Lisa’s Story

 

The Girlfriend’s Guide to TBI

Or Everything Your Doctor Won’t Tell You

When I was first told I had a traumatic brain injury (TBI) I thought “Well, duh, just look at my head!”   It was swollen and stapled together from a craniotomy – of course I knew I had a TBI!  Along with the obvious, though, I also knew that I was given a rare opportunity.  If you do the math, the chance of someone surviving 2 cerebral ruptures is only 1/10 of 1%, and  I was one of those improbable survivors.  It was like winning the “Second Chance at Life Lottery”, a prize that was both astounding and wonderful, yet carried with it a steep tax burden that wouldn’t be easy to pay.

February 1, 2005 was a miserable snowy day. Regardless, I reported to my first job that day and was driving to my second job when I passed out and apparently skidded off the road, free-falling over a 60 foot embankment. A brain aneurism in my right middle cerebral artery had burst, instantly filling my head with blood and knocking me out cold.  I don’t know how, but I miraculously avoided flipping my Jeep Cherokee or hitting every tree in my path on the way down. Someone in a blue pick-up truck saw fresh car tracks in the snow, called 911, and then left once the police arrived. I will forever be indebted to you, Mystery Person in the Blue Truck, because without you, I may not be here today.

I was taken by ambulance to Albany Medical Center and when my husband, Nate, arrived at the hospital, the doctors told him to say his goodbyes – I probably wouldn’t make it through surgery.  I survived the surgery, only to find that my ordeal was just beginning.   After weeks of grueling therapy I looked at Nate and told him “my head feels funny”.  He rushed me back to the hospital where they found a second “pseudo” aneurysm bleeding.  A shunt was surgically placed, but at my six month check up, the aneurysm was growing.  There was no choice but to operate, so, during yet another surgery – this one 23 hours long –  a bypass artery was placed to allow proper blood flow .

My railroad head

Yes, I beat the odds again and survived that third surgery, too.  But no one could prepare me for what was to follow.  My physical balance was gone and my hands wouldn’t work. I had to relearn how to relate to people and what was appropriate to say. I have a tendency, like most brain injured people, to just say whatever I am thinking at the moment. As you can imagine, this was a poor way for me to make friends or keep the ones I already had. I also noticed that I had lost my ability to multi-task in any way – just talking on my cell phone while walking through a store was a disaster – me, crashing into people and products set up in the aisle. I could no longer make a quick decision or solve a problem. Even going to get ice cream usually resulted in just picking the first flavor I saw and dealing with it later because I was too overwhelmed to make an actual decision. “Are you sure you want bubble gum ice cream, honey?” Nate would ask, well aware of what I was doing but not knowing exactly how he could help me.

It didn’t take me long to figure out that maneuvering through my new world wasn’t going to be easy. Unfortunately, I also discovered that help was hard to find.  I remember early on in recovery wondering if all the “weird” things I was experiencing were indeed “normal” after an aneurysm. Of course, all the doctors could offer me was a shrug of their shoulders and a “it is a function of the brain”. No.  Not much help at all.  One day, out of desperation,  I  found myself wandering through the isles in the library, searching for the almost non-existent book about how to recover from a brain injury when I came across a book entitled, The Girlfriends’ Guide to Pregnancy: Or Everything Your Doctor Won’t Tell You, written by Vicki Iovine. Okay, NO, I DID NOT read the book or even flip through it for that matter, I don’t want to know what it has to say, but the title caught my eye.   I had an idea.  Childbirth is another one of those things that never goes quite the way the glossy brochures in the doctor’s office say it will, so I thought , hmmm – it might make for an interesting blog post to take the same approach.

For those of you who don’t know me well, I realize there is nothing funny about how the brain deals with a TBI. Neither am I minimizing the fear and anxiety that follows. This is just my feeble attempt to cope with all I have been through and hopefully make you smile!

