvements that I no longer see.  If I can keep believing that my own version of therapy-at-home is making a difference then I might just be able to continue getting better.

9.

Originally written in April 2010

Recently the topic of dating again has come up, I don't even know where to begin. I was never very good at dating to begin with.   As far as me dating again, I just don't see it happening. The last time I successfully dated a good man I was in high school - and yes, my dating history is really as pathetic as it sounds.  I cannot imagine meeting someone, explaining my injuries, and then having someone subject themselves to the questioning, expectations, and the pressures from my friends and family. I think my friends and my family are amazing and anyone would be lucky to find themselves in the company of my homies... at the same time I know there is a defensive wall built around me and I don't think that many men will willingly scale that wall.  I do know that it would be hard for me to trust again, hard to believe that someone will show up when they say they will, hard to rely on them to drive me from place to place safely, hard to believe that anyone would be willing to put up with the restraints of my head injury.  I think that it would take a hell of a guy to make me feel safe, I think that I will be so much more cautious about who I let into my life now.  I will have to truly believe that my safety and my comfort level will be carefully considered before I trust anyone with my well-being.  I move more slowly than I used to, my voice is different, its hard for me to stay on the phone for any length of time, I have to concentrate much harder on simple things,etc. etc..  I guess as anything - time will tell. Wish me luck and hope for the best!

8.

Originally written in April 2010

I got great news recently - back to therapy for me! My insurance switched tactics and as of April 1st they have erased all therapy received in 2010 and allow you 8 visits of physical therapy and 8 visits of occupational therapy without having to get pre approval. Yay! So I am back at it once again and it looks like I have improved once again, can't wait to feel like I have a good handle on my fine motor skills again!

I spent the day yesterday with Laura, it was so nice to just hang out with a great friend for the day! We walked on the beach, went to lunch on the boardwalk, went back to her apartment, watched a movie, got a pedicure, went on a hot date to World Famous - what a day! Every time I spend time with my friends it reminds me how lucky I am that I have such great people in my life, I know I wouldn't have recovered this well, this quickly if it weren't for my beautiful support team! Phone calls and plans for future outings keep me going, I am so blessed to have busy people make time for me and wish me well in this LONG recovery process.

Lauren had these Team Nikki shirts printed while I was in lala (coma) land. Every time I wear mine I am reminded of the love and support from my friends and family, and it pushes me to work that much harder to recover.  Plus, my shirt is pink; how could I not love it?

7.

originally written in April 2010

I have stayed in touch with several of the people from the Rehab of the Pacific, they asked me to write an article about my recovery for a newsletter to be distributed in March. This is what I came up with:


