Tuesday, August 14, 2012

Discovering What I'm Made Of

[Editor's note: Apologies for the length of this entry. This topic has been percolating for a while, and I only recently felt ready to write about it.]

I had a random, last-minute idea to attend church this past weekend. When the pastor began his sermon, he said he wanted to talk about grief and how people generally talk about grief as if it were an event with a start and stop date, when actually it can be a lifelong process that evolves as you evolve.

He also spoke of ways to cope with grief. Among his suggestions, he said to listen to your dreams. Snippets of my dream from the previous night suddenly flashed through my mind like a film in fast-forward. I got goosebumps. I felt heat in my ears.

He talked of Carl Jung's theory that dreaming was the body's natural mechanism for healing. And he referred to John Sanford's book "Dreams: God's Forgotten Language," which talks about the psychological and spiritual significance of dreams. Sanford points to the many cultures across the globe that believe God speaks to humanity in dreams.  

In my mind's eye I see my dream again. I am on the floor, face down in a lunge. I am leaning into the stretch when suddenly the floor turns to sand and a terrific and terrible wave comes crashing down on me. I feel the full weight and power of the ocean on my back; it is almost suffocating. I dig my fingers into the sand, trying to maintain my position, but the force is too great. The water rips me off the floor and hurls me through its murky blackness until I eventually land flat on my back. I open my eyes only to see that I am yards — perhaps miles — deep into the ocean. The light at the water's surface is so far above me, so unreachable, that it feels like tomorrow proceeding without me.

I realize this is death. I will not breathe again.

The pastor talks about the death of his wife, how he had studied the psychology of grief for years in academia, but none of it prepared him for what he felt when he lost his wife.

I feel the vast emptiness of the dark ocean around me. It is absolutely frightening and foreign, but I am doing my best to relax into it, trying to trick myself, keep my fear at bay. But then I feel another wave coming from miles away, like a tsunami on a radar screen. My heart is pounding sickeningly in my chest. I know how terrible it is going to be and I know I have no control over it. Instead of digging my fingers into the ocean floor, I go limp and the rush of the water sweeps me up like a ragged doll into a blurry, swirling blindness. I am not without fear, but this time I am one with the turbulence. Then another realization: I am being projected upward. And just like that, my face pops through the water's surface. I am floating on my back in the water. I am breathing again. 

I try to take in the expanse of blue sky above me. It is as grand as the ocean beneath me. But I can only see part of it from where I float. And that is when I suddenly find myself in the sky, looking down on my body.

Now I can see so much more than what my earthly body could see. This perspective is also foreign, but — unlike the turbulent ocean — it doesn't frighten me.

I don't feel any attachment to that body I see way down there in the water. I know I am dead. But from this viewpoint, it feels more like ... a renewal? A beginning? 

The pastor finishes his sermon and asks us to bow our heads in prayer. As everyone lowers their heads, I quietly gather my purse and head to the chapel doors. 

I walk outside into the bright sunshine. I get in my car. I drive in silence. No radio. Phone off. I drive and then I cry. Because I understand my dream now, and the divine significance of the vision, the comfort I find in it, breaks my human heart.

You see, back in January when I had a retinal hemorrhage, the eye doctor suggested that I get a physical exam because such hemorrhages aren't typical and it could be symptomatic of something larger going on with me. So I did, and my GP uncovered something new: I tested positive for anti-nuclear antibodies (ANA), and these antibodies show a homogeneous, speckled pattern. What does that mean? It means that I carry the same genetic coding as my mother. Coding that says I am genetically predisposed for autoimmune disorders — specifically lupus, Sjogren syndrome, scleroderma, polymyositis, rheumatoid arthritis and mixed connective tissue disease.

My mom was diagnosed with scleroderma at age 44. She died the day before her 45th birthday.

For a week I sat on this news about my genetic makeup without telling anyone — save for a friend who happened to call me only hours after I had read my blood test results via an email from the doctor's office. I was a bit of a mess and had no business answering the phone, but I did. I was sitting on my bed, mostly numb, hot with tears and acutely aware of everything, like I was watching myself in a movie.

