3 Years; “What have you learned”?
Hi Everyone,
3 years…such a short period of time in the grand scheme of life yet it seems a lifetime has passed.
After Corey wrote her post last night, she turned to me and asked, “what have you learned”?
I sarcastically responded, “Other then the obvious”? Pharmaceutical drugs, Neurological anatomy, Physical, Occupational, Speech, Cognitive and Behavioral therapy techniques, Insurance claims, appeals and bill management, adaptive design for home renovations, alternative techniques including cooking, art, aqua and music therapy, and networking with survivors, families and legislators across the country? She said, “No, mom, YOU”.
3 Years ago our lives were structured and routine. Kids were in college, Corey was working, looking forward to college and I had a fulfilling career I loved. I began making plans for my empty nest. The accident forced those plans to change.
The lessons I’ve learned coincides with the lessons taught in a book I’m currently reading, Deep Change – Discovering the Leader Within; by Robert Quinn. Although it is written for the Business arena, its lessons can cross over to an individuals personal life. As I continue to learn how to cope with our new normal, Quinn’s message best translates my personal healing.
Change invites uncertainty and hard work. Quinn coined the phrase, “Deep change or slow death”. He explains, slow death happens when we deny that our situation has grown structured and stagnant. “Symptoms include: being a passive observer, feeling powerless, having no vitality, no purpose, feeling like you are going through the motions.” Why would any one choose that life style? Quinn points out that most people pick this because we are afraid to change. Sometimes our patterns feel safe, masking tunnel vision and boredom.
But what if you were forced to change due to life’s circumstances. Everything you knew, every routine, every enjoyment had to change. This is what Traumatic Brain Injury does to individuals and families.
Chapter One of Deep Change is entitled “Walking Naked into the Land of Uncertainty”. Quinn makes a distinction between incremental change and deep change. Incremental change involves advanced planning with well thought out steps. The person making the change is in control and can reverse course at anytime. Deep change is radical – we surrender control. “It requires new ways of thinking and behaving. It is major in scope, involves risk-taking and is generally irreversible”.
Change comes with choices. October 2, 2010 I had a choice.
1. I could withdraw, feel victimized, refuse help and sink into depression.
2. I could keep doing what I’ve always done the way I’ve always done it and find myself struggling to cope and keep up with simple obligations
3. I could take the time to seek advice and counseling, assess the situation, educate myself, accept help and create a new plan.
4. I could change my thinking, my attitude and my behavior.
I’m no saint…”walking naked into the land of uncertainty” comes with a “dark night of the soul”. I occasionally chose #1 and #2 (they’re perfect ingredients for a pity party) but it was #3 and #4 that caused deep change for me and helped me develop new coping skills and life strategies as well as continue personal growth. This change is permanent.
Deep change can be frightening. It’s not comfortable to look within. It’s much easier to focus on the external lessons and tangible tasks then to face my emotions; but I try to practice how to consciously respond to situations rather then irrationally react. It’s not easy. I stumble and I’m still working on it (just ask the kids) but I’m honestly trying. If I can respond to this new normal with a vision in mind, change can be positive for all of us. Change can provide new perspective and new energy
What Change has taught me so far;
The circus arrives without warning
The usual cliches are not comforting when you’re in the fox hole
Follow your intuition
Don’t let fear guide you
Perspective can save your sanity
Patience
Unconditional Love
An act of kindness is the greatest gift to give and receive
Power of Positive thinking fuels stamina
Faith – God has patience and will wait for this definition
Its okay not to talk to Him everyday, it doesn’t mean He’s not beside me
Be gentle with myself, I’m allowed to make mistakes
Never give up and never give in
Change is guaranteed…it’s a Matter of Time, xoxo
2yrs; Day 1095 – from Corey
hi everyone its corey once again ,
you know 3 years ago tonight i went out with my best friend shelly and we were in a car accident affecting my brain and thankfully the impact did not have a long term effect on shelly.
i do not even really remember being in the accident but i know it was hard for shelly, because she remembers. the car accident might have changed our bodies but nothing inside because thats what best friends are, they are there for no matter what and through everything.
my memory is trying to come back, so everyday i exercise to especially remind my body what its like to move.
i have learned not to stress about the little things that really don’t put an impact on my life.
dinner and cooking get me happy and its important to focus on what is happy in your life. focusing on what is happy gives you a positive outgoing way of life and the happy things get you through when you are frustrated and angry.
i know that basically everyone only gets today but what you do with today is most important; and i realize that today is almost over for everyone but i really hope that it went well and everyone goes home and is happy or at least remembers this post and try’s to be, xoxo
2yrs; Day 1094 – from Corey
Hi Everyone, It’s Marie and Corey!
