Day 186. VEDS Pinup Girl

Call me the Bronze Goddess.

Me, yesterday AND today.
image credit:

Aaah, that feels so good. I haven’t been called Bronze Goddess for at least ten years.

I had to stop going in the sun. The sun gives us skin cancer, doesn’t it?  Besides, I have so many allergies.  The pollen makes it hard for me to stay outside without feeling ill.  Then there’s the heat. I feel overheated anymore after only a few minutes, and when I am overheated, I get one of my headaches.  The outcome of this equation is that I have had a ghastly pallor for a long time, unless I used one of those fake bronzers, which, after lengthy use, ultimately I decided can’t be any better for us than the sun.  Bitch, bitch, bitch, bitch bitch.  Ach!!!

My naturally brown friends are having a laugh right now.  They are the lucky ones, laughing at us, the white people who perpetually attempt to copy their perfect hues.  The truth is the truth. I own it. As the Potawatomi creation myth goes, I am one of the clay people who didn’t get baked enough and came out lily-livered, instead of the ones who were baked just right, nice and brown.

Well, let me tell you about one of my alternative medicine experiences this week (watch for my upcoming entry on Medical Qi Gong!). On Friday I saw a private consultant for medical conditions. I have the sense that her practice is somewhat exclusive, so I won’t give her name. Let’s call her….Kate Middleton. Middleton has a compelling story. During her career as a scientist, she fell ill with a serious disease from which her symptoms became extremely grave. The doctors gave her medicine for them, but the side effects were so unpleasant that she refused the medicine and decided to treat herself. So that she could do this, she read the very most current research about her illness, the kind that sometimes gets overlooked by doctors. She is particularly interested in studies involving using vitamins, supplements, and foods to treat illness. Because she’s a scientist who is well-qualified to read studies such as systematic reviews, meta-analyses and randomized controlled trials and see that they are valid and relevant, and not based on wishful thinking. (In addition, she has a connection with a medical office, which supports her with a medical license, reviews of her decisions to make sure they are medically sound, and the prescriptions.)

Indeed, after finding some very promising studies about her disease, Middleton started treating herself and turned around all of her most debilitating symptoms.  As a result some of her friends asked for help in their difficult diseases. From there, her business started, by word-of-mouth.

She was interested in my genetic disease (VEDS) especially because it is unusual, and because I don’t have just one but five unusual diseases (MCAD, Addison’s, Occult Tethered Cord, Chiari Malformation). I spoke to her on the phone at length before I came and e-mailed her medical records. So when I arrived to my appointment she had done a great deal of scientific research about my specific needs.  What a great use of everybody’s time!

The questions Ms. Middleton asked were unusual, certainly not the typical medical examination questions.  “How do you feel in the sun?” and “How do you feel after a big meal?”  It was hard to tell what she was trying to determine.  I realized how much in control of a typical medical examination I am at this point. I am so experienced at going to the doctor; I almost know how to do it better than the doctors themselves. My mom, who is witness to almost every one of these appointments, pointed that out to Ms. Middleton: “Heidi has to instruct the doctors because they don’t know what to do with her.” True enough, but this case was entirely different.

This is where the sun comes in. My dear Ms. Middleton said [verbatim], “You know all that stuff about skin cancer and stuff? Blah, blah, blah, blah, blah. Forget it! I want you to be in the sun at least 2 hours every single day. I’m not kidding. Fully in the sun.  Outdoors.”  My mind started racing. “COOOL!!” and “Oh my God, this is nuts.  I get sick in the sun” and “Is she crazy?” and “When can I start??” and so on.  Ms. Middleton explained the science behind it.

I’m just learning this extremely complex information. As I understand it, taking high doses of Vitamin D, along with high-ish doses of Calcium and Magnesium, as well as Niacin does a wealth of things to do a Bronze Goddess good.  The first thing is that taking the supplement of the Vitamin D in combination with going in the sun allows the body to use Vitamin D properly. For someone not taking the supplement, the body doesn’t store the value of the sun’s Vitamin D (as I understand it).

Taking Calcium is critical because Calcium reacts with the Vitamin D and it is stored properly, for example in the bones.  Magnesium and Calcium also bind with each other and absorb more easily when taken at the same time.

Niacin’s role I’m not quite as sure about, although I do know it was crucial that I took some before I sat in the sun.  Traditionally, Niacin is a first-defense treatment for high cholesterol. Surprisingly, doctors are using this B Vitamin before they reach for pharmaceuticals because it is so effective.  It won’t hurt me, then, to lower my own cholesterol a couple of points, since I had a borderline high score on my last trip to the lab (and what a rotten deal that was—I’m vegan, and I eat a relatively healthy diet of fruits, veggies, and grains; I’m the polar opposite of the standard American diet and I still have high cholesterol?  God has blessed me with yet another anomaly).

