Originally written 11/16/2010
I haven't written in quite awhile, I seem to have gotten caught up in posting my previously written posts. Let's see...what has been going on? My sisters best friend Kristin gave birth this week which came as a huge surprise because Maddie arrived 3 1/2 weeks before they thought she would - scary. Mom and baby are healthy and happy - things just moved alot quicker than anticipated! We did get to have the shower 1 week prior to Maddie's arrival so at least Kristin and Jeremy had received all the gifts and goodies for their little bundle of joy. She is little, 5 lbs, 10 oz - wow, tiny! Jamie decided to learn from Kristin's experience and has already packed her hospital bag even though she is not technically due until mid-December.
Originally written 11/30/2010
Again I find myself falling behind on writing blog posts...really? What other stuff do I have going on? We went to Las Vegas last weekend so we could attend another baby shower being thrown for Jamie, sadly my mom got sick and it knocked her out for the whole weekend and then some. I guess we should look at it as mom's first real mommy lesson for Jamie - you have to stay away from your baby when you are sick - bummer. Mom was stuck in the hotel room all weekend, I got to spend time with Jamie and we did some Christmas shopping and just hung out. Dad helped Nate put up the chair railing in Jackson's room. My dad is a wonderful, giving man but he is not exactly the handiest of fellows. The boys did manage to finish the accents for the room, it looks so great!
We made it back to San Diego and mom was still sick, we had to pass up an invitation to Thanksgiving with great friends because they have a new baby in the family, Madison arrived a little early and we didn't want mom's germs around Madison's premature immune system. I ended up dragging dad to the grocery store and I cooked Thanksgiving for the three of us. It turned out OK - not too impressive but edible. My Christmas shopping is well under way, there are a few things I still need to get but I feel good about what I have accomplished so far.
My beautiful friend Caryn is getting married this coming weekend, I have my jewelry, my shoes, and my purse, my dress is at the cleaners...I am so excited! I get to see Caryn and Mark get married, I will be with fabulous friends and my parents are coming to the wedding as well ~ what a weekend to look forward to!
This blog is about my on-going recovery from a traumatic brain injury, I chose to write about my experiences with the hope that my story will help someone else who may be facing something similar. My story is not meant to make you sad or scared, I will warn you that there are photos from my lengthy stay in the hospital and the photos are somewhat disturbing...my wish is that this story brings you hope!
Friday, April 8, 2011
Wednesday, March 23, 2011
Eye surgery
9/14/2010
I haven't blogged in a few weeks now, I think I was freaking out over my surgery. What could have happened? Umm, let's see, it might not work, I may freak out completely while on the operating table, the surgeon could screw up and I may not be able to see anymore, the way my life has been lately I would not be surprised if any of those things happened. There is no limit to how much crap you are dealt and the way things have been lately I wouldn't be surprised if things kept circling down the crapper....so yes, I was scared of so many things and I was certainly not looking forward to having the surgery. The day of surgery finally rolled around, the surgery center called the day of my procedure and said they were running late...of course they were. My surgery ended up being about an hour and a half after it was originally scheduled. I was given an IV with snazzy little drugs to help you relax, then eye drops to numb the eyes - ow, they sting! Apparently the surgery went well, they only did one eye, the right, hopefully they won't have to go back in and do the left eye. The recovery is less than fun, I was good n' pukey in the car on the way home from the surgery. I slept a good part of the rest of the day but I was supposed to stay propped up, so I wasn't super comfortable - I continued to put ice on my face to help alleviate the bruising...it seems to have worked some, swelling isn't bad and the bruising is mostly in the eye...feelin' pretty!
So now what? Now I wait and see if the surgery was successful, I am praying that the double vision is gone and now its time to re-train my eyes and their connection to my brain. I have my post-op appointment on Tuesday - I hope its good news!
9/22/2010
I had eye alignment surgery recently and I'm working on my recovery, its been a long couple of weeks. I was having a slight melt-down prior to the surgery, what could go wrong? I was going to be awake while they did the surgery, I was going to be given drugs that caused slight amnesia, I was afraid that I might be the asshole that freaked out on the operating table and acted horribly toward the doctor who was working so hard to help me, the doctor could slip and with the bad luck I seem to have I could loose my sight....seriously, these were the fears running through my damaged little brain.
I had my post-op appointment and my doctor and he said that my alignment is at least 50% better - yay! I have been feeling like there is sand in my eye, realistically I know it is the stitches I am feeling but I have to admit that eyeballs gross me out and everything about them freaks me out. Of course I am still very much looking forward to the day they tell me I am ready for contacts and even though eyeballs freak me out I will figure out a way to get them in and out of my eyes!I am starting to move around more and I can read for extended periods of time now and once we get this baby shower completed I will head back to the gym - very happy about that!
Jamie will be home for her San Diego baby shower next weekend, we have come up with a Dr. Seuss theme and my mom, Jamie's best friends Kristen and Amber, and myself are working hard to make sure everything is just right. Thank goodness Amber is so creative and comes up with so many great ideas otherwise all the guests would just be sitting around staring at each other! Luckily I think it will all come together nicely, I have the menu planned, we have started buying supplies and I think all of my years of event planning puts me in a much different mindset, because my mom seems to be in a near panic, and I just believe it will all work out the way it is supposed to...who knows who's way is more accurate, time will tell. I cannot wait for Jamie and Nate to receive all of the gifts to start their adventure with Jackson and I am so excited to welcome their little bundle of joy to the world this December. I cannot wait to cuddle with my love bug nephew!
Tuesday, March 22, 2011
September
Originally written 9/10/2010
Its been a wild week of doctors appointments and therapy - we have been going up to Encinitas everyday this week except Monday, thankfully my mom is willing to drive me around and doesn't complain at all! Today I am having my first mammogram - I hear they are unpleasant and I am really not looking forward to it but I am glad that my doctor is getting me started on it early because I think early detection is the key and I'm glad my doctor is having me start 5 years before the "minimum" age. I have had too much medical crap in my life lately, now I just go to my appointments and do what they tell me..
Originally written 9/14/2010
I spoke with one of my therapists today about my life now. She was concerned about how people can get caught up in their own lives, time goes by and from the outside it seems like you are better, in an obscure way it can feel like people forget that you are still healing. Yes, I have healed some - yes, my days are easier than they once were but what needs to be remembered is that I still have a long way to go on my healing journey. I have my off days, I get grumpy and I want to cry from time to time. I am still human, my feelings still get hurt, and I still have moments when I feel like my world is falling apart. I will always feel lucky and blessed that I survived this accident, I will always want to know exactly what happened and how it happened and yet I know that I will never have the answers to my questions. There is a definite difference in how my life is now compared to when I first came home from the hospital. I am still fighting to get better but now I am in a place where I have partially healed - I am not ready to live on my own yet and I am not ready to get a job yet, I still cannot drive but I have a definite interest in being included in events still. Of course I need a way to get to the event and I need a place to stay if a night runs late (yes, it is just like being a teenager again). I feel like I miss alot because things come along but I may not have a way to get there or I may not have a place to spend the night so I end up staying home and being bummed out that I am missing things again. I guess the hardest thing about this healing process now is this limbo-stage. I am getting there but I'm not there yet, I wish I knew how to combat these feelings of being unimportant or of being forgotten. I don't have anything new to add to a conversation - I don't have stories from the work place I don't have dating catastrophe's to share, life feels very boring and all too familiar these days. I suppose I could talk about the challenges that my trainer throws my way at the gym or I could talk about the Nifty Knitter I am dabbling with...I am boring myself with this junk...
