A fascinating and frustrating journey into my brain. (As printed in the Bridge River Lillooet News on Wednesday, May 27, 2015).
When I reflect upon writing to tell an audience about my health, I think of the song by R.E.M. titled, Everybody Hurts. I suppose I see the song as a preface to this article; my suffering is no greater than and, in several ways, is much less than the experiences of many.
In September of 2013, I had an intracerebral hemorrhage in the left thalamus region of my brain. The bleed measured 3cm by 4cm and precipitated a stroke. The bleed itself was caused by a cluster of malformed blood vessels in my brain, called a cavernous angioma. The abnormality consists of weak vessel walls allowing for blood to leak through and into the brain. The MRI also indicated two smaller, older bleeds had occurred, which explained my symptoms over the two years prior to 2013. For two months in Vancouver General and Royal Inland hospitals, I worked with professionals including nurses, neurologists, neurosurgeons, occupational, speech and language, and physio therapists, and a rehabilitation doctor. I still work with some of these individuals and, in Lillooet, I continue to receive exceptional care. Of course, to say family and friends have been supportive would be an understatement.
The journey into the brain has been a fascinating and equally frustrating one. With my husband and the neurosurgeon, we opted not to do surgery as the outcome may have extended my life, but would have greatly reduced my quality of life. This is because my CVM (cavernous malformation) is located in a deep (termed “eloquent”) area of the brain. Research indicates that between 35-50% of people with an intracerebral hemorrhage expire within a month of the event. I rarely need to remind myself that I am very fortunate.
But, there are those odd times where I am irked by the deficits caused by traumatic brain injury (TBI, also known as ABI, or Acquired Brain Injury) which are transient, progressive, recurrent, and fixed. Since the thalamus regulates many functions such as one’s sleep and awake cycle and body temperature, I have insomnia and sometimes have the most painful chills. I have right side weakness, numbness, neurological pain, and headaches. I have difficulties with memory, processing, noise, lights, multiple conversations, questions, and instructions. The most dominate issue is neurological fatigue; the brain drain can be excruciating and often affects me in my entirety.
In Canada, June is Brain Injury Awareness Month. Whether one has had a sports injury, been in an accident, had a stroke, or seizures many of the challenges can overlap. The healing is not necessarily linear in nature and the more we learn about the brain, the more complicated and dynamic we find it to be. TBI people often look fine on the outside, but find navigating their “new lives” difficult. The following is a list of websites (including my blog) which have useful resources and links:
http://biac-aclc.ca/2011/05/20/june-is-brain-injury-awareness-month-2/ (Brain Injury Association of Canada), http://www.brainstreams.ca/ (British Columbia Brain Injury Association), http://www.kbia.ca/index.html (Kamloops Brain Injury Association), http://www.normandoidge.com/