About the formula:  You’re probably wondering when I will mention doses.  I’ll tell you mine, but please don’t take what I am taking because you aren’t as sick as me.  Even if you are sick, it is extremely unlikely that we are similarly sick.  Here goes: I take 50,000 units of Vitamin D, once a week. Then, every day I take 1500 mg of Calcium, divided in 3 doses. I take 1000 mg of Magnesium, divided in 2 doses. Right now I’m taking 50 mg of Niacin, but I will be building up to 100 mg, divided in 2 doses.

I have very little information about which kinds of vitamins or brands are the best to choose, other than the type of Niacin to buy is very important. Do not buy the type that says anti-flushing. According to Ms. Middleton, you might as well throw in the trash. Niacin makes nearly everyone flush, or break out into slight rash. It’s important to know the situation is normal and temporary—and critical for me to know because I have such ridiculous allergic reactions to everything. I might have panicked.

They plump when you cook 'em.

Ms. Middleton told me that she actually likes the Niacin rush because of the well-being that follows. I was skeptical I would ever feel it. However last night when I “came on” to my Niacin, the tops of my feet started to itch and then I felt the onset of a mast cell reaction,when the mast (allergy) cells started to act up. A great description of the sensation is that the skin all over my body felt just like a hot dog in this one advertisement.  Do you remember “Ballpark Franks: They plump when you cook ‘em!” Then, in the ad, the hotdogs would puff up about 50%.  Well, that sort of blowup is how my skin feels  all over me; it plumps up like a little mini blowfish. So I started to get that feeling up my legs, and I thought, “Oh, God, now it’s going all over me.” But then it stopped. I was shocked when I got a complete surge of good feeling, like I was on drugs. I said to myself, “I like this. This is good. I think I would like to take another Niacin.”  I didn’t, of course. These days, I’m not inclined to take drugs, like extra narcotics. Their charm is lost on me at this point in my illness because I have to take them. I’d prefer to be far away from them rather than having to take them every day. So the sense of enjoying a chemical substance was a surprise to me. So I was already to take the second dose today. Yahoo!!

I didn’t get the rush the same way today, but that didn’t matter because it was time for me to hit the sun.  The alternative for the pollen problem involved in lying in the sun for me is tanning beds.  Can you imagine?  I don’t care to admit how many times I have sneered at people leaving the tanning salon like they were fools. Who would lie in a tanning bed with all the research about the sun and skin cancer?  And the thick skin.

Thick skin!  Precisely.  Lying in the sun thickens the skin.  Do you know how badly I need to thicken my skin, particularly that on my shins?  I practically ran to Palm Beach Tan and bought a month-long contract.  I spent five minutes in a tanning bed, first time in my life, and not a lick of sunscreen (gobs of moisturizer, though).  Just in case you are wondering….I will not be having tan lines.

The only problem I had was that five minutes into the time, I looked up and it registered that the tanning bed looked like a bizarre sci-fi coffin.  The panic attack started buzzing up from the center of my gut, like some kind of an awful wasp, and as it did, I had to smack it down with my internal anxiety fly-swatter so that I didn’t run screaming from the room, naked as a jay-bird.  Next time, I am promised a bed that I can see out of.

I have a tiny bit of a tan already, surprisingly.  It is barely visible, but it’s there.  In just five minutes, I lost that ghastly pallor on my face that made me look like I am very sick. Oh, and tan fat is substantially minimized. Beauty should exude from me; hell, I will be practically radioactive from my daily sessions in the coffin! Now, to get dressed up, instead of wearing foundation, I will just need a caress of bronzing powder.  Life is good.

At the end of the appointment with “Ms. Kate Middleton,” I could barely wait to leave to get to the tan studio.  We were joking around, I kept saying how great I was going to look next time I saw her.  This is such a big deal: it is the first time I have felt optimistic about my health after an appointment like this for a long time.  This is a big deal. Ms. Middleton was laughing and she said, “Yes, you really are going to look great.  You can get pictures done and be the first VEDS Pinup Girl.”  Then we all really laughed.

You’ll be the first to see the pictures when they’re taken! (They should look like that one above.)

