I am hurling in a catastrophic way

and all around me:

meteors, shooting stars, cosmic dust.

There is no gravitational pull.

The dull, beaten-metal look

of the back of my eye was dormant.

Now awake and unfolding,

“5 years to 20/200.” I panic.

Do I submit to my inevitable blindness?

Do I fight–hope and make dua,

embracing the only weapon with the power

to change a person’s qadr?

“Let go your earthly tether.

Enter the void. Empty,

and become wind.”

But we are made from earth.

We are clay. We are not

meant to fly, one with the wind.

Who wants to live in a void?

Who wants to be empty?

I want to be free, not free-floating.

I want to be grounded. Earthly

and Divine,

the Prophet (S) had tethers.

I am married.

Is he my Khadijah?

I am a mom.

Is he my bridge to Paradise?

But did his wombly tether

catalyze my earthly loss?

Why me?

Why right now?

Central vision.

Submit? Fight?

Middle path? Hope?

Guard, or live?

Explanation:

At 14, I was diagnosed with Stargardt’s Disease, a genetic disease which causes central vision loss. I was told at the time that if I survived my teenage years with no changes to my vision, I would escape the worst impacts of the disease. I made it to 20 without any trouble with my vision and I thought I was safe. At 27, I experienced my first significant vision loss while I was pregnant with my son. Since his birth in 2019, I have lost five points of my visual acuity every six months. I went from seeing 20/30 corrected before I got pregnant with him to now seeing 20/70 corrected.

I am 31 years old and preparing to go legally blind within the next year, which will result in losing my driver’s license and potentially never being able to drive again. I love reading but have not managed to read a book in print in over 6 years. I love teaching and am trained as a high school English teacher but am wondering if the strain on my eyes and the limitations my disability places on me will lead me to quit and try to find another profession. Alhamdulillah, I will never lose all of my vision–that is a silver lining. However, my ever-increasing disability is existentially, emotionally, physically, and spiritually draining me. Every handful of months I perform some activity and discover I can no longer see something the way I used to. I am slammed with losses to grieve with no end in sight.

I am consumed in doubt, fear, and anxiety not knowing how fast my vision will decline, how much vision I will have at various points in my life, how much vision I will have left once my vision loss has plateaued, and whether having another biological child will quicken the rate of my vision loss. Do I find a way to submit to this unknown inevitability, accept and be thankful for the past and present? Do I fight and pray with hope and belief that Allah will perfect my vision through some miracle? How can I come to peace with my ongoing vision loss and also pray with a fervent desire that my vision will stabilize where it is or come back to me?