Where did it all start?

Four years ago, I suffered three grand mal seizures when my epilepsy, which had mostly been in remission for 23 years, suddenly resurfaced. It was early on a Saturday morning, and luckily my wife, a registered nurse, wasn’t at work that day. My spine was fractured in multiple places in my lower back, and I seem to have suffered a traumatic brain injury affecting my memory and concentration. It could have been much worse. My lungs were filled with blood and the paramedics had to give me an injection when I started seizing a fourth time in the ambulance.

With medication, the seizures have gotten much less severe, but I still have small ones every month or so. It took a few years for my condition to become this stable, and before then it was very disruptive to my work as an IT data analyst for a major hospital system. I eventually lost my job.

Mark wearing his ambulatory EEG headgear
Me wearing my ambulatory EEG

I’ve been without an income for two years and four months. I’ve applied to 8,000 jobs. That’s not an exaggeration for effect, that’s the rough number. Twenty-eight months averaging thirty days each with an average of ten job applications per day brings you to eight thousand, four hundred job applications. I know there have been days where my motivation has waned, and so 8,000 is about right. I apply to jobs all across the country and sometimes, outside of it.

I’ve been on 68 job interviews. That number I know for sure. That’s the number I’ve counted every day since May 2016. I’ve had zero job offers. That one is also for certain. Because of my memory and focus issues, some interviews go better than others. Most, however, believe it or not, have gone well. I simply wasn’t offered the job.

I work on art commissions in my small studio, and if you like you can often catch me live-streaming my work on Twitch. I do costuming and prop work for cosplayers who dress up as Star Wars characters for charity, among other things. It’s a small supplement to my wife’s nursing salary, but it’s not enough to keep ahead of the bank.

We’ve cashed out our pensions, we’ve spent our savings. Starting late last year we ran a GoFundMe asking people to help cover our mortgage for one more year so that I could have enough time to definitely find a job. Like, another entire year, there’s no way it would take longer than that, right? Well our year is up (minus the arrears we had to pay of about 3 months), and there’s still no job, and it’s looking very likely that I’m never going to be hired by anyone again.

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It’s Been Hard for a Long Time

Being chronically ill in the United States is difficult even when things are going well, and that’s as much to do with the cost of healthcare here as with the illness itself. I’ve suffered from Crohn’s Disease for my entire life. I’ve had epilepsy for most of it. My oldest daughter also has Crohn’s as well as a blood clotting disorder known as ITP, which is an unfortunate combination. Medications, treatments, doctor visits, are all expensive. In fact a very likely reason for my seizures in 2014 is that I had been going without my Crohn’s medication for years due to the cost at the time, which was $1,200/month.

Sarah with Izzy post NICU
Sarah holding Izzy after she came home from the NICU

People think of Crohn’s as only affecting the gut. In reality, while it’s focused primarily in the gut it actually causes systemic inflammation, especially when not treated. I spent several years not treating a potentially fatal disease because I couldn’t do that and support my family at the same time. We just didn’t have enough to do both. My untreated Crohn’s caused chaos in my body. Gut problems, but also joint problems, anemia, and severe dehydration, a trigger for my seizures.

My oldest daughter’s Crohn’s was difficult to treat and refractive to most medications. We eventually sought highly specialized care at Children’s Hospital Boston. It meant an expensive commute, more time off from work, and fights with our insurance company. Some of the tests she needed to monitor her medications were considered “experimental” and not covered. One particular bloodtest cost $460-750 each time it was drawn, every few months.

The day that my youngest daughter Izzy was born, my oldest, Sarah, was in the isolation ward of another hospital many miles away. My wife stayed with our new baby and recuperated. I drove back and forth between the two hospitals and hardly slept.  They thought Sarah might have an infectious disease, but in the end it turned out to be a rare reaction to an infusion medication they were trialing her on. Her hair fell out in patches and her body was covered in sores. Her hips and knees locked up and she had difficulty walking. She had been on the infusion medication because a few months before she had nearly bled to death, requiring multiple transfusions. Sarah still has sporadic “arthritis” from her medication reaction to this day, 9 years later. Sarah is 20 now and going to college for social work.

Sarah and Molly
Sarah with Molly the Berner, who left us this past June

Izzy was badly jaundiced at birth and the community hospital she was born in did not take her jaundice seriously. The concentration of bilirubin in her blood got so high that it crossed into her spinal fluid where it may have done neurological damage. She spent two weeks in the NICU after she became unresponsive on her third day home from her birth hospital. We’ve never gotten a straight answer on it from any doctor. She was later diagnosed with autism at age 3, but has no measurable symptoms of autism today. Likely, she suffered a brain injury from her jaundice but the hospital would not admit it. We paid for speech therapy, occupational therapy, specialist visits, and all of the associated logistics including travel, lost time at work, and so on. She was tested for everything, including hearing loss, because of her reduced interaction with people around her.

Izzy is 9 today, and seems mostly neurotypical, with perhaps a quirk or two. Also very friendly, extremely bright, and full of energy. She helps us get through this every day.

Izzy's artwork
Izzy showing off some of the art gallery in her room

There’s more, including the cardiac arrests that preceded my seizures, also likely related to untreated Crohn’s, but I feel like this is just too much to expect anyone to read. All of these hardships depleted our savings, then ran up our credit cards. We were very badly prepared for me to then take ill, nearly lose my life, and lose my employment.

Sarah's Clubhouse
Me, years before the seizures, assembling a play fort for Sarah when she was about nine.

I need these girls to be OK. I don’t know how to make sure that they will be. If I have one more grand mal seizure like I had in 2014, there’s a very good chance I won’t survive it. The physical damage they did is still with me. I’m only 41 years old.  I sometimes walk with a cane now. I can’t lift anything heavier than twenty five or so pounds. I feel fragile compared to how I did before the seizures. I still have very small “focal” or “petit mal” seizures from time to time, and there’s no way to be sure that another big one isn’t on the horizon. I continue to look for work, both through job applications and through my art studio, but I worry about what will happen if one day I’m not here. My wife Chris can’t do this by herself.

We got our “one more year” on GoFundMe this year, but employment never came. My most recent job interview was six days before this writing. Friends have sent me job listings, offered referrals, and helped pay for groceries at times.

We have no equity in our home. We were nearly foreclosed last year but got a modification with help from my wife’s family. Sadly,  that was only borrowing time. If we lose this home, we have nowhere to go. Rents are more expensive than our mortgage payment, not less.

My wife and I are introverts. We haven’t got many friends. We’re not involved in a church community. I’m estranged from most of my family, and hers can only help so much. We have no support network that can help us with a problem this big. We need people we can reach online, who don’t know us, but care enough to help us anyway. Are you one?

The only thing I have left is to ask all of you for help. We need 43,000 donations of $5 each to pay off this home and make sure that my girls will always have a place to live, that our colony cats will always have their caretakers, and that Wells Fargo can’t take this from us. Can you spare $5 for the chance that my girls might be safe? Can you share this with others who might?

Thank you so much for reading.

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Rescued ferals from our colony
Eleanor Rigby, Oswald, and Ferris