I was listening to Barenboim play Chopin Nocturnes yesterday evening, and I think everyone loves No 2, so I’m sharing it as a soothing soundtrack to this post (see below the post if you’d like to play it while you read). I’ve been in hospital for surgery on my esophagus — an innovative surgery called POEM for a rare disorder called achalasia. If you are interested in achalasia or POEM or are close enough to me to be interested in details of my medical journey or to have questions as you read this, I will tell something about that at the very bottom of the post (after Chopin). The surgery was possible very suddenly last week with almost no notice (after months of getting to this point and having been told we would have six weeks’ notice), so we did it. I include here a photo I took the night before from Westminster Bridge (the hospital is just across the Thames from Big Ben, which like me is being repaired at present, and we had to arrive the night before and stay in hospital accommodation because I was the first patient of the morning) and the view from the day room on my ward early on my first morning after surgery; my own room looked out over the London Eye, which is on the same bank as the hospital on the other side of the bridge. Here is the actor Tom Hollander reading the Wordsworth poem “Composed upon Westminster Bridge” on BBC Newsnight.
The surgery was on All Saints Day, which a friend pointed out was a good day to have the Great Cloud of Witnesses standing watch over me, and I am sure that at least three of them did — Momma, Daddy, and Uncle John (because he is a surgeon and would find POEM interesting and know just how to lend a hand). So it was an ecclesiastically festive day for surgery. And the good thing about our not knowing it was coming was that we had a peaceful pre-surgery weekend with walks in the autumn sun through a farm in our village pictured in the main photo at the top.
I’ve not wanted to talk about this much as I moved through the particular challenges leading up to the surgery in the past seven months. Initially there was a good deal of uncertainty. I wasn’t sure precisely what was wrong, and I had to discern how best to get help and to research doctors and hospitals and make decisions with insufficient information and at a time when I least felt like it, and none of those things are strong points of mine, so this period will either have stretched me in a good way or left me with a limp, or maybe both like Jacob. There was also the challenge of not being able to get solid food down, and I didn’t at first know how to deal with that, so I was actually hungry, which was novel and taught me quite a lot (an interesting topic for another day). Meanwhile I intensely dislike calling doctors, and trying to navigate the health system in another country compounds that – also trying to explain the health system in another country to people who are concerned for me when I don’t feel well. I found that what helped me deal with my symptoms and my dietary constraints and the uncertainty of the wait and not knowing what would happen at the end of it or when the end would be – what helped most was giving myself as much time as possible to attend to other things, the sorts of things Paul suggests in Philippians 4: true, honorable, just, pure, lovely, admirable, excellent, praiseworthy things. (Some time I’ll tell you how I remember that list – also for another day.)
I also needed time to process the past nearly two decades of my life with new understanding (again, see below if you know me well enough to want to know about this). There are ways we accommodate what we think cannot be helped, and based on what I had been told and the lack of interest by the GPs to whom I mentioned it here, I believed this could not be helped in any satisfactory way. I needed to let all that settle down and to think it through — sitting among books and cats and watching spring and summer and autumn unfold in the garden and walking through fields with the Yorkshire lad and singing and communing with cows and spending time with other kind souls in silence or prayer or talking of other things while my mind did its quiet work — those are how I ponder things in my heart.
We all know that joy and hope help with all of everything in life, so I determined as a matter of urgency to look for whatever fostered those things in me (I came upon this accidentally — I was praying for a dear friend to have those things, and my prayer had a boomerang effect, and I realized those were what I needed as well and that I got them best not by seeking them directly but by doing things that made space for them in me and allowed them to blossom). Feeling that I mattered to people and that they loved me, of course, helped (like that scene in Babe when Babe is sad and cannot eat and the farmer sings and dances for him), and people who love you and to whom you matter tend to make you feel that way even when they have no idea you are struggling. Prayer was wonderful, prayers for joy and hope for my friends and for the world, and prayers for nothing in particular – being prayers – prayer without ceasing. Prayer (however that looks for you, and it takes many forms for me) is always a joy, but maybe it is a special sort of gift in thin places (also a topic for another day).
