A Difficult Week

Temperatures are in the triple-digits here in Portland, which is not good news for people with heat-reactive MS, like me. It only compounds what was already a difficult time for me: my mother's 55th birthday was Friday, and the 11th anniversary of her death was Sunday.

Stay out of the heat, y'all....

Too Darn Hot

"According to the latest Report
Ev'ry average girl you know
Much prefers her lovely doggie to court
When the temperature is low,
But when the thermometer goes 'way up
And the weather is sizzling hot,
Mister Adam
For his madam.
Is not,
'Cause it's too, too
Too darn hot,
It's too darn hot,
It's too darn hot."

---from "Kiss Me, Kate"




The past week or so, it's just been TOO DARN HOT!!!!!

But Monday was the absolute worst...according to one station, it was over 100 degrees. So I, not wanting to end up in the hospital if I could possibly avoid it, decided to do something about it.

I'll back up for a moment and say: I've been feeling very, very sick lately. And an unexpected heat-wave that started last week was NOT helping matters at all. A few days ago, I was actually trapped on my stairs for half an hour, unable to get up and walk down or up. I couldn't keep even liquids down, and the pain in my face was unbearable. Saturday was awful, and Sunday was even worse. I watched the Weather Channel on Saturday night, horrified by the prediction of a 103-degree Monday.

Now, I do have air conditioners, but this is an old house. Even with air conditioners and fans, there's no way I could combat a 103-degree day.

That's when I decided to take the advice of some of my fellow MS-ers from my support group: I booked a hotel room for the day.

Check-in was 4PM, but after explaining the situation to the front desk clerk, they graciously allowed us to check in at 1:00, thereby avoiding the worst of the heat. Jonathan went to the room ahead of us, and turned the air conditioner on full-blast. I packed an overnight back for all of us, and headed out to brave the heat.

It was so hot, even at just a little past noon, that I could feel the heat in waves, crushing me. I nearly fell over, and had to be helped into the car. Stunned, all I could say was, "It's so HOT!"

By the time we arrived at the hotel, the room was nice and icy-cool. The kids looked upon it as an adventure, and looked forward to the promise of swimming in the hotel's pool the next morning before check-out. The room we procured was on the second floor, but right next to the elevator. It was also right next to the vending machines. A perfect room for someone with MS.

Jonathan had to work for a few hours that evening, so the kids and I settled in and made the most of it. We watched kids' shows on the TV. We ate vending-machine cookies and drank Sierra Mists, putting extras in the nice-sized fridge provided in the room. At dinner time, I ordered from a pizzeria we'd never eaten from before...and we were pleasantly surprised. The pizza and breadsticks were delicious, and the Ceasar salad I ordered for Jonathan to eat when he returned was surprisingly large for the small price. I am disappointed that there isn't one closer to our home, that we could order delivery from more often.

To wind down the evening, Wren played her Game Boy while Phoenix read the first few chapters of Terry Brooks' "The Elfstones of Shannara," and Eden played on the floor in front of an episode of SpongeBob. I myself brought along my well-read and much-loved copy of Carole Nelson Douglas' "Six of Swords." I pulled a chair up in front of the air conditioner and just enjoyed myself, feeling closer to "normal" than I have in weeks.

It wasn't total bliss, however. When it came time for sleeping (and my much-anticipated Monday viewing of "Hell's Kitchen"; I am a big Gordon Ramsey fan), Eden decided to rebel in a BIG way. At first, she just jumped on the bed she was sharing with her sister. Then she began to throw a huge temper tantrum, screaming and kicking for a good 45 minutes, making me appreciate another quality to that particular room: no neighbor was booked on one side, and the elevator was on the other. She may have been loud, but thankfully, we were the only people who knew it.

No sooner did Eden and Wren finally fall asleep, than did Phoenix had a problem. He'd brought along his sleeping bag, intending to sleep on the floor...but it was too uncomfortable. He tried, the poor thing, but it couldn't be done. I then saw that the girls were only taking up maybe a third of the bed they were in, so Phoenix jumped in and slept at their feet. It was adorable.

