2yrs; Day 949 – TBI can make you laugh
Hi Everyone,
Wednesday’s and Friday’s are slower paced than the rest of the days in the week. Corey didn’t sleep much last night and took advantage of the quiet morning to sleep in. We have a nurse on these days which allows me time to run out to accomplish errands or take personal/professional appointments.
Tonight we thought we’d share the humorous moments of TBI.
One of my errands today included a trip to Costco. (The household products Corey and our nurses need are more economical when you buy in bulk!) Among the staples I also purchased a new bathing suit for Corey. I texted a picture of her options and she was excited about the new purchase. By the time I came home, she not only forgot her selection, she didn’t remember where I came from.
Since Corey was not with me, we tried on the suit to check the size. It fit, she loved it and refused to take it off! She also insisted we get her sun hat and cover up. Once she her outfit was complete I left for an afternoon appointment. While I was out, our nurse sent a picture via text. Corey was working with Jen, her school PT, in her bathing suit, hat and cover up!
When I arrived home Corey was still in her suit, but our chores were not over for the day. I suggested we change out of her beach ensemble so we could go to the store.
M – Corey, let’s change your bathing suit for something a little more presentable for the store.
C – where’s my bathing suit
M – you’re wearing it;
(Corey look down at her body, looked up at me pointing to her self)
C – (shocked, she called out in a high pitched tone and a big smile) WHAT!?
M – you’ve been wearing it for about 3 hours
C – Where was I when this happened?
We call these “DORI” moments…they also cause us to break out in uncontrollable laughter! Corey, Caitlin and I didn’t stop laughing for at least 10 minutes on this one.
Another moment we wanted to share was an adorable email response she sent to her girlfriend. The email asked Corey what she’s been doing lately. Her response;
‘I have not been doing much just working out a lot I need to get my body in good shape for the beach’.
This girl cracks me up, xoxo
2yrs; Day 948 – Corey’s perception
Hi Everyone,
Yesterday was definitely a Monday! Driving home from Bryn Mawr this afternoon I had a fleeting thought of heading to the airport…I have a credit card and can buy whatever I need when I get to whatever remote hide-away I choose. Sometimes daydreaming can be just as affective as reality…there are no limits to our imagination or creativity to solve a challenge!
Corey is just as frustrated with her therapy. She accepts that this is her daily responsibility but doesn’t want to call it by its formal name any longer. She’s decided we are going to Bryn Mawr to workout NOT do therapy! Whatever we call it is fine with me as long as we keep going!
Corey continues to make progress physically. She is also making progress communicating her needs and emotions. I know many of you are specifically praying for her temperament and frustrations to be lifted so she can find peace. Many more of you are praying her short term memory improves. Although yesterday and today were difficult, she did an excellent job expressing her anger and inner most thoughts.
Example #1; as Corey walks, her brain is sending messages to her entire body. She has to think about all of the following at the same time: directions as to where she’s headed, hold the Moses stick, follow Mom, balance, stand up straight, bend your knees, lift your leg, follow through, heel/toe and now add the distractions of the crowded gym/hallway, strangers walking by her, Natalie physically holding her and walking beside her, the lights, the sounds, now add the fear and anxiety ~ Whoa baby! ~
She was doing a great job. Her motion was fluid, she stood straight and tall; truly it was the best we have seen her walk in a month. Natalie interjected a direction for Corey to move her hip that would improve her gate. Within a second, Corey began repeatedly screaming “Mom” so loudly she startled the staff and patients in the gym. We instantly settled her down asking her to talk it out instead of yelling. Her tone didn’t drop but she did scream what was wrong; “When can we be done this”? “When can I walk by myself down this hall so no one has to help me”?
Natalie and I were thrilled, not that she was upset but that she clearly expressed what her anger meant. Every outburst prior to this was just that…screaming without a clue as to if she was frustrated, in pain or afraid. This was a huge improvement.
Example #2; we were sitting in the cafeteria having lunch. There were 3 people sitting along the wall bench a few tables down from us. Corey took a momentary pause, looked at me and said, “Mom, there are people that look at my arm and think it can’t move. Just because I’m not moving it does not mean I can’t. (She then physically demonstrated the following with the assistance of her right arm) I can lift it, straighten it and move it anyway I want”. I grinned knowing she was subtly showing her voyeurs her capabilities.
