CHAPTER 4: Pandemic Winter 2021 - Housing, Healthcare & Heckling My Own Heart

 

CHAPTER 4: Pandemic Year 2021 ~ Winter 

Housing, Healthcare & Heckling My Own Heart

So, to recap PY20 (pandemic year 2020), I languished in a COVID Homeless Hotel in the Spring/Summer 2020 as I learned the homeless outreach system in the State of Illinois does not actually exist to ever rehouse anyone ever; because there are too many corrupt “homeless outreach entities” grifting the government money for themselves, their bonuses and their own bigger and better homes.  Then, the janky nursing home I was prescribed to go to by the State of IL after a medical evaluation indicated I was in dire medical distress while struggling to breathe, walk and eat consistently nutritious food, failed to provide ANY therapies, services, medical attention and denied me even basic oxygen when it was ordered by my pulmonary specialist. Then because of those two catastrophic failures, I was nearly human trafficked and was denied any medical care at an actual hospital in Springfield IL, despite being there, in-patient, for a full two weeks.

I discovered a jarring and truly stunning level of corruption, fraud, waste and government grift at every level of those three broken (3) systems.  (See Chapters 1-3): Homeless system, for-profit Medicaid nursing home system and the mental healthcare system that is actually CAUSING - and not curing - America’s collective distress.  

With the help of a friend in Georgia named Riley, I then checked into a local hotel without a dime to my name as the State of Illinois STILL had failed to ever process my $17k in IDES Pandemic Unemployment.  I will never forget eating Portillos Hot Dogs as my food for Christmas Eve and Christmas Day 2020 as I pondered what to do about my dire situation.  I had no permanent housing, no ability to access any legitimate healthcare via IL Adult Pandemic Medicaid I was approved for in May 2020, and I was again struggling AGAIN with food insecurity. I was now, at least, close to an Aldi so I could use my Pandemic EBT to get some food and eat in the hotel. 

But I needed a plan - and fast.  This hotel is ordinarily $4k per month. My friend Riley is helpful and generous especially in times of crisis - but not THAT helpful. Few people are. Fortunately, for me, we were headed into January (a fully dead month for hotels in Central Illinois), the Pandemic was still raging on and nearly no one else was staying at this hotel.  I was able to secure the biggest double suite that was handicapped equipped and was closest to where I parked my car. This was a godsend in terms of needing my wheelchair and help maneuvering around with all of my many medical maladies.  

Most nights it was just the hotel Manager and me there at the hotel.  His name was Jonathan. He lived there at the hotel but hated Midwest Winters.  I spoke with him a lot about his dreams and ambitions, what he thought of Springfield IL generally (he agreed: Avoid Memorial Hospital unless you want to die there!) and his myriad experiences working at this particular hotel.  He told me it was a franchise and the owner refused to spend any money on upkeep and was, broadly speaking, a terrible franchise owner and boss.  From the looks of things and for the LEVEL of hotel this hotel allegedly was, Jonathan was right - the place needed major updating and renovations. Badly and quickly.  

Because there were almost no travelers/other guests besides the occasional OTR truck driver staying one night here and there, Jonathan and I came to an agreement on the cost for me to stay long-term at the hotel.  We agreed on $650.00 a month.  Oh. My. God. That was so incredible of him to work with me that way and help me in that way - given the usual and customary price of this hotel. I didn’t have $650.00 but I knew that was way more affordable, per month, for Riley of Georgia to be able to continue to help me, if needed. 

And because Jonathan helped me, I helped him right back in return.  Because that’s just who my father taught me to be.  If someone helps you - you should go out of your way to help them in any way that you can. So, I penned a letter about my observations of him as a Manager there at the hotel property: how he was always professional, amiable, courteous, considerate and was the kind of employee that really went the extra mile for guests just because he enjoyed making the guests happy.  It ultimately became a three (3) page letter that I then sent to his boss, the franchise owner, but I also sent it to the hotel Corporate Management too.  I genuinely wanted them to know what a gem they had in Jonathan.  The service industry can be brutal as can the hospitality industry and people more often take the time to complain and write scathing online NEGATIVE reviews rather than compliment a hospitality worker.  I was determined to make myself useful and helpful to Jonathan since he had done the same for me. 

So with my four walls secured on a month by month basis, I then set about addressing my healthcare and nutrition needs.  I was now in Springfield IL - as a FORMER resident of affluence there yet a CURRENT person in need there; and so I put calls into EVERY available agency that helps the homeless, people in need, helps with clothing and food, medical care, medical transportation etc I was technically not legally or medically allowed to drive because of the loss of consciousness episodes I was still having (remember I had one while driving near that Caseyville COVID Homeless Hotel) and I did not know why.  I suspected low blood oxygen levels from my post-COVID lingering pulmonary issues but my GP who sent the orders for me to go to that janky nursing home thought it might be low blood sugar from lack of food OR a lingering symptom from my TBI.

   I had not previously EVER been on Medicaid in my life but I had to enroll due to the Pandemic in May 2020. I had no idea how it worked, or didn’t work, and just assumed it worked like every other insurance I had always had with my law firms.  Oh grasshopper, how naive and stupid you were back then….My level of being GROSSLY UNINFORMED of just how horrendous Illinois Medicaid is for adults will be a RECURRING THEME throughout this Memoir so file that nugget away for right now….

I called Aetna Medicaid Member Services to be assigned a new GP to me in the Springfield IL area since I now “lived” there - even if it was only a hotel.  I told them I refused to see any doctor associated with Memorial Hospital in Springfield or the entire Memorial medical group. The representative said “Ok.” And she promptly picked a provider who was with SIU School of Medicine.  Great, I thought. I teaching/learning hospital like Barnes Jewish in St. Louis.  That HAS TO BE an improvement over Memorial. I quipped with the Medicaid Rep that the reason their name is “Memorial” is because your family will be planning YOUR MEMORIAL if you are ever a patient of Memorial Hospital. She laughed nervously but said “Oh that’s funny!”  Funny tragic more than funny ha ha but so it goes.   

I went to see my new SIU GP only to learn that she was about 26 years old and only a LPN.  I say “only an LPN” because my track record with YOUNG LPN females was not good thus far in life.  And this one was no different. 

On the day of my appointment she asked me if I had any childhood symptoms of my Huntington’s Disease.  I thought this was an odd question to ask because most people who have juvenile Huntington’s Disease never live to be 50 years old.  So I told her “No, I was tested when I was 32 because it ran in our family and that I did not start showing any symptoms until the past year in 2020 and that because of those symptoms I was now considered “pre-symptomatic.”  She looked at me oddly and then said “Well you probably just don’t REMEMBER having symptoms in childhood as most people with autism do show signs in childhood.”  

I’m sorry, what did you just say to me? My brain was struggling to keep up with her bizarre comments and questions…  

I replied: “I don’t have autism. I have Huntington’s Disease.” 

She said: “Oh, I know, but since it is on the spectrum I just wanted to know how long you have noticed your autism symptoms.” 

I looked at her incredulously and then stated: “Huntington’s Disease is NOT on the spectrum.   It is a genetic, neurodegenerative condition that less than 1% of the population has.”  

Like jeez, lady, haven’t you ever seen even 1 episode of Dr. House on tv? Huntington’s is almost ALWAYS his FIRST guess when they don’t know what is wrong with a patient. (I loved that show for so many reasons but for giving those of us with Huntington’s some visibility and acknowledgement in society is why I loved that show most of all.)  

She looked aghast.  Then she looked around the room nervously.  Then she said slowly “Well, what did you want to be seen for here today?”

I told her I was trying to establish primary care in Springfield so that I could be referred to a neuropsychiatrist because Huntington’s patients are generally followed by a neuropsychiatrist.  And that I required a number of specialist referrals for orthopedic, urology, gynecology, neurology due to all of my current ongoing issues that had been left untreated for nearly a year because of the Pandemic (and Illinois’ failed Medicaid, for-profit nursing homes).    

She replied: “Oh, IL Aetna Medicaid does not offer specialists like that.  You won’t get to see any of those with Illinois Medicaid limitations - especially since you have Aetna Medicaid.  But I can prescribe whatever medications you generally require. 