Okay, here it goes:      

“The Girlfriend’s Guide to TBI:  Or Everything Your Doctor Won’t Tell You”.

1. I choke on my own spit daily now (probably the lingering effects of a stroke).  If this happens to you, blame it on your TBI.

2. I get hiccups after eating or drinking. I blame this on my stroke, too, so feel free to add your own twist.

3. I can no longer “hurry”. My brain just shuts down if I have to do anything quickly!  Feel free to shut down on a regular basis.

4. I constantly unlock my house, go back inside, and then lock it again from the inside – only to find the keys are still hanging in the door.  I do this every time –  I still haven’t mastered the sequence five years later!

5. I didn’t have an appetite for years. I had to set a timer to remind me to eat or I would forget.  Chocolate, of course, can always be your exception.

6. For about a year, simply taking a shower would require a nap to follow.   It was so exhausting!

7. I used to walk through the grocery store saying the name of each item I saw. I had to do this or I wouldn’t recognize what I was looking for. For example, I would be looking for tea and walk right past it unless I was actually saying it out loud. I even once asked somebody if I was really seeing cake mix because the store had been re-organized and I was sure the aisle I just went down used to have juice in it. Can you imagine what that poor person was thinking?  They probably went to look for a butterfly net……

8. When you take a nap, you will wake up convinced it is the next day.   There will not be a person anywhere who can talk you out of this.

9. If doctors tells you that parts of your brain have died as a result of the bleed/stroke, they are probably right. Arguing with them will not change this fact.  It is OK.  Even “normal” people only use a small percentage of their fully living brain.

10. Feeling “numb” is normal. It feels like you are just watching the world go on but you are not actually a part of it. Perhaps it is sheer exhaustion and perhaps the brain can’t keep up with such a rapid world!

11. I would randomly vomit from time to time. Poor Nate (my hubby) has often been an involuntary human shield. I think I have had every organ and system checked for proper functioning. It always checks out okay, so doctors just shrug their shoulders and say “it is a function of the brain”.  Yeah, yeah.

12. Okay, Ladies, let’s just get real for a moment. While swimming offers a buoyancy effect that is helpful for those with paralyzed extremities, the thought of putting on a swimsuit in March is not a favorite thing for any women of any age. I was a pale, bag of bones who hadn’t shaved since February 1st (possibly longer). Shaving was painful as you can imagine! To make matters worse, my whole central nervous system was frazzled and  all sensory input felt like another assault.  So, feel free not to shave (unfortunately, you can’t skip the swimsuit).

13. Dialing a phone number was a nightmare and often impossible to do. I could not transfer a number from one place to another. Also, I tried to balance the neglected checkbook once and it caused a massive meltdown!!!

14. Talking too much makes me nauseous.

15. When I sleep now, I just radiate heat for some reason?

16. At first, I had to have my husband, Nate, sit down with me to help plan the next day. We would write numbers next to the event in my planner so I could figure out how to execute the activities for that day. It is 5 years later and I still need his help sometimes (but now I can usually do it by myself… I think).

17. All time and events are measured by my aneurysm rupture.  Everything is either “that was before my aneurysm” or “that was after my aneurysm”.

18. My short-term memory was terrible but it is slowly improving. I still have to write EVERYTHING down in my daily planner, though.

19. I was an emotional basket case. I cried at literally everything (even answering a phone), until I was put on a mood stabilizer.

20. I will say that the gift of Moonlight Path Body Wash and Lotion from my friend’s, The Masons, was just what I needed to feel just a little bit more human. Oh, to not smell like a hospital was, and still is, priceless!

21.  My faith has carried me through, along with the love and support of an amazing husband, family and friends. A good friend once told me, “Lisa, no matter how many time you fail, you are not a failure!  I don’t know about you, but sometimes I still need to hear that from time to time.

22. Finally, I want to share what I consider the thing that makes every pain-staking minute of recovery worthwhile.  The “silver lining”, if you will, is ALL OF THE MOMENTS OF LIFE I didn’t miss out on –  thanks to my exceptional good fortune of surviving the odds.