Its been a wild week of doctors appointments and therapy - we have been going up to Encinitas everyday this week except Monday, thankfully my mom is willing to drive me around and doesn't complain at all! Today I am having my first mammogram - I hear they are unpleasant and I am really not looking forward to it but I am glad that my doctor is getting me started on it early because I think early detection is the key and I'm glad my doctor is having me start 5 years before the "minimum" age. I have had too much medical crap in my life lately, now I just go to my appointments and do what they tell me..
Originally written 9/14/2010
I spoke with one of my therapists today about my life now. She was concerned about how people can get caught up in their own lives, time goes by and from the outside it seems like you are better, in an obscure way it can feel like people forget that you are still healing. Yes, I have healed some - yes, my days are easier than they once were but what needs to be remembered is that I still have a long way to go on my healing journey. I have my off days, I get grumpy and I want to cry from time to time. I am still human, my feelings still get hurt, and I still have moments when I feel like my world is falling apart. I will always feel lucky and blessed that I survived this accident, I will always want to know exactly what happened and how it happened and yet I know that I will never have the answers to my questions. There is a definite difference in how my life is now compared to when I first came home from the hospital. I am still fighting to get better but now I am in a place where I have partially healed - I am not ready to live on my own yet and I am not ready to get a job yet, I still cannot drive but I have a definite interest in being included in events still. Of course I need a way to get to the event and I need a place to stay if a night runs late (yes, it is just like being a teenager again). I feel like I miss alot because things come along but I may not have a way to get there or I may not have a place to spend the night so I end up staying home and being bummed out that I am missing things again. I guess the hardest thing about this healing process now is this limbo-stage. I am getting there but I'm not there yet, I wish I knew how to combat these feelings of being unimportant or of being forgotten. I don't have anything new to add to a conversation - I don't have stories from the work place I don't have dating catastrophe's to share, life feels very boring and all too familiar these days. I suppose I could talk about the challenges that my trainer throws my way at the gym or I could talk about the Nifty Knitter I am dabbling with...I am boring myself with this junk...
Monday, March 21, 2011
Perfectly Imperfect quotes
originally written 8/30/2010
I read another book written by Lee Woodruff, "Perfectly Imperfect, A life in progress" - she is an amazing story teller and I will be utilizing many quotes directly from her book to make a few points of my own. These are the topics that struck a chord with me:
FEAR
"When you are driving, you have to have a certain amount of trust and faith: trust that you'll get there safely, faith that the other crazy knuckleheads on the road will stay out of your way. When someone else is driving, you have to give up control. You have to believe that the driver will deliver you in one piece, use the necessary reflexes, make the right decisions, and stay on the road." Perfectly Imperfect, A life in progress written by Lee Woodruff
I am still a nervous passenger, I find that my eyes are a little more sensitive to light so it is vital that I keep a pair of good sunglasses with me always. When I first came home from the hospital I would catch myself closing my eyes every time I would start to feel scared in the car, I am happy to say that I have trained myself not to shut my eyes every time I feel the panic setting in. If I want to drive again someday I need to get a grip on my emotions in the car. Yes, I was in a horrible accident but I survived so this is me screaming at the universe "bring it on", I will drive again and I will have a more fulfilling life than I have now.
EXTRAS
' "Treat the waiter the same as the CEO", my dad had told me once, "and you'll probably find something to like about everybody." I had tried to use his approach as a template for living. ' Perfectly Imperfect, A life in progress written by Lee Woodruff
I love this quote! There is nothing I find more offensive that a person who treats their waiter or waitress with disdain. There is also no excuse for shorting someone on their tip, I will argue this until I am blue in the face. I do not care who you are, what you do or what you say; you will never convince me of your justification for mistreating restaurant staff. Tell me that you have worked in a restaurant and then we can have a conversation, otherwise I hope you believe me when I tell you that you simply cannot understand what it is like. What does this have to do with recovering from a traumatic brain injury? Absolutely nothing. This quote simply gave me a forum to rant about something I feel that I have extraordinary knowledge about.
CAREGIVERS
"After every full-blown crisis comes the moment when the adrenaline retreats and the shoulders sag." Perfectly Imperfect, A life in progress written by Lee Woodruff
"For so long, I had been in "go" mode, always moving forward, making decisions." Perfectly Imperfect, A life in progress written by Lee Woodruff
"How does any caregiver really make time for herself in the midst of a cyclone?" Perfectly Imperfect, A life in progress written by Lee Woodruff
"I was in emotional pain, as one doctor would explain to me months later. And emotional pain is just as real and uncomfortable as the physical kind." Perfectly Imperfect, A life in progress written by Lee Woodruff
"In my life, what the miracle of Bob's recovery did more than anything was widen the aperture inside me to witness the presence of small everyday blessings. The big moments are easy to spot. But the real challenge, the art form, is to find gratitude in much simpler things." Perfectly Imperfect, A life in progress written by Lee Woodruff
"Grief is not a competition. Sorrow is sorrow and fear is fear and loss is loss and we humans are all traveling on the same bandwidth in life." Perfectly Imperfect, A life in progress written by Lee Woodruff
One of the reasons I fell in love with this book is because it allows me to get a glimpse of what my parents have been dealing with since my accident, August 1, 2009. Lee Woodruff writes from a caregivers point of view and she helps me see that while this journey of recovery sucks; it doesn't just suck for me. My family has turned their world upside down to make accommodations for me, they allowed me to move home, they take me to see all of my different Doctors. They helped me find a gym and a trainer that works well with me, and they don't seem to mind taking me to and from the gym several times a week. When you hear me say that I feel blessed they are very much the reason.
LIFE LESSONS
"When bad things happen, we all dream of rewinding the tape. But we can't, and so we do the only thing we can: we take those bad things and turn them into situations we can learn from. It's human nature to pan for gold, to find a positive slant in something so negative, because anything less would feel like defeat." Perfectly Imperfect, A life in progress written by Lee Woodruff
I am left feeling dumbfounded when people say "you are handling everything so well", really I am not handling it well. Believe it or not I do have a filter and it prevents me from saying the mundane inappropriate things that pop into my head ALL the time. I believe that we are expected to learn throughout our entire lives, I believe that I am learning to truly appreciate the gifts that have been in front of me all along. I believe that I would not have been able to progress this far if I did not have the help of the brilliant medical minds that have been looking after me since day-1 of this trauma. I believe that there was a point in the not-too-distant past where I would have just given up and though that this is as far as my recovery will go; yet here I am believing that things will continue to improve if I just keep working at it.
DON'T HANG BACK - MAKE CONTACT
"But it is crucial not to hang back: the bravest and most wonderful thing you can do is to be there for someone else, even if this takes you completely out of your comfort zone. When something goes wrong in a friend's life, it is essential to acknowledge what is happening. Don't give up on them if they try at first to push you away, but take your cue from them, do come back - they will need you later on." Perfectly Imperfect, A life in progress written by Lee Woodruff
I haven't had anyone give up on me, which is such a blessing. I have had a few disappointments: when i expected something to go one way and it went another way but, such is life. I have been very pleasantly surprised with a few people who I thought were lost to me but this accident has opened up doors and those people are now friends, once again.