As an official aside, I will add that the only way I can write this is if I don’t try to do more than I can do, and I keep leaving and returning to this, so in addition to whatever flaws it starts with, I’m no doubt adding more each time I come back, which is why at least for now I’m going to share this with tangents and parenthetical comments, which people who exchange emails with me will know is how I write before I fix it. People who’ve talked to me know that this is also how I talk unless I write down what I am going to say first. But I am making the effort to share something because word is spreading among people I love, and I haven’t the energy to explain it to everyone individually, so I am attempting this and offering it as an unpolished gift. And to be clear, unpolished for me also means too long. Short is hard for me, not long, so when I say “I cannot do much,” it means that I cannot be short. And, again, I’m alleviating some of the problem of length by moving some bits (the bits have expanded to the length of a small novella) below Chopin, so you can read there about achalasia, POEM, and how things have been for me if you are interested.
I’m home now being nursed by the cat (she doesn’t leave me except when she absolutely must) with help from the Yorkshire lad because he has opposable thumbs.
While in hospital, I at first didn’t listen to music at all (this is where I began – with Chopin – almost everything between here and Chopin was added in as I returned to this ever-lengthening stream-of-consciousness post). The first thing that helped was Gould’s later recording of Bach’s Goldberg Variations. Gould fans will know that the earlier recording (which I always think is my preferred one until I put on the later one, and then I think that is) goes lightening fast. It makes my brain sparkle, and it feels very clean (I do not use that word in any musical sense if there is one – I mean it makes my brain feel sparkly and clean). I have also listened to the Schiff recording since I got home (I started listening to that one only recently because my friend Mary brought it to my attention, and what I like about it is that it is totally different from Gould – where Gould makes everything sparkly and clean, Schiff’s interpretation is floaty and flowery, again not in a technical, musically informed sense if there is a technical sense for those terms – also he does the repeats, and I like that too). But what got me through the second night in hospital was David Bowie (I will not post the Bowie songs that helped most since not everyone will love him, and I don’t want to alarm anyone, and this too is something for another day, but if you are a fan, I’m glad to share that information). I recommend Bach and Bowie for esophageal surgery recovery — also Botha – not a musician as far as I know although he could be, but another B, so he comes to mind: my surgeon Abrie Botha.
Abraham Jacobus Botha was the poet, or POET, of my esophagus (one could do worse than have two patriarchs evoked by the name of one’s surgeon on All Saints Day). I cannot read his work in myself yet (it will take time for me to know what my revised esophagus is like; achalasia is not curable, but if this is successful, one mechanical problem may be eased, at least for now. I’ve seen on an x-ray the unruly clamps that mark the spot, and I like their unruliness. But they are not the essence of the POEM. They are, one might say, a provisional title for it. They are what hold together the place where the knife began, where it cut through the mucosa, the soft inner layer, to the muscle and began its way down miraculously (because how does someone do that without a series of small miracles) to the place where the muscle has been holding on for dear life, where the esophagus meets the stomach, and there the knife wrote the final verses, which are so often the best part, and in the case of this POEM are the whole point.
“And miles to go before I sleep, and miles to go before I sleep.” “More than those who watch for the morning, more than those who watch for the morning.” Maybe my being reminded of those two particular poems (Frost and Psalm 130, of which it turns out that is not the last line, but I think it would be a good last line, so I’m leaving it here) means that my esophageal poem has that sort of ending, with a double measure of yearning (“Is there anything more important than hunger and happiness?” as Mary Oliver says in “Writing Poems”). Or maybe those came to me because I have promises to keep and because I am hoping. But there are so many good last lines, which came to me almost as soon as those: “And then my heart with pleasure fills and dances with the daffodils.” “Because the Holy Ghost over the bent/World broods with warm breast and with ah! bright wings.” “nobody, not even the rain, has such small hands” I could go on and on, but I won’t, and I’m not mentioning any of the sad ones. I’m sticking with yearning and dancing and the Holy Ghost’s ah! bright wings and the small hands of love that open and close. Do feel free to share your favorite lines (or middle lines as in the case of Psalm 130 and my quotation of the middle of a Mary Oliver poem) in comment boxes below, and I will say them to my sphincter as it heals, and others may wish to speak them to their parts that are in need of healing poetry. I don’t know anyone who doesn’t have something broken. Physical or otherwise.