Nikki's TBI recovery story


"I remember realizing I was in a hospital, and I saw my Mom which made me know I was safe. I remember all the different therapists and the doctor from the rehab hospital but I had no idea why I was there or how long I had been there. The story goes something like this: I was a passenger in a jeep and somehow I was ejected from said jeep. I broke 4 ribs, a lot of the small bones in my face as well as my left clavicle. Lastly, I suffered a Traumatic Brain Injury. I was taken to the Kona Hospital on the Big Island following the accident but it was determined that I needed more help than they could provide, I was life flighted to Queens hospital on Oahu. I endured three weeks in a coma and several more weeks of semi-comatose behavior. There is a large void in my memory surrounding the accident and the beginnings of my recovery. From what I understand I was polite and not too difficult. I was transferred to the Rehab hospital of the Pacific, also in Oahu. I know that I am lucky that the medical professionals and therapists assigned to my case were all determined to help me get better. I now have a vision deficit, my vestibular system throws alot of curve balls my way. My balance has been greatly affected and I am diligently working to re-train my brain to function in my new life. I much later heard the story of the accident that changed my life. I am so grateful to my family and to the friends (who are now considered family) that gave of their time, thoughts, prayers, and energy because without them I honestly don't know if I could have made it this far. I am so grateful that I do not remember the car accident that landed me in this mess. I do not want to be afraid to be a passenger in a vehicle. Hopefully one day I will be able to drive myself again.
How has life changed? How hasn't it. I try not to zero in on what I have lost but appreciate what I still have. Of course things like medical insurance and social security disability make it a challenge! I no longer live on my own, I no longer make a salary for doing a job that I love, I speak slower, my voice is different. I have to concentrate to make sure my body functions in a somewhat "normal" fashion. I can walk, talk, see, hear, taste and try to do better. It has been a personal battle just to get here and I want to go further. I want to go back to working a fulfilling career, I want to drive again, I want to live on my own again. I want all of those things yesterday, and I want for this nightmare to have never happened, but it did and now its my duty to do everything I can to get better. Now I wear glasses which means I can see where I'm walking, I don't run into things, and I won't injure myself by cooking in the kitchen (the dangers of sharp knives and heat are greater for anyone with a TBI). It's shocking to me that once upon a time I didn't have to do things so slowly, that it was just second nature to do simple things like walk one step down into the garage, cross the street, exercise, concentrate for long periods of time. I very recently hit the six month anniversary of my accident. I do not know what my future holds and I can honestly tell you that I am tired. I am tired of fighting this uphill battle, I am tired of having to try so hard, but this is my reality. All of the broken bones have healed - there are thankfully few scars. I do have one shoulder that still causes me pain, but I am working on that with my doctors. I had to stop going to the brain injury rehab program in December because my medical insurance didn't think I needed anymore therapy. I was also recently denied social security disability. It infuriates me that people that have never met me have any modicum of control over my life. They say I'm disabled, just not disabled enough. What I need right now is a little help, I'm asking for a little monetary assistance to help ends meet while I fight this battle. What really infuriates me is that I was a contributing member of society, I worked, I voted, I paid taxes. Now I have to jump through innumerable hoops to see if I qualify for things. My family helps me fill out crazy amounts of paperwork, I am assigned to see doctors who are strangers to me yet they have deciding powers. What I want for myself is a quality of life comparable to the life I led before. I will accept the changes that come along but I don't have to like it. For now I can work hard and hope for more. I believe in the power of positive thinking and I will persevere...watch me".

Supposedly, this story will be printed in a newsletter at the Rehab of the Pacific.  Once I get this blog posted I would like for my therapists at the Rehab of the Pacific and at the Brain Injury Program at Scripps Encinitas to be able to access my story to possibly inspire anyone who is at a different stage of their recovery.  Recovery is possible, it seems huge and unattainable but trust me, with alot effort and endless amounts of hope you can get better!  I do realize that I sound like an after school special but I am living proof that although things may seem unattainable, reach a little further and I think you will be amazed at what can happen.

6.

I was pre-approved for 30 days of the Brain Injury Day Program. After the therapists assessed me,it was suggested that I would need about 6 months worth of therapy. Yes, you read that correctly - I was approved for 1 month of treatment when 6 months would have been more beneficial. I have received individual sessions of therapy to include speech, occupational & physical therapy. Therapy has been sporadic but at least it is available. My medical insurance has to be asked for an extension each time the pre-approved amount of time has expired. The first time the the 30 days expired we appealed to insurance for an extension, it was denied. We appealed again and 2 months later I was approved for 8 more sessions.

I should also say that insurance has covered ALOT, I received the medical attention I so badly needed and they do try and work with me to see if there are any ways they can get more therapy for me. Insurance can be both God-send and extremely frustrating. My insurance coverage was great while I was in the hospital, all in-patient treatment was well covered. The weakest and most frustrating thing about my insurance plan is the out-patient services. My particular policy had no coverage for the comprehensive outpatient brain injury therapy I needed and they do not recognize cognitive therapy which is a cornerstone for healing from a brain injury. My case managers were resourceful and exchanged my nursing home benefit (which I did not need) for 30 days in the brain injury program at Scripps hospital in Encinitas.