We had a quiet weekend. I want to share a few things I watched Corey achieve.
During spa time, she recognized, sang and named the title of Dave Matthew’s song “Ant’s Marching”. She also recalled it was her “clean-up song” from pre-school.
She independently stood off the chair lift, reached for the walker and walked in to the kitchen unassisted by me! She even manipulated the walker to make the turns necessary to maneuver the island to get to the kitchen table, which is not as easy as it sounds!
We managed to get to Macy’s one-day sale to purchase her new Party dress…I will let her tell you all about it…
Hi, everyone its corey and I happen to buy a new party dress for my birthday which will be on October 13th. The party dress is for the comedy show which will be on the 12th one day before my birthday, but not just any birthday the big 2-1! Why is it that the older I get the faster time goes? If you were wondering I will tell you the surprise, the dress is purple. Maybe that’s not such a surprise to all of you because it happens to be my favorite color. Next I will go find new shoes because I am really hoping not to wear my leg brace to the party.
I want to know if anyone would like to help me get ready for college. Mom thought it would be a good idea to ask you to help me with my writing the carepages. Are there any questions you want to know about me? If you send me your questions it will help me start a carepage and I will answer your questions when I don’t know what to write at the end of my day. It will help me practice for college papers. I do not really know why I will have papers when I’m going to a cooking college but they always get you so I guess I need practice. Are you in? What do you want to know about Corey Marie Beattie?
Something I can tell you is I’m tired and it’s time for bed.
Happy dreams, xoxo
2yrs; Day 1093 – drunk on rootbeer?
Hi Everyone,
Corey completed the full MRI this time (thank goodness!) We had a little help with sedation which lingered through the evening. today corey walked into a restaurant without the wheelchair. She ordered rootbeer when the sedation truly showed it’s affect with sugar! She was actually hysterical, as if she’d had laughing gas from the dentist. Caitlin and I are pretty sure we celebrated her 21st birthday early!
The sedation comes with “hangover” affects. She slept fairly well through the night. Typically she is awake every two hours; last night she woke every 3-4 and slept in until 10!
We are still working on the seizure medication issues…keep those positive thoughts flowing. We’re going to lay low today and tomorrow catching up on chores around the house. It will be good to have some down time.
Enjoy your weekend! xoxo
2yrs; Day 1090 – Breakthrough seizures
Hi Everyone, it’s Marie
Corey’s swimming session provided another first!
We spent the majority of the session exercising her legs and hips. Once she was adequately warmed up, she and Caitlin began walking the perimeter of the therapy pool with the grab bar on Corey’s right side. Caitlin holds her waist belt and Corey holds onto the hand rail. When Corey reached the corner and needed to turn to her left, she instinctually reached for the rail in front of her with her left hand. She transitioned the turn using both hands.
Unbeknownst to Corey, Caitlin (walking behind her) released her grasp of the waist belt. Corey walked the width of the pool holding onto the grab bar on her right side for about 12 feet. Caitlin’s hands were raised to show me “Look Ma’ No hands”!
When Corey reached the opposite corner we told her she walked that distance by herself. She paused, smiled and screamed Tah-Dah! This is the perfect example of what we hold onto as the moment to focus on in the midst of chaos!
Speaking of chaos…tomorrow is the rescheduled MRI beginning at 1:45. The doctor’s will be looking at the changes in the pituitary tumor and the VP shunt. Next week is more blood work and the last of the field vision testing. The following week the Endocrinologist, Neurologist and Neurosurgeon will decide how we should proceed.
We are also having a few new issues with her seizures and seizure medications. Corey appears to be having silent seizures again. Break through seizures are not uncommon and can be caused by some of the other meds she’s on…they thin the affects of the seizure meds. The generic pharmaceutical company that provides one of her most important seizure meds has placed their drug on backorder. The only company providing the drug at this time is the one that caused the cognitive issues she suffered 9 months ago. We will be going back to the seizure specialist to work on an alternative med and/or solution.
I know you all have her in your daily prayers but please target them towards some stability. We are wearing a little thin these days (yes, I’m still the queen of understatements).
