4yrs; Day 1703 – milestone comparisons
Hi Everyone,
Milestone – an action or event marking a significant change or stage in development.
Corey often challenges me to list her accomplishments.
C – Am I really getting better? what was even wrong with me?
M – Well…you were almost dead, so the fact that you’re sitting in the front seat of the car, talking to me, re-learning everything and doing an amazing job that not many people thought you’d ever be capable of doing, I’d say you’re definitely better!
All joking aside, I’ve actually begun to write each individual change in Corey’s development. This exercise has been very cathartic and has helped me reassure Corey (and myself). I remembered my first champion, Nick; our inpatient nurse, trying to reassure me in the beginning.
It was Corey’s 18th birthday. She was in surgery at Christiana hospital to repair her broken femur and I was touring the floor of the brain injury unit (not the expected plan for her milestone birthday). Nick saw my sadness, fear and disbelief as I stood processing this surreal experience. He confidently confided, “I’ve worked here for 31 years. I’ve seen a lot of miracles. Our motto is; (speaking about the patients) they roll in and we walk them out”. I have held onto those words for strength when I thought I had no strength left.
Looking back at Corey’s incremental progress has renewed my motivation. Rereading what practices we’ve used stimulates new creative strategies to try in the present moment. Our focus is not only her physical healing to regain independent function but strengthening her cognitive and emotional development to live life to her best potential as well.
Today was one of those days we tried something we’ve never attempted before. Today’s accomplishment would be significant without recalling the past achievements but quite honestly, looking back makes today’s success more rewarding.
June 1, 2010 – Corey completed her Junior year of High School. She enrolled in the ‘Culinary Arts Exploration Weekend’ at Johnson & Wales University.
June 1, 2011 – Avon Grove HS graduation postponed…Corey was discharged from Bryn Mawr Rehab after 7 months of acute inpatient care. Corey could only move her right pointer finger and thumb for inconsistent YES/NO responses. She could move her right leg from the knee down and wiggle her right toes. She could not open her mouth to eat, drink or speak. She could not hold her head for more than 2 minutes. She could not sit independently. She was 100% dependent for all her daily needs.
June 1, 2012 – Back in Bryn Mawr after Tendon Lengthening surgery, assisted by Natalie and a PT tech – walked 318 feet with a cast on each leg. While in the hospital, she began eating solid foods and drinking thickened liquids. Her voice was no longer ‘breathy’, she began to speak and with volume behind her words. Disoriented, severe memory loss and unable to appropriately communicate her thoughts or emotions.
June 1, 2013 – Typing, texting, reading and appropriately responding to Caitlin via the Ipad. Emotionally, Corey was beginning to emerge. Cognitive therapy began to include board games. Corey began to initiate her desire to stand from a sitting position.
June 1, 2014 – increased focus and effort on walking independently with a walker for Corey’s High School graduation, as well as walking with 2 male escorts for JohnPaul and Jackie’s wedding. Memory loss, emotional challenges and added separation anxiety were escalating and nearly broke our spirit and stamina.
(this was the beginning of a tough summer…pre-Washington DC team)
June 1, 2015 – Corey’s short/long term memory continues to be a deficit but we are beginning to see retention of new experiences. She is consistently and appropriately communicating her frustrations. She is beginning to instinctually use both hands to manipulate a task. Weekly home therapy includes practicing her culinary knife skills chopping vegetables, standing and balancing for 40 minutes and riding an exercise bicycle 3-4x per week for 1.5 miles. Cognitive therapy includes computer games, recipe dictation and music therapy.
Today…June 1, 2015
Driving to therapy, Corey looked at me and said, “mom, I can’t wait to get there and show them I can kick butt”.
We parked at the entrance of the rehab.
Balancing and utilizing her forearm cane,
with my guidance holding onto her gait belt;
COREY WALKED INTO BRYN MAWR for therapy…no wheelchair!
Life will not ask our opinion as challenges present themselves. Life will demand something of us every minute of the day. The more willing and positive we are in accepting the challenges we’re assigned determines the value of what we gain from the experience. Each experience has hidden gifts within them.
