Headless in the Liminal Zone

This is how I feel this summer.

No, not like the model haha. The headless dolls.

I’m not the only person who thinks dolls are representations of humans. Why else do many people believe a child should have a doll that looks like her? Why do they give anatomically correct dolls to children who might have been sexually abused? This belief underpins some of the poems in Doll God.

I can’t seem to feel my head this summer. There are lots of body lumps curves and big limbs when I glance down. The heat makes me swell, and this makes my already swollen legs and feet take over my self-image until all I am is a big Goodyear blimp with two more blimps hanging down to the floor. I have a condition called Primary Lymphedema, and it causes swelling of the “extremities.” It can be really extreme. If you’ve ever seen someone with grotesquely swollen and misshapen legs, that is probably what she (sometimes he) has. (Just so you know, no, I don’t have the grotesque version–just the super annoying version). If you have ever heard of Elephantiasis, this is really the same illness–only that one is caused by the bite of a mosquito.I’ll throw in a photo from Wikipedia, so you can get the idea.

Elephantiasis

Elephantiasis

I have to wear compression stockings except when I am lying down, even when it’s 118 degrees out. Sometimes I feel like that Goldfinger girl who died when the gold paint covered her entire body. The stockings are almost claustrophobic. My SIL used to say my legs look like ragdoll legs.

A machine pumps my legs occasionally. There is a leg-sized sleeve that fits over my leg and it alternatively fills with air and deflates, pushing against the leg to move the excess fluid out of there and toward my bladder. It makes my legs feel better, but it isn’t that powerful at pushing the fluid around. A massage called manual lymph drainage can be useful, but only if it’s done by a superhero. These superheroes are very rare. I had one for years, but that was in California. I don’t have one in Arizona.

That was a tangent, although I think you needed to know that to understand why my body becomes so central in the summer (at least in my mind haha, which is a bit of a paradox). So my legs look a bit more like the chubby doll legs above than like the elephantiasis sufferer, but much lumpier.

I might have lost my male readers by now because I have discovered that men generally can’t bear to look at the swelling. They seem to find it upsetting. I hope it doesn’t sound like I’m generalizing too much. I’m just reporting on my experiences over the last few decades.

By now you might wonder why there are two dolls. I can’t answer that question because I found them this way at the hair salon. But since everything has a reason and a pattern, I have to assume that I am not the only one of me out there. Somebody else has the same problem.

On another note, I’m not just headless because the body has taken over my mind. It’s also because it’s hot and summer is such a LIMINAL period. Yes, it is. It always feels liminal to me–a passage between one year and another. Maybe it’s because I was very focused on school and summer vacation as a kid and then I was a teacher and the universe always seemed to operate on the school year.

All of the above is just to say that between the inflating body and the liminal season I #amnotwriting. Gosh, I have my memoir manuscript back from a reader and have some ideas on how to proceed. And I have the play we are supposed to be working on. I had another chapbook piece–this one flash nonfiction–taken by a lovely literary magazine called In Parentheses. It was all I could do to look it over for revision possibilities. At this point, most of the short prose pieces have been taken. So I really need to . . . WRITE SOMETHING.

Or not. I might not push myself until September. It will still be hot then, but the liminal period will be over.

In the meantime, we are going to sign the papers for Sloopy–and yes, that will be her new name!

###

Writing tip: when cooking Chinese food always use sesame oil. You can never have a bad meal if you follow that advice. On a full stomach, you will be happier and think you are a writer even if you are not writing.

 

36 Comments

Filed under Arizona, Doll God, Dolls, Flash Nonfiction, Food & Drink, Writing, Writing Talk, Writing Tips and Habits

36 responses to “Headless in the Liminal Zone

  1. I had no idea you suffered from this condition, Luanne. Perhaps you should move to a colder climate. Try not to stress too much about not writing…the desire will return, sometimes we just need a break. Feel better!

    • Jill, that is what I keep telling my husband. Then we discuss it and always end up not figuring out a place to move to. We don’t want to be far from both our kids is part of it. Thank you so much for your comforting words!

