Monthly Archives: June 2012

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Mental Pacing

I’m getting a little restless. I hate the whole recuperation stage of laying around all the time, painful movement, painkiller-clouded thoughts, and isolation. There is good news: they were able to place the catheter! The surgery did end up being more invasive than they had planned, and they had to make an incision to find where they could put the catheter, so the recuperation is taking a little longer than we had hoped. However, the catheter is in there and the flush they did worked, so right now it looks like peritoneal dialysis will work. Thank you, everyone, for your thoughts and prayers as we went into this surgery. They were felt.

This is right after the surgery. Thus, the glassy eyes.

Now I just have the sluggish process of recovery to navigate. Unfortunately, painkillers give me anxiety and hallucinations, so I generally start weaning myself off of them the day after a surgery. It means a little more pain, but also fewer dreams about threatening people standing over me and whispering. I’m also walking around all the time. It sounds counterintuitive, but the more I get up and move, the better I feel. I can’t do it for long, in fact, I can’t even sit up for long, but I try to walk every chance I get. However, the worst part of recuperation is the restlessness and depression. It’s hard to be in one place for weeks, and my mind starts to rail against the situations that have brought me here. I know it’s not rational, but I get angry and I start pacing like a wild animal in a cage. Except I’m a little weakling right now, so I mentally pace inside of the bone cage of my brain, and that is even worse.

In addition, the entire world, my entire world, is having babies. You are probably thinking that I am exaggerating, but in my neighborhood ¾ of the women my age are pregnant or just had their babies. In fact, of the maybe six friends with whom I’m closest here, four are pregnant, along with my sister-in-law. Two other sisters-in-law just had a baby or just received confirmation of the baby she is adopting. None of this makes me bitter or angry; that’s not how it works. I am thrilled both for my friends and family and for the joy I will get in having so many more little people in my life, but, as I sit in my bed, constantly shifting position to try to ease the discomfort and trying not to feel depressed, a small part of my mind keeps asking,

“When is it my turn?”

Then comes the real terror:

“What if I don’t get a turn?”

We were working through the steps to adopt when I was told my kidney was failing. Having to stop that process to focus on my own health was the worst part by far of getting sick again. Not being able to have a family is the most tender, the most raw pain I have ever felt, and as I struggle to rise above the physical and emotional lows I’ve hit at the moment, it is uppermost on my mind. I don’t talk about my infertility much, and I’m not putting it up here because I want sympathy or even advice, because it is far too aching a wound to tolerate much of that, but I want this blog to be honest and real, and I feel completely caught up in the pain of this aspect of my shadows right now. This blog can’t always be about overcoming adversity, it’s also about living through it, and I guess I’m just not through this part of it yet.

I’m sorry to lay all of this on you; I try to be positive most of the time. Maybe once I actually start dialysis I will start feeling stronger and better able to deal with my burdens.

Right now, I just keep pacing.

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“Brim with Joy”

In a little under a week I’m going in for surgery, so for these last few days Kohl and I made a list of everything we wanted or needed to get done, and we’ve been working on checking them all off. Unfortunately I sleep for half of every day and Kohl is constantly busy with all the various film projects with which he’s involved, but we’re still trying.

Some of the things we have on the list are getting our house totally clean, taking family pictures, putting my herb garden in order, and going swimming (I love swimming, but I’m not allowed to go once I get my catheter placed, so it’s my last chance for a while). We’re doing pretty well on the list, almost entirely because of the efforts of Kohl and others. Yesterday, I was feeling pretty terrible, and while I slept Kohl picked up, straightened, washed and vacuumed every room in our house. I feel a lot of guilt when he does that, because I know that most of the clutter is mine. Kohl despairs over what he calls my “piles” and it’s true: by each of my habitual resting places, like my chair in the living room or my side of the bed, I keep a stash of the books I’m reading, the projects on which I’m working, or the mail I need to go through. Poor boy, he hates clutter. Thus, my guilt when he has to deal with mine. He worked so hard, too, not to berate me for it. I love that man; he is so committed to being the best version of himself, and he succeeds so well. I’ve never met anyone so talented at setting personal goals and achieving them, even when his wife is too ill to do her share.

We also had a wonderful experience with family pictures. I’ve been trying for a few months to set up some sort of photo shoot with one of our many cinematographer friends, but the thing about those guys is that they’re always busy shooting commercials or movies. Trying to fit my sporadic bouts of health with that type of schedule just never worked out. I had given up on the idea, and I was thoroughly disappointed. We haven’t gotten actual family pictures, just Kohl and me, since we were married 11 years ago, and taking them while I am on dialysis is not really an option. Dialysis changes the way I look drastically. It’s as though my entire body knows that something unnatural is going on, and the actual muscles shift in revolt. That’s not it, of course; I’m sure that it is just a combination of the extra fluid in my body and the lack of energy and nutrients that make me lose color (you didn’t think it was possible for me to have any less color, did you?) and seem to change the shape of my body and face. Regardless, I thought getting pictures was something else I was going to have to set aside until I got well again.

Then, last week, a photographer friend, whom we had really only met once in person before, contacted me and offered us a photo session out of the blue. She had read this blog and felt the urge to do something nice for us. I explained that we would have to do the shoot in the next few days, since my surgery was so close, and she immediately scheduled a time for us. We spent a couple of hours shooting all around my beautiful neighborhood, and every picture I saw was stunning. (I strongly suggest you check out Briana Marie Photos on Facebook and online; she has some wonderful work.) I’m so excited to see the rest of them, and I am a little overwhelmed by the generosity of this sweet woman.

This is one of my favorite pics that Briana took.

In fact, I feel blessed to have so many people love and care for us. I have a good friend who called me up a couple of months ago and told me that she was going to be bringing us dinner every Wednesday, so I should just start planning on it. (Kohl got a huge kick out of that. “Finally; someone who knows how to talk to you,” he said. He thinks I am sometimes too focused on being independent.) I have other friends who will randomly call me up and tell me they made extra food, can they bring it by; or they’re on their way to the store, is there something I need; or they have some free time, would I like to get together and crochet? Some of my friends even set up a party so that I can go swimming the day before my surgery! I have family members, good friends, and people I barely know all sincerely offering to be a donor for me, and I have a couple very special people who have told me they are willing to be a surrogate so that Kohl and I can have the baby we’ve been wanting so long.

I am overwhelmingly blessed in and by the people I know, and I am constantly astounded at the amount of love that we have received from so many. As I’m trying to get my life in order this last week, I am feeling remarkably calm and happy. All I find myself thinking about is how lucky and grateful I am for my beautiful life. Have you heard that phrase “brim with joy”? That is how my heart feels right now. I have been so well taken care of, and I know that, regardless of the outcome of this surgery, that will continue to be the case. To all those who have shown me such unconditional love, thank you. To those who have served me, or prayed for me, or sent some of your thoughts my way, I am so grateful to know people like you.