Today’s Milestone was an amazing gift, xoxo
4yrs; Day 1698 – ‘a brain injury day’
Hi Everyone,
When someone asks “how was your day”? I think I will coin the phrase “it was a brain injury day”.
For those of you wondering what that means, it’s one of those days that all bets are off. Any continuity you have grown accustomed to is short circuited. There is no logic and no explanation. Trite sayings like ‘one day at a time’ turn into ‘one nano-second at a time’. Brain Injury blindsides us daily.
Corey’s been on another emotional roller coaster. One minute we have amazing, profound clarity (ie. her entry yesterday) and in the next breath, buckle up because she will steer you thru gravity defying loopty-loops you never saw coming!
We need to ask for a few prayers for balance, anxiety relief, serenity, understanding and patience.
Our quote for tomorrow;
In the confrontation between the stream and the rock, the stream always wins. Not thru strength, but thru persistence…Time to snap the locks of our life preserver and jump back in, xoxo
4yrs; Day 1697 – from Corey
hi everybody this is corey
my mom and i were talking about what i want for my self. it made me think that everybody looks forward to having something in their life and sometimes something happens to you that was not in your life plan.
but if you have the right outlook on life, something may take you by surprise. and if you are looking at it the right way, whatever is thrown at you, the results may not be so bad. you may have turned it around in a positive way; again, only if you are looking at life the right way.
you see, life is all about perspective. i have a brain injury and it is not all bad. i keep meeting new people who would like to learn about brain injury and i asked my mom what can i teach them? it happens to turn out that i can teach them a lot about how to relearn things-not arithmetic type things, simply what we do every day and how we do it. things like folding clothes, how to make your bed sitting down, describing words you can’t remember and how to do every thing one handed until my second one catches up. mom simply calls them tricks of the trade for living with brain injury.
so i have a brain injury. i never wanted it. no one ever wants it. but every one that learns from it makes having it a little bit easier, sort of. it depends on how you look at it. today this is my perspective anyway, xoxo
4yrs; Day 1691 – from Corey and Marie
Hi Everyone, It’s Marie and Corey and we have big news…
Project Exercise & Nutritional Eating has reached another milestone.
We began our focus on healthy eating in September of 2013. Corey has been cooking from assorted recipe books that focused on 300-400 calorie meals. Three healthy meals, fruit and healthy fats, along with several medication changes, jumpstarted her weight loss. Corey’s physical progress required us to ramp up our home exercise program. The family and community fundraisers, helped us purchase the TR5 Recumbent Bicycle in September of 2014.
Corey’s exercise regiment at Bryn Mawr and home has enabled her to strengthen her muscles, which in-turn has assisted her to move more fluently. Her weight-loss has decreased the pain in her feet and legs. As of today, she has officially lost 37lbs since September of 2013! She will tell you, “I lost weight not by trying but simply by doing everything the right way”.
Another exciting first. Corey enjoys reading recipe books. Our friend (and day nurse) Jill, will read the recipes aloud to Corey and Corey will transpose them to her notebook. Yesterday Corey wanted to read the recipe ALOUD to Jill. She read the first 2 lines but got frustrated. Mostly because Miss Corey is a perfectionist and wasn’t reading fast enough and stumbling on the words in the recipe.
C-I got frustrated
M-what did Jill tell you; you were doing a great job and keep trying…you’ll get it
C-even I know nobody gets everything right the first time.
C-I hope that nobody gets frustrated when they can not do something right and I hope whoever reads this understands where I’m coming from.
From Corey;
May everybody please pray for me in general but specifically for walking; and in addition, also pray that I can get better as fast as I can. I want to go to culinary school, I want to be a chef, I want a car, I really want to be able to walk very much and oh yeah, I want to go out and make friends. If you pray for me, I will pray for you back, xoxo
4yrs; Day 1689 – a step in the right direction
Hi Everyone,
We’ve had two busy days.
Yesterday, we participated in the 5K Walk Against Hate hosted by the Philadelphia ADL (anti-defamation league).