She continued; “Mom, just because someone speaks slowly doesn’t mean their brain is slow, too”. “My brain moves very fast but no one can see it”. “Why can’t people look at me and see I am normal and can do whatever I want”?
M – Corey, many of the people we know here watch you walk, eat, drink and talk because they remember you when you couldn’t do anything. They are amazed at your recovery. It’s miraculous and brings such joy, we don’t want to stop watching everything you’re capable of doing!
C – Do we know them (she pointed to the patrons on our Right)
M – No but maybe their family member is here getting better, too.
I shared this conversation with my sister Diane. She added an interesting perspective. She remembers coming to visit us at Bryn Mawr watching other patients that were more advanced than Corey wondering if she would reach the same milestones. In hindsight, it might have appeared that she was staring but in fact she was in a hope-like trance imagining Corey and her future abilities.
Perception is intriguing. It can either be black or white; cup half full or half empty; it can either inspire you or destroy confidence and motivation. Our perception and interpretation of whatever challenge we face will directly correlate to the success or failure of its outcome.
We choose cup half full, xoxo
2yrs; 7 months – Life keeps moving
Hi Everyone,
We have lived in our neighborhood for 22 years. It’s a small development that was quickly filled with many children. Our home is positioned in the center of the neighborhood. Although the girls had a big brother, the house behind us provided them with their childhood best friend and “sister”, Allison. JohnPaul may have had two sisters but when our neighbors across the street moved in, he met his 3 adopted brothers. Despite the 30 children that initially moved in, these 7 were inseparable!
On warm sunny days they lived outside riding bikes and playing in the creek. The cold months always included sledding on Schnelly’s hill. On rainy days they were either in the basement cutting and sewing my fabric scraps for GI Joe parachutes, army tents or sleeping bags. The girls made pillows for their dolls. Corey was the youngest and not allowed to use a needle and thread, so she used a stapler for her creations. Another rainy day favorite was playing in the garage; each one had a glue gun and a box of 1,000 Popsicle sticks to share. The boys played with the little green army guys, the girls played Barbie’s and bitty babies. There were football games, softball games, basketball, night tag and countless sleep over’s.
They were the neighborhoods first generation. As they grew, moved on to college and began to live their lives, somehow they managed to keep in touch. Ironically yesterday Allison and Billy, the oldest of the brothers, were married on the same day! JohnPaul joined “his brothers” as one of Billy’s best men and Caitlin was Allison’s photographer…Corey stayed home with our nurse as I ran from one wedding to the other!
This weekend Corey has also demonstrated how life moves forward. The most recent change I’ve seen in her moments of clarity has been frequently initiating conversations with ‘thought starter’ questions.
Her presentation in questioning has changed as well;
C – Mom, I have 2 questions…first of all (and she states her Q) and second of all…
Once I recovered from the shock of how she executed her questions, I realized I didn’t hear her clearly and asked that she repeat it just to prove she in fact demonstrated a higher level of cognitive thinking.
Her sense of humor continues to develop as she communicates more fluently as well. This morning I was helping her get dressed for the day. I knelt in front of her (moving quite slowly; my knees and legs were not awake yet ~ so I told myself)
C-mom, are you okay?
M-yeah, I’m fine
C-do you need a massage?
Verbalizing my confession; No, I need a younger body!
Corey looked pensive; ‘I can’t help you with the younger body part but if I were you, I wouldn’t pass up a massage’.
Corey’s physical strides have been nothing short of miraculous but her recent moments of clarity have been startling as well as encouraging. There have been many incremental changes. I’m very thankful for more signs of healing, growth and forward momentum.
The saying is true; life keeps moving. Our kids grow up, move away, find their way and if we’re lucky; circle back to invite us to join them on the new path they’ve designed for the next part of this crazy ride! If it feels like time stands still, this weekend proves it most definitely does not! Just wish I didn’t blink so often, xoxo
2yrs; Day 942 – from Corey
Hi Everyone,
I was standing at the sink cleaning the dinner dishes. Corey was sitting at the kitchen table. Like many mother’s, I have eyes in the back and side of my head keenly aware of every movement my child makes whether I am sitting beside her or across the room from her.
