Baby, It’s Cold Inside

For the last year I have been grappling with some unwelcome truths. I’ve been silent on this blog in large part because every time I start to write, every time I enter the cutting whirlwind that my mind has become, my spirit shrinks away from the exhausting task of explaining all my sorrows. I read a description once that said that despair was a cold desert devoid of life, and it’s true; sadness is a hollow pain, anger is a stinging fire, but despair is an aching emptiness. When I think too much or too long about my current situation, I feel like I am endlessly cycling through those three emotions, though I seem to spend most of the cycle in that cold desert.

Not that my life is without happiness. Even without the little delights like the impossibly blue autumn sky, the wind soughing through brittle yellow leaves, and the so very comforting feeling of cold feet slowly getting warm under an afghan that brighten my days, there is that little sun, that precious joybug, my Little Bird, who fills every corner of me with happy light. No matter how hard dialysis was, no matter how ragged I feel, physically or emotionally, knowing that I am coming home to her calms and lifts me. Being a family with her and Kohl is the most important thing in my life.

That highlights one of my pains, though. I feel as though I am being robbed of my time with her. Three days a week I go to a dialysis clinic, get hooked up to a machine through a catheter attached to my jugular vein, and sit in a chair while a machine cleans my blood for four hours. I leave a little before six, before she is awake, and I get home around 10:30, so it’s not as though I am missing huge chunks of her life, and an unexpected benefit of my absence is that she and Kohl have some fantastic daddy-daughter time on a regular basis. Still, after twelve years of longing for her, every moment feels precious, and I resent missing out.

That’s my sadness.

The anger comes because it seems unfair that my previous surgeries have directly contributed to my high level of antibodies, which is the reason neither of my brothers who have been tested are able to give me a kidney. I am frustrated that it took so long for my medical team to get my hemoglobin levels under control, which led to four blood transfusions, another cause of my antibody level. I am tired of being pressured to get a fistula, a permanent joining of an artery with a vein in my arm. And every time I’m too sick to go to a long awaited outing, or I miss out on an important occasion because I have to go to dialysis or have a procedure done, I feel bitter that one more thing is being taken away from me.

The despair hits me when, after again running through the former two topics, I remember that because of my antibodies I could be spending years in this same situation. The helplessness I feel is both infuriating and debilitating.

The real emptiness creeps in because I don’t know how to talk to anyone about my pain and my loneliness. A terminal illness, like so many other kinds of tragedy, singles you out in ways that are almost unknowable to others. I remember once being asked by a family friend what it felt like as my kidneys were failing. I tried to explain by describing how I could feel my body dying by degrees, that every day I was closer to death.

“Well, that’s true for everyone,” she said dismissively.

I don’t know if she felt that I was aggrandizing myself and needed to be taken down a peg, or if she was just uncomfortable with how open I was being, but it was one of the first times I realized that very few people want to know how I am feeling when they ask how I am feeling.

In addition, I already feel like I talk about my kidney disease all the time, though not in great depth. You know those people whose lives are so consumed by one thing that all conversational roads lead to their own particular Rome? Sometimes I feel that I have two discussion settings: my daughter and my disease, and, believe me, stories about my little girl are a lot more entertaining.

I’m not sure how to break the cycle. Join a support group? Break down in front of one of my closest friends and hope they aren’t made horribly uncomfortable by a situation they can’t do anything about? Spend all of my time reading escapist literature to avoid my pain?

I don’t know the answer. Right now I’m fighting my way through each day, trying not to let my imagination speculate on how many more days of struggle might be ahead of me, and writing this post because, unfortunately for all of you, this blog is about kidney disease and not my daughter.

You guys really signed up for the wrong conversational default.

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Solace

This week has been hard.  I have spent basically the entire week curled up in bed trying to decide which hurt more: my stomach or my head. My head ended up winning. Hurray.

This is particularly frightening, because last time I was on dialysis one of the complications was a bout of Pseudotumor Cerebri. That’s Latin for spinal fluid collecting on the optic nerve, building in pressure and causing shatteringly painful headaches and blindness. I was blind for a couple of months before I had a surgery that relieved the pressure and restored most of my sight (although it is still way too easy to sneak up on me from the left).

This was the fear that kept banging against my skull with every painful throb of my painfully throbbing headache this week. Combined with my OCD, which tends to get far worse when my kidneys stop regulating my hormones, it transformed me into a gibbering basket case.