To return to the clamps I was able to see, they will probably fall away. They are not the POEM. They are a sign that the writing of the POEM has begun. Abraham Jacobus has done his part of the writing (for the moment, at least). But whatever he wrote, now it is up to my body to reknit itself in its own way as we are always knitting the tapestry of ourselves day to day (one must weave a tapestry, mustn’t one, but I’m already mixing poems and knitting — in my current condition I shall, like Humpty Dumpty, make everything mean whatever I choose it to mean), choosing what will go into the pattern from the choices before us (which are so gentle for some of us, like me, and so harsh for others, which is why we must love one another as well as ever we can, which reminds me that it is Dorothy Day’s birthday today, and she was all about love) and the choices within us, which are infinite and from God. I choose now the leaves outside the window, which are a late autumn mix of yellow and green. I choose the cat’s soft fur in shades of brown and cream and her heavy warmth against my legs. I choose love. These I choose to feed myself today and weave into the poem that is my life.
Even when we are beyond choosing, the poetry God sets in motion in the womb-knitting work of our creation and which we hear God whispering to us when we are still and sometimes when we aren’t – that poetry will keep writing itself. When we have nothing to give, still the knitting and the poetry move in us until some day the poem is perfectly perfect. But even now it is perfect in its own way, my POEM with its unruly clamps, yours with its unruly beauty, the world that is all so fearfully and wonderfully made and so vulnerable. The knitting in process, the poems being written, all the souls with their ever-emerging tapestries are already good because they were set in motion by love and are sustained by grace now and into God’s vast eternal life. No matter what.
I am going to rest again now, which is one of my jobs.
The cat’s job is to stay close and keep an eye.
* * *
Here begins the extra-long version of the tale. This is for those of you left with questions, those of you who are close to me and want to know more (you can decide how much more because there’s a ton of more here), and those of you who are interested in achalasia or POEM. If you do not fall into any of those categories, I recommend you stop while you’re ahead. As I said above, I don’t have the energy to be short, and I’ve had to write this in little bursts over the course of several days, so it is Very Long.
* * *
When I say that achalasia is rare, I mean that 1 in 100,000 people have it, and doctors, like the rest of us, cannot know what they don’t know, so I’ve lived with it a long time as it worsened. I first told a GP in 1996 and then another some years later and then a gastroenterologist and then a second, and the second one in 2004 did the tests that showed I had achalasia, but he concluded I did not have it based on my endoscopy, which is not a diagnostic tool for this disorder (although it is necessary to rule out cancer, which has a similar list of symptoms and is slightly more common in people with achalasia). But this was before we all diagnosed ourselves online, and I believed him since he was the first person in eight years who had explained the mechanics of the problem (the mechanics are that I have no peristalsis and the sphincter at the base of the esophagus does not open to let food into my stomach — they do not know why people get this, but it can be triggered by an illness, they think, and I had a mystery illness after a trip to Japan for Coca-Cola the year before this began, which left me noticeably less robust). Knowing the mechanics of the problem (and that it wasn’t something sinister) was in itself a relief. He said nothing could be done (which was inaccurate; there is no cure, but surgery to relieve the inability to get food into the stomach has existed in some form since 1911) but that once I could stand it no longer, they could stretch it further (dilatate it, we say in the UK — dilate with an extra ta) and risk tearing it. As it had been stretched twice before by the first gastroenterologist to no avail, I walked out of his office resolved to live with it as long as I could. I also left not understanding some of my symptoms (waking up in the night choking, spasms in my chest that felt like heart attacks, which I have always euphemistically referred to as heartburn, both of which are symptoms of achalasia, which was the one thing I had been told I definitely did not have). Shortly after that I moved to the UK. I have mentioned it to GPs on several occasions, but the only way you get referred to a specialist (we call them consultants here) in the UK is if you make a big deal of the thing or complain a lot, which I never did, or if you clearly look ill, which I never have because I have always been a healthy, constitutionally happy person — “healthy as a pig,” as Momma and Aunt Sally would say (every photo on this website is of me, healthy as a pig, with achalasia).