My peripheral vision noticed she reached for the portable house phone sitting on the table. Staring at the keys she began to dial.
M-who are you calling?
C-I don’t know where my phone is. I was going to call it.
I dried my hands and joined her at the table.
M-honey, you lost your phone in the accident
Corey was silent for several minutes staring at me. I waited, knowing she had questions. She repeatedly looked back and forth between me and the phone in her hand.
C-where have I been?
M-what do you mean?
C-where have I been?
M-do you mean today? (I knew what she meant but was hoping she’d clarify the timeline in her mind)
C-the last few weeks. (Corey can not process that she’s lost years)
M-do you recognize where you are?
C-home but things are different. Where have I been?
M-the accident damaged you memory so it’s like you’ve been asleep.
C-how long have I been gone?
M-2 ½ years
I could see her processing. We sat silent for several more minutes.
C-am I the only one left? Where should I be?
M-your friends are in college. You will go too, life just took a little detour.
I can’t imagine how difficult it is to “wake up” and find that several years have passed. On a positive note, I witnessed a surge of reconnections tonight. Corey didn’t hold onto her moment of clarity for very long but in that moment her physical appearance changed as we spoke. Her face softened, her body relaxed, her eyes were clear. In fact, I felt captivated by her glance. I could feel our connection. Although she was sad, she was awake, alert and present.
I sat across from her holding my breath waiting for the next question; wondering what must be going through her mind yet I was afraid to interject and break her train of thought. Witnessing moments like these I get a rush of adrenaline hoping the switch to her memory has turned back on. The moment passes. A sensation fills my body as if the floor of an elevator was dropping. My mind encourages my heart, the wires reconnected for a moment creating sparks; “we had her ~ she’s breaking through”.
This is the moment we wait for every day.
This is the moment that makes a difficult day a little easier.
This is the moment that will get us up again tomorrow to keep working towards another moment, or two!
This is the moment that validates our mantra
~ Never give up and Never give in…it’s a Matter of Time! xoxo
2yrs; Day 941 – from Corey
Hi Everyone,
It always amazes me to watch Corey process her thoughts. Her post last night is the perfect example. We have been working on identifying her anxieties as well as developing her communication skills. Part of our daily challenge is trying to assimilate the extent of Corey’s memory loss. Does she not remember a particular experience/subject or does she forget the words to describe what she knows but can not express?
The following summary of last night’s conversation, preceding her journal entry, will best explain what I mean.
M-would you like to write the carepage tonight?
C-what will I say?
M-what do you want to say?
C-I don’t know mom.
M-do you want to talk about your day?
C-(within an instant, she began screaming) I don’t remember my day!
M-why are you yelling at me?
C-because I’m mad! What’s wrong with me that I can’t remember?
M-You were in a car accident and your memory was erased. Although you don’t remember today, you are remembering more and more.
(I pointed to the bottle of Zero Water on the table) What’s that?
C-a cup
M-not a cup…
C-something you drink out of
M-exactly! You might not remember that this is called a bottle but you know what to do with it. That part of your memory has reconnected and someday you’ll remember it’s called a bottle.
Corey became upset again. I reached for the laptop and opened a blank document.
M-get it out ~ type it…and so she began.
Reaching into Corey’s emotions and thoughts is similar to peeling back an onion. Each time she communicates a negative feeling or frustration I respond with ‘why’ or ‘what does that feel like’? She doesn’t reject the prompts; in fact, she reaches deeper within her self to qualify what she’s trying to express. When she verbalizes a statement I tell her to type it. We reread each thought which generates more insight allowing the layers to unfold.
What we are discovering is a higher level of thinking and deeper emotional healing. We are also seeing an improvement in her temperament as she learns how to express herself. She’s finally capable of releasing what’s been pent up. I think we’ve found the key to Pandora’s Box.
We shared her journal entry with her speech therapist today. Kate was blown away at the depth, detail and insight Corey eloquently penned. She thanked Corey, “you’re writing has helped me to better understand how hard it is for you to live with memory loss”. Kate continued, “We can empathize with you but truly can’t understand what you feel each day”. “Your writing down how you feel helps all of us think of ways we can better help you get through your day so you feel safe and confident to try to remember new things”.
