About This Collection:

Chronic illness…endless doctor’s visits, medications, treatments. It’s a lifestyle like no other; and if you know then let this collection resonate with you. Know that you are not alone. If you don’t know what it’s like to have a chronic illness than let this collection be your voyage into a brave new world filled with courageous people whose goal is simple. It is merely to live…that is all. When some people’s dreams are being busy building empires, and others are to produce enough heirs to run them. For some people, the victory is waking up and getting out of bed, and some days that is not even possible. These poems are dedicated to all the chronic illness warriors out there! A lot of my poetry comes from personal experiences that I have dealt with battling Factor V Leiden which is a clotting disorder and Postural Orthostatic Tachycardia Syndrome which is an autonomic disorder that effects heart rate, blood pressure, hydration, and causes chronic fatigue and syncope. For more information on both of these disorders, here are some reputable sites to learn and find resources:

Related Disorders

https://www.dysautonomiainternational.org/page.php?ID=30

Home Depot

I came home from the hospital to a house full of renovations stuck in the living room facing my front door. I could not even make it upstairs to my bedroom, to my own bed. Every time I heard a knock at the door; I did not know if the person on the other side was a nurse, or a physical therapist, or a contractor.

I got used to strange men invading my space, and they got used to me to the point that I might as well have been wall paper, another fixture of the house that they were fixing up. They got used to my wheelchair and my hospital bed. They even got used to my physical therapist coming in and out though admittedly that took some getting used to. Men do not like to idly sit by if they detect a hint of pain, and healing is slow and torturous much like renovating a house.

 When you do finish, there are worries. Will the pipe burst again? Will I stroke out again? Is this the one that will kill me? It’s a valid question, and you can do everything right, and everything can still go wrong. No one knows the future. When God calls you home, when nature sweeps your house under a flash flood, no amount of assurances, can ease the grief of losing everything you hold dear.

After the dust settles, and the workers are gone, and the new wallpaper is up, or better yet, shiplap because wallpaper is so 1980’s, and you are starting fresh again. You have to start living, appreciating what was, and what now is. You have to live in that house and that new body. You have to make a new life, have to look everyday in the mirror at the body that survived in the house that was remade. There were so many rapid changes. Will I and the house hold up to the test of time? That is the question that haunts me in the back of my mind where my blood clot used to reside.

All I know is this that houses are meant to be lived in and lives are meant to be lived out. I have the good fortune for a second, third, fourth chance I may not get another. The pressure to live it out is so intense. When time is borrowed; time is cherished.  I’m scared of losing more time. I’m scared of wasting it on minutia that in the long run does not matter. Scared I missed too much time recovering as I watched too many of my loved ones live their lives and do what I am not able as I recover. I want to live! I want to enjoy life! Every moment!

My vision of the ideal life may change. It may be forced to change as much as my home was renovated. Those who have thwarted death as many times as I have know how to adapt. Know how to shed their skin, to shed organs, shed blood, shed tears, shed whatever we need to survive. We are survivors after all.

At some point, we would like to come home. Let me rephrase. At some point, we would like to feel at home in our houses and our bodies. To feel at ease and warm as if under the covers of our childhood beds. To feel the smile that’s so familiar from that story heard one too many times at the family dinner table. To feel like the door can be shut and our breath can be caught. To just breathe. To feel your breath in and out, in and out again. How glorious are your Lungs?! To trust that they will work and will keep working. What a glorious day when I can trust my body again. When I can come home to my body. Be one with my body whether it works properly or not.

A Veiled Christmas Tree

The veil was torn, and like a rug pulled from under me, I fell to the ground. Laid out like a corpse for all to see for the first time, I was exposed. You didn’t ask to see me like this, and I didn’t want to show you. I never hid who I was or what I go through, but plucky charisma goes a long way to assuage the burning hell I walk through on a daily basis.

Incapacitated, emaciated, gaunt, breath shallow until I smell life and my lungs hold on to that oxygen desperately like a toxic relationship pushing and pulling my chest. My heart working double time to compensate. I wake disoriented to see you in the doorway smiling at me as I come to. Your eyes heartbroken for the both of us. At first, I thought you were a mirage.
Something I dreamed of often so when you spoke, and I heard the kind timber of your voice,
I was taken back.

