Whether Angry Fireflies or Shooting Stars

be careful what you wish on…

I remember reading about Stephen King’s eyesight; how it was fading, years ago. Thinking at the time, “How will he continue to write, to create?”
I knew, of course, the process would remain the same- the creativity is intangible, entirely mental, but pouring it on to the page? How would he make it work, once he could no longer see the page? Nothing seemed to be more unfair, for an artist to lose their ability to see the world around them… to visually absorb life.

So many visceral experiences lend their existence to mark our lives, some with razors edges, most with the brush of a feather. My father’s open-heart surgery in 2011, cut into me with a saber; so that when I returned from caring for him, I didn’t think much of the other changes that were happening around me, to me. The insomnia, the relapse into PTSD triggers, the world overshadowed by shooting stars, the constant headaches… I didn’t think anything of my body’s breakdown. I ignored much of my own pain, in all things, like so many of us do. The sparkle and random glowing lights were lightning flashes then. The disease burning through so much healthy tissue, my field of vision was more a light show than pictures melting away. The Dance of the Angry Fireflies.

Looking back, I’m embarrassed to admit that I didn’t take care of my health; I bought into the, “It’s nothing… you probably just need glasses, or a good night’s sleep.” I allowed myself to remain blissfully ignorant until late 2012… until pieces of my world started to disappear completely, and daylight seared like hot pokers in my eye-sockets. We unfortunately listen to those closest to us, even when some parts of our hearts and minds know better, to ignore things that are going wrong. I think, most of the time, their refusal to see what is happening, to listen to our pleas for help, comes from their own fear of a loved one being in pain… sometimes it comes from simply not wanting to have to expend the energy on someone else, and then there are those few who fear having the attention taken away from themselves. If only one thing is taken away from this – Life is too short, and health is too precious, to allow anyone to deter you from taking care of yourself. I know how high the cost can be; find a way.

I had one voice to hang on to though… Sweet, kind and loving. Someone I needed to have a bright future for, and no matter how dark or scared I was, for her I tried to be optimistic. After I finally went to the doctors in 2012, in the midst of panic and grief for the unknown future and the loss of independence, the loss of my sight, becoming a burden… My, then thirteen-year-old, daughter made me a promise… “We will put beautiful things into yours eyes. Glorious things, right up until the day you can’t see them anymore.” We made a wish on the shooting stars that only I could see.

9/27/2012 left retina

9/27/2012 right retina
The scarring causes blind spots in your vision, something akin to watching a projected film of your world, melt before your eyes…

…. Leaving behind blackness, surrounded by flashing lights – the optic nerve trying to make sense of what is happening, its last dredges of life, hanging on and screaming with the only voice it has.

By early 2014, I had 50 to 100 scars in each eye, a list of doctors, misdiagnosis, flashing lights filling the entirety of my visual field, constant headaches, photo-phobia (severe light sensitivity due to exposed nerve damage), no REM sleep, no treatment plans, no hope, a failing marriage, a house that was falling apart, the passing of a dear friend to cancer, and a teenage daughter to raise. No help to keep the promises made for glorious sights, the splendid images to fill our eyes… silently new wishes were made; something had to change.

The visual field tests for my center field of vision were first done three years after I noticed the initial signs. The black areas were gone; the grey, were disappearing.

1/27/2014 left

1/27/2014 right

June of that year my husband left; and I found out the intricacies and reality of the rare Auto-immune disease that was eating holes through my retinas – it was only going to get worse from here on out – Yay, specialists! Punctate Inner Choroidopathy or PIC, Wikipedia, hell even the valid medical research up to that point, had no idea what the disease involved- just about everything they wrote was outdated and wrong. Only now, in 2019, and only in the UK essentially, are Medical professionals acknowledging the pain associated with the disease… thus, those afflicted, not only suffer the stigma of a rare condition, with limited treatment options (treatment plans consist of: ‘let’s throw everything at the wall, and see what sticks” tiresome and expensive scenarios), the patients’ quality of life is ignored, if not subjected to ridicule from their own care providers. This is what it means to carry a rare disease, any rare disease. After three years… so many who I believed formed the foundation of my circle of support, who read what was written, who listened to what they were told, thought they were experts- thus I was over-reacting, and had general anxiety disorder. I was crazy. I had no right to trouble them with my illness, my life. And now to add insult to injury, the nuances of slander, when it comes to a failing marriage, didn’t help.

“Stop wearing sunglasses… the light doesn’t actually bother you.”

“I’ve read what those people in that support group on Facebook are saying… they’re all being over-dramatic. It’s not a real disease, like Macular Degeneration. I think you must have General Anxiety Disorder… making everyone’s life miserable, seeking attention.”

“It’s just a little illness, like everyone has to deal with… get over yourself.”

