Cory’s Corner: A Personal Perspective
Article #4
Recovery of Sleep
Patterns of sleep heavily influence my functional abilities throughout the day. I became most aware of this at two pivotal points in my life; the first being the birth of my children, and the second while recovering from my brain aneurysm.
Anyone who ever had children has experienced just how precious a commodity sleep can be during the infancy of your child (and sometimes toddler stages too), when we as caretakers are at their “beck and call” 24 hours a day. This usually lasts until our little bundles of joy start sleeping through the night, and we can finally and mercifully return to normal sleep patterns.
Illnesses or hospitalizations can also cause interruptions in sleep patterns, as most hospitals operate (no pun intended) ‘round the clock’. This makes sense when we consider that illnesses, accidents, babies and all other medical needs occur on their own timelines, regardless of the hour, and you can pretty much count on having at least two to three interruptions of sleep each night during a stay in the hospital. During my stay in the hospital for the brain hemorrhage, I remember craving sleep, and catching any shut-eye I could, which was usually obtained in short spurts; especially during daylight hours.
A weird thing happens when you end up in the hospital for an extended period of time, or after a serious event-- people you haven’t seen in years come out of the woodwork to see you. While I loved and appreciated these visits, there were times when I could barely stay awake to acknowledge them, let alone carry on a conversation. That, together with the memory challenges of trying to remember who they were, and what our connection was, proved to be very taxing. My recommendation to those thinking of visiting friends or acquaintances in the hospital… send a card or call before visiting.
Another thing I noticed was hospitals can have a strange effect on some individuals. One family member that was visiting nearly passed out, and ended up occupying the adjoining hospital bed until she regained her equilibrium. (Perhaps it was the sight of my bald-head and sutures!)
Once home, my insatiable need for sleep became another huge issue as I could not get through a day without napping anywhere from 1-3 hours. That definitely put limitations on my life and rendered me fairly non-functional for many years. When I look back now, I’m amazed at the large volume of my life lost to napping and sleeping. I dealt with constant dizziness, weakness and fatigue on normal days and complete vertigo on my worst days, which was debilitating to say the least. I had no bearings on up, down, right or left and the only relief came from lying flat on my back with my eyes closed in order to stop the spinning.
Finally, after many years of dealing with this, I took my neurologists suggestion and tried anti-depressants and, lo and behold, found a measure of relief. For the longest time I had resisted this suggestion because I didn’t understand the logic behind or connection between depression and serotonin of which I was not producing enough. The anti-depressants provided the needed boost to my serotonin levels, which greatly improved my symptoms of fatigue, dizziness and vertigo. Who knew?
I still have “bad” days where dizziness reigns, but not anywhere near the degree it was before getting on the anti-depressant meds. Mental fatigue and stress definitely impact my physical stability and endurance to this day, especially when I am learning something new, in full concentration mode, or under stress or pressure. In terms of retaining information and my memory capacity, there are still large gaps for which I rely on technology (such as my iPhone) equipped with plenty of reminders to keep me on course. And yet, even with all these assists, I still occasionally drop the ball. This in turn impacts my confidence levels, and makes me question myself even more as I tend to be my own toughest critic. It’s a never-ending cycle of checking, rechecking and the constant fear of forgetting; it’s a tape I play over and over each day.
To date, I’m still unable to function at “normal” capacity, working an abbreviated workweek and resting most days for some period of time. From what I’ve been told by my doctors and therapists fatigue is one of the most common complaints following a brain injury, and apparently it’s something you just have to learn to live with. The obvious challenge becomes living independently and supporting oneself financially. This presents almost insurmountable obstacles, unless one is independently wealthy, or is receiving help through a disability program of some kind, which in and of itself is another almost insurmountable mountain to climb. More on that later… For now, I’m just grateful to be taking part in life again!
Article #3
Gaining Independence
We are rarely so grateful for the little gifts life affords us until we lose them, or risk losing them. We take mundane things for granted, like our ability to move freely, think clearly, and live independently never dreaming what our lives would be like if something catastrophic were to happen and these gifts were taken away.
