14 March 2011

An Ode

The other night whilst out with friends our thread of conversation turned to the topic of role models, heroes, and people who generally inspired us. I listened as those around me described famous activists, martyrs, sports personalities and, in one notable instance, Lady Gaga as individuals who had made some sort of impact upon their personal life philosophy and development. It was interesting to hear how names that generally had no significant meaning to me, took on a new importance in the minds of others. As I listened, I wondered whom would I name as my hero. Who inspired me? I had never been one to identify overmuch with people I did not know personally and, although I had the pleasure of engaging with many quality individuals over the years, I was at a loss to name one who stood out over the others as a source of inspiration. But when the time came for me to name my hero, my internal struggle ceased and the answer came so suddenly that I wondered at my stupidity at not having seen it earlier. “My hero,” I announced, “is my mother.” 

My relationship with my mother goes far beyond the normal bonds of mother and daughter. While I am indebted to her for carrying me for eight-odd months (I was a preemie), and for suffering through the pain of a childbirth lasting 18 hours, these factors alone are not what makes her a source of inspiration to me. I am not ashamed to say that she is my best friend. Yes, we have our fair share of disagreements, most notably when it is time for me to leave the country. We hurt each other with our callous words and careless actions. But none of this has served to lessen my love or respect for her.
The attacks began as infrequent periods of numbness of the face. Around the time that I turned 14, my mother started to complain of tightness in her jaw or cheek, occasionally a sensation of burning. As time went on, this progressed to attacks of pain that she described as akin to ‘being stabbed with dozens of knives’ and the mere brush of a finger upon her face was enough to trigger an episode. Apart from me, no one believed her, not even the doctors we paid to examine her. They told her that it was all in her head, that she was probably clenching her jaw at night, or that it was a dental ailment. I watched her mounting frustration as she was referred from one doctor to the next, submitted to countless tests and examinations, and ultimately received no definitive diagnosis. I emphasized with her as her own extended family refused to believe that the pain was severe as she described and accused her of over-exaggerating. 

By the end, the pain had gotten so bad that it was unsafe for her to drive, for an attack rendered all concentration impossible. She was forced to stop working as changes in temperature triggered attacks. Chewing became all but impossible and her diet dwindled to cans of SlimFast and boxed mashed potatoes. Her (and my own) hatred of boxed mashed potatoes dates from this period and we still have ten boxes in the basement. Throughout this entire time, however, she kept her spirits up, joking to my brother and me about how she could be a spokesman for SlimFast every time she popped open a can of the disgusting concoction. But behind the jokes, I could see her distress and frustration. Almost 2 years had passed since the attacks first began and still no one had pinpointed a cause. 

After a time, I accompanied her to all neurologist visits, acting as her voice when the attacks forced her jaw to lock up and tears to her eyes. When doctors doubted the severity of the attacks, I would spring to her defense. Of course, being 15, my words were more often than not ignored, but I knew that one day, someone would finally listen. When a diagnosis finally did come, it was devastating: trigeminal neuralgia, a neuropathic condition that affects the trigeminal nerves of the face and results in repeated attacks of intense pain. It more than earns its nickname of the ‘Suicide Disease’ and is considered to be one of the most painful conditions known to humankind. It occurs in 1 in 15,000 people in varying degrees of severity, but is generally misdiagnosed by medical professionals because sufferers show no physical symptoms during attacks. 

At that time, there were only two treatment options available: anticonvulsants and other pain medications, or surgery. Naturally, our family decided to try the pharmaceutical route first. Mum went home from the neurologists with a massive bag of pills, medical skin patches, and, most ominously, morphine sticks to ease the pain. We could have run a pharmaceutical black market operation from our house. We had high hopes that these would help for, in most cases, it does. Unfortunately, it was not to be. The medication, instead of dulling the pain, merely made my mother dull and drowsy, causing unpleasant side-effects such as nausea and depression. It became evident that microvascular decompression surgery was the only option. In this procedure, a hole is drilled in the skull and the surgeon examines the nerve for blood vessels decompressing its surface. 

