you must be contagious

Rosette, my friend from Africa, asked “Why do people not visit one another when they are sick? They like to say ‘Oh you are sick. I will get sick, too.’ And they stay away. It is not like that in my country.”

I paused to gather my thoughts and decide whether the honest answer would highlight a virtue of Americans or make us look as odd as my friend seemed to think we were. I clarified that the generalization that “Americans” avoid sick friends might be a stretch, but that her observation was keen. I think “we in general” avoid the sick because
1) We’re AFRAID of getting sick.
2) We believe the only way the other person will get better is with rest, not an INTERRUPTION from a visitor.
3) We don’t like to feel HELPLESS.

All of these “reasons” are a bit irrational when analyzed deeply. Headaches and 5 day old flu aren’t usually contagious. As much as rest is beneficial, a happy heart can be an even better cure. And as humans, not just Americans, we will be helpless at some point in our lives. Typically, we like to put our best foot forward and hate seeing others or being seen by others when we’re less than our best. Therefore, it’s just easier for everyone involved to stay away until everyone is back to equal health status.

My explanation didn’t suit Rosette though. “But when we’re sick, that’s when we need others the most to be involved and be with us, not to hide.” We both agreed that assuming what the sick people need is not always the best practice since deep down a sick person will want a friend but probably doesn’t have the energy, humility or foresight to offer an invitation stating such desires.

I thought about this question a lot today. With each rerun in my head, I realized my own role in this cultural faux pax as she saw it. Even worse, I’m not exactly sure how to respond. In a situation when a person is sick for a couple days, a dash to the store for a Gatorade and get well card is easy. But a lifetime of sick also demands attention. Perhaps bedside monitoring is too much, especially for a person who just wants to sleep. But something must be done because
1) I can’t catch it.
2) Interrupting life is inevitable.
3) Feeling helpless is not helpful, but being hopeful is.

A fine balance lies in the relationship of those who are sick and those who are well. Establishing a workable balance might happen for a while, but something will tip the scales on one side or the other. The assumptions made about what maintains the balance will also keep the relationship from finding true equilibrium.

Rosette’s observation clued me into a possible cultural defect. But I believe with the right amount of effort and selflessness, it can be and is worth repairing.

Scheduling Perspective

Since my sister has been diagnosed with Louie, calendars in my world and hers have been changed drastically. They say Today.

Today is not meant to have a morbid connotation. Yes, there’s always a possibility that Louie will completely take her life more than he does now, but then again so could Mr. Volvo driving next to me or Ms. E. Coli chillin’ on the counter. Death is inevitable. If this is not your reality, let me know. I’d like to know your secret of immortality.

Today is the reality we live in because we don’t know how energy levels, work requirements, special doctor or massage appointments, or even regular daily commitments will alter schedules and needs within a 24-hour period. Despite all efforts on her part to get good rest, eat right, nap, exercise when she can, take meds, and nap some more, my sister can’t always control her level of pain, fatigue, or energy. This is maddening for both of us for different reasons, of course, but still difficult to handle for ladies who are competently in control. We like a plan. We like to look toward the future. We like to prioritize efforts so more fun and productivity can be done later. But we can’t always.

So today I thought about Today. I realized how much of a scheduling perspective it required. I could see Today as a brief moment in time that isn’t able to offer a long enough period to do and say and see everything I want. But I could also see Today as a gift. Obviously, Today represents one more day of life, full of opportunities. But Today also requires focus and intentionality because Tomorrow is uncertain. Focus and intentionality are difficult sometimes mainly because as humans we’re made to run on autopilot a lot. But focus and intentionality are great because they can block out wasted energy of worry, anger, self-pity, anxiety, or self-deception. With only Today to live and handle, focus and intentionality make it possible for everyone, my sister and I and the rest of humanity, to live fully as we are able. We are given a chance to grasp opportunities to care for each other, our world, and ourselves. If Tomorrow were the only subject on our minds today, these feelings of uncertainty would most likely keep us from doing or feeling or knowing anything worthwhile. Some of the best things in life, like a new personal record in track, a warm cookie or a hug have to be experienced in the now of Today.

My sister has the real burden of scheduling because she has to consult Louie, the schedule slayer. I just get the emails or texts with the updates and thus write most things in pencil. But we both have something that Louie simply takes for granted and that’s Today. We have the benefit of perspective that Today is as an abundant a time frame as years and decades. Live Today. Sleep it. Share it. Love it.

pom poms ready!

My sister told me today her stomach hurt. I suggested eating peanut butter on marshmallows. The BRAT diet came to mind but she doesn’t like bananas or toast. I guess she could eat the RA and I could be a cheerleader. RA RA RA. Shish boom ba.
Um…

There’s not really a quick fix or even great suggestion. I try to recall what’s relieved similar symptoms in the past, but unless she’s “foggy,” my sister will remember way better than me. So I just make stuff up. Say it with confidence and truth it will be. Too bad she knows I’m a terrible liar.

