This is going to be rather candid. Content warning: mention of suicide mid-letter. I don’t mean to scare anyone, but it’s important I share this.

As you may know, I’ve been living with fibromyalgia and myalgic encephalomyelitis​/​chronic fatigue syndrome (ME/CFS) for the last four years or so. ME/CFS often starts after an infection. Fibromyalgia too can be triggered by an infection as well as emotional stress. I don’t know why this has happened to me, but I suspect it to be the result of trauma and/or my first COVID-19 infection. If you’ve known me since before pandemic time, you know I’ve always been tired, so I suspect I’ve always dealt with fibromyalgia to some degree, perhaps the result of cPTSD related to childhood trauma and emotional, psychological, and spiritual abuse I experienced in college. (But that’s another story.)

Nevertheless, illnesses like mine are often called “long COVID,” and I identify with those who have long COVID. It’s an awfully lonely, crushing experience. And so I really need your support. You can help me by writing me encouragements (letters, email, or text), supporting me financially (since I have lost most of my work), and taking greater COVID precautions. More on this at the end of this letter. If you’d like to skip there (and skip the content warning), feel free. From here, I will share more about my condition.

What it’s like

I have become severely disabled by this disease. I am home-bound and often bed-bound. On a good day, I wake up with fatigue and pervasive body aches. On a bad day, the pain and fatigue prevent me from doing most activities. Showering often takes all my strength. Cooking and housework trigger worse symptoms (what is called post-exertion malaise). I have such brain fog that I no longer feel comfortable behind the wheel of a car. I experience debilitating nausea and migraines. Many medications have failed me. I rarely find relief.

One of the worst effects is the mental anguish. I’ve suffered major depression nearly all my life, but the grief of this chronic illness is terrible. I have lost so many parts of my life: performing, rock climbing, running. Not only this, but I am isolated as a result of my home-boundedness. I miss going out to shows, coffee shops, open mics, restaurants. Most of the time it’s too hard on my body just to get out of the house for more than an hour. And most events and establishments no longer practice any COVID-safety. And so, not wanting to risk another infection and worsening of my illness—or at least not wanting to trigger post-exertion malaise—I often remain home-bound. It’s not as if I have a choice most of the time. I’m usually too sick.

As I’ve been taking care of my physical health, I’ve also been taking care of my mental health. I’m currently doing EMDR therapy, to try to address the traumatic memories that have only gotten louder in my illness. Needless to say, I’m going through a lot. And it feels like hell. And I wish it weren’t so, but I often want to die. My self-esteem has taken a huge hit by the world’s ableism etc. It’s easy to internalize and blame myself. I struggle everyday against thinking I’m worthless, defective, bad.

Since I can hardly work anymore, we (Jess and I) have been hoping and waiting for over two years for me to receive disability insurance. They denied me the first time. Last year we partnered with a disability lawyer to appeal my case. But we’re still waiting. Meanwhile, we are slowly burning through savings to cover our living expenses. We would like to have a child someday soon, but I’m afraid we can’t afford it.

How you can help

It is my bad habit to isolate in times of stress. So I’m taking contrary action and reaching out to you all. Here are the ways you can help me.

• Please continue reaching out:
  • Write me an encouraging letter (or email or text). If we know each other, you can request my home address or phone number. You can reach me by email at arend@arendleejessurun.com.
  • I am often so fatigued and brain-fogged that conversing is difficult. Please understand if I do not write you back immediately or at all.
• Support me financially:
  • Purchase my music. All my music is available for free or name-your-price on Bandcamp. My songs are my primary way of self-expression. It means a lot just to be heard, even if you cannot purchase.
  • If you’d like to just send me money, my Venmo is @arendleejessurun. My PayPal is also @arendleejessurun.
  • Make a record with me. Recording, mixing, and mastering is my happy place, and I love helping others release their music. It’s also the only kind of work I can do presently, along with teaching private lessons.
  • Take a lesson with me. I teach guitar, voice, songwriting, and music production. Music is good for my nervous system. And I really enjoy getting to teach others a new hobby or skill.
• Remember, we are still in a pandemic:
  • Wear a respirator (mask) often. This is still the best way to fight COVID, as the vaccines do not prevent infection or spread. Wearing a respirator in public may not help me directly, but it will potentially save others.
  • Consider making your events and gatherings mask-required. I want to come to your shows and parties and such, if I’m able. I hate having to say no because of this.

Thank you for reading,
Arend