Jay again, just to let you know that Rebecca came home from the hospital tonight. She’s not feeling anything resembling well yet, but is at least better enough that the doctors decided she could ride out whatever this is at home. We’re very thankful.
This is Rebecca’s husband Jay posting on her behalf. She asked me to update you on the reason for the lack of recent posts – which is that she’s been hospitalized since early (very early) Saturday morning for what her team of doctors believes (after thankfully ruling out a host of more dire possibilities) to be a virus of some sort (aspetic meningitis is currently the leading candidate). No one has been able to give us a clear picture of either the etiology of the illness or a timetable for Bec’s release, but she does seem to be doing at least incrementally better today than she was yesterday, so we’ll hope for continued improvement. I know she’s looking forward to getting back to writing as soon as she’s physically up to it, and she wants to thank all of you for your loyal readership.
When I was a child, my Grandma and Grandpa Y. were very involved in the Meals on Wheels program. Once a week, they brought hot meals to shut-ins and invalids in Chicago. As a ten-year-old, I was fairly unimpressed with their efforts. I mean, delivering food is nice and all, but hardly glamorous. Now, I’d like to bop my ten-year self on the head for such arrogance and short-sightedness. There’s nothing like becoming a quasi-invalid and shut-in to teach me how heroic a dinner deliverer can be.
Putting food on the table is one thing I’m having a hard time doing these days. I can’t drive, which makes it difficult to go grocery shopping. I can’t walk, so even if I caught a ride to Safeway, it would be challenging to try to push my scooter and a grocery cart simultaneously. My husband, Jay, could hoof it to the store, but he’s been working long hours and has been on the road for his job. But even assuming groceries magically appeared on the kitchen counter, I can’t stand and cook. My scooter supports my broken foot and casted leg, but it’s not designed for ease of use in whipping up dinner. For instance, the other day when I was hauling carrots out of the fridge, I rolled over my own foot not once, but twice. Jay is a capable cook, but when he’s late at the office (like he has been most nights), he’s not able to get dinner on the table until Andrew’s bed time.
We haven’t been going hungry, of course. One of the benefits of living in a fast-food culture is that it’s easy to pick up pizza or burgers. But, we’ve got a three-year old at home, and there’s only so many times in a week I can call Dominoes without feeling guilty about the lack of nutrition I’m providing. Plus there’s so much media coverage lately about the role of early childhood eating habits in a person’s future health. With Andrew’s every bite of greasy burgers, I picture his arteries clogging, his blood sugar spiking, and I foresee an obese twelve year-old, lumbering between the sofa and the refrigerator. (Hey, I never said I wasn’t a drama queen – even in my fanciful dystopia)
When you get diagnosed with a chronic illness, you never imagine the kinds of new challenges that will come your way. It’s common sense to worry about medications and prognoses, but you would never predict fretting about your son’s waistline twelve years from now or about the likelihood of balancing on your one good foot to make dinner. But — as I’m sure other folks in chronic town will attest — it’s the little things that get you every time. The worst aspects of my illness, in terms of daily life, haven’t been the cardiac manifestations of my sarcoidosis. No, it’s been my crappy broken foot (that steadfastly refuses to heal) that has made getting around impossible and life feel almost unbearable.
Just when I hit what felt like a new low point, my cousin Susan called with an offer of help. She didn’t just ask me a vague, “Is there anything I can do?” or tell me that “I sure wish I lived closer.” Instead, she said that she wanted either to come out and cook and clean for us for a week, or she wanted to order some ready-made meals and have them delivered to our door. Susan’s generosity, especially in terms of traveling here, was doubly amazing, given that she has a host of health problems that make mine look trivial, along with a husband, two kids, and a house of her own. Jay and I talked and decided that because of my sister’s ongoing generosity in paying to have our house cleaned, our biggest challenge was simply in feeding ourselves. As much as we would have loved to see Susan (even though she lives on one of the dense and dark streets in chronic town, she is always able to see something funny and redeeming in a bad situation), we would take her up on the offer for meals.