Accidents or illnesses can strike any one of us at any time, usually with little to no warning, and our life plans are suddenly and tragically altered.
One of the hardest parts about becoming sick for me was my loss of independence. This started in the hospital where you lose every ounce of modesty and humility because you are rarely left alone, even for your most private tasks of self-care. Thankfully, the nursing staff has seen it all and is not fazed in the least by the sight of another person taking care of business as usual, and eventually these phobias subside. But in some circumstances, these changes may be permanent and one has to adapt to losing their independence indefinitely. I cannot describe how fortunate and grateful I feel to have been able to regain, over a long period of time, my independence and I try not to forget this.
I was hospitalized for six weeks, during which time a shift took place where I went from being scared and alone to becoming physically and emotionally attached to those on whose care I was dependent. Because I could not envision what my life at home “looked” like, as my memory was severely impaired, I longed to hang on to the new familiar because it was all I knew. I was also uncertain if and how I would be able to care for my young children independently and was fearful of being a burden on my family. Time and rehabilitation were my keys to returning to my old life, and having the support of my family went along way towards motivating those efforts. I longed for the simple pleasures of caring for my children as I once had, and while I very much needed and appreciated all the help from family and friends, it still felt very foreign and burdensome to have to ask for help.
I guess in a way this was a huge motivating factor in pushing through the pain and frustration to regain my life of independence, which I had so blindly taken for granted.
So what about those folks who face recovery without such a support system in place? Are they left at the mercy of our state and federal institutions? Who is there to love and support them through the months and years of rehabilitation that lie ahead, physically, emotionally and financially? These are heavy issues and no one person or institution has found a “one size fits all” solution and realistically probably never will. I find myself humbled by the options and opportunities I have been granted since my brain injury, and can only hope that others receive the same consideration.
(Article #2)
Drop Foot
Probably one of the most obvious and frustrating after-effects that I struggle with as a result of my brain bleed is my “drop-foot”.
This may not be a term familiar to many, unless you happen to be in the medical field but besides the memory and fatigue it’s the issue I struggle with the most. I also struggle with the newly discovered knowledge that this possibly could have been prevented.
What is a drop foot? For me it’s my right leg and foot that were essentially paralyzed and immobile for an extended period of time following the brain hemorrhage. Much like a stroke, different body parts were affected by the bleed, depending on where in the brain the hemorrhage took place. In my case my entire right side was impacted and will probably never be the same. But did this have to happen? With so much going on in terms of saving my life, one can understand where attention to a foot may have gone un-noticed and overlooked. Immediately following the bleed, three doctors were consulted and all three basically told my family that my chances of survival were less than 6%. All three declined to operate given the severity of the bleed, with the exception of one neurosurgeon who knew my mom from her days as a cardiac nurse. He is the reason I’m here today.
While I’m glad they focused on saving my life first, every now and then the “what ifs” hit me and I indulge myself some time in regret land! The information I’ve recently encountered suggests that had the foot been put in a sling or boot earlier, this condition might have been preventable. I guess I’ll never know.
How very frustrating to think how much easier my life would be were it not for this hurdle. It has caused me countless embarrassing and humiliating moments of tripping/falling/stumbling and episodes of pure frustration at not being able to be as active as I used to be and continue to want to be. I’ll say it again…I truly am grateful to be alive, but I’m also human and have many pity parties and moments of regret and frustration over “the foot”. Following the bleed, I spent 6 weeks in our local hospitals rehabilitation unit. It was here I slowly and painfully began the process of regaining control over the parts of me lost and injured from the bleed, including work on my foot.
Rehabilitation is hard work. They start you off first thing in the morning, (no sleeping in here) right after the breakfast trays have been collected, and much like an ordinary work schedule, keep you going from one therapy to the next until almost dinner-time. Let me tell you, recovery is an exhausting business!
