I hate the illness. I hate everything about it. How it crept in. How it weakens the mind. How it stays and stays no matter what. How it cannot be predicted from day to day. How it undoes so much of what a relationship needs to flourish.
I hate the illness. I do not hate the person with the illness. Maybe this is like hating the sin but not the sinner.
I try to keep it all separate in my mind. Compartmentalize it. Don't personalize it. Remember that illness causes personality changes. Illness causes losses in memory and language. The person is not the illness.
The illness is fraught with fatigue. Exhaustion. Pain. It hurts to be touched. Often the pain shows silently through facial expressions, nay, contortions. Eyes faded and weary. Hands trembling. Feet tripping.
I am a bad spouse, expressing anger over things not anyone's fault but the illness. Feeling frustration and sadness about my own loneliness and the lack of human interaction. Guilt for all of it.
Illness causes loneliness for each of us. I try hard to remember that the illness has rejected me physically, not the person. It is the illness that took intimacy away, along with memory and conversation. It is the illness that separates us now.
Years of illness don't make it easier, I've found. Instead, it accumulates and compounds. The dread. The fear. The worry. The frustration. The loneliness. I have fewer internal emotional resources from which to draw to resist these feelings. I see this accumulation and my inability to resist it as weaknesses and faults of mine. I should 'do illness' better. I should know by now: this is what illness brings to a relationship. None of this surprises me anymore, it is just ongoing. I should know.
Sometimes I think we have a deep freezer of guilt in this house that we each draw upon each day. Guilt withdrawn for one of us for having the illness. Guilt for the other for failing to cope with it.
I am a terrible spouse.
Please don't feel the need to comment and tell me that I am not a terrible spouse. In general, I am probably not. But, in this room, at this time, in this moment, I am. I can own that.
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Deargdruchtach
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This is one fine paragraph:
Sometimes I think we have a deep freezer of guilt in this house that we each draw upon each day. Guilt withdrawn for one of us for having the illness. Guilt for the other for failing to cope with it.
"Please don't feel the need to comment and tell me I am not a terrible spouse. In general. I am probably not. But, in this room, at this time, in this moment, I am. I can own it."
~
I read this over and over. I will not comment.
~
- Wendell Berry comes to my thoughts. This beautiful thought.
"The care of the Earth is our most ancient and most worthy, and after all our most pleasing responsibility. To cherish what remains of it and foster its renewal is out only hope." Please note, it's not shared on the honest expression in your New Post. I hope you sense I/other folk ... are sensitive to your hurt. Thanks. I tried to hush and not comment.
Dorinda, I appreciate your words about the writing. I admire your skill and talent very much, so your thoughts mean much to me.
Eva, thank you but please, please don't feel shame. One's loneliness cannot be ranked against another's. I remember your post a few months back about your isolation in your new(ish) town. That's a real feeling and you deserve compassion for it as much as anyone. Thank you for the kind thoughts.
Arthur, sweet Arthur. Thank you. I adore Wendell Berry, too. Maybe I'll pull out a poetry anthology tonight. Poetry helps, and certainly never hurts.
And, MTN, thanks. I saw the rating.
I appreciate your kind words very much.
Anyway...I understand how you could get your readers mixed-up. Your first post attracted a lot of attention because so many people were able to relate to your story. I was one of those. I am still. But I feel sorrier for you than I do for myself, and truly hope things will get much better for you, ASAP!
You are only human. You have hope just like everyone else in your position. Nobody "shoud "do illness" better or "know by now" - you have to live in hope that tomorrow could bring something better, something new, something fresher and stronger. That's human nature.
You are one person taking on an enormous task and you can only carry so much. Be only as strong as you are because that's all you can be, and that's all you can expect yourself to be.
I'm proud of you for owning how you feel and for being brave enough to share it.
I'm sending you love and strength.
the enourmous burden
Thanks for clarifying for me. I'll not do that again!
Thank you for the comment. I sent you a PM.
T.S., I thought you might get it. I'm sorry that you do.
Kathy, thank you. I'm glad the writing was worthwhile to you. I strive for that.
I get it, the angst and the guilt of taking care of others, needing to speak of the unspeakable resentment and yet, (I get that name too) not wanting to break or harm the fragile ties that bind.
This gave me some encouragement when I was in your position. Be well.
Cartouche, thank you. I didn't know that about you. One more reason to appreciate you and your being here.
poetTess, I knew you would understand, too. Thank you for the supportive words.
Ohhhh, thanks, Ardee. I'm not sure if the link works, though. It took me back to this piece....
And Smithery, you're right. It does come in waves and bits and pieces. Certainly not predictable. Thanks for the kind words.
So rage away dear friend-- you deserve it... and we are lucky to read your prose along the way.
I am going to say right now that you are not a terrible spouse. Yes, you've made it clear I need not say it. But I NEED to tell you that you are no more a terrible spouse than I am. You are HUMAN. We give, we give, we give..... And honey, it's OK to ask, "What's left for me?" Because often, there is nothing left for us at the end of the day, is there?
So sometimes we need to hunker in our dark corner where we try to sort through our own worth. Is it OK to feel worthless? Is it OK to feel worthwhile? And how can one feel both of these at the same damn time? (OK, maybe this is just me...) As usual, this subject brings out so many exhausting thoughts, I have trouble putting them in a nice little package.
........Yes, the illness. It is the thief. I wish with all my heart that it never stole the intimacies of your life.
I'm here for you, dear girl.
Newsie, you're right. I remember when a friend said to me, "You're not sick. You're not sick." That statement actually surprised me. It's like I am, in a way, because of all of the adjustments that are necessary. Thanks for the support.
Verbal, thank you. I appreciate you being here.
Eva, thank you. Thank you. That's my new motto: illness as a thief.
Your kind words feel good tonight. I hope you get some comfort tonight, too. xo
WHOSE illness? WHAT illness? this is not even fulfilling freshman 101 writing given that who,what,when,where,why are all left unanswered.
illness? not yours, I assume, but you cannot even come to grips with saying, HIS illness. why do you feel guilty about your reaction to someone ELSES illness? you seem to be overempathetic. imho this is a psychological disorder just as narcisism is. actually you seem to flip between two extremes.. narcissistic in your last [amazing, debut] post, overempathetic and despairing in this one.
Thank you for reading and commenting, deepcleav. I love how you read this piece. Thanks, again.
No fun to relate to this one. I wish much better for you and yours
Rated
Buffy - thank you. I remember trying so hard to read your "Sickness and Health" piece a while back. I think it took me three tries. I am glad there are people like you in the world and I wish I could be more like you.
Thanks, you two, for reading and commenting.
We are the ones who are most unforgiving of our own flaws. Maybe if we practiced the understanding and forgiveness toward our own selves that we grant as a matter of course to others, we could spend more of our time happy instead of overcome with guilt. Is that possible? I don't know.
Cindy, I've been thinking about your comment all week and I thank you for it. I do not know where the balance lies among forgiveness, understanding, and guilt. That is the mystery of life, perhaps.
And Jasmine, welcome to OS. Your words are so kind and caring. I do tend to speak my worries, often to the chagrin of others. Still looking for that balance, too.