The spirit of my grandparents lives on in Susan. We expected a couple of dinners. Instead, she and her husband Richard ordered us a month’s worth of pre-cooked, healthy food. No more burgers and pizzas for a while. They got us so much stuff they had to split the delivery in two. And we’re talking about meals that make my stomach rumble in anticipation just thinking about them: stuffed sole, penne with sausage, caramel apple tarts, sesame chicken. I know food like this doesn’t come cheap, and I also know that she invested hours in choosing the right entrees, arranging the delivery, and consulting with me. Her kindness has taken my breath away. It’s almost as if Grandma and Grandpa Y. have pulled up in their silver Oldsmobile, bearing trays of good food.
Susan’s greatest gift was letting Jay and Andrew and I know that we are not alone in this trying time. And my cousin isn’t the only one who has seemed more like an angel than a relative. Our lives overflow with good deeds, kindness, and generosity from our families, our friends, and even friends of friends – like the housecleaning from my sister; the seventeen frozen dinners my mother and father left us with; the loans from Jay’s father; the help with childcare from Jay’s mother; the novels that a friend of my sister-in-law sent me a while ago because she heard “I was the kind of person cheered up by books” and knew I was having a tough time; the kind and tear-provoking card from my other sister-in-law wanting me to know I was in her thoughts; the car my brother gave us; the Netflix subscription my friend Amy gave us yesterday; the dozens of dinners our Helena friends Martha and Geoff have made for us (not to mention Geoff’s on-site plumbing and carpentry work); my friend Roberta offering to do healing work; my massage therapist telling me she would work on my knotted neck for free (“I just want you to feel better”), as well as delivering lentil soup and an air filter to my door; my friend Molly driving me everywhere and even sitting with me in the ER… Sometimes I think I should be a whole lot sicker to justify the outpouring of goodness and help that we receive.
“We are so lucky,” Jay said, after I told him about Susan and Richard’s gift to us. That we are. From Susan – and from so many others – we’ve been given what my grandparents brought to those without hope and without dinner in Chicago. We’ll have full bellies, warmth in our hearts, and help when we feel helpless.
Sometimes I awaken in the middle of the night and can’t fall back asleep. Too often I let my thoughts swim deep. Will I be having surgery on Friday morning to remove an enlarged lymph node to check for lymphoma or other malignancies? Will the stress fracture in my foot ever heal, so that I don’t have to use a scooter to get around my house and my ass to get up and down the stairs? Will I ever get healthy, or will I merely lurch for the duration of a shortened life from one sarcoidosis-related crisis to another sarcoidosis-treatment related crisis (like the aforementioned biopsy for lymphoma)?
These questions keep me anxiously awake, with the darkness and my husband’s truly impressive snoring (I mean, the man gets tones and rhythms through his nose that rival a fourth grader on a bassoon) pinning me on the sheets. Tonight—or rather, very early this morning—I decided to hell with it! Enough with useless matters existential and eschatological. Letting my brain trip and tumble down these neurological paths isn’t doing much for my health, to say nothing for my red-rimmed eyes.
It was time to ponder the things that truly matter in my life.
In the hazy aura the night light creates I caught sight of my beautiful stationary bike across the room. We bought it just a few short months ago, so that I could try to regain some fitness without going to our germ-infested gym, from which I, with my highly compromised immune system, was catching every ailment and ague that blew through town. But with my foot locked in a hunter’s-orange cast and with various doctorly prohibitions against putting any weight or pressure on the bad foot, I haven’t been getting a lot of rides to nowhere on my recumbent chariot. My attorney husband, who survives by focusing on the small picture rather than the chaos that is his partner’s — and thus his — life, had hoped to deduct the cost of the bike on next year’s tax returns as a medical expense. But, if I’m not riding the thing, can we ethically deduct it? Since attorneys rarely overly worry about the spirit of the law over the letter of it, I never raised my moral concerns with Jay.
