For the fourth time in four years, Honey is in the hospital. And he has been for most of this month. Again I spent almost 30 straight hours in the ER with him waiting for answers: Lying on a window sill countertop trying to snooze, leaning on various uncomfortable chairs in various waiting rooms while he has test after test. Eating crap food from the cafeteria. Feeling helpless as I watched him in pain and frustration. Hearing a renowned specialist say he doesn't know what's causing the pain -- in the 7,000 endoscopies he's performed, he says, he's not seen a case like this -- but they're going to attack it more aggressively now. I wonder why they didn't attack it more aggressively 2 weeks ago. Why can we never get one step ahead of this illness or out from under its financial burden?
I am willing my feet to step out of his room now, to go back to my children and my life and try to be normal. I can't help wondering when I leave him here in the evening what condition he'll be in tomorrow when I come back, or whether I'll see him again at all. Should I come back tomorrow? Is this healthy for me, to just sit here day after day while he sleeps in a morphine haze?
Right foot. Left foot. Right foot. Every hospital looks the same. And I've seen them now in North Carolina, Delaware, Pennsylvania, New Jersey, and Maine. Long corridors. Shiny surfaces. Light blue and yellow walls, beige linoleum tiles on the floor. Cheerful signs at each turn reminding me to wash my hands. Acrid bodily smells reminding me why.
I am willing myself to walk out to the parking garage. To stand upright in the face of my fear.
It’s been over a decade now that he’s struggled with this illness, and although it’s his body that’s wracked with pain, it’s taking a toll on my body, too. My shoulders seem permanently tight with worry. He complains of a stomach ache and I sleep lightly, in case I’ll be awakened in the night to call an ambulance. I watch him calculate every bite of food he puts in his mouth, wondering if this is the one that sends him into another attack. I worry about my sons - do they carry the genes for this condition, too? I hate his father for passing it to him. It’s irrational, yes, but I hate his father for his genetics as well as his weak character.
Also irrational is the anger I feel toward my husband. I am angry about how his illness affects my life. I am angry that our children are growing up with this uncertainty. This was not exactly what I had in mind when we vowed “better or worse, sickness and health” — that was supposed to come much later, after we traveled and put our kids through college and played with our grandchildren. I am angry that our peers haven’t had to face such illness and disruption as many times as we have; they don't know what to do for us, how to help or what to say. I’m angry too that we can never be more than an hour from a hospital. I am angry about the financial toll this takes; every time I think we may finally be out from under debt, another heaping hospital bill piles on. We can't make a plan for a vacation without that small voice whispering doubt. My brain knows it’s not his fault. He has tried especially hard these last two years to be healthy - he has changed his entire lifestyle, he has lost 100 pounds, he sees specialists every 3 months to check in. Yet he is sick. Again. Still. And it hurts me, too, and I'm angry.
In the weeks since this latest bout started, I have argued with doctors, I have kissed up to nurses, I have cried in the lobby listening to the elderly pianist playing show tunes. I have called Honey's boss, filed for his short-term disability, combed through our bank account to ease our budget woes while he’s out of work. I have planned for daily childcare so I can spend time with him in the hospital. I have canceled vacation plans and missed my cousin's wedding. I have worked for two weeks by his bedside, pushing back my own deadlines so I can be there when a too-busy doctor breezes in to give us over-simplified explanations that don't make much sense. I have prayed words that didn’t really mean much because I don’t really know what to pray. I have held his hand as he writhed in pain; I have wondered over and over “is this the one that kills him?” I have tried to encourage him even when I feel completely black inside. I have kept family and friends abreast of each development, repeating the same things over and over. I have asked questions and read medical articles and borne the brunt of his frustration. He yells at me because I’m strong, you see. So fucking strong.
Ten times he has been hospitalized in our 17 years of marriage. You’d think I’d be used to it by now. But this is the most anxious and sad I have ever been. Tomorrow begins the third week without him at home. I wake up every morning feeling empty; I can only sleep at night with the help of a cocktail or a pill.
Right foot. Left foot. Remain standing for just a little while longer. Pretend everything is fine so your children don’t worry. Hope that someone will offer to help with the kids, regret that you moved so far away from your closest friends who always knew what to do without you asking. Wish you lived closer to your family so you didn’t feel so much guilt at asking them to stay in your crappy guest bedroom another week. Try to be present for work meetings even though you can’t focus on anything but trying to solve the medical mystery your husband has presented. Pay the bills. Make the lunches. Feed the cat. Fold the laundry. Take the kids hiking on a beautiful day, even though you just want to lie in bed with the covers over your face. Preserve as much normalcy as possible; this may be a while.
I am so tired.
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