When Jonathan returned, we watched TV and ate salads, completely comfortable in the cool room....which, by that time, was far cooler than our house has ever been. He went to sleep easily...sadly, I was not so lucky. The pain I've been struggling with would not let go of me, even in this much-cooler environment. So I stayed up all night, as I have pretty much every night for the past two weeks. Hot damn, am I tired...

The next morning we partook of the free continental breakfast...which was very nice: English muffins, banana-nut muffins, Cheerios for the girls, and fresh fruit.

Shortly afterwards, we hit the pool. My plan had been to go out there with Jonathan and the kids, and if Eden threw a fit, to take her back to the room. I had no plans to be out there for more than a few minutes or to get into the pool...but I discovered yet another bonus to this hotel: early in the morning, half of the pool is completely in the shade! The water was icy cold. I actually got into the pool, the first time I've been able to swim out of doors in probably 7 or 8 years. As for Eden, she LOVED swimming! Completely fearless, that one. She tried to worm out of Jonathan's arms and take off on her own! She didn't want to get out of the pool, but it was time to change clothes and check-out.

I waited in the lobby while Jonathan went to the car and got the air-conditioning going. It was just starting to heat up outside when we left, but it only got to maybe 85 on Tuesday...a big difference from Monday, and absolutely workable in our old house.

I don't know why I was so resistant to this idea for so long. All last summer, people in my support group would tell me about going to a hotel on hotter days, and how much of a difference a day out of the house made. It was such a small thing, and yet, it DID make a huge difference. I felt so much better leaving than I did going in.

I learned a few things from this experience: one, it's not necessary for me to sweat and suffer on very hot days. The hotel we stayed at was very nice and relatively inexpensive...and certainly, VERY inexpensive when compared to the alternative: three days in the hospital for steroids. I need to work on this guilt I have about "wasting" money like that. I always feel guilty if we spend money on me, because we already have to spend so MUCH money on me, that spending any more just bothers me. Jonathan is forever telling me to get over it, and now I know it's in my best interests to listen to him on this.

I also learned what I needed to bring next time, for there will be a next time (we've decided that any day that is over a certain degree will be a Hotel Day). I needed to bring better food and drinks for me and the kids, now that I know there is a fridge there. That's not to say I won't let them indulge in the candy machine; that's part of the fun. I'm also looking into a local delivery service that delivers food from various restaurants to hotels and the like. The idea of being in the hotel and munching on some good Chinese food appeals to me. I also need to bring more toys and so on for the kids, as they did get a little bored. I'm also looking into cooling clothing, because I didn't really realize how staying in the house all the time because of the heat was making me so depressed. A swimsuit for myself will also be in my bag next time (wearing a wet bra is no fun). I really loved swimming; I felt so much lighter in the water, and it was so much easier to move. And finally, we will definately bring some water-wings and swim toys next time! Especially for Fearless Eden.

I guess the lesson in this little experiment was this: it's ok to do things like this for myself. It makes me healthier and everyone in the family happier. It's a win-win situation.

Heat be damned, I WILL NOT be trapped in my house this summer! I will go to hotels. I will swim. I will buy cooling clothing and enjoy myself. And I will NOT feel guilty about it.

Every cloud has a silver lining, they say. I'm learning now that every sunbeam has one, too....

My Life With Secondary-Progressive MS: Sick and Tired....

....of being sick and tired.

As usual, summer has hit and I am struck by the MonSter. It is different this time, though. I didn't think it would be. I thought when my MS morphed to secondary-progressive it basically meant no more relapses and a steady progression of the disease. I didn't realize how much worse it was going to be. The lack of information on this is very depressing. There's a plethora of websites, books and other resources on R&R MS. But for SP? I'm finding very little. Literally, a paragraph or two. There's GOT to be more to it than that...and I think I'm beginning to realize that there IS more to it than that.

I am so very, very tired. The kind of tired where your muscles ache and burn and you can feel it in your bones. It reminds me of the time when I, in a moment of pure madness, decided to walk the bike trail from Xenia to Yellow Springs in Ohio. All while pushing my son in his baby stroller! When I finally got to the cafe, I felt like I had been walking for years. And that's what this feels like: like I've been walking for years. Like I walked from Xenia to Yellow Springs again, just this morning.