  2. I need to join the #amnotwriting club — except for the fact that I #amediting SANTA FE ON FOOT (hooray!). The leg issues are something I can relate to. Annoying muscle cramps awaken me every morning, no matter how much water I consume – or bananas or foods containing potassium etc. etc. It gets old. My pestilence of this summer, however, is a massive moth invasion (tiny closet moths that moved to my Persian carpets–now all cleaned and moth-proofed) and even half the house’s wall-to-wall carpeting. An invasion of biblical proportions and amazingly hard to get rid of. Won’t bore you with the extreme measures I’ve had to take. I’ve nixed suggestions such as (from one son) – “Maybe you should just get rid of those rugs” or my stepmother’s suggestions, ranging from “Maybe you should sell your house and move to a smaller place” or “Why not take out a loan to pay for all the restoration/cleaning?” Anyway, I hate that I’m battling moths rather than writing. And meanwhile, August is fast approaching. Ah well, summer can last pretty late here in Santa Fe.

    • Oh, Elaine. Those leg cramps are awful. I used to get those. What a shame that you haven’t found a cure for them.
      And as far as the moths. UGH. Invasions of bugs are just the worst. I don’t blame you for not wanting to get rid of the rugs or moving. It’s like giving up and letting the moths win! Why are life’s problems always taking over our writing time anyway?!
      Your book and charm will be flying toward you later today. It’s all packaged up and waiting to be taken to the post office! Thank you for your support of the animals!

  3. Luanne, you have my sympathy. I have two good friends with lymphedema — one male and one female — I am very familiar with the treatments. My girlfriend moved back to her home town but for a few years I would wrap her legs with compression bandages (I was good at that). She found a person who did wonderful massages that helped. My male friend has finally healed all his oozing sores (with some kind of light treatment) and has moved to compression. When I had my breast cancer surgery they took out a few lymph nodes so I am at risk for getting it in my arm. So far (13 years) so good but the doc says it can happen 20 years later. The heat doesn’t help. I enjoy your notes to us touching base. Think of this as your summer vacation from writing.

    • I’m gobsmacked to hear that you have not one, but two, friends with LE, Kate. That is so amazing because it’s not really that common, although I am starting to wonder if it’s a problem some people try to hide. It’s been good that Kathy Bates has come out and even publicized her upper body lymphedema. I heard that Hillary Clinton has lower body lymphedema. Apparently a biographer said that she got it after Chelsea’s birth. It could explain why Hillary only wears pantsuits because I know that it greatly affects how I dress and in fact shopping for shoes and a dress for my son’s wedding is a nightmare. If she has it, the best thing she could do for the other sufferers is to talk about it publicly. Back to your friends. I am so jazzed that you are good at bandage wrapping. You are amazing. How did you learn this? I’m so glad your girlfriend had you, a sort of superhero, and then her superhero who did the massages! I hope she has good treatment where she lives now. I really miss my superhero. She is the physical therapist who also came to my house and treated my foot after the tumor (which I think is related to the lymphedema, but there is no proof). Your poor friend with the sores. That is so scary. As you can imagine, volunteering in the cat roaming room is a bit of a risk. Because of the protein rich fluid just under the skin in lymphedema, a cat bite or scratch can be very dangerous because bacteria will multiply too rapidly. So I wear a pair of old velour pants for the extra thickness. And I don’t take unnecessary risks. Other than dear Betty. She is such a sweet tabby, 8 or maybe 9 years old now, who bites. Nobody will take her because of that. She loves to sit on laps. So I let her sit on my lap and she is so content but I never take my attention away from her in case she decides to bite me. Sometimes I get crazy and think I will take her, but there is no way. If she climbed into my bed and got my bare leg with her teeth . . . .
      Thank you for the “permission” to take a summer vacation from writing. That’s a good way of looking at it. Like it’s my choice!

      • It’s more common than you think especially people who have had cancer surgeries with lymph node removal. Back in the old days of huge mastectomies, they took out all the underarm lymph nodes and women routinely got it in their upper bodies. Fortunately now they only take very few out to test for cancer cells. My male friend has it as a side effect of diabetes. Learning to wrap isn’t hard. My friend taught me as her tech only came twice a week. She took more showers than that.

        • Your friend was so lucky to have you! I have never heard of LE as a side effect of diabetes. That is new to me. Mine is primary, so it’s congenital. I have a photo of my grandmother when she was about 34 where I can see her legs very clearly and they are definitely very thick at that point. That is who gave it me–thanks, Grandma heh. Another thing to be careful of if you are at risk because of lymph node removal is air travel. You know that, right? And also be careful with exercise–the type of exercise.

  4. I think the cause of elephantiasis (which you don’t have) is the filarial nematode. I was so impressed by this when I learned about it in elementary school, that the idea got stuck in my head. I’m so glad you don’t have that problem, but what you’re dealing with is bad enough, I’m sure. Does it get better in the cold weather? If so, you might consider moving to a cooler climate???

