Sunset

I read in Isaiah and Jeremiah this morning while I drank coffee and inhaled all the steroids. Did some laundry, made some phone calls. Rebekah made nice tasty eggs for lunch. After lunch the kids went with me to WalMart to pick up a few things. I felt very tired after we got home. Tried to read The Idiot, but only made it through a couple chapters before I started going cross-eyed. Yet I couldn’t sleep. It’s the Prednisone. The doses are lower now, but I still have two more days of 40mgs ahead.

The hospital called to arrange the first Xolair injection on Wednesday morning.

Sikki got home around 3:30. I got out of bed and went for a brisk walk on the east end of Holden Beach. Breathing was difficult, but I got to see the sun set:

Advertisements

Week 7

On Thanksgiving weekend 2015, ten years to the day from my father’s sudden death on 11/28/2005, I went to the couch with several layers of blankets, congestion, and a fever which culminated in my calling out from work on 11/30/15, six Mondays ago.

The pneumonia forced exploration of an issue I’d been pressing through at work and home: the constant wheezing and coughing I’ve experienced for years. Back when I still had one foot in Delaware and one in North Carolina, I went to an allergist and pulmonologist hoping to get the issue resolved. But I didn’t learn anything I didn’t already know and ended up owing a bunch of money for medical treatment that yielded neither diagnosis nor prognosis nor plan. The lack of answers from the first round of expensive medical inquiries made me angry and resistant about going back for more. So I didn’t.

But the lung infection twisted my arm. So here I am, seven weeks later, with a diagnosis of COPD and persistent asthma, waiting on the next step (in both physical and spiritual terms). To people who inquire I say I’m taking a day at a time. I know these events — indeed all the events of my life — are purposeful, are ordained in God. He knows the best ways to reveal Himself and detach us from the things that are holding us back from walking with Him.

But I’m bored. When I want to write, my mind is foggy. Words are far-away clouds. When I make a list of things I want to accomplish around the house and yard, I become listless. If I try to watch a movie I’m sick of it in twenty minutes. I try to read and my eyes drift over the lines and don’t connect the images with my mind. Nothing is exciting or gripping.

I have never felt this way before: this old, this tired.

This is a season. I know that. I just want this waiting period to be what it should be, what He has in mind. I want to be changed. I want fresh vision. Something has to die if we are to know the power of His resurrection.

Yet those who wait for the Lord
Will gain new strength;
They will mount up with wings like eagles,
They will run and not get tired,
They will walk and not become weary.

 

Truth: negative in first appeal, positive in reaction

Sikki rode with me from her workplace to the follow-up appointment with the pulmonologist this morning. The doctor said my lungs sound a little less clogged, but attributed it to the high doses of Prednisone I’m taking rather than to actual recovery. (I didn’t tell her that I took a brisk walk last night for the first time in six weeks, which may have played a part in opening them up, too.) Prednisone and inactivity are causing weight gain, which is why I’m now counting calories and defying orders by getting some light exercise.

The doctor says I have combination allergic asthma/moderate COPD. My lungs should be functioning around 80%, but they are only at 64%. This is comparable to a lifelong smoker who is 50 years of age — unusual for a 40-year-old who’s never smoked. But she says there is hope that this blockage can be reversed. Going forward she agrees with the allergist in recommending therapy with Xolair injections. I told her about the nature of my job and she suggested I might need to start looking for different work, as being in and out of cold environments is not good for me.

There is time to figure things out. It looks like a moment of transition, a turning page, a fade to black to enable new potentials in the fade to white. I don’t know whether I’m entering the purgation of the Dark Night of the Soul, or coming out of it. Either way, we walk by faith and not by sight.

Deep inner longings to know.

Thursday, 10 AM. We went to the church last night. The kids go to their youth function nearly every Wednesday evening. I went to the sanctuary where several adults had met to pray. Got myself prayed for while sitting in the center of a circle of faithful elders, as the recent news from the medical community has not been helpful. It was good to get out of the house last night and pray with other believers.

Sister Judy in particular prayed for Sikki and our marriage and family. She hears from God. My wife and I need prayer for our marriage because something is slipping away. I have been lying awake at night wondering if our marriage is strong enough for me to endure a long sickness. My parents’ marriage finally crumbled when my father became ill and wasn’t able to work.

My thoughts go back to childhood memories of peering into my maternal grandparents’ bedroom: I looked in and saw two single beds. My parents slept together…I assumed everyone’s parents slept together. But now I remember the musty, enclosed room in that old house and wonder how marriage can be reduced from a passionate relationship marked by bonds of ecstatic heat and wetness and deep inner longings to know, to a frigid socioeconomic contract. Their bedroom testified to the striking of what must have been a long settlement, a cold bargain to survive dashed hopes in a time when people didn’t talk about such things and stayed together for the kids.

To some degree Sikki and I deal with these feelings. Maybe all married people do at some point. Even a queen-sized bed is large enough for both parties to remain untouched and unfelt. But there is a natural ebb and flow to all relationships.

