Noticed

When you’re sick, you enter a high-need zone that freaks a lot of people out. You can’t rely on your own strength and ability to do the simplest of tasks, and this means that those around you are often called to higher levels of responsibility.

When I first got sick, I trusted very few people with the real intensity of my health condition, especially as things worsened and I needed more physical support. I learned to live around my health so no one saw. The wheelchair was my freedom. Living by myself kept others from being burdened by my issues. I wasn’t being self-centered; I had needs that HAD to be met. But I never stopped noticing those I loved. I never stopped feeling close to them, wishing I could do more to show my love for them.

Now, as I’m walking through this treatment again, I’m going through the same thing. Pete has had a couple of rough weeks himself, and I feel helpless to do anything to support him. Piper has the chicken pox and Bredon is cutting four or five molars in his tiny mouth. I’m sitting on the couch trying to relax so that their fights don’t set off spasms in my body. I wait for Pete to bring me food because I get so lightheaded getting up.

I really, really, REALLY don’t want to sound like I’m complaining. This is what IS in my life right now. This, and the morning light that comes in, the air conditioning that keeps us cool, one meal idea and another and another, the minute that was, the next minute coming. We are living right now, and I’m noticing it, noticing it so that I cry when things touch me, hug my kiddos a little closer, breathe a little deeper and a little longer when they need help. This is the best sort of thin place, when the worst is here and you see that and you see the best for what it is too.

I don’t know if I’m showing my love any better now than I did then. I miss reading others’ lives, having energy to comment and invest, miss working solid days. I miss my functionality, but I know that this “worse” is a sign that I am getting better. I hate taking my pills, knowing that even the small reprieves I was getting won’t be coming until this runs its course. But I take them because feeling alive again later is worth a lot of helpless now.

I still see, even if I can’t do anything. I still love, even if it’s stopped up in my heart and pretty helpless to act. The deepest gift to me during this time is the heart-sharing I hardly have energy to return. I have so many in my heart. Do you think that maybe sometimes, the noticing might be love enough?

By kelle | July 18, 2011 | from here, health |

Pause

It comes as a surprise – and I’m expecting it. At least, I thought I was.

I sent several messages the other day, happy about feeling stronger, thinking I was on the other side of the initial herx. I was happy not to need to ask for anymore help on this round. I must have been on a bit of adrenaline, because the next day, I crashed. Hard.

I didn’t realize how far I’d come from not being able to do anything without overdoing until this treatment sent me back. I didn’t realize how much I do at a computer – in spite of my health – until sitting up became practically impossible. I took the month off, but I still have plenty to do. I’ve barely had energy to post, which is why I have been so quiet here this week.

: :

My brain is active, but my body refuses to function. I lie around, feeling lazy. If I can think, shouldn’t I do? But if I do, I do too much, and I pay for it with worsening symptoms the next hour or the next day – or two. This is the hardest thing, necessary rest.

I writhe under it. I’m sick of TV. Too cross-eyed to read. Too tired to type. I am isolated with my thoughts and the necessary, always a little uncomfortable.

I weigh my life in the balance, and it is wanting. I am wanting – or perhaps I am not wanting and this is the problem. Photography is something I do – artist is someone I am. I am not a businesswoman. I don’t know how to create a crystal-clear brand that will make my business soar. I’m not hard enough to rule out things that I love, push away people that matter. I begin to understand the inspiration I follow. I begin to think that I am in this hard, alone place because I am doing something – choosing something that nobody does. It is not recommended. The competition in my industry doesn’t allow it.

I pull back a bit. Remember that I don’t have to succeed at the business. I created it so I could do what I love and get paid for it – whatever it is. I get up and the morning and I am who I am. I don’t put things on, as a general rule. You know. Other than clothing. Authenticity for me means letting it all hang out. Not having anything to hide. Not choosing who I am or my own acceptable weaknesses.

: :

I’m uncomfortable now. Uncomfortable because I am not perfect, and I’m not what I want to be, and I’m not what anyone else wants me to be either. I would rather not live here like this. I would rather be off the couch and doing. I would rather not need help and not know how to ask for it – or where. I would rather not need the grace I must accept or despair.

I sit and wait, and let the treatment have its way, let the kids do what they will do, let the world keep spinning without me, hoping I can come back again and be a part at the end of all of this.