The difficulty most TBI survivors face is the judgment of others. Looking at a patient from the ‘outside’ they may walk with a limp or ride in a wheelchair, their speech may be slurred, their response time may be slow and/or they speak on a primitive level to express themselves, if they speak at all. These physical challenges shouldn’t define their intellect nor should it insinuate it’s been compromised. In fact; it is often the contrary, this is where false judgment comes into play.
I can’t tell you how many ‘strangers’ look at Corey in her wheelchair and assume she was born that way. There are others that hear her speak and have shared their presumptions by responding in a child like ‘preschool’ voice literally commenting to me how sad it is this beautiful young woman can only express herself in a ‘simple’ conversation. As you can imagine, this infuriates Corey. After any of these brief interactions she will turn to me stating, “I’m 20 not 2”; or my personal favorite, she uses her ‘Biff tone of voice’ as if she’s calling out to George McFly, “Helloooo, I’m in here”!
Yes Corey, you’re “in there”! As you heal and rebuild the connections that were severed, you continue to reveal the facets of the woman you are, xoxo
~ When you look at a person, any person, remember everyone has a story. Everyone has gone through something that has changed them ~ TBIHopeandInspiration.com
2yrs; Day 940 – from Corey
Hi Everyone,
This is Corey
The most defined memory I have is of the past
I remember bits and pieces
It’s scary because I do not know what I will remember when
When I do remember things it makes me feel happy
I do not remember what happened today
Everyday feels like before I had traumatic brain injury
I do not understand what happened to me
I think life is scary
I hope my memory will change
I have to remember that eventually I will go to bed and then there will be a tomorrow
You have to get up and live another day because that will help you move on
Maybe one day I will be a chef
Maybe one day I will get married and have my own kids
Maybe one day I will wake up and there will be a little kid in my room waiting for me to help him
(M-who’s that little kid?)
(C-mine)
No one thought I would be here today
I proved everyone wrong
No one knows what is going to happen
Every day I wake up its another day in my life that I have not lived before
I am going to do my best every day even though its scary
Have a good nights sleep
Happy dreams xoxo
2yrs; Day 939 – from Corey
Hi Everyone,
We hope you had a relaxing weekend. Aunt Diane came to visit us for her Birthday weekend. Corey, Diane and I have so much fun together. There is always at least one episode of uncontrollable laughter.
We did a little shopping, we went out to dinner (check out the gallery) and took Diane for a countryside drive to see parts of “Pennsyl-tukey” she’s never seen.
After Corey and I returned home from driving Diane to the train station, we spent some time outside enjoying the spring night. Corey and I walked along the deck and ramp towards the driveway. When we don’t use the walker, I position my body facing Corey’s right, supporting her upper torso as I side step with each forward step she takes.
Tonight, I truly walked beside her. We both faced forward and she stepped heel/toe walking in unison with me. This is a first. We are planning to practice walking on the grass with the hope it will develop her leg strength to walk on the beach this summer!
We also tried a childhood favorite tonight ~ blowing bubbles. Corey held the bubble container with her left hand, dipped the bubble wand with her right and blew through the wand to create a stream of bubbles. You may think this simple little task is easy; however, her coordination and breath control is monumental!
This is Corey;
I liked blowing bubbles because it makes me happy.
It reminds me of when I was little.
I have happy memories of summer.
Going to the beach
swinging on the swings
playing basketball to beat Jonathan
vacations
riding bikes
babysitting Connor
playing baseball and softball
having sleepovers with my neighbor Allison
This summer I want to go to the beach
I want to walk on the sand and the boardwalk all by myself with no help because I finally can
I want to swim
This summer is going to be so much fun because I can finally do more
Who else is ready for summer? xoxo
2yrs; Day 935 – the job of an Advocate
Hi Everyone,
Many of you have written and encouraged us to publish Corey’s story. My sister and I often talk about her recovery and loosely outline the possible chapters. Her therapies are just one chapter in her story. Another is not only advocating for her therapy but appealing for her clinical care as well.
Yesterday we received a letter from the Insurance Company denying a medication she needs for her bladder issues. Her Urologist chose a certain medication based on the limited reported side affects and, more importantly, the compatibility with her current seizure medications. We have been using the sample packs for a month to build her tolerance and document the improvement. The current sample is the second medication we’ve tried. The first was discontinued after 4 days due to severe migraines.