Shortly before my 16th birthday, my mother underwent surgery. My Dad went to the hospital with her and I remained at home with my brother, who was in seventh grade. None of us knew if that would be the last time we saw our mother alive, and I will never forget the anxiety that permeated our household during that day. My brother and I barely spoke a word to each other the entire day, and each ring of the phone was greeted with a mix of anticipation and dread. Late that evening, we received word from my father that the surgery was over and that Mum had made it through. However, the situation had been worse than the neurologist had anticipated. Instead of the blood vessel that they suspected was compressing the trigeminal nerve, they found an entire vein. It was so deeply pressed into the nerve that it had almost severed it, and surgeons had been forced to carry out their operation into the very brain itself. But she had made it through the operation. 

When my mother awoke, she was nauseous, had ‘one hell of a headache’ (to put it mildly), and was extremely sore from the operation itself…but had no face pain. Her operation had been a success and she has not suffered an attack since, although she does retain sensitivity to temperature and pressure in her face. The worst was over. Or so we thought. 

I remember the day it happened, although none of us knew how bad it really was at the time. Mum casually mentioned at the breakfast table that the strangest thing had occurred during the night: she had apparently suffered from such a nightmare and subsequent clenching of the jaw that she had severely bitten her tongue. It was an odd statement, but none of us, Mum included, gave it much thought. Just a nightmare, nothing to worry about. As the months progressed, she began to notice new symptoms arising. Her memory began to become fuzzy, words and information harder to process and remember. It was in 2007 that we learned that the seemingly innocent nightmare had actually been a ischemic stroke. (This fact was revealed by an X-ray technician during an examination for an unrelated symptom who casually remarked ‘oh, when did you have your stroke? You can see the damage on the x-ray’.) This was the first of several that she has suffered since then. The changes are noticeable to those who know my mother. She suffers from severe depression, tremors of the hands, mild changes in personality, loss of memory, difficulty in remembering words. Changes in the weather or air pressure debilitate her with severe headaches. 

Despite this, or perhaps because of it, my mother is my hero. From the time I was small, I have watched as she has met every challenged that she has been presented with. She has shown me that it is possible to overcome all obstacles, even if this means a re-evaluation of one’s capabilities and expectations. She has maintained her sense of humor about her ordeal. (Although, I believe that the ‘I’ve had brain surgery. What do you want from me?’ excuse is now out-dated!) Whereas others would have withdrawn from the world in their self-misery, she makes a conscious effort to continue about her daily business. Admittedly, this is not always easy, and some days are much harder than others. But her success rate is not so important to me as the effort that she puts forth. I doubt that, given the same circumstances, I could be as strong as her. She continues to offer support for others, caring for her own mother (my Granny Becky) for weeks on end after hospitalizations, whilst still caring for my father, brother, and me. My mother puts up with my moodiness, stupid comments, inane ideas, Charles Sheen jokes, conspiracy theories, general paranoia, and absence from the family for months at a time. She is stronger in spirit than I can ever hope to be. 

And so this is a tribute to my hero: my mother. I suppose it would have been more appropriate to save this post for Mothering Sunday (April 2nd) or Mother’s Day (May 8th), but I felt that with life being as uncertain as it is, there really is no time like the present to share one’s appreciation. Earlier this year I was struck by a motor vehicle whilst walking down the street. I made light of the event to friends and on my blog, mostly to ease fears, but it demonstrated to me, once again, that I am not invincible. Everything can change in a matter of seconds, and we have no control over it. While I do not foresee myself going at any point in the near future (at least I hope not), I do appreciate the need to seize opportunities when they arise. And so it is in this spirit that I wanted to express the above sentiments, for fear that if I delay, I will never have the opportunity to say them. 

I love you Mum!

1 comment:

  1. Thank you for the beautiful tribute. I love you with all my heart.

    Missing you,