By kelle | July 15, 2011 | health |

Opinion I

I had a thought last week that I might dare to post one real opinion of mine per week. I don’t often express my opinions – not because I don’t have them, but because I don’t want to polarize people and start arguments or create debate. I don’t have the energy to follow up and defend my opinions; they are simply conclusions I have drawn about things, and I don’t want to force them on anyone else.

BUT, that said, I do have them, and I think I will try posting one per week, so maybe you can get to know me better, if you like. Here goes nothing.

I don’t generally hold a lot of opinions about child-rearing and how it should be done. I don’t feel that I have a lot of authority on the matter, since I’ve not read all the books or listened to all the advice, or even poured all of my time into learning how to mother my kids.

I do get a lot of compliments about my children, however. They are smart, funny, cute as anything, and while they are definitely kids, they are both generally pretty sweet when others are around. This morning while I was at my chiropractor’s office, several of the other women there commented to me that my children were well-behaved, unlike most of the other children who visit the office. They said that “the kids run around screaming, while the mothers ignore them.”

I’ve been chewing on their comments for a while, and I’ve developed an opinion. Which I am going to share.

My kids have learned their boundaries through independence.

I have rarely had energy to chase them down, discipline them, and conform them to my will. Pete and I have childproofed our house as much as we can, and I pick my battles with the kids. Once they know how to do something and I know they won’t get hurt, I allow them the freedom to do it. I don’t schedule every minute of their day, and when they have needs, I do what I can to meet them. If I can’t, I ask them to wait until I can, or until Pete can.

I don’t ride herd on my kids. When we need to establish a boundary (usually after we realize that they’ve crossed it – still learning here!!!), we explain the boundary to them and tell them that next time, they will get spanked if they cross it. When they (inevitably) cross it, we follow up firmly, explaining what they have done. This works very well with Piper, who helps to keep Bredon out of trouble – I have heard Pip telling Bredon on more than one occasion, “Mom isn’t going to be very happy about that…” Which is always my cue to check out what exactly they have been up to.

I think (look! opinion language!) that kids who are out of control are generally the result of over-dominant parenting. Sometimes, I think parents are so determined to set the boundaries for their kids that they have not seen them as people or allowed them the freedom to make choices and decisions and mistakes (even toddlers!) that any human being would make. Some kids are more easily dominated than others, but strong-willed children generally have a very strong sense of self, and if a dominant parent gives them an inch, they will take the mile and then some. These kids take advantage of breakdowns in the authority structure to establish their own independence, and they will exploit every opportunity they receive.

Pete and I really try to maintain a relationship with our kids. We see them as people, and let them see us as people. We have weaknesses, and they know our weaknesses. They have weaknesses and we know theirs. We don’t attempt to prove to our kids that we are more powerful or more right than they are (though there ARE moments when we need to explain to them that “we are the parents and this is just the way it is”). We take a hands-off/hands-on approach to our child-rearing. We allow them as much independence as we can, which helps us, because we are not constantly legislating their every move. Then we get our hands on them with as much real love as we can give them. Some days it’s not much, but on the worst days, I’ve found that a hug, a smile, a quiet word, or a cuddle can make all the difference.

And there you have it. My opinion. It’s what we do, and what we’re still learning. But I’m guessing from the results I’ve been hearing, it’s working. Again, my opinion. 😉

By kelle | July 11, 2011 | grace, this is us |

Routine

We’ve settled into a bit of a routine since I began my treatment.

I take my pills twice a day, morning and evening. I get about an hour and a half of clarity before the dose sets in with the herxheimer, and I spend that time doing what I need to do while sitting up. Pete and Rachel (my friend) have been here to help with the kids’ needs, since it takes me four times as long to move as it did before I started treatment.

Once my herx takes effect, I’m pretty much no good, which makes me glad that Pip and Bredon are independent enough to fend for themselves a bit. They can both get water bottles themselves, and Pip is pretty free with the food dispensation for snacks just 20 minutes before lunch. They’re both scavengers. It’s out of control, and it’s just what we do.

I’ve had to spend only a little time in bed, which has been nice, because I’d much rather have something going through my brain – even if it is just reruns on USA. My new laptop has also been getting a workout with me on the couch this week while Pip watches Sprout. I’m pretty convinced that The Wiggles may be possessed.

The worst of the herx begins about two hours after I’ve taken the treatment and lasts for about five hours. During this period, I don’t want to move. At all. I can feel my body sinking into the couch, falling down internally with the burden of disease. Pete comes home around noon to make lunch, and by that point, my brain fog is at its height. My verbal skills are significantly reduced – getting words out is physically difficult.

