3yrs; Day 1312 – from Corey; anger
today was a really bad day everyone, i am just telling you because i was really frustrated today. i did not want to go to the pool. i do not like that people have to come and stay with me to take care of me. mom showed me pictures of me in the hospital and living at bryn mawr. seeing those pictures did not really help. i had no idea who it was, then my mom had to once again explain to me that that used to be me
seeing those pictures is quite scary because i see them and do not remember. so i said to mom “who are those pictures of”? she once again must explain to me that those pictures were me after my car accident which is both positive and negative.
its positive because i don’t ever want to think of that day again: however, its negative at the same time because 1. i really do not like exercising, 2. i also do not understand why my body doesn’t move when i ask it to, 3. i really hate not being able to remember things everyday. these things make me confused and angry. i guess thats what it is, a confusing life i must go on with. my mom keeps saying its not forever its just for now so i keep asking “then how long is the ‘for now’ mom”? the problem is no one quite knows?
by the way, i still believe that you really should not speed when driving, i don’t care how much of a rush you are in!
writing this helps me to get my anger out and i am sorry this is hard to read however not every one can have a good day either. i wish that there was a secret to make it a good day and make things all better however we just have to go on. your day does not necessarily have to start when you wake up. you can start all over right now or whenever you are done being angry or frustrated. you can have as many do-overs as you need in one day. i’m on do-over #65, xoxo
3yrs; Day 1311 – from Corey
hello everyone, this is Corey
today my mom and i were having dinner and the topic of running came up.
my cousins are planning a race in september and it is a fundraiser for me. so i asked my mom if i could try and run it?
she told me i am not quite ready; however, today i rode for 24 minutes on the bike building up my stamina.
since the race is for me i want to try and run it so its not just being hosted for me. i want to take part in it. the way i see it, if there is a destination i know i have to reach, then you might as well put me to the challenge because we don’t know if i can do it until i am there!
so i will work every day, including tonight, to strengthen the muscles in my legs so that i can not only walk but the next mile marker i have to reach is to run! it may be a high one to reach for, however, if i dont set high goals i am settling for less than i am capable of.
i am not known to settle for the easy way out and i do not plan on starting now! xoxo
3yrs; 7 months – from Corey
hello everyone it is corey i have not fallen off the side of the earth i am still here.
i know how people say april showers bring may flowers however i think that april showers bring headaches and let me just say they are not even a little bit as pretty as flowers. even with the head ache i manage to work out every day.
so sure my head may hurt every once and a while however beyond that i have been grocery shopping, folding everyone’s laundry, cooking and i learned how to make oatmeal cookies. all of that was for pure enjoyment none of it was anything like a chore or assignment. how many people can say those kinds of things are enjoyable for them?
some of you are wondering how am i feeling ? the thing is my left leg has been getting stiff because my brain is sending the wrong signal to my left leg and foot. when mom asks me to move my left fingers and toes and they are really not moving when my brain tells them to it is not an easy concept for my mind to grasp. i am like “what is happening to me? why is my body not doing what i am telling it to do”? i can not really grasp the idea that half of me does not work so i keep on trying. it is not an easy thing to keep on trying when nothing is happening. mom keeps telling me i am on the right path to a full recovery but i do not feel like i am.
so what do i do about that? thats my question?
all i know is that giving up and quitting are definitely not in the cards for me. so i suppose we keep coming up with new fun and exciting ways to live every day.
if you read all the way through this thank you so much for believing that i can get better, xoxo
3yrs; Day 1306 – she’s “thinking”
Hi Everyone,
Sorry we’ve been quiet again. Miss Corey is suffering with more headaches from this rainy weather. She’s been up through the night, waking with a headache and sleeping in to make up for the overnights. She can make it through the day, pushes through our daily therapies but by dinner she is wiped out again. It’s been hard on her.
I’m hoping she will pen her own entry tomorrow. We’ve been working on more journaling. It’s been very emotional for her which is actually a great sign. She’s expressing thoughts beyond the concrete intellectual level. She’s initiating questions that require her to describe her emotions which is a complex level of expression. Today she asked if she could write about something she “can’t stop thinking about”.
