Freeport, Illinois — This is a little bit of the story of the last three years – how John’s life went from that of a young man overflowing with vitality to now – an agonized, pained, shell of his former self. He is dealing with a very difficult case of 2 types of Lupus, neither of which doctors have figured out how to treat, as well as how he has had an UNPRECEDENTED 11 EPISODES OF RECURRING SHINGLES on his face. (Updated number is 22 episodes). The day by day loss of life that he is experiencing, and the fall into isolation and depression due to illness, extreme fatigue and pain.
Lupus is a condition where a persons immune system attacks their own body (in John’s case, skin and organs) as if his skin and organs are a foreign invader. John’s Lupus condition has not been able to be treated yet, due to the fact that the usual treatment is to use methods such as chemo, or steroids to bring down a persons immune system. His immune system has to stay strong, due to the Shingles that keep recurring. The immune sytem has to be able to fight off the Shingles virus. Dr.s have already had to do scans to make sure the Shingles virus hasn’t entered his brain, which is a concern. He’s also had to undergo a Spinal Tap, which was met with complications and an additional hospitalization.
John’s now had 22 cases of Shingles, and since July, is hospitalized for treatment each time. It manifests on the left side of his face and causes excruciating pain. It has also affected his left eye and caused him loss of vision. This ordeal has Dr. Robert Geller puzzled, a man with over 50 years of experience in Infectious Disease.
In 2015, John was doing great… aside from a serious insomnia issue. He’d just finished college after years of hard work — often restarting classes that he’d been forced to drop due to illness — taking medical withdraw time and again. Still, he ultimately earned a double major at Columbia College Chicago — one of the top students in his class. He was excited about the future and ready to jump right in to pursuing his life-long passions.
When this began, John had told us that he “just couldn’t get any sleep” while attending his last couple years of school. That was an understatement! He moved home with us after graduation, to be a temporary stay, before heading off to California. But it didn’t take long before we realized how serious his insomnia was. There were times when he was awake for up to SIX days and nights without ANY sleep — and yes… I meant SIX! During long periods of no sleep, he would slowly slip into what I can only describe as a “zombie-like” state — on the edge of sleep, but talking as if a motor wouldn’t let him stop. He would speak very intellegently though, and sometimes explain things to us several different ways, as if he wanted to make sure we understood. He’d go back, lay in bed, try over and over to fall asleep, but to no avail.
I am at a loss for anything else to do to help John, to get his life back. We have maxed out our credit cards just to pay for his medications and many co-pays, as well as trying to keep our finances afloat. The doctors he needs won’t take his medical card. Our plan is to find insurance that is acceptable. He is down so low, he says he’d rather be dead, rather than deal with the pain he has and the hell of isolation he’s experiencing. He’s given his word that he’d never actually kill himself — the main reason, he wouln’t hurt those he loves, and can’t imagine the hurt for us to find his lifeless body. It’s devastatingly heartbreaking, just knowing he’s thought that way.
John NEEDS to get some treatment started so desperately. He needs hope. I’m praying he will feel good at Christmas for a change, and feel some hope and love. He has been so alone — even with Jeff and I here. ~ And speaking of Jeff… He is the only one who has been supporting our family. He hurt his back just before Thanksgiving, and the doctor has him on “Temporary total disability” — we are unsure how soon this will resolve. It seems more serious than his usual back strain — more like nerves and discs involved, and lots of pain. So… I’m carrying the household load alone. My Dr. believes I’ve developed a bleeding ulcer from all the stress! He wants me to go in for an Upper GI next week! One good thing with that… at least I can take a nap!! These issues are minor compared to John’s! We’re quite a bunch!
So – that is a very brief summary of the last two years, and John’s painful and frustrating ordeal. To tell you a bit about John – You’d never meet a nicer young man. Which makes it even more difficult to know that he is dealing with all of this! He is very loving and kind – a very gentle soul. He always puts others before himself. He loves animals and is one who will always rescue strays, even wild animals. He is extremely creative, and we discovered his artistic talent when he was about 3 years old. He drew a picture of Batman and Robin for his dad – and it was clearly much more than a normal 3 year old would draw.
I wish the whole world could know John, because they’d sure find a great friend in him, who could make them laugh, and smile, he has a great sense of humor.
While in college, John’s instructors, and fellow students were fond of him. He still holds the unofficial record at Columbia for performing in the most acting projects, at just under 100 by graduation. Everyone wanted to work with him. His acting was natural, and he took it very seriously. He had already filmed some indie movies, with Director, and close friend Ryan Ohm of Weird Life Films. The two worked together on several music videos for popular bands, and John starred in Ryan’s debut film “Finn and the Sea of Noise”. John’s career was off to a good start.
John has an incredible thirst for knowledge, and would spend all his time studying and reading — he would thouroughly “fact check” anything he was researching. At times it was investigation into the church, the Bible, religion. Other times it was laws, and lawmakers, government, history, and philosophy. He’d just as often become as invested in his painting or writing, incessantly grinding away at various projects due to a manic overflow of ideas. He doesn’t watch TV, but he loves music. I often wished he would just watch some TV and slow down. I’ve felt too much input, not enough relaxation was creating anxiousness. He is intellegent and hungers for knowlege.
Interestingly, that was the most attractive thing he saw in his last girlfriend. She could hold an intellegent conversation — of course, he was attracted to her beauty, but he found an equal in her. Dating for nearly two years in college. She is now on with her career, and has a major role on a hit TV show — there’s no doubt he could be as far with his career as well. As far as dating/ relationships, he missed all the fun of his teen years due to another rare illness — no proms, homecoming, football games, etc — he dated a handful of other girls while in college, but nothing else as long lasting or meaningful.
John has had no life for a very long time — no socializing — an extrememly rare phonecall from a close friend or two every so often. Two years of no dating, or meeting young ladies! All of his old friends are moving on in life… he is stuck, and keeps trying, but getting nowhere fast. He doesn’t do Facebook. He prefers personal contact in relationships. He had a dozen or so messages emailed to the hospital while he was in that were printed off, and they truly meant the world to him. Occasionaly he gets a card from our church that is passed around and signed, which reminds of the prayers said for him. He doesn’t get too many cards, or letters personally, and has been very isolated. He’s missed birthdays, holidays, family gatherings. Recently his childhood best friend had a baby — he hated that he couldn’t go to see the family. There are so many babies and pregnancies on both sides of the family — he may have to stay away, even if he feels up to going to a family event — due to chance of spreading shingles (in the form of chicken pox virus).
He SO DESPERATELY wants to have his energy back — to not have to walk with a cane, or feel like he has to lay down after a very short time of moving about our home. He SURELY doesn’t want to continue to live with his parents. What a complete difference from the livelihood of his Chicago life! He used to be very active, very social, and longs for the ability to do such simple things his body won’t allow due to this untreated disease. He is no longer able to engage in his studies due to mental fatigue. It’s very difficult for him to read, and he very rarely can gather enough stamina to paint or pick up a guitar. Due to his limited concentration, he even has a difficult time watching a movie. At this point, when he’s not in the hospital being treated for shingles, he lies awake in his room most of the day until he can sleep — only to wake up and do it again.
John Willis Benefit
Sunday, September 9 at 12 PM – 5 PM
Logan’s Bar & Grill
1805 S West Ave, Freeport
Source: John Willis Benefit Facebook event page.