As he leaves again for work, we put B down for his nap, and then Pip and I finish out the worst of the herx quietly. I eat my lunch slow, one meal that B doesn’t fight me for. (He likes to eat off my plate – it doesn’t matter if he has his own.)

Once Bredon gets up around 3, we hang out in the living room, and they start their “we’re going to drive Mom crazy until Dad gets home” routine. And they do. It is a welcome relief to have Pete come home around 6:00.

We start work on dinner then – though I haven’t been much help. I can offer ideas by dinnertime, but I chase myself in circles trying to help, so it’s actually better if I stay out of the way and just hang out near the kitchen while Pete puts things together.

I love that my clearest moments of the day are at the kids’ bedtime. We go into their room, read stories, and tuck them in, not that we expect them to stay put. They play until dark – about half an hour – and drop off to sleep by themselves. Pete and I clean up and vacuum (well, okay, I’ve not really been much help on that front this week either), do the noisy stuff while they’re still awake, and then we hit the couch together and I take my final dose for the day. The worst of that herx happens while I sleep.

I’ve been noticing improvement over the last two days; my body seems to be adjusting to the treatment now, and I’ve caught myself moving slightly faster than I thought I could. I tire very easily though – even outbursts in conversations leave me winded and woozy. You wouldn’t think it would be so easy to overdo.

I am hoping for a little more energy next week – B is approaching two, and he’s becoming quite the defiant little critter. He needs more direct supervision than I’ve been able to give him. I am just glad that he’s been safe this week. This stage with Piper wasn’t so bad because she has a survival instinct, which it seems her brother missed when God handed them out. This boy-kid has no fear. Which isn’t great for his mother’s nerves.

By kelle | July 8, 2011 | from here, health, this is us |

Lingering

I do a lot of my thinking in the shower. Maybe because it is one place where I really have no obligations to muddle up my thought processes. There’s no one there but me and God. This morning, I was remembering a letter someone sent me, sharing how she had been praying, and God put me on her heart. She told me that she believed God wanted me to be healed. For all the years I’ve been sick, I never considered that He might want that.

I don’t know if I figured that I deserved to be sick, or that it just was what it was; I never really expected a change. My friend’s email left me wondering. I couldn’t chalk it up to the well-wishing others had done over the years. In my heart, I knew I couldn’t just write it off as only emotional healing. She was speaking of physical healing. It hadn’t really occurred to me over the years that I could even want it, especially after the MS misdiagnosis.

But what hit me in the shower this morning is that even if I do get better, even if I do heal, the years of depression and illness will have taken their toll – on both my body and on my relationships. A wound doesn’t heal without leaving scars. I can’t ever be the person that I was before I got sick, before my heart got broken. I don’t know what to do with that. I liked me back then, oblivious though I was. But if I’m to be honest, I have to admit that I wouldn’t want to be that person again.

I had lots of dreams then, but they were undefined – anything was possible. Now my dreams are more defined. I know what is real; I know how to live in the moment and leave the future well enough alone. I think it would be naive of me to pray that God would heal me without scars. He didn’t even do that for Christ.

Whether I get better or not, I will always carry around in my body the neurological damage caused by the Lyme disease. If I do get better, maybe I can live a little more whole, still taking care for myself, but having a larger capacity to love on others without so many physical needs as I have had.

I don’t deserve healing. I can’t begin to understand my motives for wanting it/not wanting it. I think at this point, I am just sitting here going, “okay God. I’m here. Do what You want.” And trying to trust Him for the results, whatever they may be.

By kelle | July 7, 2011 | from here, health |

Bare

When everything strips down bare and I stop trying,
I smile again,
involuntarily
when I’m not fighting,
meeting expectation.

There is a comfortable –
almost delightful –
blur
around the bare edges of my life
that leaves me smiling.

My necessary colors,
happy
shades of blue and comfort
and living where I am
making peace and easy as

the dust is settling;
my dust is set on Him
who holds my bare self without trying
and I free-fall
remembering joy.

7-6-2011

By kelle | July 6, 2011 | God n me, health, poetry |

Kaleidoscope

Kaleidoscope. It’s one of those words that sounds as absolutely cool and complex as the object it describes. It is light and dark and crazy and fun and color and sparkle and imagination, all tangled up and out of this world. It takes bits and pieces of light and color and creates an experience that takes your breath away.