M – You can write about anything Corey. No Topic is off limits
C – I want to write about why I’m afraid my brain injury will hurt her chances to get married and have children.
We’ve never discussed this nor anything close to this topic yet this has been troubling her and makes her nervous. As her mother, it makes me sad that she feels this way but I’m thrilled to listen and read what her thoughts are. I’m excited that she is thinking and initiating these conversations. She’s asking to discuss them….(that being said)….unfortunately, she doesn’t retain the information after it’s discussed and has no memory of the conversation….BUT…..it’s a start! The important piece to remember is she’s been “THINKING” about it!
One day all these puzzle pieces will fit in place. The completed picture will be the NEW Corey, xoxo
3yrs; Day 1304 – TBI long term therapy = as critical as chemo is to cancer
Hi Everyone,
We have some good news and some good news…Medicaid approved an additional 24 sessions for PT. We’re safe to continue at Bryn Mawr until mid-July. What a relief! I am truly hoping we won’t be discharged until Corey is walking independently. She keeps asking me how long it will take. I don’t have the definitive answer but can state without hesitation, it won’t happen as quickly without Natalie and the resources at the rehab. Professional therapy to a TBI survivor is as critical as chemo is to a cancer patient.
To prove Medicaid made the right choice, Corey rode the recumbent bike today for 20 mins completing a full 1/2 mile. Natalie told her she has never had one of her patients achieve that length of time to date. “If the bike were an arcade game, Corey could enter her initials on the top spot waiting for someone to beat her time!”
Watching Corey’s smile as Natalie boasted of her achievement was today’s happy moment! We’ll take it, xoxo
3yrs; Day 1303 – “neutral zone”
Hi Everyone,
Corey is working well with her journal therapy. It is giving me insight into her unspoken fears and frustrations; not that I know how to help her release them but it’s a start.
As you have come to know through our writing, brain injury causes great change and transition for the survivor and their family. With no preparation beforehand nor, typically, any substantial training in how to cope once the injury has intruded into our lives, we become overwhelmed. Thank goodness we began journaling! It has been a great source of healing.
I stumbled onto a ebook called ‘Writing Through Transitions’ by Leia Francisco via a blogger that took her writing course. She noted an important difference: the change is an event (for us brain injury; for anyone – job loss or promotion, marriage or divorce, moving etc) and the transition is the process of reacting to that event.
Leia explains further, that transition has three phases. She uses Dr. William Bridges ‘Three Transition Phases Model’
“1. Endings are the place where transitions start. The change, whether anticipated or not, means letting go of the old ways, old roles or old life view. We will leave behind something from the past as we move ahead.”
“2. The neutral zone is a confusing time, between the old way and the new way, between the known and the unknown. Things are up for grabs, and the ground beneath our feet may be less then solid. This can also be time of great creativity and freedom to explore.”
“3. New beginnings is the emotional acceptance and participation in the changed situation, role or life view. We redefine who we are.”
Leia writes, “we each experience these phases in our own way, with a unique psychological timeline, and we must go through all three phases if we are to learn and grow from our transitions.”
The sentence, Endings are the place where transitions start, gives me comfort and oddly enough…hope. My mind has been incessantly repeating this as our new mantra.
The neutral zone. What a brilliant label to describe where we’ve been living! We are between the known and unknown. There is no solid ground, no timeline, we can’t use what we knew in the past and haven’t learned what will help us for the future; yet, we are using each day (some days in pure desperation) to be creative and explore our direction.
New beginnings. Reading the explanation of this phase helped to remove one of my blinders masked by the daily challenges of the neutral zone. I am reminded; we are participating in our changed situation, role and life view. Although our direction and abilities have changed, WE ARE participating in LIVING LIFE.
Living it to the best of our ability, and enjoying the good minutes, will transition us through the neutral zone to new beginnings with greater opportunities and endless possibilities, xoxo
3yrs; Day 1300 – Caregiver’s “writing therapy”
Hi Everyone,
Thank you for your prayers and continued support.
Tonight we are sharing on a much deeper level. It is the unspoken truth many know, some can sense and a few have read between the lines. Tonight the unspoken has a voice that I hope will help transform us, awaken new possibilities and uncover hidden blessings so we continue to heal.