Um….there is literally NO WAY I am going to allow some uninformed newbie who has no idea what it is like to be older and have your body betraying you in new and different ways every other day due to middle age, Huntington’s, my TBI or who even knows why - be my doctor?  Sorry not sorry -  but I needed a much higher level of care - especially given all of my many CURRENT medical issues: TBI, shattered left knee, reduced pulmonary function from post-COVID, detached retina, sudden onset profound deafness, malnourishment, neurological and urinary issues.  There is NO WAY I was going to allow this frighteningly uninformed LPN to be my PRIMARY CARE medico. Nope. I’ve seen this rodeo before and it only ends in horrid care or no care at all.  

When I told her ALL OF THIS she said “Well, I can write you a prescription for Zoloft.” 

What?

Oh, because I’m clearly JUST DEPRESSED and clearly not this medically unwell. 

I replied simply: “I’m sure your bank account would love that prescription kickback you get for writing that Zoloft Rx that patients do not need and did not request but that’s a hard no from me. And by the way, SSRIs are strongly contraindicated for Huntington’s patients for a variety of reasons.”

She looked stunned stupid - because she was - and just started muttering and ummmming and ummming some more.

Then she said meekly: “Well I only offered because it is the number one prescription being filled right now because of the Pandemic.  Literally ALL of my patients are on it right now.” 

Gee, how to deconstruct that statement. First, she just erred with a massive HIPAA Violation regarding her other patients to me and also - I don’t want prescriptions I do not need just because other patients are taking them.  

I looked directly at her and then said: “This is NOT going to work for me.  This is not a good fit.  Fill my prescription for my heartburn medication and my 600mg ibuprofen for my TBI headaches, send those to CVS pharmacy and I will get a different GP Primary provider who is actually an informed medical physician and who actually has a clue what Huntington’s Disease is.  Goodbye now.”  And I took my leave of her 

So many patients never realize you have the absolute RIGHT to do this.  Furthermore, so many marginalized ILLINOIS MEDICAID patients do not realize they have the absolute right to do this: say no to such CRAP, uninformed, low-rent, craptastic care and DEMAND better.  But you have to know how to be a good medical-legal ADVOCATE for yourself; otherwise the horrible Illinois Adult Medicaid System will just swallow you up whole and you WILL die.  Fortunately for me, and unfortunately for Aetna Medicaid, I had YEARS of medical-legal advocacy under my belt.  Aside from my work in the law, I was my father’s medical advocate.  Do you think he lived to be 90 just on his stunning good looks alone? No. It was because I was with him at every appointment and every hospitalization reading his chart, taking notes, demanding the care that he needed and deserved. But also, my father was CONVINCED that a finger of Irish Whiskey once a week during the Winter guaranteed a long life. I used to make endless ridicule of him for this belief but now I am not so certain the man wasn’t absolutely correct. My care of him may have had nothing whatsoever to do with his good health and longevity.  It may have been the moderate amount of boozy whiskey from my family’s Irish kinfolk that gave him such a long, happy and remarkably healthy life.  My father died of a pulmonary embolism at the age of 90.  He had a 30 year retirement where he wanted for nothing. Living the dream, indeed…     

But anyway, back to the mess that is adult Medicaid in Illinois via Aetna.  For purposes of being <legal and technical> here, please know that whenever I say “IL Medicaid” or “Medicaid” etc I am referring SOLELY to adult Aetna Medicaid in Illinois as I have no basis of knowledge and experience regarding the other Medicaid Providers in Illinois which include Molina and BCBS to name just two others.  Any comments or allegations I make regarding Medicaid are to be inferred as referring ONLY to Aetna Medicaid in Illinois.  (Although, after what I know now sitting here today in 2023 about Aetna, broadly speaking, you will never convince me my experience is not typical of Aetna Members across America. For I cannot now UN-KNOW what I now know about the abject avarice of Aetna.)       

But after that disastrous appointment with that SIU LPN, I again called Aetna Medicaid Member Services and asked them to provide me a NEW GP as the one they recommended was pure garbage.

Oh. Sorry. I meant to say “that she was providing appallingly awful medical services that fall far below the standard of care.” 

Now, this is when I <started> to understand that there were M A Y B E some issues with Medicaid in Illinois.  Because the Aetna representative proceeded to give me one female LPN name after another - because THIS TIME I researched each while I was on the phone with her on my Chromebook and realized she was saying “Dr. Simpson” only for me to look that provider up and determine they were not a doctor and were just another LPN.  

I finally asked her straightaway “Why do you continue to give me only the names of LPNs instead of genuine medical doctors as I have requested of you?” And she replied: “Well, they like us to refer members to LPNs because it costs Aetna less per office visit.”  Oh. I see.  Well as long as you’re trying to save Aetna Medicaid a few bucks while compromising my quality and access to competent care - that seems perfectly legit. NOT! 

I then told her to find me any available older MALE physician MEDICAL DOCTOR who was accepting new patients.  She told me it would take her some time to verify from their online database who was actually, actively seeing Adult Aetna Medicaid patients.  I told her that was fine that she could call me back when she found one.  

The Aetna Member Services Rep called me back four (4) hours later and told me that appointments with any REAL MEDICAL DOCTOR would be months out due to the backlog/lockdowns of the Pandemic.  

“Exactly how far backlogged?” I asked

“First available with anyone is August 2021” she responded.

That was eight (8) full months away and I was in a medical crisis… 

What in the actual FUNCTION? It’s as if America just BROKE during the Pandemic and never recovered.  

I told the Aetna Rep to schedule me in August and we would just hope that I wasn’t dead by then. She laughed and cheerily hung up which, to me, seemed a tad insensitive but welcome to the Asinine of Aetna, too.

So what now?  Housed with some food but no medical care available. 

About this time, the Pandemic Nurse Team with SIU contacted me.  This was a great resource during YR2020/21 of the Pandemic in IL; but it sadly lost all funding in April 2021.   Anything that helps the average person attenuate their suffering, strife and daily near-death experiences simply cannot be funded in Illinois.  Are you feeling me, fam? 

Anyhoo, this was a Pandemic Resource assembled where nurses traveled to shut-ins and others needing community or medical services and did what they could given the limitations of the Pandemic.  These nurses brought me food, took my vitals and most importantly - connected me to actually HELPFUL mental health services and respiratory care.  Sitting here today in 2023 as I write/edit this Memoir, I can tell you that I absolutely would have died were it not for the SIU Pandemic Nurse Team.  And were it up to Memorial Hospital in Springfield, I would have died in the gutter near their hospital after never being MEDICALLY treated.  

So the nurses came and they brought food which helped immeasurably.  One nurse in particular, Alison, realized I needed respiratory and pulmonary help - fast - far sooner than Aetna Medicaid was going to provide by AUGUST 2021.  So, she connected me with the Pulmonary Clinic at Barnes Jewish in STL and from there - I found my ANGEL.  It is REALLY RELEVANT AND IMPORTANT that you realize what is happening here fam: I had to actually access care outside “the broken Aetna Medicaid System” and somehow arrange for it privately because Aetna Medicaid was a full-tilt failure in terms of GP care or specialty care appointments in Pandemic Winter 2021.  It would take me a full additional YEAR for me to realize exactly what was the dysfunction at Aetna.  For I had never before been on Medicaid.  I did not know what I did not then know.  All I knew was that Aetna kept failing me at EVERY turn and I realized AGAIN - unprecedented times call for unprecedented ACTION to save your own life oftentimes.    

So my Angel was a respiratory therapist on maternity leave from Barnes Jewish Hospital but bored out of her mind when not tending to her new baby.  So, she managed to set me up with Zoom Respiratory Sessions with her 3x weekly.  She was a godsend, a miracle, a lifeline when my life most needed a hand to reach for mine in the dark and say “I will help you.” And help me she did. She asked that she remain anonymous because she is a devout Christian and wanted her gift of charity to me to be anonymous.  So all I can tell you is, Fam, is this: Barnes Jewish Hospital literally saved my life in Winter 2021. They are a teaching/learning hospital and they have some of the most profoundly gifted medicos I have ever met in my whole life.  But more than that, their employees seem to genuinely and truly care and carry compassion in their heart for their patients.  I find that very rare nowadays in almost all industries and that’s just a sad fact, I think, of the Pandemic-fatigue we all now live with daily. 