Thanks for listening.  Love to all of you,  Lisa

PS:  If you get a chance, check out my blog at:

walkingtalkingmiracle.blogspot.com

Words of Wisdom from Lisa’s husband, Nate

“You just have to be patient and faithful, that’s the only advice I have.”

Lisa’s story was condensed from Lisa’s blog, *Walking*Talking*Miracle

Written by Lisa W.

Paula Schmidt, Editor

You can also read Lisa’s Story on Brainline:  http://www.brainline.org/content/2012/03/the-girlfriends-guide-to-tbi-or-everything-your-doctor-wont-tell-you.html

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Tim’s Story

 

1975 was a year of ups and downs for me.  It was the year I met my childhood sweetheart and wife, Wendy, and the year my body was telling me that something was terribly wrong.

I was only 14 years old at the time, but I was suffering from excruciating migraines. They weren’t like other people’s migraines.  Mine began with my right foot falling asleep.   The feeling would then move up the side of my body and through to my right hand.  My peripheral vision would soon disappear and then I would get sick to my stomach.  My face would go numb and my speech was affected to the point where I was unable to form words.  There was only one word I could say – a four letter one – but at least it described how I felt. All I could do was go into my room and bury my head in my pillow, begging for sleep just to rid myself of the pain.

A doctor soon discovered that I had an Arterio-Venous Malformation and said something about irregular blood vessels in my brain. At 14, I didn’t fully comprehend the impact of those words, but I was glad that there was finally a reason for the horrible migraines I had experienced for much of my life.  Surgery wasn’t an option in 1975.   The only treatment I received was Dilantin to prevent seizures, but, like most teenagers, I didn’t want to stick to a regiment.  Besides, the medication made me feel worse than the headaches, so I stopped taking my pills and went on with my life.

Getting on with my life was easy because it was also the year that I met Wendy.   I took her fishing in a little row boat at Sand Lake in West Port, Ontario.  She almost flipped the boat over when she stepped on the side of it, but that was OK.  I was already in love.  We dated for a long time before we got married because it was our dream to own a house of our own first.  We saved every penny we could until, many years after we met, our dream house finally became a reality.  We stayed in our new home for the first time on our wedding night, February 14^th, 1987, on Valentine’s Day.  We have been in the same house ever since.

Wendy and I at home

Seven years after we were married we took a trip to Disney World in Florida and saw a dolphin performance.  At the show, the instructor mentioned that if we became certified to scuba dive, we could dive with the dolphins, too.  So, once again, we saved for our dream.  This time, our dream was to dive with the dolphins at Key Largo, Florida.  Wendy and I got our open water diving certifications and we made our first diving trip in 1996.  We took many diving trips after that first one, too.  Life was good.

Wendy and I at Key Largo, Florida

It was during one of those diving trips, though, that things began to change.  I dove into the ocean on that fateful sunny day in 2003 and descended to 60 feet below the water’s surface, checking  the reading on my depth gauge, as usual.  I knew immediately that something wasn’t right because I felt dazed and confused – I couldn’t seem to understand what I was reading.  I motioned to my dive buddy, Dom, and we surfaced.  He quickly drove the boat back to the marina and it was there that I had my first seizure. In hindsight, I am grateful that I didn’t have the seizure while I was under water.  That could have been disastrous.

Me, 2004, just before my bleed

A few months later, I underwent gamma knife surgery to shrink the malformation and things seemed to be looking up.   But by the following year, I had another strange feeling – not one of an oncoming seizure, but one of urgency and dread.  I told Wendy that I had a premonition that I was going to die.  The feeling seemed unwarranted.  After all, the surgery was working, the AVM was shrinking, and all seemed well.   But I still  felt a dire need to tell Wendy that she needed to prepare for the worst.  This was something she did not want to talk about, but it was something she would soon find herself facing – first hand.