This color in the dark makes me happy today. When I began my treatment, I half-expected the medication to do its worst immediately. It didn’t. Every day, I’ve been descending further into the black as the drug wreaks its unrelenting havoc on the disease. Every morning, I wake up a little weaker, a little further down the memory lane I pretty much wanted to forget.

I’m scribbling small, scattered thoughts here to remember the days. I know I forget the moments in the brain fog. I forget the things I am thinking, feeling. Sometimes this would be better, but it is so much of my life. There is much I did not write before that I don’t remember now.

Yesterday was a waiting. An “I’m so bored but I don’t feel well enough to move around and push myself” waiting. Today, it is an active “I want to rest.” And I’ll probably do it from bed, instead of the couch. It is strange watching it happen in me. With the drug at work, I feel strong against the disease, but weak against the heightening symptoms. I’m tired, but energized against an enemy. I feel upbeat at the same time I feel dread. It’s a kaleidoscope paradox.

Pete and I were talking yesterday about what Jesus said in Matthew, about the rain falling on the just and the unjust, about treating others the same way God treats us – the same if they are brothers or enemies. This, I think, is the godly sincerity Paul was talking about in 2 Corinthians. And this was God reminding me about walling myself off to brothers only, being the same person to all, and not just to the people I choose.

I am looking for the points of light to mark the dark today.

: :

Several people have asked about my treatment; I don’t have time or energy to explain much, but I don’t want to leave you hanging, so here’s a short run-down for you.

I am undergoing a 2-3 month comprehensive treatment beginning with an anti-parasitic drug taken in conjunction with several natural treatments and probiotics to break down the mucus protection the bugs put out to preserve themselves. The drug should deal with my coinfections as well as the Lyme bacteria. Once this phase is complete, we will begin to work on immune system rebuilding, and complete the course of treatment with Lymph moving to lessen the toxic burden on my body.

This first phase is the most intense phase of the aggressive treatment, and as it attacks and kills the disease, the die-off causes a herxheimer reaction, which backs me up through my old symptoms in a much shorter progression than I took getting through them the first time. Once I am through this phase, I should begin seeing improvement across the board, and while I will have to take things slowly at first, I should be able to have a more normal life through the rest of the treatment and once it is finished.

By kelle | July 5, 2011 | from here, health |

Exist

Pete pulled out an L’Engle book for me last night, A Circle of Quiet. Diane Cole from USA Today describes this book: “L’Engle’s chronicle is filled with a sense of the adventure of life, as well as with an awareness of the terrible surprises that lie in wait for all of us… [A work] by turns joyous and melancholy, painful and touching.” She describes my own life too, not just this memoir, and I have to admit to a tear or two last night, wishing L’Engle hadn’t died last year (or was it the year before?). She is someone with whom I think I could have been quiet, and I know very few people like that.

L’Engle writes, “… I’m apt to get drunk on words, to go on jags; ontology is my jag for this summer… Ontology: the word about the essence of things; the word about being.”

When you get sick and go two years collapsing undiagnosed and then receive misdiagnoses and go through car accidents and get your heart broken and have babies and lose loved ones – you learn a lot about life and about how it ought to be lived. You learn in the not-able-to-live that there is life to be had, and that you weren’t placed here to become something else. You were born to be. You exist. This is God’s image in you, that you simply ARE, and you are conscious of it.

This is why Gospel means so much to me, why Jesus’ death and resurrection are the battle cry for my being. In Christ, I am a new creation; there is nothing holding me back from simply being before God. Like a child, fully in whatever moment I am in.

The moments stretch out, and time means more than it did when I was racing it. It is almost like taking tea with God, and we sit near one another with eternity to figure “us” out; our relationship exists in the ease of grace. In my pain, I am all too aware of how life turns, too sure of its inevitability – but finding this rest here, now? I begin to understand how to love life and be loved by Him in it; I begin to see how I may love Him too, in spite of the fact that I cannot do, only be.

I feel the ache in my body, bugs and arthritis and pain shooting up and down and everywhere, and I lose my will to pull myself up by my bootstraps and fix things. I watch life play out around me and invest as I can, laughing where I can, leaving control well enough alone.

I am breathing. I exist. And the doing, that can be set aside for now. After all, I suspect that He changes us most in our being.

