guilt and ability

I posted this yesterday on my Facebook. I decided to share again. But this time, on my blog so I won’t lose it. I only intended to write that I was enjoying my cup of coffee. 
So, am slowly waking up. Some days are so hard. I try not to vocalize it because then it’s hard for me to ignore and push past. I have such guilt inside over the things I don’t get done. I try and explain why to my kids. But it sounds like a broken record… I’m just as tired of saying it as they are of hearing it. I know they know. They intellectually understand.
My eldest, I think, has the hardest time with me limits. He remembers what it was like before… before all the sickness took root. Before the cancer, before the chemo and radiation, before I became who I am today. Before the chronic pain that can make the simple act of sitting up and breathing more excruciating than anything I’ve ever experienced–yes, even more painful that going head first through the windshield during a car accident.
I have such guilt when I ask for help. I ask for a cup of coffee… And I know it’s a simple thing but in the moment, I hurt too much to even stand up…never mind move. I should be able. I tell that to myself. I was able an hour ago. Why not now?
And the guilt I feel when I ask for bigger things.. Like unloading the dishwasher, cooking, laundry.. It’s immense. That was my job. Ever since I can remember, I have wanted to be a mom…a stay at home mom, if financially able…never wondered what if I’m not physically able. I should be able is what I tell myself.
And it’s not like it’s a fixed differently abled thing either. If I lacked a right arm…people could see why I could not shake their hand in the way of our customs. And it would be the same now as it is two hours from now… I still wouldn’t be able to shake your hand. If I could predict what I was unable to do at any given time…I think that might be better. Because then I could plan. Then I can make accommodation for it. But if it changes hour by hour or minute by minute, how do you? How does one plan for that? To stand up, intent on making supper for her kids, only to sink back down and try to hide the grimace of pain?
How does one sit there, realizing that here is another night the child will come out about 5 p.m. and ask “Aren’t you going to make supper?” How does one not feel so much guilt.. So much that she lashes out with a “Don’t rush me!” Not because the child asked for supper but because she’s scared that tonight the child will have to cook for himself? And feel that guilt. How can one plan for this when one doesn’t know when she will be able and when she won’t.
Make an appointment for a month from now; wake up and unable to go. The doctor only sees a flaky person costing them a missed appointment.. And so they drop me as a patient.
I am sorry that I am not the mother, the woman, the sister, the daughter, that I feel I was meant to be. I fight so hard not to be a burden to anyone… Do they see? Do they really understand? Was that an eye roll? Does he think I’m just being lazy? Or that I’m more into my show on T.V.?
Words really can’t express these feelings and they never truly go away. Words can’t really express the enormity of these feelings. Words cannot express how broken I truly feel. But I feel compelled to try and explain myself.
I fight with others when I perceive them trying to take away from me the chance to try for myself. Don’t assume I can’t unless I say I can’t. It must be confusing for them, as it is for me. Yesterday I wanted help navigating through life, needed an errand ran, an onion chopped. Today, though, I can do it! Don’t hover! Don’t walk behind me like I’m a toddler, learning how to walk, with your arms out, ready to catch me if I fall. Let me fall, darn it! Just be there to help pick me back up.
How can I make others understand what I don’t understand myself? I feel useless, unhelpful, ungrateful, unwanted, just…. Unable.
And then, I’m reminded. I’m reminded that it is because I feel that I am alive. I have a heart and it beats. I’ve been put here for a reason. Not sure what but don’t really need to know right now. And so while I may not live up to my expectations every day, I keep going. I keep trying and I keep pushing. The more I do for myself, the more I can do. Finding relief in laughter, in my sons, my sister, my family… God has blessed me. I have much to be grateful for, really. I still have a chance to live…and to love. And love….is the greatest of all. Isn’t it?
Maybe one day I can accept this new normal. Maybe one day I can even forgive myself and love myself, as I am today, right now, five minutes from now, tomorrow… Wherever I’m at on the able scale, maybe one day.
But just not today. Not yet. So, I’m going to take a sip of this coffee and be thankful I made the pot and cup for myself. That at this moment, as I finish these thoughts, all is possible. Including love of self. Love of me.

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