Now I’m going to say something that may surprise you based on the previous three paragraphs, which strike me as exceedingly whiny. I’m not writing this post to complain. I hate complaining; it makes me feel weak and victimized. In fact, letting the above details get out to anyone besides Kohl riles up every instinct for privacy and self-preservation that genetics and breeding have given me. No, I wrote this post to tell you about something marvelous.

There are two things that brought me back to normalcy. One was Kohl patiently holding me as I gibbered, and telling me over and over that it was probably just high blood pressure rather than a return of the Pseudotumor. (That may not sound comforting, but, believe me, it’s preferable.) The second thing that soothed my jangled nerves was crocheting.

For those of you whose interest in this post just plummeted, let me explain. There is a power in manually creating something. There is a magic in watching something you dreamed of take shape in reality. There is a beauty in letting the textures and colors play over your senses like a warm breath. There is a relief in having something in my life which I can control.

I’m working on a Mohawk hat for a little boy right now, along with a luscious, thick, cream colored afghan to go on our bed. As I worked on them this week, as I let the yarn rub against my fingers and watched my projects come to life row by row, I felt so much peace. In my life right now, inside my own body, there are processes of destruction taking place. This often leaves me feeling broken and bereft. The process of creation that I enact when I crochet balances me. I am powerful and magical and beautiful when I am crocheting.

May I suggest, then, to those of you facing your own personal darknesses, that you find something that fills you up, some part of your world that you can create. I have found it most effective when it is something I have to use my actual hands to do, like cooking or gardening. For you, it may be working on cars, or rebinding books, or painting furniture. It might be building model planes, braiding someone’s hair, or organizing a closet. When you find what it is, use it wisely as an outlet and a refuge, but not as an escape. There is solace in creation, and it is one of the most positive things you can do for yourself.

It really helps with gibbering, too.

Getting Started

It’s time to begin. I’ve put it off, but I can’t hold out any longer. This is where it all starts.

I created this blog in November, and I had great plans to start posting about what I was feeling as I looked ahead to the time when I would start dialysis for the third time. I even began writing a post, but I stopped in the middle of it and moved on to other projects. I kept telling myself, “It’s almost Christmas, and I have so much to do!” or “I think, all things considered, it’s a better use of my time to take a nap,” or even, “What on earth do people want with another blog to read?!”

On New Year’s Eve I finally realized the truth. We were down in Arizona, visiting family, and everyone was enjoying themselves, shouting out Happy New Year, setting off fireworks, excited for 2012, except me. All I could see ahead of me was the looming gray wall of another bout of dialysis.

For those of you who don’t know, dialysis is a process in which machines clean the blood of someone whose kidneys can’t do the job. It isn’t fun. In fact, it is often soul crushing. This will be my third time on dialysis. My original kidneys failed when I was a senior in high school. After three years of dialysis, I received a cadaver transplant. Five years later, my disease attacked my kidneys again, and I returned to dialysis. This time I was able to get a transplant only a year afterwards, thanks to my wonderful brother-in-law, Mitchell, who donated a kidney to me. Five years after that, guess who came knocking on my metaphysical door? That’s right: IGA Nephropathy and his good pal, Dialysis.

This is what I was facing on New Year’s Eve. My doctor had allowed me to put off the inevitable until after the holidays, but I knew that as soon as I returned to Salt Lake, the process would begin. I was so full of dread that night that I sat inside and cried on Kohl’s shoulder while everyone else was shooting off fireworks, and I LOVE fireworks. I hadn’t wanted to think about it before; I hadn’t wanted to write about it; I hadn’t wanted to accept that this shadow was back in my life.

Here’s the thing though: shadow and light together create beauty. When I was a freshman in college, part of my routine was a dialysis exchange in the middle of the day. I would sit in my parents’ living room and look out their big picture window, luxuriating in the sun like a cat, because dialysis makes me so cold. My mom had planted a beautiful tree in the courtyard, with slender branches covered in tiny, dancing leaves, and I was fascinated by the patterns the tree would make on the sidewalk beneath it. I used to watch it for the entire hour-long process, and eventually I started calling the shadowy, intricate patterns on the cement shadowlace.

My life has become synonymous with, and informed by, shadowlace. I am surrounded by beauty, and love, and delight, and I have learned to recognize these things clearly because of the dark patches. Whoever I am, and whatever I am becoming, it is happening because I have been in the shadows, and I am ready to write about it now.

I am going to plug writing a blog post into my weekly schedule, so, for those who are interested, I hope I have enough of interest to say. Kohl told me that I need to let more people in, to use this experience as a way to reach out and help others, so here come the shadow and the light of my life.