On top of being tired, I am also struck with weakness. My legs wobble when I walk. They shake, visibly. The entire leg, not just the calf like I am used to, but all the way up to my thigh. I feel like I'm auditioning for an Elvis tribute band every time I try to walk down the stairs. And walking up the stairs? It's taking forever. I feel as if I am literally pulling myself up by the banister. I find myself avoiding the stairs whenever possible. When I DO climb up the stairs, it takes several minutes for me to feel "normal" again. Climbing the stairs in your own home should not be this taxing on a person's strength...and yet, it is.

The weakness in my legs is also making it very hard to walk in general. The canes I bought for "occassional use" two years ago have now become everyday necessities. I can't even recall the last time I left the house without one. I can barely walk IN the house without one, most days.

The weakness isn't just in my legs, either. My arms, my hands, are also affected. Signing my name has suddenly become a Herculean test of strength. Brushing my hair makes my arms burn as if I've been practicing for a weight-lifting contest instead of just trying to make my hair look like it isn't the result of my putting a wet finger in a light socket. I no longer trust myself to carry hot food from the kitchen to the table (especially after the infamous Chicken Soup Burn Incident). I drop things constantly, and when I visit my goddaughter, I prefer to be seated when holding her. I've never dropped a baby in my life...and I'd like to keep it that way.

I am also finding that minor problems I have had for years are becoming major problems. I'm in the bathroom constantly (I've yet to respond well to a medication to control that). My muscle spasms have gotten so much worse that I've gone from taking one Baclofen a day (as I have for at least four years now) to taking three or four. The nerve pain and sensations are so much worse; the worst they've been since my awful trial on Neurontin (a long story for another day). Trying to fall asleep at night has become a little bit like waging war on my own body: will the pins-and-needles stop? Will the nerve sensations go away? Will my muscles start spasming as soon as I finally drift off to sleep? How many times will I wake up in pain, or needing to go to the bathroom...so I can do the whole rigamorale over again?

This is not like the R&R MS. It's like R&R MS, intensified.

All in all, I feel very much like an invalid lately...and that's something I am not used to. I am sleeping more and getting less out of it. The slightest bit of excertion leaving me in pain and reeling from fatigue.

I just have to wonder: am I feeling like this because it's summer and the MS is spanking me like a bitch, or am I feeling like this because this is what secondary-progressive feels like?

I wish I knew. I keep looking for the answers, and no one will tell me. The lack of information on secondary-progressive MS is astonishing. When I do a websearch, I get plenty of definitions on what it IS, but no real, useful information as to what I can expect or how to cope with it. Each site just keeps regurgitating the same story over and over: the percentage of people who get it, and it's a "progression with less or no relapses." Yeah, I get that. But what does that MEAN in my day-to-day life? On most sites, the only mention of it at all is in a breakdown of the various forms of multiple sclerosis. I know all of that already...what I don't know is: is how I am feeling normal? Is this what I need to expect? How do I know when it ISN'T normal? I keep hearing about going to the hospital for steriod treatments when it "gets too bad." Well, how do I know when it's "too bad"? What are the signs of needing to go into the hospital? What happens if I should have already gone, but I didn't know?

Let's take this one MS site, for example. This is the extent of the information they have on secondary-progressive MS:

Secondary-progressive MS
Without treatment, Secondary-progressive MS, formerly called chronic progressive MS, develops within 10 years in about 50% of people who have had relapsing-remitting MS.

Some people with secondary-progressive MS have relapses, but many do not. In time, people with this condition experience a gradual and continuous increase in symptoms and disability.

Fifteen years after being diagnosed with Secondary-progressive MS, some people may require walking aids, such as a cane, and others may need use of a wheelchair.


This is typical of the information on the Web concerning secondary-progressive MS. How exactly does this information help me? The first paragraph is just statistics, meaningless when you've already been diagnosed with SP. The second paragraph is too vague to be of much use. And the third? I was ALREADY walking with a cane when I was diagnosed with SP! What does that mean for me?

That's basically what I'm finding online, folks. Statistics and vague definitions. And the stastics change from site to site, rendering them pretty much useless.

And so I turn to my support groups. These are usually incredible fonts of information: first-hand accounts of what it feels like to have MS and what may or may not help. I have learned so much from my groups over the years; they have been truly invaluable.

