Help an Artist Regain His Sight

Campaign Created by: Melissa Edens

Goal : USD $15,000
Raised : USD $ 15,000


As our family, friends, and followers know, in addition to being a father of 8 and an Air Force veteran of 20 years, Jeff Edens is a talented iconographer and artist. If you follow his Instagram you may be wondering why he went from posting on JeffEdens.arts.and.icons (links at bottom if you want to see) every day to not posting at all for a few weeks. Here is an update to why he has gone silent:

In mid-June Jeff contracted a double eye infection (Pseudomonas) that left him blind. In the following week, he went to 5 doctor appointments in a desperate effort to save his sight. The first 48 hours were spent giving him antibiotic eye drops every 15 minutes - the doctor said we were in a race for time to keep his eyes from “melting.” Now three weeks later, he still has to use antibiotic eye drops every three hours to try to kill the infection before we can move into a phase of healing.

To say that this is a challenging and devastating blow for an artist with 8 kids is an understatement. And though he has kept his sense of humor, and we have been blessed by our amazing church family, we are starting to get a picture of some of the vision-impaired assistance devices he’ll need, the cost of medications, and - depending on how his eyes heal going forward - double cornea transplants. The doctor says his prognosis is good, and that with the transplants he may regain as much as 95% of his vision in another six months.

That is 6-months of adjusting to a life without his sight; it is also 6-months in which he needs extra help getting around, and where the family’s income-earning opportunities are reduced as a result.

We hesitated to do a fundraiser before now because we had no idea of what we would need going forward. We kept up with bills and other family needs using savings and being careful with our income. After adding car repairs to the list of immediate needs that really could not wait, we have at last depleted our savings. We are working now to rebuild our reserve funds to get Jeff tools and software that will allow him some return of autonomy, and to make sure we have what we need when the time for surgery comes.

A great big THANK YOU goes to our family and friends for the help, love and support you have given us in the last few weeks. As we move forward, here are ways we could use help with the next phase:

> Pray for us, that we will weather this life challenge with grace and good humor,
> help us raise the funds needed through a donation to this fundraiser link,
> share the link with veterans and art lovers in your social circles for a broader reach


TL;DR: You read the warning labels on the insert in the contact lens solution box but never think it will happen to you. On June 17, Jeff Edens, iconographer and artist, woke up to expect a normal day; by evening he was blind. With two cornea transplants the doctor feels like he could regain as much as 95% of his sight in another 6 months. In the meantime, he, his wife, and 8 children are learning to adjust to and navigate in a different world. The medical bills and tools needed to help him navigate the world more independently add more to their financial burden  than they are able to do with the loss of income for Jeff, and reduced income for Mel. As we move forward, here are ways we could use help:

> Pray for us, that we will weather this life challenge with grace and good humor,
> help us raise the funds needed through a donation to this fundraiser link,
> share the link with veterans and art lovers in your social circles for a broader reach

Thanks for being part of our community and blessing us with your prayers and your help,
Jeff, Melissa, and the kids


Update #15 - Fist post-surgery visit
October 13, 2020
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In a whirlwind of activity, punctuated by bouts of hurry-up-and-wait (which the military trained us well for!), Jeff had the first of his corneal transplants this past Friday. We spent the weekend with him resting and his right eye kept shut with a stitch. 

Our appointment with Dr Benson today went well. He was able to see to the 3rd line on the eye chart at first blink (20/80), and we're back to daily eye drops. For the next year. He has spent the trip home testing out his right eye versus his left. They do NOT want to work together. 

 He'll be on the eye drops for the next year. the next eye will be done... sometime. We have to cool our jets a bit and let the first eye stop being so angry at him for the assault. His vision should continue to improve month by month over the next year. More to come!

