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.
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.
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.
I want you to know that I have admired you as long as I have known you. You have always been amazing, and you continue to amaze and inspire me. Thank-you for sharing your struggles with us. We love and pray for you!
Thank you for your prayers; I definitely feel the power of all those who pray and think about me. I appreciate, and am astounded by, how many people truly care about me and want the best for me.
We love you. Tons. And Kohl a little bit too.
I know, and I’m grateful. It’s nice to know I have people who are there for me so close.
I once read a philosophical analogy about how the only being who create light are the ones who burn. All others are simply reflecting the light.
That is a beautiful way to look at it, Angus. Thank you for bringing that to my attention. I appreciate, more than you may know, our friendship and the support you have always given me. Thanks.
I wish I could write something to adequately explain my thoughts and feelings about you and this post the way you do in this post. I started crying when I read the first paragraph and I can’t stop. You are admirably strong. I love you very much and I am so sad that you have to go through all of this.
I don’t like going through this, and there is definitely a part of me that longs to be done with all of it. On the other hand, I can see how I am undeniably a better person because of the lessons I’ve learned from these experiences. I don’t know how compassionate or patient I would be had I never had my kidney disease; I am not naturally inclined towards either of those qualities. Knowing now how I have been able to develop these characteristics, I wouldn’t give up my pain; in fact, although I shudder a little bit as I say this, I don’t want to give up the pain that is still in my future. It scares me, but it also makes me better, and I truly believe that is the entire reason for this life. I am wasting my time if I am not making myself into the person I plan on being. So, don’t cry, Heather; it sucks mud, but it is worth it, eventually.
You are stronger than anyone I know and am inspiration for all of us!!! We love you!!!!
I love you guys, too! I’m glad this blog is helping some people, because I am still pretty dang uncomfortable with spilling out all of this self-reflective writing; it feels like hubris. I do want to focus more on helping others, though, so I’ll keep writing as long as I keep getting messages from people who tell me it does something for them.
We love you!!!
I also love you guys! My family is such a bright spot in my life. Your support and constant encouragement make a bigger difference than I think any of you know.
When I think my life is hard, I will think again!
Thank you for sharing. You are an inspiration to many! You many contact me on my email if you have the strength. I have a story to share with you too!
Thank you for your kind words. I’ve realized now that everyone’s life is hard in some way, and pretty much everyone is dealing with something that is beyond my ability. It does help to know that others care, though.
Hi. I just came across your blog and your words made me cry. But at the same time I was comforted… Comforted to know that I am not the only one going through this… I also have kidney disease and started my journey with dialysis just 2 months ago. It was a very scary time for me and I still struggle from time to time with the fact that I am really going through this… Sometimes i think it’s a nightmare that I will wake up from… But it is my reality and I try to push along with positivity…
I think you are amazing. To be able to share everything that you are going through with the world is so courageous.
You will be in my thoughts and in my prayers.
Thank you. It is a hard adjustment when you first start, not only physically but emotionally as well. I hope you are doing well. Please let me know if you want to talk or have any questions. Maybe the worst part of disease is feeling cut off from the majority of the world, who are healthy. We sick ones have to stick together.