TotD: Written On the Body

I’d nev­er heard of Writ­ten on the Body by Jeanette Win­ter­son (or of the author, at all) until I was brows­ing through some of the quo­ta­tions at Gaia1 a while back. This bit is too long for my quo­ta­tions file, but I love it too much to just delete it.

Written On the Body“You’ll get over it…” It’s the clichés that cause the trou­ble. To lose some­one you love is to alter your life for ever. You don’t get over it because ‘it’ is the per­son you loved. The pain stops, there are new peo­ple, but the gap nev­er clos­es. How could it’s The par­tic­u­lar­ness of some­one who mat­tered enough to grieve over is not made ano­dyne by death. This hole in my heart is the shape of you and no-one else can fit it. Why would I want them to? I’ve thought a lot about death recent­ly, the final­i­ty of it, the argu­ment end­ing in mid-air. One of us had­n’t fin­ished, why did the oth­er one go? And why with­out warn­ing? Even death after long ill­ness is with­out warn­ing. The moment you had pre­pared for so care­ful­ly took you by storm. The troops broke through the win­dow and snatched the body and the body is gone. The day before the Wednes­day last, this time a year ago, you were here and now you’re not. Why not? Death reduces us to the baf­fled log­ic of a child. If yes­ter­day why not today? And where are you? Frag­ile crea­tures of a small blue plan­et, sur­round­ed by light years of silent space. Do the dead find peace beyond the rat­tle of the world? What peace is there for us whose best love can­not return them even for a day? I raise my head to the door and think I will see you in the frame. I know it is your voice in the cor­ri­dor but when I run out­side the cor­ri­dor is emp­ty. There is noth­ing I can do that will make any dif­fer­ence. The last word is yours. The flut­ter­ing in the stom­ach goes away and the dull wak­ing pain. Some­times I think of you and I feel gid­dy. Mem­o­ry makes me light­head­ed, drunk on cham­pagne. All the things we did. And if any­one had said this was the price I would have agreed to pay it. That sur­pris­es me; that with the hurt and the mess comes a shaft of recog­ni­tion. It was worth it. Love is worth it.

After read­ing about the book, I was sur­prised to find that it isn’t about the obvi­ous sort of loss. The nov­el is described as an erot­ic homage to a lover’s body, but one of the intrigu­ing aspect is that the author nev­er gives the nar­ra­tor a gen­der. I’m going to try to find it to give it a read.


1 Yes, I’m Tech­noMom there, like most places.

The Value of Education for Chronic Illness Patients

Paula Kamen, author of All In My Head, talks about the val­ue of edu­ca­tion in cop­ing with chron­ic ill­ness in an excel­lent edi­to­r­i­al in the New York Times.
Leav­ing the Rab­bit Hole. This pas­sage, in par­tic­u­lar, spoke to me:

The worst thing, to me, about hav­ing a non-stop mul­ti-year headache isn’t nec­es­sar­i­ly the pain. Or the way it tends to dis­rupt inti­mate rela­tion­ships, emp­ty all finan­cial reserves, and sab­o­tage the best-laid career plans. It’s not even the end­less bar­rage of (albeit well-mean­ing) sug­ges­tions for “cures” from every­one you meet, most of which you’ve already tried any­way (except for the colon cleans­ing and the Jews for Jesus con­ver­sion).

No, it’s the emo­tion­al suf­fer­ing – from all the guilt and the shame, of patients like me think­ing it’s our entire fault, and maybe all in our heads.

She also men­tions a good site for any­one who has prob­lems with migraines, Rob­bins Headache Clin­ic.

Responses to various comments about ME and FMS

Some of the com­ments are pret­ty old by now, but there are cer­tain themes that come back, over and over again. I’ve decid­ed to answer them once, and that’s it.