I love to eat, so no matter how challenging it became, I looked forward to it with tremendous enthusiasm and persevered (this is not true of some people with achalasia — meals become a time they dread, and some are misdiagnosed with eating disorders). I eat well and do exercise I like (I like exercise that is completely masked as something else, like walks through meadows and bluebell woods and dance and yoga) and have the
gentlest life imaginable, so I could work around this in a way that most people could not. This gave the illusion that I was fine, which in a sense I absolutely was. But I also felt relieved if I could sleep as long as two or three hours at a stretch without being waked by choking or coughing or to go to the bathroom. I had to allow many hours to finish swallowing every meal (not to eat it but to finish getting it out of my esophagus) and could not eat away from home without access to large amounts of water. I could not pick up a snack and eat it while driving or have an impromptu picnic with a festive bottle of wine (on one occasion at a conference when I was trying to blend and ended up with access to nothing but wine and therefore could eat little while still needing to drink more than I was accustomed to, I ended up wobbling back to my room and calling Robert on FaceTime to report that I thought someone was asking me to write a book but wanted to tell him everything I thought had been said in case I forgot because I’d drunk so much — that was, in fact, when I was commissioned to write Embodying Mark), and if I were at a festive church event with scones and tea or slices of pizza or at my own wedding reception, for example, I could not eat even a piece of cake or an hors d’oeuvre without a big glass of water (I could have a polite bite and let it sit there in my esophagus until I dealt with it later, but anything more would cause problems), so I would have to request water, and if I didn’t have enough (because how can one explain this to busy people), if I were given a small plastic cup or a lovely half-filled crystal tumbler, which wouldn’t be enough water for me to get down a communion wafer, I would end up standing discreetly somewhere out of the way with food stuck in my sphincter and waves of nausea passing through me. Airplanes were difficult (I typically lug four bottles of water on the plane because it is so hard to explain to even the nicest flight attendants that I need the amount of water I need and that I need it before I eat) and having to request extra water from hostesses at dinner parties has always felt like an imposition. In groups where people didn’t know me well, kind neighbors would have no idea what my quiet murmuring about an esophageal motility disorder meant and would say genuinely thoughtful things like, “The food is awfully spicy.” or “So good for you to drink lots of water. I should do that.” or “My elderly aunt gets things caught in her throat.” or “Perhaps if you took smaller bites and chewed more.” And I would smile and nod and agree and thank them because I understood that it was mysterious and that the phrase “esophageal motility disorder” makes the eyes glaze over (it makes mine glaze over).
Everybody has something, and most people’s somethings are far more serious than this, which is another reason I’ve not talked much about it. A disorder is not a disease, like diabetes or cancer (nor is it a hurricane or a sick child or a boss who harasses you). I have had a broken esophagus. Like a cat who learns to walk on three legs matter-of-factly, I have adapted to this as it went along. The difference is that the leg is gone while I have had to continue using this body part in order to live, which means that the disorder has worsened, in the first place, but also that I have had to use a body part that doesn’t work, so I’ve had to live with the dysfunction that accompanied that. But as long as it was possible to get food down in some way, I happily coped with it in a way that a person with a disease cannot because the disease itself will kill her. Also for the first years of it, it was relatively OK. It was possible to know me and not even know something was wrong. By 2004, this was no longer the case – I had even changed my wardrobe by then. All of my clothes were either stretchy material or had an elasticized waist because anything binding makes it harder. I now don’t wear a bra either – I swath myself in scarves (a good reason to have many scarves).