Corey was very upset that she was in her wheelchair and not walking the race on her own. We decided to set short distance goals. We picked a telephone pole along the Ben Franklin Parkway and walked until we hit the next pole. She’d rest, we’d push her a bit further in her chair and then she stood to walk to the next targeted pole. As the crowds passed they were clapping, praising, encouraging and celebrating her walking.
When we approached the finish line, Corey insisted on getting out of her chair. She was going to walk across not roll across! We were about 50 feet away. It was hot, humid and she had already pushed herself along the route but when I asked her if she wanted to get closer to walk a shorter distance, she put the break on the chair and said, “the further back the better…I got this”. Her total distance using her forearm cane (with me as backup support) was 250 feet (we think).
Bystanders were coming up to Corey filming her and cheering for her as she crossed. The chairman of the Walk heard of accomplishment and introduced himself. Corey was smitten (he was very good looking). After hearing her story, he told her she was an inspiration and his new hero. She exemplifies what it means to be courageous, a fighter and a champion. He also told her she touched his life in a very big way and she made his day. During their publicity photo shoot, he spontaneously kissed her cheek. Check out the gallery for her expression…PRICELESS! She couldn’t stop smiling for the rest of the day.
Today we were back at Bryn Mawr. The team loved her interpretation of the walk and Natalie teased her by asking if she had to find a handsome guy to stand at the end of the hallway to be her incentive to continue to walk with her?
On the PT front, we are now seeing Corey wiggling her toes and moving her foot to the left without a verbal que. Her independent movement is a sign of her ankle and toe muscles strengthening.
Anne commented that today she was able to stretch Corey with exercises that were too difficult for her a few months ago. Her range of motion on the left arm and shoulder is improving and strengthening as well.
The tag line for the ADL walk was “Let’s take a step in the right direction”…Their cause and tag line reaches beyond their intended mission for us. Every step, every stretch, every reach, every conversation and especially every smile reminds us we are taking steps toward the right direction…Corey rediscovering her independence and living life, xoxo
4yrs; Day 1684 – don’t ignore the basics
Hi Everyone,
I’m joining you for your morning cup of coffee. This time of day can often feel overwhelming when we think of the TO DO list we left for ourselves yesterday. Let’s face it, most lists are tedious and require effort to read let alone scratch off what you’ve completed.
I’ve started to practice a new approach to my morning list writing. The first 3 lines have changed.
1. take a minute to step outside, take a deep breath in and out, and truly look at my surroundings.
2. think of one positive moment from yesterday…there is ALWAYS one.
3. promise myself to ‘look’ for one today.
Our days are long and difficult. There are moments we’re unaware the calendar dates have changed. Let’s face it, the motivational sayings for achievement don’t come with a warning label for tenacity. A friend reminded me, “To accomplish anything worthwhile frequently requires doing the same thing, over and over again and again”…I pointed out this quote also defines INSANITY! As only a true friend can clearly redirect, “Insanity is doing the same thing over and over again without seeing any change”; Touche! That was the catalyst to our new ‘get back to basics’ approach. Consider it ‘whipped cream’ for our coffee.
Corey’s routine can seem tedious for both of us. After 4 1/2 years it feels like mile 10 in a marathon; not quite half way and we’re not sure where the finish line is because no one showed us the map of the course. “They” just told us to start running, we’d find our way.
When we start the day with our new ‘basic’ approach, we might not know where the finish line is but we can certainly see how far we’ve already traveled. Just in the last 5 months, we are noticing her path continues to curve yet it’s added new lanes!
The Bryn Mawr team has been pushing Corey to try more challenging exercises and she’s cooperating!
Anne, OT, tested her physical strength with a grip test. She squeezed a clamp measuring 40lbs with her right hand and 20lbs with her left. Corey has begun working with her left hand. Lifting a water bottle, stacking cones, holding a spatula to sauté her culinary creations at home. She’s using her left hand to grip/stabilize her shirt as her right hand maneuvers the fabric to dress herself.