Explain to me how you can look at me , listen to me speak , and watch me struggle with the simplest of tasks all the while seeing photos of my former-life and hearing stories about my life prior to this accident yet deny me the best chance for the most recovery by denying any extension to my time at the Brain Injury Program. Explain it to me and I will do my best not to call you names - I can't make any promises though. I can promise that I won't laugh at your mistakes, I promise that I will do my damnedest to not wish this struggle of recovering from a traumatic brain injury on you. I will tell you this: if someone in front of you is walking slowly and they don't have any outward signs of an injury don't be a jerk to them, they might have a brain injury or any other number of things affecting their speed of walking or coping with day-to-day duties. I don't intentionally walk slowly through the grocery store, I simply can't go any quicker and my vision was affected by hitting my head so hard, it takes me time to figure out if what I am seeing is real and it takes time to figure out if the floor is really moving in waves. I will tell you this, if someone near me is intentionally being an ass I may slow down just a little bit more because it is rather fun to see a person (who is fully capable of doing everything for themselves at a normal rate of speed) be an ass just to be an ass or because they think that they are so much more important than everyone else - I'm just saying before you judge anyone else, take a look at your own behavior, kindness never hurt anyone and you just might make the world a little bit better place to be.

5.

Finally, I started talking, no one knows why I was so quiet for so long, that's just the way it turned out. I had constant therapies for several more weeks, can I just say that 11 weeks in the hospital is a really long time! They finally allowed me to be released from the hospital on October 19, 2009. We flew back to San Diego and I started the Brain Injury program at Scripps Encinitas hospital on October 21, 2009. I can honestly say that I was very nervous because I had no idea what to expect. I was looking forward to getting the therapy I needed but I was nervous about telling my "story" - admitting that I needed help and I couldn't do it all on my own seemed much scarier at that time. The Brain Injury Program is brilliantly put together, the day-long program starts at 9:00 a.m. and ends at 3:30 p.m. The day is filled with multiple therapies (physical, speech, occupational), projects, and outings. I was comfortable there because I was in the program with other people facing some of the same challenges. I was also comfortable because your story was just that, yours. It was yours to tell if and when you chose to.

Beginning stages of recovery

Walking the hospital halls

working with ankle weights in the therapy room

it looks like were dancing...but were not!

learning just to sit up again

4.

Time crept by and I was showing signs of wanting to come back from wherever it was that I was in comaland. I thrashed around in my hospital bed and got bruises on my legs from kicking the sides of the bed.

My Mom spoke to me, told me I was safe, showed me pictures of our family and simply let me know that I wasn't alone and I had nothing to fear. I did eventually get transferred from Queens Hospital to the Rehab of the Pacific. Therapists worked with me to allow me to become more mobile, even though I had yet to utter a single word.

I did manage to prop my feet up on anyone who would let me and/or sit on anyone who was unfortunate enough to be standing near me or behind me when my legs began to tire. Which should be embarrassing but really, its pretty typical of me. Apparently I felt that I was ready to have the neck brace removed. Of course, it was difficult to express my desire to be free of the cumbersome brace, seeing as I wasn't ready to speak yet. I tried to pull it over my head, I tried to pull the brace off completely by unlatching the sides ( they got smart and taped me into the brace), yet through all of my antics I didn't pull at the tracheostomy or my feeding tube - yay me. I think the doctors were trying to get me to speak by leaving the cervical collar on as long as they did, they had yet to figure out that I have a huge stubborn streak. Somehow, without talking, and with a small amount of stalking my doctor, I did manage to let them know that my neck did not hurt and they finally took the brace off - hooray!

1.

You may wonder how I came up with the name of this blog, for awhile I referred to my injury as "Scrambled Brain".  Following the coma everything was scrambled, my walking, my talking, my thought process, my eyesight, I do mean everything! I think that the word souffle is much nicer than the word scrambled and seeing as I am a former pastry chef, "souffle" just makes sense in my world, as well as in my own humble opinion... a souffle tastes better than scrambled anything. 

I started writing this blog in April 20010 but I wasn't able to post it right away for fear of not being approved for services such as social security disability or therapy permitted by my insurance company - I know it is smart to hold my tongue and not say what I really want to say to them, ultimately I know that these are businesses and they are trying to do their jobs - I don't have to like them or their ridiculous decision making process.