I read a blog today called “My Wife Has Lupus” where the author wrote:
Sometimes she just wants to know that things will get better, or that the pain is temporary. I can certainly tell her that, even though I don’t know if it’s true. I don’t know that it’s not true, so I feel like I’m still being truthful.

How often should this we said about our lives in general, Louie or no? Work can be crazy, relationships confusing, conflicts bubbling and pain and sorrow showing up, unwelcomed.

At these moments when we can name the issue and then ask, “what will happen?” why not say, good will come? I don’t know the future any better than anyone else though I eat Chinese food as much as I can to practice my fortune telling skills with the cookies. I do know, though, that a statement that’s positive, optimistic and containing even an ounce of hope, even if it’s only a partial truth, can be just the relief needed or encouragement to carry on. My last paper for class or issue at work or my sister’s sleep schedule might not turn out as perfection, but at least we can move forward into these situations with a glimmer of the possibility. It’s the spoonful of sugar with all the other medicine that has to go down.

Ready? OK!
2-4-6-8
Tomorrow can turn out great!

ear training

Growing up in Wyoming I was exposed to two different languages: English with consonants in proper places (ie Let’s go. and waTer) or English without proper consonants. (ie Lez go. and waddER) Since moving beyond the borders of this mostly solitary state, I’ve encountered other languages and accents. Sometimes a bit of a southern accent came over my mom especially after speaking to her brothers in Texas or counting eight, nine, TIN. Spokane and the Pacific Northwest have a pretty neutral sound. A dropped “OO” sound in TO creating a word that is more like TAH is common and a hard habit to break, but no big deal. So my real “learnin’” came from my time with Africans. Not only did I hear several different languages and dialects of a certain African regions, but also their English rang with a completely new tenor. A little British influence kept me on my toes, trying to train my ears to new sounds for seemingly familiar words.

Training the ear was a must. Sometimes I had to interpret their English to host families who didn’t have their ears in tune yet. It comes with time, but the process was grueling. In the beginning I wasn’t sure if I was being laughed at because I said, “Repeat again.” for the fifth time or because the teasing comments said about me weren’t meant to be heard.

Ear training requires patience and physical growth. I’m sure if I Googled the subject I would discover how many new synapses are created in the process and how many other areas of the brain are utilized to comprehend a new sounding word. Those numbers don’t matter much. Realizing the effort required physically, mentally, and emotionally has to be experienced.

I’m learning to train my ear to a new accent. Louie Language. Subtle differences are noticeable but hard to interpret sometimes. My responses are sometimes wacky too as I try to speak “normally” without falling into this accent. But just like when I make larger Oh sounds when I hang out with my British friends, I sometimes fall into Louie language. “Why not a nap?” “I’m hurting.” “Can we hang out and rest today?”

But more than this stretched analogy is the issue with communication. Are the words and ideas of conversation with my sister or others with lupus always peppered with symptoms or results of lupus? Do I create meanings for words through that filter just because it’s part of the context of life? And are my words always heard that way? How do I train myself to speak plainly about issues, my needs or misunderstandings? As important, how do I hear and internalize concerns, needs or simple news without putting a Louie accent on it?

I’ve read in several books about the importance of communication in relationships that live with lupus. The realities of the illness require a person to say “not today” or “that’s beyond my energy.” At the same time, the hearer has to know what those things mean without taking a personal affront or judgmental or pitying stance. Likewise, the person living with the person living with lupus has to express her emotions and thoughts without guilt. And the hearer needs to realize its not a personal attack or judgmental statement. That kind of training is difficult. I think it’s more than synapses connecting; I think it requires a growth of the heart. Sometimes that’s where messages are interpreted properly anyway, regardless of accent.

A person who’s learned multiple languages and lived in various places might not hear/speak Louie language any better than me. But it’s worth the effort to learn.
Maybe after I get a good grasp, I’ll visit Louisville.

Purpose even in Paranormal

I'm a preachin' woman or should I say I had an opportunity to relay a little bit of how God is working in my life recently. I spoke about living everyday on purpose. A simple statement and yet so hard to do. Intentionality is the name of the game but how do we do that? How do we live on purpose when we have so much to do? How do we keep a day of Sabbath when studying has to be done and the empty cupboards need to be filled? How can we show our love and affection as boldly and generously on March 14th as we do February 14th.

The subject of living everyday on purpose has touched my life with my sister. We can't wast time with meaningless things when those moments would otherwise be used preciously sleeping or...sleeping. Both of us have to adjust to everyday in this reality.