HELP THEM FEEL NORMAL
"Sometimes when a person's life has changed so much, they want to hear what normal sounds like; they want you to treat them as if their world is just like it used to be." Perfectly Imperfect, A life in progress written by Lee Woodruff
I dream of the day where things are "normal" again, things may be a little different but I believe they will "normalize" at some point. Ultimately my likes are still my likes, my dislikes are still the things I would prefer to go without. I like to try new restaurants, I adore spending time with my friends, I like to read, I love to cook, I dream of traveling to Italy. I still hate math, I still cannot play the piano, I still have the urge to act like a complete lunatic to solicitors that come to the front door.
RECOGNIZE THE POWER OF THE HUMAN TOUCH
"When you are visiting the person going through a difficult time, treat him or her like a human being - not a patient. Don't be afraid to make physical contact. Most illnesses and injuries are not contagious. Touches and hugs are one of the most healing things one person can do for another." Perfectly Imperfect, A life in progress written by Lee Woodruff
ESTABLISH A HEALTHY INFORMATION EXCHANGE
"In moments of crisis, everyone wants information, and many people deserve to get it from the source, since lines of communication can be confusing and not knowing can be terrifying. Luckily, the Internet has made it much, much easier to disseminate information and update family and friends." Perfectly Imperfect, A life in progress written by Lee Woodruff
"When you're visiting someone going through a difficult time, don't ask questions that make them recount the whole ordeal, the facts and statistics, or the road ahead. They may not want to talk about the issue at all. Resist the urge to share your own stories about similar illness or diseases and other people you know. Many people think that comparisons are comforting or hopeful, but these stories can actually be terrifying or even insulting." Perfectly Imperfect, A life in progress written by Lee Woodruff
"Ultimately, the best thing you can do is simply listen to the other person you wish to comfort. Be sure to let them know you are there whenever they need to talk, anytime. You don't always have to have a solution or good advice; sometimes people just need to unburden themselves, or simply say things out loud." Perfectly Imperfect, A life in progress written by Lee Woodruff
Thanks to Facebook and Blogspot my story is out there and it is possible to learn everything without having to sit through me trying to tell you everything.
AVOID OVER MOTHERING
"Certain physiological things happen as a result of stress or grief. The caregiver, as well as the patient; is damaged, in crisis and sometimes things inside their brains don't work the way they normally would. Do not repeatedly tell the caregiver to eat or sleep. They cannot." Perfectly Imperfect, A life in progress written by Lee Woodruff
I have a beautiful, fabulous, wonderful mother but I am a 36 year old woman and I am living at home again, dependant upon my parents to drive me everywhere. Ask me if you are uncertain about anything, otherwise trust that I will do my best to stay out of harms way.
BE SENSITIVE TO WHAT THEY NEED TO HEAR
" Don't be afraid to acknowledge the other person's pain. It's okay to say "This stinks, but I'm here every step of the way." " Perfectly Imperfect, A life in progress written by Lee Woodruff
"You play the cards you're dealt.. It's possible that the best approach really is to never stop trying to get your hands on the deck and start dealing them yourself." Perfectly Imperfect, A life in progress written by Lee Woodruff
CHOOSE YOUR WORDS AND ACTIONS WISELY
"Resist the urge to repeatedly tell the person , "You are so strong." They don't always feel strong, and they don't want to have to act strong in front of you or hold back tears so as not to disappoint your expectations or impressions of them." Perfectly Imperfect, A life in progress written by Lee Woodruff
"I understood that the woman thought she was being helpful or thoughtful, but I needed to be approached gently and wanted desperately to be treated like a "normal" person, the person I used to be." Perfectly Imperfect, A life in progress written by Lee Woodruff
UNDERSTAND WHERE FAITH BELONGS
"But faith, especially, means different things to different people. And in the midst of a crisis, people often experience a wide range of emotions." Perfectly Imperfect, A life in progress written by Lee Woodruff
"keep in mind that while spiritual comfort can be helpful to some, it may come off as irritating or overly personal for others." Perfectly Imperfect, A life in progress written by Lee Woodruff
This is a very difficult topic, I do not want to offend anyone and I want you to turn to what makes you comfortable but faith and religion are not the answer for everyone, just something to keep in mind. I am aware that there was some sort of higher power that stepped in to help me - otherwise I would not be here to tell you my tale.
BE THERE FOR THE LONG HAUL
"In the first days and weeks of a crisis, people come out of the woodwork, flooding you with offers to help, with food and flowers and kind encouragement. This is wonderful, but it can also be overwhelming. The real work begins when all the neighbors have gone back to their own lives, and the patient and family still need occasional support." Perfectly Imperfect, A life in progress written by Lee Woodruff
"We are all unexpected experts at surviving. We're no different than so many American families: we've acquired scars, opened our eyes, we've grown and stretched, we've ached and rejoiced. We've felt loss keenly, and we've counted our many blessings. None of us will ever underestimate the power of love, family, and the resilience of the human spirit. Through it all, we've been grateful to have kept our sense of humor and our general optimism intact. We may be messy at the edges some days, but we are a family firmly united at our core. In the end, we are proud to be perfectly imperfect." Perfectly Imperfect, A life in progress written by Lee Woodruff
FRIENDSHIP
"Now she is a girlfriend of extremes, one with whom I have experienced the unbearable weight and the joyful lightness of being. That kind of friendship is a priceless commodity; it exists in its own safety zone. And while it carries with it responsibility, it is also one of the greatest privileges I know." Perfectly Imperfect, A life in progress written by Lee Woodruff
I am so lucky to have found a fabulous group of people who are such dear friends to me. So many people have been amazing sounding boards and pillars of support throughout this journey. I thank you all from the bottom of my heart and look forward to creating new memories soon.
"until you have unintentionally tested a friendship by enduring a crisis together" - Perfectly Imperfect, A life in progress written by Lee Woodruff
"Many times now we can finish each other's sentences, the way I do with my sisters. We've touched black and burned places in each other's souls, those spots we keep covered and bandaged away from others in our lives." Perfectly Imperfect, A life in progress written by Lee Woodruff
Lauren has been that kind of friend for me, we have gotten along so well since the beginning of our friendship - back when we were slinging in beers in a hell-hole of a German restaurant in Las Vegas. We had so much fun together that we often were given waitress stations at opposite ends of a one thousand seat restaurant...yet still we would figure out a way to communicate and get ourselves into trouble. Now Lauren has a fabulous job and is living in Hawaii yet we have been very lucky that she has been able to get to San Diego many times for a quick visit, always to be certain that I am doing OK. I am getting better and hopefully soon I can go to Hawaii to visit Lauren for awhile, I am so looking forward to going to our favorite beach and possibly hitting up the Slurpee machine at 7-11...There have been so many people that have stepped in along the way and I want you to know that I am so grateful for your friendship and support along the way. If I failed to mention you directly over the course of this blog I apologize, I hope at some other place in this blog I thought to mention you directly, if I did not than shame on me and please know that I am not blaming my brain injury for my forgetfulness...
"All of us had holes inside, I had come to understand, charred places that never really healed over completely. It wasn't possible to go through life without bruises and battle scars, and perhaps that wasn't the point anyway." Perfectly Imperfect, A life in progress written by Lee Woodruff
"life moves ever forward, even when we feel incapable of picking up our feet. People adjust, families heal, wounds scar over, although we may never forget."Perfectly Imperfect, A life in progress written by Lee Woodruff
There are days when I feel like I cannot do anything more, there are times when I scream on the inside and wonder why I am facing this recovery. Then directly after those moments of weakness and doubt I remember that I am blessed to have family and friends by my side, I am not going through any of this battle alone. Yes, I get lonely and yes, I am constantly waiting for something else to come along and throw another curve ball my way but if what they say is true and that which doesn't kill us makes us stronger than I feel like I am going to be able to handle anything.