“Feliz Navidad” you said. A Merry Christmas it was indeed. Maybe this year this was our gift to each other. Pain and tenderness like a Christmas tree’s twinkling glow in the darkness such beauty and life from a plant that was violently severed from its roots oozing sap. Death always smells so sweet when it’s dressed up.

I am not dying, but a part of me did that day. The part that checks all lists twice and tries to make everything perfect. No one, especially me, could have predicted this would happen. I could not plan for it. I could not prepare you. My plans go to shit anyway, but at least we would have had a plan. Destiny interceded for us.

Like vapor clearing from my eyes you vanished. A plane to catch, a continent between us, you might as well have been a mirage. I could explain away an illusion of my fragmented mind but not a man who leaves. I know I was in good hands my friends rushed in, tapping into what all mothers know and only the ones they love benefit from, the nurturing touch of the scared yet courageous. Makeshift nurses, battle tested, and battle ready. They swarmed me in a frenzy, and you made your exit. All I wanted to know for months was if you would cross that fence you’ve been hugging like the door jam you left. I guess I got my answer.

I couldn’t help but think that this was our chance. Your chance to show me what I am to
you. In the frenzy, your voice rang out “feel better” before everything went black, and all I heard was the hollow sound of your footsteps walking away. I should hate you for leaving, but I don’t. You did as much as you could. Loved me as much as your heart allowed. Your veil was pierced today too. You could no longer hide behind the Casanova bravado you bolster. You were exposed under the twinkling light of a Christmas tree.

Hostile Womb

The doctor asked me if I ever miscarried before. I hadn’t. A virgin can’t miscarry, but he doesn’t get to know that. I’ve known for some time that my clotting disorder would cause inherent dangers with pregnancy. Getting on the pill nearly killed me. No doctor wanted to take the right to have kids from me, but it seems like God already did that for me, to grow the child in my womb, for their blood, to be my blood, to be tethered, bonded, I could stroke, or the baby, and vice versa.
      “You have to be careful!”
      “You have to plan!” 
The male doctor scolded. I quietly nodded my head in agreement, I’m a no kiss virgin! A pro-life advocate who is terrified she will die if she ever gets pregnant. Terrified one day that I will have to make a choice, and I wonder if it will be the right one.

I could gamble with my life, with my baby’s under doctor supervision, be on bed rest, carefully medicated, carefully monitored, risk death for life, trade my life, and maybe gamble for a baby, be the sacrificial vessel my foremothers were. For them, there were no guarantees just blood and death and maybe if they were lucky life. Mothers were expendable, children were reproducible, men were indispensable!

I will never know what it’s like to feel a flutter, a kick, a heartbeat, to feel my baby in utero.
I will never know what it’s like to tell my future husband that we created a life, that his DNA lies inside me that his name will be carried on. I won’t share that special bond of womanhood that shared sense of trauma and pride and celebration. Every baby shower, every child’s one year old birthday party a painful reminder of my hostile womb, my defect, my inadequacy,

I thought about surrogacy. I still wanted to see my smile and my eyes and my curls in another being intermixed with my future husband’s features, but how can I ask another woman to take on the risk I would not ask of my body? How can I have her experience the joy I will never know myself? I’m not sure my body could handle the surge of hormones, or if like the pill that too would kill me. Besides there are no guarantees the same malady that plagues my body would not be encoded in the transferred genes. Should I gamble on such an illness that has nearly killed me 3 times on an innocent child? Maybe they get it, maybe it would be less severe, maybe there would be medical advancements. Do I have a right to play God and upset the natural order of things? I don’t know, and I don’t judge.