Day 188. Any Day is a Good Day for Poetry

Saying Goodbye To My Brother on Paros

We hovered above a Greek port café,
feet dangling down the hill
of the island city of our vacation.
Mine ended when I caught the ship to Athens;
his would continue on the next boat to Turkey.
Our eyes strayed west at every sound
announcing the passage
of another ship,
every 15 minutes.

And this day, measuring the decline
of sun against sea water,
timing sips on drinks, drags on cigarettes,
we made believe this was the end
of any holiday, not the last
vacation of our youth, before they
called him Dr., or me Professor.

Our eyes opened wide,
glimpsing the last pinpoint of light
when the sinking sun
bursts between two ships,
crossing and moving
away from each other.

HRM   1991



Put some poetry in an unexpected place

Put some poetry in an unexpected place

“In my view, books should be brought to the doorstep like electricity, or like milk in England: they should be considered utilities, and their cost should be appropriately minimal. Barring that, poetry could be sold in drugstores (not least because it might reduce the bill from your shrink). At the very least, an anthology of American poetry should be found in the drawer of every room in every motel in the land, next to the Bible, which will surely not object to this proximity, since it does not object to the proximity of the phone book.” — Joseph Brodsky, “An Immodest Proposal”

As a result of these remarks and in conjunction with Brodsky, Andrew Carroll founded The American Poetry and Literacy Project to distribute free books of poetry in unlikely locations. APLP has placed poetry in schools, hotels, subway and train stations, hospitals, jury waiting rooms, supermarkets, truck stops, day-care centers, airports, zoos, and phone books nationwide.

Today, take Brodsky’s words to heart. Leave a copy of a poem in an unexpected place. Donate some poetry books to your local coffee shop or leave them in your doctor’s waiting room. (All those magazines are probably out-of-date anyway, and poetry doesn’t expire.) Post a poem beside the want ads on your supermarket message board. You could even release one of your poetry books into the wild through BookCrossing and watch it travel around the world. Maybe someday you’ll be pleasantly surprised when you find a poem that someone else has left in an unexpected place.

From the Academy of American Poets Website.




Day 193. A Zero Day, Skipping Stones

This will be a short one, skipping topics like skipping stones across the surface of a pond.  It’s about yesterday and what it did to my body, about what I did for an art project, and what I need to do for homework.

Yesterday I had a to-do list of seven items.  I accomplished an amazing one-seventh of them when the Comcast man came and went.  As for the rest, well, I scratched through them in red pen: incomplete.

Here is why:  when I awoke, I wasn’t sure about how I felt.  In an iffy situation like that, I try to put makeup on and dress as though I am about to go somewhere, so that I will create a sense of momentum (and sometimes propel myself out of a funk).  I didn’t realize until after the Comcast guy had left that I had applied the eyebrow pencil a trifle dark.

Old Lady Eyebrows

People, this makeup mistake is a definitive crazy old lady marker.  There is no pussyfooting around it.  I looked in the mirror and laughed at myself.

Trouble was, I just felt all wrong.  My body was on fire.  To give a simple example, I wear soft, fleecy socks all the time around the house because they are warm and protect my feet, from which the fat pads the rest of you have, have disappeared (making walking on them feel…well, like walking on sharp bones).  Yesterday, though, the little nubbies on my regular soft socks felt like they were razors across my toes.  I kept telling myself to ignore it.  You know, like, “Hey, stupid.  You have too much time on your hands.  If you were driving railroad spikes someplace, your stupid foot pain would not come to mind.”  Trouble was, this stupid food pain was starting to feel like railroad spikes driven into my toes.  Finally, I had to dig through the various pairs I have to find the very newest and softest pair of soft socks on which the little nubs are still perfectly squishy.  That was only one part of my body that felt like it was being poked, prodded or twisted.  There were the ankles, the wrists, the knees, the hips….WTF?  I thought this was all going to resolve itself once the PT was over!

Since I was no good for the concentration involved in doing the kind of writing I am doing now, I found some Zentangles to work on.  I posted one last time; I worked on the one here most of the day yesterday, until my hands hurt so much I had to stop, and then I slept for a while.  Then I started again.  They are fun to do when I need to stay in bed because no paints are required, just a pencil, eraser, pen, and a ruler.

I tried meditating before working on my art, just as I am making sure to meditate before I write each time, so that I stay on task and feel the work flow out of me.  I’ve been trying to work on doing that, as something I have been discussing with my therapist.

My therapist, Dr. A., who specializes in working with people to deal with chronic pain and grave illness (rather than “how do you feel about your parents” kind of stuff) does cool things like help with meditation and things like that.