Natalie, PT, continues to work her magic. Balance exercises has increased Corey’s hip, leg strength. Corey has been standing longer and now (holding onto a grab bar) can lift her left leg 2″ to toe tap targets positioned in front and to her side. The right leg is at 6″. I never liked the childhood song “Hokie Pokie” until now!
The Bryn Mawr team has also noticed Corey’s increased awareness and attention. That is the direct result in her work with Dr. A weekly. The ladies have begun “Brain Games”. A computer program that has not only increased attention span but mental response time. Corey can now concentrate on a task for 25 minutes before she fatigues. The assorted games will eventually (we hope) improve short term and long term memory, analytical thinking, multi-tasking and problem solving. The ladies are also beginning to ‘discuss’ Corey’s anxiety and fears. This has helped me, Caitlin and our nursing staff tremendously. Corey does not remember her conversations but has enabled Dr. A to give us suggestions as to how we can better understand the origin of the outbursts, as well as how we can reassure Corey to work through her emotions.
Sometimes we become so familiar with our routine and coping strategies, that we forget how important they are. We can’t afford to ignore the basics as we start each day. My friend reminded me ‘significant results come from the most tedious efforts’.
Remember the basics…add whipped cream to your morning coffee; they are the healthy calories to start your day. xoxo
4yrs; Day 1676 – sleep study
Hi Everyone,
I’m not sure if I posted about our visit to Thomas Jefferson’s Sleep Study Center last week. As you know, Corey does not sleep through the night. Her latest medication addition has helped but she continues to have many fitful nights.
The center wired her for sleep and seizures. Corey handled the preparation well. She sat patiently for more than 45 minutes as her tech placed wires on her head, arms and legs. She jokingly asked me, “is this a good look for me”? I couldn’t resist responding, “I don’t know if it’s a good look for you but we’re going to get great radio reception tonight”!
I am looking forward to next tuesday when we have the follow-up visit to hear the results. Corinne has been visiting again and she’s decided sleep is highly over rated.
My novice research has found nearly all head-injured patients have some form of sleep disorder. This is confusing because people with head injuries can also have a fatigue disorder. You would think people with a fatigue disorder would want to sleep all the time or would sleep like rocks? Many have both problems.
Corey, of course, doesn’t fit any mold. She not only doesn’t sleep through the night, she doesn’t nap during the day and her memory loss has her convinced (with vehement debate) that she sleeps through the night. She has no memory of waking several times, violently screaming or saying ‘mean things’.
Between 1-5am, our house is more awake than it is during the day. She can hear the cats walking on the carpet!
“The amount of sleep required by the average person is five minutes more.”
-Wilson Mizener
“People say, ‘I’m going to sleep now,’ as if it were nothing. But it’s really a bizarre activity. ‘For the next several hours, while the sun is gone, I’m going to become unconscious, temporarily losing command over everything I know and understand. When the sun returns, I will resume my life.’
If you didn’t know what sleep was, and you had only seen it in a science fiction movie, you would think it was weird and tell all your friends about the movie you’d seen.
They had these people, you know? And they would walk around all day and be OK? And then, once a day, usually after dark, they would lie down on these special platforms and become unconscious. They would stop functioning almost completely, except deep in their minds they would have adventures and experiences that were completely impossible in real life. As they lay there, completely vulnerable to their enemies, their only movements were to occasionally shift from one position to another; or, if one of the ‘mind adventures’ got too real, they would sit up and scream and be glad they weren’t unconscious anymore. Then they would drink a lot of coffee.’
So, next time you see someone sleeping, make believe you’re in a science fiction movie. And whisper, ‘The creature is regenerating itself.”
― George Carlin,
xoxo
4yrs; 7 months- from Corey; another TBI goodbye
Hi everyone this is Corey,
we had a sad call. there is a boy i know but we never really met. we knew of each other because we both suffered the same injury of our brain.
unfortunately he never got a second chance to get better and i am trying very hard to take mine.
i know this is not my whole life. I have a life ahead of me. i was thinking that every day is actually a second chance for every body.
i get so angry i can not walk by myself and people have to help me with everything. i sometimes want to give up but i know that boy didn’t get his second chance and it gives me more motivation to keep trying.
remember that not everybody gets a second chance so since you have one, take advantage of your day, xoxo
4yrs; Day 1670 – forever seeking ‘normal’
Hi Everyone,
Corey’s had a few difficult days. Her awareness brings many emotions she’s not used to working through. This piece of cognitive/emotional growth is significant but frustrating for her and for us.