But now I find, that like the Internet, they have little to offer me in the way of practical information and advice. The vast majority of people in the groups have R&R MS. In most of my groups, I am the only person with secondary-progressive. If there ARE others in the groups with SP, they are choosing to remain silent about it for whatever reason...I post and I post, asking for info, and getting nothing. I'm not ignored. People respond, but it's with "sorry, I don't have the answers, I wish I did."

It's frustrating. I feel like I am running in the dark. I don't know where I am going and I'm not sure what direction to run in.

People who don't have MS are now advising me, "Ask your doctor." They mean well, and I politely thank them for their input. But honestly, do they think I've never thought of that on my own? That I haven't tried just that? Doctors are more vague than that website! I get the same "each case is different, so it's hard to tell how yours will progress" lecture I've been getting since I had R&R MS. Occassionally, a doctor will direct me to an MS website...which, as we know, tells me little to nothing. Or they'll hand me a pamphlet, which has the same info the website has.

So what now? I plan to go to Powell's soon and look for books. Maybe someone's written about this form of the disease, and that will help me. I'm thinking that looking at online bookstores for possible titles and so on wouldn't hurt, either. I just refuse to believe that there isn't some practical information, somewhere. Depending on where you get your statistics, anywhere from 25 to 50 percent of people with R&R MS will get SP. Surely, SOMEONE has written about it?

I hope so, earnestly. I hate running in the dark.

Checking In....

...to let everyone know I'm still here.

It's been a weird month or so for me. My mother-in-law and sister-in-law were here for ten days, and the house was pretty crowded. We're now looking into buying a home. Personally, for me, it's got to have a master bathroom. I'm sick of schlepping up and down the stairs five or six times a night.

I used a scooter for the first time while my in-laws were here, at Jonathan's insistance. We went to the Oregon Zoo, and usually when we do the Zoo, I am exhausted by the end and sick for a week. Well, I took the scooter...and it was surprisingly easy and effective. I am now seriously considering buying one for occassional use.

A few days ago, I met a friend from the message boards. We met at Powell's, and I had a great time. She has the lightest blue eyes...very striking. And her son was just adorable.

I'm getting a little worried about the upcoming summer, because I am already having trouble with the heat and it's only April. It may be time to invest in cooling paraphenalia. I don't want to be stuck in the house all summer long this year. I'm tired of living that way.

On the plus side, I've been able to stay out of the ER for some time now. On the negative side, the last time I went was probably the most frustrating visit ever.

I had terrible pain in my side and other symptoms that pointed to either a bad UTI or a kidney stone. I called the doctor on call, who told me to go in. Now unfortunately, this coincided with a bad bout of the facial pain. I was handling the neuralgia, but dealing with both pains was more than I could tolerate. I kept trying to explain this to the nurse and then the doctor, but they couldn't understand me. They thought I was there for pain meds again. I kept trying to explain that yes, my face hurt, but I was more concerned with the kidney issue. It finally got (sort of) straightened out, and I got some antibiotics: my reason for going in the first place. Then the doctor gives me this long, drawn-out lecture about not coming into the ER for pain meds. Excuse me? I hadn't gotten any, didn't want any. I tried to explain this, but once again, the facial pain made it difficult to talk and nearly impossible for the doctor to understand me. I tried to ask for paper and pen, but was pretty much ignored or misunderstood. I gave up trying to explain myself and resigned myself to listening to the lecture.

And then came the kicker...remember that last time I was in the ER, when the doctor on call supposedly told the ER to refuse treatment? This doctor told me that apparently this was a PERMANENT order. They weren't to treat me for pain again, ever. Period. I showed her my pain management contract, which does give me clearance to come to the ER so long as I call the doctor on call first. The ER doc told me that it didn't matter. "My" doctor (meaning the on-call doc) had ordered the ER to withhold pain treatment from me. I told the doctor that there had been a mix-up, that my regular doctor was aware of the problem and that the contract was the final word, not this on-call doctor's (or the PA, whichever the case may be). She flat-out did not believe me. TOLD me she didn't believe me. She then accused me of lying to her about the last time I'd been into the ER! At first, I had no idea what she was talking about. Then I remembered her asking me, earlier on, about the last time I'd had my pain treated there. I had told her it was back in January. Now this ER doctor was livid with me because she'd looked up the record and seen that visit to the ER when I had NOT been treated a few weeks ago. I tried to explain myself, that I thought she wanted to know when the last time I had been treated here was and that during the visit in question I had not been examined nor treated. The ER doctor continued to insist I had lied for some ulterior purpose, although what that is, I have no idea. I didn't want to argue, really couldn't argue with my face the way it was. I just sat, dumbfounded, and listened to her rant at me.