Update #14 Finding blessings in the Storm, and some odds and ends
September 28, 2020
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One sort-of blessing to this stage of life: a BMW SUV wiped out Jeff’s studio at our church at a time of day that he would have been working had he not been blind. He would have been seriously injured, at the least, but more likely killed entirely. Some good news from the crash: The people in the vehicle lived (I don't know what caused it - just that they had "non-life threatening injuries"); the icons and artwork he had that was completed and that was in-progress in his studio ALL escaped with only minor scratches; Jeff was NOT in the studio (he would almost certainly have been if he was not blind). Looks like it will be about another 4-6 months to get that straightened back out. 

See that article here:

In other news:

Later today we should be getting a new handrail installed on the front steps so he can navigate that area more safely. His basement workroom is nearly ready for him to begin using, and he is gearing up to practice the Accessibility features on his iPad. Pictures to come for the keyboard with its Braille stickers and such. 

On our last outing together by car, he declared he is still not fit to drive. 

Well, then... and I was all set to hand him the keys too. 

We heard back from SSDI and need to get him a comprehensive eye exam so they know he is really and truly blind. So I'll be setting that up today as well. They need to know what he can see when corrected and uncorrected. I'm actually quite curious to know myself. The Social Security group can't get him an appointment with one of their doctors for another 3 months. Think we'll just pay for that one up front. 

And finally, he has kept us hopping with going through boxes, putting things away, and getting the house better organized in general. All of it needed to be done... but now it is more important than ever for his safety and his ability to function. I am glad to say that we have at long last found a solution to matching socks. I bet you're dying to know!

SOCK MATCHERS! You slide the end of the toe of each sock into the matcher when you take them off your feet. Then when they go through the washer that way, they stay together and come out still matched. This may not seem blind-related but let me tell you what a GAME CHANGER it is in a family of ten, and in particular one with a blind guy. Oh. Yeah. At long last. It's the little things, people. 

Next eye appointment with Dr. Benson in Richmond is tomorrow - Sept. 29th. Will update again then for how that goes. 

Update #13 - Newest Braille books from the Greek Orthodox Church
September 28, 2020
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Newest braille books to come in. Got these yesterday from the Greek Orthodox Church bookstore. He’s also spent a lot of time getting back to old friends like the piano and some favorite e-books. Meanwhile, we are working together to continue to set the house up for easier navigation.

Update #12 As of Sept. 8 - Still practicing Braille and off all the eye drops...
September 28, 2020
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Practicing Braille can definitely give you hand cramps!

Jeff is off of all eye drops now and we should see the doctor again later this month. He has managed to very generally see a bit more here and there - very large print (nothing you’d see inside the pages of a book but blown up on screen), but his color vision is not quite right. He had been saving up with the boys to get me a new gas oven for my birthday, and Frank installed that this last weekend - Jeff immediately set out to Brailling the controls so he can at least try using the oven. And - aside from home stuff - he has lately made it a fun joke when out at stores to loudly whack his stick against things as we walk the aisles


Update #11 Some cool links we've found...
September 28, 2020
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A friend posed this question the other day: Why do they have Braille on the keys of a DRIVE UP ATM? Hmmm (just a little fun blind humor)

And a really cool tactile art piece for blind people:

I don’t want to lose this link - it is a Bluetooth Braille keyboard Jeff can keep in his pocket and use with his phone. Kind of geeking out over here!

Update #10 How does a blind writer write? A Braille-Writer!
September 28, 2020
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One cool thing about typing on a Braille typewriter: no ink cartridges to change out!
Check out Jeff’s newest tool!

Update #9 We found a way to join the "sighties" in a car game
September 28, 2020
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We took a longer drive last week and the kids and I were playing the Alphabet Game with the street signs passing by. Jeff found the perfect Blind Adaptation: he listened to us talking and if he heard someone say a word with the next letter of the alphabet (and that was not connected to the words we were finding for the sighted version ) he would call it out and try to beat us to the letter Z. It was super fun!

Update #8 How do you "erase" braille?
September 28, 2020
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Braille pencils (stylus)...
... and a Braille eraser... make a mistake? Push the dots back into the page! (Picture for this one is in the gallery!)

Update #7 just a joke today from August 21
September 28, 2020
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Saw a blind meme today: 

What’s the scariest thing a blind person can read in Braille?

