It’s time for some thoughtful writing that tells a little more about myself. Here goes… To begin with, this blog was meant to be writings and musings of my world and how I trudge through the garden of life hoping to share something of myself with others. I didn’t expect it to turn into such a sewing and quilting theme, but sewing gives me such satisfaction in my life right now. So, just who is the woman in the mirror?Ā 
Growing up, I had some difficulty coping with life especially in my teens. On the outside, I looked normal; on the inside-it was much different. Most people never knew there was anything wrong, and there wasn’t until I was diagnosed (sounds so awful, doesn’t it). I prided myself on being able to care for myself and was able to do almost anything I set my mind to-with restrictions and limitations. I even helped to re-shingle a house and do other not-so-feminine activities like splitting wood, carpentry, and such. I was able to go to college and graduate with double degrees almost like checks on a bucket list, but these were things many never imagined I would do or even excel at. I didn’t talk about my health issues and hid my seizures for fear of being rejected ā a seizure would consist of numbing sensation on one side of my body. As time passed, the seizures were controlled so no one really knew there was anything different from my inside world.
It has not been all easy and carefree-there is much missing in this story. In the past 10 years or so, as I began to have real problems-awful headaches, lack of short term memory, falling due to dizziness and permanent loss of feeling and some paralysis, I lost friends and family relationships were tested. A lady who I considered to be my best friend believed I was inventing symptomsĀ believing that there was nothing wrong with me because these changes came suddenly-IĀ was able to doĀ about anythingĀ (with some limitations) before. She cut off all ties and said someĀ nasty things-that hurt. Another lady told me that I did not have enough faith because surely God would heal me if I just had more faith (that’s what she said)-that really hurt. Then there was the family member who said I did not need to see doctors because there was nothing wrong with me. That was hard because she was my grandmother. Others believed I would ‘get well soon’ as if I was recovering from a cold. All of these things have happened in the last 10 years, and each has left its mark, so I guard my feelings and don’t speak much about issues I face. I don’t want to be hurt any more. I know others who have more problems than me so I cannot complain because it could have been and can be so much worse.
So what seems to be my problem? Well, I was born with an arteriovenous malformation or AVM for short in the cerebral part of my brain. Yeah, not a lot of people have one.Ā Mine is rather large and deeply embedded. It is definitely not the largest AVM but it’s sure not the smallest. It mainly affects one side of my body, but it alsoĀ affects mobility, speech, and cognitive applications just to name a few. Most people do not even know they have one of these things until it starts to give them problems or worse ā when it bleeds. I was diagnosed with this thing before our modern technology of today (sounds prehistoric). Its location and size are why I still live with it. I was diagnosed the old fashioned way-before CT scanners and MRI machines. Yes, people held me down so they could insert that nasty needle into my neck artery in order to pump ‘dye’Ā into my brain (cerebral angiography). I remember it like it was yesterday but in fact it was 40 years ago this year. It was very traumatic for someone who did not know what was going on because I was not told what to expect. Back then, patients were not told very muchĀ but as a child-a preteen-I was told even less (nothing).
As I have aged, I have explored treatment and surgery options. For me, there isĀ little hope for quality of life after “treatment.” I have known very few people with brain AVMs, fewer have one located in the same area and relatively same size, and I have never physically met someone who has one. There is no cookie cutter method of how to deal with these things. Many times doctors tell patients that they must have surgery only for the patient to discover they will never see any type of normalcy again. Many of the AVMs are aggressively treated and then patients wait for about 1-2 years only to have more surgery because other problems develop in the brain. Some do fine with treatment depending on the case, but I had a lady tell me that she wished so much that her husband had opted not to have surgery because he died the second time around. Others continue through years of treatment hoping to one day gain something normal in their lives again. I could write a book on my experiences and stories from others, but I know I am lucky to be aliveĀ –Ā it is actually more than luck.
So, who is the woman in the mirror? Is she who she aspired to be so many years ago, or does she only see a shell of what is left? Each day I live, I struggle to fill that void-that shell, and as Paul Harvey used to say, “Now you know the rest of the story” though this is only a partial glimpse into my life, a part that I do not easily share.
Happy Gardening to all and may the person you see in the mirror be the person you have aspired to become and if not, may you continue to fill in the gaps until you are.
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Garden2day 