Again and again, she kept telling me that she "wasn't comfortable" giving me pain meds. I would try to tell her I didn't WANT any, but she would tell me to not interrupt her. She droned on and on about how "important" it was for me not to "use the ER to treat chronic pain." I'll admit, my patience was running thin at that point, as there seemed to be no end to her lecture. I finally said to her, "My doctor has given me a contract. I call in, and they tell me to come to the ER. What am I supposed to do, NOT follow my doctor's orders?" The doctor didn't understand me, and it took a few times before she finally got the jist of what I was saying. And her response? Basically, that I have to "learn to live with it" and that I have a bad doctor! "I'd look into finding another doctor, if I were you." WTH?

She was finally done with her nearly ceaseless ranting and left the room. I didn't know whether to laugh, cry or sigh. I sighed.

I'm still not sure WHAT is going on. I don't know if there is a permanent order, or if this particular ER is just sick of the sight of me, or what have you. But I do know this: I no longer feel comfortable getting care there. ESPECIALLY if there is this misconception that I am NEVER to be treated! And who, exactly, made THAT order, anyway? I still don't know who lied to me: the on-call doctor, or the PA. I'm starting to think the PA is the source of the trouble, and the hospital wants me gone.

You know, you hear about the shithole our nation's health system has become, but you don't really KNOW until you end up smashed in the cogwheels of the demon machine....

"Heat Reactive"

This past week, we here in Portland enjoyed an unexpected bout of warm weather. More accurately: some enjoyed it. Others, suffered it.

MS is heat-reactive. This means that heat from any source (weather, fever, even thick clothing) can cause symptoms to exacerbate. Studies have shown that for many people with MS, just one degree can cause problems.

Now, not everyone with MS has a difficult time with heat; there are some who either have no problems with it or consider the problems negligable. I am not one of those people.


I thought I would take a moment to describe just what "heat-reactive" means in my life. I may add to this list as the summer rolls on:

*It means never turning on the heat in my bedroom, even in the winter.

*It means running the air conditioner nine months out of the year.

*It means never wearing a jacket if it's more than 60 degrees outside.

*It means no long-sleeved shirts, unless I'm sure wherever I plan to be is well air-conditioned.

*It means calling everywhere I go, before I go, to make sure it is, in fact, well air-conditioned.

*It means avoiding the places that aren't.

*It means horrible fatigue in the summer, even when I've had the air conditioner on. Somehow, my body knows when it's gotten warmer outdoors.

*It means wondering how my body knows when it's warmer outside but doesn't seem to know I need to go to the bathroom until it's an emergency.

*It means skipping trips to the zoo, the park and the swimming pool with my kids.

*It means feeling guilty because I have to.

*It means being sick to my stomach for months on end, and feeling like I never keep a meal down for longer than ten minutes.

*It means having increased difficulty with my memory, concentration and attention span.

*It means feeling like a prisoner in my own home all summer long.

*It means staying indoors on my birthday, which happens to be in July.

*It means having my food brought to me inside, while everyone else stays outside for a BBQ.

*It means taking a mister with me when I do go outside, and making sure it doesn't hit me in any embarassing, Fergie-from-the-Black-Eyed-Peas areas.

*It means having to choose between the discomfort of the heat or the discomfort of the cooling vest.

*It means having all those symptoms that were just minor irritants in the wintertime become major pains in the ass all summer long.

*It means taking a nap in the heat of the afternoon...because I simply have no other choice in the matter.

*It means making all appointments early in the morning, and hoping it doesn't get hot earlier than anticipated.

*It means bloating up and looking as if I've gained 15 pounds...all while not being able to keep down any food.

*It means drinking water all day, every day...and feeling like I'm dying of thirst if I go more than ten minutes without it.

