The Vacation

I am on vacation.

For an entire week, my husband and I are away from home, away from work (well, mostly—if there’s Wi-fi available, we work a little bit), touring the beautiful Olympic Peninsula. As Seattleites, the Olympics are pretty much in our backyard; touring the Peninsula is at once exotic and homey. Quite a way to spend a week.

We did this trip two years ago—during my first year of TPN, before we’d figured out that Phenergan causes me to experience severe amnesia as well as rebound anxiety/panic attacks, and before we knew—for sure—that TPN was not at all temporary. During that time, we were still waiting for the gastric stimulator to start helping, still waiting for that momentous day when I would celebrate a functional GI system by sharing an expensive dinner with as many friends and family as we could possibly gather together. The problem is that when you’re constantly in waiting mode—constantly hoping to magically turn the corner into normalcy—your attitude is bound to suffer. Or at least mine is. Every day of hope turned into one more day of disappointment when I still vomited, still couldn’t tolerate any solid food. Every morning when I hooked up to my TPN (I ran it during the day then, and carried it around in a backpack at work), it was an admission of failure, and every visit with the doctors reinforced that disappointment and letdown. It was not a positive place to be—always hoping against hope, always having to tell the myriad well-wishers that nothing had improved. I got so tired of hearing the rather meaningless and vague remark that my “color is good” that it became a joke between Greg and me. Fever of 104.7°? At least my color is good! Too tired to take a shower? At least my color is good! I know that the people saying it mean well, but it’s become nothing more meaningful than a platitude offered to someone who often feels like she could vomit up her entire gastrointestinal system—and be better off for it.

Anyway, back to the 2005 trip… To say the least, we weren’t in the greatest physical or emotional states. We were both exhausted, tired of putting up a good front so that we could cower in our apartment and cry ourselves to sleep as needed. I was gorked out on IV Phenergan, wiped out by my own far-less-than-compliant TPN schedule, emotionally drained from nine months of unfulfilled hopes, and coming up on a whopper of a bout with line sepsis. So in general, I didn’t have much energy to get out and enjoy the beaches or hike up the short trails to scenic vistas. And, to be honest, I remember so little of it that Greg has to remind me that we’ve been here and seen this before.

So here we are, not quite two years later, and our lives are abundantly different, though from the outside, the circumstances probably look much the same. I’m on TPN, I’ve got even more tubes and ports and implants, and I still spend a lot of time sleeping. But today I had the energy to go walk the beach for awhile (even with a brisk ocean wind), climbing on driftwood, taking pictures of the lodge where we’re staying, generally doing what normal tourists do. Last night we stayed at Manitou Lodge near Rialto Beach; tonight we’re in the Kalaloch Suite at the Kalaloch Lodge, with seven 3’ x 4’ windows offering a 180° view of the ocean. The weather is clear, the sun is shining, and our room is about as large as our entire apartment, only more open, and there’s a HUGE bathtub where you can soak and still look out the windows. We’re living it up—and this time I’ll remember the whole thing!

I must admit, though, that I needed this vacation. In addition to our “normal” jobs—I’m the lead unit secretary at a small specialty hospital, and Greg is the lead for landscape maintenance at a couple of retirement communities, as well as webmaster for a private garden—we’re still managing editors of our own movie review website, Past the Popcorn, with a staff of six writers, as well as consulting editors for another website, Hollywood Jesus. When you add in managing a chronic illness, we generally keep busy. Let me emphasize, though, that Greg and I love our life. As partners in just about everything we do, we are an inseparable, interdependent team that defies the majority of conventions when it comes to couples and families and just being who we are.

As our vacation threatens to come to a close, I know that I have rested well. Four different beds have wreaked havoc on both of our musculoskeletal systems, but we eased seamlessly into vacation mode, and have thoroughly enjoyed ourselves. One night I even ate dinner in the restaurant just downstairs from our room. For the first time in four years, I ordered a dinner (carefully choosing things I could easily liquefy with some concentrated mastication), and ate some of the most delectable and decadent foods I’ve ever eaten in my entire life, let alone post-GP. Then I went back to our room and vented through the g-tube, and returned for dessert! I’m sure that’s not necessarily the intended purpose of the tube—pleasure eating and venting—but I tell you, it meant the world to me that night.

Our next planned vacation is a New England cruise this October, up into Nova Scotia, and back down to New York City with both sets of parents. You can bet I’ll be blogging away on that one (there’s even Wi-fi on the cruise ship!)

 

Retreats Are Not Feats

Last weekend I learned something about myself.

I went on a Christian Women’s Retreat, eager for a weekend of reflection, connection, and spiritual renewal. I was geared up for some serious soul-searching, prepared for God to work on me and prune me. I was ready for the potential pain, and the subsequent hope of growth.

But none of that happened.

Let me back up a bit and explain the circumstances. This was my first retreat since the Great Body Rebellion, and while I was a little daunted by the complications inherent to multiple medical supplies and routines, I was a little enthused by the opportunity to prove how good I am at dealing with my illness. Being a women’s retreat, obviously Greg wouldn’t be there—in fact, he was going to be on a business trip in California for the weekend, so I was, quite literally, on my own. I was rooming with my sister and her housemate and my mom, and my best friend was there as well, so “alone” isn’t an appropriate description. I was just without my healthcare partner, but I was OK with that.

Or so I thought.

The retreat lasted for two nights—long enough to count as a retreat, but not long enough to get a routine established. I like routines. But I can handle a few days’ worth of discombobulation for the sake of my spiritual growth.

