First, I would like to thank Mrs. Ann Boriskie for requesting my story, and the opportunity to share it with others through the Brain Injury Peer Visitor Association® website. I hope that it might help at least one person to find some encouragement and possibly an answer to a question or problem with which they may be dealing or struggling.
I have had at least four brain injuries thus far in life that I am aware of. The first two were not diagnosed; however, common sense would dictate the odds of a concussion would be rather high.
My first brain injury that I recall, and would hazard a guess was likely at least a mild concussion, would be at the age of 12, when I was hit in the back of my head with a baseball bat. I do not remember much of it, other than my head really hurt and there was a serious goose egg there.
My next brain injury occurred while I was on active duty in the Marine Corps and stationed overseas in Scotland. I was on the Marine Flag Football team and it was the last practice before the first game. I was on defense, and the captain of the defense called my number, and his, to blitz. It was a running play; I was chasing the running back toward the defensive captain. At the last second, the running back sidestepped and I ran into the defensive captain, hitting his shoulder with my face. Two physical entities going in opposite directions, and I ended up fracturing my nose and my neck in two places each — likely another concussion.
With brain injuries not of much concern back then, there was no consideration of a likely moderate-to-severe concussion. Interestingly, even though it was explained to the medical personnel how the accident occurred, they did not examine my neck or consider that it might be injured, also. Those injuries occurred in August 1987; however, it was not until approximately April of 1990 when the fracture of my C6 and C7 vertebrae was diagnosed. The damage had already occurred and the healing largely complete by that time.
This brings us to brain injuries #3 and #4. They are connected or related, but separated by nearly seven months. I would not know what the problem was for about five of those months. What I eventually found out was that I had sustained a brain bleed the first week of May 2012. There was no preceding head trauma, injury, slip, fall, or other direct causative event to suggest a brain injury. I believe the bleed occurred sometime during the night from Thursday into Friday.
The first clue that something was wrong was when I went to read in the morning but could not. I had read without any problems the night before, but now I could see the words and knew they made sentences; however, NOTHING made any sense. Then when I tried to concentrate harder and "force" myself to read, the front of my brain literally hurt! The ache, which I would later call a "brain-ache," was unlike any headache, including migraines, that I had ever had before!
The next clue was the incredible level and intensity of fatigue. It was either the first or the second Saturday after the bleed that I went outside and spent about two hours watering the vegetable garden and some flower gardens. Virtually no effort involved, yet when I came inside, my brain said, "Sleepy time!" I was rather pissed off with the heavy desire or feeling to go to sleep after having done virtually nothing! Therefore, I fought taking a nap for a few hours until the "brain-ache" became unbearable. I then lay down and slept for about two hours or so, and I still felt tired when I got up. The fatigue became more and more noticeable in nearly everything I did. Anything that used to be easy and required little thought was now sometimes confusing and quite laborious. One example would be making some new recipe (and I'm not a great cook, so any recipes I did get would have to be simple and easy to do). Now, I could not keep track of what step I was on, if I had used an ingredient, had I used the correct amount(s), and so forth.
My attempting any new recipes did not occur, except for once, until about two months after the onset of the initial symptoms when there were some improvements — being able to read again was one.
Another clue that something was considerably wrong was my going to church and not knowing people's names whom I had known for five to ten years or more. I would vaguely recognize someone's face, but absolutely no inkling of a name would be forthcoming. Additionally, I felt overwhelmed with the noise of people talking and the visual stimulation of people milling about. I also could not follow along with the singing and the sermon, and immediately after everything was over I could not remember any of them.
With no obvious prior event to suggest a physical problem, I thought that perhaps I was having a mental breakdown. So, I looked for, found, and began seeing a psychiatrist. Through some counseling and testing, it was determined that I had no mental issues, including PTSD, to suggest an identifiable psychological cause to the symptoms. The recommendation, then, was that I seek a medical examination for a possible physical identification of the problem(s).
It was around the early part of July when I began seeking medical testing through the local VA hospital. The first testing, including blood work, a CT scan, and physical examination, found nothing suspicious at the Emergency Department, and I was referred back to a Primary Care Physician. Various other testing and examinations also found nothing of consequence until an MRI scan found an abnormality.
The resident neurosurgeon said that I had a "Cavernoma Malformation with Lesion." I had never heard of such a thing and with good reason. Research has found that in autopsies, it has been identified in only about 2.4% of cases. As it was explained to me, a Cavernoma Malformation is a cluster of capillaries that do not form correctly, likely from birth. They form into a ball; mine was roughly the shape, size, and appearance of a blackberry. It is believed that they are also weak and likely bleed continuously, just in such small amounts that no symptoms or problems present themselves.
Based on my general health and with no prior symptoms, it was estimated that I had a 1% chance per year (accumulating each year) that a significant bleed could occur. I was 44 at the time; thus I had a 44% chance of a significant bleed. Initially, the resident neurosurgeon thought that surgery might not be recommended, as improvements in the symptoms were occurring. That diagnosis and recommendation occurred near the end of October, if memory serves.
