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.
SHADOWLACE 
Chris, thank you for your honesty. No, others will never understand but this helps me get a little closer, see it a little better, a little more clearly, get a glimpse into how it must feel. Thank you for giving so much to others, for being so loving, for keeping on going forward when to say it is hard is an understatement. Thank you.
Thank you for your kind words. Most of the time I try to keep these kinds of feelings to myself, but sometimes, and especially in this space, honesty is a relief. And I hope that maybe my honesty about something that is not very pretty will help someone else feel that they are not alone either.
My beautiful daughter, this brings tears to my eyes and sorrow to my heart. I am so sad for the pain and heartache you are going through. Even though I can’t understand what it is to go through your trial, I know how it feels to have a struggle that feels never ending and that I can’t control or change. I feel so much empathy for your heavy burden. I had so many impressions and feelings flood my mind as I read your blog, and I want to talk to you when you feel like talking!
Thank you , Mom. I know it’s hard for all my support system to be going through this as well. That’s actually one of the reasons I try not to dwell on the negative side of living with disease; I don’t want to make things harder for those who care for me but are unable to change my circumstances. I’m not the only one who feels helpless. However, knowing that I’m loved and having family and friends who are unendingly by my side lift my heart so much.
I don’t know if it’s the list bit helpful, but you’re reminding me a bit of this post I read back in January, and how it distinguishes between mourning with those who mourn and comforting those in need of comfort. http://segullah.org/slice-of-life/when-life-is-burning-down/ I think part of what you are saying is that you need people to mourn with you rather than comfort you, and we are not culturally very literate at mourning. I am so profoundly sorry that it is so heavy and hard on so many levels. I hope you feel like this is a safe place for you, where you needn’t worry to much about maintaining silly social graces about positivity in the face of merciless voids.
That is a really interesting way to think about it. I have never made that distinction before, but I think that is exactly what I am saying. It’s a good lesson for me too; I am not always sensitive enough to recognize when someone needs comforting or commiserating. It’s one more of the many lessons I’m learning.
This blog does feel like a safe place for me, maybe one of the only ones. Perhaps because I am writing alone, not worried about the possibly negative instant feedback, or maybe because I think of it as an Enter At Your Own Risk situation (“Only wade into these waters if you are prepared to deal with emotional outbursts and intricately detailed descriptions of life with no kidneys”). Whatever the reason, I feel a lot better after I let it spill out onto the page.
Of course, then I feel guilty that I’ve made everyone who reads it feel worse.
I wanted to mention how much I enjoy your writing as well. I was just telling Kohl the other day that I think you and I are more similar than I had realized, and I like hearing your slant on things. Thank you for taking the time to offer it to me here.
*least
and *too
(learning how to edit before hitting publish….)
As excited as I was to see an update on your blog, I am so sorry to hear how hard things are for you. Please feel free to let your emotions out. It’s hard to keep it all in.
I just keep thinking back to the overwhelming joy I felt when I first saw the picture of you holding your newborn Aven. I will continue to pray for you to be able to enjoy your little bird as much as possible.
Thank you, Angus! One of the greatest blessings of my life is having so many loved ones who share in my joys and sorrows, and you are certainly counted in that number. I appreciate your prayers more than I can really explain, but it’s always a warm comfort at the back of my mind. Thank you.
Chris, I wish I lived next door so I could hold you and listen to you. I could chase “little bird”‘, Aven, too. I read the description of your unending sorrowful ordeal and wonder why this happened to one of God’s precious, loving, kind, brave daughters. Are you the thread that ties the family lovingly together? You have endured mental and physical pain for half of your life smiling and laughing as much as possible. You are an inspiration to everyone. I would take away all your pain, Kohl’s, your Mom’s, Dad’s and heal the broken hearts if I could. I continue to pray for a miracle. I love you.
Thank you, Grandma. I think I understand why I have this disease, I just wish I could learn the lessons I’m supposed to so that I could be done with it! I have a suspicion, though, that one of the lessons is how to patiently endure, so I may be here awhile.
I really appreciate the unending support from you and all our family. As lonely as I sometimes feel, I know that I am not alone.
You’re a beautiful inspiration to everyone, Chris~~~we love you. Thank you so much for sharing your thoughts and feelings.