When she identifies her anxiety or fear, we try to enhance her insight with the factual information that supports how she could appropriately respond to the scenario. Seems like a “normal” strategy to intellectually resolve a conflict, wouldn’t you think?
Corey appears to understand the explanation and within seconds, repeats the same concern but with an escalated reaction. She argues, becomes aggressive and instead of our deescalating the crisis it leads to further aggression and yelling. She repeatedly demands an answer, “when will I be normal”? Our “new normal” reveals itself again…we are living with brain injury.
Once again I seek the words that will calm, inspire, motivate and strengthen our mantra ‘Never Give Up and Never Give In’. Kara Swanson, a speaker within the brain injury community, wrote the words of encouragement we needed to read today. As I read her blog entry, her words transcended our current challenge and I thought it applied to all of us. I hope you find her words to be as comforting and encouraging as we did, xoxo
Forever Seeking “Normal” ~ Kara Swanson’s brain injury blog Dec. 16, 2008
In my travels around the country speaking to the brain injury community, and during the time I’ve spent counseling survivors on line, I’m so often confronted with people who are so heart broken and frustrated and angry because they are no longer “normal” and will, likely, never be.
I tell them how normal they really are. Normal that they would be frustrated and heart broken by an injury that takes so much. Angry. Scared. Brain injury is no gig for sissies.
But I remind them that they are normal in a bigger way. That NOBODY gets through life unscathed. Nobody. Everyone has or will have that condition, disease, accident, injury or event in their lives that knocks them sideways and turns their life upside down. It’s one of the prices we pay for the gift of living.
I tell them, “Don’t be normal. Be better than normal!” We haven’t been put into a box because of this; we’ve just broken out of it. Armed with unique perspective on how quickly life can change and how blessed we are to still be alive. The survivors of this injury and like conditions/situations get to learn what many don’t learn until later in life.
This is a gift. An opportunity. A door blowing wide open. It’s a chance to decide that life really is too short and that there is no time for bad relationships, grudges held and mean spiritedness. Truly. What’s the point? How many years is enough to stay in a bad marriage, to hate a loved one for a misdeed you can’t even recall, or to keep taking back that abusive person promising never to hurt you again?
People are seeking the greener grass that doesn’t exist. Nobody is normal and everyone is. Nobody struggles like me and everyone does. It’s life. And sometimes life comes knocking sooner and sometimes later but it does come knocking. And it might wear a hundred different coats but eventually it breaks everyone’s heart.
Beginning to successfully recover from brain injury, regardless of how many symptoms persist, occurs in that moment when you lay down the anger because it no longer serves you. When you stop counting things lost and start noting things gained and left and still available. When you start laughing at yourself again.
I often think of brain injury recovery as waiting for a bus. You sit at the bus stop waiting and waiting and waiting for the bus to come. To be healed. To be returned to the life you chose. And then…one glorious day, you simply get up and start walking.
4yrs; Day 1668 – daily messages
Hi Everyone,
We all receive daily messages and I’m not speaking of voicemail or texts. They can come to us in many ways; a sentence that strikes a cord, a word that stands out on a billboard, a call from an old friend, a gut feeling or a random dream.
Our world’s static, our present state of preoccupation or the negative energies we battle often masks the clarity of the message we’re meant to hear. Our second challenge comes with understanding its meaning which requires an open heart and an open mind.
Take time to stop for just a minute and listen. Reacquaint yourself with your intuition. The concerns of the world can wait. When you’re still, you will know without thinking why and what you are working towards. Allow your vision to speak to you. Keep fighting to move forward and remember others are watching and learning thru your process. You are someone’s inspiration to take a chance, to speak up, to try something new, to keep dreaming, xoxo