It was in August, 2004, when my life took a giant detour.  Wendy was supposed to be away on a canoe trip with a group of friends, but, at the last minute, she decided to cancel her trip.  I am grateful that she did because without her I would not be here today.  She is the one who found me that morning and called 911.  The AVM had burst, pooling blood into my brain.  The paramedics who arrived at the house did not think I would make it to the hospital.  But I made it, only to find that the staff at the hospital had their own doubts whether I would live.   I was moved to Syracuse for acute care and given little hope of survival from the staff there as well.

After a month long coma, I finally woke up.  But instead of feeling immediate joy, I felt only fear.  It wasn’t the strangely sterile hospital surroundings or the fact that I had survived a brain bleed that frightened me, though.  I had the comfort of waking up to a room full of familiar faces, something that should have made me feel calm and happy. But it didn’t.  As I looked around the room, I saw everyone except the one person I wanted to see most. Wendy.  I didn’t want my family to see how terrified I was, but the panicked look on my face probably gave me away.  Much to my relief, I finally spotted her, sitting behind her mother.  It was then that I knew everything would be alright.

Rehab consumed much of my time.  My new goal was to get back to work, in spite of the fact that my doctor said I would never be able to work in the same capacity again.  Regardless of his warnings, I went back to work anyway.  I just wanted proof that I could no longer do the job I had done for 14 years, that’s all.  I wanted him to be wrong, and for a while, it seemed like he was.   I worked hard, putting in overtime and catching up on my skills.  I was, once again, a draftsman, and I did a good job, but an unforeseen company-wide layoff meant I had to leave my line of work.  This was more depressing than anything I had faced so far, but at least I had proven to myself that I could do it!

It has been over seven years now since my AVM ruptured and rocked my world.  Though my life is different now than it was before my injury, I don’t have many complaints.  I am, gratefully, working again, though in a different capacity.   Life changes.  I just had to learn to change with it.  My hope is to one day find a draftsman position, and I know, with the skills and determination I learned from surviving a TBI,  I will find one soon.

I am grateful to all those who helped me in my path. Because of my good friends, the medical staff, and my loving family, I am alive today.  Most of all, I am grateful to Wendy, who stayed by my side through all the ups and downs.  This Valentine’s Day will be our 25^th wedding anniversary.  Wendy saved my life.  It is like we are soul mates.  We are meant to be together for our entire lives.  Happy Anniversary, Wendy.  And Happy Valentine’s Day. You are the love of my life.

Note From Tim to Caregivers:

“Be Kind to the person you are taking care of. They may be saying things that they would not normally say or do but it is not them saying or doing the things they are doing. Be patient with them and give them a hug regularly. Give them time to heal. I used some dirty words and said things that I would not normally say when I was recovering from my bleed.”

Note From Wendy to Caregivers:

“I would just like to add that the most frustrating thing for me was not getting any support after the bleed. It seemed that Tim was the first one to go through this and the doctors and nurses couldn’t help me. I had to fight for Tim while he was in the hospital and for him at home.  He was released from Rehab because he didn’t have a physical ailment. We had to take him home, but then the question was now what…he needs help.  We found a doctor in the area that he could go to for sessions to help him get back on track. But it was almost like someone else was in Tim’s body. He wasn’t the same person he was and that was hard.  All I can say is that there is no guidebook to help when this happens, but thank goodness for BIANYS and others I have found now to raise awareness about TBI. When this happened we had nowhere to turn. My wish now is that in every waiting room or emergency room, that there is a brochure of information for family and friends to have to turn to in their hour of need when their loved one suffers from a TBI.

If you are reading this and feel alone, you are not.  I would like to share some things with you.  I never believed what the doctors said about Tim living in a nursing home because in my mind that is not how it was going to be. Just say everyday (more than once is better) that all is well–say it aloud to your loved one or whisper in their ear…tell your family and friends and have them say it. Picture in your mind your loved one healthy.  I pictured Tim healthy and that he would walk out of the hospital on his own which he did.  Really there is no limit as to what you can do once you put your heart and mind to it.  Keep a positive attitude and take one day at a time.