Insurance denied her the new prescription stating she needs to try a myriad of alternative medications. If she suffers adverse affects from those, then they will approve what we currently know is working. I spent 5 hours calling the Doctors office and Insurance Company arranging an appeal of this decision.
Today I participated via conference call on our 2nd level appeal for skilled nursing. The committee is comprised of a Medical Director, 3 voting members and 3 non-voting members. The 3 voting members are trained in Healthcare Insurance and Hospital administration. The non-voting members included an appeals coordinator (his job is to explain procedure to the committee). The Medical Director was a family practitioner. The Insurance Company sends Corey’s information to an outside independent physician that is board certified in Neurology and their input is sent in to the committee as well.
In addition to the documentation from Dr. Long and the Neuro Psych department at Bryn Mawr, I have an opportunity to present our day to day details of her clinical needs requiring skilled nursing.
For this appeal, I also sent documentation proving a board certified neurologist does not always understand the Low Level Brain Injury population unless they are working in that environment on a daily basis. In addition, I sent in detailed documentation of Corey’s recent silent seizures, aspiration issues through the night and her recent episode forcing me to use her suction machine during dinner last week.
I wish I could say that I remained unemotional and stated the facts clearly and succinctly, however, the conversation got quite heated at one point. I had to remind myself to be professional and not react as an emotional mother. Sadly, this process wears me down and between yesterday’s calls and today’s insulting questions…I lost it at one point. I regained my composure to pull it together at the end but we’ll see. They will be sending me their decision via mail within the next 7-10 business days.
On a positive note, the endocrinologist called today to tell us the MRI showed the tumor remained the same. This is good news as Dr. Yalamanchelli does not need to rush to surgery. In the interim we need to go back in to Wills Eye for several detailed field of vision tests. We will repeat the MRI (God help her) in 3-6 months.
The job of an advocate is ridiculously hard. My kids often tease me that my blood pressure is so low that they’re not sure I have blood flowing. When I can feel my blood pressure, we’re in trouble…I felt it rising over the last two days!
As I hung up with the Insurance Company today my chest hurt, my hands were shaking, I was physically and emotionally shaken by the lengths our conversation took to defend our need for skilled nursing; what I consider a ‘basic’ need to home care.
I couldn’t leave my home office to interact with Corey in this shaken state. She intuitively picks up on every facial expression I have. It occurred to me, I was creating this emotional state within myself. I presented the facts, stated our case and the decision will be made regardless of my reactions. Once I receive the determination I then have the right to appeal if it is not a satisfactory solution for our case. How is my remaining overwrought going to help us throughout the rest of our day?
I recalled a paragraph I recently read in Danny Bader’s book, Back from Heaven’s Front Porch. ‘…people think shifting your focus or optimism, or positive thinking, or visualization, or whatever you want to call it ~ is based on avoiding reality. To me it’s quite the opposite. It’s being acutely aware of the reality and then seeing what it would look like if it were different, seeing it in another way’…’Here’s the point. When you’re focused on reality, you’re just that, you are concentrating on the here and the now, whatever your situation’.
I could sit in the negative feelings, the anger and resentment, or I could focus on the opposite emotions; contentment and joy. This is not a switch that is easily turned on. It requires a conscious effort, talking out loud to my self, deep breathing and several moments of silence ~ I actually was focusing more on stopping my body from trembling!
Sometimes the process requires removing yourself from the physical environment in which you experienced the negativity. My hand was forced to do just this as our washer broke today requiring a trip to the local Laundromat (45 minutes away).
Caitlin and Corey had a girl’s night as I headed through Amish country to complete a necessary chore. My trip removed me from this afternoon’s reality placing me in the now. As I drove between two buggies I was forced to slow down, literally. I began to breathe not only taking in the fresh air but the beauty of the Lancaster countryside.
Today’s chapter could have been titled WTH (what the hell) but instead I will call it, Buggies, tulips and peacocks. The car ride was beautiful. The sun was setting, I had a chance to admire the spring flowers and trees blooming, I passed a gorgeous peacock casually strolling along the side of the road between two farms and the buggies slow pace reminded me to appreciate where I was. As crazy as this may sound (some might call it pathetic) sitting in the Laundromat was respite time; no phones, no questions and no one knew me.
