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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