Staring Down a Tunnel

Posted by Amanda on Saturday Jan 16, 2010 | Classified as: Everything Else | Sub-Classified as: family, health, love

Truly, she is the most wonderful woman I’ve ever known. Do you see her smile? Do you see mine (and yes, that’s me with long, blonde highlighted hair)? She does that to me every time I see her. A full-on guffaw, head thrown back and all.

I’m no stranger to death. I’m certainly well acquainted with chronic illness. For the twenty-three years that I’ve been alive, the woman in the picture – my mother – has fought to gain a foothold against her ever-growing list of illnesses: Cushings Syndrome, Nelson’s Syndrome, and Growth Hormone Deficiency are the longest standing.

I spent my childhood wrapped in tales of Middle Earth, trying desperately to escape from our tortured version of reality. It was fiction that brought us together, even when things looked bleakest; when the doctors told us that there was nothing they could do for her, short of experimental medical procedures (and thank the fates for Canada and our medical system).

Lesser people would have given up this fight. Lesser men would have left her to deal with her own problems. But my family – though flawed, just like everyone else’s – has proven that it takes more than illness, desperation, and sadness to tear us apart.

Family is the most important part of life. You fight to keep it together. Without it, life’s pretty much meaningless.

Chris Hoffman, my Dad

Standing at the Tunnel’s Mouth

Just before my wedding in the summer of 2008, her condition began to change. Her health had been relatively stable. But then her eyes began to tear up uncontrollably. She began to find it hard to breathe.

By the time November rolled around, she was diagnosed with a new disease: sarcoidosis. Sarcoid manifested itself in pronounced scar tissue on her legs and the formation of nodules in her lungs, which we thought was due to the plethora of medication she’s taken over the years. So, the doctors put her on corticosteroids, namely prednisone – a particularly nasty steroid that my niece was on to fight off infection during her chemotherapy.

We thought that by the time December 2009 rolled around, her lungs would have made considerable progress toward better health. Her neurologist in Vancouver had told her that if her lungs were under control by 2010, we could put her into Growth Hormone treatment, which had been a dream until now. In spite of our medical system, Growth Hormone is still considerably expensive.

However, much to our surprise, her lungs hadn’t changed at all. In fact, they’d gotten worse.

Adding Another to the List

I got the news last night that the worsening condition was due to a new disease on the block: pulmonary fibrosis, which means that the capillaries in her lungs are twisting and hardening. This can lead to lung failure, heart failure, and eventually death.

Last night, my heart was completely shattered by the news.

Today, it really sank in.

I did my research this morning. And then I broke down into uncontrollable tears. I’ve been faced with the notion of mortality many times before. On some small scale, I’ve even tried to accept it.

I really fail at accepting my parents’ mortality.

No child wants to accept the fact that, one day, her parents will die. In spite of overwhelming odds that she might not make it through the next surgery, she has lived. I’ve taken that as the rule, not the exception.

Every illness, including the new kids on the block, cannot be explained. We don’t know how she managed to get Cushings. We know that Cushings lead to Nelson’s. We’re not sure how Growth Hormone Deficiency played into it. And sarcoid is a mystery. Hell, even the pulmonary fibrosis is a variable to which there is no quantifiable answer.

Amor Vincit Omnia, Even Illness

Love conquers all.

When I was in school, the teachers would ask: “Amanda, who is your hero and why?”

I would say, without a hint of irony, “My mother. Because she doesn’t survive. She fights. She lives. She is my sunshine at the end of a dark tunnel.”

The kids would laugh at me. None of them understood the magnitude of her heroism. In response, I would tilt my chin defiantly and stand by my words. I knew her strength just as intrinsically as I knew my own. Her strength fed mine just as mine fed hers. We ~~were~~ are a team.

Today, when people ask me that question, the answer is still the same. It’s not a celebrity, or a historical figure, or even my beloved Shakespeare. No, it has been and always will be my mother.

Her heroism, as I’ve called it, can be defined as nothing short of superhuman. Others would have stopped living and only managed to survive.

Instead, she smiles. She laughs. She bakes marvelous cookies and sends them to us in Vancouver. She shops. She listens. She hears. She is concerned. She loves.

She isn’t prepared to give up without a fight.

Neither am I.

This entry was written on Saturday, January 16th, 2010 at 1:59 pm and is filed under Everything Else. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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