When Paul spoke about the relationship of Christ to the Church, he used marriage as the picture, the pivotal relationship God created in the beginning that would find culmination and full outworking through the work of Christ into eternity. Today marriage is held in dishonor by Western culture and many in the Church, but the plan of God will not be shaken.

The Prednisone pushes sleep out and away from my body. I dozed for three hours, then was awake from 2-6 AM. I watched videos and read the news and a couple chapters from The Idiot. Felt very dizzy and blurry eyed. Then I went back to bed, sleeping badly again until 9. I did some reading about Xolair, the drug the allergist and pulmonologist have discussed with me. If that stuff doesn’t work, I’ll be in a pickle. But if it does work, it doesn’t look like a medication I’d be able to stay on for too long because of its expense and side effects.

What if science and medicine fail? Sikki is talking about “getting me well,” referring to medical initiatives, but what if there is no getting well apart from the intervention and good hand of God? I want to be faithful to God and bring Him glory regardless of the circumstances. He knows everything the doctors don’t: He sees the past, present and finished product. The little loaves and fishes of my existence are in His care. I won’t be afraid.

Pulmonary Function Test

I went for the lung function test at the hospital this morning. To my surprise, the pulmonologist called to discuss the results soon after I got back home. Lighting quick communication is one of the advantages of the digital age.

Her notes from the patient portal online state: “The lung study shows you have moderate COPD, Obstructive Lung disease.”

She asked if I had ever smoked, or been around people who smoked, because the obstruction is pretty significant for someone my age. (I’ve never smoked, but my parents smoked around me when I was young.) She said I was around 64% capacity at the beginning of the test which is comparable to someone in the second (moderate-severe) stage of COPD. After some inhalations of albuterol, the function climbed to 80%. She said the fact that my lungs opened up to the medication was a good sign, meaning whatever is clogging them can probably be reversed. Apparently someone with typical COPD won’t respond to the meds. I go to see her and discuss next steps on Friday.

I talked with HR at work and found out short-term-disability lasts up to 26 weeks, but they will post my job after I have been out of work for 12 weeks. I have missed work since 11/30/15, so I am in my sixth week. If I lose my sales route, I will have to apply for whatever is available if and when I return to work.

Sikki is hoping I don’t go back, that I wind up getting a job elsewhere. She doesn’t seem concerned about the finances, which isn’t her historical reaction to things like this. If it gets to the 11th week and I’m not better, I still might try to return to work just to keep my route.

But if I am to be out of work for an extended period of time, I need to get focused on something useful. Perhaps I’ll start writing something more substantial: I’ve got a book or two inside that I’ve never brought to light.

Long Shot Xolair (Psalm 118:17)

It is Monday night, pushing 9:30 PM. The allergist did some skin tests today and confirmed allergies (no surprises there). Then he took a bunch of notes on my history. He wants to get records from my old pulmonologist in Wilmington and from the new pulmonologist in Shallotte and from my primary care physician. Three doctors, three specialties working in tandem and what do they know?

Not too much.

After I told the allergist all the meds I’m on and how my symptoms have not abated for several years, he concluded I have “moderate to severe persistent uncontrolled asthma” and prescribed weapons-grade doses of my personal favorite medication, Predisone. (Ye Olde Pred-ator makes me hungry and unable to sleep and gives me a roaring case of the flaming holy grumps.)

He didn’t sound too hopeful that more inhaled steroids were going to do me any good since I haven’t improved on them for 4-5 years, though I’ve changed medications several times to try and find one that works. Instead he recommended a shot therapy that is more “aggressive” than typical allergy shots: something called Xolair. Costs about $12,000-$14,000 a year, two of every thousand people go into anaphylactic shock as a result of getting a dose, it increases risk of certain cancers and might increase risk of heart disease. And it doesn’t take effect for about three months after you begin treatment. To about a third of the people who take it, it’s a miracle drug. To another third, it helps. For the rest it does squat.

When I asked if he thought I could exercise (since my job is pretty physical), he said my lungs sounded too “junky” and inflamed right now.

Boy oh boy. I was pretty depressed when Sikki and I left the place because today was the first time a doctor said he doesn’t think I’m going to get better right away. Sikki was starving and drove to Taco Bell, and I was in the passenger seat wondering whether I should just try to push through the trouble somehow and attempt to go back to work next week. I’m still mulling that over, because there might not be a job to go back to if I’m not better three or four months from now. I don’t want to be stupid but I functioned for a long time at my job while I was sick. So I know working wouldn’t improve my lung function but it would burn some calories and — of course — make money. This time is different, though; my breathing has gotten progressively worse.

It’s hard to know what to do. I’m an old and tired 40 years, but I don’t want to sit at home on disability or something. I want to go out and work to provide for my family. I wouldn’t have expected I’d be dealing with a long, drawn-out illness at this point in my life.

Tomorrow morning I go for a pulmonary function test at the hospital, then I return to the pulmonologist on Friday morning. If I can’t exercise I am going to have to start being more mindful of my caloric intake or I will weigh 300 pounds by the time this thing blows over.

I’m sure it will blow over. It’s temporary, a season.