Initially I was wheelchair bound, and progressed to using a combination A.F.O. brace for the foot, together with a walker, then cane. Gradually as I regained strength and coordination with the foot, I was able to lose the brace and cane, except for situations involving uneven terrain, and other hard to navigate obstacles. I still use an A.F.O. brace for things like mowing the lawn and moving heavy objects, and there are a fair number of things I’m simply unable to do unencumbered, like run and jump and dance. For the most part, I’m able to navigate most terrains, as long as I’m relaxed, unstressed, and the paths are negotiable (twice a year!)
Occasionally I will be “triggered” emotionally which results in spasms of my foot and leg, rendering me unable to walk. Strange to think that our minds have so much control over how our bodies react physically, but to me this is very significant in pointing out the mind/body connection. I dream of someday being able to regain full use of this foot/leg thing, be it by new discoveries in the neurological field, advances in podiatry, or some random, earth shaking new tool which magically lasers out damaged brain tissue (or would it be leg tissue?) The reality is I’ll probably never find out in my lifetime, but that’s okay. I’ve already crushed the 6% prediction bet on my life.
(Article #1)
Hi. My name is Cory and I am an ABI survivor. For those of you who aren’t familiar with this term, it means Acquired Brain Injury. Another term commonly used is Traumatic Brain Injury, or TBI’s, both of which have different causes and origins, but their effects may be similar. I’m not a medical expert, but the way I remember them is that Traumatic Brain Injuries are generally due to accidents, falls, or any kind of head trauma which is received externally and where the brain is injured. Acquired Brain Injuries include TBIs as well as other conditions that develop over a lifetime, as in aneurysms or strokes. The point being, brain injuries have many causes and just as many outcomes.
In my case I was born with a cluster of blood vessels in my brain that were abnormally formed, causing them to weaken over time. Typically people aren’t aware of these abnormalities until they cause symptoms or bleed, as was the case with me. At the time of this life-altering event I was a twenty-seven year old married mother of two young daughters, ages 5 & 2. The day had started out fairly normally with my then-husband hitching up his riverboat for a day of fishing on the river, while I played with my children and sanded down an old chair from the flea market. It came on fierce and suddenly, the worst pain and headache I had ever experienced, and I instantly knew something was very wrong. In addition to the headache I remember screaming to my husband that I could no longer feel the right side of my body, and that I needed help. That was the last thing I remember.
Ten days later I awoke from a coma having undergone not one, but two craniotomies, as the doctors had inadvertently left a sponge in my brain after the initial surgery. Lucky me! I have intermittent memories from this period of time…the old woman in the room with me screaming to come and help her…the freezing cold room and only a thin sheet to cover me…wondering where I was and when someone would come and find me. I had no idea what had happened or where I was and all I could establish was that I was lost and in a strange place and I had no control over my body.
The ensuing months and years would test my resolve as never before. Like an old computer that crashed I literally had to relearn everything and no one could predict how much of myself would return. My days were filled with painful and exhausting rounds of physical, cognitive, and occupational therapies designed to retrain my body and mind back to a place that hopefully resembled the person I was before this typhoon hit my life. I had no feeling or function over the right side of my body and could not remember even my families’ names and faces. I recognized people but could not tell you who they were, with the exception of my children, husband and parents. They say time heals all wounds and this was accurate to a degree but the brain is a funny organ, with which no one person can accurately measure or predict its capacity to heal. Every situation is unique.
It is now 2011, twenty-two years later, and I find myself still trying to recoup my life and work with what I have. I’ve accepted that I will never be the same person I was before “the bleed”, but that’s okay as there must be something else I am destined to do. Today I am a forty-nine years young divorced mother of my 28 and 25 years young daughters. I obtained my Bachelors of Education degree from the local university, and am working with two separate agencies in training. One of these agencies is the source of this column. I look forward to sharing my experiences and thoughts and hopefully hearing from others and their walk along the “recovery path”. Please join me in the journey.