The other reason I didn’t talk about it in the past was that I genuinely didn’t think about it. Like the cat walking on three legs, I just did it and didn’t dwell. In these months since I started trying to get help, it has been so not festive to have to focus on this. I spoke some months ago with another person who has achalasia (the first time in my life I had done so – although I think that last fall I came across an elderly woman at a Cracker Barrel who had it – she was at the next table with her daughter – they’d finished their meal, and she had a glass of water and was sitting there looking effortful in a way I recognized, and she was coughing in a way I recognized, and she looked worn out in a way I understood, and I asked how long she’d had it, and it had been since she was a young woman, and I told her it was probably an esophageal motility disorder and that I understood how she felt, and that was actually the first time I’d ever felt a sense of camaraderie with another human being about this thing). The woman with achalasia (I’m back to her after my tangent) had surgery some time ago, and she also has no desire to focus on it, to be in a support group, to think about it. But she had great sympathy for me, and I had great sympathy for her, and it was very confusing because no one had ever understood or been sympathetic in quite that way, and it almost unnerved me. I could hear how bad it had been for her, but it was very difficult to see that I had also had that experience for years and years.
I believed that when I finally got help, it could be the end of eating for me or it would be “eating, but not as we know it, Jim.” So I waited as long as I could. I did ask my GP for help in 2009 (I believed it was 2011, but the records I’ve been carrying around with referral letters since March say 2009). I sat beside him tearfully and told him about the problem (I had told him before but not tearfully), and he said we’d do something, but he thought he should first send me to a urologist because I was urinating so often. In retrospect it is obvious that this was because I was drinking many liters of water a day for the achalasia, but he didn’t grasp this, I guess (in his defense, GPs are extremely overloaded on the NHS — GIVE THE NHS MORE MONEY — and I am positive that if I’d come back in a year and asked again for a referral he would have given it — also he may have felt I needed time to get used to the idea of getting help, given the tearfulness, and he was probably right, but I never asked him again) – he didn’t even write down that I had an esophageal motility disorder, only that I had spasms, which are one of the symptoms. After eight months of trying to get through the process of tests for the urologist, which was a comedy of errors for one reason and another, I understood that whenever I did try to work out my esophagus, I needed to find a better way, even though I didn’t know what that would be. As minister of a church, I saw the challenges people faced in getting medical attention, and I also accompanied my husband through two surgeries he had, one of which didn’t go entirely to plan, and the more I saw, the more I realized I would have to try to manage the process with care because if it had taken eight years in the US, it could go massively awry here if I didn’t figure out what to do.
I broke my hand last year, and I tried going along with the system, and I finally found someone to see privately, and I wished I had done that to begin with. So I learned something about what would need to happen with my esophagus.
When I finally couldn’t adapt any more because no amount of water was forcing food down, and I was doing more and more to accommodate it while less and less was working, I found a gastroenterologist-surgeon in Oxford who specialized in esophageal motility disorders (this took me forever to do, and I was uncertain about it to the end, but he was wonderful and an answer to prayer) and paid to see him (that is another way to get a referral). In April of this year, after almost two decades of misunderstanding, I found out that I had achalasia (the one thing I was told it could not be), and that this one word explained all of it.
I had already begun to suspect this in the month before I saw him after I called the hotline for an esophageal support group in hopes of getting a recommendation of a doctor. The volunteer who answered (she was another blessing) realized that I either had cancer or achalasia, and she sent me an information packet about it, and I could see that it sounded correct. That is also how I learned about surgical options.
The normal surgical option is Heller myotomy. This is laparoscopic surgery, which involves five incisions to get the tools in, and then the surgeon cuts the sphincter from the outside. This is often done with a procedure called fundoplication, in which the stomach is pulled up around the esophagus to recreate a kind of barrier between the esophagus and the stomach. This is to minimize the risk of reflux because once the sphincter is permanently open for food to go in, it is also permanently open for acid to come up.