To you, Tim, Happy 25th anniversary and Valentines Day.  All is well.”

written by Tim T., Wendy T, and Paula Schmidt  for braininjurystories.org

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Miranda’s Story

Check out Miranda’s poem, The Lonely Tree, under the artworks section

*Miranda wanted her story to be told, but when it came time to write it she couldn’t do it.  She asked me, her mom, to tell her story for her.

This is Miranda’s Story

Growing up Miranda was a shy little girl with a big heart.  She was the one who would always stand up for the classmate who was different when the other children were making fun of them.  Her thoughtfulness was demonstrated by how she would always bring a piece of birthday cake home for her little sister from a party that she attended.  She worked hard to get good grades and wanted to become a doctor.  She later changed her mind after an internship at a hospital enabled her to work amongst doctors.  One of the physicians discouraged her and told her that if he had the choice he wouldn’t do it again.  The financial burden and time dedicated to the profession left little time for a family.  Miranda wanted to have a family so she chose to pursue a career as a physician’s assistant instead.  She thought it was a wise choice because she could still “act” as a doctor and have the family she desired as well.

Miranda pursued her dream and was accepted into Kings College in Wilkes-Barre, PA to begin the P.A. Program.   She was taking an accelerated curriculum and would receive her Masters in 5 years.  One of the requirements was to compete 1000 hours as a CNA (Certified Nurse’s Aide).   Miranda fulfilled this obligation at a local nursing home during her school breaks.  It was during this time that I witnessed the magnitude of Miranda’s compassion.  It was the Holiday season and Miranda was working at the nursing home.  She was saddened by the number of residents who didn’t get a visitor on Thanksgiving Day.  She decided that she would visit the residents on Christmas day and set out to make each one a gift.  With the little money she earned, she bought lace, ribbon and potpourri form AC Moore and made little sachets for each one.  On Christmas Day she announced that she was going to the nursing home to visit her patients.  She invited me to accompany her and I will be forever grateful that I did as it has become one of my fondest memories of “before the accident”.    I witnessed firsthand the joy on each resident’s face as Miranda handed them her little token gift she had made.  The first room we entered was occupied by an elderly woman who was lying in her bed.  When she looked up and saw Miranda her whole face lit up.  She smiled as she grasped Miranda’s hand in her own and said “thank you, thank you” over and over again.  She looked at me and told me that Miranda was her angel from God.  I was moved to tears and had to leave the room.  A similar scenario played out as we visited each resident.  They were all so happy to see her.  It’s ironic that in a short period of time I would be faced with the decision whether or not to place Miranda, at the age of 20, in a nursing home.

Miranda had just completed her second year as a student at King’s College when she had her accident.    She was on summer break when she was invited by high school friends to meet in Austin, TX for a reunion of sorts.  Miranda was excited to reunite with old friends and looked forward to the vacation.  It was August 6, 2000 when the phone rang at 11:30 at night.  I was about to live a parent’s worst nightmare.   Miranda had been involved in an automobile accident, the voice on the other end said.  It was serious and I was told to get to Austin as soon as possible.   Nothing can prepare a family for the whirlwind of emotions, fears and turmoil that was about to consume my life.

Miranda was a front seat passenger of a car which turned into the oncoming path of a van travelling at a high rate of speed, trying to make it through the light before it changed to red.    The seatbelt she wore did very little to save her from catastrophic injuries.  Miranda suffered a diffuse axonal injury to her brain, a c6 vertebrae fracture, a broken pelvis, fractures to both collarbones, and a crushed hand.  When I first walked into the ICU to see Miranda I was not prepared for what I saw.  Her beautiful waist length hair had been shaven on half of her head, revealing a large red incision that extended down the side of her scalp.  There was dried blood on her face and her eyes bulged slightly open from the swelling in her brain giving the appearance that she was awake, but she wasn’t.  My senses went into overload as my eyes took note of all the tubes emerging from her body.  The machines keeping her alive beeped and seemed to echo in my head.  I fell to my knees in prayer at her bedside on the cold hard tile floor of that ICU room and prayed for her life.

