Why do I identify as a caregiver instead of parent of special needs child, or parent of medically complex child or other parental designation? Because I am not just a parent. That would imply an overview of the role I play but it does not describe me in an authentic way. I’m a revolutionary, a risk taker, a troublemaker, ARD conqueror, inquisitor of doctors, purveyor of alternative remedies and wise woman who sees through the bullshit in an instant. I am these things. These things are me.
Trigger warning: Descriptions of descent into despair and coming back to follow.
Below you will find a description of despair and how I felt and processed despair. I share this with you because as a long-time caregiver, I can fall into what I call zombie affect, flat affect where I get numb and emotionless.
It’s caused by continual stress and by necessity pushing through. As a caregiver, we do what we must but it is important when you can, in ways that work for you, to actually feel the feelings. At first, I had to make myself feel because I had gotten so numb that I didn’t even know how I felt. I’ve learned that when I feel the feelings that I’m having, it somehow brings me back to life. Remember the feeling after a good cry? Ah, that’s what I’m talking about.
I’m posting this here to share with you, hopefully, as encouragement and if you aren’t ready to do it yourself, maybe you can do it vicariously through me, ya know, like we do with movies.
Below, I have posted a mp3 file of this post, it contains the gist but isn’t a word for word reading. I thought I would do this because, honestly, sometimes when I sit to read, I fall asleep.
Power of Paradox
I live in the depths of the continual lessons that I am forced to embrace in the moment. I have the battle scars and echoes ringing in my head from many midnights of heart howling crying out to the moon from the depths of my being. Demanding of the universe, my creator, and any who could stand my wretched presence, to understand the meaning of the disgustingly evil things called seizures, autism, cancer, too many horrid monsters to name. I stand and scream in their face…what is your purpose, why are you here, why me and those that I love? What is your true name, what is your lesson for me, for us? To my heartbreak and shame, I have learned that I may never understand why and as much as I try, I cannot banish these monsters from my life or the life of those that I love.
For the wise woman, bloody knuckled crusty old hag within me has taught me that if I do not honor and release those emotions, they will rob me of my power. So I must rely on the paradox as my source of power. You see, what I’m talking about is the tension that is living in this time in this place in this pitiful and unlucky and if I hear one more time, “God wouldn’t give you more than you can bear” words uttered.
No, these are the monsters that I must dance with, that I
must forever work within the limits of, and not against.
I must integrate the heartache, pain that they bring into my life. If I want to give care to the one I love, I will not fight against, hold onto, deny, or minimize the feelings and emotions emanating from them but I will integrate the lessons taught by these gruesome teachers.
Oh, how I wish that it were not the case but old hag that I am, I have finally learned that like my ancestors before me, I must learn to dance with these horrid beasts and meet their ferocious roar with the same that I am met with; but oh child, I am not alone. I call upon my creator and the cosmos, I draw upon the energy of the earth beneath my feet and summon from within myself what is needed to meet the moment. Yes, this is the most potent moment of power.
So, I will not deplete myself and my energy resources working against the truth of my situation.
I return with the same ferocious force that these monsters hurl at me. By bending these forces and using their own momentum to hurl back at them, through forceful release, I am I able to give care to my doodlebug without depleting my own resources. What does this look like, you ask? I sit with them, these thoughts of fear. I acknowledge them, these sharp stinging pains in my heart, then I sit with them, feel them, honoring them until finally, I can release them. Then, I was the dishes.
I smile a knowing and sly grin because I know it’s coming.
The power that comes the moment that I am the lucky beneficiary of the ‘best hug ever’ that epic cataclysmic moment my son looks at me and smiles a whole-body smile, he gives me the ‘best hug ever’, you see his hugs are magic. Each one is better than the last.
If only I can be watchful as the clever fox and catch that moment and sit with it and cherish it, I have experienced the power of my paradox. The present moment. The present moment free from the heaviness of the past and unhindered by fears of the future, there sweet one is the power, the power of paradox. Navigating the tension between moments and having the wisdom to gulp every drop of love and joy as it runs down into my heart, that is my power in my paradox.
I savor these moments and I feel them with all my senses because it is here that I am slayer, I am victor, I am caregiver of my most precious one. Here, I have the ability transform disability, disease, and grief into power, this is the power of paradox. The potent power of the moment. You see, it is true, to the same measure of your despair is met by the measure of your joy and bliss, if you are brave enough to look for it and to heathen enough to grab it with all gusto and wise enough to be satiated when you find it, even if only for a moment. It is there, it is there, it is there.
Be a collector of Power by keeping a list of your powerful paradox moments. The moments of joy that come along. The treasures and little moments of precious connection that is indescribable, write them down, and take them out and review and savor the power in them. Do this to build your resilience and keep it as a tool. When you review your journal you will begin to feel the power stirring in your heart, do it, take in the nourishment of your powerful caregiving moments.
They are there, they are there, they are there.
