Words. Such as thanks truly can be uplifting, invigorating, even at times magical. No matter whether you speak, shout, sing or write them. Words are humanity's great communicator. To each other and to the whole world. The whole universe.
When I decided to create this web arena of the stories of various survivors of injury, disease, disabilities and/or misc. I was and am hoping that many will share their experiences with clarity and insight on what it is like to be a 'Survivor'. Since I am also a survivor and I started this with my story, I wanted to choose my words wisely.
So I came to a tough choice. Somehow, I decided I should start my story with one word. Why the decision on one word? Why not start with a poem? Or a joke? Or a great quote? Likely the choice of just a single word to start us off seems like a random choice. But I think part of me wanted to display one thought or one feeling on what I feel like to be a survivor. And the word I started with above and here is one that I believe we all have to think and say every day. But especially me and all survivors.
Have you ever woken up and wondered where you are and how you got there? I awoke in a room of which I was familiar. And while I could very vaguely recall recent events such as TV shows, meals and misc..., I seemed to have very little specific memory of anything. I only knew this was my sister's house and I lived here and in this room. It was as if there was a narrator in my mind telling me which things were correct and important, but he only knew things that were tabulated in the history books of my brain. And that library was incomplete and missing several books and volumes.
I had a broad emotional recollection of people, places, and events. However, most were solely notions with only a miniscule amount of specific recall.
"Why I am like this?", I thought.
With some pondering and looking around I vaguely realized that I had suffered some sort of injury. A head injury. I saw hundreds of images in my mind. Were they real past sights or just flowers of my imagination? Even today I really cannot completely recall what it was like. I only know there were a few slowly regained memories, that crept back in to my head just never quite completely but more like individual images or words. Some memories seemed to be lost forever. In fact, those days waking up at my sister's home are like a half finished story, as in most of those days left no details across my mind. But the very fact that I could recall even parts of them pleased me and it was all a bit like starting over. Like when we all yelled and pleaded in our games as kids the term 'Do over!í Those words often raced across my brain. It was nice that back then, in most cases you could simply say 'do over' and your opponents would agree. Possibly you would be slightly annoyed when such was stated to you but second chances were hard not to grant.
Of course the older you get the less 'do-overs' appear as the more serious the 'do' was and the harder was the 'over'. But the day I truly woke up in late 1999 I felt like I was getting a wonderful and huge 'do-over'.
What Happened & My Story
The 'What Happened' part is not really my story. It is a story and it is about me but I do not think of it as my story.
Why? Well, all the soon to be read details are 100% gathered from others. As mentioned above, to me the date I really woke up at my sister's house was the first day I can remember waking up. The many months of the initial recovery portion of my tale are like months I was not here. Some place else to put it simply. Where? Maybe just knocked out cold. Who knows!?
On September 19, 1999, I took a tumble down some stairs at a friend's house. The rear-lower-left part of my head crashed hard on some stairs. I was instantly knocked out. My buddy discovered me and called 911.
The Paramedics rushed me to the hospital. It was quickly discovered that I was comatose. And while medical technology and knowledge is tremendous, anytime such occurs not much is known, at least at first.
Family and friends were notified and a very worrisome and anxious waiting game began.
With brain injury there is no certainty. My body was breathing and functioning as far as could be told but doctors could not predict what could happen in the next minute or even seconds. Of course, like much from this time I have no direct knowledge of what was being said, thought or felt about my condition, but I can imagine. I have tried to do a role reversal and dream up a situation where I was monitoring a family member or friend's status if they were in the same condition. How would I react to a doctor telling me they could make no promises of survival? Or how would I comfort those around me who were under an enormous level of stress? What would I be thinking when viewing a loved one lying there? How does anyone handle situations were nothing can be done but to wait?
I can only imagine.....
Doctors shortly determined that death was not imminent but could make no promises of full recovery, or even if I would leave my present state. As I have said, I can only guess at the amazing level of stress this time of not being sure what the future held gave those who were waiting. I think and believe that at times of overwhelming hardship; the best parts of you are awoken. Yes, I have heard very little of what things were like during this time, but I can only be thankful that folks waited on me! Their hopes and prayers made a difference I think.