POEM (Peroral Endoscopic Myotomy) is a new, innovative version of Heller myotomy, which was developed in Japan in 2008. Rather than going in laparoscopically, the surgeon works from the inside out, endoscopically. As I described above, this means cutting through the mucosa (the soft inner layer of the esophagus) midway down to get between that and the muscular outside layer (this they do after they pump you full of carbon dioxide, which the anesthetist told me would make me feel wretched and make my skin bubble up like the Michelin man – I missed the bubbling skin sadly). Then the surgeon proceeds down to the sphincter and cuts along it to disable it (this sounds impossible to me, and I view it as a miracle – that it is possible at all, that I found out about it – because it is so new that the surgeon I saw in Oxford didn’t mention it until I asked – and that it has now happened). Then the surgeon comes back out and closes the mucosa with metal clamps. How it is even possible to get clamps, knife, camera, and whatever else is required to go through a tube into my esophagus while another tube was going through my mouth into my windpipe is also beyond my imagining. I did read on the Mayo Clinic website that you want someone highly experienced because if anything goes wrong, a less experienced person won’t know where he or she is, much less how to fix it.
The Oxford surgeon I saw first is also highly experienced and warm and helpful. I left him feeling immensely reassured because he was almost certain it was achalasia. He does Heller myotomy but stopped doing fundoplication years ago. Fundoplication is also done for reflux (reflux on its own, not due to surgery for achalasia), and I read about it on a reflux website and saw that the risk is difficulty swallowing, and that was the point the surgeon made. When you are doing a procedure to open up the sphincter, it is counterintuitive to do something that recloses it. In addition, not everyone will get reflux, so it is extra surgery for which some people have no need. If reflux is an issue (and it can be a massive problem for some people after the myotomy), it is possible to take a PPI for the rest of one’s life. Also, it is possible to have reflux even after fundoplication. But if you are reading this as a person who also has achalasia, I encourage you to choose the option that is most reassuring and sensible to you.
When I asked about POEM, my Oxford surgeon said he didn’t do it but that it could in future become the gold standard (is that the phrase one uses – I cannot remember). The problem for now is that, in the first place, because it is so difficult and almost no one has achalasia, almost no one does POEM (at least in the UK — there is more of everything in the US — more achalasia because more people and more surgeons who treat achalasia because more achalasia). In the second place, there are no long-term results to assess because it has only been done since 2008. Once the whole diagnostic process was finished in June, my Oxford surgeon recommended Abrie Botha. I was given an appointment in September, but I called every day until I found a cancellation for July (I tell you this in case you are in the UK and like me hate making this sort of call — the people on the appointments line will tell you if calling is useful, and they told me it was). Mr Botha was warm, enthusiastic, positive, and determined. He said that if this didn’t work, we would keep trying. I hope he meant that. But it would be awfully nice if this worked to begin with, and I am convinced that if anyone could make it work, he could.
Robert and I chose to go with POEM for a number of reasons (I say Robert and I because by that time I was so weary of the whole thing that I needed his help in deciding even though he wanted it to be my decision). Mr Botha was so positive about it, and that was important. I asked Mr Botha and his assistant doctor fellow Ravi each what they would suggest I do if I were their mother, and they said they would tell me to have POEM (and I believed them). Mr Botha is also an esophageal specialist, not only a gastroenterologist capable of doing endoscopic surgery, and that was also reassuring because it meant that if something did go wrong (perforation, for example) he was a good person to have in there.
I liked the idea of having surgery endoscopically because it seemed to me that if something didn’t feel right in future, there would be more chance of someone doing an endoscopy to have a look than there would be of someone doing another laparoscopic procedure (and I wouldn’t want another laparoscopic procedure anyway, but an
endoscopy is not such a big thing). It also seemed worthwhile doing something that contributes to the future treatment of the disorder for others, and it interested me that it was innovative (it makes it like watching a documentary, which distracts me from the fact that it is I on whom the documentary is being done). Also, both of us liked the feeling of the hospital. The waiting room had glass walls on two sides and a glass ceiling and was full of light and made me feel hopeful. And there was that affirming print behind my chair. And Mr Botha’s enthusiasm and determination. And the Oxford surgeon, whom I trusted, had recommended him highly. And we could hear Big Ben chiming the hour from the waiting room. So we decided on that.