"I hadn't really understood the overarching capacity people have to adapt, to be patient, and to recover. I hadn't factored in the resilience of the human spirit, the very healing powers of time passing, the grace and perspective we find in moments of repose, and the ability of the soul to regenerate." Perfectly Imperfect, A life in progress written by Lee Woodruff
"I count my blessings for having sisters and girlfriends with whom I can unburden and be as comfortable with as a second skin." Perfectly Imperfect, A life in progress written by Lee Woodruff
Final note from Lee Woodruff:
"Finally, my utter admiration goes out to the survivors of brain injuries and their families, both civilian and military. Thank you all for sharing your personal stories with me over the past two years on the road. Your journeys, struggles, and triumphs have made my own life brighter. I pray that no one else will have to walk in our shoes." Perfectly Imperfect, A life in progress written by Lee Woodruff.
It is also my hope that no one else has to go through the uncertainty of recovering from a brain injury, unfortunately I think brain injury is here to stay. Luckily the research is continuing to move forward, now I hope for more resources and more dedication to the study of brain injury and its recovery process. I also find myself wishing for medical insurance companies to be more forward thinking, believe in the recovery process and understand that although you may have to pay more up front you will not be required to pay for such long term care. Allow people the best chance for recovery, they may amaze you with what they can do with that chance.
I read another book written by Lee Woodruff, "Perfectly Imperfect, A life in progress" - she is an amazing story teller and I will be utilizing many quotes directly from her book to make a few points of my own. These are the topics that struck a chord with me:
FEAR
"When you are driving, you have to have a certain amount of trust and faith: trust that you'll get there safely, faith that the other crazy knuckleheads on the road will stay out of your way. When someone else is driving, you have to give up control. You have to believe that the driver will deliver you in one piece, use the necessary reflexes, make the right decisions, and stay on the road." Perfectly Imperfect, A life in progress written by Lee Woodruff
I am still a nervous passenger, I find that my eyes are a little more sensitive to light so it is vital that I keep a pair of good sunglasses with me always. When I first came home from the hospital I would catch myself closing my eyes every time I would start to feel scared in the car, I am happy to say that I have trained myself not to shut my eyes every time I feel the panic setting in. If I want to drive again someday I need to get a grip on my emotions in the car. Yes, I was in a horrible accident but I survived so this is me screaming at the universe "bring it on", I will drive again and I will have a more fulfilling life than I have now.
EXTRAS
' "Treat the waiter the same as the CEO", my dad had told me once, "and you'll probably find something to like about everybody." I had tried to use his approach as a template for living. ' Perfectly Imperfect, A life in progress written by Lee Woodruff
I love this quote! There is nothing I find more offensive that a person who treats their waiter or waitress with disdain. There is also no excuse for shorting someone on their tip, I will argue this until I am blue in the face. I do not care who you are, what you do or what you say; you will never convince me of your justification for mistreating restaurant staff. Tell me that you have worked in a restaurant and then we can have a conversation, otherwise I hope you believe me when I tell you that you simply cannot understand what it is like. What does this have to do with recovering from a traumatic brain injury? Absolutely nothing. This quote simply gave me a forum to rant about something I feel that I have extraordinary knowledge about.
CAREGIVERS
"After every full-blown crisis comes the moment when the adrenaline retreats and the shoulders sag." Perfectly Imperfect, A life in progress written by Lee Woodruff
"For so long, I had been in "go" mode, always moving forward, making decisions." Perfectly Imperfect, A life in progress written by Lee Woodruff
"How does any caregiver really make time for herself in the midst of a cyclone?" Perfectly Imperfect, A life in progress written by Lee Woodruff
"I was in emotional pain, as one doctor would explain to me months later. And emotional pain is just as real and uncomfortable as the physical kind." Perfectly Imperfect, A life in progress written by Lee Woodruff
"In my life, what the miracle of Bob's recovery did more than anything was widen the aperture inside me to witness the presence of small everyday blessings. The big moments are easy to spot. But the real challenge, the art form, is to find gratitude in much simpler things." Perfectly Imperfect, A life in progress written by Lee Woodruff
"Grief is not a competition. Sorrow is sorrow and fear is fear and loss is loss and we humans are all traveling on the same bandwidth in life." Perfectly Imperfect, A life in progress written by Lee Woodruff
One of the reasons I fell in love with this book is because it allows me to get a glimpse of what my parents have been dealing with since my accident, August 1, 2009. Lee Woodruff writes from a caregivers point of view and she helps me see that while this journey of recovery sucks; it doesn't just suck for me. My family has turned their world upside down to make accommodations for me, they allowed me to move home, they take me to see all of my different Doctors. They helped me find a gym and a trainer that works well with me, and they don't seem to mind taking me to and from the gym several times a week. When you hear me say that I feel blessed they are very much the reason.
LIFE LESSONS
"When bad things happen, we all dream of rewinding the tape. But we can't, and so we do the only thing we can: we take those bad things and turn them into situations we can learn from. It's human nature to pan for gold, to find a positive slant in something so negative, because anything less would feel like defeat." Perfectly Imperfect, A life in progress written by Lee Woodruff
I am left feeling dumbfounded when people say "you are handling everything so well", really I am not handling it well. Believe it or not I do have a filter and it prevents me from saying the mundane inappropriate things that pop into my head ALL the time. I believe that we are expected to learn throughout our entire lives, I believe that I am learning to truly appreciate the gifts that have been in front of me all along. I believe that I would not have been able to progress this far if I did not have the help of the brilliant medical minds that have been looking after me since day-1 of this trauma. I believe that there was a point in the not-too-distant past where I would have just given up and though that this is as far as my recovery will go; yet here I am believing that things will continue to improve if I just keep working at it.
DON'T HANG BACK - MAKE CONTACT
"But it is crucial not to hang back: the bravest and most wonderful thing you can do is to be there for someone else, even if this takes you completely out of your comfort zone. When something goes wrong in a friend's life, it is essential to acknowledge what is happening. Don't give up on them if they try at first to push you away, but take your cue from them, do come back - they will need you later on." Perfectly Imperfect, A life in progress written by Lee Woodruff
I haven't had anyone give up on me, which is such a blessing. I have had a few disappointments: when i expected something to go one way and it went another way but, such is life. I have been very pleasantly surprised with a few people who I thought were lost to me but this accident has opened up doors and those people are now friends, once again.
HELP THEM FEEL NORMAL
"Sometimes when a person's life has changed so much, they want to hear what normal sounds like; they want you to treat them as if their world is just like it used to be." Perfectly Imperfect, A life in progress written by Lee Woodruff
I dream of the day where things are "normal" again, things may be a little different but I believe they will "normalize" at some point. Ultimately my likes are still my likes, my dislikes are still the things I would prefer to go without. I like to try new restaurants, I adore spending time with my friends, I like to read, I love to cook, I dream of traveling to Italy. I still hate math, I still cannot play the piano, I still have the urge to act like a complete lunatic to solicitors that come to the front door.