*It means keeping a carafe on the nightstand and thinking, "My grandmother used to do the same thing."

*It means endless appointments to the doctor, when I should be inside.

*It means endless trips to the ER at night, when I should be inside.

*It means constantly cancelling appointments and plans, because the weather that was supposed to be "windy and partly cloudy" ended up being "hotter than a tin roof in Texas."

*It means being too tired and sick to keep those appointments and plans anyway.

*It means legs that are either too wobbly to walk without a cane, or hard as rocks from muscle spasms.

*It means being constantly worried that you'll end up throwing up a much-needed medicine, which will then make you sicker, causing you to throw up even more.

*It means actually being relieved when a pharmacist tells you, "Yes, we carry that medication in suppositories."

*It means wanting to smack the next person who says, "But you don't LOOK sick!"

*It means hoping they were telling the truth.

*It means not knowing what to say to people when the call and ask, "How are you doing?"

*It means having strangers assume you are drunk, thanks to trouble walking straight and slurry speech.

*It means wishing you were drunk, so you wouldn't care what the strangers thought.

*It means not thinking about getting drunk, because the last thing you need is a hangover.

*It means piercing headaches every single time you step outdoors.

*It means hating anyone who tells you on the phone, "Of course we have air conditioning!" but neglects to tell you that the owners of the place are too cheap to actually turn it on.

*It means always carring with you: a toothbrush, perfume, extra medicine, mints, bottled water, wet naps and extra underwear.

*It means hoping that no one will see the extra underwear and ask you why you are carrying it around with you.

*It means wishing that great outdoors concert was indoors, and then realizing how hot it would be inside a club with a million people right now.

*It means listening to people tell you how great medical marijuana is, when all you can think is, "The LAST thing I want is to be around something else that generates heat!"

*It means having to explain to every doctor, nurse, relative, friend and well-meaning passerby why you're so sick in the summer.

*It means having at least half of them not believe you.

*It means having the other half say, "Why don't you just eat an ice cream cone?"
or, "Wear white, it will keep the heat away."

*It means wishing white really did keep the heat away enough to matter.

*It means having people constantly tell you to move to a "colder climate," not realizing that while cold isn't as bad as hot...ice, wind and snow are not exactly friends to someone who has trouble walking.

*It means explaining to people that you DID move to a colder climate, and the heat still sucks.

*It means sitting at dinner tables and eating nothing.

*It means having to explain why putting a heating pad or hot water bottle on sore legs is only going to make matters worse.

*It means wishing they didn't.

*It means getting cabin fever in the summer when everyone else got over it in the spring.

*It means finding invitations to cookouts and parties on boats from your husband's co-workers in the trash, because he didn't want you to see them and feel bad.

*It means eating late at night, even though you know it's going to make you gain weight and despite the fact that you must now eat alone, because you're more likely to keep the food down then.

*It means keeping a lot of Lysol in the bathroom.

*It means always knowing where your cane is.

*It means forgetting everything else.

*It means appreciating winter more, and while everyone else is complaining about the rain...smiling and sighing in relief.

*It means knowing that you'll have to go through it all again next year.

*And most importantly, it's knowing who loves you and being glad they do...because with how grouchy you are in the summertime, if they didn't love you, they'd be history.

Hurtful Things

(Note from Zen Angel: I was having difficulty with this post...it kept changing dates on me, and new posts would appear under it rather than on top...so I had to delete the original
& am re-publishing it now. I went ahead and posted Amanda's comment below, so it
would not be lost. Sorry for the mess.)


Hurtful Things

I belong to an online support group of people with MS. It's been such a gift to me, over the last few years. Each week, we have an "open-ended" chat, where we can discuss anything we like (MS-related or not), and we have a "topic" chat. The topics change every week.

This week, the topic was "Hurtful Things." We were supposed to examine hurtful comments or actions by friends related to our MS diagnosis (we've discussed family in the past, and as we all know...there's a big difference between family and friends). The goal being, to determine WHY it was so hurtful, how that impacted our relationship with the friend(s), and what we learned from it.

It was a difficult topic for me, and I ended up being pretty "silent" during the chat. I am now thinking that this was a bad move on my part, that perhaps maybe I do need to examine those "hurtful things" that were running through my mind during the chat but didn't make it to my keyboard.