ME and FMS are not “lifestyle” dis­eases. Researchers have found genet­ic, neu­ro­log­i­cal and car­di­o­log­i­cal anom­alies, so get off that blame-the-vic­tim bull­shit. We know bet­ter. We’ve done the diet and exer­cise dance. We’ve tried air-clean­ers and remov­ing tox­ins and nat­ur­al cleansers and vit­a­mins and health foods, and while some of them are nicer than the alter­na­tives, they can­not cure chron­ic fatigue syn­drome or fibromyal­gia because they are not part of the cause.

While we’re at it, no, alien abduc­tions don’t cause FMS, either. I know you’re laugh­ing, but there real­ly is site out there that makes such claims. No, I won’t link to it. It’s bad enough that it exists!

“Chron­ic Fatigue Syn­drome” is a total­ly inad­e­quate name for a dis­or­der whose suf­fer­ers expe­ri­ence far, far, more than a lit­tle tired­ness. That’s why we have a new and bet­ter name for CFS, as of Jan­u­ary 2007: ME/CFS, or myal­gic encephalopathy/chronic fatigue syn­drome. The dis­ease has been known as ME all along in the rest of the world, although some­times the acronym was used for myal­gic encephalomyelitis. Per­son­al­ly, I pre­ferred one of the oth­er sug­ges­tions, chron­ic neu­roen­docrineim­mune dys­func­tion syn­drome (CNDS), but I was­n’t on the com­mit­tee.

I would hap­pi­ly rename fibromyal­gia “you don’t want to be me” or “betray­al by entire body, tak­ing your mind with it,” but I don’t think any­body is sug­gest­ing that it be renamed. The name just does­n’t seem ade­quate to its impact, though it’s a lit­tle bet­ter than some of the old­er names, like “rheuma­tism.”

To oth­ers who have said “pre­ven­tion is bet­ter than cure.” Well, yes, and “a stitch in time saves 9.” Yup. I’ve got plen­ty of apho­risms, too. Tell me, pray, how one “pre­vents” dis­or­ders whose ori­gin is unclear? As I said above, researchers have iden­ti­fied genet­ic anom­alies. We have fair­ly good evi­dence that fibromyal­gia, at least, has a genet­ic com­po­nent. We’ve got brain scans show­ing that fibromites’ brains react dif­fer­ent­ly to painful stim­uli, and oth­er tests show­ing that our spinal flu­id has much high­er lev­els of a neu­ropep­tide involved in trans­mit­ting pain impuls­es than non-fibromites.

With that in mind, how would you go about “pre­vent­ing” fibromyal­gia? Advis­ing us not to breed? Many of us have already done so by the time we’re diagnosed—and, of course, that can’t help us when we’ve already got the dis­ease. We can use our own diag­noses as warn­ings that our own chil­dren may have a sus­cep­ti­bil­i­ty to fibromyal­gia, but what then? Smoth­er them in cot­ton bat­ting, to keep them from expe­ri­ence any stres­sors in life that might set off the FMS bomb in their genes?

Being fat does­n’t cause ME or FMS, either, although it’s com­mon to gain weight after devel­op­ing either dis­or­der. I don’t know any­one who is able to main­tain the lev­el of activ­i­ty he or she did before falling ill, and many of the drugs used to treat the symp­toms of these dis­or­ders cause weight gain. Los­ing weight is even more dif­fi­cult for us than for oth­er peo­ple. Telling us that we’d feel bet­ter if we lost weight is not help­ful in the least. I’ve nev­er once heard of any­one who was “cured” of FMS or ME because he or she lost weight—and if it were hap­pen­ing, I would know it, because I pay a lot of atten­tion to these things.

Even if I thought weight loss offered a “cure,” or even ame­lio­ra­tion of symp­toms, I see no rea­son to dis­cuss drugs like Xeni­cal at any length. Any drug or pro­ce­dure promis­ing weight loss will has an easy time get­ting approved because of our soci­ety’s hatred of fat peo­ple. Fen-phen, any­one? “Oh, the drug will kill some patients, or leave them with per­ma­nent heart dam­age? Hell, it’s worth it if there’s a chance of los­ing weight!” The weight-lossself-hatred indus­try has more than enough mon­ey and pow­er to lube their way past any flim­sy lit­tle reg­u­la­tions stand­ing in their way.