RECOGNIZE THE POWER OF THE HUMAN TOUCH
"When you are visiting the person going through a difficult time, treat him or her like a human being - not a patient. Don't be afraid to make physical contact. Most illnesses and injuries are not contagious. Touches and hugs are one of the most healing things one person can do for another." Perfectly Imperfect, A life in progress written by Lee Woodruff
ESTABLISH A HEALTHY INFORMATION EXCHANGE
"In moments of crisis, everyone wants information, and many people deserve to get it from the source, since lines of communication can be confusing and not knowing can be terrifying. Luckily, the Internet has made it much, much easier to disseminate information and update family and friends." Perfectly Imperfect, A life in progress written by Lee Woodruff
"When you're visiting someone going through a difficult time, don't ask questions that make them recount the whole ordeal, the facts and statistics, or the road ahead. They may not want to talk about the issue at all. Resist the urge to share your own stories about similar illness or diseases and other people you know. Many people think that comparisons are comforting or hopeful, but these stories can actually be terrifying or even insulting." Perfectly Imperfect, A life in progress written by Lee Woodruff
"Ultimately, the best thing you can do is simply listen to the other person you wish to comfort. Be sure to let them know you are there whenever they need to talk, anytime. You don't always have to have a solution or good advice; sometimes people just need to unburden themselves, or simply say things out loud." Perfectly Imperfect, A life in progress written by Lee Woodruff
Thanks to Facebook and Blogspot my story is out there and it is possible to learn everything without having to sit through me trying to tell you everything.
AVOID OVER MOTHERING
"Certain physiological things happen as a result of stress or grief. The caregiver, as well as the patient; is damaged, in crisis and sometimes things inside their brains don't work the way they normally would. Do not repeatedly tell the caregiver to eat or sleep. They cannot." Perfectly Imperfect, A life in progress written by Lee Woodruff
I have a beautiful, fabulous, wonderful mother but I am a 36 year old woman and I am living at home again, dependant upon my parents to drive me everywhere. Ask me if you are uncertain about anything, otherwise trust that I will do my best to stay out of harms way.
BE SENSITIVE TO WHAT THEY NEED TO HEAR
" Don't be afraid to acknowledge the other person's pain. It's okay to say "This stinks, but I'm here every step of the way." " Perfectly Imperfect, A life in progress written by Lee Woodruff
"You play the cards you're dealt.. It's possible that the best approach really is to never stop trying to get your hands on the deck and start dealing them yourself." Perfectly Imperfect, A life in progress written by Lee Woodruff
CHOOSE YOUR WORDS AND ACTIONS WISELY
"Resist the urge to repeatedly tell the person , "You are so strong." They don't always feel strong, and they don't want to have to act strong in front of you or hold back tears so as not to disappoint your expectations or impressions of them." Perfectly Imperfect, A life in progress written by Lee Woodruff
"I understood that the woman thought she was being helpful or thoughtful, but I needed to be approached gently and wanted desperately to be treated like a "normal" person, the person I used to be." Perfectly Imperfect, A life in progress written by Lee Woodruff
UNDERSTAND WHERE FAITH BELONGS
"But faith, especially, means different things to different people. And in the midst of a crisis, people often experience a wide range of emotions." Perfectly Imperfect, A life in progress written by Lee Woodruff
"keep in mind that while spiritual comfort can be helpful to some, it may come off as irritating or overly personal for others." Perfectly Imperfect, A life in progress written by Lee Woodruff
This is a very difficult topic, I do not want to offend anyone and I want you to turn to what makes you comfortable but faith and religion are not the answer for everyone, just something to keep in mind. I am aware that there was some sort of higher power that stepped in to help me - otherwise I would not be here to tell you my tale.
BE THERE FOR THE LONG HAUL
"In the first days and weeks of a crisis, people come out of the woodwork, flooding you with offers to help, with food and flowers and kind encouragement. This is wonderful, but it can also be overwhelming. The real work begins when all the neighbors have gone back to their own lives, and the patient and family still need occasional support." Perfectly Imperfect, A life in progress written by Lee Woodruff
"We are all unexpected experts at surviving. We're no different than so many American families: we've acquired scars, opened our eyes, we've grown and stretched, we've ached and rejoiced. We've felt loss keenly, and we've counted our many blessings. None of us will ever underestimate the power of love, family, and the resilience of the human spirit. Through it all, we've been grateful to have kept our sense of humor and our general optimism intact. We may be messy at the edges some days, but we are a family firmly united at our core. In the end, we are proud to be perfectly imperfect." Perfectly Imperfect, A life in progress written by Lee Woodruff
FRIENDSHIP
"Now she is a girlfriend of extremes, one with whom I have experienced the unbearable weight and the joyful lightness of being. That kind of friendship is a priceless commodity; it exists in its own safety zone. And while it carries with it responsibility, it is also one of the greatest privileges I know." Perfectly Imperfect, A life in progress written by Lee Woodruff
I am so lucky to have found a fabulous group of people who are such dear friends to me. So many people have been amazing sounding boards and pillars of support throughout this journey. I thank you all from the bottom of my heart and look forward to creating new memories soon.
"until you have unintentionally tested a friendship by enduring a crisis together" - Perfectly Imperfect, A life in progress written by Lee Woodruff
"Many times now we can finish each other's sentences, the way I do with my sisters. We've touched black and burned places in each other's souls, those spots we keep covered and bandaged away from others in our lives." Perfectly Imperfect, A life in progress written by Lee Woodruff
Lauren has been that kind of friend for me, we have gotten along so well since the beginning of our friendship - back when we were slinging in beers in a hell-hole of a German restaurant in Las Vegas. We had so much fun together that we often were given waitress stations at opposite ends of a one thousand seat restaurant...yet still we would figure out a way to communicate and get ourselves into trouble. Now Lauren has a fabulous job and is living in Hawaii yet we have been very lucky that she has been able to get to San Diego many times for a quick visit, always to be certain that I am doing OK. I am getting better and hopefully soon I can go to Hawaii to visit Lauren for awhile, I am so looking forward to going to our favorite beach and possibly hitting up the Slurpee machine at 7-11...There have been so many people that have stepped in along the way and I want you to know that I am so grateful for your friendship and support along the way. If I failed to mention you directly over the course of this blog I apologize, I hope at some other place in this blog I thought to mention you directly, if I did not than shame on me and please know that I am not blaming my brain injury for my forgetfulness...
"All of us had holes inside, I had come to understand, charred places that never really healed over completely. It wasn't possible to go through life without bruises and battle scars, and perhaps that wasn't the point anyway." Perfectly Imperfect, A life in progress written by Lee Woodruff
"life moves ever forward, even when we feel incapable of picking up our feet. People adjust, families heal, wounds scar over, although we may never forget."Perfectly Imperfect, A life in progress written by Lee Woodruff
There are days when I feel like I cannot do anything more, there are times when I scream on the inside and wonder why I am facing this recovery. Then directly after those moments of weakness and doubt I remember that I am blessed to have family and friends by my side, I am not going through any of this battle alone. Yes, I get lonely and yes, I am constantly waiting for something else to come along and throw another curve ball my way but if what they say is true and that which doesn't kill us makes us stronger than I feel like I am going to be able to handle anything.
