Here in the Eastern time zone, it is now 12:40 AM, on Wednesday, September 9. Twelve hours ago, when it was still Tuesday, my husband and I sat in the hearing room for the bankruptcy trustee for our district. There I affirmed the information filed on my bankruptcy petition, and I reiterated my intention to surrender my house.
This came about in part because of carelessness with money, but the root cause underlying that was increasing costs from my chronic medical condition, Ehlers-Danlos Syndrome. I’ve written about my health care story here before, about my struggles with health insurance, about my journey to and through my diagnosis. I’m not going to rehash this, just to repeat that not all costs of a chronic condition are paid to doctors and pharmacists; some go to pizza drivers, to manufacturers of splints or braces or assisting devices, to lawn care professionals, to house cleaners, to movers, to anyone who can do the things we aren’t always able to do for ourselves. All costs of a chronic condition aren’t even financial, or even sometimes quantifiable. They just are.
My husband and I spent our holiday weekend moving the last flotsam from the house to our new apartment, the things that we hadn’t managed to cram into boxes or suitcases in time for the movers to arrive. There were brooms and mops, large pictures that hadn’t fit into boxes, lamps, little knick-knacks, pens, pencils, my winter clothes, the iron — just miscellaneous stuff. We brought over two loads on Saturday, one on Sunday, and five on Monday. I’d come into the weekend already exhausted, already in pain. When my hands hurt, they hurt bad and they hurt all the time; the hands will keep me from sleeping and will wake me in the night. On moving day two weeks ago, I sprained both wrists and an ankle; while the wrists are better, the ankle still causes pain. My two sprained AC joints throb, and my subluxed hips and knees and ankles ache. I can tell that every vertebral joint from the top of my neck to just below my shoulder blades is out of place, and I think the topmost two pairs of ribs are subluxed as well. When I see my physical therapist next week, it will take him 30 to 45 minutes to put everything back where it belongs; he may miss some of them; and some will undoubtedly slip back out of place before I get home again. When things get this consistently bad for me, it usually takes about three weeks of twice- or thrice-weekly PT visits before I’m back to normal again… or what passes for it in my body.
Tonight, I cannot sleep for the pain, even after taking my normal meds plus a prescription-strength dose of ibuprofen. My pain management specialist and I have discussed this before. She has EDS herself, and now seems to focus on those of us with connective tissue disorders. She has a family about to fly over from Germany to consult with her on their daughter’s Ehlers-Danlos Syndrome, because no true specialist on this condition seeems to exist. She has learned, as have I, that when EDSers overdo it, we can try narcotics, and we can try OTC meds, and we can try ice and heat and meditation and relaxation… but nothing will really stop the pain until we get those joints back into place. Until we can get to our physical therapist or chiropractor or massage therapist or cranio-sacral specialist, we’re just going to hurt.
So in the dark quiet of the night, my mind started thinking. I’m really not in a feeling sorry for myself place, much less a wallow in self-pity. I really have come to peace with the bankruptcy, even with losing the house that was such a powerful symbol for me. I can still be frustrated and angry about it, because we have a stupid, lousy system for caring for our citizens here in the US. But I don’t feel the helplessness, the sense of failure, the sense of loss and grief that I felt before setting foot on this path. I know that a bright future lies before us, in our new home, in our new marriage, in our new start without the huge debts. The Master of the Anglican Dominicans suggested to me that I head out to First Landing State Park, to Fort Story where the people who settled in Jamestown first set foot on this continent. And she invited me to stand on those beaches, to look out over the waters, and to reflect on those who left everything behind (or who had already lost everything) to make the dangerous voyage from England. Even tonight, lying in the dark quiet, this was a powerful reflection.
This post wasn’t intended to be a bitchfest, more like the semi-lucid ramblings of a mind that belongs to a body that refuses to let it sleep. [QUICK UPDATE: I figured out, after turning off the computer and going back to bed, just why I was writing this post. It was to burn off excess mental energy, so I could get back to sleep. Thankfully, it worked!] So… some more randomness for you.
When my hands hurt really bad, it’s completely invisible to an onlooker, except for how I will cradle them or rub them. But when they hurt like this, they feel from the inside like they should appear all swollen, to the size of baseball mitts. They feel big and bulky and clumsy, and then I look at them, and the traitorous things look perfectly normal. Sometimes, when the pain is really bad in the metacarpals, I will wonder whether they will ever erupt into full-fledged stigmata, and then I think it would be nice to have some external sign of the invisible pain I experience.
Last week, when I saw my physical therapist, he worked on me for about a half hour, putting back into place the joints that had subluxed during packing and moving. After I told him how maplestar had commented on wishing he could be a fly on the wall, to hear the therapist lecture me, and while the therapist had his thumbs deep into a really crunchy trigger point, he said to me At this point, I don’t think any lecture I could give would make more of a difference to you than what you’re feeling right now. He was right, too, dammitall. Then he related a story about another EDS patient he’d just seen, who had spent hours working on her garden over the weekend only to come creeping into his office in terrible pain. She had been trying to prove to herself that she could still do this stuff. I hadn’t been doing that; I’d just been trying to do the work I had to do, because sometimes that’s just what’s necessary.