But what happened was that between my routines and my (gulp) limitations, I didn’t spend much time with God or anybody besides myself. Friday night the schedule ran late, and I had to leave about ¼ of the way through the main speaker’s opening session so I could set up my TPN. Preparing the TPN took longer than usual because Greg wasn’t there and my supplies were in numerous Ziploc bags instead of their usual well-organized bins at home, and I had to try to keep things sterile in an unfamiliar environment when the nearest bathroom was fifty feet down the hall. But I did it, and by the time my roommates came in I was safely tuck in bed, IV running and lines out of their way.

Then, of course, came the IV pump alarms, which woke up everyone in the room, and possibly even next door, and they never stop until you figure out what’s wrong and get it fixed. And then I had to set an alarm clock to go off an hour before I wanted to get up, so I could begin the downward taper on the TPN (to avoid plummeting blood sugars). Then the actual wake-up alarm (which was earlier than my sister and her housemate wanted to get up) to make sure everyone was fully and equally disturbed.

Saturday I made it to the morning main session, then, since the workshop I had intended to attend had been canceled, I decided to catch up on some rest and take a nap through the workshop time and lunch. Instead, I ended up sleeping for six hours, missing another main session, another workshop, and all the free time I had hoped to spend with my best friend and my mom and sister. And, having slept so long, I missed two (very important) doses of my anti-diarrheal, so my intestines were wide awake and hyperactive. Just for the record, uncontrolled diarrhea is incompatible with sitting still in a large auditorium with a crowd of five hundred or so women. Getting up and down and squeezing in and out of the aisles several times is generally not well tolerated, even by the most patient of Christian women. So I spent the evening alone in our room (between panicked sprints to the public restroom), hoping that by the time the main session let out, my guts would have calmed down so that the 120 women sharing the five toilet stalls wouldn’t present an uncomfortable and potentially embarrassing situation.

So, by Saturday night, I had attended 1¼ of the three main sessions, one of four workshops, and slept through every moment of free time. I had paid $120 for: six meals I wouldn’t even be attending, let alone eating; four main sessions of which I’d already missed half; five workshops in which I’d participated in exactly one (which wasn’t even very good, to be honest); and numerous extracurricular activities like massage, shopping, thrifting, horseback riding, and hiking that I only dreamed (literally) of experiencing. What was I thinking?

Sunday went a little better—I actually attended both the last main session and the last workshop—but I couldn’t help but feel more than a little disappointed. What I’d gotten from the main speaker was good, solid input and insight, but I hadn’t connected with God the way I had planned, hadn’t had any major convictions of sin or ideas to kick-start my spiritual growth as I’d hoped. I’d spent $120 to sleep in a strange place and drag three extra bags of medical supplies around and dash into a public restroom at irregular intervals. Not my best financial investment, I’d say.

But as I reflected on the weekend, I discovered that I had learned something. Maybe not what I wanted to, but I know myself better than I did before I left.

First, I need my husband. Obviously I did OK without him—I came home in one piece, without any missed nutrition or septic events—but he’s my partner. He helps me. He’s my second brain, my third and fourth hands, my encourager, my number one fan—quite literally, my other half. He knows how I feel about my condition(s), knows my insecurities and weaknesses, knows what bothers me and what causes me stress. Not having him around to share the stress load means I am continuously thinking about something else: where’s the nearest restroom? Should I take my meds an hour early and risk sleeping through the session? Or should I go to the session, take my meds an hours late, and risk paying for it with sprints to the restroom of uncertain success for an uncertain amount of time? What if there’s a line at the ladies’ restroom (when isn’t there a line at the ladies’ restroom, especially at an all-women retreat?)? Is there enough ice in the cooler to keep my supplies properly chilled? Did I forget anything?

I spent so much time distracted by those questions (and more) that even during the sessions I was able to attend, my mind was scattered in a thousand different directions. I need him.

The other thing I learned about myself was that I have an ego problem. (Big Surprise.) Every time someone offered to help—whether it was to carry some of my extra medical luggage, help me prepare my TPN, help me locate certain supplies, whatever—I refused. And it’s not because I couldn’t have used the aid. I was just stubborn enough and just proud enough to not want their help. In the process, I alienated the people who would have actually enjoyed helping me, simply because I was out to prove something to myself, if no one else: I am perfectly capable on my own.

There is a long-standing joke in my family about my independence (my most commonly uttered phrase as a toddler, child, preteen, and teenager was “I’LL DO IT MYSELF!”), and Greg, long before we were ever romantically involved, once (aptly) described me as “too damn independent.” I was too independent for my own good—or anyone else’s, for that matter. I’ve since learned to accept help, but obviously I’ve forgotten some of those precious lessons learned. I need help. I can do it alone, but at the cost of a lot of opportunities for personal growth and appropriate relational vulnerability. I was afraid that whole weekend of being weak, of being needy, of being something less than the stellar example of perseverance and positivity that people have made me out to be. I was afraid of detracting form someone else’s encounter with God. I was afraid of letting myself down in the process of letting them down. And when I tally the plusses and minuses of the weekend, I come up short.

Next year, if I go (which would only be if they take me up on my offer to lead a workshop or two on dealing with chronic health problems), I will be honest—I need my husband and I will need him there with me. There are just too many complicated things that he helps me with. We could go up in his parents’ RV, stay together in good comfort, and I would have 99% fewer things to be distracting me from all that I could glean from other people’s wisdom, others who are kind enough to share what they’ve learned throughout their lives.

This weekend I learned I can do it, but I can’t do it well without my beloved partner.

 

Introducing… Grynne and Bearrett!

Click photo to see our first day at Home!

Grynne & Bearrett