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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The Bitter and The Sweet

It’s been a long time.

I have tried to start this post so many times, but how can a handful of paragraphs accurately depict the miracles and upheavals, the pure, deep joy and the heart faltering terror, that became an everyday part of our lives so suddenly? They can’t, and so I’m going to have to just try to give you a patchy description of the last few months.

In February, after twelve years of (sometimes agonizing) waiting, Kohl and I were able to start the process to adopt a baby girl. It was a miracle, pure and simple. I’ve always believed in miracles, but I don’t really expect them to happen to me. I tend to view them more as faith affirming stories  to help bolster my strength. This time, in the middle of one of the most desperate times of my life, emotionally speaking, the miracle happened to me. With me on dialysis and no discernible way to move forward with our adoption wishes, we were contacted by a birth mother who knows my sister-in-law. I talked to her over the phone, and by the end of the conversation, she told me she wanted to place the baby with us.

I have seldom spoken with someone whom I admired as much as I admire this woman. Her entire desire was for the happiness and welfare of the little soul she was bringing into the world. She knew exactly how hard it was going to be for her, but she was adamant about doing what she felt was right, and she has blessed so many lives through her actions. I truly love her, and my daughter will grow up hearing the story of how her angel brought her to our family.

Two weeks after that first conversation, Kohl and I were flying down to Arizona to pick up our little girl. (Kohl likes to call her Two Weeks’ Notice.) I have never felt so exalted or so terrified. I vacillated between holding her soft head to my cheek while my heart overflowed with the only perfect happiness I have ever known, and a paralyzing panic when I stopped to think about the awesome and awful consequence of being responsible for another being’s life. I had a lot of conversations with my mom and my sister, and thankfully they had felt the same way and reassured me that I would get to a point at which caring for this precious little bundle of bliss would feel doable. They were right.

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Our dark-eyed Little Bird is the delight of our lives. Kohl is especially enamored, and I often have to chase him away so that he gets his projects done. He gets more time with her than many dads do, though, because he takes care of her while I’m at dialysis. Three times a week he gets four hours of pure daddy-daughter time, and sometimes more when I come home feeling especially weak. For the most part though, caring for our girl is easier than we thought it would be. She is a happy, sweet natured baby, and I can spend time with her lying next to her on the bed just as well as if I were jumping around with her.

However, I long for the day when I don’t have to leave her for hours at a time and come back weak and tired. I dream about getting a transplant and doing all the things with her that I am unable to do now, like swimming, long bike rides, milkshakes and fries, and, most of all, knowing that I will be there whenever she needs me.

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Unfortunately, there is some doubt about whether I can get a transplant at all. With all the transfusions I’ve had to have, my antibodies are very high. I only have a chance of matching about 2% of the population. My brother is being tested, and he has a better chance than pretty much anyone of being a match, but there is also the possibility that he won’t be compatible and that, and this is my nightmare, I will have to spend the rest of my life on hemodialysis. There are not many things that frighten me, but the thought of never being able to escape the prison that dialysis makes my body skewers my heart with icy horror. I’m honestly not sure I could do it.

This is the point, then, at which I currently find myself; balanced between the hope and light that my daughter has brought to my life and the dark, lonely despair of sickness without relief. Please, if you feel so inclined, send your thoughts or prayers my way. I know that they help.

And maybe, if it’s my path, I’ll receive another miracle.

Burning

Every night my body burns with fevers, and every night I slowly bring my temperature down while trying to find a comfortable position. Every day I struggle to find the energy to make myself eat, trying to replace my overly depleted resources. Every other day I go in to a dialysis center and the nurses pull my blood out, a cup at a time, in order to clean it. My body knows it is unnatural, and it’s always slightly traumatized and weakened when the three to four hour treatment is over. I shuffle to my car, counting my steps so that I have something to focus on, and I go home and sleep for a few hours, trying so desperately to give my body some of the strength that it has been lacking so long. Every day passes as though I were in a dream; nothing matters but getting through that day, mere survival.

I’m sorry that I haven’t written. My peritoneal dialysis wasn’t working: the abdomen just had too much scar tissue, and my body was so full of toxins that my heart started having problems. They put me in the hospital and told me I would never do peritoneal again. That same day they took out the peritoneal catheter and put a hemodialysis catheter in my jugular vein. It’s been working on my toxins, but my body doesn’t tolerate it very well. It’s my nightmare, actually. I feel barely alive.

Hooked up to the hemodialysis machine

In part, that is because I don’t feel like myself. I’m slow, physically and mentally, and I’m so tired. I am very blessed with people who love me and want to help me, but they cannot comprehend, they are not required or expected to understand, the utter loneliness of a dying body. Every twinge and pain of my body reverberates loudly throughout me, while those outside, those with glowing health and vitality, sound muffled to me. They speak too loudly and move too quickly. Some of them are frightened of me, of the pain they can see in my face. Some of them treat me like a child, trying to fix my life for me. I think most of them are uncomfortable around me; they don’t really understand why I’ve changed and how they should react to that change. All I want to do is find someplace to rest.

The thing is, the thing that you can be dead sure about, is that I am strong. I am strong enough, and even a little bit stronger, to get through this. It isn’t always pretty; I don’t always look happy, I can’t always summon up enough energy to make everyone feel like I’m just the same as always, but I am unvanquished. My will burns stronger than my fevers, and though right now I am trapped in this crumpling, gasping form, when this physical gauntlet is run, I will shine incandescent.

The upper piece of gauze is where the catheter goes into my jugular. The lower piece is where the catheter emerges from the skin.

My brother wants to give me a kidney, so they should start testing him soon. It will probably take a couple of months. In the meantime, I will burn, and sleep, and count my steps, because sometimes life is just gritting your teeth and making it from one place you can sit down to another. And I am strong enough for that.