This week, though, he has me stumped.  He gave me an assignment to think about what I need to work on, in therapy. To him, that means what I need to improve, discuss, or problem solve as it relates to dealing with my illness or the situations around it.

I am drawing a complete blank.

It isn’t that I feel cured or resolved by any means.  I just feel a great blank when I try to think of the answer, because I often draw a great  blank when I try to think deeply. Now, I need to come up with something by Monday. Help a sistah out. What do you guys think?  I  thought it would be cool for my brilliant readers to opine (since I am so blind to my own situation).  This means you!

Have you been given similar therapeutic assignments? How has it worked for you? What am I missing?

Day 196. Fatigue, PT, and the Pain Doc

This is a Zen Tangle - a sort of glorified brain-emptying brain took several hours this weekend to empty.

I have to come clean about one of the troubles that caused my lengthy mental vacation a few days ago. Because I was under so much duress, pain, and fatigue from physical therapy, I ended up quitting, which felt like a combined defeat and deliverance.

I restarted Physical Therapy on the last week of January this year.  It was a familiar place, since I had been in PT for about six weeks at the same place with the same therapist around the same time last year.  I ended up quitting that time because I got infections in my legs and felt so sick and was hospitalized…it was too hard for me to keep going, ultimately.

But this time, a different doctor had ordered the PT.  Specifically she wanted to work on pain before any exercise took place.  I have knots in the trigger points of just about any muscle group you can think of, especially around my neck and shoulders, my core area, my lower back, and my legs.  That probably explains why I hurt a lot, and (at least to some extent) why I get so tired when I move around.

So Mike’s job was to defuse these little bombs all over me. Since my skin is so tender everywhere, massaging away the trigger points was misery for him; none of the standard methods worked because if he used them, I left the place in more pain than I came in with. So Mike put me on moist heat and a TENS unit (electrical shocks to the muscles) before he started to relax me, and then took the most gentle, feathery approach possible— and distracted me as much as he could.  Most of this was good.  I loved the heat and the TENS unit.  It was yummy.  And what Mike did felt good, sometimes.  And the distraction was great.  He became a pal.  I really like Mike.  He’s the kind of guy I would hang out with.

THAT IS ALL WE DID.  When I complain about PT, people envision my having to do 45 minutes on the rowing machine and another 20 on the treadmill or some ridiculous thing.  HAH!

 No, I was completely exhausted from a fantastic massage.  Mike did this neck thing that was quite possibly one of the most delicious feelings ever.  And I’m including sex in the list of possible feelings.  Seriously, though, just the act of turning over a couple of times on the table, pressing down on my wrists, lying face down (which is very taxing for me, because of my POTS), and the moving around of my tissues and my joints (particularly when he moved my hips and spine around from positional faults), required my immediate, lengthy rest when I got home.

 So, it got to the point that I was having early lunch on Tuesday, leaving for PT, then getting home at 2:30 and having to rest until 4:30 or so. Then I would be starving.  I would eat dinner, but I would be exhausted afterwards, so I would get in bed, and take my pain meds for the night.  I always have writing group on Tuesdays, which was a challenge, but we do it on Skype, so speaking under the covers about writing and doing the occasional writing exercise was okay.  But 10:30 would be it for me.  About half the time, and especially if Writing Group went late, I felt miserable on Wednesday, mainly the result of PT, so it would be a pajama day.  Then it was Thursday, time for PT again, the same rigmarole, and Friday had a 50-50 chance of being lost.  That sucked (particularly since I always have a doctor appointment on Monday and frequently have appointments on Fridays as well).  My ENTIRE week was gone.  It was very hard to make plans at all during the week.

I complained about this problem several times in therapy, and my therapist (who sees only people with chronic pain issues and knows about this stuff), said, “Look, why don’t you call your pain specialist and ask him if there is a medication he can give to help with this. Sometimes the fact that you are so exhausted from the treatment means that you are having pain from it that you’re just not sensing.  It’s a good idea to get his opinion.”  It was good advice, but my intuition was it was going to turn out terribly.  Still I made the call.

Dr. Duckweed, the pain specialist, called me right back.  His response?  “I thought I told you to make an appointment for another epidural injection.”  Me: “Um…I don’t remember that, but I can do that….” Dr. DW: “Oh, COME ON, you know what you were supposed to do! Me: (long silence) I guess I didn’t or I would have made the appointment.  But I’m really, really sorry about that.  Sorry, Dr. Duckweed.  But I am calling because Dr. A suggested I talk with you about my problem.  I have a lot of pain in physical therapy and it exhausts me for two days afterwards.  I was thinking that maybe there is something I can take just during physical therapy.…. Dr. DW:  No, you were supposed to sign up for a shot.  Me:  But, Dr. Duckweed, I get so exhausted.  Dr. DW:  If you’re so tired, go see your primary care doctor.  [bang–hangs up.]