That night Miranda’s lungs began to fill with fluid and I answered another late night call summoning me to the hospital for the second night in a row.  This time I was just across the street at a Ronald McDonald House and quickly went to the hospital.  Somehow Miranda made it through yet another emergency surgery procedure that night.   The long journey back was about to begin.

After several weeks in ICU Miranda was airlifted to New York to begin her recovery while I returned to work.  To survive a traumatic brain injury is like being reborn as someone else.  The old Miranda was gone and a new Miranda awakened from the coma.  Miranda needed to learn to talk, eat and walk again.   It took 2 years before she was finally released from institutional care.  She had been in 2 hospitals and 3 rehab centers during this time and had endured multiple surgeries.   A nursing home was recommended.  I felt helpless until I met someone who introduced me to a FACTS coordinator with the Brain Injury Association.  Robin was a Godsend to me at a very difficult time in my life.  She helped me find a program called the TBI Waiver that enabled Miranda to live at home rather than a nursing home.  I was so grateful!

Miranda faces a multitude of daily challenges.  The pain she endures is a daily occurrence from the multiple injuries she received.  I believe that the fractures didn’t heal right because the doctors were focused on the brain injury and life saving measures rather than setting bones.  Consequently her frame is somewhat twisted and doesn’t align anymore.  It took 2 years before Miranda was able to give up her wheelchair and use a walker to ambulate.  The awkwardness of her gait and her misaligned stance causes joints and ligaments to ache from the effort.  I sometimes wonder if it would be better for her to return to the wheelchair to avoid the constant pain.

I asked Miranda what she wanted her message to be in this story.  Miranda said that she missed her old life and that she still loved her old boyfriend and the friends she had at the time of the accident, even though they didn’t stay in touch after the accident.  She said she loved the Structured Day Program she attends as it enables her to create new friendships.  She said “I have come a long way since that doctor said I was in a vegetative state, haven’t I mom?”  I agreed that she had.  She continued “I still want to return to school and become a PA. “   She then looked into my eyes and asked me “Do you think I can, mom”?  I felt the tears stinging in my eyes again as I replied “Maybe, anything is possible.  Maybe a new treatment someday will make that a reality”.  She looked away and shrugged “Maybe”, she said.

In the meantime, Miranda maintains a sense of humor and enjoys her friends at the Structured Day Program at Compassionate Care of CNY.   She continues to touch the lives of many – as she did when she worked in the nursing home so many years ago, just in a different way.  Her resilience and endurance for life has put new meaning in the words “live each day as if it were our last”.

Miranda inspired me to create Compassionate Care of CNY to assist others with brain injury and help them to build new, lasting relationships.   For more information on Compassionate Care of CNY, visit our website at:

www.tbicare.com

Miranda’s Words of Wisdom

Dear Fellow Survivors,

My life changed dramatically that day, but I have learned a lot since then.  Things happen.  That’s just the way it goes.   You can’t change the past, but hang in there.  Things do get better if you let it.  Just keep on truckin’.  That’s my best advice.

Dear Caregivers,

My mom is my hero.  I tell everyone that whenever I get the chance.  She started an agency  for survivors of traumatic brain injury so that I, and others like me, could have the supports we need to improve our lives.  I have come a long way because of her and the people who work at Compassionate Care.  They are a great bunch of people and I love them all very much.  Especially you, Mom.

I think I speak for all survivors out there when I say we appreciate all that our caregivers do for us.  Thank you, all of you.  You just don’t know how much we need you.

Written by Cindy S. and Miranda S. for braininjurystories.org

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