"I hadn't really understood the overarching capacity people have to adapt, to be patient, and to recover. I hadn't factored in the resilience of the human spirit, the very healing powers of time passing, the grace and perspective we find in moments of repose, and the ability of the soul to regenerate." Perfectly Imperfect, A life in progress written by Lee Woodruff
"I count my blessings for having sisters and girlfriends with whom I can unburden and be as comfortable with as a second skin." Perfectly Imperfect, A life in progress written by Lee Woodruff
Final note from Lee Woodruff:
"Finally, my utter admiration goes out to the survivors of brain injuries and their families, both civilian and military. Thank you all for sharing your personal stories with me over the past two years on the road. Your journeys, struggles, and triumphs have made my own life brighter. I pray that no one else will have to walk in our shoes." Perfectly Imperfect, A life in progress written by Lee Woodruff.
It is also my hope that no one else has to go through the uncertainty of recovering from a brain injury, unfortunately I think brain injury is here to stay. Luckily the research is continuing to move forward, now I hope for more resources and more dedication to the study of brain injury and its recovery process. I also find myself wishing for medical insurance companies to be more forward thinking, believe in the recovery process and understand that although you may have to pay more up front you will not be required to pay for such long term care. Allow people the best chance for recovery, they may amaze you with what they can do with that chance.
Thursday, March 3, 2011
misunderstood & under-represented
Originally written 8/30/2010
I was watching the Emmy's last night, Claire Danes won for lead actress in a miniseries or movie for her role in Temple Grandin - I have not seen the movie but apparently it is about a woman who brought real attention and greater understanding to autism. In her speech Claire Danes spoke to the real Temple Grandin and said that autism finally had a person to identify as a leader in the fight for a disease that is "misunderstood and under-represented". These words "misunderstood and under-represented" really hit home with me, I am in no way comparing traumatic brain injury and autism - I am simply saying that "misunderstood and under-represented" is a very appropriate way to describe TBI. There is a greater understanding of TBI now then there ever has been, for which I am extremely grateful - but there is still a misunderstanding of the whole picture of TBI. The further I find myself from the date of the actual accident is both a blessing and a curse. Its a blessing because I survived, the more time goes by the more synapses seem to connect in this beaten brain of mine, therefore more recovery has happened and the closer I am to being independent once again. It is a curse because when the accident was fresh more people seemed to want to be involved in the process of recovery. I know that it is human nature to tend to be more involved immediately following a catastrophe, what I am hoping is that although a year has passed and although I have gotten better I hope that people will realize that things are still difficult. I don't know if the day will ever arrive when things are simple once again. I hope that I will continue to improve, I hope to be living on my own and working again in the near future, I hope that my upcoming surgery will "fix" my double vision so that I can begin training to drive again...all things considered I know how very lucky I am to even consider having any of these things back in my life, I want so much back and its a long process and I am doing my best to be patient but I find myself getting more frustrated lately and the feelings of frustration seem to be coming at a faster rate.
I was watching the Emmy's last night, Claire Danes won for lead actress in a miniseries or movie for her role in Temple Grandin - I have not seen the movie but apparently it is about a woman who brought real attention and greater understanding to autism. In her speech Claire Danes spoke to the real Temple Grandin and said that autism finally had a person to identify as a leader in the fight for a disease that is "misunderstood and under-represented". These words "misunderstood and under-represented" really hit home with me, I am in no way comparing traumatic brain injury and autism - I am simply saying that "misunderstood and under-represented" is a very appropriate way to describe TBI. There is a greater understanding of TBI now then there ever has been, for which I am extremely grateful - but there is still a misunderstanding of the whole picture of TBI. The further I find myself from the date of the actual accident is both a blessing and a curse. Its a blessing because I survived, the more time goes by the more synapses seem to connect in this beaten brain of mine, therefore more recovery has happened and the closer I am to being independent once again. It is a curse because when the accident was fresh more people seemed to want to be involved in the process of recovery. I know that it is human nature to tend to be more involved immediately following a catastrophe, what I am hoping is that although a year has passed and although I have gotten better I hope that people will realize that things are still difficult. I don't know if the day will ever arrive when things are simple once again. I hope that I will continue to improve, I hope to be living on my own and working again in the near future, I hope that my upcoming surgery will "fix" my double vision so that I can begin training to drive again...all things considered I know how very lucky I am to even consider having any of these things back in my life, I want so much back and its a long process and I am doing my best to be patient but I find myself getting more frustrated lately and the feelings of frustration seem to be coming at a faster rate.
Tuesday, March 1, 2011
8/27/2010
Things have been going pretty well lately, I was approved for more therapy and I am working with PT and OT to ensure that I have more of a "home program" for when insurance makes things difficult again. I like going to therapy because its so helpful to get the immediate feedback from trained professionals. My parents and my friends can tell me that they see a difference or that they think I'm getting better but those comments never receive the rush of relief that I feel when I hear those beautiful words from my therapists.
My girlfriends are in Palm Springs for the weekend celebrating a bachelorette party - while I am thrilled for the bride and I want the ladies to have a great time I can't help but feel left out. I know that they worry about me and probably think that it is better for me not to be at an event that may get a bit out of hand, there may be some insane amounts of drinking and they want to make sure that I am not hurt in anyway. At the same time its a reminder that I am not "normal" yet, no matter how hard I try and no matter how much I have improved, it is never enough. I don't expect for life to be a cake walk from here on out, I know that there will be challenges and I am certain that my heart will be broken by some random boy again someday, I just keep wondering "when will it get a little easier?" I do realize that I am just having a moment of great self-pity and hopefully later today or tomorrow morning the moment will have passed and things can get back to my new normal but for now I am going to wallow in these feelings. I am going to allow myself to be angry that I am too broken to be included in something that is all about fun and celebration. I have said before and I will reiterate, I don't think I am treating this injury much different that anyone else would - it sucks and its hard but it has made me truly cherish the people that have stuck by me and it has made me grateful for the second chances it has created. I know that I can still have amazing experiences and I know that there are still great things out there for me,- they're just waiting for me to find them... my path may be a little different than everyone else's but I do have a future waiting for me, it happens to be a future that I am truly grateful for! I am still able to spend time with my best friend and while I may move a little slower - we still laugh at all the same stupid crap we used to, or we find new stupid crap to entertain ourselves with - we are still able to find the fun in everything.
My girlfriends are in Palm Springs for the weekend celebrating a bachelorette party - while I am thrilled for the bride and I want the ladies to have a great time I can't help but feel left out. I know that they worry about me and probably think that it is better for me not to be at an event that may get a bit out of hand, there may be some insane amounts of drinking and they want to make sure that I am not hurt in anyway. At the same time its a reminder that I am not "normal" yet, no matter how hard I try and no matter how much I have improved, it is never enough. I don't expect for life to be a cake walk from here on out, I know that there will be challenges and I am certain that my heart will be broken by some random boy again someday, I just keep wondering "when will it get a little easier?" I do realize that I am just having a moment of great self-pity and hopefully later today or tomorrow morning the moment will have passed and things can get back to my new normal but for now I am going to wallow in these feelings. I am going to allow myself to be angry that I am too broken to be included in something that is all about fun and celebration. I have said before and I will reiterate, I don't think I am treating this injury much different that anyone else would - it sucks and its hard but it has made me truly cherish the people that have stuck by me and it has made me grateful for the second chances it has created. I know that I can still have amazing experiences and I know that there are still great things out there for me,- they're just waiting for me to find them... my path may be a little different than everyone else's but I do have a future waiting for me, it happens to be a future that I am truly grateful for! I am still able to spend time with my best friend and while I may move a little slower - we still laugh at all the same stupid crap we used to, or we find new stupid crap to entertain ourselves with - we are still able to find the fun in everything.