I told my friend that I needed to see a specialist to fully understand what the results meant. It was wasted energy to panic and I needed to stay calm. I needed more information. He agreed. He told me to keep him posted. I could call him anytime.

Thanks to some personal connections, I was able to get in the following week with a highly regarded rheumatologist who stays booked months in advance. He examined me, interviewed me extensively, asked about other symptoms I might have and reviewed my blood work. Then he told me:

  • I have Raynaud's disease, which is typical among those who have an autoimmune disorder, but Raynaud's can exist by itself too. Having Raynaud's does not equate to having an autoimmune disorder.
  • I have a significant vitamin D deficiency, which is typical among those with autoimmune disorders because your body can't process it, but this deficiency is extremely common among the general population too because we now wear sunscreen and are mindful of sun exposure.
  • Aside from being ANA positive, nothing in my blood work indicates an active autoimmune disorder. My numbers are in healthy ranges across the board.
The doctor said all of this in a cheerful tone, as if it were good news, but all I could think was: So, you're saying I'm OK now. But what about later?

As if he were reading my mind, the doctor squared his shoulders to mine, looked me right in the eyes and said: "Katie, I am looking at a very healthy 41-year-old woman who shows no signs of an active autoimmune disorder. And as far as scleroderma is concerned ... we know the least about it, but we do know that it's very rare to see two cases back-to-back within a family. If you were to develop scleroderma like your mother did, you would be an exception to the rule. I'm not saying it isn't a possibility, but it would be a departure from what is typical and expected of the gene's behavior."

What about the other autoimmune disorders? The doctor said that I'm "genetically predisposed" (read: at increased risk), but being ANA positive by itself doesn't mean I'll inevitably get sick. Autoimmune disorders are highly linked to environmental triggers. There must be a "perfect storm" of triggers to elicit an autoimmune response in my body. What are those triggers?

  • Regular exposure to toxins (household cleaners, yard chemicals, highly processed foods, highly polluted air);
  • Physical trauma (a serious accident, invasive surgery that's hard on the body, a serious viral/bacterial infection); and
  • Regular exposure to emotional stress (no work/life balance, mental health issues, toxic relationships or lifestyle choices that cause long-term distress). 
The doctor went on to point out that I am already living ideally, given my genetic makeup: I work for myself and place value on work-life balance; I am passionate about physical fitness and being good to my body; I make good decisions about my nutrition and indulge in moderation; I have strong familial and personal relationships that keep me emotionally sane; and I have volunteer work that is emotionally gratifying.

"I couldn't prescribe a better lifestyle if you were a regular patient of mine," he said.

To further comfort me, we went over a list of symptoms that would indicate something could be going awry inside me.

"If you notice any of these things going on, come back and we'll talk," he said. "As far as I'm concerned, you can view yourself as a carrier of this gene. It meant one thing in your mother's body and I'm so sorry that happened to her. But it doesn't have to mean the same thing in yours. What your exam today tells me is that you're a healthy woman — healthier than many her age."

I walked out of that appointment with a strange mix of feelings. I could no longer hear the ticking of an impending death sentence, but I felt a new fragility inside me — a fragility that continues to color everything I think, see, feel or do.

This fragility, though, isn't a bad thing. I think it's a precious gift. It reminds me that I need to take care of myself — always. That I need to be gentle with my heart, patient with my mind, good to my body. It also furthers my conviction that the only thing I can control is what I do with my time today. I can still plan. I can dream. I can prepare. I can hope — all of which are ways to take care of my future self. But I'm learning not to bank on things unfolding a certain way, just because that's what I expected or worked toward. The only sure thing I have is the present moment.

Day by day, this is my journey to live out, and I feel incredibly empowered — genetically wired — to not waste it. I want to live it with arms wide open until that wave comes for me. And when it does, it'll be OK. Because I feel in my heart now that death is just as much a beginning as it is an end.


1 comment:

  1. Words escaped me right now. Save, you amaze me Katie. Imagining you like a ship tacking toward her North Star, I predict the legacy you are leaving in your wake will affect many others over the course of time. Thank you for "doing" what you do best. Aho, ashe, amen dear one.