504158EF91EAA8A27A35DB2FC810D5BC

The Humiliation of Fatigue

One of the neighbors around our central courtyard made some remarks the other day that caused me to feel terribly helpless and humiliated. He mentioned how he had heard how active I used to be, how well I kept my house and garden, how much work I did for the marginalized and weaker people in the community. “What happened,” he asked. “It’s not good for you to be so inactive. Just do a little at a time and you’ll get your strength back.”

My neighbor knows I have terminal cancer. He knows that my world has become very small. He knows how sick I am… but he doesn’t get it. He is one of the many people who see cancer fatigue but register it as laziness or depression or “playing the cancer card”.

Don’t they know how much I want to be active again?

Today I changed the linens on my bed. It took an hour and I had to take a rest before doing the last pillow because I was not only exhausted, but out of breath. This is not fun, people. I love a clean house, a spotlessly clean house. I can’t have it now because I have to depend on other people to do the heavy work for me – and most of it counts as heavy work for me now. For the pittance I can afford to pay, I cannot require that they clean to my standards, just to “regular clean house” standards.

Not only can I not expect to be completely pain free for the rest of my life in the physical sense, I can expect to have a certain degree of emotional pain, too. I’ve written at length about how I deal with feelings that I don’t like. It works. But sometimes I wish with every fiber of my being that I didn’t have to deal with all this.

“Why me,” cried the woman, in honest desperation.

“Why not,” came the reply.

I do my best not to spend my limited energy reserves on nonsense, not to waste time howling at the moon–except when a good old-fashioned howl is what I need to free myself so I can get up and keep going. Today is a howling at the moon kind of day.

And so, dear friend across the courtyard, this is what I want you to know. Fatigue is real, even though you cannot see its stigmata on my skin. I am frustrated enough that I cannot do everything I’d like to do, and humiliated enough at the state of my house and garden without you pointing it out to me. I am doing everything I can possibly do, and probably a little bit more than that.

Moreover, I do not have to justify myself to you any more than you have to explain  yourself to me. I know that you mean well and would never have intentionally hurt my feelings. But please just keep your mouth shut and your suggestions to yourself. Give thanks to God that you don’t know or completely understand what I am experiencing, and continue to be the friendly neighbor you have always been, respecting our mutual boundaries.

Thank you.

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8 Responses

  1. C

    This was very difficult for you to write.

    Yet, I know that write, you must.

    Stay strong, sweet lady.

    Because I know that you are, in all the ways that really count.

    G

  2. Paula says:

    Dear Knot, thank you so much for sharing this feeling. You know they say, “Kids say the darnedest things.” Well, people say the most hurtful things not even meaning to. The older I get and the more suffering I see, the more compassionate I become. I see this in lots of conditions such as obesity, addiction, psychiatric conditions, patients with chronic pain. Others judge , but I think you shouldn’t judge until you’ve walked a few miles in THEIR shoes. Then you can offer some advice. You can just chalk it up to their lack of knowledge. ( Or you could just say, “Kiss my ass!”)

    • Knot Telling says:

      Paula! *giggle* (I was just listening to a Blake Shelton album today, including the song “Kiss My Country Ass”.)

      I know that people don’t mean to hurt, but sometimes it does hurt very deeply.

  3. Tim says:

    What I reckon is that this was subconscious blindness to the reality of your situation on the part of your neighbour. I think he knows how things are for you, and that the solution is not in “trying harder”. I think he’s terribly scared that someone with the strength that he’s seen in you can be reigned in by this disease and prefers – albeit subconsciously – to believe that there is some difference will-power could possibly make to this situation because he’s terrified at the thought that blind bad luck could strike a person down, and therefore could potentially strike him down too.

    Of course my pop-analysis doesn’t diminish the hurt and humiliation you felt, and I’m so sorry for that. But if I’m on the right track, it wasn’t pure unthinkingness on his part but rather terror at the situation which was the culprit and so another blow from the cancer. I don’t know therefore if it helps to think of that as another symptom of the cancer rather than being let down by a friend, but I hope so.

    I hope I’m not being presumptuous by thinking out-loud like this. I am aware that I’m talking from the happy position of not having this weight personally.

    • Knot Telling says:

      Tim, no presumption at all!

      Looking at it from his point of view, I agree with you. (There’s a post or two about that on the old site.) You are a very sweet, kind person. Thank you.

  4. Hello Knot Telling, I have read a few of your posts and was really stirred by your honesty. My husband was diagnosed with stage IV oral cancer in September of 2013 and just finished his radiation treatments last week and I know he has gained self confidence from facing life and death straight in the face.

    I admire your strength in character in what ever it may be. Be it dealing with so many levels of pain or facing the day. Thank you for being such a beautiful, inspiring and generous person.

    Sophie AKA ScintillaRay

    • Knot Telling says:

      Thank you for your kind words, Sophie. I’m terribly sorry to hear about your husband. I wish both of you strength and patience and love.

      Thank you for reading and commenting.

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