By kelle | July 4, 2011 | from here, God n me, health |

Suspense

It’s a little like being in labor, this treatment. There is no way out but through for me, and I know how it will play this time. I am not unafraid of the return of old symptoms as the medication runs its course, searching the disease out in its hiding places. But yesterday, when nothing felt different from one of my normal down days, I began to want the old symptoms. To know that what I am doing is working. One can only take so much early labor before begging for transition. I suppose my patience level is shorter than it should be.

Today I feel the effects, and I feel my body descending into the old, worse places, as if the infection is reminding me, “if you leave me alone, I will just live here without bothering you like this!” But I know it. I know how it has been steadily weakening me, how desperately need it gone. Function has been so important for so long, but now, now I don’t have that luxury, or I risk losing it altogether.

It’s a metaphor, the way all this mess goes. First the die-off and I don’t want to live, then the life I’ve been hoping for and unable to live because of the sickness holding me back. Something about “losing your life to find it.”

So I wait, letting the medication do its work, letting this part of my life be my praise, though my mouth doesn’t open easily this morning and my arms feel like lead weights, though my thoughts are sluggish and all I can do is what I can do.

I don’t know what to expect on the other side of all of this, but I suppose that is a metaphor too, this walking out on faith, hoping for a promised result.

By kelle | July 3, 2011 | from here, health |

Reckoning

I’ve been figuring lately, not in the numbers sense, but in the “something isn’t right, but I know I’m not wrong” sense. I haven’t been able to put my finger on it until yesterday, when I quite tripped across a thought.

“It is not about being right.”

I’ve thought it before. I aim it at others. But I somehow escaped my own scrutiny. How little I know my own heart.

: :

I’ve mentioned before that pain does strange things to me. I find my corner to stand in and I build walls around myself with my “right” and my “good.” I might not argue it out loud, but the anger in my heart grows until I find myself lashing out, and I don’t really even know why. I suspect it is that their “right” feels like a threat to me. It is worse when half the world believes that right and I stand alone knowing more, knowing deeper, and I’m looking at God and asking “why have You made me this way?” and “why did You give me much to require so much of me?”

It is the people who truly ARE, the people who are living out their faith – in spite of the way the crowds raise up their “right” to acclaim – it is these people who give me pause in my self-appointed prison. They are the ones who offer me the grace to STOP. To stop arranging and rearranging my life to make it look more right to everyone else. To stop sharing truth in anger and self-defense. To accept that I AM human, that I DON’T know all I need to know of God.

I shout the Cross in my anger. I am right. It is probably a good thing that this is what I am limited to shout. I have strong opinions on many other things. But dwelling in the shadow of the Cross keeps reminds me that I have no real “right” to stand on – only redemption I could never have earned.

I become for a bit a practical agnostic. “If I can’t know what is right, how do I know if God is weighing in on my life or on circumstances around me? What difference will prayer make anyway? If I pray for healing and take my medication, will God be the one who has done the healing?”

: :

“It is not about being right.”

No. It’s not. It is about knowing Him. It is about relationship. It is about living where I am, as I am with God doing His work in me, and letting down my walls of right in order to exist simply in Him.

We are told to reckon ourselves dead to sin and alive to God. Without sin in the picture, I am given free access to God for relationship. But relationship requires humility – with Him and with others. I am not the only one allowed into His presence – Christ died for all. I am not the only one who lives under Cross-grace.

I am not the only one.

But I am one.

And I do believe that He loves me where I am, regardless of my fears about the “right” of others and how I may be perceived or hurt because of it.

So it is here, I think, that I learn to reckon myself alive to God. To say that “He loves me and He died for me, and He is at work in me, and that is everything I need.” To say that “I am human, and He is God. He is the only one who knows.”

: :

They say that “prayer doesn’t change God; it changes us.” I don’t really know how true that is, because for me, the change often comes before the prayer. But I know how I long to pray sometimes, and how unsure I am that He might listen and hear me.

I begin my Lyme treatment on Friday. I am scared. My doctor says the most important part of my treatment is my need to believe that I will get better. After ten years fighting this thing, I don’t know how to believe that. It seems easier to pray than to believe that I have the strength in myself to expel this disease. But even then, I’m not sure I have enough faith to pray believing that He will heal.

I am so exhausted. All I want is rest. I don’t want to read or write or take pictures or process pictures. I can’t remember not being tired. I can’t remember what having energy feels like.

As my “right” has been slipping away this week, I want to fall into Him. Just to trust Him to take care of things, to take care of me and my messy, human heart.

I suppose that the humility I long for begins with a reckoning.


By kelle | June 29, 2011 | from here, God n me, walk with Him |