…’you can’t get out of your current reality until you start believing that something better…a vision of a better reality…is possible’…’contentment and joy becomes real for you when you acknowledge that that’s what you want in your life’ ~ Danny Bader
We’ve already proven ANYTHING is possible and we can continue to make it our reality, xoxo
2yrs; Day 932 – give up, give in or give it all you got!
Hi Everyone,
We didn’t disappear; we just jumped off the grid for a few days!
Corey is adding a new twist to Bryn Mawr’s OT program. She introduced them to cooking therapy. We prepared Lasagna Cupcakes, Caprese Salad and Parmesan bread Wednesday night. Thursday morning we used the therapy kitchen to finish the dishes and cooked lunch for our therapy team. Corey’s cooking was a hit with everyone that was invited to lunch and they’ve decided to go to the administration to submit the reasons why we need to incorporate this luncheon as an active therapy tool!
She has been practicing with the sample wheelchair at Bryn Mawr. I was pleasantly surprised at her accuracy in steering the chair. I didn’t push her through the hospital once all day. She even maneuvered entering and exiting the elevators by her self! I think we’ll call her Danica Flintstone!
Tomorrow begins a new week of opportunities and possibilities. We were discussing this week’s plans at dinner when Aunt Diane sent a quote that reminded her of Corey ~ ‘you’ve only got three choices in life: Give up, give in, or give it all you’ve got’. Corey’s response was, “the first 2 don’t qualify for me”!
Our dinner discussion revolved around this concept. We are so fortunate that she continues to get stronger. Perhaps our perspective throughout this journey was naïve? We never thought whether or not Corey could get better, we assumed she would…it was just a matter of time. We kept a blind eye and a deaf ear to the statistical facts that would alter that assumption. Perspective is everything regardless of the challenge. It’s our decision to choose to avoid the opportunities and possibilities by reciting excuses or we can choose to do whatever it takes to live the life we continue to dream about.
It’s not a question of can we do this; it’s about doing it…and giving it all we’ve got! xoxo
2yrs; Day 927 – from Corey
Hi Everyone,
This is Corey
I got measured for a new wheelchair
I can use a practice chair to get used to it
I can walk with my feet like Fred Flintstone
And I can move the wheel with my right hand so I can steer
I can lock the wheels with both of my hands
I get to pick whatever color I want and I think I want purple
It is comfortable to sit in
I don’t know how long I will be in it before I can walk but until then it helps me get from place to place
I ask my mom every day when I can get out of the chair and when can I stop all my therapy
But if I quit I won’t get better or get out of my chair
I want to drive my kids around
That might require a mini van
I want to walk on the beach
And swim
I want to go on the boardwalk
I want to travel to France, Italy and I really want to go to London and see my Uncle Frank
I want to get a job and work
And I will be a great chef when I get better
I have to work hard
Do not give up or in
And I have to try hard not to let negative nanci take over
This is Marie
It was very exciting to watch Corey try her new chair today. She instinctually moved both feet to propel her chair down the hallway. I can just see her and JohnPaul having wheelchair races on the driveway! The greatest thrill was watching her release the left break using her left hand. It took extra effort and a little help from Elaine but she also placed the left lever in the locked position!!
I remember the “fitting” for her current chair 2 yrs ago. She was unable to hold her head independently and could not sit in an upright position without another person bracing her so she wouldn’t fall over. I remember how heavy my heart was thinking about Corey searching for her first car, knowing this wasn’t the “ride” she was expecting.
This new chair represents another level of her recovery we could not have expected 6 months ago, yet here we are. Today my heart was filled with joy to watch her.
Never give up and never give in
Every day presents new challenges we don’t think we have the strength or stamina to push through; and then there is a moment that presents itself that clearly shows us we are yards ahead of where we were.
Tomorrow we face another challenge. Corey has to have another closed MRI for the pituitary tumor, with contrast! Not only is the MRI closed, she will have an IV for the contrast solution and be strapped down in a caged helmet for almost 3 hours. We (and please include me in this) need prayers. I wear the radioactive suit and hold her hands throughout the test talking to her to keep her calm; they have already told me I can not get my own IV…so much for caring for the caregiver!!
Wish us luck! xoxo