Mr Botha said it would be a wait of two to three months and that I would receive a letter six weeks in advance. In fact, I heard nothing for three months and finally wrote to him, and his secretary assured me I was on the waiting list. When I did finally hear, I was given two day’s notice (effectively one day’s notice because we had to go down the day before on the train). But we were desperate since my condition had continued to worsen, and I was told the next definite date was January (so the two to three months had turned into six months unless I accepted that the six weeks’ notice had turned into one day). The advantage of having no notice was that instead of spending six weeks thinking about it and doing preparations that I didn’t need to do and acquiring things on the hospital list of things one needs, which in fact I did not need, and then spending the final weekend making the house surgically clean, which I would have wanted to do, we spent the pre-surgery weekend taking long, gentle walks in autumn sun. The photo at the top of the post is the place where we walk in our village.
The most important thing was that our cat sitter, Marion Pegge in Anstey (she also takes care of horses), made herself available (and made it so that any length of time I was in hospital was OK) for two visits daily to our cat and three not-our-cats, and she didn’t even let me pay her.
I am not going to tell you about the hospital experience (on which I could write a book), except to say that NHS hospital staff are heroes and GIVE THE NHS MORE MONEY because even with the heroic efforts of the hospital staff there are not enough of them (not by a long shot), and they need much more funding to do their good work of love. Nor will I talk about how I am now (which is not interesting and ever-changing), except to say that the miraculous POEM happened (one risk was that he would get in there and find it was not doable), my esophagus was not perforated (the most serious risk – and how they manage to do what they do without perforating it is beyond me), and I assume if it were infected (the third major risk), we’d know by now. So hooray for all of that.
The three tests they do to see if you have achalasia (in case you think you might) are manometry (this is the most specific to achalasia, and it showed I had the disorder in 2004 when it was first done on me) and barium swallow x-ray (this also showed it in 2004 but not perhaps when I’d had it earlier in the course of the disorder – that is why manometry is most important). When I had the barium swallow test in May, the barium swallow goo would not go through my sphincter. Two days after surgery, it would. My sip took 15 minutes to get through to my stomach, but it did go (with a little help at the end from a sip of water). I regard this as a very hopeful beginning.
Now we wait.
My primary challenge in the past seven months, alongside navigating the medical system, which was nothing like the experience my American friends were expecting me to have and nothing like what I was used to in the US or even what I expected to happen here given the severity of my condition at that point (but I will remind all of us that although I easily got in to see two GPs and two gastroenterologists about this over a period of eight years in the US, none of them diagnosed it, and the final one specifically said it wasn’t what it was) – what I was saying was alongside that process, my primary and more immediate challenge was getting enough nutrition. I had realized that my condition would eventually become untenable and would hit some kind of wall, but I didn’t know what that wall would look like, and my esophagus didn’t send me a letter informing me that this was about to happen (although something that progresses over a period of nearly 22 years cannot, I realize, be called sudden). I assumed, once someone saw how urgent it was, that the system would kick into gear, and I would get help. Robert, who is British, and his family also assured me that this would be the case, that once I got things rolling, it would all fall into place. This was absolutely not the case. Had I given up or not had the wherewithal to handle the problem (with Robert’s help) and therefore ended up in hospital emaciated and unable to survive, the system would have kicked into gear, I’m sure. But because I looked healthy and sounded healthy (and even when I had lost 10 pounds, our society’s idea of what is attractive is such that I actually looked fashionably thin and not underweight, even though my BMI had fallen below the normal range – I now look at women on telly and realize how thin many of them are and wonder with some concern about how they stay that way) – because I looked healthy and sounded positive, I wasn’t an emergency.