But with the revelations of tonight’s useful ponderings, I won’t have to choose between either irritating my spouse or abetting tax fraud because there, in the half-light, I saw that our three-year-old son had earlier removed the closet’s worth of clothes I was storing on the bike and had instead lined up a row of his favorite stuffed animals along the seat. I vaguely remembered him babbling at me earlier, while I was across the room, trying to ignore him (but not look like I was doing so) and finish my novel. “Here’s Sweater Bear and Chickie and Blumbie,” he twittered, as he lined them up. “Mommy. MOMMY. They’re going to the carnival to ride on the water-go-round and eat cotton candy. Mommy. MOMMY. MOMMY! And they need your bike to get some exercise.” There you have it: Sweater Bear (sans sweater, I might add) is getting a workout, even though I’m not. Take that, IRS Man. Would Sweater Bear doff his sweater if he wasn’t working up a real — and tax deductible — sweat?
There’s only so much thinking about taxes I can do without needing to pee. But getting around the room in my current state, in the same gauzy light that made Sweater Bear’s button eye cast off a manic gleam, is somewhat hazardous. Let me explain. I’ve said before that I’ve been confined to a scooter because I can’t use crutches. Most people hear the word “scooter” and think of something fun. Let me set you straight. Spend a few minutes at: http://www.rolleraid.com/. And, if like the pack of thirteen-year-old boys I encountered recently at a dinner party, you, too, still think my Roller Aid looks “cool,” let me assure you that 1) I hate you; 2) The scooter comes with a broken foot; 3) The scooter also comes with a free-wheeling three-year old who you have to beat him off your scooter to get a ride; and 4) You have to use (and turn) the thing in our house, which was designed and built by a man with no sense or any professional experience who did possess a love of corners, crawl spaces, and all things ninety degrees, as well as a virulent disregard for building codes.
I’ve gotten reasonably adept at operating my scooter in full daylight. I only fell over a couple of times yesterday. But when I’m tired, the light is bad, and I’ve taken a painkiller to ease the muscle spasms in my neck and shoulders from hauling the scooter around turns (and my body up our very steep stairs), as well as from the sharp pain in my never-healing foot that frequently catches my full body weight mid-topple off the scooter, let’s just say that all bets are off. I made it to the toilet and back (three sharp turns) and only wheeled over my good foot twice, but the harrowing journey did raise some more legal concerns. Is it possible to scoot under the influence (SUI)? Ever since my liver got eaten by the sarcoidosis, I’ve been forbidden to drink any alcohol. Our home is basically dry. But what if Jay, frustrated by me developing yet another ailment (I’m thinking boils is a good bet for my next affliction or, maybe, some type of plague), decides to drain the prescription cough syrup or make off with one of my painkillers, and then careens off on my scooter and really hurts someone — like Sweater Bear? Then what? Would the police take away his license to scoot? If so, I’m breaking out the codeine and taking out the stuffed animals. Guilty as charged, officer. Better confiscate my scooter!
If you find the thought of me toppling over en route to the toilet funny, you should spend some time watching me go up and down the stairs. Apparently, walking up and down them is a big taboo in the wonderful world of stress fractures. It has something to do with added flexion. We can’t afford to install elevators, so that means I either crawl up and down them or I sit on my butt and pull myself up and lower myself down with my arms. My father took one look at me doing the latter and said I looked like I was straight out of Andrew Wyeth’s painting “Christina’s World” (http://www.moma.org/collection/browse_results.php?object_id=78455). You get the idea. All this heroic-looking arm use was really aggravating my already-injured neck and arm, so the physical therapist told me to go buy knee pads and crawl. It was a good thing my Dad wasn’t still visiting. I’d hate to have a visual for this one. It wasn’t just my butt waving in the air. Worse was actually slipping down the stairs on the slick knee pads as I tried to ascend. (Remember our mad home builder? He also built the stairs on the steep side.) “Enough!” I shrieked, after a couple attempts. I ended up walking that time, before returning to ass-first ascents and descents. You have no idea how dignified I felt on my feet. As the dawn began to threaten the night, I wondered if it would be possible to install slides or ramps. Would these be tax deductible? Could I keep Andrew off the slides? Or would it be Sweater Bear monopolizing my route down and up just as surely as he took over my bike?