    • I would love to live in a more temperate climate, but I don’t want to live where there is ice because my foot reconstruction is very fragile and my walking not quite as secure as necessary for ice. So it’s probably more important that I stay away from ice than that I move somewhere less hot. That said, I have to improve things next summer because it’s just too hot haha..
      How interesting that you learned about elephantiasis in school–and remembered! Yes, it is caused by worms that people get through mosquito bites. Can you hear me shuddering?

  5. Sometime life throws a prison of situations at us and it seems the only thing to do is wait for them to go away — if, indeed, they can go away. The summer heat can and will go away. Yay!!
    Other situations might be dodged or dealt with. You’ve been doing a great job, over the years, of dealing with lymphedema and foot issues. You look nothing like that poor lady with the scarf covering her face.
    Writing and sending your words out into the world is another way of dealing with difficult situations — understanding them, making them into art — and I have faith that more writing is forthcoming. To take a break is good. Let your writing well refill.
    And congratulations on your flash nonfiction having been taken by Parentheses!

    • Thanks, WJ! You probably already know this, but if not, the whole time I was in grad school–at WMU and at Riverside, I pumped my legs for at least two hours at least 5x week. I have to hold those durn Riverside Anthologies up in the air to read!!! It’s surprising I don’t have major biceps. But it’s all the pumping I’ve done and wearing the compression stockings all the time for all these years that my legs are even as good as they are. I was lucky because I got decent medical care from the beginning. Lymphedema can look like the woman with the scarf over her face. It looks identical to Elephantiasis.
      Thank you for your writing advice. I know you are right. Sometimes I start to doubt it, but in my heart I know it’s true.

  6. Luanne sounds like a challenging condition I hope the weather changes and you get a reprieve. The writing never leaves you but I believe the heat and the real cold messes with my creativity too. Hope you have a better week.

  7. Congrats on the recent publication, Luanne. Totally understand about the not writing vibe. Summer has slowed my creativity too. xo

  8. Luanne, I had no idea you suffered (that seems to be the right word right now) from lymphedema. After my lumpectomy, my surgeon warned me that that I had a slight risk of developing it and that I should be careful not to scratch or bruise my right arm. (They only removed a lymph node to test, but didn’t have to remove any others.)

    There’s no reason why you can’t take time off–enjoy the liminality of it. 🙂

    • Is that long-term advice about the scratching or bruising? If so, I would add being careful of long air flights and heavy weight exercise. But you still need to do these things, so what does it mean to be careful of them? I really have no idea! :/
      Thanks for the “permission,” Merril! I will try to enjoy it . . . .

  9. I, too, measure the years with summer as the liminal section. Maybe because of school schedules, maybe because I hate the heat.
    I had no idea you had this trouble. I think people should talk about it more often. I had a teacher who had it after her cancer treatment. One arm was large and swollen compared to the other. She didn’t talk about it with me until I was no longer her student and had gone to call on her as an adult.

    • Yeah, heat is awful. I used to LOVE the end of the school year and the beginning of summer in Michigan because those days were so magical. Shorts and bare legs and air that was so perfect in temperature it felt so good on the skin. Then later on it would get hotter and more humid, but I never remembered that part when I was waiting for late spring :).
      That’s too bad that she didn’t talk about her lymphedema. I think people need to talk about it instead of living in shame. It’s very hard because of the body image problems, but to actually hide it or deny it or pretend it’s not there seems kind of vain to me. On the other hand, when we traveled to Italy in the summer years ago, my stockings were exposed on some days because of skirts and people stared VERY rudely at my legs. I absolutely loved Italy, but in that particular way I much preferred the typical American response which is to ignore. “Oh really? I never even noticed!” hahaha

  10. May it cool down for you soon, Luanne

    • Ah, thanks, Derrick. I might try to sneak out of here for awhile. That would be the most realistic option since there are still two months left of this stuff :(.

  11. It hurt to read your post, Luanne, although (of course) not as much as it must hurt to have LE. But the relatively minor edema I get sometimes is uncomfortable enough and even a bit frightening when I feel my skin seeming to stretch beyond its natural elasticity. (Backstory: my lower right skin is 2/3 skin graft and any kind of swelling such as that from an insect bite feels weird and unsettling.) I hope hope you can get some comfort. It seems like you’re having to deal with one thing after another (your eyes, your legs) and it’s frankly unfair. Yes, unfair!
    As far as writing, why not take a break until September or whenever you feel up to it? In spite of your physical pains, you’ve been very productive. Why push yourself? Rest on your laurels for awhile (especially cool green laurels). If you must work on anything, work on the play with your daughter. But I hope you just rest. Gentle hugs …

    • Oh, Marie, stretching with that skin graft must feel terrible. Is that 2/3 of your leg or calf of your leg? That is so much skin. I can just imagine how extremely sensitive the nerves in that skin must be! Ah, thanks, re the “permission” to rest! I think maybe you are right. It’s impossible to keep going right now, so why be upset about it?