My time in a coma would last for three weeks. On life support and being fed intravenously. Strange. I often wonder where I was, but such philosophical questions are truly impossible to really answer. I guess I believe that deep down I know but cannot express such thoughts, even to myself.
I, of course, have no recollection of 'coming-to' but I view it as like a birth. No one recalls being born. And I do not remember when I was brought back to life or re-born.
However, just as an infant I did not get up that day and start my life in full force! I would have three (3) more months at the hospital going through needed therapy. My muscles, especially legs, were obviously weakened by weeks and weeks of inactivity, so apparently medical personnel and therapists gave me exercises to do. I went from a wheel chair to crutches to steps fairly quickly. I wish I could recall it. Such efforts strengthen the soul and give an individual hope and determination. I guess on some level I do know it happened, or I would not know how valuable it was. But again I have no memory of this time (bored yet with that statement?!). I believe the therapy I was going through, or least notions of it are there. However, I once again can only pass on info as it has been relayed to me.
I was forced to learn everything again. Walking, talking, thinking and eventually even driving! Thankfully the physical therapists at the hospital showed their expertise, as I said they took me from bed-ridden and very weak to walking again pretty quickly. I am sure these exercises were at times not easy but as they say, "If it don't kill ya it only makes ya stronger!"
During these times I was also re-learning a slightly more essential practice - talking.
Shortly after I awoke I attempted to speak but what came out of my mouth were mainly nonsense based syllables and half words. While the medical staff knew that normal speech would likely come back pretty quickly and told my friends and family such, it was still strange. Luckily most found it amusing and very quickly my new language was labeled Larkinese. Just as with my initial physical re-hab I had medical personnel assisting with my speech and such.
Yes 'Larkinese' was apparently not the only humorous thing I expressed. It seems at some point, I was convinced I was being held in some sort of prison and would plead with visitors to help me escape. I'm not sure if this is a typical phenomenon of folks with long stays at the hospital but I am assuming it was mainly due to my extremely active imagination. While once again I have no direct memory of anytime in prison...er.....I mean hospital (hee hee!) I can theorize now that I was imagining then that I was being held captive by Hollywood Nazis or Imperial forces from Star Wars. Largely these notions were quietly laughed at until one day I was able to get out of my room and venture around the hospital. Initially there were serious worries I had somehow left the building but luckily I was found.
Eventually the doctors and medical personnel and my family agreed that it was safe for me to go home. To each of them I can only say a heart felt thanks. And I know the medical staff helps many each and every day. It is their job. Still, work where you can bring an individual back to life deserves a million thanks, not just one.
The long climb back.....and games, puzzles, journal writing aid in recovery
As is evident, my head injury was a major set back to my memory. Some memories of the past were wiped out and holding on to new memories was at first extremely difficult.
My memories of all my initial recovery time are either nonexistent or grossly incomplete until that one day at my sister's house I woke up and actually looked around and thought, "Where am I? Who am I? Why am I here? How did I get here?" Those initial thoughts were quickly followed by a desire to be able to recall such thoughts after I had thought them! Yes, that was the most drastic effect of the injury, huge memory loss and initial failure of short-term memory. Wiped clean from my head were key facets of life. I had to re-learn almost everything and recuperate my short-term memory abilities. I was starting a slow climb back up the ladder. My complete lack of past memories and the inability to make new memories was very tough. At times I felt like somebody or something out of place. Without any recollection, you have no basis to move forward. Yes, there was therapy and meetings with professionals who I believe helped me get back in the saddle, but the long ride would be largely my responsibility.
Partly from advice and partly from my own notions I began to schedule daily activities.
First and foremost was the use of a daily planner. Many, who have never suffered a memory effecting injury, use such. However, for me a journal was a crutch I have used ever since and will likely use for the rest of my days. At first a planner is simply a tool that serves as your brain on paper. Once itís written down, it'll always be there, unlike many of your thoughts that can be easily erased like chalk from the chalkboard. So I made a daily plan and with practice was able to stick to such plans. The planner became my 'boss'. You did not want to disobey or ignore the boss. Plus the activity of writing something down seals such facts better in your noggin.