Somewhere in the middle of pondering the intricacies of ramp construction and whether I could help build a slide while on my scooter, my eyes began to feel heavy. Jay’s snoring had backed off from over-zealous beginning bassoonist to almost-soothing distant foghorn. Sweater Bear looked over sagely from the bike. “You can sweat the small stuff,” he seemed to say. “But it’s better to just go to sleep.” And then he pedaled off to the water-go-round and the rest of the carnival, where Chickie and Blumbie were waiting for him. I drifted off to sleep, with not a thought of lymphoma or surgery, only with Sweater Bear’s kind promise to bring me back cotton candy and a new foot.
Until this week, I didn’t realize the human body had so many tears in it. But on Wednesday night, I sobbed into my husband’s shoulder for about two hours. When I finally emerged from where I was lying, face down, his shirt was sodden and I had so many tears in my ear, I felt like I had been swimming.
Usually, I am not a crier. I’ve always thought of myself as a bit of a stoic—you know, I’ll take my suffering with a few sighs and a clenched jaw, perhaps, but certainly not with tears. But now, when mere acquaintances ask me how I’m doing, I start crying, and mind you, I’m not talking a delicate trickle of tears when I say crying. This is full-blown bawling. In the past few days, I’ve sobbed in two different doctors’ offices, on the phone to friends, with my parents, and repeatedly, with Jay.
Clearly, the landscape of my grief is shifting. Someone asked me why I’m so sad right now, when I’ve endured tougher times before without shedding a tear. It’s a good question. Maybe it’s because my broken foot (which I’ve now been forbidden from putting any weight on, including by driving my car) has made me a virtual prisoner in my home. I have to use a scooter to get around the house; moving among the three floors of our home means going up and down on my butt. All this sitting still means I can’t distract myself in the ways I have for the past three years. No errands, no slaving over complicated meals, no trips to the park with Andrew. I’m just here with my thoughts and my feelings. It’s as if the grief of my entire illness is catching up with me.
I am sad. There’s no other word for it. I acutely feel the losses that sarcoidosis has brought to me, to my husband Jay, to my son, Andrew. It’s hard to believe that four years ago, I could hike up mountains, paddle twenty miles a day, and stay up all night writing a book. Now, I can’t walk across a room. I can’t cook a meal for my family. I can’t bathe my son. The optimists in my life remind me that I only have four more weeks in this cast with its attendant weight-bearing prohibitions. They’re right. But this sadness is much deeper than being stuck at home. This is the grief I feel in my bones for losing the person I was. This is a fatigue at having been constantly sick, in one way or another, for nearly four straight years. My son has never known the person I was before I was debilitated by both my disease and the toxic medicines used to treat it.
Next week I will likely have a lymph node removed to check for lymphoma. “Aren’t you terrified?” a few people have asked. Honestly, no. I am too tired and too sad to even much care about the latest in what feels like a never-ending series of medical crises, scares, and reports of bad news. Until I need to deal with it, I’ll just plod along. Or, rather, scoot around.
I think this sadness is good for me in the long run. I think it is long overdue. A wise person told me that I can’t learn to live a happy life again until I mourn the losses that both I and my little family have endured. I hope all this sobbing is part of a natural grieving process. Sometimes I get scared that the grief will swallow me up and never return me to myself or my family. But, honestly, I think there was a greater risk in my functional numbness and fake cheerfulness destroying me, than in these tears melting me.