Let me just start out by saying, the United States is not the Kingdom of God. In God’s Kingdom, all are filled with health and vitality; in the United States, we allow our sick to be stripped of their homes, to be arrested and imprisoned rather than treated, to lose the things that give them respect, esteem, and independence. In God’s Kingdom, there is no marriage and divorce; in the United States, these exist, but are not available to all who need or want them. In God’s Kingdom, forgiveness and love are treasured values; in the United States, we seem to most value fear, anger, and hatred.
Today, in this earthly kingdom, my body fails me. If you’ve read this blog before, you’ll know that I have Ehlers-Danlos Syndrome, which is an inherited connective tissue disorder that has caused me recurrent injuries (sprains, strains, subluxations, dislocations) and chronic pain. Also associated with EDS and affecting me are Chronic Fatigue Syndrome and several dysautonomiae, including vertigo, low body temperature, and Raynaud’s-like temperature sensitivities.
Also in this earthly kingdom, I work a desk job. I’m blessed to work as a skilled professional, and I’m similarly blessed in terms of salary. And I spend much of that on prescription medications, doctor visits, physical therapy visits, therapeutic procedures, braces, splints, and purchasing conveniences (like meals out) that reduce the incidence of injury and/or pain levels. So yes, I spend dollars to relieve and alleviate pain, and a lot of those dollars go to meals that I’d really prefer to be able to cook for myself.
In early August, my doctor and I discussed going on disability. Between EDS and CFS and full-time work — yes, this is full-time work at my ergonomically-optimized workstation, which is in my home — my body was exhausted. Not exhausted like “I just mowed the lawn,” but exhausted in its true sense, meaning “used up.” So on August 5, I did not work. My short-term disability claim was filed (and there were shenanigans, including incompetence and good ol’-fashioned American laziness), and on September 14, it was denied.
Right now, my doctor has cleared me to work 12 hours per week. My employer will not allow me to work more than this right now; of course not, because they don’t want to be liable for harm to my body from working more than my doctor says is safe! So imagine your pay for a moment; now imagine about a fourth of it; now give serious condition to living on that for the next few months. But wait! First you need to go unpaid for a month. THEN you can live on about a quarter of your regular pay. For the next several months. That, or live with your normal salary, but completely unable to enjoy any benefits of it. Like a home-cooked meal. Like a vacuumed carpet. Like getting through an entire workweek without having to use any vacation or sick time for profound pain or exhaustion. Oh yeah, and because you have so much absenteeism and because your productivity has tanked, you’re under constant fear that you’ll lose your job entirely, so you wouldn’t even be able to get any disability benefits whatsoever.
This is not the Kingdom of God. Heck, this is one crappy kingdom for human beings!
So, yeah. Having Ehlers-Danlos Syndrome in the United States in the 21st century has already cost me my house, in bankruptcy last year. It has wrecked my career and made me virtually unemployable — who wants to hire someone capable only of telecommuting, with a horrible record for absenteeism and productivity? Now I’m only wondering how long it will be until my husband and I are living in our van down by the river, literally. And the best part? Disability attorneys don’t even want to talk to me. They tell me they’ll be willing to talk to me once my application for Social Security Disability has been denied, but can’t offer me advice until then. So I’m hamstrung by being a skilled professional with a good job and good benefits.
My husband and I joked about being glad he’s working at the parish he is, because it has a great outreach ministry to a homeless shelter nearby. We laughed about having our first cardboard box as a married couple and the fun of looking forward to finding a nice roomy refrigerator box instead of our starter home in a microwave box. And right now, I weep. I weep because I don’t know what else to do. My husband and I aren’t going to qualify for any kind of assistance program until we lose most of what we have.
But hey, my monthly withdrawal to the IRS for this year’s owed taxes bounced last month. Maybe they’ll arrest us for tax evasion, so we can have a nice comfortable home in federal prison.
Because that, my friends, is the United States version of the Kingdom of God.