A Hard Day
This week I talked with a friend. We naturally checked in with each other about current states, as people do. I told her the day was hard.
That’s been my default response for when I don’t know what else to say, and it’s one I use only in close relationships. I’d love to say that everything is hunky dory and just right every day; doing that would be insincere.
She is the most marvelous variety of friend.
“What does a hard day mean to you? What does it look like? How do you feel? What kind of impact does it have?” She asked these questions in such a way they rolled through our conversation like perfectly ordinary questions.
She caught me off guard. We were walking through the woods, side by side. I stopped and looked down at the ground a few feet ahead, staring as if I had found something deeply significant. I think I had, and it wasn’t on the ground.
“I know I can’t understand your experience. I don’t know what it’s like to be you. I’m not looking to compare you to me or anyone else. What I want is to show up for you. I want to appreciate you, right where you are, and meet you there. It’s easier for me to do that when I know what “hard” means to you.”
No one had ever asked me those questions. At once I felt overcome with a feeling of not being understood, or appreciated, as she said, in nearly every relationship. I felt the connection I had been missing without knowing.
Before I put my foot in my mouth further, I would like to explain that this connection we had felt like one of those once-in-a-lifetime experiences that involves a higher vibration or a direct line to God. I do not mean to say that relationships with my friends and family are in any way inadequate or disappointing. This moment was a spark that my spirt truly needed and I am convinced that’s precisely what drew us both to this discussion on this particular day. Additionally, I share this because I am in the business of hard days. Nearly everyone I encounter is having a hard day - some the most difficult day in recent memory. My hard day isn't the same as anyone else's, and as my friend suggested that doesn't matter. What does matter is that I can recognize and appreciate someone else's hard day.
I did not know how to respond to her questions. I decided not to think about it - I started talking. Her words disconnected the circuit in my brain that normally requires me to analyze all statements and questions extensively before sending those messages to my mouth to vocalize. I was able to talk freely.
For the record, I live with three chronic illnesses (celiac disease, a chronic Epstein-Barr infection, and endometriosis). My son lives with epilepsy, night terrors, PTSD, and a gastro-intestinal condition that sometimes leads to surgery. The three members of our animal family are geriatric, two live with asthma, all three live with arthritis, and one has an unexplained skin condition that requires medication to prevent him from ripping his skin apart and being a walking, oozing wound. My husband works 24-hour shifts and many days and nights I am the only adult at home. Six months ago I left an established career; I now work from home to manage two businesses and in a matter of days I’ll be in a PhD program. This is my life and I love all the parts of it. I don’t always like those parts. Sometimes the parts are hard.
A hard day begins with less than three hours of sleep. I can get by with three. I know that’s not healthy and self-care is a priority, but please understand me when I say some nights that is not possible. I cannot look away from a terrified young person who wants to be held. I cannot ignore the physical pain of a polite, dignified, gigantic dog who relies on me for medication at a certain time to ease his pain. I know I will have sleepless nights. Some days that shows up harder than others.
A hard day is one where my face hurts - it feels like it’s been pounded with a meat tenderizer. My legs ache. It’s difficult for me to make decisions because my thinking is cloudy and slow. My fingers aren’t strong and I am not aware of when I am holding things, so I drop them. I break glasses and plates. I drop books. I look and feel really clumsy. In truth, I simply cannot recognize tactile feedback from my hands. I have to look at my hands so my brain has the information of what I am doing, otherwise my fingers just let go.
A hard day involves exhaustion. It’s beyond the tiredness of poor sleep or the fatigue of chronic stress. It’s my-entire-body-hurts-and-feels-like-1,000-lbs-and-taking-a-shower-or-eating-is-too-much-effort exhaustion. It’s wanting to live life and fighting against my body for the ability to do that.
A hard day is hearing from well intentioned people that they’re tired, too, and in fact they had less sleep than I. It’s knowing that no matter what I say, someone will compare me to others and use that comparison to assure me things could always be worse. Yes, I am thankful I have my “health,” a loving family, and the tangible resources I need to survive. On a hard day those are dim lights through the tunnel. It’s feeling misunderstood. It’s feeling invisible.
A hard day is responding to a seizure. Maybe 15. Maybe 40. It’s remaining steady while thinking about how much epilepsy has changed my son’s life and how we adapt so many regular things to get through a day safely. It’s the grief I have for a perfect version of childhood I so very much wanted him to have - a childhood that didn’t involve regular visits to the clinic or diagnostic studies. It’s the hours and days after seizures when he feels uncertain and needs physical touch to reassure him. It’s knowing that he needs to be near me and feeling overwhelmed by the idea of supporting him when I’m carrying my own stuff. It’s graciously responding to the leftovers of epilepsy like unbelievably unstable moods and the crushing fatigue and lethargy that follows seizures.
A hard day is recognizing that sometimes the best I can do is make sure I eat and close my eyes for a few minutes because someone else’s needs are more urgent. It’s knowing that there are hours and days of my life that feel like they belong to someone else because I give them away. I give them away because I am the caregiver. I am the most trusted, loved person. It’s feeling that extreme dependence conflict with my own needs to care for myself. It’s feeling trapped.
A hard day is feeling like I’m not enough. I’m overwhelmed and not able to do and be the things I’d like. I’m not empathetic enough. Not patient enough. Not rested enough. Nor normal enough. Not credible enough. Not easy enough. Not healthy enough. Not available enough. Not active enough. Not joyful enough. Not supportive enough. Not playful enough. Not skilled enough. Not effective enough. Not attractive enough. Not present enough. Not compassionate enough. Not diligent enough. Not gentle enough. It’s pervasive inadequacy.
There are more pieces to hard days. There are lots and lots of pieces to wonderful days and I do have those. I am grateful to have more wonderful days than hard days; it’s the hard days that seem to count double or triple, though.
And that’s hard.
Keywords: Epstein-Barr, caregiver, celiac, chronic fatigue syndrome, chronic illness, disease, endometriosis, epilepsy, health, overwhelm
May I share the wise words sent to me by a very gracious and kind woman?
"My heart hurts for your adversity and yet I know these difficulties are what shape us. As a gracious and kind woman I know you've had more adversity than you might have liked.
Chronic medical conditions, especially ones that are invisible, require tenacity and grace we didn't know we had. The rough days are grueling and the good days are hard. Thank you for sharing your story and further endearing yourself to your admirers. I am sending you my warmest thoughts of gentle, "normal" days."
Here's to the good days. Sending hugs and love.
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