That was helpful.

I was so upset.  What upset me most was that when I get angry, I don’t yell, like Dr. Duckweed.  I cry.  So to keep myself from crying, I got quiet.  That made me so mad.

But then I figured, maybe the guy was right, although he probably didn’t even realize it.  I should call my primary care doctor, who is smart and may figure this out. By some miracle, she had an open appointment the next day, which, if you make doctor appointments at all, you know is miraculous. Besides, I thought, maybe I’m depressed. Maybe I am so panicky and can’t handle two simple appointments per week (and a simple run-in with an otherwise very good doctor) because I’m depressed.  Yes, that’s it.

Dr. Miller, my PCP, was helpful.  She said she would give me the requisite blood test that anyone would expect her to, but we both knew it would be one of the few tests on me that does come out normal. Then, she offered to call Dr. Duckweed to try to reason with him.  She suggested that maybe it was a miscommunication, that he was not understanding the part about the exhaustion.  She wasn’t so sure about depression.  It could be anxiety, but she even wanted to table that until the immediate problem was solved.  So we set an appointment for a month in advance to re-evaluate.

Not long after I got home, she left a message—I had been on another phone call I couldn’t hang up from, damn the luck.  She told me she had talked with the cranky doc, and that he said, oh of course he didn’t understand the exhaustion part.  That’s just muscle pain.  Just treat that with Advil and rest.  Dr. Miller added her part–that if PT was giving me this much muscle pain, why didn’t I quit for the next 4-6 weeks just to see how that improved my mood and pain level.  Then, when we meet next time, we could talk about it.

Well Shit.  Um.  Okay.  I can’t take Advil (or any of its NSAID cousins)— bleeding risk and all.  And um, I know I have told Dr. Duckweed countless times that I live on a heating pad.  Resting is my life.  Jesus.  Did he never take notes on any of our visits?  But at least Dr. Miller saw through to a solution.

Thankfully, my therapist, the wonderful Dr. A., was willing to email with me about this.  We agreed on laying off the PT; if pain and exhaustion had become so central a focus, why continue?  He suggested his acupuncturist, who I called right away.

Not fifteen minutes after I canceled my PT appointments, though, Mike called me back to find out what was wrong.  He also wanted to point out that if I did go to an acupuncturist to be very careful; since I have Addison’s Disease, I am highly prone to infection.  And my VEDS makes me highly prone to bruising.  Was I sure acupuncture was good for me?  I told him I would sort it out, but thanked him because he was quite right in his reasoning.  Still, he wondered, what could I have done better, so I can improve my service.

Horrors.  The worst part of it was that I couldn’t articulate what was wrong with me, what the pain was.  I couldn’t explain why getting the best massage of my life was making me so miserable.  In retrospect, it was like breaking up with someone you really love, for some higher, greater reason.  Then, when they say, but we were so great together, and I really, really loved you, what about that wasn’t good, there’s nothing to say to dispute that.

But a physical therapist is not a masseuse.  The work this guy was doing was pretty intense.  The fact that I mistake him for a masseuse is a testament to his expertise with taking me through some difficult passages.  I don’t think anyone else could do it.  So what about my body won’t put up with it? And still more, why can’t I articulate it?

I think the conflict with the doctor arose from the same problem.  He was angry because I couldn’t give him the right information.  If I had been able to explain the kind of pain I had specifically — in frequency, intensity, and duration — he would have known immediately what to do.

My words leave me when it comes to my body.  I wonder whether it is a factor of having very poor proprioception, misguided orientation towards my body in space.  Thus, I don’t know what hurts or where, just that it hurts, all of it.  Or I wonder whether it is I try so hard to tune out the message that anything at all hurts (I do this with such great conviction, I can’t express it to you earnestly enough); it is as though I say to myself those words in the Pink Floyd song,

There is no pain, you are receding; a distant ship, smoke on the horizon.  You are only coming through in waves.  Your lips move but I can’t hear what you’re saying. When I was a child, I had a fever. My hands felt just like two balloons. Now I’ve got that feeling once again. I can’t explain, you would not understand. This is not how I am. I have become comfortably numb.