LONGHAUL COVID TREATMENT: I know NOW, in March 2023, there are many schools of thought on THE BEST treatment but this was January 2021 for me. People were JUST BEGINNING to utter the words “I may not have fully recovered from COVID” and there were no “Post-COVID Longhaul Clinics” as there are now.  And the medical community simply did not know what they now sort of know about the condition.  Which is a really long way to say: my respiratory therapist Angel did the best she could under very difficult circumstances.  

She had the local SIU Pandemic nurses get me a constant and regular supply of rescue oxygen, an oximeter to gauge my blood oxygen levels (she suspected wildly crashing blood oxygen levels were the cause of my loss of consciousness episodes) as well as a heavy duty air purifier which I could pour eucalyptus and mint oil into.  I know that might SOUND crazy but all I know is that when I struggled to breathe, pouring that oil combo into the air purifier IMMEDIATELY HELPED.  I became less reliant on the rescue oxygen.

A WORD ABOUT INHALERS: After a really unfortunate “adverse medical event” with Albuterol and Bronkaid in August 2020, I refused ALL INHALERS after that as a treatment I would consider.  They all make me an insomniac. And the Bronkaid, which is only available behind the prescription counter as it is the active ingredient in methamphetamine, made me have significant memory impairment, inexplicable rage with severe agitation and symptoms of constant hypervigilance.  So, when the two were prescribed to me together in August 2021, it was the official “medication adverse event” Centerstone had no idea how to handle.  

Furthermore, the “fine print” on the inhalers will tell you that use of those inhalers will create a long-term dependence on those inhalers to breathe.  My dearest friend, Elisha, contracted SARS1 in early 2003 and consequently became permanently disabled with respiratory/pulmonary issues AND lifetime dependence on inhalers to breathe.  So any and all inhalers or Bronkaid were a hard NO from me.  When you tie the hands of the medical professional trying to help you so tightly and remove the most commonly relied upon tools in the toolbox to help you, that medico must then think OUTSIDE the box for how to help you.  And she did.  

I realize the CURRENT thinking on longhaul COVID is to rest constantly and not to tax yourself.  But Angel’s thought process was: we must tax your system as much as possible in extreme circumstances so that it can regain function under ordinary circumstances.  February 2021 was one of the snowiest we have had in Central IL and she told me to literally go walking IN THE SNOW every day - for as long as I could endure it.  Her thinking was: expand my lungs via cardiovascular stress and get my lungs conditioned to FULLY working again.  For it had been almost a year since I had taken a full, deep satiating breath that felt like I was actually breathing.  Angel also taught me to sing.  No, not VOCAL lessons but rather, the type of breathing required for high octave “Mariah Carey” type songs/singing.  When you sing those songs, standing up, you use the full capacity of your lungs and chest to sing.  In fact, some of the singing even comes from your stomach region and THAT was how high and deep she wanted me to go.  Angel also taught me to do “belly breathing” and other breathing exercises dozens of times per day.  The singing part was funny because let me tell you straight up: I cannot sing on key to save my life.  But Angel insisted THAT did not matter.  We were going for the ‘physicality of singing’ and not the actual beautiful result of singing. Okay…

So, I walked. And walked. I remember walking, some days, in thigh high snow.  You may ask how a Huntington’s patient in and out of a wheelchair was able to walk in the snow? Well, it was precisely BECAUSE of the snow that Angel thought it was safe for me to walk.  Because IF I fell, I would fall into the softness of the snow.  She warned me to start out slow, walking only to my car and back twice the first day. Then build up.  And by mid-February 2021, I was the crazy girl walking in thigh high snow all around the whole hotel each day, multiple times per day.

And when I wasn’t walking I was singing.  One of my favorites is Hallelujah by Kaylee Rodgers.  Gosh but could that little Irish girl sing the high notes.  So I sang WITH HER and with Mariah Carey and many favorite songs from the 80s and 90s that required full vocal range.  I sang and I did my breathing exercises.  And I walked.  I was persistently relentless with this rehab work as I am in every serious undertaking I do in this life.  I was determined that if I kicked COVID’s keister, I could kick post-COVID longhaul syndrome too. Because as my Dad taught me: “When life knocks you down 27 times, you get back up 28 and keep swingin, girl..ya hear?” Loud and clear, Dad…  

I’m not going to lie.  It was grueling, exhausting, wet, cold, insufferable and just too much some days.  But I did it anyway. I did it with legs shaking, lungs coughing, body aching.  I did it even when the urge to just sleep in bed all day was SO STRONG because I sometimes just did not want to have to struggle SO HARD just to breathe.  But one thing I had already learned in this first-time homeless journey of mine: If I wanted a return to something closer to NORMAL, that would NOT happen with me laying down hoping and wishing I felt better.  I had to focus on the way things were and work tirelessly until things changed for the better because merely hoping and wishing negates concrete action. And failure to act in such a dire circumstance too often leads to a velvet-lined coffin.  And I did not come this far, to only come this far.    

 Sleeping equals dying and walking/singing/breathing exercises equals: maybe living a normal life again someday.  So it simply had to be done.  And besides, I couldn’t let Angel down by slacking or not engaging the process when she was so kindly donating all of her considerable medical expertise and time to me.  

Also during February 2021, I began to realize two dire awful things.  The first was: the housing situation was actually WORSE in Springfield IL.  The local homeless shelter Contact Ministries did an intake interview with me for over an hour in January 2021; but the caseworker warned me that the wait for affordable, handicapped housing in Springfield was 7-10 years long.  Sitting here today in 2023 writing this Memoir, I have only moved up a few dozen spots in two years time.  I will NEVER find affordable, handicapped housing because Illinois specifically and America, in general, has an affordable handicapped housing crisis right now.  

Because of the acute nature of NO AVAILABLE HOUSING FOR YEARS in Springfield, the folks at SIU assigned some “Resource Team” of really young medical students to attenuate my personal housing crisis.  I’m sure they meant well but after I told them I REFUSED to enter another nursing home, they were completely out of ALL ideas.  And these were the kids who were supposed to have all the answers on the “really tough housing cases to solve.”  Color me not encouraged.  I told them I was actually doing FAR BETTER with remote medical therapies via Zoom, regular nutritious meals from the pandemic nurses and living in a handicapped hotel room and was making more progress in two months THERE than I ever did in that janky, lethal nursing home back in the MetroEast who offered me no therapies and essentially starved me to death.  That’s the problem with really YOUNG caseworkers being assigned to older folks struggling with housing insecurity due to disability: the young kids just don’t get it.  Their youth makes them THINK anyone over 40 belongs in a nursing home to just go die.  And most people OVER 80 that I know will absolutely do ANYTHING to avoid such a fate as a nursing home - so why would a 40 year old want it?  So, the fact that they just “quit my case” after I refused another lethal, Medicaid nursing home speaks for the failure of this particular Pandemic Program.  They lost funding in the Summer of 2021 and that’s unfortunately, in my observation, a GOOD thing.  Don’t fund Programs that simply do not work and show no tangible or substantive results.  Now the Pandemic Nurses Team that went out into the Community to help people like me? THAT PROGRAM needs to be continued FOREVER for any American in need. 

And it was a really good thing that my “outside the IL Medicaid system” medical care was going so well with Barnes Jewish because as January and February 2021 wore on my second dire realization was that Aetna as a Medicaid provider in IL for adults is a toxic dumpster fire of dysfunction.  The abject avarice and incompetence of Aetna simply cannot be overstated by me here.  One particular day in February I had three appointments scheduled at SIU Medical in Springfield and Aetna Medicaid Transportation just failed to show. Because I had experienced loss of consciousness in the past 6 months, I was LEGALLY not allowed to drive.  I could drive across the parking lot to Aldi to get groceries but I could not drive across town and navigate complex driving and parking tasks.  And with Aetna leaving me in the literal ditch that day, I lost access to 3 critical appointments.  I eventually rescheduled them all and had to rely on someone from Reddit paying for a private taxi for me to get there and get back.  AGAIN FAM: Note that I had to GO OUT OF THE POVERTY SYSTEM of Aetna Transportation and acquire transport privately and pay for it privately. I ask you to be mindful of these systemic failures because they WILL BE a recurring theme herein. Waiting on Aetna Medicaid Transportation to ever get you to any appointment, which is A BENEFIT THEY ADVERTISE THAT THEY PROVIDE, is a complete waste of your time. But these repeated failures that FORCE one to go outside of Aetna and pay or somehow access care/transport privately ACTUALLY BENEFITS Aetna because then they get to make the $91.4 billion dollars in profits they made in 2022.  America is fully corrupt and the poverty systems designed to help those in need in America are run by sociopaths of the pathocracy in America who only grift those government dollars for themselves and THEIR own bonuses.  Actual care and transport rarely trickles down to those members Aetna Medicaid is supposed to support and treat.    