One thing I talked about at church today was living in "paranormal" days, "beyond normal" days. Since each day is a new day that's never been lived we have an opportunity to make it special, one to remember, even a Holy Day because it's WHOLE if we devote it to God's purposes. After reflecting on death, diagnosis, and chronic illness I said, "Normal days after paranormal days such as those spent receiving news about shocking circumstances have to be lived in a new way, sometimes a daily struggle to figure out. But one way we make these 'new normal days' have purpose is to live out that reality. Living truthfully makes even those days WHOLE. It's a simple statement but it was probably my favorite line from my message because no matter what our circumstances, we can live truthfully where we are. If I denied my sister the ability to live with Louie, it would not only hurt her physically and mentally, but I would deny her the chance to live honestly as J. If I denied myself feelings of being bummed or joyful from simple delights, I would live a lie.

It's a tricky balance and something that we have to remind ourselves of quite often. Just as I plan my day around when she naps so I don't interrupt her with a phone call and she plans her life around naps, we have to be intentional about infusing the day with purpose, even if it's a simple as an uninterrupted nap and a worthwhile conversation afterward.

glory days

I read from Numbers 11 today and got caught up over this verse.
“…the Israelites started wailing and said, “If only we had meat to eat! We remember the fish we ate in Egypt at no cost- also the cucumbers, melons, leeks, onions, and garlic. But now we have lost our appetite we never see anything but this manna.” (v4-6)

It’s a funny and morbid couple verses under the circumstances. The Israelites were just rescued by God and Moses from horrendous and terrible slavery imposed by Pharaoh. They might have had meat and watermelon but I wonder how often that was the case. Would they trade whipping and hopelessness with a side of fried onions for unknowing yet manna, a constant reminder of God’s presence and provision?

As I thought about it, I remember times when I wanted to go back to how things were before Louie moved in. I know my sister thinks about that all the time. “Back in my day, I could cook for 5000 and be funny all in one afternoon…” or whatever. I remember staying up until odd hours in the morning, talking on the phone for hours about everything and nothing, loosing so much weight from all the laughter. I remember pulling all nighters at work just so someone else’s mistakes didn’t make any of our people look bad at performance time.

But I also recall those times were full of pain and lots of prayers. Something was off but how and why? A little bit (ok a lot a bit) of fear corresponded to this pain and uncertainty. The thing about Louie, he’s predictably unpredictable.

The other part about being here now rather than back in Egypt is just that. We’re here and so is God. He’s not still hanging out in Egypt, laughing at us for moving on. Instead, he’s called us to this place. The Israelites were God’s children wherever they resided, but they were obediently free out of Egypt. I am me 18 months ago at 2:13am just as I am me here. My identity has not changed. And neither has that of my sister. So she has a new roommate (bodymate) and I am a sister by association, but who we are as God’s kids is the same. If anything, we’re better off for the move. We’re better off without garlic and cantaloupe, eating plain bread. We have a story to tell and a life to live right here and now in the midst of whatever comes next. The past only enhances the perspective and makes the now so much clearer.

It’s easy to relive the “glory days” in our heads but the glory comes solely from our interpretations. Why was eating leeks so nice in the days of Pharaoh? Because that was the small bit of joy in a time of pain. Why was talking all night better than going to bed after dinner as can happen now? Because that was a small gift to share with a sister in the midst of unpredictability. But today could be a glory day if I file it away as such. A recent glory day included pizza and a movie and a bit of talking. It’s minor. It’s practically manna. But it’s where I’m at now. And that’s ok. Wailing has it’s place but going back to garlic fish is a life I’m glad to have learned from and moved passed.

Louie Legs

I woke up on Tuesday morning with Louie Legs. Or at least that's what I imagined they would feel like- no scientist or doctor has confirmed it yet. But I know that when my sister says her legs are dead and can't move and my legs are dead and can't move it's not something we ate.

Now I don't actually have Louie Legs. Instead I'm insane enough to be running a half marathon in a couple months for the first time. Does that qualify for half insanity. So dead legs for me are actually fatigued, overly worked, unappreciated, under coddled and nursed legs. They hurt all around probably like logs would which were just cut off the tree if they could feel. My sister's legs on the other hand, scratch that, on the other foot hurt from the inside out. The bones hurt. I think the hone marrow is wading war or having a ridiculous party without caring about the cranky, creaky neighbors (ie the bone shaft and rest of the leg).

I made myself get up but knew the moment I went vertical how Sis feels even going pee- too much work. I made myself work out on the elliptical (it was cross training day thankfully), hoping all the deadness would either ooze out my toenails quickly or resurrect to full working order. Some things aren't even attempted by folks with Lupus. Oozing or resurrecting death is usually out of the question. Rolling over for another hour or two of sleep is a much better option.

Well, my Louie Legs must have been jealous of the extra attention my sister gives her legs because no type of revival came to pass. Instead, after doing my bidding for most of the day, they took me to bed for a nap. (That focused dragging to bed might have been the only enthusiastic movement of the day.) Naps end quickly, though. My legs refused to hear the alarm. We compromised- one more trip out and then early bedtime. By the end of it all, my legs were a little jealous but completely empathetic- when Louie says play dead, it's not time to shake.