Zebra Dazzle's Strife

A poem about living with chronic illnesses

Frozen in time

Everyone’s life moving forward except for mine

I fought through so much emotional pain

Only to have my health go down the drain

 

The energy has been drained from my person

Every day my suffering worsens

I droop like a weeping willow

Not able to support my own weight anymore, to bed I must go

 

Questioning my own sanity

The people supposed to help me have robbed me of my humanity

It is not in my head

There is nothing wrong with listening to my body and lying in bed

 

Even when I was no longer a medical mystery

Life just kept throwing new illnesses at me

What path am I expected to take?

When my body screams from weakness and everything aches

 

My knees pop out from sitting with my legs crossed

Who would think a harmless act could have such a cost?

Even walking a block could land me in bed for days

That is the terrible effect of post exertional malaise

 

There is no cure, research is lacking

We have been left behind; we are cracking

The zebras that have for so long been ignored and dismissed

But we refuse to be silenced; we will resist

 

Myalgic Encephalomyelitis

It can be as debilitating as multiple sclerosis, cancer, heart failure, lung disease, stroke, or meningitis

About 15 to 30 million people, 75 to 85 percent of them women, worldwide suffer from this devastating malady

Yet there is no treatment because of the medical establishment’s bias and apathy

 

To say we are just tired is a gross affront

We are fighting just to think straight daily on our own battlefronts

A seemingly insignificant infection, you blink

And poof goes the life you knew before, down the drain of the sink

 

Hypermobile Ehlers Danlos Syndrome

A mistake causing faulty collagen hidden in the genome

At the very least 0.02 percent of people are affected

It takes on average 12 years to be diagnosed because psychosomatic illness is automatically suspected

 

Our loose joints go snap crackle pop

Pain is nonstop

Frequent bruising, fragile, soft, and stretchy skin, dislocations, subluxations, and easily scarring

Not to mention the slate of comorbidities, which can be oh so jarring

 

Mast Cell Activation Disorder

A problem with the first line of defense of the immune system, in the tissues these cells are harbored

It affects every system as they overreact to seemingly harmless triggers

They dump histamine, heparin, leukotrienes, prostaglandins, tryptase, interleukins, and tumor necrosis factor alpha into the bloodstream, causing a reaction of enormous vigor

 

At its worst causes anaphylaxis, and can make your skin red, itching, and burning

Stomach churning and hurting, nausea, vomiting, diarrhea, bloating, and heartburning

Brain fog, headaches, light-headedness, tachycardia, hypotension, and throat swelling

It’s like your immune system hates you and is rebelling 

 

Thoracic Outlet Syndrome

Causing swelling, numbness, tingling or pain in the arms and fingers when arms are over the head, making it a daunting task just to use a comb

Compression of the brachial plexus, veins, or arteries in the outlet between the shoulder and the chest

Approximately 0.3 to 8 percent of the population has this anatomical defect

 

It’s a struggle to wash our own hair

At least after the diagnosis I understood why jumping jacks and reaching for the sky were too much to bear

Some even get blood clots that could end their life

Few can imagine existing with such strife

 

Craniocervical Instability

The ligaments holding together the first couple of vertebrae in the neck acquire a detrimental excess of laxity

A skull not held up causing brain stem compression

Leading to neck pain and all kinds of neurological regression

 

Can’t hold your head up, it feels like it weighs a thousand pounds

Have to wear a cervical collar, which is as annoying if not more than it sounds

Sitting up for more than hour becomes so unbearable that most of your time is spent in bed

When left untreated the symptoms only spread

 

 

Postural Orthostatic Tachycardia Syndrome

75 percent of people with it have encountered doctors who haven’t heard of it; how noisome!

1 percent of teens have it, 85 to 90 percent of them being women, yet it is largely unknown to society

Caused by malfunctioning of the autonomic nervous system, it’s too often dismissed as anxiety

 

Heart rate skyrockets upon standing, making it hard to leave home

Always having to have somewhere to sit down becomes so tiresome

Blood pools in the extremities, turning them purple and red

Light-headedness and dizziness ensue as less blood and oxygen gets to the head

 

Type One Chiari Malformation

Cerebellar tonsils descend into the spinal canal as an adaptation

To a back of the skull that’s too small or formed wrong

Affecting around 0.1 percent of people, it is often not discovered until adolescence or young adulthood but is lifelong

 

Ears ringing

Limbs tingling and stinging

Headaches that get worse when you sneeze or cough

Before it you probably never would have expected to be excited to have part of your skull cut off

 

These conditions have shaped my world, obstructed my intended plan

I have had and continue to grieve for the life I had dreamed of that ended before it even began

But I must have hope that I can have some type of fulfilling life

There is no other way to get through this constant amount of strife

 

To my surprise and delight, I have found a wonderful and supportive community

The zebra dazzle of people with Ehlers Danlos Syndrome that has come together to help one another deal with this lunacy

No two zebras have the same stripes but that is part of their intrigue and elegance

Together we will lessen each other’s isolation, loneliness, and helplessness

 

Reviews

[TamsinDaya]

I have no words for how moving this is or how beautiful it is. I'm sitting here crying.

All I can say is thank you for having the courage to keep going everyday and thank you for sharing this poem. Hopefully it helps raise awareness and compassion for people living with these ailments.

Thank you so much.