Kona Brewfest Pipeline Porter Chocolate cupcake with Bailey's Icing

Sheraton Keahou Bay Chocolate Cake

Vnilla Scented Belgian Waffle Strawberry Shortcake

New York Cheesecake with Mascarpone Icing, Vanilla Bean Scented Orange Segments and Fresh Mint Compote 

[soo-FLAY]



A light, airy mixture that usually begins with a thick egg yolk-based sauce or puree that is lightened by stiffly beaten egg whites. Souffles may be savory or sweet, hot or cold. Baked souffles are much more fragile than those that are chilled or frozen because the hot air entrapped in the souffle begins to escape (causing the mixture to deflate) as soon as the dish is removed from the oven.

Think about the brain as a baked souffle' that has just been removed from the oven...it always helps me to put things in perspective if I think about them as a food item. Yes, I am aware that I have issues...

I don't remember the first several weeks after my accident, but what I now know I have learned from family, friends, nurses, and my mom's notes from the time of the accident. Apparently I was a passenger in a jeep, I was somehow thrown from said jeep and thus begins my incredible journey of fighting back.  The accident was on the Big Island of Hawaii, where I had been living for 2 1/2 years. Following the accident I was taken by ambulance to the Kona hospital where it was determined that I needed more help than they could offer. I was life-flighted to Oahu and ended up in the neuro-ICU at Queens Hospital. It turns out that I knew one of the EMT's on my ambulance run in Kona, I hadn't seen him in years and didn't even know he was living on the island, but he recognized me and held my hand until he was no longer allowed to do so. In general I am not a very religious person but I do believe in miracles, and thanks to Ryan and numerous medical professionals I am here today to tell you about mine. The accident left me with several major injuries: 4 broken ribs, a broken left clavicle, most of the bones in my face were broken, as well as two skull fractures and a traumatic brain injury. As if that weren't enough I was in a full coma for 3 weeks (not medically induced), and deemed semi-comatose for the next 5 weeks. Over this time the ribs and the facial fractures healed but I was still unable to speak and tell the doctors what hurt, from the very beginning I was placed in a cervical collar (neck brace) to protect the spinal chord and neck from any more potential damage - although they were uncertain what damage had already taken place.
 
 

Book quotes: Family experience

I cannot express to you how badly I feel about putting my family through such hell.  No, I did not intend for this to happen and yes, it was an accident but I can still feel bad that I was the source of their grief and unhappiness.  I am grateful and I feel blessed that everyone gave every ounce of love and compassion they could.  I know I am loved, and that is a gift that I will be forever thankful for.  My mom took alot of pictures of the process for me to look at later if I wanted to. I am so glad that everything was documented but I am sad that there aren't any pictures of me with my mom during that time - she was too busy being the one behind the camera!

Jamie & Nate's rehearsal dinner, 2008

"The magnitude of the story and how our family's experience would touch a chord. ...but with countless others who had suffered grave injuries and fought hard to recover."  In an Instant: A Family's Journey of Love and Healing, written by Lee and Bob Woodruff.
I know my mom has found grace in other care givers stories.  She has been able to feel like she has made it to the other side of a huge wall of grief, I hope that I can continue to make her proud.  I hope that she knows I am eternally grateful for the sacrifices she and my dad made so that I was never alone in the hospital.  I also think that she needs to know that I am fully aware that I would not have recovered this well or this quickly without my amazing family.

"It was easy to hear the word injury and assume that meant it would be a matter of weeks before things knitted themselves back together. A sane person, a person whose mind was not in the zone, would have taken one look at Bob and wondered if he would survive, let alone ever function again."  In an Instant: A Family's Journey of Love and Healing, written by Lee and Bob Woodruff.

"Remember, love is in the guts and the rest is in the brain."  In an Instant: A Family's Journey of Love and Healing, written by Lee and Bob Woodruff.

Gifts and photos at my hospital bedside

"It's sad," Dr. M said. "It's sad what happened to you and your children, but iv'e never seen one family yet who didn't rise to the occassion. People love you and will support you. People put one foot in front of the other every day. They figure out how to do this."  In an Instant: A Family's Journey of Love and Healing, written by Lee and Bob Woodruff.