We have hit (what I hope) is…was our all time low. It has not been an easy road the last month (yes, still queen of the understatements)
Caregiving is all consuming. It swallows the person you were, the person you are and the person you hope to be. Adapting to a major life altering change forces you into a world of uncertainty. Brain Injury affects the entire family. Relationships change. Finances and employment can change. The familiar story changes, leaving us feeling isolated, fearful and in a constant state of anxiety waiting for the next seizure, appeal or outburst. The cuts to services and medical coverage adds to my personal burden to create care for Corey. Each day I feel more stressed and more vulnerable which leads to feelings of helplessness. Exhaustion is the enemy. It alters intellect, emotions and thought clarity.
A family goes through the grief stages as if there was a death; shock, pain, anger, bargaining, depression, reconstruction and acceptance. I’m not sure I’ve made it through most of these. In fact, I’m sure I haven’t and that is why I collapsed this month. I handled the shock…the anger was suppressed, bargaining became defiance. When someone said, “you can’t” or “it won’t happen” it just challenged me to make it happen and be more determined to accomplish what ever it was I needed to get for Corey.
Coming to terms emotionally with our changed life means I have to mourn the life we all lost. I’ve suppressed the anger, depression and masked the pain with every breath I had because I felt I had to stay focused and forward thinking not only to help Corey but for Caitlin and JohnPaul. We had to survive our new life.
As the saying goes, “you can run but you can’t hide”…the volcano has erupted and almost wiped out the village!
“the world breaks everyone and afterward many are strong at the broken places” – Ernest Hemingway
Time for reconstruction; becoming stronger at our broken places.
Life after brain injury for the survivor, caregiver and family, takes courage. It requires learning many new skills and adjusting (often painfully) to the “new normal”. We want to run from the pain, deny this is happening and hope it all goes away (even though we know it won’t).
With life turned upside down, journaling gives us a voice releasing the fear, uncertainty and pain. The pages don’t judge, the words free us from imploding. The pages will not criticize because we are not adjusting or stop us because we repeat the same story over and over as we process our thoughts. Journaling patiently accepts our sadness and tears. It absorbs the pain, never complains as we speak in confused circles and it replaces the quicksand with solid ground to help our thoughts and words turn to action, launching us towards the future.
Corey and I have been working on “writing therapy”. She’s become accustomed to identifying her emotions using her named personalities, moving towards expanding her description using a journaling approach. Every day she begins her process with a few strokes of her pen, moves to her keyboard and gradually we work through her day, her thoughts, her story.
We are replacing ‘don’t’ and can’t with DO and CAN. We focus on her feeling safe, giving one direction, one question, limit choices, keep to a strict routine. We are rephrasing sentences so we don’t ask questions that challenge her short term memory such as “Do you remember”, “Did you forget”? She is finding her voice hidden behind her scream.
Today’s prompt; My brain injury will not prevent me from…
Corey’s entry-
my brain injury will not prevent me from succeeding.
when i can not find the right way i don’t give up. i try and try again until it is found.
there are basicaly 100 rights to a wrong and you can always make sure your negative situation is positive. it is all in the way you look at it.
i think that brain injury is a nasty combination of words because no one wants to be thought of as the one with a brain injury or anything like it, when really there is so much more to a human.
____________________________________________
We are learning acceptance and how to reconstruct our lives because we will NOT let brain injury keep us from succeeding, xoxo
3yrs; Day 1299 – caregiver’s scream
Time for more prayers!
I am sitting in my home office listening to Corey scream and kick, rejecting the presence of her teacher; just one of several tantrums since this morning.
Medication is not the answer; the compounds often counteract the intended result and add new side affects that are harder to cope with then the initial issue.
Pray for her short term memory to return
Pray for her anxiety to be released
Pray she learns to communicate her emotions rather then explode them
Pray for her mental, emotional progress
Pray for me, caitlin and our team please xoxo
3yrs; Day 1297 – from Corey
As a single footstep will not make a path on the earth, so a single thought will not make a pathway in the mind. To make a deep physical path, we walk again and again. To make a deep mental path, we must think over and over the kind of thoughts we wish to dominate our lives – Henry David Thoreau
Hi everyone,
We are trying to take those steps and repeat the thoughts that will not only dominate our lives but continue to propel us forward.