And then there is adoption and foster children, and stepchildren, and no children that too is an option. Will I even be healthy enough to raise children? Will I love my chosen children? Will they love me? Will I still feel a twinge of phantom pain in my hostile womb of ghosts of unborn babies dreams I was born to have, and dreams that were miscarried. I know I will love my children if I have them however they come, but that love will come with pain. It is my prayer that they never see it, my prayer that they will be loved unconditionally far beyond blood ties, my prayer when they seek their own womb mothers and seed fathers that I will embrace their journey with grace and openness and not the hostility that so many adoptive children are torn between their family and their biology. It is my prayer that my love for my children is not sabotaged by my hostile womb or my pride both are deadly to an innocent babe.

You are medicine, you are healing, you are what I need. Not the constant dopamine hit that I took, and the withdrawal of the last twenty men that I tried to love but that never seemed to love me back because they left and came back and left and came back before leaving for good. 

They left me searching for the next hit. Truthfully, I still search sometimes. My body still remembers the rush of knowing a man is undone just by the site of you. A quick glance from the eyes to the lips even lower studying the curvature of your body is enough to send shockwaves through a man. Make him buy you drinks, buy you dinner. It’s the first sign of his interest. The first sign that leads to love, but it does not show respect. Show me a man that respects women, and I will show you a man that was raised by a woman who respects herself and taught her son to do the same. 

When I say you are medicine, I mean my scars still itch, but you kiss them anyway. When I say you are healing, I mean you set boundaries for me, and they are good. When I say you are what I need, you, darling, are what I wish I had from the very beginning, but I’m glad. I’m glad that I went through those men because now I will cherish you like licking the whip cream off the cherry on top of a sundae, slow and sensuous, relishing every moment, you can taste the cherry bursting flavor, the sticky white whip cream residue oozing down the sides. The best part about eating the cherry is the rest of the sundae. You still have the rest of the sundae below to eat, and we have so many more Sundays of our own, and someday I hope to spend forever and a day kissing old scars that are faded and no longer itch because we took the time to heal them. 

By Hyacinth Hale

Bitter Pill

I asked my hematologist if there was anything that I could do about me losing my hair. You see, I knew it was a side effect of Coumadin, but at 30, I was not quite prepared to be the spitting image of my father; which is to say, my hair receding further and further back first, covered by the comb over and then, teased just got thinner and thinner; until, it was starting to spin into a salt and pepper speckled horse shoe singular like thread, and my fear was it would continue this way until all of my femininity was wiped away. 

My doctor looked at me, wall eyed, ready for a fight, triggered by my question. He fired back, 
     “It’s a lifesaving drug!”
I nodded timidly and say, 
     “I know. I just want to know if I should just start wearing wigs.” 
I smile a little to ease the tension, and he releases the grip from my metaphorical shoulders, and tells me all my options, but I did my research already. I just needed confirmation. My hair is not growing back. 

Can we just take a minute to recognize the doctors who day in and day out work tirelessly to save lives only for someone to willingly choose to die for their vanity. I could imagine how many conversations he had just like mine being a Hematologist/Oncologist, and how much it would burn the insides of his soul like molten bubbling tar to know a drug could save a patient, and they chose to die for their beauty, for frivolity. I felt incredibly kindred to him in that moment. Trauma recognizes trauma. We forget doctors even though they hold scalpels; they too have scars. 

But in that moment, I could not find the words to explain my hair, that frivolity, while I deemed it not worth dying for, it certainly was worth living for. The moment I came out of the hospital after almost dying from my blood clot, the wind whipped my hair. My baby nephews, when I held them up to my shoulder, they used to pull on my brown chestnut ringlets. I’ve had men nuzzle into my neck and whisper secrets into my ear as they tug on my ponytail. As I aged and my gray hairs were coming in, I actually loved how the sun gleamed over my hair. My grays sparkled like diamonds in the ground! I will never know what it’s like to go full granny haired white.

So yes at 30, the life-saving drug is a hard pill to swallow; I swallow it. I will swallow it every day of my life. Hopefully, it will be a long one. Hopefully, I will learn to love my body in all states of being glorious main, thin tail, horseshoe, shaved head, cue ball, wig, weave, scarf, topper, hat and my personal favorite messy bun it’s a lifestyle don’t you know!

By Hyacinth Hale