Tuesday, October 19, 2010

Se(n)t out to Sea in a Pea Green Boat

One of the best moments of my recent life was swimming with my son in the ocean waters off Maui. The joy of returning to the ocean and playing in the waves is a salty sweet memory that still flavors my sadder days.

This memory is layered upon a lifetime of others: hours spent in the exhilarating mountain cold of Fish Lake in SE Oregon where my grandparents had a cabin; dive bombing with my cousins into my other grandparents kidney shaped pool; polar bear swimming at Cleowax lake at girl scout camp; the visceral pleasure of trading the weight of a backpack for the cleansing and refreshment of an Oregon Cascade lake. I was always the first one in and the last one out of any body of water that came my way. Scuba diving, snorkeling, floating, lolling. Being in and around water defines me. Then, the grown up pleasures of Belknap hot springs; star gazing from my folks hot tub and countless hours soaking in bathtubs.
With careless casualness, my Urologist informed me earlier today that this is over. No baths, no hottubs, no Maui wave surfing. Apparently he forgot to tell me that with a superpubic catheter water immersion isn't allowed. Is that a problem for you, he asks. As if gimps don't float.
I haven't stopped crying since then. He broke my heart. How could this be true? How can I survive having something so integral to my entire life coming to an end. 
Shouldn't doctors be required to warn you if choice A causes thing B to end.
I can't write any more about this. Maybe once I have processed a little more this won't seem so bleak. But I doubt it. Maybe there is an upside that eludes me right now. But I doubt it.

Down around Biloxi
Pretty girls are swimmin' in the sea
They all look like sisters in the ocean

Thursday, October 14, 2010

Safe or Sorry: this is my Question

What is the difference between parasailing and paragliding?  In the first, semi-adventurous tourists put on a parachute and are towed behind a speed boat; while paragliding requires a level of moxie that few people have. Enthusiasts hike to the top of cliffs and throw themselves off, depending on a flimsy nylon parachute to slow their accelerated rate of descent. What kind of fool would choose this for recreation? Me, I hope—if I had known then what I live now.

If at, say, 25, I followed Alice down the rabbit hole and was given a glimpse of my life at 45 would I have suddenly gained the internal fortitude to do all types of seemingly crazy things. It is one of those 'road less traveled,' right turn/left turn questions that philosophers have chewed over for ever. I am more interested in imaging the kinds of things that I passed over-thinking I could always get to it later.
These thoughts were triggered by a video I saw of a couple hiking through a South American jungle with the sole purpose to jump off a cliff. The wife is having so much fun, she does a back flip off the edge. The husband gets caught in a wind current and slams into a tree. Even after a severely broken leg from this accident, a year later he is eagerly planning his next jump. Crazy? Absolutely, but, at the same time, so darned alive. If I had my health back I think I would start with bungee jumping, move to paragliding, and 'take the leap' to base jumping (same jump, no chute). Not because I had my full functioning body back, but because being safe and sensible doesn't guarantee that you will be safe or that life will be sensible.
Would I rather: be a quad from hitting my head on the ocean floor or sit safely in the boat; eat the volcanic Thai food or stick with the one star; take the payment optional roving reporter job or settle in to editors desk. I often say that except for MS, John and I would be backpacking now. In reality, we had plenty of health years where we were too busy, too parents, too career to take a weekend day-hike trip, let alone a summer to reclaim the Pacific Crest Trail.
This isn't about regret—rather a touchstone to return to the next time I make a seemingly small choice or awesomely large decision. My paragliding, hiking, and volcanic food (and roller derby-too bad) days are behind me, but who knows what is ahead. Maybe the next time I find myself in an island locale, I will sign up for the parasailing.

Sunday, October 10, 2010

Circus Acts aren't for the Faint of Heart

These past few days were rough and I don't see any let up. My new catheter is acting up-not draining as well as adding to rather severe pain in my abdomen and left back. I spent most of Friday at the urologist's office trying to find the cause. At the end of the day I was left with a generic diagnosis of MS bladder spasms pinching my catheter that causes urine to push into the tube between my bladder and kidney making it be irritated. No solutions. No treatments. Simply one more thing I have to live with.
And, I am not certain that I can take one more thing. The past three months have been layer upon layer of one more thing. Somehow, I have to live with this.
I am trying to hold on to what I can. My hubbie stays committed to this battle (I both salute his commitment and wonder about his sanity). 
This afternoon two friends stopped by with their adorable daughters and reminded me that living is a blessing. I think of my own son at 15 months and later at 6 years. It seems like yesterday. Raising him and these memories are another thing I treasure.
It seems that I am starring in a high-wire act crossing the Grand Canyon. On one side is the pull of pain and loss and sadness. On the other the bouyant support of friends, family, and the life I treasure. Somehow, I must make my way across this seemingly impossible high-wire feat.
So, thank you to the friends who stopped by today. You may not realize it but a few hours of your time gives me strength to carry on. Thank you. Thank you. Thank you.

Monday, October 4, 2010

A Week of Extremes

In the same week, my much-loved pastor asked my permission to talk about the joy in my life in his next sermon and my long-term wise counselor asked me about the current state of my chronic depression.  How then, do both joy and depression share space in body and soul?
I wish I could say that I have made friends with the depression. Rather it trails opaquely behind me like the slime from a slug. As a little girl running along the woodland trails and spongy beach-way paths of Oregon, slug slime gave a few second warning of banana-sized slugs ahead. And, if this shiny warning wasn't heeded, in a belly roiling moment slug guts would squoosh between bare toes. I can tune out and ignore the depression. Paste on my shiny happy people smile and joke and talk; but it is always there. I do try to take the best care I can. Medication and counseling help, but recent research indicates that MS-caused depression may be resistant to traditional treatment. That is MS code for nothing can be done; learn to live with this symptom.
For the past few years my world has gone from macro to micro. The resulting aloneness is probably one of the most treatment resistant aspects of living with depression. As my work-life and volunteer-life, first faded away, now I see my most intimate friends moving forward with their lives while I stay stubbornly stuck in neutral.  Learning to live at peace with aloneness is currently my biggest challenge. {Want to know more about MS & Depression?}
What then is this joy in the midst of the depression and challenge of advanced MS. Many good and even great things exist in my life. But not one thing adds an iota of true joy. I am talking of spiritual joy that comes from my relationship with Jesus. From the steady heartbeat of eternity that pulls me forward. It is a commonly held, and I believe false, belief that being a Christian should reward me with the payout of a Barbie and Ken life. Where is my Malibu Barbie beach house with Ken at the wheel of my pink convertible. Shouldn't my allegiance to God produce tangible benefit? Instead, my faith serves as salt to melt through the slug slime. My faith is the touchstone that guides me through the darkest days. Without it, I am not sure I would have survived this far.
  As pressure and stress bear down on me,
      I find joy in Your commands. Psalm 119:43