So, I was REALLY fortunate and blessed to have received the free and compassionate pulmonary care that I did PRIVATELY- outside of the system and away from Aetna Medicaid- to help attenuate my ongoing shortness of breath, my fatigue and my fainting episodes that is now associated with CLASSIC Longhaul COVID Syndrome.  Remember: I had my first in my lifetime case of any pneumonia, let alone bilateral pneumonia, with my nearly fatal case of COVID in March 2020 so my lungs endured massive damage.  They needed healing, restoration and recuperative therapies and fortunately for me - that’s just what I received.  

But as the housing crisis dragged on with literally zero available affordable housing in Springfield IL for a handicapped person, things began to seem beyond bleak.  I obviously could not live in this hotel for 7-10 years waiting on affordable, handicapped housing and yet there were no options choices or alternatives.   

I called Tonya with Contact Ministries who did my Housing Intake Assessment back in January and she  told me of a woman she knew who “privately” helps other women find housing - especially women who are victims of domestic violence.  I was intrigued.  So far, every time I went OUT OF THE OFFICIAL AND FAILED SYSTEM DESIGNED TO HELP, it seemed to work for me.  I had not let Memorial Hospital allow me to die in the frigid Christmas of 2020 in their gutter and I had found restorative and very helpful medical attention OUTSIDE THE MEDICAID SYSTEM. So, I figured - why not talk to the lady and see how it goes.

I reached out to Eve who ran her own nonprofit called Armor of God. Tonya told me that Eve helped house those whose “housing cases proved too complex for all the “experts in the housing outreach system to help.” Great! That was exactly me.  And the fact that Eve allegedly understood the nuances of housing for survivors of domestic violence was also an advertised bonus of utilizing Eve, per Tonya.     

So, I called up Eve and we had such an encouraging initial chat.  She told me her own background and how she had come to want to do this type of work. As she told it, she had been human trafficked while at dinner with her husband and was “lost to human trafficking for nearly 10 years” and suffered all the horrors one might imagine that go along with such a horrific fate.  She told me that her captors forced her to do drugs so she would become addicted and more willingly have sex with all the johns in order to get MORE drugs.  She told me that for her first two (2) weeks with her captors, they literally kept her tied naked to a bed, injecting her with pure heroin every few hours.  She had no history of drug abuse, she said, and would not even take an aspirin when she had a headache prior to being sex trafficked.  But after two weeks of forced IV heroin injections, she was a full tilt addict.  I will spare you the rest of her story but I’m sure you can  imagine it was truly horrifying. 

She finally escaped the human trafficking after ten (10) years she said because she “aged out” and they did not want her anymore and they essentially “let her go” the day she decided to run for it.  She got to the police who called her husband only to find out that he had been remarried in the intervening ten years and had no interest in picking her up at the police station even.  Just Wow.  So she called an old friend who came to pick her up.  And she began life anew in her hometown of Springfield dedicating her life to helping other women escape human trafficking, addiction and domestic violence.   

As I listened to her story I was admittedly riveted but also horrified and maybe a little skeptical of her full story.  This woman was OLDER THAN I WAS at the time.  She said she had been “kidnapped into human trafficking 20 years prior” which would have put her easily at 40.  I’m not saying that 40 year old women do not get sold into sex trafficking but I did wonder why her?  Especially when she was allegedly with HER HUSBAND when it happened? Why not someone 14 or 24 - and some woman who was all alone and without a husband in tow? But I have discerned that there is no REASON or LOGIC to be found with the monstrous predators who engage in human trafficking - sexual or otherwise - so I kept talking with her. 

She mentioned that she had 1 house in her nonprofit “Armor of God” and only 1 other woman living there named Wendy and it was a 3 bedroom home.  She said Wendy was “in recovery” and “fully sober” and that Wendy was then 6 months pregnant.  Wendy was 40 years old but had had 9 previous children taken away from her by the State due to her lifelong drug addiction.  But since she was now older and wiser (40), she convinced Eve that she was fully ready with THIS BABY to be a permanently sober mother to the child.       

This was when my first internal inkling of “maybe not?” started to emerge with Eve.  After what happened with my own addict niece stealing all of my belongings to hock for drugs while I lay dying in ICU of COVID in March 2020, I did not want to be the nearest “collateral damage” if Wendy failed at her sobriety.  And I most assuredly would be exactly THAT as her roommate/housemate.  But I tried to keep an open mind and Eve kept insisting how the two of us - Wendy and I - would be so perfect together because we were both so similar.  That <part> of Eve’s pitch was peculiar to me because aside from both needing a place to live and both being generally older, I wasn’t sure what we had in common at all.  I have NEVER done drugs but had previously worked in a non-AA Substance Abuse Recovery Center in Georgia and I never had children of my own.  

And I wasn’t thrilled with the thought of a newborn screaming all night either but I tried to be POSITIVE about this prospect because - after all - beggars can’t be choosers.  And THAT right there - that DESPERATION MINDSET - that is what makes bad things happen to otherwise good people trapped in the broken homeless system.  NO OPTIONS/CHOICES means that <most people> literally jump at the first and only thing offered to them.  That desperation mindset is what gets people killed or “permanently missing” and guess what? Literally NO ONE is spending any time or resources looking for a missing homeless person.  That’s just the truth that it is in America.     

I wanted to do my own due diligence on Eve’s house and her organization “Full Armor” so I got the address for “the safe house” as Eve kept calling it and decided I would go there  during daylight hours.    

Eve knew my safety from my stalker former landlord was of paramount importance to me so she just kept stressing how “fully surveilled” the home was and how she had security cameras everywhere.  And THAT seemed encouraging to me about this housing prospect….

But to say that I was fully unaware that such “slum” areas of Springfield IL even existed the day I first visited this “safe house” would be a tremendous understatement.  Because prior to the Pandemic, I had lived in the more affluent part of West Springfield IL.  This street was the kind of street where NO ONE wants to live: it’s where tragic people leading sadly tragic lives just < end up> and likely die of some type of violence.  It was the kind of street and neighborhood where iron bars are on every window and door and I literally watched three (3) drug deals go down right in front of me in my first ten minutes parked in front of the house.  There was litter everywhere and crushed tallboy beer cans dotted the landscape.  I sat there thinking that if this neighborhood was this worrisome during the daylight, I absolutely did NOT want to see this place at night.  

Eve had warned me not to show up “unannounced” or “unplanned” so I did not go to the door and introduce myself to Wendy.  We had a Zoom Meeting with all three of us scheduled the next day so I just drove around the neighborhood and grew increasingly more alarmed.  I saw more cop cars in THAT neighborhood in that hour I spent there that afternoon than I EVER had the entire time I lived in West Springfield, pre-pandemic.  That’s always a BAD sign when any neighborhood is heavily surveilled and heavily policed.  And being triggered by law enforcement - I was already in the throes of a full blown panic attack by the time I made it back to my hotel.

Despite my highly awful impression of Eve’s “safe house”, I resolved to keep my commitment and speak with Eve and Wendy together.  So the next day we all met on Zoom and right away I knew we had ANOTHER major problem.  Given that Eve CLAIMED to be in recovery herself from being sex trafficked, it was absolutely astounding to me that she seemed to be fully unaware that Wendy was still obviously and actively abusing drugs six months into her pregnancy.  I could see it - in her simultaneous listlessness and cranked up nervous energy and super fast talking.  And she had massively dilated pupils, open sores on her face and she could barely track and pay attention to the conversation.  Also, for a woman six (6) months pregnant, she could not have weighed 100 pounds. 

In speaking with Eve privately after our Zoom, I asked her pointed questions about Wendy and how sure she was that Wendy was sober.  She became evasive yet combative and insisted to me that Wendy was fully sober.  I asked her if she drug tested her weekly or regularly and she admitted that she did not.  

I then asked if Wendy would need rides to medical appointments and the grocery store etc IN MY CAR WITH ME if I lived there.  I asked this specific question because under the current American system of drug forfeiture property laws, if I get pulled over and Wendy has meth in HER possession, I lose my car.  It simply doesn’t matter if I have no knowledge of her possession of the drugs on her person at the time.  I could NOT lose the only remaining possession I still had - my car - because of someone else’s problems.  

