Help Arik Fight LONG-TERM COVID and Recover
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Hi, my name is Arik. I have Autism, which is a hard enough condition to live with—and for others to understand. But I also have LONG-TERM COVID. And I sure could use your help.
Long-Term COVID has effectively ruined my life. But I’m fighting with every ounce I have. My last name means “Bear” in Norwegian. And that’s how I’m fighting this horror, with a bear’s strength.
*** DECEMBER 3 UPDATE ***
I want to THANK EVERYONE so much for their generosity!!
Just to give you an update. The giving hearts of so many have helped me cover ALL my back rent and this month's rent! Plus a little extra to make sure I have food and supplies for my emotional support buddies, Loki and Porridge, for awhile.
That brings me to $20K, about 40% to my goal!
But I still have $30K to go--which is made up of a mountain of medical and attorney bills, plus other bills that piled up the past few months.
And of top of that, I was robbed by so many Predators of thousands of dollars, and so much of it can never be recovered--or I even have to pay back. I promise you it's no fun to wrestle with so many creditors about fraud when you have Brain Fog about what even happened!
If you follow me on TikTok @ auggiebjorn , you'll be able to hear me share more about my recovery and what life with LONG-TERM COVID, including Chronic Insomnia and Brain Fog--PLUS Autism--has been like. PLUS, I've been reading some of my stories as a way to "give back" to everyone for their generosity!
Some other good news. I found a part-time job working with seniors that helps me cover just the essential day-to-day expenses now. But it's a good start, and it feels great to be back in the workforce. But I'm really struggling to find full-time work, especially the kinds of jobs that having brain fog makes really hard for me to do now.
ALSO, THANK YOU SO MUCH for helping raise Awareness for my condition! LONG-TERM COVID impacts more than 17 million Americans, and so many of us don't even realize our symptoms might be related to a case of COVID.
Again, there are really good educational links about LONG COVID below.
And if you have the chance to help out again with another donation, I would be so grateful. I'm making the most of this opportunity to restart, and I can really start to see the light at the end. PLUS, I really feel like I can be successful for Raising Awareness for LONG-TERM COVID--your support has really enabled me on that path.
*** END OF DECEMBER 3 UPDATE ***
I’m asking for your compassion and generosity to help me rebuild my life—but even if you can’t give, I hope this GoFundMe page will raise awareness about Long-Term COVID. (Please see some educational links about Long-Term COVID at the end of this message.)
COVID is a Pandora’s Box that opened up a hell inside millions of people, who until now, probably just like me, have been living very misunderstood, vulnerable, targeted lives.
In the past few years, I lost Everything and Everyone I ever cared about or loved. Family. Friends. My Community. My Career. Tens of thousands of dollars, including my retirement, and every penny I had ever saved.
Here is what the CDC has to say about Long-Term COVID: “People with these unexplained symptoms may sometimes even be misunderstood or experience stigma.”
That is the Understatement of the Century. Here’s my story…
I got COVID very early in 2020, and with it, IMMEDIATELY came a mental health and physical hellfire of symptoms, including a rare form of Insomnia known as Cataplexy—also, Brain Fog. And I have a rare skin condition which my doctors are still trying to figure out.
If you don’t know what Brain Fog is, just think “early onset Alzheimer’s.” (My house is literally covered in sticky notes to help me remember even the most basic things.)
If you don’t know what Cataplexy is, I don’t know, go watch the movie Smile 2. It’s a pretty dang scary form of Insomnia, just like my life has been. For the past 4 years, I have gone 3, 4, 5—even 6 days straight—with Zero Hours Sleep DOZENS of times. On top of that, I’ve had “waking dreams” that I wouldn’t wish on anyone. They’re like nightmare hallucinations.
Unfortunately, Extreme Insomnia is just as “Extremely” misunderstood. Why? Because everyone, as they get older, feels “tired.” But I’m talking about ZERO SLEEP for days on end. (I invite you to force yourself to stay awake for 72 straight hours and see how well you function.)
After the 3rd day of no sleep, your world begins to unravel. By Days 4 and 5, Reality becomes unhinged. Everyone around you—including the people you truly trust and depend on—think you’ve spent the weekend in a meth lab. By Day 6, your life is in real danger, you need to get to an ER. And you’ll be lucky if the doctors there take your condition seriously.
I got massively unlucky. I used to live in South Carolina, where ALL of my Long-Term COVID symptoms were either misdiagnosed or largely ignored by my medical team.
I had a GP, a sleep doctor, a counselor, a psychiatrist, and other specialists. NONE OF THEM treated me correctly. None of them even knew what Long-Term COVID was. (Heck, the world at large is still learning.) And, thus, my life quickly unraveled.
I lost EVERYTHING. And because I’m allergic to sleep medications (even Melatonin), I turned to unhealthy substances for sleep. Why? Because you DIE from Lack of Sleep before you die from those substances. I guess I could have asked someone to punch me in the face to fall asleep every night, but there aren’t too many doctors who will make that house call.
A simpler way to put it: NO ONE was listening to my cries for help.
At any rate, I lost Everything. And my condition seemed to bring out the worst in Everyone. You know that Temptations song, “That’s What the World Is Today”? There’s a repeated line throughout the song: “BALL OF CONFUSION!”
