Five minutes to noon. I drag my rebellious body from the covers, forcing my heavy limbs to move up and down and forward, slowly making my way down the hallway. I couldn’t even attempt to stand up before now.
My heart flutters and thunders irregularly. Racing. Aching. Breath comes only in short gasps.
In the kitchen (finally) my trembling arms pour water, adding drops of my herbal heart formula which I raise to my lips with great effort. Then I sink slowly to the floor, my legs unable to hold me. Trembling and breathing laboriously, I sit with my mind a jumbled haze of broken thoughts.
“Benadryl, 50 mg, sedative, depressant, too much?” I’d been desperate for sleep. “Two weeks of insomnia. Too much.” Was it my date that over-did it for me this time?
I’d stayed out too late the night before last. “Ten PM. Too late?” Ten PM is never too late for anyone else my age. I’d lost track of the time. There was tickling in my nose by the time I got home. “Ugh, sick again. So fast, so easily.” But after resting all morning, I’d felt well enough to have that date.
It was a day of surprisingly high energy on Friday, given the intensity of my week. I went to work, I cleaned my house, I worked out—finally on my way toward reaching my goals again!
The floor feels hard beneath my flaccid body now. There goes the tingling sensation in my extremities. The numbness. I continue to gasp for air. A familiar anxiety (perhaps from altered blood gases) swirls around my head.
Is it pointless for me to have dreams? Why do I bother to go on dates when I can barely even live sometimes? I feel a step away from death. The heaviness in my chest, the soul-deep weariness. But my spirit flies. The me that lives inside of this body is so ready to live and to adventure! She has so many ambitions and aspirations. My mind soars. My soul hungers!
The jumble of thoughts continue. “I need to shop. Soup and cornbread sound good today. I need to wash my hair. Why is my arm so sore? I have to eat more food if I’m going to see any gains from my workout.” I didn’t have the strength to cook yesterday.
My mind reels on to the wild and weary beat in my chest.
Living with a chronic medical condition can be so embarrassing and frustrating! Persistently it threatens the life I want to live. Nobody understands that when they ask me ahead of time to participate in things, I have no idea whether I’m going to wake up like this on the day of the event. I have no idea whether I’ll be able to follow through on things because some slight over-exertion can knock me out for days at a moments notice. I can’t stand to be seen as weak or broken, so I don’t explain. People don’t understand. I just try to keep everything carefully balanced.
“Just let me fulfill my purpose God!” I pray again.
“I cannot afford to be sick again this year. I have to work tomorrow. Why am I even a nurse? Who am I kidding that I can do this?” I search through the haze of my brain fog to retrieve my medical knowledge. “What is even happening here?”
I think of my mantra: no matter what, keep starting over!
It’s hard not to be discouraged. “Is it even realistic to think that I can really live?!”
It’s seemed that every time I start making progress, bulking up, getting stronger, and enjoying life—another illness hammers down and hurls me back to square one. It used to completely discourage me, before I developed my mantra. No matter what, keep starting over!
After I sit for maybe 30 minutes, my heart formula and vitamins start to kick in. I’m determined to make food. I have got to eat today! Slowly, deliberately, I chop potatoes, and carrots, onion and celery. My face is tingling. I breathe out through pursed lips, each breath a measured, yet insufficient effort. My cousin must hear my labored breathing, because she suddenly calls out from the living room to ask if I’m okay.
“I’m having a rough time today. My heart is acting up, but I took my medicine, and it’s getting a little bit better.”
She goes back to her conversation on the phone.
No one really knows how much effort it takes for me to keep doing the minor duties of life sometimes. I just keep doing them. And I try to live. I don’t want my heart defect, or my fragile immune system to dictate my life to me! One of my great fears is that no matter how hard I fight, it will.
But I tell myself I’ll keep starting over, I’ll keep starting over. This is not the end, and this will not stop me from living!
Sometimes we can be happy simply because we choose to be. Resolutely, we may count our blessings, and decide to celebrate all that can be celebrated in life. Then as we choose this, and choose this, and dwell on it, it becomes a reality.
We can hope to be seen for more than our defects. But more importantly, we must see ourselves for more than our defects, even when they continue to interrupt our lives.
The key for overcoming every obstacle is the same, and needs only to grow to meet each challenge.
We must be patient when we cannot take the next labored step, trusting in a power above and beyond ourselves. Trusting that the sun will come out tomorrow. And if it does not, then let us be content to shine a light amidst the darkness. Maybe you too have felt in some way that for every step forward you fall two steps back. But sometimes progress and success are simply directional. Are we facing the right direction, with our faces pressed into the driving storm? Every inch that our sodden feet strain forward is success!
Life may present a revolving door of struggle—at times as a result of our choices, and at times completely beyond our control. But whatever the hardships of today, or whatever the missteps:
“Tomorrow is always fresh, with no mistakes in it.” L.M. Montgomery, Anne of Green Gables
Tomorrow is a new opportunity, a new world of unknown possibilities that yesterday cannot darken unless we let it. So let it be a brand new day. Treasure every moment of it.
And no matter what, keep starting over!
The Longest Road 
My Dear Longest Road, I had no idea things were so laborious for you, and your body sometimes.
This is encouragement I needed, today. My struggles are very different from yours, but your endurance inspires me. Your dedication to a full livelihood! If I can be as deliberate I will be able to fulfill all my desires!
I’ve heard people say that God doesn’t give anyone burdens they cannot shoulder. I’m unsure of the theological truth of the matter, but I can’t imagine many people understand the effort it takes you to shoulder life’s daily tasking. I understand the need deliberation and a successful day taking significant effort. I understand the desire to not talk about it.
Hearing your story does cause me to appreciate blessings I take for granted in my own. Thank you for sharing
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This is what makes sharing worth it!
Yes, you absolutely can fulfill your desires and ambitions. We can all make progress toward our dreams.
I also find fault with the claim that God doesn’t allow “more than we can bear”. It isn’t even biblical really. Paul said in one of his letters that they were burdened “beyond their ability.” But what does make the difference in the Christian perspective, is that those truly unbearable burdens are hoisted on the shoulders of Christ in a beautiful divine exchange:
“ the oil of gladness instead of mourning, the garment of praise instead of a faint spirit…”Isaiah 61:3
“He gives strength to the weary, And to him who lacks might He increases power.”
Isaiah 40:29
The grace from the power outside of ourselves unites with the inner strength of the determined decision inside of us.
I love this quotation:
“As the will of man co-operates with the will of God, it becomes omnipotent.” 💥
I think that determination toward any Good, strikes a note of harmony in the universe, and the power of the universe bends reality towards it.
This is the power to pursue every good and noble pursuit.
I’m so glad that you’ve been challenged and encouraged 💙
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It is encouraging that despite what comes your way you continue forward! How inspiring and humbling at the same time. Thanks for being real and raw! It’s hard to find. 🙂
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