"Those pentagons represented the two halves of his brain. One contained the love he felt for his family and the gratitude he had for being alive; the other side was the tempest, the horrible raging fear and disorientation that lived in his brain right now, as he tried to make sense of his new world."  In an Instant: A Family's Journey of Love and Healing, written by Lee and Bob Woodruff.

"I had been on go mode, always moving forward, making decisions, not allowing myself to feel very much."  In an Instant: A Family's Journey of Love and Healing, written by Lee and Bob Woodruff.

My family was definitely on "go-mode" during my hospitalization, hell - we are all still in go-mode.  You just go, one foot in front of the other and before you know it a week has gone by.  Are things normal yet?  I think I will always be looking for my world to "normalize".

"We've all endured a crisis. And we've survived to feel the miraculous force of recovery at work. What I do know is that I haave been blessed. I have been very, very lucky - "  In an Instant: A Family's Journey of Love and Healing, written by Lee and Bob Woodruff.

"I cannot imagine what it must have felt like to hold my hand, praying that I would wake up and someday recover."  In an Instant: A Family's Journey of Love and Healing, written by Lee and Bob Woodruff.

Jamie listening to my ipod with me

Daddy's girl...always will be

Book quotes: laughter/jokes

"People responded to tragedy in so many different ways. I would lead the charge with my offbeat sense of humor and somehow, by doing that, give everyone permission to laugh. Laughter would keep us sane, it would provide relief. Even laughter was a tiny way to take action."  In an Instant: A Family's Journey of Love and Healing, written by Lee and Bob Woodruff.

"Gallows humor has its roots in the quest for sanity. When the situation is so black, so dark, that grief or fear threatens to overwhelm, there is nothing like a good joke or two to resuscitate hope."  In an Instant: A Family's Journey of Love and Healing, written by Lee and Bob Woodruff.

"We made it impossible for him to take himself too seriously." In an Instant: A Family's Journey of Love and Healing, written by Lee and Bob Woodruff.

My hair was braided by the nurses, I was still in a coma so I didn't get the opportunity to laugh at my new look or refer to the do as my "Coolio braids".  I will say that Laura, Kate, Caryn and I got a good laugh over this picture the first time I finally looked at the accident photos.

"No matter how black the hours, light, laughter, and feeling will slowly begin to trickle back one day."   In an Instant: A Family's Journey of Love and Healing, written by Lee and Bob Woodruff.
I am pretty proud of how I have adapted to this new life.  Proud of everything except flipping off a health care professional, flashing anyone who happened to be unfortunate enough to be anywhere near my hospital room, sitting on anyone who was helping me learn to walk again  - which apparently tires you out quickly and the list goes on and on.  Luckily my family has a great sense of humor and were able to laugh when I pulled any antics. I am also grateful that I did not loose my sense of humor, I am still able to find quirky things interesting.  I am definitely able to laugh at myself when I do or say something odd, my family gave themselves permission to find joy where they could, to laugh at something they thought I would have gotten a kick out of.  I have also found that it is easier to get through the day at therapy if I allow myself the opportunity to laugh while I am there, more than likely I am laughing at myself but every once in awhile I find the funny in someone else.  Luckily I have a solid relationship with my therapists and I can share my thoughts and/or observations with them.  Seriously, when a grown man is having a drama-geek melt down how do you not laugh?  I wasn't laughing at him, I was laughing at the situation.
 
"Sometimes it was easier to operate on blind faith." In an Instant: A Family's Journey of Love and Healing, written by Lee and Bob Woodruff.
Every once in awhile I  catch myself feeling like maybe everything will be OK if I just lower all of my expectations.  I can guarantee that I will not be lowering my expectations for myself or for anyone else who may come along.  I am not going to apologize for wanting good things to happen in my life, I am going to keep pushing the envelope and I am going to keep hoping that things get better.  If I slip into the mode where I operate on "blind faith" than so be it.