I never meant to make this a habit. Yet here I am — four years after surgeries and recoveries kept me at Central Washington Hospital in Wenatchee for a month — coming up on three weeks of inpatient care for a completely different reason. As I write from my bed in the Intensive Care Unit, plans are being made to transfer me to Seattle for my next level of treatment.
Let me make it clear that I do not have COVID or anything like it. I am vaccinated, repeatedly tested negative and am up for the booster shot. My “vitals” are all strong, my respiratory system is fine. That is a good thing, because the preventable disease I took the reasonable precautions against would have dangerously complicated the non-preventable disorder I am dealing with.
I have been diagnosed with an autoimmune condition that is rare enough that most people have never heard of it, but common enough that neurologists can recognize and treat it. Causes can include stress, but it’s not something you contract. Symptoms can develop over several years (mine did). Treatment can take several months (mine will). The condition cannot be cured but can be managed into remission or control. It is generally not progressive and doesn’t affect life expectancy for most people.
Symptoms can include drooping eyelids; blurred or double vision; impaired speech; trouble swallowing; and weakness in the arms, hands and fingers. I have all of these. My ability to speak is impaired and at times I cannot make myself understood, like Elmer Fudd on downers. Blurred vision makes it hard to read anything; the pile of books I brought along sits untouched. Motor skill losses in both hands make it challenging to write.
Most problematic, I cannot voluntarily swallow anything most of the time. I am getting all my nutrition, hydration and medication through a feeding tube in my stomach (an improvement over the nose tube I started with); or by IVs. Although I’ve shed some pounds, I cannot recommend it as a weight-loss plan.
I am getting excellent and effective care at Central, just as I did four years ago, and am making steady progress. The doctors, nurses and staff have all been attentive, concerned and consistently professional — while they are dealing with unimaginable stress, burnout and insane hostility from some people whose lives they have sworn to protect.
I could not be more grateful and appreciative, and I tell the dedicated Central care providers that constantly. I don’t think they are hearing enough supportive feedback these days, and they deserve it.
By the time many of you read this, it’s likely I will have been transferred to a Seattle hospital for another course of treatment that Central doesn’t provide. The doctors here have been in direct contact with doctors in Seattle to find me a space. And like too many people in this country, I have an urgent care need that is waiting in line behind people being treated for a disease that they could have prevented.
I could write more about that, but Solveig Torvik covers the issue pretty well in her column this week. I would echo her sentiments, but probably with more anger and profanity than would be appropriate for a family newspaper. I’m not angry about my condition. I could lament what you might call a “why me?” disease, but what good what that do? I’m angry that people like me have been put at greater risk by people who won’t get vaccinated.
What’s next? I’m likely to be mostly in Seattle for a while, under the impossibly patient home care of my partner Jacqui, before I make a full-time return to the Methow. While there is a limited amount of work I can (and must, for my sanity) do remotely, it will fall to my amazing crew of staff and freelancers to keep the paper going. They are already stepping up with energy and attitude to continue producing the print and online information this community deserves. I am proud and thankful. Our otherworldly competent Managing Editor Natalie Johnson will act as editor in my absence; please direct information and questions to her. It’s going to be a challenge as we have a lot to do, so your help is important.
Thank you, as always, for the support you provide to this community-driven newspaper. Its worth is beyond expression. I could not have been sustained these past 10 years without it, and can’t wait to return. I will try to respond to emails as I can, but it may take a while as I am rationing my efforts, and overdoing it will slow my recovery. My closing thought, from my bed in the ICU where some days I am the only non-COVID patient, is this: Please get the shots.