However, when further consultation with an experienced neurosurgeon took place, surgery was recommended due to the increasing possibility of another significant or bad bleed occurring while the cavernoma remained. The results of a "bad bleed" could include total memory loss, stroke, coma, and/or death. The odds of a bad outcome from surgery were estimated to be 10-15%. Seeing no other viable option, I chose to go ahead with the surgery, which resulted in my fourth brain injury. Incidentally, the location of the cavernoma was in my hippocampus, which is very near the center of the brain and offset about an inch to the left side. (As I understand it, the hippocampus is directly involved with memory and recall issues.)
An intense MRI with contrast was ordered, from which the surgery map would be made. I believe, without looking back at my records, that the MRI occurred on either Thursday the 22nd or Friday the 23rd. The surgery occurred on Wednesday, November 28, 2012 and was five hours long. It began at 0900, and from when they gave me the knockout gas, I do not remember but a few very fuzzy events until Thursday night around 2300 (11:00pm for any civilians out there) or later.
This brings us to the next phase or process, the Healing and Adapting phase.
Healing and Adapting
Some people might say the "recovery" phase or process. If you like that term, by all means use it. I do not, as to me, it denotes in some sense that a person may "recover" to a pre-injury state. I have yet to hear of ANYONE who has had a serious brain injury getting to a pre-brain injury state. For mild brain injuries like a concussion or less, that may be a possibility; however, I am talking about more serious brain injuries like a stroke, brain bleed, or other traumatic injury. As each person's traumatic brain injury, and the effects of it, is unique, the same is true of each person's healing and adapting. However, there are many similar experiences along the way for each survivor, his/her family, and friends.
First, life is forever changed! To some extent, the person I was (and the things I liked, disliked, and was able to do) has changed. As I write this portion, it is about 1½ years post-surgery. At this time, and having read once and now rereading the book Head Lights For Dark Roads by Mrs. Diane Quimby, I have come to learn a few things, and hopefully I will remember them. LOL!
A considerable loss and change has occurred, and with such, a person needs to grieve some and come to terms with it. However, the brain is damaged, and so coming to terms with the loss and change is more of a challenge. For one thing, understanding the full extent of the loss may not be possible. Additionally, unlike an injured extremity that can be immobilized while healing occurs, the brain needs to remain active and function as best it can. For many months after the surgery, life was quite confusing for me, and to some extent it still is today.
Things that used to be so easy and done without much if any thought, now take considerable effort, including thought, and may change from day to day or even within each day. Something such walking, which most people don't even give any conscious thought to, now may be difficult, taking conscious and deliberate thought, and might change throughout the day. For some hours in the morning and perhaps into the afternoon, I might be functioning well enough that I don't give much thought to walking. However, when the fatigue sets in, and the heavier it gets, mental functioning diminishes and I may have to go slower and be more deliberate and careful, especially when going up or down stairs.
I have recently begun to notice that my brain can handle a little more stimuli at once. Until about two or three weeks ago, if there was too much noise and/or visual stimuli, my brain would quickly be overwhelmed, would kind of shut down, and I would get a headache. Again, as the fatigue sets in and gets worse, I can handle less and less stimuli. Mrs. Quimby did a fantastic job of describing her experiences after the car accident, which has helped me to understand some things, including a better recognition of some of my own progress. As with the process of growth after birth that takes time and is sometimes painful, so too is the growth into the person I am becoming after the TBI.
The process is natural yet unique for each person. There may be some growth spurts and sometimes what seems like setbacks. The ability to accept the loss and ongoing change will also be unique, not only for the brain injury survivor, but also for the family and friends. Those closest to the brain injury survivor have also suffered the loss and sudden change of the person that was, and now the survivor who is growing into someone new. Depending on the cause, nature, and extent of the injury or injuries, those closest to the survivor, whether family or friends, may have to significantly alter their life in order to help the survivor.
One of the biggest and toughest challenges for all involved is the uncertainty of the outcome, including how long it may take the survivor to become stable, as well as a new person and who that person will be. With a baby, there was no "before" to compare with. With a brain injury survivor there was a "before" person and now there is the "after" and new person developing. There may be some of the "old" person there, but there will be changes. The more significant or extensive the brain injury, the more significant the change is likely to be.
I thank God that I am a Marine and that I have not forgotten that I am as I move forward! One of the mottos of the Corps is, "Improvise, Adapt, Overcome." I continue to improvise, adapt, and overcome every day and may likely have to for the rest of my life. Finding the Brain Injury Peer Visitor Association has been a GREAT help! Being able to talk with others who are going through, or have gone through, similar experiences is comforting and encouraging. I do have short- and long-term memory problems along with other issues, and may have for the rest of my life. I do not remember much of yesterday and what I do quickly fades. Not remembering the BAD days is good, but not remembering the good days, or anything I WANT to, rather sucks!
I would like to THANK Mrs. Ann Boriskie for establishing the Brain Injury Peer Visitor Association and the opportunity to share a little of my story with others. Perhaps something in it will be helpful to someone else? I will end with a quote that has become a favorite of mine, encouraging and helpful, especially on the BAD days.
"Yesterday is history,
Tomorrow is a mystery,
But today is a gift.
That is why it is called The Present."
Yesterday, even five minutes ago, is history and I likely won't remember it tomorrow. Tomorrow is a mystery which is too far away to think or worry about today, and is not guaranteed, either. Today is a gift, even with its various challenges and difficulties. Like searching for gold, what nuggets — whether people, things, or experiences — can I find and be thankful for today?
Have a GREAT, Present, day!
USMC, Cpl, '85-'89