The pastor called last night. He said the Lord brought me to this area to minister to the people here, and to find life. Not to die. Amen.

The Man in the High Castle

I slept through most of the day yesterday and missed church. Sikki also slept in, having not slept well and enduring some pain in her ear. She went to urgent care and had it looked at: irritated but not yet an infection.

When I was awake, I watched several episodes of a show that is streaming on Amazon Prime: The Man in the High Castle. It’s based on a novel of Phillip K. Dick’s, published in 1963, and depicts an alternate-history scenario of what America might look like if the Axis powers had won WWII. I’m interested in the show because, where the characters in the story have to imagine what life is like without totalitarianism, I have to do the opposite. Within the first two or three episodes, one sees what life might be like if free speech were not tolerated, if Bibles were illegal, if citizens were forbidden to own firearms, if armed and aggressive agents of the state could simply enter your residence and search it on a whim, if the terminally ill or disabled were euthanized to prevent a “drain on society.”

These things could have happened. They have happened. They will happen again. Humankind has always been easily deceived by its own beauty, creative energy, good intentions. We think we can be like God. Humanism is the origin of enslavement.

This morning I go to the doctor for allergy testing. Sikki says she wants to go with me. I’m hoping to get enough of my lung capacity back to return to work and start exercising. I am gaining weight as a result of doing nothing for six weeks. I have been up since 3:30, so I imagine I might want a nap later. She and I are planning to go to Leland this evening if we are up to it.

No longer a thing seen but not to be touched.

Two o’clock in the p.m. on January first, two-thousand-sixteen. Stayed up late chasing white rabbits on Wikipedia: I read articles and would find two or three things in each that also seemed interesting, so I opened new tabs and kept reading. By the time the phone was inching closer toward my nose as my eyes crossed and I fell asleep, I couldn’t even remember what got me started. When I was a child I used to read real encyclopedias the same way — the World Books and Encyclopedias Britannica my father had purchased for me when I was in utero. Wikipedia is not as reliable, informative or satisfying as those weighty books were, but what it lacks in substance and truth it makes up with convenience.

I have had blurry vision for the past couple days. Screens and monitors resemble rippling pools and I keep wondering if I’m seeing a clever new kind of advertising. Eyes are drawn to movement, which is why online banner ads usually have moving parts. But even this current document window of black letters on a white page is whirling around on me, so I guess it’s just a trippy side effect of the Spiriva inhalant. I just found out this morning I’ve been taking a double dose daily for a week now.

Wherrrps.

I have to get out of this house today. There is a limit to being a heap of clammy flesh slumped in bed or a chair reading about life but not experiencing it. The doctors warned me not to exercise while I am having these pulmonary issues. But as Ralph said to Piggy in Chapter 1 of Lord of the Flies — the first novel I ever read which I really “got” in terms of motifs and symbolism: “Sucks to your ass-mar!” If you can get on your feet, you should. I’m getting to the point where I don’t care about distorted vision or bleachy-tasting yellow sputum or fatigue, congestion or malaise. Sucks to it all.

Watching a lecture about Franny and Zooey a couple days ago, I liked what the professor said at the start about making literary arguments. I liked it because it had spiritual ramifications, and a lot of what she said also applies to biblical exegesis.

Anyway, I’m going to the beach. Maybe I’ll find a conch…

Ralph had stopped smiling and was pointing into the lagoon. Something creamy lay among the ferny weeds.

“A stone.”

“No. A shell.”

Suddenly Piggy was a-bubble with decorous excitement.

“S’right. It’s a shell! I seen one like that before. On someone’s back wall. A conch he called it. He used to blow it and then his mum would come. It’s ever so valuable–“

Near to Ralph’s elbow a palm sapling leaned out over the lagoon. Indeed, the weight was already pulling a lump from the poor soil and soon it would fall. He tore out the stem and began to poke about in the water, while the brilliant fish flicked away on this side and that. Piggy leaned dangerously.

“Careful! You’ll break it–“

“Shut up.”

Ralph spoke absently. The shell was interesting and pretty and a worthy plaything; but the vivid phantoms of his day-dream still interposed between him and Piggy, who in this context was an irrelevance. The palm sapling, bending, pushed the shell across the weeds. Ralph used one hand as a fulcrum and pressed down with the other till the shell rose, dripping, and Piggy could make a grab.

Now the shell was no longer a thing seen but not to be touched, Ralph too became excited. Piggy babbled:

“–a conch; ever so expensive. I bet if you wanted to buy one, you’d have to pay pounds and pounds and pounds–he had it on his garden wall, and my auntie–“

Ralph took the shell from Piggy and a little water ran down his arm. In color the shell was deep cream, touched here and there with fading pink. Between the point, worn away into a little hole, and the pink lips of the mouth, lay eighteen inches of shell with a slight spiral twist and covered with a delicate, embossed pattern. Ralph shook sand out of the deep tube.

“–mooed like a cow,” he said. “He had some white stones too, an’ a bird cage with a green parrot. He didn’t blow the white stones, of course, an’ he said–“

Piggy paused for breath and stroked the glistening thing that lay in Ralph’s hands.