And lucky you...I'm sharing them here. Well, it's my blog, and all that.

There are two "hurtful things" that I've been thinking about since the chat. One is kind of non-specific, and one is definately a specific incident. The non-specific one I have already discussed here before...the "fair weather friends" who quickly abandoned me when I got MS. The specific incident, I haven't shared here, or talked about, in some years.

It happened on Halloween, four or five years ago. I had been very sick that year, but was improving. So much so, that I accepted an invitation by a friend, "Julian," to come see the debut performance of his band at a local nightclub. I had not been able to enjoy an evening out in a very long time, and I was greatly looking forward to it. Jonathan stayed home with the kids, and a mutual friend, "Kim," went with me. We both dressed up as sort of dominatrix-sisters. It was fun.

When we arrived at the club, I found out that Julian had forgotten to put our names on "the list," so I had to stand outside in line. Now, normally, that wouldn't be a problem...but my legs had been giving me trouble all year, and I had been counting on that early admittance. There was nowhere for me to sit, and I had to sit on the curb...with my cane and Kim to help me up and down. In front of a lot of people. It may seem silly, but that was embarassing to me. In any event, I wasn't going to let it ruin my evening, and was still looking forward to the show.

A few minutes before the doors opened, another mutual friend, "Donna" arrived...with her seven-year-old son, "Allan." I had two problems with Allan's presence: one, it was almost two in the morning, what on Earth was this child doing out, downtown, so late (at a night club, no less); and two, he was dressed in faux moccassins, buckskins and headdress. The first disgusted me as a parent, and the second offended me as a Native American. But it wasn't my kid, and once again, I chose to overlook it all because I was bound and determined to have a great time.

The doors finally open...and again, I'm in trouble. Stairs, stairs everywhere. No elevators, no ramps (I have no idea how this building gets away with being so completely inaccessible. Maybe it's historic? I don't know). And after standing for so long and struggling with the curb...the stairs looked, to me, like Mount Everest. And felt like it, too, once I was finally up them. I was close to collapse by the time Kim got me to a table. Adding to my problems is the fact that the place is not air-conditioned. My MS is heat-reactive, and no air conditioning equals big symptom flare-up for me. Still, I am trying to make the most of it, and hoped to cool down with a drink...with lots of ice.

Julian sees us, and rushes over to ask why we hadn't come in for the sound check, only then realizing that he had forgotten to put us on "the list." He shrugs it off, no apologies. I am a bit peeved. He buys me a drink, and all is forgiven.

After a few minutes, Julian takes off backstage to get ready for the performance. I am on drink number two, and beginning to enjoy myself. A few casual acquaintances join us at the table. The drinks are good, the conversation excellent. I am having a great time.

Then...the spotlight on the stage turns on, and we all quiet down for the show. An older man, dressed like a monk, is standing alone at the microphone. For a moment, he says nothing. He reaches into his pocket and pulls out some index cards. Then he begins to speak.

To my absolute horror and astonishment, it's a long poem about the "red man's savage god" and "primitive cries to the heavens, ulalala ulalala yahalalala!" I am speechless. My first thought is, "Julian must not have known about this, this guy must be with some other band."

I am wrong.

As soon as the "poem" is over (finished with a pathetic, two-minute-long war-whoop), the curtain rises...on Julian's band. They begin to play, some pretty decent goth-metal type music. And there, in the forefront, pretending a sacred dance of which he has absolutely no knowledge...is Donna's son, Allan. War-whooping and acting for all the world like a tiny, hyperactive Tonto.

I am stunned. I am horrified. I am hurt.

The people at my table, and many at other tables, are staring at me. One of the beforementioned casual acquaintances whispers to me, "Ah, man...I am so sorry about all this. I can't believe they did this. Are you ok?" I hear a man behind me ask someone unseen person if I am going to "do anything about it."

I decide that yes, I am going to do something about it. I got up, and I left. I did not care, at that moment, if Kim came with me or not...but I am glad to say that she did.