      • Luanne, I hope you are resting. I do think you have the lion’s share of physical discomforts with your LE, etc. My skin graft covers about 2/3 of my leg from my ankle to my knee. The skin is quite thin and the sensitivity is … well, strange. If I bang my leg, the pain will radiate through my leg, not be centered where the insult occurred. Mosquito bites on my leg drive me crazy because the itchy feeling travels around. That said, after 30+ years, there’s still some numbness so it’s also easy to hurt myself and not be aware right away. But these are minor inconveniences. My injury had been severe enough that my doctors thought they would have to amputate. So … I try not to complain because it’s better to have the leg than not 😉 And, again, I hope you are resting and enjoying a lull. You work too hard.

  12. Oh, Luanne, I’m so sorry you’re suffering in the heat. I didn’t know you had lymph (sorry, have no idea how to spell the rest). Sounds painful and annoying but also sounds as if you’re handling it with as much positive attitude as you can muster, which I realize isn’t always easy (most people don’t know this about me but I have a rare condition called spasmodic dysphonia which causes my vocal cords to lock together. Some days I can barely struggle out a word and so yes, I know how difficult it is to try and remain positive when it feels as if your body is scheming against you)..
    Big congrats on your chapbook pieces getting picked up; that is a huge accomplishment. I haven’t been writing much this summer either. We’ve had a heatwave, which to you would probably be cool weather (mid to upper 70s and a few teases in the low 80s). Does that sound refreshing after 112 degree temps? Wish I could box up the cool nighttime air and send it to you. A little gift of a cool and moist wind. Cheers and big, big hugs.

    • Oh my gosh, I’ve never heard of spasmodic dysphonia! And I hope this doesn’t sound flip, but what a mouthful of a name for a problem with speech! It sounds like a scary disorder, too. Are there certain triggers or ways you can predict when it’s going to happen? How long does it last? Sorry for the interrogation–but I’m so curious to learn about it.
      A heatwave, you say? UGH. That would be SO nice!!!! I wish you could box up the daytime air for me! xo

  13. Luanne, I am saddened to hear of this condition. I hope it doesn’t hurt too much. . .
    I am wholly supportive of people who have loathing for their self-image. This is all within ourselves.
    My Mom hates her red, scaly eczema and poor Felicia dislikes the knobby knees and gnarled hands. When they told her she had the joints of a 65 year old at age 13, just picture how they look now. Her face, shoulders and back
    are her positive attributes.
    My low blood pressure means any bruises since age 45 or so are “forever” blue, black and throbbing on my legs. Darn the warehouse from 2008, doubling the ugly marks. But, interestingly enough, I don’t mind slathering on makeup over them, somehow it makes it all “better!” 😉
    You may have thicker legs but I just know you still are beautiful and special in your unique Luanne personhood. ❤
    Try to remember your good assets! Warm hugs of encouragement and sympathetic to your feelings too. xo

    • Oh thank you, Robin. You always make me feel good. I’m so sorry though about your low pressure and the wear and tear on your body from the job. And poor Felicia and your dear mother. And then we see models everywhere we look on TV and billboards. Yikes. Have a wonderful weekend, Robin. xoxo

      • We all need to feel beautiful and make each other happy, one way or another. Thanks for thinking i helped a little. I worried it sounded like these were big when my Mom likes her clean living place and has nutritious food, Felicia is still chasing dreams in her 3rd “career” since graduating from U of Dayton, and of course, I am counting days to get my downgrade in workload, possibly at a child care center, just in time (2 or 3 years) for Hendrix to be a participant! 😉 Hugs and happy weekend!

  14. Bless your cotton socks! I still think of you as a writer whether you’re writing this very second or not. Huge sympathy! Sounds like no fun at all.

  15. I am so sorry about this, and I would not worry about not writing one bit. I tend to put my difficulties front and center and always so admire those whom I learn, late in a relationship, are quietly dealing with things I have no earthly idea about. I hope the heat recedes and the cool brings you relief.

I'd love to hear your comments

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s