One of the things that stinks about having Ehlers-Danlos Syndrome is that EDS patients have to become — and remain — highly educated on our condition, on the many effects it can have on our bodies, and on the latest research. We can guarantee that at any point in time, we patients will probably be more knowledgeable about our condition than any of our doctors, dentists, or other caregivers. There are other real zebra conditions out there that are similar, the ones where med school professors tell soon-to-be doctors, Oh, you don’t need to study this one; it’s so rare that you’ll never see it. And then, out of the blue, one of us zebras shows up in your office, holding our brochures from the EDNF, with printouts from the web, with letters from our geneticist or our physical therapist. Or we’ll show up in your emergency room, and you won’t be able to find any real cause for our pain (“Your x-rays look okay, and you have normal range of motion” — normal, ha!), and you will dismiss us as drug seekers, telling us to take ibuprofen or acetaminophen. You’ll order X-rays and MRIs and CT scans, and you’ll study them and come away baffled; you’ll refer us to other specialists, and we’ll see more doctors in more specialties within a year than anyone ever should; and after all of this, we may or may not come out with the right diagnosis. You will look at our charts and think, nobody can possibly have this much wrong with them!, without stopping to consider that maybe there’s only one thing wrong, one pattern hiding behind all the symptoms. And it’s not your fault, because they told you in medical school not to bother with EDS, because it’s so rare that you’ll never see it.
Another fun part is Raynaud’s Syndrome, secondary to EDS, where my body has trouble maintaining its temperature properly. My body temperature regularly runs about 1 to 1.5 degrees F lower than normal; that normal is also the typical body temperature curve, which is lower during sleep and higher in the afternoons and evenings. I feel hot almost all the time, to where I want a fan blowing on me, or I start taking off shoes and layers of clothes, or where I try to hide an inward wince at the thought of hugging the people I love because of their sheer body heat. And yet, to all of these people, my body feels cold. My son remarked on this recently, told me he was worried about me because I always feel cold to him; my husband has said something about this, too, as I’ve kicked the bedsheets off of me and aimed the fan right at my exposed skin to get some relief.
I remember last December, the day my handicapped parking placard arrived in the mail. There it was, proof that in the government’s eyes, I am permanently disabled. To the bankruptcy hearing today, I wore arthritis gloves and walked with my cane. We had to walk two blocks from the parking garage to the federal building. It was a tough effort, and I was really glad we got there early enough to recover from it. I knew that this was coming — I’d asked for the parking placard! — and yet, the reality of holding it in my hand, seeing my name on it with those words permanent and disabled, this made me weep that day.
I’ve also learned that people with invisible disabilities are not always treated kindly when we use our handicapped placards. Sometimes I find myself affecting a slight limp, if people see me parking and walking into the store. If it’s 7am, I might be doing pretty well, and I might walk all right; the problem is, if I’m not gentle enough with my body, then it won’t last until 4pm or 7pm. Not all disabilities show on the outside, and we humans can be terrible at passing judgment. I was horrified recently to read the transcript of a live internet chat where participants talked with glee and pride about using their dead grandmother’s handicapped placard — or even a stolen one! — without a single thought or care for those of us they are harming in this way. It is because of that kind of dishonesty that the invisibly ill are treated with contempt, are sneered at when we try to take care of our bodies.
Don’t even get me started on the “If you’d just…” folks, either. If you’d just try this herb… if you’d just try this vitamin… if you’d just lose some weight… if you’d just gain some weight… if you’d just see this one specialist… if you’d just eat better… if you’d just try this special exercise regimen… if you just prayed harder… if you actually believed you could get better… Well, I’ll tell you. If you’d just shut up already, I could maybe tell you what I’ve already tried, or what I’m allergic to, or what my body is remotely capable of. I could maybe tell you about my struggle, my journey from doctor to doctor and from wrong diagnosis to wrong diagnosis. We could maybe have a discussion. If you’d just stop talking, stop insulting me with your assumptions, and listen for a while. Or, you know, maybe not.
Uh oh… I ended up ranting a bit there, didn’t I?
Well, there’s a sweet grey kitty at my feet, and I think she wants to snuggle up with me on the bed. I guess I’ll find a new mind-candy novel, because my brain isn’t up to Pére Teilhard de Chardin right now. I’ll stop bending your ear — if you’ve even made it this far — and seek rest, once again.
And tonight, as I do every night, I’ll wish you a blessing.
The Lord bless you and keep you.
The Lord make his face to shine upon you
and be gracious unto you.
The Lord lift up the light of his countenance upon you
and give you peace.