“You’re worthless. You aren’t going blind, you’re just worthless.”

I withdrew; but found that there were other voices to hear, other hands to hold, friends that became family, who thankfully refused to be ignored. Funny how when we stop listening to the negative words, we find so many positive ones are there… We just need to listen a little harder to hear them.

8/07/2014 left

8/07/14 right
By September 2014, I started a new treatment plan… extremely high doses of an Immune-suppressant commonly used for heart and kidney transplants, in hopes of stabilizing a disease that was entirely out of control. I had to stop its progression, and take back my life… I had to be there for my daughter. As with all things, the payment due for this treatment: It’s very much like chemo therapy at that dosage.

I balanced the six hours of fasting, with the loss of strength and hair, the daily purges, the bruising and being placed on the platelet transfusion list, just in case I injured myself or had a bleed in my digestive system during a purge episode – with trying to get my daughter to take school seriously, and boys not so much. I had to put writing and my own business aside to back up our benefits, the prescriptions and medical bills were adding up, and as I mentioned the house had… well, issues.

My lower peripheral vision had been significantly compromised; I wasn’t a graceful creature before I couldn’t see where I was walking… now, I was a road hazard. The falls were spectacular. Broken fingers, sprained wrists, torn patella tendons, damaged ACL, twisted ankles… slowly but surely, I mastered walking, even hiking – with help. And by God… We started putting beautiful things in our eyes!

• 

• 

• 

• 

• 

• 

• 

• 

• 

• 

• 

• 

• 

• 

• 

• 

• 

• 

No matter how dark this may sound; this isn’t one of my horror stories. The desperation, loneliness, and outright depression hasn’t been, and won’t be, given the appropriate attention it undoubtedly deserves — as those who have gone through major medical and tragic life upheaval ought to have acknowledgement and validation in their own right, for all of their struggles – but for me, and mine, the instances of what was happening, weren’t nearly as important as what came about because of them.

The medication was working. By the beginning of 2015, I could drive at night again, the flashing lights had slowed to a shimmer, the angry fireflies had become wall-flowers; and I found sleep. My God! … What one will do; what one will be willing to go through, for just a little bit of sleep after years of torment. The American Association for the Blind had given me more than the advice of a mentor; they had given me hope in the face of the inevitable. I found family in a few very close friends, who not only helped with the day to day juggling of a grueling work schedule, but also with my daughter’s school schedule. They helped me work on the house, with projects that would have been too dangerous for me to do alone with a compromised immune system. They held my hand when the doctor appointments exhausted my last ounce of resilience. We would talk late into the night about bright futures, and helped my daughter keep the promise that she had made to me when the disease first started… when it was just the two of us, making wishes on the shooting stars only I could see.

You see; upheaval and chaos, no matter how painful, ignites change. We wished for the chance to be able to see more; ultimately, we were given that opportunity. Be careful what you wish for… because you might just get it. I have learned that life can be a struggle, a flood that we fight… our heads going under water, and we thrash against the current for each precious breath. During my darkest hour, feeling beaten, I remembered I could swim. Floating to the surface, the water was buoyant and clear, the current simply a new direction, a new adventure. Maybe not …because you might get it …just be prepared for anything.

We live in a time when fame is handed out for insignificance, and expressing pain can be mocked as being self-serving, feeling sorry for one’s self, exaggerating for attention, or looking for pity. Over the past eight years of attempting to understand a rare disease, of going through various levels hell, I begged and pleaded for those in my inner support group to help, for doctors to show compassion – please understand that the panic of the unknown, the sleep deprivation, and the pain is not now, nor was it ever, a call for attention. Being reduced to that shell of a human being, is humiliating, and decidedly not something anyone wants to draw attention to… We are reaching out for someone, anyone, to provide comfort in a seemingly hopeless situation. This blog is not only to explain my withdrawal from my work, and my readers, but written for those who are going through the degradation, and the desperation I experienced. You are not alone. The panic and grief are temporary, if you allow them to be. There are those who understand, who care, listen for them, don’t give up. It’s when we give up… that ‘s when we become burdens.

Where are we now?

The disease reactivated in 2016, and again in 2018. We did what we needed to do… hugged, cried, started weekly injections of new medications, and found new adventures, new sights to see.

My daughter is an amazing, brilliant, human being, who doesn’t take a day of her life for granted. We have the most amazing support system, two people could ask for… We spend everyday trying to give as good as we get. We work. We play. We love. We laugh as much as possible. We do not let anything hold us back from what makes us happy. We grieve and we accept… I have a progressive, incurable rare disease… I am going blind. We will keep fighting.

And; I finally understand how Stephen King did it — Creativity is an open faucet, without a shutoff valve … I will write, even when I can no longer see the page; because even with my imagination, I can’t envision a world where I would stop.