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| Lunch a the Local |
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| Adult bevies at the hotel rooftop bar |
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| Dinner at the Strip Club |
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| Cooking our entree - watch out boys, she has tongs! |
So yes, its been a rough day but, guess what? Everyone has a rough day from time to time, see- I'm not that different after all and with that said and thought out - POOF, bad mood and self-pity has disappeared!
Tuesday, February 15, 2011
Live Day 2010
Originally written August 2010
The anniversary of the accident has rolled around for the first time, some things seem like they are going by so quickly while other things seem to be moving at a snail's pace. When I got to thinking about the fact that it has been a full year since the accident that changed my life I decided there were two ways of looking at it:
1) I could be sad and cry and spend the day feeling sorry for myself OR 2) I could spend the time with my family and close friends, having fun and being grateful that I am still here to be a part of every one's lives. My therapist told me that alot of brain injury patients are calling the anniversary of their accident their "live day" - because they lived through something horrific. I like that and we are celebrating my live day with a summer BBQ and decorating somewhat Hawaiian-style!
The anniversary of the accident has rolled around for the first time, some things seem like they are going by so quickly while other things seem to be moving at a snail's pace. When I got to thinking about the fact that it has been a full year since the accident that changed my life I decided there were two ways of looking at it:
1) I could be sad and cry and spend the day feeling sorry for myself OR 2) I could spend the time with my family and close friends, having fun and being grateful that I am still here to be a part of every one's lives. My therapist told me that alot of brain injury patients are calling the anniversary of their accident their "live day" - because they lived through something horrific. I like that and we are celebrating my live day with a summer BBQ and decorating somewhat Hawaiian-style!
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| with Caryn and Janet |
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| Laura, Ruth and William |
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| Dick, Gail and Beth |
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| Ruth, William, Matt and I |
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| Dana and Bryn |
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| John, Dana and Jack (due in November) |
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| Ruth, Caryn, Janet and Laura |
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| Kate, William and I |
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| Dad and Scott - grill masters! |
Luckily my parents are very encouraging of me and my hopes to spend time with my friends. We spent a fair amount of time shopping for decorations and groceries, cleaned up the house and the yard, and prepped all the food AND tried to make sure that everyone had a nice time. Whewww, I definitely still get worn out easier than I used to and it takes me longer to recuperate than it once did but it was worth it! I loved planning the party, creating the menu, prepping the food and watching it all come to fruition. I think everyone had a good time and it was so nice to get everyone together and thank them for their kind thoughts and generous words during the roughest time of my life. Plus, I just love feeding people - I am most comfortable in the kitchen and I find it gratifying that you know immediately if guests are happy with their food. Yes, I do know that people think its crazy that I love to cook, go to the grocery store and read cook books and culinary magazines ~ to each his own and if you are benefiting from my quirky love of cooking than might I suggest that you just sit back and enjoy it?!
This quote was on the hospital wall in Hawaii and we all fell in love with it ~ it makes sense and it matters, I hope you take it to heart!
Do what makes you happy...
Be with those who make you Smile..
Laugh as much as you Breathe...
Love as long as you Live...
author unknown
To my loved ones who could not be here for the Live Day party I send you big hugs and thoughts of love and light. Your prayers and your diligence are so appreciated and I want you to know that I adore you for it! Thank you for being such an important part of my life, I hope I get to see you again soon!
To my loved ones who could not be here for the Live Day party I send you big hugs and thoughts of love and light. Your prayers and your diligence are so appreciated and I want you to know that I adore you for it! Thank you for being such an important part of my life, I hope I get to see you again soon!
Monday, February 14, 2011
8/1/2010
How do I talk about how I feel about the anniversary of the accident rolling around? It has been a crazy year and its hard to believe a whole year has passed already. When I think back to everything that happened over the past year I get a little overwhelmed. I received so many lovely messages from friends today and I was able to spend time with good friends and celebrate Miss Alexa's 8th birthday. I also got to finally see Caryn's beautiful home in OB and get to know Mark a little bit better. Caryn and I went to the Local to celebrate Sean's birthday and I got to see lots of friends that I hadn't seen in a long time. I loved seeing so many people and it seemed like the perfect way for me to recognize the day - surrounded by friends who are a supportive of my recovery. I look back at the past year and I'm simply dumbfounded.
Let's review: unexplainable accident, slip into a coma, ambulance ride to the Kona hospital, Life-Flight via helicopter to Oahu, admittance to the Queens hospital Neuro ICU, receive tracheotomy (an opening in the windpipe to permit me to breathe), receive feeding tube, move out of neuro ICU to a step down unit, fight my way out of my coma, transfer to the Rehab of the pacific, learn to talk, sit, stand and walk again, get tracheotomy and feeding tube removed (ouch), learn to eat again, work with physical, occupational and speech therapists to regain so many skills....FINALLY released from Rehab towards the end of October - after 11+ weeks in the hospital it was time to go home to San Diego.
My dad and my sister went from Oahu to the Big Island and packed up my condo, threw all of my stuff into storage and handled my life for me while I couldn't handle it for myself. Yes, I miss living in paradise and yes, I miss having the carefree lifestyle I had while living on my own and there is only so much that is in my own control anymore - it is what it is and I just have to figure out how to deal with it. It always amazes me when people say"you are handling yourself so well" and honestly its a good thing that people cannot hear what I am thinking: there's alot of cursing and alot of venting which just erases any and all classy intentions I may have. It also stuns me when people mention that they think I'm inspirational. The funny thing is that I simply don't see another way, I want to get better and I want to complete this recovery process. The whole process is extremely slow and patience has never been a strong trait of mine. In order to get better I have to keep moving, I have to work on my balance, I actually enjoy going to see my trainer - even though rebuilding all of the muscle I lost last year in painful and hard, I feel better every time something is a little easier today than it was yesterday - I see these improvements with actions at the gym and with the different things I work on at physical therapy. I see that things in the kitchen are becoming more second nature to me, I may never have the easy time I once did but I can still read a recipe, I can still figure out how to tweak a recipe to make it that much better, I think about a few things - what would I add, how would I change it? I still have an odd obsession with culinary magazines and TV shows, I can stand on my own two feet and I can get things in and out of the oven; ultimately things could be a lot worse and I just have to keep reminding myself that I am so lucky because things could have easily gone in the opposite direction for me.
Let's review: unexplainable accident, slip into a coma, ambulance ride to the Kona hospital, Life-Flight via helicopter to Oahu, admittance to the Queens hospital Neuro ICU, receive tracheotomy (an opening in the windpipe to permit me to breathe), receive feeding tube, move out of neuro ICU to a step down unit, fight my way out of my coma, transfer to the Rehab of the pacific, learn to talk, sit, stand and walk again, get tracheotomy and feeding tube removed (ouch), learn to eat again, work with physical, occupational and speech therapists to regain so many skills....FINALLY released from Rehab towards the end of October - after 11+ weeks in the hospital it was time to go home to San Diego.