Any of my readers who have chronic pain may be able to relate to this inarticulate feeling.  Maybe the rest of you a bit?  It’s damned ironic that such a consuming feeling also consumes the words I have so freely for every other thing, and it ends up I can’t describe it accurately to the people who would treat it.

 What makes you inarticulate?

(P.S.  The Pain Doc is fired as of today, and I see the acupuncturist for Medical Qi Gong next week, no needles.)

Day 198. A Mental Vacation

Hotel Palace Ios. Sigh.

This has been a week of upheaval and strife.  I’m tired.  I see I’m down to less than 200 days left to live.  Supposedly.  Should I have marked that somehow?

So why does my mind drift instead toward the Island of Paros, in the Cyclades, Greece?

Two, maybe three days of my life I spent on that tiny island, twenty years ago, soaking up the sun, drinking fruity drinks, eating phenomenally salty feta cheese and sucking my fingers, after juicy kalamata olives.

We spent one idyllic day, on Golden Beach, John and my brother Greg and I.  The place was aptly named, golden, and deserted, except for a few German sunbathers and some French windsurfers, who (we thought, hilariously) windsurfed in the nude. The day was perfect for no special reason:  but the weather was exquisite, not too hot or cold, with the sun shining on us without a break from clouds, but somehow not so blindingly that we felt a need to get into the shade.  We could have stayed all day and into the dark.  Did we?  I don’t remember.

I only remember how funny those naked French windsurfers were, how immature John and I were about what all was flopping in the wind. Then John and I swimming in the winedark sea, taking off our trunks and doing backward hand stands toward the beach, both of us laughing so hard. I laughed so hard that I aspirated sea water. But we were terribly disappointed that Greg did not see our Aegean Sea mooning show. Still, my abs hurt the next day from how hard we laughed.  Oh, we knew we were immature Americans! I have never grown up since.

So, I am remembering this day so fondly, the way the wind cooled my sunburned skin, the way my red skin grew white polka-dots when it got chill goosebumps.  I relished the coolness of the icy bottle of water I know Greg would have bought me (because that’s the kind of guy he is).  I remember it, return to it now, because at the time, it never occurred to me that it was the last trip of its kind, for me.

I mean, I never appreciated it for what it was, for the sensations I was having, the wonderful place, for the people I was with. I was having a fantastic time. But at the same time, a tornado of some kind always rushed my cerebral cortex: I was feeling left out because I had no love interest, or no boys looked at me, or whatever.  The first couple of days we were there on the previous island, a spider bit me….in the face…so I was sure that everyone would stare at my swollen face. I always found something to bitch about, if not to someone else, then to myself.  For that reason, I didn’t fully enjoy the trip. What a tragedy.  What a fool I was.

Thus, now that I am sick and it’s hard for me to travel—I had to quit (or at least delay) Physical Therapy this week for complex reasons,  I’ve been feeling like I can’t get anything done, and then yesterday I tore the skin on my leg AGAIN, thus another trip to the ER, where (at least) they glued it shut (I won’t describe how painful that is!)—All these things are reminders that keeping it together at home is challenging enough that traveling is not going to be an option for me.

I’m still remembering that trip to Greece twenty years ago.  Another place we stayed was the Hotel Palace Ios (which is in the picture on the left, overhanging the sea), an absolutely gorgeous white-washed hotel, cut out of the mountain-ish hill, overhanging a cove of the sea (where divers would go every morning to harvest the squid for calamari).  The way up to the rooms involved going up beautiful grey slate steps.  Following the grey slate down, we wound up at the pool, made of Grecian blue and white tile.  It was on a fantastic slate patio with a bar that played fantastic music all day, run by a fun, gorgeous bartender, Photis.  All day long, a few old Greek men sat at the bar drinking Ouzo.  Who needed the beach below, when we could swim in that elegant pool?

When someone asks me to form an image of relaxation, I imagine myself catching the sun and chill on Golden Beach, or in bed one morning at the Hotel Palace Ios with the cool breeze blowing in the window, and Pink Floyd’s “Time” playing loudly at the pool in the Cyclades Islands in Greece, which may have been my life’s peak experience. I may not have enjoyed it fully then, but I will enjoy it more than enough now, over and over. I guess I can travel….in my mind.

What about you?  Any peak experiences of your youth that you relive?

And for that matter, what image do you form in your mind when the voice on the relaxation tape tells you to picture a relaxing place?