Do not touch!

Update #6 Braille practice with the baby... (an update from August 14)
September 28, 2020
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I am catching up a little with updates on here - so settle in for a few minutes of reading. :) My apologies for the delays. Life has been a little busy!

Denny and Jeff got some Braille study time in together. Jeff is speeding up on his reading skills. It is quite the workout!

The doctor has decided not to have us come up for a physical appointment next week, but instead has given instructions for how to gradually reduce the steroid eye drops over another month and then we’ll see him again in mid-September. It is all about little steps of progress.

He does not open his eyes much, it is too bright most of the time, but when he does the way they look now makes his eye color very blue - his normal color is gray! It is interesting to see changes like this one.

There is a picture of the two of them together in the pictures you can scroll through. 

Update #5
August 7, 2020
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After getting the Pirate (eye) patch, we discovered in the wee hours of the morning that Jeff is allergic to the surgical tape glue they used to hold the patch on. Poor guy looked like I had hit him with a hot iron!  So we were given the go-ahead to ditch the patch, and start both eyes on steroids.

We'll return to "see" Doc Benson in mid-August for a progress check. 

In the meantime, we have gone to Michael's to get some things to try his hand at some artistic pursuits that are new to him - modeling clay and such. Those will be a little while before they get used. He has been pouring into learning Braille. 

You'll see a picture of Jeff and the baby sleeping - I thought it was very sweet that the baby snuggled up so close to him while he was resting after some hard study time. 

You can see some of the new Braille tools we have in the pictures, including the super-handy printed instructions for how to use the Braille Label maker!

I took Jeff for a brief overnight trip to Pittsburgh to pick up icons another artist was commissioned to make for our church. While we were there, he showed me a great breakfast place that he has been talking about for a couple of years now. The baby enjoyed spending time walking at the outdoor table with us!

We had a handicap-accessible hôtel room. That was certainly a different experience seeing the amenities they try to provide. As we walked from the parking areas to the hotel room, breakfast place, etc, it was equally interesting to see ways in which visually impaired folk are barely given a second thought for accommodation and safety- and to begin to understand more of what works, and what doesn't., 

Some have asked if any of his sight has returned, and he says perhaps 5-10%, where he still cannot make anything out per se, In the pics with his nose pressed against the screen of his cell phone, you can get an idea of what he can do - getting that close allowed him to see that there was a blown-up picture of himself with his label maker.  

How much more might we get? I don't know. But we were reading aloud from a book about the life and teaching of St. Seraphim Off Sarov, in which the blessed Saint healed people thought to be irreparable. In the meantime, we're taking it one day at a time. 

Update #4 - Keeping Socks Matched, Braille Tools, & Paperwork Challenges!
July 27, 2020
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Jeff and I drove to Pittsburgh this weekend to pick up some icons to bring back to the church. It was a trip originally planned to take place last March, but then the world stopped for Covid. Then the world was shaken again when this whole eye infection started.

Last week we got in some new things to help organize the kitchen in a way that he can begin to navigate in there more confidently. We eagerly were waiting for his new Braille things to arrive. And thinking of ways he might be able to continue working on things like the gold leaf at the church.

In the meantime, we were also in touch with his VA doctors and case manager, who advised us to apply for the VA Caregiver Stipemd, Social Security Disability, and increasing his VA disability rating since this is not going away any time soon (we're looking at sometime early next year.)

In looking over the mail from the weekend, we have been denied the Caregiver Stipend for the amount of time I need to be around to help him - their comment was that he should get into a blind rehab program (thanks, VA ). The SS office and VA disability will require more information - they are unsure of his blind status maybe? The paperwork and legwork for those will take up much of the next two weeks, I expect.

In the meantime, his new Braille goodies arrived today - including a way to keep socks matched! Who knew there was a solution to that out there all along?? So we spent the afternoon learning the alphabet (he feels like he about has that down already!), exploring abbreviations, and trying out his new reader pen. When you have 2500 books in the house, not having a way to read them is a real kick in the shins!