At the moment we are walking in quicksand physically and mentally…tough, tough days!
If any of you have Motivational quotes or words that inspire you, please write us. We need a little chicken soup for the soul…xoxo
3yrs; Day 1293 – Caregiver’s Prayer
Hi Everyone,
Thank you to those of you that read between the lines of these entries. We have been plowing through another difficult run with Corrine.
Corey has not been sleeping through the night. She is waking every 1-2 hours. When she wakes up she is disoriented and frightened when she doesn’t recognize our night nurse (Kim has been with us 4 nights for 6 months). She screams for me yelling “Marie”, “Mom”, “wake up”, “come get me”, “I’m really mad at you”, etc. It is unrelenting for 2-3 hours, four nights a week. Once I’m awake, I don’t go back to sleep. I try not to interfere with Kim’s attempt to settle her and most nights they succeed…truly earning her salary! 3 nights a week Corey can randomly sleeps 4-5 straight hours but as many of you parents out there remember, when you’re used to your child crying out in the night and they begin to sleep through, those are the nights you’re up waiting for the scream.
We have tried Melatonin, Valerian Root and Sleepytime tea hoping to solve this the holistic route. She is currently on a sleep medication but we decided to try Ambien to supplement. In true Corey form she responds the opposite. She not only is wide awake, she’s even angrier and if she does doze off she wakes with extreme night sweats. Needless to say, she’s off Ambien.
Our days have been difficult as well. Corrine has been argumentative, defiant, violent and boarding on her evil twin Raging Rachel.
We also have some concerns about Corey’s left side. It appears that the left arm and left leg are beginning to contract (stiffen up). This is not uncommon for TBI survivors despite regular exercise. However, she is losing some range of motion as a result of the tone. We are discussing the possibility of Botox shots so we hopefully prevent further loss of range of motion causing physical regression.
All of this is shadowed by our recent discovery that Medicaid is capping their out-patient rehab visits. We haven’t been denied or discharged yet, but we are preparing our “discussion” to argue their comparison of “maintenance” vs “progress for functional improvement” rehabilitation. The bottom line may come down to arguing the new law capping Out-Patient visits.
With the aforementioned as our back story, today was particularly difficult. Corey stepped in and out of her tantrums every hour from the moment she woke up. This afternoon at Bryn Mawr she was so outraged Natalie physically removed her from the lobby; I headed to the duck pond listening to her screams linger in the hallway.
As I exited the building, the air hit my face and released my tears. I walked the familiar path towards the water remembering the tears I shed during her inpatient days. My body, mind and spirit was exhausted as I sat on the bench, face in my hands, sobbing. Why is this our life? When will it get better?
From the distance I heard a salutation from passing strangers, “Have a Happy Easter”. I remembered it was Holy Thursday. I could hear the echo of Mrs. Grady’s voice, my 7th grade religion teacher, talking about Jesus in the Garden after the Last Supper. He was afraid; knowing what He needed to face the next morning, begging His Father to let the cup pass over him. Mrs. Grady taught me that in that moment Jesus was human, just like me. He was scared, angry and filled with the ‘WHY’ questions every human faces at some point during the course of their lives.
I wasn’t kneeling across a rock in a garden but I was sitting on a bench shedding the same tears of fear and anger. Silently screaming the questions that no one can answer or explain.
I sat quietly, concentrating on releasing the heaviness and started our conversation…
“I don’t know where You found the strength to stand up and walk forward but please help me” “Help me to release the heartache for my child”
“Help me to stay strong when I feel like crumbling; to stand and walk forward when I want to run away”
“Help me to pull it together and smile when she looks to me for confidence”
“Help me to help her through this time”
I can’t say I heard a response but I’m hoping the wind carried my words and they will be heard.
If I can impose, I know you all are praying for us, I am asking to lean on you as I stand up and try to continue to walk forward for Corey. Please add my prayers to yours this weekend, xoxo