My dad and my sister went from Oahu to the Big Island and packed up my condo, threw all of my stuff into storage and handled my life for me while I couldn't handle it for myself. Yes, I miss living in paradise and yes, I miss having the carefree lifestyle I had while living on my own and there is only so much that is in my own control anymore - it is what it is and I just have to figure out how to deal with it. It always amazes me when people say"you are handling yourself so well" and honestly its a good thing that people cannot hear what I am thinking: there's alot of cursing and alot of venting which just erases any and all classy intentions I may have. It also stuns me when people mention that they think I'm inspirational. The funny thing is that I simply don't see another way, I want to get better and I want to complete this recovery process. The whole process is extremely slow and patience has never been a strong trait of mine. In order to get better I have to keep moving, I have to work on my balance, I actually enjoy going to see my trainer - even though rebuilding all of the muscle I lost last year in painful and hard, I feel better every time something is a little easier today than it was yesterday - I see these improvements with actions at the gym and with the different things I work on at physical therapy. I see that things in the kitchen are becoming more second nature to me, I may never have the easy time I once did but I can still read a recipe, I can still figure out how to tweak a recipe to make it that much better, I think about a few things - what would I add, how would I change it? I still have an odd obsession with culinary magazines and TV shows, I can stand on my own two feet and I can get things in and out of the oven; ultimately things could be a lot worse and I just have to keep reminding myself that I am so lucky because things could have easily gone in the opposite direction for me.
Friday, February 11, 2011
The last week of July 2010
Originally written July 2010
Alexa's 8th birthday
Kate and Dave held a joint birthday party for their kids - Joel's birthday fell at a very busy time in the past year and they were unable to have a party for him at the time. They ended up having a party for both kids at the Wave House in PB. The kids were given an hour to play on a wave machine (the Flow Rider) and then they were given two hours at an indoor pool with party hosts who played games with them and lifeguards that looked out for their safety.
Kate did me the honor of asking me to help make the cake for the party, Kate had seen a cake that she loved but decided that she could make it bigger and for she felt that she could make it for alot less money. Of course, their was a small amount of drama because Kate is Kate and somehow she always seems to face obstacles in everything she does. (I love you Kate, but you know that I am not lying) Kate had visions of a cake that would have been possible if I would have started planning it two weeks in advance and if I had access to and industrial size refrigerator. Unfortunately the party was the next day, it was 3:00 in the afternoon and we still had to go to the grocery store. I managed to talk Kate into cupcakes and I was able to make them with ocean-colored icing and we found really cool sugar pieces to decorate them with. I think they turned out pretty good - if I do say so myself!
This week was also Sean's birthday at the Local. I had really wanted to go but couldn't figure out how to get downtown and then home again at a decent hour - and yes, it does feel like I am 15 years old and worried about a ride and my curfew...wait, my boyfriend in high school had the curfew - not me! Caryn offered to have me spend the night at her house the night of Sean's birthday celebration, it was great fun to be back out around people that I have known for a long time. I was able to wish Sean "happy birthday" in person and I got to see alot of people I hadn't seen in a long time. It was fun to see the Local in full swing and I did take note of the fact that I can still be out and amongst people in a "normal" setting. The music was a little too loud for my taste and alot of that stems from the fact that I have a harder time hearing people now - I think that I have to concentrate on so much on everything else, therefore my hearing suffers. All hearing tests have come back with my hearing in a normal range, I don't have any physical impairments with my hearing so the only thing that makes sense is that I don't seem to be able to handle too much going on at once.
Alexa's 8th birthday
Kate and Dave held a joint birthday party for their kids - Joel's birthday fell at a very busy time in the past year and they were unable to have a party for him at the time. They ended up having a party for both kids at the Wave House in PB. The kids were given an hour to play on a wave machine (the Flow Rider) and then they were given two hours at an indoor pool with party hosts who played games with them and lifeguards that looked out for their safety.
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This week was also Sean's birthday at the Local. I had really wanted to go but couldn't figure out how to get downtown and then home again at a decent hour - and yes, it does feel like I am 15 years old and worried about a ride and my curfew...wait, my boyfriend in high school had the curfew - not me! Caryn offered to have me spend the night at her house the night of Sean's birthday celebration, it was great fun to be back out around people that I have known for a long time. I was able to wish Sean "happy birthday" in person and I got to see alot of people I hadn't seen in a long time. It was fun to see the Local in full swing and I did take note of the fact that I can still be out and amongst people in a "normal" setting. The music was a little too loud for my taste and alot of that stems from the fact that I have a harder time hearing people now - I think that I have to concentrate on so much on everything else, therefore my hearing suffers. All hearing tests have come back with my hearing in a normal range, I don't have any physical impairments with my hearing so the only thing that makes sense is that I don't seem to be able to handle too much going on at once.
Thursday, February 10, 2011
TBI info
Originally written July 2010
I am so happy to see more information about traumatic brain injuries (TBI) available to the public lately, there have been programs on TV making brain injury more of a reality to everyone. I have seen brain injury covered on MTV's 'True Life', 'Army Wives', and its much more common in newspaper articles. I am so grateful that TBI is becoming more common place and people don't look at me like I'm crazy when I have to tell them about my injury. Its also so unfortunate that TBI has become so much more common because of the war and the dangers that our soldiers are up against. I have an interest in working with TBI in the future, I am not trained as a therapist and I have no interest in going back to school but I feel like there has to be something I can do to help. I'm thinking about something in the bigger picture, something I can do to actually make a living. I feel like I could be more understanding than a "regular" person, I would be able to talk about my actual experiences which might in turn help someone else suffering from TBI....how does that get turned into a paying job?
I have been given the green light to return to therapy for a short time, and thankfully we have found that I am still getting better. I am always so pleased to hear the outcomes of the testing from the therapists. There is a part of me that believes things would be moving along quicker if my medical insurance wasn't evil and simply permitted me to have the therapy they say I need in order to get the most recovery possible. Then there's the other part of me that believes that no matter what obstacles insurance throws in my way I will persevere. I am awfully stubborn and I believe that being stubborn will work in my favor this time, it has to, there just aren't any other options. Yes~ I get tired more quickly than I used to, yes ~ I beat myself up a little every time something is hard for me now when it didn't used to be, yes~ I get angry when I think about why I am in this position in the first place, there is nothing I can do about all of that. All of that frustration is the fuel that will get me through to the next level of recovery.
I am so happy to see more information about traumatic brain injuries (TBI) available to the public lately, there have been programs on TV making brain injury more of a reality to everyone. I have seen brain injury covered on MTV's 'True Life', 'Army Wives', and its much more common in newspaper articles. I am so grateful that TBI is becoming more common place and people don't look at me like I'm crazy when I have to tell them about my injury. Its also so unfortunate that TBI has become so much more common because of the war and the dangers that our soldiers are up against. I have an interest in working with TBI in the future, I am not trained as a therapist and I have no interest in going back to school but I feel like there has to be something I can do to help. I'm thinking about something in the bigger picture, something I can do to actually make a living. I feel like I could be more understanding than a "regular" person, I would be able to talk about my actual experiences which might in turn help someone else suffering from TBI....how does that get turned into a paying job?
I have been given the green light to return to therapy for a short time, and thankfully we have found that I am still getting better. I am always so pleased to hear the outcomes of the testing from the therapists. There is a part of me that believes things would be moving along quicker if my medical insurance wasn't evil and simply permitted me to have the therapy they say I need in order to get the most recovery possible. Then there's the other part of me that believes that no matter what obstacles insurance throws in my way I will persevere. I am awfully stubborn and I believe that being stubborn will work in my favor this time, it has to, there just aren't any other options. Yes~ I get tired more quickly than I used to, yes ~ I beat myself up a little every time something is hard for me now when it didn't used to be, yes~ I get angry when I think about why I am in this position in the first place, there is nothing I can do about all of that. All of that frustration is the fuel that will get me through to the next level of recovery.
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