Day 203. The Secret Powers of Time


So it was Easter yesterday, a really nice one. I sometimes forget how lucky I am that my family members can be mature enough to skip past hurt feelings and slights from divorces and what have you to find themselves en masse in a restaurant celebrating without tension, in fact with a lot of love, at least the way we do it. I knew it would be a good one when my sister-in-law, my brother’s ex (she remains my sister-in-law for good) called to say she wanted to make sure she had a family holiday to have the kids celebrate with us. Then, when my stepmother came in she said, “Oh, let me make sure I get a seat by Carol (my mom).” They are the matriarchs of this ragtag group.

Knowing this camaraderie exists makes me feel so solid, kind of the opposite of anxiety, which one could so easily get when all these people mix, who potentially might not get along at all.

I seated myself at the end of the table, down with the kids and my brother Jacob, who is no longer a kid. He’s the one in the picture with the horn-rimmed glasses (that’s my dad on the other side). Jake and I had a really good time talking. He’s so cool, getting ready to go to go to Prague on a study abroad trip where he will be learning about and visiting the concentration camps there and in Poland, all for a class on the psychology of the Holocaust. Makes me want to go back to college and start all over again. Ah, youth. Ah, school.

Moving on, my reason for writing today has to do with time. Actually, I’m doing a re-blog today. I encountered a video and discussion on the secret powers of time and was struck by so many points. First of all, just the notion of the secret powers of time seems so relevant to the overall theme of my blog. The idea that time has power over everything we do is extremely poignant, for someone who may be counting down the last 200 days of her life.

Not only that, but also in my doctoral research I was strongly interested in the concept of place; the discussion in this reblog offers a compelling argument for the social and moral reasons for the intersection of place and time.

I’m not doing this blog entry justice by hinting around at its contents. Below is a link. If you take ten minutes to watch the whole video, you will not regret it. I want to know what you think, so I will be looking for your comments: this means you ——–, ———, and ————. I could name names, but I won’t. You who never comment but have so much to say, do share your wealth of wisdom.

Just don’t use the excuse that you don’t have time.

The Secret Powers of Time

Day 207. What to Say to Someone Who is Chronically Ill

 What to Say To Someone Who is Chronically or Gravely Ill

A few firsts: People who are sick, particularly the ones who aren’t going to get better, make many of us uncomfortable. Some visitors are squeamish because there’s an unconscious fear that even a genetic illness will be somehow contagious–they just prefer not to be around “sick energy.” It’s okay to get in touch with your own feelings about this sense.

Visitors are uncomfortable as well because those “hang in there because you’ll soon recover” kinds of comments we all have been taught to bring to the sick room simply are not appropriate with someone with a lengthy illness.

 Even if this is someone you have known for a long time, and maybe have had easy conversation in the past, perhaps suddenly you find yourself tongue-tied because she is different. There she lies in the bed, small and afraid. What the hell is there to talk about then? Or the co-worker who you shared an office with suddenly is in a full body cast. He may not be able to return to work and he’s only 45. What to say?

While things may seem different on the surface, remember that the essence of the person you know and love is still the same. Those changes and shakeups are massive for the person who is ill as well, so the biggest favor you can do is to be yourself.  If you are the kind of friend who is serious and always talks politics, then maybe that’s what you’ll want to do.  If you always tell each other jokes, well, then by all means, tell a few jokes (but try to leave ones about sick people out). Let your presence open a window and let a ray of sunshine in the room.

As you do it, know (or say) these things:

  1. There isn’t anything TO SAY. Know that there is nothing you can do. No one expects you to, either. If this really worries you, ask yourself who made you so important? It always cracks me up how a visitor can walk into situations where someone is sick, where he or she intends to help, yet ends up drawing the attention to him or herself by wailing: “Oh, I just don’t know what to say, Frances…..I just don’t know what to do….”.Okay, I have an idea for you, then: Stay home. If you can’t figure out how to act or talk, then stay home. Seriously. Figure out a sentence or something that you can contribute during your visit so you can stop that silly act. It’s not about YOU.There’s a lot of freedom in this hard truth. There is nothing you can do to make the person better. Leave that to the healthcare experts, unless you are one: one thing that becomes extremely tiring is when people second-guess the medical care the sick person is getting. Sometimes he will ask a good friend’s opinion, but otherwise, leave the suggestions alone.
  2. Walk a mile in my shoes. Think about what YOU would want to hear if you were the one with your foot in the air.It’s so hard to know what to say when you can’t feel the pain or make it go away, and you wish you could (you can tell your friend that you wish you could make the pain go away, if you mean it, but only so many times). Instead, imagine yourself in that chair with your foot up on a handful of pillows and feel the electric nerve pain (get way cranky from it, too). Now, what do you want to hear from people? I’ll bet you will think of something nice, straight from your heart.If you really did put yourself in that place, it may have occurred to you that in that cranky space, you don’t want to hear too much of anything. Tell a joke (maybe a short one). Do something you would normally do as friends: watch a movie, eat popcorn, gossip about other friends, play a video game, play blackjack. Whatever. It doesn’t need to be momentous. But when you don’t feel good, too much of anything is exhausting.
  3. Is this a good time?” (better yet, make very sure to schedule your visit). Sick people have trouble sometimes with drop-in visits. Sometimes they have trouble with scheduled ones, if their bodies aren’t cooperating. Make sure to ask if it’s a good time, and offer full forgiveness for rescheduling.
  4. How are you?” This is just fine, as long as the visitor says it in just the same way he would say it to another friend, and not in a worried tone with concerned eyes. Once again, walk a mile in my shoes. How would you like people to get all worried and say, “How are you, old chum?” forty-two times a day? But somebody coming in and saying, “Hey! How are you?” all cheerful might really cheer a person up. It gives the sick person permission either to talk about his illness if he needs to, or wants to, or just to gloss over it, if he don’t feel like it. Take the hint from which way he heads on that one. Got it?
  5. I understand if you don’t feel like talking about being sick.” Seriously. There’s no …but… after the “sick” in that sentence. Throw that sentence in any time the conversation gets personal. Please don’t “pump” for information. Your need to know is not more important than the comfort of the sick person, which is why you came in the first place.
  6. Hey, I brought cards (Yahtzee, Jenga, whatever) with me. Are you up for a game?” I love this. It takes all the pressure from the visitor (whew!) as well as from the sick person at the same time. Of course the sick person can always say, “Sorry, I am not up for that today.” But you still look really cool for having thought ahead and brought something fun to do. If you do end up playing, though, be prepared for play to go slowly, and be understanding about memory errors and the like. Whatever happens, sometimes the comfort of game time allows the sick person to open up and talk about what’s bothering them. Listening is all you can do. Remember, there are no solutions to what is happening.
  7. “I’ve got a coupon for a free car wash in my pocket. Can I take your car for a wash?” (You may have to stretch the truth on the existence of that coupon, but it will be for a good cause.) Getting things done for someone with a chronic illness like Rheumatoid Arthritis, Fibromyalgia, Traumatic Brain InjuryEhlers Danlos Syndrome (or any of the many chronic pain diseases) can mean that their day can last longer. I know that I am good for one event every day. My exhaustion tolerance allows me to handle driving, getting out of the car, dealing with whatever is there, and getting back in the car, one time. Then I’m finished for the day. When I do it twice in a day, I’m usually out for the next day or two. I am sure I speak for many when I explain my situation. So, by doing something that is relatively meaningless to an able-bodied person, it’s almost like creating a whole extra day in the week of the chronically ill person.
  8. Did you get an invitation to the x party? I’m going, and I’ll give you a ride there and back. I’d be happy to leave whenever you want to—in fact, I wasn’t planning to stay long at all.” I learned this from a friend of mine. If it weren’t for him, I wouldn’t get  to parties at all. Getting ready was challenge enough; driving downtown, finding a place to park, etc., etc. were challenges that seemed beyond my abilities. So when my friend, Jarrod called and offered to help, I started being more social. (Other friends followed suit.) Offer to help a friend get somewhere fun.
  9. “What’s your favorite movie/book/food, etc.?” It’s great to bring over some fun thing to eat or do, which you can leave with the person after you’re gone. I still have great movies and books people have brought me when I have been very sick and hospitalized. Take care to find out about food allergies common among the chronically ill. When I was in the hospital for five weeks, people were so kind and found out that I couldn’t have flowers in my room, so they sent Edible Arrangements of fruit that looks like flowers.  Yum!
  10. “This has been lots of fun, but I have got to run.” Huge mistake people make:  thinking sick person equals lonely person. When I come I am obliged to stay all afternooooooon. Oh, please don’t do that to a sick person. Here is the rule: Don’t stay too long. Don’t stay too long. Don’t stay too long. Have one conversation, maybe let the subject change once.  That’s enough, unless the person asks you to stay longer, or if the game is taking longer and she is enjoying herself.  You can ask, “How are you doing?  How is your energy level?”  But speaking for myself, it is very difficult to be honest—or to assess oneself properly.  A chronically ill person who is having a good time can easily miss the signs of exhaustion. After an hour or so, suggest that you can come back and finish the game another day.  You’re a great friend for coming to visit!