I have not written in this blog for more than two months. It is no coincidence that I stopped writing after I visited a highly recommended rheumatologist who spent 90 careful minutes with me, squeezing my joints, asking me questions that were similar to what my last rheumatologist had asked, and asking me what I wanted to ask. But he also did something that my other, very smart but very cautious rheumatologist had not dared to do in several years of treatment: give me an actual, solid diagnosis. He said to me, looking at my three-ring binder filled with five years of MRIs, cat scans, biopsies, doctor visits, etc., “You’ve had a LOT of testing. But not a lot of treating. I think, given your family history, given your symptoms, given everything, that you have an inflammatory autoimmune disease in the spondyloarthropathy family.”
He helped me spell it out for my journal and explained it for me. Because I have a certain blood factor called HLA B27, I am susceptible to a disease called ankylosing spondylitis (which basically turns your whole spine into one stiff unit) and several similar diseases—spondyloarthropathies. They include axial spondyloarthropathy (which has different manifestations, but can include having more arthritis all over your body), psoriatic arthritis (a combination of psoriasis and arthritis—nice!), Sjogren’s syndrome, which makes your eyes dry and other nasty things, and even Crohn’s disease—a severe intestinal problem which is called an enteric arthritis. I never knew that there could be an intestinal arthritis, but there you go. I know a lot of things now that I didn’t know, thank you Google, Twitter, and Pinterest.
Anyway, what I have is similar to rheumatoid arthritis, except that it lacks the exact blood factor that rheumatoid arthritis factor has. To have that, one would be sero-positive. This is sero-negative arthritis. But it’s not the same as osteoarthritis—which I also have in some parts of my body, such as my hips. That’s just bones wearing out and rubbing against each other. Or synovial fluid running out, or whatever. I can’t think about osteoarthritis right now.
To have a diagnosis after five years of searching for a reason for the pain and fatigue that have changed my life, and my husband’s life, so much, is a relief in many ways. For one thing, I have medicine to help treat the disease now, not just the pain and the sadness that it causes. To their credit, my doctors have believed that something real has been happening to me from the beginning, even if they couldn’t name it. But now I have two kinds of drugs that I get to inject each week, and they are starting to help. But on the other hand, I feel a shifting sense of identity as the fact of my diagnosis becomes real to me. It’s not a disease that will kill me. On the other hand, it’s not going to go away. I’m going to spend the rest of my life fighting against an enemy that wants to lock me in a stone cage made of my own body. I know its name now. And that’s good. But it’s not filling me with zest for life or an exciting new sense of purpose. Right now, it’s making me feel as if someone threw a brick at my head, and I’m just now sitting up and rubbing the bruise and going “whaaaa—?”
So dear friends and readers, please pardon my long absence. Perhaps now that I’ve told you what’s kept me away, I’ll be able to be silly, curious, and natural again. I hope so. I miss you.
Writing Prompt: Did you ever get any news that took a long time to digest?
135journals Book Club: In Search of Lost Time (Remembrance of Things Past) by Marcel Proust, Part 5: Grandmother’s Death18 May
Photo: Super famous Dr. Jean-Marie Charcot teaches a lesson on “hysteria” at his also super famous clinic at Salpetriere. (Wikimedia commons/Public Domain)
After attending a very elaborately described party, the narrator turns his attention to the growing weakness of his grandmother and his youthfuly blasé manner toward her as she got sicker and sicker. Indeed, this section of Guermantes Way is extremely harrowing and horribly comic as the same time. Physicians are called in, and one is more useless than the next, adding “milk diets” or, more repulsively, leeches, among other ineffectual cures. But at the same time as the narrator presents himself as insensitive toward his grandmother’s suffering, his later reflections show that he has thought deeply about it. This could be in part because of his own suffering. As he writes, pain is a fierce enemy:
“It is in moments of illness that we are compelled to recognize that we live not alone but chained to a creature of a different kingdom whole worlds apart, who has no knowledge of us and by whom it is impossible to make ourselves understood: our body. Say that we met a brigand by the way, we might yet convince him by an appeal to his personal interests, if not to our own plight. But to ask pity of our body is like discoursing before an octopus, for which our words can have no more meaning than the sound of the tides, and with which we should be appalled to find ourselves condemned to live.”