I still use a planner today and it still sometimes saves me from forgetting important things, In addition to it being a guideline for the day, I also jotted down things that occurred in mine and other's activities. So it has been a great activity to do on a daily basis but essentially it has become less of a back-up and more of a tool that has improved my memory capacity.
I was pleased that my use of a journal/planner was slowly (very slowly!) but surely improving my memory but as with all parts of life, you need fun at times. The daily planning and writing, while not burdensome, lacked any real fun!
There are tons of games and puzzles you can enjoy that are excellent for improving your brain power. Initially, I was given simple games and challenges in my early days of therapy, but once I was away from doctors and therapists I had to come up with my own challenges.
One game that I still play every single day is called 'Memory' or 'Pairs'. We have all played it at some point in our lives. It is where you are given a set of several pairs of images on cards that are all mixed up. Face down you flip over such cards one at a time. Each turn you can flip two cards, if they match you keep them flipped, if not you flip them back over. You keep going until you match all of them.
A very simple game, indeed, but one that is an effective way to aid your very basic recollection and short term memory abilities. I have played this oh sooooo much! I started with a very basic digital version. It was a game on my very first cell phone that my sister got me. I even tally my scores to see if I can beat my best score, etc.
Letís see, I also have played a million variations of the alphabet game. Either the old style, while driving or traveling and looking for letters on street signs/buildings/other vehicles. That version, while not a direct memory exercise is excellent for your observation skills. But another version of the alphabet game - listings items in alphabetical order from different categories such as animals, cities, famous people, or movies test your memory more.
What else? Oh! Trivia games! They are fun and a great way to use your memory and/or learn new facts. From Trivia Pursuit to TV shows like 'Jeopardy' and 'Who Wants to Be a Millionaire' to tons of web based trivia games, I have enjoyed several trivia tests.
Word games are fabulous too. From crosswords (which admittedly I stink at!) to one of my all-time favorite computer games 'Text-Twist'. That game, where you have a jumbled of set of letters and have 2 minutes to figure out what word they spell out, is great fun!
Lastly, I am compelled to play Soduko, the logic number placements grid game. That one truly is fun and frustrating!
So games were another part of my 'getting better' scheme. In addition, general reading be it the news or novels/biographies are great ways to exercise the brain. You are using your cognitive ability as well as short term memory as you must recall what you just read to go on with any confidence. At first, if I stopped an article or book and came back to it the next day, there was much re-reading to to refresh myself. Still eventually I found just by reading on, the new facts that relied on old ones would spark my memory.
I have read everything from the DaVinci Code (like everybody else!), a biography of Jerry Garcia, some James Patterson books, short stories, even Catcher In The Rye! As well as other books and articles. In addition to reading I took up a lot of writing. I wrote a super amateur Sci-Fi novel for a buddy of mine that was serving in the military in Afghanistan. I mailed him the chapters as I wrote. I continue to write lots of short stories, poetry and what not. Even composed a 'rough-draft' novel called 'Heroes & Villains' about a girl and guy who get wrapped up in a big criminal conspiracy. Nothing really publish ready yet but we shall see, I'll keep at it.
In short, I found there are literally hundreds, if not thousands, of daily activities you can do that exercise that muscle in your head. Each have been fun to try and practice and have added to my daily re-growth.
Still, like any challenge in life, you must be able to look at it and laugh. For you own sanity, laughter is the best medicine. My ability to make fun of myself is probably the bit of humor that saved me. If you can't laugh or at least smile, something's wrong. Thanks be, I been able laugh at it all, and at myself.
And the laughs and the learning and re-learning have paid off. Today, I can look back on it all and truly see how far I have come. My memory abilities are back to a good level. And each day they continue to improve. It has been a long ride back, but an enjoyable one. Some may call it amazing. Others say even miraculous. I do not know about all that, I just have a view that each day when you arise, you can look out, smile and say-
"....today is a brand, new day....".
