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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Realization and Grieving

I have been struggling to know what to write about this week; so much has happened that I keep finding myself unsure of how to approach such a tender subject.

Last Wednesday, Kohl’s dad passed away unexpectedly. I found myself suddenly switching roles with Kohl, as I tried to take care of him while he navigated territory that I knew nothing about. I had no idea what I could say or do that might help him, so I tried to say as little as possible and just be there with him and for him as much as I could. Now, a week after the funeral, I’m finding myself with several disparate thoughts all jostling around in my head, and I’ve decided to just let them fall out onto the page and hope someone finds them helpful.

Firstly, I need to express my gratitude for Kohl’s father. He was a genial, warm hearted man who loved music, technology, and sweets. He also struggled with health problems for most of his life. I think part of the reason Kohl is so patient with me as I go through my own struggles, is because he grew up seeing his mom take care of his dad. That patience and knowledge is only a small portion of the legacy that David passed to his children, but it has affected my life immensely.

Secondly, I have been putting a lot of thought into how we all experience such different trials. As I sit helplessly among my in-laws, wishing I could comfort them, but unsure of what to say or do, I have realized that what I have experienced has given me the ability to recognize and feel true compassion for others’ suffering, but it has not provided me with a true understanding of their pain. We are all surrounded by people with vastly different hardships than our own, and I have two very strong beliefs about that.

The first is that no one has it any tougher than anyone else, not really. We are fundamentally unable to feel exactly what anyone else feels, so we have no way to know how hard any one trial is for another person. What would be difficult for one person may not be very hard for another to deal with; likewise, what may be a simple hurdle for one individual may feel completely insurmountable to me. For instance, as lame as having a kidney disease is, and as frustrated as I get sometimes, it is a physical ailment, and I am not afraid of physical problems. My will has always been stronger than my pain. The most difficult thing I deal with, my secret trauma that rips me into shreds inside, is my inability to have children. It’s not as obvious as my kidney problems; in fact, no one meeting me would even know that it is an issue, but the aching pain of that wound makes my organ failure feel like a small thorn in my foot. One of my favorite sayings is, “Be kinder than necessary; everyone you meet is fighting some kind of battle.” We should never make the mistake of thinking we are better or worse off than someone else; life is going to test and teach all of us, and we don’t have the right or the responsibility to compare hardships.

The second thing I believe strongly about trials is that there is recompense attached to suffering, and I am not only talking about the blessings that various beliefs promise to those who are patient. There are blessings we gain in this life that are the direct results of what we go through. Our burdens give us the ability to feel sympathy, and sometimes even empathy, for others who hurt. As we struggle, we begin to see through different eyes. Sorrow provides wisdom, grief teaches compassion, and pain clarifies how to be truly grateful. This last week of heartache, I realized again that although I can’t always understand what the person next to me is feeling, I have learned enough to know that offering my unconditional support is often sufficient. I am here for whenever Kohl needs me, and because I am more familiar with sorrow, grief, and pain than I was, I will be able to recognize when that is. This is one of the ways that shadow enriches the light, and I am grateful for the eyes I have to see that.

I’m still feeling jumbled by this experience, and I know there are lessons I haven’t sifted out yet, but I hope I’ve made some sense. What are your thoughts about grief or trials? I would like to know how other people deal with helping loved ones through painful times. Does everyone feel as inadequate as I do?