That was my life. Everything was confusing—for me, and for everyone around me. I was called every horrible name in the book by those who I loved most: my partner, my family, my employers, my community. No one understood me. And no one seemed to be listening.
So I packed up my bags, walked away from my life (except my two cats, who seem to actually understand me), and headed to New York City. Because I believed that if there was hope for me, I would find it in a really big city.
AND I DID.
But not before an enormous list of Predators in the Big Apple took advantage of my condition and robbed me blind. Before I could turn around, every resource I had was gone.
Finally, one night, I woke up in a pool of my own blood in my apartment (I still have no idea why, I think I was beaten by someone), and I got myself to yet another ER.
But this time I found myself in an amazing healthcare system in The Bronx. The ER doctor LISTENED to me. My providers finally took my symptoms seriously. THEY BELIEVED ME! It was the first time I felt understood—that someone was listening—in 4 years.
In fact, I’ve even had doctors give me their personal phone numbers. I wish everyone with Long-Term COVID could come to New York and seek treatment where I am.
That night in the ER, the doctors gave me a medication for sleep that works! I slept 16 hours the first night I got home! And I’ve been sleeping like a baby ever since. As I write this, I am finally well-rested for the first time since 2020.
But that doesn’t mean I’m cured. And it doesn’t take me back in time—I’ve still lost nearly everything. And my Brain Fog still exists—which is godawful. And the skin condition.
I am so grateful that I now have an amazing team of physicians and a special group I attend every day to help me back on track. But it’s a real uphill climb. And the daily fight with Medicaid and other “caring” institutions takes a whopping toll on me.
And those Predators I talked about? Well, they stole everything, ran up my credit cards, emptied my bank accounts, stole my car (I got it back thankfully), even tricked me into taking my savings and retirement funds.
Essentially, they took advantage of my total helplessness. Welcome to the big city.
Why not just call the police and credit card companies? It isn’t that simple. Because of my memory issues and extreme sleep deprivation, I don’t even know who many of them are. And some of the ones I do know, these are very dangerous people, I’ve come to learn.
What is best for me now, other than to try to recover what I can, is to move on and up from rock bottom.
Even more importantly: I’m dedicating my life to help raise awareness about the seriousness of Long-Term COVID. It’s real. Again, please read the helpful info at the end.
The CDC estimates millions of people in the U.S. have Long-Term COVID—tragically, my condition is an extreme form. I’m very grateful to be plugged into a healthcare system that is helping the whole medical world better understand the condition in extreme forms—especially for people like me on the Spectrum. Like I said, having Autism is hard enough.
The good news: I can finally sleep. At times, I’m lucid and well-rested enough to write something like this.
The bad news: In-between the Brain Fog, I’m trying to pick up the pieces of my life.
I’m facing eviction and losing my two emotional support animals. Also, I’m buried in debt, and all the resources I had saved for my future are gone.
And it’s really hard to find work when your most recent employers considered you a lost cause (even though I had formal workplace accommodations) and dumped you in the street. That said, I’m looking hard to find a job.
So, I’m asking for your help and generosity. But I’m also asking you to be aware that Long-Term COVID is REAL. In fact, others suffering from it have reached out to me for help. They’re lost too. They’re facing similar circumstances of alienation and hopelessness.
And odds are: you know someone with Long-Term COVID who depends on you to listen to them.
We live in a different world now. It is important, no matter how we feel, to help others as much as we can. And to LISTEN to others—especially the ones we love.
I’ve spent my entire life trying to help others for no gain. But now, I could really use some help, so that maybe I can regain the relationships I’ve lost, and so I can keep helping others in the future—especially others like me.
Thank you so much for listening. I appreciate any help you can give and offer.
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Some important, and RELIABLE, Long-Term COVID information:
The Mayo Clinic reports there are “MORE THAN 200 SYMPTOMS” of Long-Term COVID:
In research studies, more than 200 symptoms have been linked to long COVID. Symptoms may stay the same over time, get worse, or go away and come back. Common symptoms of long COVID include:
• Extreme tiredness, especially after activity.
• Problems with memory, often called brain fog.
• A feeling of being lightheaded or dizzy.
• Problems with taste or smell.
Other symptoms of long COVID include:
• Sleep problems.
• Shortness of breath.
• Cough.
• Headache.
• Fast or irregular heartbeat.
• Digestion problems, such as loose stools, constipation, or bloating.
Some people with long COVID may have other illnesses. Diseases caused or made worse by long COVID include migraine, lung disease, autoimmune disease, and chronic kidney disease.
Diseases that people may be diagnosed with due to long COVID include:
• Heart disease.
• Mood disorders.
• Anxiety.
• Stroke or blood clots.
• Postural orthostatic tachycardia syndrome, also called POTS.
• Myalgic encephalomyelitis-chronic fatigue syndrome, also called ME-CFS.
• Mast cell activation syndrome.
• Fibromyalgia.
• Diabetes.
• Hyperlipidemia.
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Finally, from my apartment in The Bronx, I can see a billboard on the other side of the Harlem River that reads in huge letters:
COURAGE
I’m not sure why someone put it there, but I’m sure glad they did. It’s been a bit of a north star to me these past months. That’s what it has taken to get this far. And it’s what it will take to keep going.
Organizer
Arik Bjorn
Organizer
New York, NY