That’s when Eve said “Oh, you wouldn’t be able to have your car there.  That would draw too much attention from local law enforcement to the house seeing an UNFAMILIAR car parked by the house.” I was stunned. Exactly when was Eve planning to tell me THAT little nugget of this plan?  And furthermore, if it was “a safe house” for women of domestic violence - don’t you WANT law enforcement checking in regularly to make sure we are okay? Why was Eve actively trying to keep the cops AWAY if this was a legitimate, religious nonprofit she ran trying to keep women safe? 

I asked Eve “Where would I park my car while I lived there if not there at the house?” And she replied: “Oh, I know lots of people in really rural parts of IL with farms - I would park it somewhere at one of those places.  I come and I take Wendy to the grocery store once a week. I would take you, too.” 

I’m sorry - what did you just say to me, lady? So, your plan is to lock me in a house with an active meth addict I don’t even know who is actively using drugs - which you pretend to know nothing about - and then you plan to take my car away (read: my autonomy and independence) from me and park it in some unknown to me rural part of IL; because my car would just draw unwanted police attention to the “safe home?”  

Say WHAT? This was full-tilt BONKERS. 

The other thing I noticed was Eve spoke a lot about Wendy’s baby.  She repeatedly said how she just could not wait until the baby girl was born.  Eve had two foster sons and she kept commenting on how eager she was to have a little girl.  I thought her obsession with Wendy’s baby was a bit oh, I don’t know…obsessive? I also Googled Eve’s organization and could find literally NOTHING on it AT THE TIME in March 2021.  It’s as if it did not even exist.  But then - Tonya with Contact Ministries had told me that Eve did this “Full Armor Charity” privately and “under the radar” and helped the truly hard to help housing cases.  But if that were true WHY did she only have 1 beat up property in a rundown part of town that she likely bought for $5,000? I began to seriously wonder about Eve.  And Wendy.  Was she even TRYING to be sober or was her alleged sobriety just part of the ruse to get some other unsuspecting roommate in that house? I did not know and what I did not know about this situation frankly terrified me. 

 I told Eve I would think on it for a day or two which, incidentally, really seemed to annoy Eve. She was clearly irked at my hesitation and many questions and very much bothered that I wasn’t eagerly already moving all of my belongings there.  I went back the next afternoon to the “safe house” and parked about four houses down and just watched the neighborhood vibe and scene.  Wendy and I had traded phone numbers during the Zoom call so I dialed her up.  She answered and I invited her to lunch.  She said that she couldn’t go because she was having morning sickness and quickly hung up the phone.  That was fine if she didn’t want to do lunch but you think she would ask if I wanted to stop by and take a look at the place.  She did not.  

Then, not fifteen minutes after we had hung up, I saw Wendy exit the house and walk around the corner from the house - out of view of the cameras at the house.  I followed at a distance in my car and watched her score drugs from a neighborhood guy I had seen selling drugs the day before.  Well, THAT removed any doubt I might have had about my “addict assessment via Zoom diagnosis” I had made of Wendy.  So she rebuffed my offer of lunch so she could sit in the house and do drugs instead.  Very troubling.  

So the next night Eve called me and asked if I was ready to move into the house that weekend because she had “guys” ready to help me.  I told her as gently as I could that I did not think it was going to be a good fit for me but that I truly appreciated her offer of help.  

Upon hearing that I was declining her “generous offer of housing help at her alleged safe house” Eve went full-tilt bonkers ballistic she-bat enraged at me.  At first, I tried to tell her it was because I did not want to live where I had to forfeit my car.  But she started making fake accommodations like “oh I could bring your car to you every once in awhile - it just can’t be parked there all the time” and “you won’t need a car because I will take you anywhere you need to go” etc And frankly, the more she did that the more I became FIRM in my refusal.  

She did not like me asserting my independence or my own agency and my own autonomy and started saying things like “Who else is going to help you? Nobody.  I’m your only option so you better start packing and being a little more grateful.”  

I’m sorry - what did you just say to me, lady? She was literally the same as all the others in “homeless outreach” who take away your dignity, your agency, your humanity and then swoop in for the kill of your boundaries and self-confidence. Just another person telling the homeless that we get “no voice and no choice” in what happens to us and that we are just expected to be grateful for anything offered to us - no matter how dangerous or inappropriate for our own life circumstance it might be.    

And I was having NONE OF IT.  

I’d seen her type before.  Remember Randy at the trailer park trafficking those women who SO ENJOYED his position of power over their desperation for a place to live? THAT is exactly who Eve now reminded me of and her vibe went from “super motherly” to crazed maniac in the blink of an eye with me during this conversation wherein she did not get her way.  If you want to know who someone truly is - tell them NO and see how they respond.   

I then straight up told Eve that I knew Wendy was still using and that because of what had happened with my own addict niece there was literally no way I could live with an active addict who was not even remotely seeking sobriety.  I told her I drove over there and watched Wendy score drugs around the corner from and outside the watchful house camera surveillance eye and that she (Eve) should really become more educated about addiction if she was going to do this type of work and just take people’s word for it that they were “fully sober.”  

Eve then did something entirely unexpected.  

To say that I was fully unprepared for what came next and shook to my inner core by it TO THIS DAY is a broad understatement.  

Eve went literally off the rails insane and started SCREAMING at me that all my talk of drugs was “TRIGGERING HER” and making her crave drugs again and that if she relapsed AGAIN that night it would be all MY fault for talking about Wendy scoring drugs.  She was in such a crazed monologue that I don’t even think she realized what all she was saying in that moment but she actually said “...and I need you to move there and be in that house so when that baby is born you can be my witness that I had to take the baby because Wendy was on drugs when the baby was born and I need that baby because you have no idea how much WHITE BABIES go for these days and I absolutely need that money in three months….And besides - nobody looks for junkies like Wendy and even if they do no one will believe her and I NEED THAT BABY… ” 

Oh. My. God. 

She kept talking and screaming and saying the most legitimately terrifying things that I eventually just hung up on her. Shaking and fraught with worry for my OWN SAFETY now - because this deranged woman absolutely knew which hotel I was staying at.  I sat there, just trying to breathe and trying to process everything I just heard and now KNEW.     

Eve kept repeatedly & obsessively trying to call me back - twelve times that night and twelve times I declined her calls.  I resolved that I would NEVER speak to her again- willingly.  She finally quit calling but not before leaving me two (2) insanely irate screaming voicemails wherein she called me every cuss word available to describe an undesirable female. In the second voicemail she was quite clearly very inebriated or high on drugs.  

Just wow. 

I then did some more extensive research into Eve and her allegedly Christian organization and found that some ten years prior to launching Full Armor, she used to run a local cancer charity but that went defunct when she seemingly was suspected of not actually being a cancer charity at all - and her LLC abruptly disbanded.  Uh huh.  Color me not at all surprised.     

I was 100% certain I had just avoided ANOTHER major bad actor parading as a savior in the homeless outreach scene in Downstate IL.  I was also 100% certain something very bad was going to happen to Wendy AND her baby in that house; and Wendy was so high, she couldn’t even see it coming.   But I was powerless to do anything about it.  This Eve woman was connected enough throughout the Springfield area due to her alleged advocacy regarding human trafficking that I did not want to ruffle any feathers. I was having a hard enough time finding help and housing and in rural small towns Illinois, you do NOT want to make any local enemies.  

Ordinarily, I would have tried to infiltrate that house, document and record everything - just as I had in that lethal nursing home back in 2020 - and expose this woman Eve for the fraud that she so obviously is: a woman claiming to be a survivor of human trafficking and saving women from the same fate while all the while actively trafficking women herself and potentially even selling babies of the trafficked women on the black market.  I cannot PROVE that is what Eve did with Wendy and her baby which is why I have not named her (used her full legal name) or the real name of her organization herein.  But knowing something instinctively is true because of what you firsthand heard, lived through and witnessed vs being able to prove it beyond any reasonable doubt are two very different metrics- especially to small town cops who ALWAYS give the “fraud do-gooder people” like Eve in these rural small towns in Illinois a total pass and NEVER take the time to fully investigate them. 