I’m SO over the saying “it’s always something”…we need boring for awhile!! xoxo
2yrs; Day 1089 – from Corey
hi everyone its corey,
after reading what all of you had to say i realized just how much i was in this trip for the long haul.
i am coming up on my 3rd year of this hard battle, and every now and again it is good to know that there are other people in it with me and of course my family; but you guys too, and you all count.
today we met with a hospital to talk to them about how we can help patients with TBI who are my age get the care they need to get better and not go into a nursing home. we talk to law makers too hoping they can help us help others.
to be with people your own age helps. getting better is hard and it would be 10 times as hard if you lost all of your friends, they help to keep you sane. thankfully i did not have to go away because my mom was willing to bring me home and try. the recovery is basically endless. there is really no end date and no one knows how long it can take. well imagine knowing how long it will take and living in a nursing home? i think that would be terrible, i can not even imagine. that is why its important that law makers meet me to realize that i have time and a life ahead of me, and so do 100’s of others that can not get therapy.
my getting better is taking a long time and even our fight for others can take a long time, but i always say and live by never give up and never give in, xoxo
2yrs; Day 1088 – from Corey
hi everyone its corey
yesterday and today were tough, to say the least. i had to put on my big girl pants and go work out when i really did not want to. i told mom that i am basically an adult but there are always people taking care of me which i do not really want that anymore.
its not easy to be in my shoes. there are alot of days i want to quit and not to get better any more. when i want to quit i remember, with reminders, how sick i used to be after the accident happened and the last thing i want is to go back.
often times, even though its what i want, i think about what would happen to me if i quit. then i meet or hear about people who get no therapy or cannot even get it. i think there are plenty of people out there who are not as lucky as me. then i know that moving forward is my only option.
tomorrow is a big day for us in our advocacy work. we are representing people with no options. i think that they will all get better with therapy so i plan on helping to make that a possibility. if i who was almost dead was able to get better, then i think that everyone should get the opportunity to try and never give up or in on yourself…that is my motto, xoxo
2yrs; Day 1086 – from Corey
Hi Everyone its Corey
i have news for all of you!
i will be 21 in 21 days!!
it doesn’t make me feel old it makes me feel really good.
we have 3 months that are busy.
my birthday, then my sisters b day, then thanksgiving, then mom’s b day, and you know christmas, then we tie it all together with our brothers birthday.
every day is hard work so i think its important to plan things to look forward to, you know fun things to get through the boring stuff. but don’t forget to have fun every day because you do not know what is coming your way.
so the answer is just try and be happy all the time, xoxo
2yrs; Day 1083 – from Corey
Hi Everyone it’s Corey,
I am pretty much okay but I have an MRI tomorrow which is scary. Everyone please try to take a minute during your day tomorrow to pray for me. It’s between 1:00 and 3:30.
I’m scared. I’m scared about going in there but I am really happy that my mom will be there with me. She can hold my hand and if something bad happens to me she can talk to me if I can not see her. It will be really really loud and mom and I will put cotton balls in our ears.
After the whole scary thing is over we will go out to eat.
So for everyone that is on here I hope your day will go smoother then mine will. We will write you and tell you how it went as soon as we get home, and don’t forget to pray for my mom too!
Love, Corey xoxo
2yrs; Day 1082 – start living your dreams
Hi Corey,
It was wonderful to see you in the kitchen today working with Jamie, your nurse. You helped her prepare 5 dozen cookies…from scratch!
You began by listing the ingredients, multiplying the measurements to accommodate the recipe; then dividing when you realized you didn’t have enough for the quantity! Your math skills were very impressive.
This afternoon was more difficult for you. Cari, your cooking tutor arrived and you were not a happy girl. In fact, Cari not only met Nellie, she was welcomed by Corrine as well.
I’m proud of you ~ not for expressing your anger with kicking or yelling but communicating the reason why you were upset. Eventually you and Cari began to work together; by the way, you looked like a good team!
You did a very nice job cutting the string beans from Cari’s garden. It was great to watch you lift the bean with your right hand, place it into your left hand, grip the bean with the left hand and as you picked up the kitchen scissors, snipped the end off both sides of the bean. I think I will film you as you concentrate on a task. The step-by-step process of that simple task is amazing to witness. I’m not sure what I enjoyed more; watching you think through the steps or watching both your hands move simultaneously to complete the task. You continue to surprise me.
As I reflect on the day and your struggles, your shirt is all I can think of. (Check out the gallery)
Start Living Your Dreams
I know each day seems endless and I wish I had the answer to your daily question, “when will I be all better”? Even though your goals may seem distant, the road to get there is not. You’re on that road today.
Try not to get frustrated about how long it will take. Get excited about everything we can do right now. The fact is you have started living your dreams; every time you practice walking you’re taking steps towards your independence. Every time you help prepare a meal you’re training for your career.
Living your dream begins long before it’s achieved. Living your dream begins the moment you participate in every exercise and daily task. The joy you receive from looking at a bowl of cleaned beans comes from the effort it took to work with each piece.
You don’t have to wonder when your dreams will begin to be realized; you’re living it NOW. I’m proud of you for not waiting! xoxo