Maddog and Tish – Their Story

     I had been in quite a few relationships for a young woman of 19, the year I met Maddog, my Joe.  Our story isn’t that grand or different, but when we met, it was magic. 

    I had been around bikers and veterans for most of my life so it wasn’t strange that I happened into a biker bar called Bonnie and Clyde’s. Joe was in the bar, playfully asking for kisses from all of the woman.  That was back when it was safe to do that sort of thing.  I was drinking seven and sevens and not feeling any pain. Joe came up to me and said it was his birthday and asked if I would give him a kiss and the rest, as they say, is history.  Joe and I go married on October 4, 1975.

     Before we met, neither of us had an easy life. We both suffered from wounded spirits.  Joe was (and still is) proud to be a Vietnam combat veteran, but he had suffered both physically and emotionally from his time there – 1968, during the Ted Offensive and the heat of the conflict. When we found each other, everything seemed possible again.  Joe was my life-line and my healer. 

   Skipping ahead, the early years together were fantastic.  Joe had a life-long dream of becoming a photographer, but his responsibility toward his family was strong. He stayed employed as a waste water treatment mechanic in order to put food on the table, placing his dream to the side until our sons were grown. 

     By the year 2005, we were looking ahead toward retirement.  Our sons were older and it was finally time for us. We had an Electra Glide Ultra Classic Harley and we planned to travel the country, just us, our bikes and an Airstream. Joe had taken courses at the New England School of Photography and the Art Institute of Boston.  He would finally get to become the photographer he always wanted to be. Given his pride in the USA, I can only imagine the beautiful photographs he would have taken while we toured cross-country.  We both had dreams and plans, but, as so often happens, they were taken away from us by a senseless accident.

      On August 17, 2005, at 3:45 p.m., Joe was riding his Harley home from the Veteran’s Administration when our lives changed forever.  He had stopped his Harley at a red light, waiting patiently for the light to turn green. An elderly woman blindsided his Harley, throwing Joe 30 feet in the air. She later claimed she didn’t see him.­­­­­­­­­­­­­­­­­­­­­­ Joe spent the next 2 ½ weeks in a coma, suffering from a blow to the head that caused a pseudo-aneurysm.  

     After he awoke from his coma, Joe spent a month in a rehabilitation facility then he was sent to a state nursing home to recover from his injuries.  This nursing home supposedly specialized in neuro-rehab, but they did a poor job.  The staff there didn’t deal well with bikers, either.  We are a different breed of people.  All they did was drug him up. It took me 16 months to get him out of that hell hole, but I fought every day until they finally released him home.  Fortunately for others, this nursing home has since shut down.

     We often live as shut-ins now, but, as my elderly friends say, at least we can rent a van and go places for the day.  As far as friends go, we have zip, nada, none.  Once Joe was injured, they all disappeared.  So we are alone again, like in the beginning.  Only, I get lonely for my Joe.  Joe was always a strong-willed man, and he still is, to some degree.  I miss the intimacy and the closeness we once had.  I have always had a hard time with other woman so Joe has always been my best friend.  When times are tough, I keep thinking in my mind what would Joe have done in this situation?  As a Vietnam combat soldier, Joe endured the horrors of the Tet Offensive. It took great strength and endurance, for which I am so proud.  I remember the Joe I used to know then I plod through, trying to take each day in stride.    That’s the influence Joe has had on my life. 

     Joe inspired his sons to be anything they wanted to be.  I guess you would call them successful.  Our youngest became a marine and a war veteran and our eldest son is a vice-president for a pharmaceutical advertising agency in New York.   We are proud of both of our sons.  Mostly though, our concern was that they grow into decent human beings.  The thing about life is, there is more to life than work, there is also your life! I think they learned this lesson well.

     My advice to caregivers is simple.  Take a deep breath.  It’s gonna be a bumpy ride, but if you love unconditionally, without reservation, and have faith in your own abilities, then you will be OK.  You will have to deal with state and federal morons – that is a given.   It is a very lonely lifestyle.  If you can handle the abject loneliness, then you will be alright.  You have the toughest job, but there are rewards. For me, my Joe is my world.  He healed me, and now I have his back.  My love for my Joe runs very deep.  No lousy accident will ever change that.

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

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 14th, 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 25th 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