And I honestly don’t say this to dunk on small town, rural cops. I think MANY, if not MOST of them, come from rural small town communities in Illinois themselves and want to BELIEVE in their heart of hearts that some version of “Normal Rockwell/Andy Griffith 1950 America” still exists and that only good people with only good intentions doing only good things for others in our communities exist all around them.  Sadly, such cops are simply deluding themselves from reality.  

Because the truth is this: these small, rural towns are literally the IDEAL HIDING PLACE for Christian-front organizations to literally get away with murder (and every other crime under the sun) whilst parading as  being holy Christians doing “GOOD WORKS OF GOD” in the community.  These false front organizations exist literally everywhere in small town America, in part, by intentionally and specifically labeling themselves “religious nonprofits” which then exempts them from MOST governmental regulatory oversight other nonprofits must comply with to operate.  

You want to get away with murder, human trafficking, large-scale drug production/sales, child abuse/rape/torture? Call yourself a religious nonprofit in rural America and just be AMAZED at all that you can get away with under the banner of doing “God’s work” in these small town communities.  It’s as intentional as it is corrupt.  And the people who created this “religious exemption system” knew exactly what they were REALLY creating: a false front under which they can commit every manner of horrendous crime and never be held LEGALLY responsible.   

To prove my point that these small town, rural law enforcement people are often the MOST clueless and uninformed among us regarding WHO is human trafficking people and who is actually legitimately rescuing people from that awful fate, I can tell you this additional detail about Eve.  In preparing to write this chapter of my Memoir,  I did some current research into Eve and her “Full Armor” false front of a fraud organization.  I found that the local law enforcement in Downstate IL actually HONORED this Eve for all of her work IN HUMAN TRAFFICKING with a special award ceremony in 2022 - because OF COURSE they did. <sigh>  

But thereafter, if you keep researching, Eve just drops off the grid right after that ceremony in her honor.  Could it be that someone began to sus her out and ask some tough questions as they did with her first fraud organization - her cancer charity? Dunno.  But she literally has just dropped off the grid and the phone number associated with her and Full Armor now belongs to someone else who is in no way connected to Full Armor.    

It seems to me, in comparing BOTH of her fraud organizations side by side, that ol’ Eve knows just WHEN she may have taken too big of a bite of that tempting apple of avarice and evil and knows when to fold em.  I have NO DOUBT she will reinvent herself under some other cause claiming to be the savior to some other vulnerable group by the end of this year or next.  People like her ALWAYS do.  They literally can’t help themselves.  They get away with criming and their own greed and evil for SO LONG that the temptation to do it again and again is literally irresistible to them.  And why not keep setting up shop under a different cause? When local law enforcement is a bunch of  “aw shucks Andy Griffiths” who WANT to only see the GOOD in the alleged pillars of their community people - even when that GOOD doesn’t actually exist - it makes it really easy to repeatedly prey on the vulnerable when you are a monster.        

 I cannot express to you how completely disgusted I am by these people, churches and agencies who give themselves a religious name to immediately have unearned credibility of being <viewed as>  a TRUE CHRISTIAN (read: wholesome and doing good in the world) by the community; all the while they behave abhorrently under the mantle of Christianity and their God. It is purely demonic and as bent as it gets.  

So, with “the great opportunity that Eve offered to me in housing” knocked fully off the table by me for GOOD CAUSE; and with no other options on the horizon springing forth from the 11 different “housing experts” allegedly working to find me housing - things were bleak.  Riley was still THANKFULLY paying my $650.00 month hotel “rent” during Winter 2021 but he was becoming obviously annoyed by my seeming never ending need.  As was I. 

The whole next day I was not OKAY with what had transpired with Eve - and Wendy for that matter.  I was having successive panic attacks and was bustling with raw, anxious nerves.  I had no idea what to do.  I needed to talk to someone but I had no one to talk to about what had happened.  I told my best friend Elisha about it and all she could say was what anyone would say: “Holy Moly, but you really dodged a bullet there. Good catch on sussing that con job out.”  

And I’m not one prone to depression in spite of ALL OF THESE CUMULATIVE life traumas I had endured since February 2020 but I was feeling hopelessly despondent that there are just so many EVIL people preying on the most vulnerable in America.  All of these people in all of these small town communities in Downstate Illinois pretending to be local saviors of the homeless and less fortunate all the while exploiting and victimizing them all over again.  It was repugnant and heinous and I couldn’t stomach it anymore.  

The subreddit r/suicidewatch on Reddit frequently discusses how useless, stupid, pointless and unhelpful all of the Suicide Hotlines are.  And the general and apparently accurate consensus regarding these Hotlines on Reddit is: “If you aren’t suicidal BEFORE you call one of these hotlines, you will be afterwards.” I knew this from reading it at least a hundred times on Reddit the past 8 months but I reasoned that I wasn’t actually going to kill myself but I wondered what they would advise me to do and wondered if they would be at all helpful if I called one. 

Curiosity got the better of me and after Googling several I opted to call one fairly far away from me.  I did so primarily because I also read the staff of these Hotlines all too frequently call the police on callers FOR NO VALID REASON and I did not need the Springfield PD descending on my hotel room under the auspices of a “welfare check” cuz of a call I made to the Suicide Hotline to talk about Evil Eve. 

My cellphone was dead and charging so I used the hotel desk phone to call. (There’s a nice BONUS to hotels that is often overlooked.)  I had literally no idea what to expect but I had heard and read from others who have availed themselves of these hotlines that the people answering these calls essentially just “mirror what you say right back to you so you feel HEARD.”  In my opinion, that is literally one of the most useless things you can do to a person legitimately in emotional crisis - for what purpose does it REALLY serve - in actual lived reality?  I don’t need to hear what I’m saying echoed back to me.  How absurdly stupid.  

SIDE NOTE: If a suicide hotline HAS HELPED YOU, I am not trying to offend you here. I am so glad they DID  help you and I wish you would tell your story because all most seem to hear are the stories from people frustrated with how useless these Hotlines are.  These Hotlines are definitely highly utilized - especially since the Nationwide launch of #988 last year to call the Hotlines.  But quantity of calls does not equate to quality of end results for the aggrieved caller. So, understand my vantage point here please and know that I am merely describing what my knowledge base was at this time having had no actual experience personally with such hotlines ever before previously in my life. 

Upon calling, right away some nice, older sounding woman answered and she said her name was Agnes.  I said hello and she said “Oh, dear, you sound so sad. Are you okay?”  I admitted that I was actually pretty sad and didn’t really know where to go with ALL OF MY SAD at the current moment.  She asked me if I had had anything to eat yet that day and I admitted that I had not because I was too distraught over things that had happened. Agnes said she understood but also remarked that sometimes a little food and a little act of taking care of ourselves can make things seem a little less awful. I agreed with her on that so she said “Why don’t you try some warm tea and crackers - just for starters - while we talk and see how you feel?”  I agreed and began to eat a Payday candy bar and drank some milk as it was all I had in my hotel room that particular day. And oddly enough, I did start to feel marginally better with this small act of nutrition.  Agnes did not rush or push me to talk or force me to specifically say I wasn’t going to hurt myself or anyone else. (I had read this is all they actually care about on the Hotlines and they try expeditiously to get you to say same just so they can dismiss you and hang up and go to the next caller.) 

Then she asked me to just lay down somewhere comfortable and stop pacing because “she was afraid that would cause my heart to race right out of my body” and she chuckled lightly as she said this.  It was helpful to PHYSICALLY calm down and relax into the bedding and pillows in the hotel room.  

Then, Agnes just casually asked me how my day was.  And so I told her the whole “Eve and Wendy story” and she didn’t seem shocked or nauseated by my telling of any of it - as I was at it all.  All Agnes said was “That is really, really awful and I’m so sorry you had to go through that.  No one should ever have to endure such things.  Are you sure you are okay? This woman Eve didn’t hurt you physically or anything did she?” I told her no - that all of our interactions occurred over Zoom or the phone and she remarked that that was likely a blessing in disguise.  That was true and made me feel a little better even though she DID know which hotel I was staying in. I had alerted Jonathan to be on guard for anyone looking for me and to not let anyone know I was there or what room. ( But Jonathan fully understood all of this already because I made the same request upon checking in because of my St. Louis maniac landlord stalker.)  So, I convinced myself Eve was unlikely to try and confront me at the hotel.       