Diet and sports and their rela­tion to weight are anoth­er thing all togeth­er, and beyond the scope of this blog. I rec­om­mend you to peruse the worlds of the delight­ful Sandy Szwarc over at Junk­food Sci­ence, who does cov­er that top­ic, fre­quent­ly, thor­ough­ly, and well.

Pain cures for women; Migraines from low-energy light bulbs

I’ve had these two sto­ries book­marked to post here for a bit, so it seems past time for me to actu­al­ly do it.

The best new pain cures, with a focus on women

Many women have a tough time find­ing the right kind of relief for their pain –and for good rea­son: Until recent­ly, experts had­n’t actu­al­ly stud­ied wom­en’s pain specif­i­cal­ly, and most research was­n’t con­duct­ed with a wom­an’s hor­mones and physique in mind. All that’s chang­ing, though.

Docs now know that to ban­ish our aches, they must devel­op treat­ments for­mu­lat­ed for wom­en’s bod­ies. What’s more, researchers are also look­ing for — and find­ing — ways to head pain off at the pass, so those of us with chron­ic trou­bles such as migraine, fibromyal­gia, or back­ache don’t have to be hob­bled by pain on a dai­ly basis. Here, how the new research will help you live an (almost) pain-free life. Health.com: Smart ways to ban­ish pain

It’s def­i­nite­ly good news that they’re doing the research, at least! There’s good infor­ma­tion here on how estro­gen and oth­er hor­mones affect the cen­tral ner­vous sys­tem. The arti­cle specif­i­cal­ly men­tions treat­ment for migraines and oth­er headaches, fibromyal­gia, and chron­ic fatigue syn­drome.

There’s a def­i­nite anti-painkiller bias in the arti­cle, unfor­tu­nate­ly. The author does­n’t seem to grasp the fact that ibupro­fen isn’t enough “pre­ven­tive med­i­cine” for some of us, but if you can look past that it’s a decent arti­cle.

Low-ener­gy bulbs ’cause migraine’

I’ve had con­cerns about this issue myself. Flu­o­res­cent bulbs have always been a prob­lem for me, and the “low-ener­gy” bulbs that are so pop­u­lar now are flu­o­res­cent. The flick­er­ing of flu­o­res­cent bulbs can also trig­ger seizures in epilep­tics. While man­u­fac­tur­ers claim that the new bulbs don’t flick­er, they still cause prob­lems for some peo­ple. Eye strain from the low-inten­si­ty light is cit­ed, but some of us do per­ceive flick­er­ing.

The U.K. plans to ban the sale of con­ven­tion­al (incan­des­cent) bulbs with­in the next four years. Patients’ asso­ci­a­tions are ask­ing that the old­er bulbs remain avail­able for those who have issues with the new­er ones.

This arti­cle did­n’t hap­pen to men­tion anoth­er prob­lem with the dis­pos­al of the bulbs: they con­tain mer­cury. You can’t just toss them in the trash, and if one breaks you have an envi­ron­men­tal haz­ard. That cost is sel­dom men­tioned when peo­ple talk about how much can be saved by switch­ing to those bulbs. When I looked for legal ways to dis­pose of the bulbs here in Atlanta1, all of the results involved pay­ing $1 or more per bulb. How many peo­ple are going to do that? Not many, which means that the bulbs will go into land­fills, releas­ing the mer­cury.

In look­ing for a cita­tion regard­ing the dis­pos­al prob­lems, I came across anoth­er arti­cle that states that the flu­o­res­cent bulbs also cause skin heal­ing prob­lems for those who are pho­to­sen­si­tive due to lupus, eczema, or oth­er con­di­tions.

I think we’ll keep buy­ing the full-spec­trum incan­des­cent bulbs for now.


1 I used Earth911, an excel­lent site for any­one in the U.S.