Meanwhile, the narrator watches his own impatience as he takes her out on a day he had friends to meet, with dreadful results. When he returns with her grandmother in a terrible state, When his mother sees her, she is appalled, protective, full of tenderness. Proust wrote, in words that actually brought tears to my eyes, and made me think of the preciousness of my own mother. “. . . my mother went up to my grandmother, kissed her hand as though it were that of her god, raised her up, carried her to the lift with infinite precautions in which there was, with the fear of hurting her by any clumsy movement, the humility of one who felt herself unworthy to touch the most precious thing, to her, in the world.”
Yet despite the family’s evident wealth, their ability to bring in the most expensive doctors, the grandmother is treated with little but condescension as she suffers dreadfully.
In one terrible but funny scene, an imperious Doctor De Boulbon, who is a former student of the famous neurologist Dr. Charcot (Dr. Charcot is real, often called “the founder of modern neurology” and is a remarkable figure—among his discoveries was Lou Gehrig’s Disease (ALS), Charcot-Marie-Tooth disease and research into other diseases such as MS and Parkinson’s disease, though he was also controversially involved in his experiments with “hysteria”) http://en.wikipedia.org/wiki/Jean-Martin_Charcot
who basically tells the suffering woman that all she needs to do is change her thoughts and stop malingering. Proust writes “Dr. Du Boulbon when he came decided against . .my grandmother . . . Instead of sounding her chest, fixing on her steadily his wonderful eyes, in which there was perhaps the illusion that he was making a profound scrutiny of his patient, , . . . tells her, “’ You will be quite well, Madame, on the day. . . which you realise there is nothing wrong with you, and resume your ordinary life. You tell me that you have not been taking your food, not going out?”
“But sir, I have a temperature,”
He laid a a finger on her wrist.
“Not just now, at any rate. Besides, what an excuse! Don’t you know that we keep out in the open air and overfeed turbuculosis patients with temperatures of 102.” .
. . . it was with the superior smile of a Parisian who, in conversation with a peasant, might hope to surprise him by using suddenly a word of the local dialect that Dr. du Boulbon said to my grandmother: “Probably a windy night will make you sleep when the soporisfics wold have no effect.”
“On the contrary, Sir, when the wind blows I can never sleep at all.” But doctors are touchy people. “Ach!” Muttered du Boulbon, knitting his brows, as if someone had trodden on his toe. . .
In the land of well-meant-(perhaps) but ineffective care, many positive thinkers are inclined to dismiss the very real and damaging sufferings of those in pain. There is almost a comedy of errors. The Duc de Guermantes walks over to shake the father’s hand in condolence while the grandmother is in her death throes—and doesn’t want to be kept waiting. Her two sisters don’t want to leave Combray to come to Paris because they found a musician they love to listen to, and his music is much more pleasant than sitting by the bedside of an old dying lady. On the other hand, their friend Bergotte, the famous writer (whom the author, unfortunately, no longer venerates as he once did) visits frequently.
One of the things that is so excellent in the narrator’s recounting of this sequence of events is that again, he is able to be very clear about what is going on without connecting the dots for the reader. A few comments make it clear where the narrator’s sympathies lie. Naturally, old ladies are known to die, but how difficult it is when a family is confused, when nobody knows the right thing to do, when a good and gentle lady cannot advocate for herself, and, even though she belongs to one of the richest families in Paris, gets not one to take her seriously. This sort of thing goes on today. One WANTS to believe doctors. But when one is both in agonies of pain and is bein accused of being neurotic and of needing to have a sunnier attitude and to get —when one is being “Brightsided,” as Barbara Ehrenreich called the phenomenon, in the book of the same—it can add to the pain a hundredfold. This unforgettable section of Proust’s masterwork is a reminder that the pain of those who are old, even if inevitable, matters as a deep human tragedy.
Writing Prompt: Have you ever suffered and felt as if you have not been heard?