And then for the next HOUR or so Agnes just kept on talking with me.  I told her some of the other things that were happening and she listened attentively but DID NOT MIRROR what I said at all.  Instead, she often interjected things like “Do you think X would help to try or have you thought about maybe trying Y etc…”  It was her whole kind, compassionate way of TRYING TO HELP ME with solid, concrete suggestions and ideas that really shocked me.  I guess after hearing nothing but NEGATIVE feedback about such Hotlines on Reddit, I never even considered such a phone call could be so…well… frankly HELPFUL and that the person who answered would be so..well…seemingly GENUINELY INVESTED in my life and my wellbeing.  

And after we talked for over an hour, I remarked that I was feeling much better and that she was so helpful to me and so kind. I told her I realized that she must have many other people waiting to talk to her and other callers on hold etc and told her I understood but that I so appreciated how much time and attention she did give to me.   

And then Agnes said the one thing literally no one reading this could ever believe she might say - as I couldn’t believe it myself…  

Agnes said: “Oh I’m just so glad you called me, dear.  You’re the first person to call me in 5 years. I don’t know who you are but I have so enjoyed talking with you and am so glad you called me tonight. Please call me again soon.” And she hung up.  

Oh. My. God. 

I am such a complete idiot.

In my former mangled mindset of frustration and despair over Evil Eve,  I had misdialed the Suicide Hotline and INSTEAD had lucked into Agnes the Angel instead.    THAT explained EVERYTHING about why that call did not go as I read they ALWAYS do on the Hotlines.  Agnes was just an isolated elder who apparently wanted someone to call her just as much as I needed someone to call that night.  And I’m here to tell you right here and right now: America could not do ANY WORSE than they currently do with these, broadly speaking, useless Suicide Hotlines if they DID staff them with all the “Agneses” and “Edwards” of America and had our wise elders talk us into getting back up for the hundredth time and soldier forth in this sometimes really hard thing called life.  I absolutely KNOW that I could make such a system work if given the funding, resources and all the wonderful Agnes Angels in the world.  For who better to help us and guide us than the people who have gone before us and felt the same way BUT LIVED TO TELL ABOUT HOW THEY GOT THROUGH IT?!  

Just think about it, America, is all I’m saying here, okay?  Hear me out and REIMAGINE how we help each other and who we include in that process and who we exclude.  Illinois currently  has “Warm Lines” for isolated elders to call if they need someone to talk to for ten minutes.  As my phone call with Agness proves - what good does ten minutes do? She spent an hour with me (maybe more) and reminded me how important self-care and being kind to myself is when we are wired with worry.  

And sadly, because I know you are all wondering: No. I never have called Agnes back - but not for lack of wanting to talk to her again.  Remember? I was on the hotel desk phone because my cellphone was dead.  I have NO CLUE which number(s) I misdialed in order to reach her that night.  But I would give almost anything to know because I would absolutely call her again and THIS TIME let her do all the talking while I listen and remind her to care for herself so gently.   She deserves at least that much.  

    By now it was nearing the end of March 2021 and I had been at the hotel since Christmas 2020.  Thankfully, my health and weight and nutrition, my ability to walk and breathe normally again - and take deep satiating breaths - had all been restored.  

But I was VASTLY IMPROVED medically not because of ANY PART of the Medicaid System with Aetna in Illinois or the Housing Helpers or Housing Authority in Springfield, Illinois.  No, I was allowed to recover and NOT DIE because of kind internet strangers, my friend Riley in Georgia, the deal made with Jonathan at the hotel to make it quasi-affordable long-term to recuperate there and because of the “bored” respiratory therapist on maternity leave at Barnes Jewish who coached me back to respiratory/pulmonary health.  Where each part of the actual system charged with and paid for healing and helping me FAILED ME COMPLETELY, real life, unsung heroes stepped up and saved my life - freely giving of themselves to me.  I owe them a debt I can never repay; but I am trying by writing this Memoir so that others going through the same catastrophic crisis in Illinois and elsewhere will not feel so totally alone.

And speaking of Jonathan, the Manager at the hotel.  Remember how I wrote those letters to Corporate and to Management of the hotel about him? Well, apparently I did such a good job that he used those letters to score his literal dream job in hospitality: he was leaving to go manage three (3) properties in Hawaii for ten times the salary he was making in Springfield.  And to that I could only say: “Good for him.” Godspeed, friend. I hope wherever he is today that he’s under a palm tree and living his best life.  

Unfortunately for me, Jonathan’s abrupt departure brought in some very unsavory, janky, low-rent, unprofessional, not well-suited for hospitality NEW employees to the hotel.  And my introduction to these crooks was literally them screaming at me and telling me they were going to force me to pay the full freight of what my 90+ day stay there SHOULD HAVE COST, regardless of the written agreement I had with Jonathan - because Jonathan was gone now. I began to panic.  I was literally going to be living in my car again and I was absolutely not going to pay these thieves $10,000.00+.  I called the Corporate Customer Service and explained what was happening and this is where I learned a crucial life lesson: ALWAYS stay at a Corporate location of a hotel and not a franchise.  Why? Because when things go sideways at the franchise, the franchise gets to do whatever they WANT TO DO and Corporate refuses to get involved on the guest’s behalf.  

Plus, this was now Spring 2021, a full YEAR into the Pandemic and people were starting to travel again and the once desperate for guests hotel industry had begun to pick up high occupancy again.  So, they simply did not need to make any $650.00 per month deal with me anymore.  

Fortunately, because of my legal training, I was able to convince them that they could not retroactively charge for my already paid-for-prior- months’ stay; as that was an overt breach of contract and I threatened to sue them under several Illinois laws.  I also reminded them that there was a Federal Eviction Moratorium in place  and in Illinois hotel guests over 30 days were considered TENANTS UNDER THE LAW with that Eviction Moratorium and that I could stay and refuse to pay and they would have to hire lawyers to LEGALLY remove me. They did not expect my legal expertise to hit them in the face with the blunt force of a metal trash can so we agreed that I would leave and owe them nothing further.

Because of this experience, I will tell you that I was a long-term Reward Member and always only exclusively stayed at this hotel when I traveled for business or leisure. But now because of that experience? I refuse to ever stay at one ever again, Corporate or not.  That is what Corporate does not realize in the hotel industry: if you do not force your franchisees to do right by your guests, they will never use you again - NOT FOR ANY REASON - and they will tell everyone they know to never use that chain again.  So, is it really worth it in the long run when they had my business during all business and pleasure travel for 20 years that they now try to screw me over and lose any prospective business from me in my remaining years? I wouldn’t think so.  

But there is a bit of karma to this reversal of good fortune in my stay at this hotel in Winter 2021.  I wrote the most specific, long-winded and detailed review of this franchise location and warned EVERYONE to never stay there because total thieves had been hired to run the place.  And I happened to be Googling something else entirely one night online A FULL  YEAR later and saw that that very hotel endured a 2021nSUMMER of nothing but horrid online reviews, then went into foreclosure and the franchise owner had to sell the location via bankruptcy.  Never you doubt that an immutable “justice” is at work in this life.  Better still, the new owner never put any money into the place that it sorely needed by way of the updates and repairs it needed when I was there in 2021 and it is STILL getting nothing but horrid online reviews to this day.  Touche’!!      

And speaking of NO HELP from the “7-10 Year Housing Wait List” people, they still had nothing by early April for me - a full three months later.  However, I FINALLY got really lucky and I was fortunate in that someone from Destiny Church in Springfield recommended a parishioner to me who was looking for a housemate/someone to rent his extra bedroom in his home for a very reasonable $500.00 per month - all inclusive.  That was way less than I was paying at the Marriott. I still had no money to my name because my Pandemic Unemployment STILL was never processed by IDES, despite me constantly trying to contact them and my State Rep Steve McClure attempting to do the same on my behalf.  

But as fate would have it, I had just received my Biden Pandemic Stimulus Check so I was able to use that Stimulus Check to move in with the parishioner who was an elderly widower and a marine.  I used my Stimulus Check to pay two months rent (April & May 2021) with the marine whose name was Gideon.  I will be the first to admit it: I got really, REALLY lucky.        

