Monday, October 24, 2011

The Uninvited Guest

There’s been a lapse in posts. Now has not been a good time at home. When this happens, we attempt to focus our energies where they are needed. Sometimes the writing has to wait.

The trouble began while traveling in India in 2001-02. There was something wrong with Saum, my wife. During the holidays she wasn’t well. We both assumed she was sick, there are a number of strange foreign illnesses you can easily pick up there.

It cleared up in time for our magical journey to Gwalior and Jhansi. The magic being, for the first time in India, Saum and I traveled solo. We lavished in Indian luxury; spent time alone, reconnecting as only time away from everything on a vacation can bring.

I left for home, she stayed. Before either of us could prepare the real trouble started.

While I was back in the US trying to catch up at work, I got a call. Saum was not well. I had known she was not well – but this was different. Saum was hospitalized – in India. To be hospitalized in India meant this was serious, something of a last resort. They wanted to operate right away. I weighed my flight options while they weighed hers and she was suddenly on her way home.

The surgery was immediately after her arrival back in Minnesota. She was in the hospital, in surgery and recovering before she even realized she was back. But this wasn’t really the trouble I want to write about – this is the precursor, the prelude, the introduction to the last 10 years of our lives. This is where the trouble really begins.

The Guest Arrives

Before I begin I’m going tell you a few things about my wife. I value tenacity and spirit, I like to think I have a lot of them – she beats me hands down. She has clarity, vision, depth, honesty and a whole lot of love. After 16 years of marriage I am more in love with her than at any point before. I would do almost anything for her – it’s easier to consider what I wouldn’t do.

My wife struggles with a reproductive disease: endometriosis, we call it endo. (She also has it’s more advanced cousin adenomyosis.) This trouble started right after the emergency trip home from India. Well not right after it, there were a few months off. Let the surgeries begin. (She’s been fighting it off and on her entire life.)

The chronic reoccurring endo in our lives came like a guest that’s out of job, lost their apartment and has no place else to go. That guest that asks to stay for a few weeks and it’s six months later and you’ve exhausted all polite ways to say it’s time to go. We’ve tried to evict it, but it refuses to leave. It hunkers down, digs in. It screams and causes pain, mostly to Saum, but my heart breaks every time I see it. I can sense her pain like a parent of a child with asthma. I know the subtle signs.

Surgery is tough: they cut you open. It’s not like some broken bone or need for stitches, they cut through you abdominal muscles. People call this your core. You use these muscles for things like standing up and walking. It’s a lot like being stabbed, repeatedly. You’re starting to get the picture.

One surgery led to another. Their frequency increasing to a point where surgery didn’t even wait for recovery. We were both getting exhausted – and fighting. Then the doctor dropped the bomb (one of many). He wanted an organ. How dare he! She has made this offering several times. 

The disease was showing no signs of giving up; it was barely slowing down. I was losing her.

Learning to Live With It

After seven years in 2004 I quit my business and we moved to the county. We bought a pair of horses and tried to make a relaxing place to improve our quality of life.

There’s only so long you can maintain an awareness and attention to pain when you’re the caregiver for a chronic disease. With long prolonged periods, her pain numbs me. For her, it never lets up. It is never-ending and unforgiving. Pain makes you irrational, sometimes you want to hide, sometimes lash out to get those around you to help.

Her health didn’t really improve. I felt angry, powerless against the disease. I was upset with her for changing my life, my constant caregiving. I was tired, stressed and drained. Both of us were having coping issues. This brought us to marriage counseling, where we realized how much each of us was in love with the other. We learned many new skills to use in our relationship.

I took a series of anger management courses that made me a much better man. Much of my anger had been directed at Saum. It took me a while to learn it wasn’t her, but the disease. The disease is not her. I learned when to process it, when to let it go and what I needed to do to be healthy myself. It’s difficult for me to admit and cope with. It’s taken years to write about it.