I sought help from a dietician in early May. (Once I had been referred, my excessively busy [because GIVE THE NHS MORE MONEY] GP considered anything to do with this to be the problem of the consultant, while the consultants, both of them highly skilled surgeons who are much in demand and not only for cases like mine but for urgent cases of esophageal cancer and other life-threatening things, considered anything not to do with surgery to be the job of the GP, so I have been mostly on my own in the in-between times and am now as well – I came out of hospital with minimal information about how to proceed. My liquid diet is not their job, of course. Their job is performing impossible feats with knives and cameras, and I respect that. And Robert and I have had seven months to become experts at all levels of liquid food — thin liquid, medium liquid, and thick liquid — but I do worry for people who aren’t experts and don’t have Robert, a good blender, or indeed a faithful cat.) To return to May before we were experts, I had lost weight gradually in April in spite of my best efforts (how one thinks about food in normal circumstances doesn’t apply in abnormal ones, I now understand) — the dietician gave me invaluable assistance, which saved me, and I was able to regain and maintain my weight after that no matter how bad things got, even though what I could get down was getting more and more limited. If you need advice about this, I am happy to tell you what little I know, but I encourage you to find a dietician (it is called a nutritionist in the US, I think) if you can. When you look up liquid diets online, you discover that the whole world is trying to lose weight. This was also my conclusion as I walked around the grocery store looking for things I could get down. I’ve never been on a diet, so I’ve never noticed all of it. But it is everywhere, and it is sad to see it, but this too (my thoughts on eating and food and hunger) is for another day.
I will say one word to those needing seriously liquidized food (not festively liquid like smoothies, but truly smooth, truly liquid) or wanting to make baby food: Vitamix. My friend Mary (not the Goldberg Variations Mary but @WineFashionista Mary — she knows everything about wine and also, it turns out, blenders)
recommended this to me. It took me a long while to stomach spending that much for a blender, but I read every review on earth, and if you’re serious, that is what you need. We had before then been using a Philips hand blender, which has done yeoman service. It was the sort of appliance you keep on a shelf you cannot reach and only vaguely remember you have (because we don’t blend), but it was a good thing. Aunt Sally bought it for us one Christmas. It has withstood a lot of blending in these many months. It deserves a medal. Even once I had the Vitamix, we continued to use the hand blender for some things, and we still use it. The Vitamix is a 2-horsepower pulverizer. I, non-chef that I am, love my Vitamix. Robert is the true chef of the household, but the Vitamix has remained my domain and mine alone.
I cannot think of what else loved ones or people interested in achalasia and POEM could possibly want to know. I’ve not discussed all the symptoms, but you can look them up online if you think you might have this. My desire not to tell people up to now was not because it feels secret (I told the checkout people at the grocery store – it never felt secret to me), but because in the beginning I didn’t have the answers myself. Then I hadn’t the energy to explain the answers I did have. I was also aware that other people were dealing with acutely traumatic things and things that caused chronic pain, and I didn’t want to take up space on prayer lists for months while others who needed constant prayer as they went through months of treatments were also on the list. People who are close to me pray for me anyway as I pray for them.
The handful of people who did know were saintly in their response to me (it isn’t always easy dealing with a person who cannot eat in a normal way). The ones of my friends who didn’t happen to know (I tended to tell people because they were in touch anyway since it was impossible to be honest about what was going on and not mention this, but I have dear friends with whom I am not in constant contact, and many of them didn’t know, and some didn’t know because I didn’t want to put them in an unnatural position of not telling other people they might naturally tell, and I knew once it got out beyond a small circle, it would be on Facebook, which didn’t appeal to me – I told Aunt Sally she could tell anyone she wanted once I had a diagnosis at the end of May, but she decided my life would be easier if she waited) – the ones who didn’t know were still wonderful because my friends are so loving and kind that they cannot help being wonderful even without trying.
If you are going through something similar, I wish you well. Whatever may be troubling you, I wish you well. And I say to you the words of Julian of Norwich, first spoken to me years ago by my friend Sara: All will be well and all will be well and all manner of thing will be well.
There is so much kindness in the world – so much more quiet kindness than there is loud ugliness even if the ugliness seems big because it is noisy. Love has the last word. Love. See there, my choice, my last word. Love. Love. Love. Love. Love.