The above listed attempts to improve myself, were mainly enjoyable and at times, challenging. As has been described, my memory was drastically affected by my injury. But I know in my heart and my mind that just by keeping at it, it has and will keep getting better. Each step I make in the right direction is like a tiny new part of my new life. The only somewhat scary part of all of this, is all the memories I have likely lost forever.
I have previously discussed, that the entire time in the hospital is not in my head, or is at least not an accessible memory. But also many, many months, prior my injury have been wiped clean from my library. Going further back I can remember people, images, laughs, loves, and major events but absolutely nothing from my past, from the day I was born to the day I 'woke' up, can be recalled with any detail at all.
Everyone I knew and loved was not forgotten, but lots of specifics were. A great friend of mine began claiming she had the same birthday as me and I thought she was just fibbing to get a laugh. Another pal told me we had been roommates in college, and for awhile I did not believe him! Not that I thought all my friends were scheming liars! The exact opposite, but when you have zero recollection of such things it is hard to believe them and not yourself.
Sometimes, it is tough to doubt yourself but other instances it is easy, too easy. Itís strange as while my head seems to refuse to believe anything it has no record of, but it also can doubt the credibility of memories that are there. It seems the part of your brain that judges the validity of claims made by other sections of the brain, is like a judge or a detective, "Just the facts, Maam." A big part of my recovery has been enabling those different parts of my brain to 'trust' each other. Yes, it has been an interesting ride that I am still enjoying! I know now, that if you keep working on it and building that trust back up between your different parts, the better person you become.
Another interesting facet of my recollections is the way different types of memories are treated. Those 'good' recollections while hazy are really there somewhere in my head, but the bad memories are literally wiped out forever. I do not know if physically you store bad and good recalls separately in different types of brain cells or if you simply recall more of what you likely think of the most - good thoughts. It is probably a combo of both those theories. But I have since accepted that some memories have been lost forever. Unfortunate? Yes. Sad? Maybe a little, but this motivates me to create new memories. And truly treasure those wonderful stories of my life.
All my efforts to improve myself are ongoing and at times they can be hampered by nagging doubts and frustrations. But, overall, these attempts to improve myself come back and win the battle. They are powered by the beautiful parts of life, light, happiness and most of all by Love.
Some where along my journey back to life I learned that Love is by far the most powerful force in our Universe. At times such statements can seem cheesy or a greeting card philosophy. And truly this a notion that I can tell many about, but not make anyone feel as I do. Love is a word that brings on many other words, thoughts, images, and ideas but it really cannot be defined itself. It is an all encompassing force. It is me. It is you. It is all of us. It is everything. It is the only thing.
It is, of course, things like helping and giving. Or like smiling or laughing. Or singing or creating. Or healing.
I guess that last mentioned facet of Love - healing - is what made me realize how incredibly amazing the power of Love truly is.
The love I received and keep receiving is like an unspoken medicine for my soul. And I truly believe everyone needs such medicine. Yes, I am a spiritual person but I do not believe in lecturing others about what I believe or what they should believe. What an individual believes is up to them and exclusively up to them. I only can say that the kindness, sharing, smiles, caring and yes, love that has been given to me is what truly saved my life. Doctors, nurses, therapists, books, games, exercises, and medicines were all key parts of my recovery. Still, without the simple yet incredibly invincible power of Love none of those would have or could have helped.
Hope and Thanks
So to use the first word one more time thanks to you each. Thanks to all. We are all on the journey together and we all can only Survive together.
I leave you all with this poetic expression of my previous thoughts -
Love, what is it?
No one can really say 'what' it is
Except that Love is oh so much
Love is knowledge and learning
Love is helping and healing
Love is wishing on a star
Love is reaching oh so far
Love is to give
Love is to live
Love is a friend
Love is until the end
Love is to share
Love is to care
Love is one, two, three and four
Love is never to ask for more
Love is to try
Love is learning to fly
Love is a child, or a smile
Love is reaching out, staying awhile
Love it is everything....
Love it is the only thing.....