For our 10th anniversary in 2005 we vacationed in the Bahamas. Even with the disease we had an amazing trip. Neither it nor Katrina could ruin our moods. The trip, the hurricane all led to a shift in our lives that we hadn’t fully understood yet.

In 2007, depression hit us hard. The disease was killing our spirits; we were in a funk. Thanks to an IBM conference trying to help post-Katrina, we discovered New Orleans. This engulfed us into the would of Vodou. Directly following the trip, Saum got into Harvard (the University, in Cambridge, MA). Chronic pain leads to many emotions: depression, anger, hopelessness. The school gave a new direction, using that tenacity I mentioned she started growing again.

When conventional methods failed us, we found alternative therapies that worked. The surgeries were finally drifting apart. We started getting a hold of the bastard.

I started to see this disease as the other in our relationship. There’s myself, my wife and the endo. Endo hurts us both – this is important because I now could see my antagonist. Endo was hurting her, it wasn’t her. She was a victim. Armed with this, I tried to contemplate my new wisdom.

Spiritual Strengths

My wife became a Mambo, myself an Oungan, priestess and priest of Vodou. If you follow my blog, you’ve seen a slow transformative process over the last few years. I spent a lot of time self-analyzing myself, I’ve had revelations.

One of my revelations led to my energy work. I can actually see this disease, I can feel it. I can help. The same techniques and methods I’ve witnessed, after so many years of trying different things (and we tried many), I started learning how to do healing myself. We’ve been working on it together. (It takes two.)

As we’re coming up on the 10th anniversary of all of this (a different 10th anniversary), we’re planning another trip to India. We haven’t been back since this all began in 2001-02. We need this trip, Saumya more than I. We’re planning spiritual pilgrimages, some together, some separate.

We’re also in the middle of a healing practice at home. During the midst of this, her endo decided to fight back and flare up. It’s still resisting leaving our lives. So we find ourselves once again, scheduling another surgery.

This one will claim one last organ. Our surgeon hopes this will be the last. We all do, but it’s not easy to agree to part with a part of yourself, an organ, or even your pain. You need to surrender on a deep personal level. None of this is easy.

One Hell of Woman

Saum has shown me levels of endurance I hope never to explore. She is in school earning a 4.0. She started a non-profit to help rebuild and forge new connections between different faith leaders up and down the Mississippi. She has been writing for the Washington Post, the Huffington Post, State of Formation, the Good Men Project and other sites. She’s doing it all simultaneously, while still in school, still struggling with this disease.

I admire her.

Behind every good woman, there’s a … man. (Not sure if I always qualify as good.)

It’s not easy caring for someone, for a farm, holding down a full-time job. It’s not easy staying steady, calm and let healing flow. It’s not easy separating the disease from the woman when its got its claws in her.

But it’s not her.

I am getting better at this. I am seeing things more clearly. We’ve paid our dues to get us here.

Eviction Notice

I don’t believe in evicting spirits from your home, as long as they’re not hurting anyone.

It is time to evict this endo.

This guest has stayed long enough. In many ways this 10 years is the completion of a cycle. It’s been 10 years of surgery, 10 years since we’ve been in India. It’s time to put this cycle to an end.

No one should have to endure this, but for the first time in a long time, I feel like I can see the end of it. The trip to India, the pilgrimage, this surgery: I know they are necessary.

For the first time in a long time, I feel like we can beat this.

We’ve learned so much, grown so close. This disease has made us a team in ways we have never been before. Some good has come of this.

As for the endo, it’s time to go dude. You’re no longer welcome here. We rescind our invitation. Now get the hell out.

Further reading:

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  1. What a journey, and how wonderful it is to be allowed in via your sharing. Thank you Urban.

  2. Urban, I know this is something you've been waiting to write a long time. I hope this is indeed the last surgery, and I will be available for both of you no matter what happens.

  3. Both of you blow me away. Tears here too.

  4. Oh, and by the by, it's Jen Lee. ^^