Because seriously: how was THIS “the homeless system” in Illinois? The “homeless outreach system” in Springfield took my information in January 2021 and fully documented the fact that I was considered street homeless, medically vulnerable and disabled in a wheelchair but literally NO ONE of 12 different Agencies and “housing experts” could find any available affordable, handicapped housing for me. Ever. And they all ADMIT that the wait for such nonexistent housing is 7-10 YEARS in Illinois.  I will literally DIE waiting for this system to EVER find me safe and affordable, handicapped housing. It is NOW March 2023, and they are no closer to finding me any such housing than they were two (2) full years ago.  And they should be liable for this level of depraved indifference, intentional apathy and craven cruelty all while grifting off the millions in government funds they receive TO HOUSE PEOPLE LIKE ME - but they keep it all for themselves, their own Agencies, their own salaries, their own bonuses and their own bigger houses.  This needs to be called out for exactly what it is: craven corruption with government funds.     

And were it not for Riley (with some big assists by Reddit again too) paying to house me in that handicapped hotel room in Winter 2021 where I could recuperate and rehab from COVID and my TBI and other medical, I absolutely would have died in the Winter of 2021.  No doubt about it.  And the sad part is: literally no one in the system PAID TO FIND ME HOUSING AS THE FUNCTION OF THEIR JOB even cares if I do die waiting for this housing.  Because the sad reality is: many Americans die every single day while waiting on housing and disability (SSD/SSI) which BOTH take years to process and be approved for folks. WE MUST CHANGE THIS SYSTEM AND MAKE DISABILITY AND HOUSING APPROVAL A 30 DAY PROCESS MAXIMUM, America. Otherwise, vulnerable good people will continue to die on the daily for want of basic necessities.      

AND WE ARE JUST LEFT TO DIE.  And nobody cares.  And the good people of America who DO CARE and want to help have NO IDEA HOW TO HELP.  They have always been told to give their money to United Way and The Salvation Army.  Don’t do that.  Those Agencies never once helped me and in fact - as you will read in a future chapter - United Way actively HARMED ME.  

So even when good people of good conscience with good hearts who WANT TO HELP their unhoused neighbors step forth - they know not how to TRULY help and where to give their money where it will be most valuable and utilized.  The answer to that age-old riddle, America, is this: Give your cash directly to the unhoused person and let them use that money to help themselves.  They know best what they most urgently need.  And on the off-chance you give your money to one of the hardcore street homeless folks who just use it for drugs rather than using it to access housing, food, clothing or other essentials - please don’t be mad at them. PLEASE, PLEASE don’t be mad at them. I get that righteous anger - I do - for I have felt it myself a few times early in my homeless journey when I helped someone who I realized afterwards is an addict.  But if you are going to try and help - and nobody says that you must - but if you want to help, you cannot judge the decisions We the Unhoused make when you have not worn our shoes or traveled our path.  And you simply cannot fathom just how DEEPLY TERRIFYING AND FULLY TRAUMATIC having no home, no sense of belonging anywhere is to us.  So if you give money to the homeless and they use it to numb out from their terror and their trauma for a time - please don’t be mad at them for that.  And don’t make it change WHO YOU ARE in your good, beautiful heart and make you say “Well, then - because of that- I’m never helping those losers again.” Because the reality is: for every 1 unhoused person who may use your help for drugs, the other 3 in 4 of us will use it to dig ourselves out of this unrelenting nightmare called being homeless in America.   I promise you that we will.   

My online Fam who helped me by giving me money to buy truly nutritious, chemical-free foods, my Huntington’s supplements and meds that Medicaid does not pay for during Winter 2021 - do you know what that help ALSO did? It got me out of my wheelchair and walking again, albeit on a still shattered left knee.  But THAT RIGHT THERE is huge.  And do you know what that walking then did for me? It made me able to fully engage in and  participate in the respiratory therapy I received free of charge from the angel therapist from Barnes Jewish.  You - total strangers on the internet - literally helped me WALK AGAIN which enabled me to FINALLY FULLY BREATHE AGAIN and recover from my longhaul, post-COVID pulmonary symptoms by the end of March 2021.

You literally saved my life when “the homeless system” left me to be trafficked or worse - just die. Full stop.  

Read that again: You literally saved my life.                        

So, don’t you good and wonderful people who DO have the heart to help the homeless ever doubt that what you do truly matters.  It often matters in big and small ways you may never see or be able to count.  And here’s something else you may also not know: there is a multiplication factor at work in the help you do give to We the Unhoused.  For you see, your generosity and compassion that you extend when you help any homeless person like me - that creates a ripple effect - which then ripples outward to help even more people. How could that happen, you say?  I’m so glad you asked. Because we get back on our feet, restabilized into housing and we turn right around and carry water back to those still consumed by the fire of homelessness.  Yes - the formerly homeless are some of the fiercest, bravest, gentlest, most resourceful and generous ADVOCATES FOR THE STILL UNHOUED you could ever hope to meet. And we just don’t stop trying to be the change we NEED to see in this World.  We are relentlessly persistent in our mission to get every person into safe and affordable housing who wants and needs to be there.  So you helping one of us truly does ripple out into the Community and the help it gives multiplies  more than you can ever imagine.   

And as an example of that “ripple effect” and of how we serve those in the unhoused community even when we ourselves may have attained shelter, I will tell you about my street ministry called “Jesus In Disguise Ministry” where I act to TRULY help the traumatized homeless.  First: Know that I do not use my ministry to force religion on people or force prayers in exchange for food etc. and I NEVER would do that. For I believe that Jesus instructed us to house the homeless, feed the hungry, help the widows and orphans, listen to the lonely and sit with the sad and honor the valor of our veterans - among many other charitable works.  And THAT is exactly what I do in my Street Ministry.  Anytime someone on Twitter sends me money and they put on the CashApp memo “Jesus In Disguise”, I know they want it to go to my street ministry that gets blankets & coats to the cold, warm food to the hungry, and lifesaving supplies to those on the streets and those living in their cars. And it often also brings those so truly terrified by first-time homelessness into, at least, temporary housing.  You will never hear me brag or tweet about my ministry work on Twitter because I believe ALL acts of true service and charity are to be done without applause or recognition.  I mention my ministry HERE just to demonstrate “the ripple effect” of how helping JUST ONE PERSON often helps so many more than you might ever imagine.  So, please, if you can help your unhoused neighbors - don’t hesitate to do so - because the simple reality for so many is, you may be the only one who does.    

It is noteworthy to me that the people who send donations to my ministry are usually agnostics, ‘spiritual but not religious folks’ or full-tilt atheists.  Where are the Christians of Twitter who bang on so loudly about their Jesus and their charitable deeds and generous hearts? Answer: They might be helping someone but they aren’t helping me or the folks I serve. And that’s okay.  God sees your heart. And theirs.       

KNOW THIS, AMERICA: Homelessness is spiraling out of control in this Country because too many people just never recovered financially from the Pandemic. And our government is absolutely not coming to help us. So again I say: it’s all up to us.  We only have each other to count on, America.  You in? Then go all in for the win and HELP US HELP EACH OTHER. 

Because if not you, then who? And if not now? Then when? Your help today ensures we get to a brighter tomorrow and that we don’t die in the gutter outside of Memorial-esque Hospital in sub-zero wind chills because “the system” is intentionally cruel and broken by design and created to ensure that we DO die for want of basic, safe shelter. We are all we have, America - each other.  It’s us against them and us against every broken social system in America.  We must band together and demand housing and better QUALITY OF LIFE  for all. Now. This year.  Not some vague “5 Year Plan” like Governor Pritzker has outlined.  We need to help each other RIGHT NOW. Today. This hour.  Because the reality is too many of us will die while we wait for our leaders who are liars to finally do the MORALLY just thing and HELP US. We need housing for all and healthcare for all. Now. And not the NONEXISTENT lived reality of IL Adult Aetna Medicaid wherein they make 90 Billion in profits last year but I can’t get an MRI for my shattered knee.  All Americans deserve fully free healthcare equivalent to the top-tier healthcare our Congress wrote into law for themselves.  Funny how they write “You Get Nothing and Like It” into Medicaid but give themselves the best of everything that healthcare can buy, isn’t it? That needs to stop. Now. Today. And we are the only ones who CAN stop it and demand that the American government invest in Americans.  We can house every unhoused American if we invest the money spent on just 1 military aircraft carrier fighter jet into our people rather than proxy war toys. It is past time for Americans to demand our government help US, We the People.          

UP NEXT: Chapter 5: HOME AT LAST WITH A MARINE, A MUTT AND (UNPLANNED) MARITAL MAYHEM