We are busy doing all that needs doing but really excited at what we're doing to move forward in a stronger position, and are so glad to get your messages and letters. He can respond verbally to texts now too if you are of a mind to send one! Check out the FB update on his page to see pictures of some of what we did today.
more to come ​​​​​

- Melissa

One week on the new drops
July 23, 2020
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Jeff's energy is coming back some now that he's come to the end of the antibiotic eyedrops and is now working with the steroid drops. With the help of our older sons, he has found ways to get back into the gym for some weightlifting, and has been able to go out with Melissa on excursions to the grocery store or on short walks. He feels like he can say he has about 10% of his vision back - but that does not mean as much as it might sound. At the periphery of his vision, he can see shapes, patterns, and colors. But nothing concrete, and still only light and dark colors directly in front of him. All the same, this is an improvement to work with so we are running with it. 

In the meantime, we're eagerly awaiting new materials to learn to read braille, and tools to help him better function in the world more independently. We have also begun working on getting tools in place to navigate the house more safely. You never think about little things like how well something is organized, or having handrails on the front steps as being so important until you need to use them to navigate the world without sight. He still has increased sensitivity with all of his other senses - what they say is true: Lose one of your senses and all the others become much more sensitive. It is like sending the brain into high alert all the time. On the plus side, good food tastes even better than it normally would. 

We have begun talking to Jeff's doctors with the VA and syncing up his increased medical needs with the care he receives from them, and are waiting out the next three weeks in anticipation of whatever changes will come next. We'll update again when the new Braille box arrives! 

Thank you all again for your continuing love and support. We would not be able to get many of the braille supplies, and safety tools that he needs without you all. 

~ Melissa

Phase two... and finding an unexpected allergy
July 20, 2020
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Last Tuesday we saw Dr. Benson and Jeff was put in a patch until Friday "at noon!" Thursday morning though, Jeff needed to take off the surgical tape because it felt like his skin was being burned.

As we took it off, I could see where he had gotten a chemical burn from the glue in the tape - in fact, it looked like someone had taken a hot iron and held it to his face! 

Back to Richmond with us so the doc could look at his eye and decide if we needed a replacement patch or if we could move on to steroids in that eye too. The doctor and hung this assistant both looked and said he is cleared to do the steroid drops! No more antibiotics woohoo! 

I finally got some answers (sort of) to some FAQs too - so, we do the steroids for a month, and continuing on until the whites of his eyes are white in their own. Once that happens, he'll be added to a surgery/transplant list. - as of right now, because of the shelter in place stuff, they are scheduling operations into Next October. That means we are looking at December at the earliest but more likely January-> April sometime. As to cost... the doctor is not the one to call for those answers, so I'll be calling the insurance company tomorrow as well as a lawyer about the contact lens solution. 

in the meantime he feels like he can see about 10% of what is around him because of regained vision. We'll continue to anoint him with the holy oil, and build strength up with a good diet, and his increasing ability to get back in the gym or take walks again. we are so glad for small steps forward.

Moving on from antibiotics and going Pirate
July 15, 2020
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Saw the doctor yesterday. He is pleased with Jeff's progress, but one eye is doing better than the other. They put him in an eye patch. We'd like to know: couldn't they at least spring for a cool leather pirate patch?? Or maybe offer them as something we could purchase? ? 

Anyway, it comes off Friday, and we begin drops in that eye too. The other eye will get steroid drops all this week. 

As to whether his vision is coming back "at all"? That is a relative term - so in terms of "at all", strictly speaking yes. It has returned enough in his peripheral vision to see that the kids have their feet on the furniture or have left toys on the floor - but not enough to see the details of *what* the toys are. Enough to remind the kids that Blind Pop can still call them to task though! ? 

We will not have any kind of timeline for corneal transplant surgery until at least six weeks or so, because we are waiting for the whites of his eyes to be white again. In the meantime, he is easing back into his gym workouts with the Big Boys helping, and keeping a super healthy diet so he is as strong as we can make him, inside and out. 

Pirate pic will be on my FB timeline. I don't see a way to post it here...


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