Do you see them? If you would like, share your power in the paradox moment in the comment section below. You are safe here.
experiences of a caregiver
I’m Lisa, a retired mom to Travis, my 30 yr. old son who is my best friend, greatest teacher, and the purest soul I know. I retired early, at the end of 2017 to come home and be with him because his health was becoming increasingly complex as was mine.
I have started this blog because I hope to offer support and resources for other caregivers. I am not a therapist, or a doctor and this blog is not a replacement for either. My hope is that this blog will be a source of nourishment, hope, and community for caregivers, whether you are caring for a loved one who is ill, at end of life, yourself if you have chronic illness, or anyone who finds this blog meaningful is welcome.
The idea for this started forming pretty soon after my retirement, the transition from working to being home all day was not what I expected. My son and I had to get used to being with each other all day and honestly, I was no Gidgett (his caregiver of 8 years). She had become part of our family and Travis had become part of hers. We both had withdrawals, I trusted her with the most valuable thing in the world, to me and in the end, she had become a valued confidant and fellow advocate. Alas, I was no Gidgett and Travis let me know he thought so too.
My identity suffered a huge shift, as the things that gave me a sense of success and accomplishment had changed. I no longer had my paycheck, clients, bonuses, or task list to judge a day well spent. Now, I was dealing with seizures, melt downs and falls. Success had become getting through a day without falling and hitting his head or having a melt-down.
As hard as it was, I knew I was doing what I needed to do by taking care of my boy. A few years prior, I had cared for my Aunt Betty, at the end of her life. She was my parental figure, the one who encouraged me, cried with me and the only person that I felt truly saw and loved me growing up. She raised me the best she could, it was my honor to take care of her, the best I could at her time of transitioning. Her passing was not easy and there are things that I wished I had done differently. Instead of all the worrying about groceries, changing sheets, cleaning house, and filling pill boxes, I wish I had more time listening to her stories, watching hallmark movies together, and laughing until we cried at her jokes. More time being present with her. Yes, that’s what led me to retire and walk away from all that I had worked for, to spend time with my little man. I am blessed to be in a position to do this and I think Aunt Betty is pleased.
As Travis and I got more into our groove and my health started improving and my reserves were building up, so was a desire to give to others. I wasn’t sure how, but I wanted a way to build community and be a resource to other caregivers without depleting my own, as the job of caregiving takes a toll on the mind, body and spirit. I decided that a blog to document my journey for myself and share my experiences and the things that I learn with others that have the desire to give care to their loved one, would fit the bill.
So, I pondered the idea and pondered some more. With all the pondering, I freaked myself out. The idea of being vulnerable in this public way is scary. Then one day I heard Caroline Clayborn on the podcast, Transforming Trauma, Episode 10, (a great episode) talk about caregivers being in a Zombie Apocalypse. Never had I heard such metaphor of my situation. It touched me and gave me the boost I needed to finally push through my fear and start this blog.
Although, I had never even considered Zombie Culture in movies and literature before, it was a perfect description of my way of being. This podcast gave form to what I had been pondering for so long because it gave me a metaphor that would help me communicate to other caregivers this message: I see you, I am you, and I thank you.
In the podcast Clayborn talks about how being a special needs parent is like being in a Zombie Apocalypse except your family, your loved one is the only one the zombies are after. Most people don’t realize that you are experiencing the zombie apocalypse because they aren’t affected and the world needs you to perform as normal, as if your loved one is not in any danger and as if you are not exhausted. Caregivers are expected to slay the zombies and have the cookies for the bake sale, says Clayborn.
In my job as a financial services account manager, I had a reputation for turning around angry clients. I experienced success such that it became a point of pride, that and other uninformed behaviors blew out my immune system and left me with chronic illness. Sure, I could deal with an angry unreasonable Financial Advisor, who really only needed someone to hear him out and hold space for the disconnect between what sales promised and what operations was capable of delivering. Such is the lament of every Account Manager! Still, I knew what real problems were, listening to an advisor complain and cuss me out was nothing when you know what real problems are, like watching your child strip naked 30 times before getting him on the bus comes or have a grand moll seizure, knowing that he could fall at any given time and knock himself out or worse, finding out he now has diabetes, scoliosis, or inability to eat normally are the zombies that I slayed while calming clients and administering retirement were the cookies I brought to the bake sale. All the while, the loneliness and isolation compounded by the mental, emotional and physical fatigue that was covered over with a smile and a positive attitude wreaked havoc on my health.
The good news is that there are ways to be the caregiver you want to be through supporting your own health and well-being.
I stay home with Travis and I understand not everyone is in the situation to do so, nor would it be the best choice for every situation. Whatever your situation, whether you give care to a loved one or caregiving is your profession, you are welcome here.
But, I warn you, apocalypses are sometimes scary, can get ugly, and seem to never end. And this blog is not intended to be a white-washed emotional bypassing unicorns and rainbows blog I want to provide real support to move myself and others from surviving to thriving, even in troubled times. So, if you are brave and want to kill some zombies, it will be my honor to share what I have learned and learn from you as we forge on and yes, even find and savor the joys, together, on our path of caregiving.
I see you. I am you. I thank you.
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