We caught a cab home, and the whole time I kept thinking...this was my first night out after a long, long MS attack. And I spent it, listening to a poem insulting my spirituality, my ethnicity, my people. And to top it off, my friends knew all about it. Julian, Donna...they orchestrated this, as part of the show. They actually thought it was a good idea. I was struck by the conclusion that they were either A) racists, set out to humiliate me and mine, or B) ignorant shitheads, who didn't actually stop to think that this sort of display would be hurtful or offensive to anyone...much less, their one American Indian friend. And as much as I, in my anger and hurt, wanted to believe it was A, I knew in my heart it was actually much more likely to be B.

For several days following the show, I did not speak to Julian. I did not trust that I would not say something that could not be unsaid. And so, I kept my silence. I later found out that Kim had not been so inclined...she had called him the very next day and read him the riot act. Apparently, it really was B, after all. It had not occured to him that Allan's "dance" would offend me, and he claimed he was unaware of the monk's poem (the monk turned out to be a relative of one of Julian's bandmates). I still find that hard to credit, as the poem and the "dance" were clearly inter-connected. I accepted his apology, but it saddened me that after being my friend for so long, he had learned so little from me. I was also saddened when he told me that he felt that I, also, had acted wrongly...that I should have stayed until the end of the show (another hour), and spoken with him then. Which told me that he didn't understand at all.

He didn't understand how hurt and offended I was. He didn't get that it wasn't just the contents of the poem and the "dance." It was the fact that I spent what little energy I had, and had in fact had to struggle most of the night to get to the show, to only be hurt and offended. He didn't understand that as a result of both the physical and emotional stresses of that night, I was sick for a week. He didn't understand the pain of my legs the next day, strained by the standing and the curb and the stairs and the heat...and the relative swiftness of my retreat. And most of all, he didn't understand that as his friend, I was willing to suffer that week gladly, just to see his band perform for the first time...and instead, what I saw was like a slap in the face. And that, that hurt far more than my legs did.

Julian and I remained friends for some time after that incident...but we are not friends anymore. But, that is a story for another time...if I tell that story at all.

So, what did I learn from that "hurtful thing"?

Well, it reaffirmed my belief that anti-Native American sentiment is so ingrained in this society, that many if not most people do not notice it when it occurs...even when they themselves perpetuate it. Julian and Donna were not racists. None of the people there were racists, as far as I know. The people at the show, these are the people who hate racist skinheads, who are pro-gay marriage and pro-ERA. The kind of people who have "hatred is not a family value" stickers on their cars. And yet...they wrote that poem. They set up that show. They dressed up a child to mock what an entire culture holds sacred. And they did it, without a second thought.

But, that was something I pretty much already knew. Can that really count as "learning" something?

I suppose I learned that people who are not disabled often have a hard time discerning what will be difficult or impossible for a disabled person to accomplish. The owners of that club had made no arrangements for disabled persons. The manager stood right there and watched as I struggled up the stairs. It had not occured to Julian to make sure I was on "the list," so I would not have to stand outside.

More importantly, I learned that I had to be more pro-active in those matters. I cannot simply rely on others to tend to them for me. If I had to face the same situation today...I would have called the club well in advance and asked about their accomodations. I would have also made certain I was on the list, or even went with Julian and the band so that I could come in the back entrance (which I later learned had a ramp for band equipment). When it happened, I was still self-conscious about the MS. I didn't want to have to ask for help, or make a "big deal" of needing it. Today, I would see that as nonsense. So, I learned to be more of an advocate for myself, to not take for granted that an establishment would be accessible or that I could simply "muddle through." A good lesson. I don't think I realized until now that I learned that lesson on that night.

I guess I should have spoken up in my chat...I not only learned something, but it did actually apply to my MS!



1 Comments:
At 8:42 AM, amanda said...
good for you for learning the ever so hard fact that WE as MS'ers need to learn to accept help and more importantly ASK for it when we need it!!! That I believe is the hardest thing to over come living with this disease.

AS far as the Native American racism I see and hear it all the time No I am not a native but live so very close to the Seneca Nation Reservation and travel there very often it is like 20 miles or less from me. My son't step-siblings are all full blooded natives.

Burn, Baby, Burn

Burn, Baby, Burn


Well, this is what a second-degree chicken soup burn looks like, about 12 days into healing (I took this photo a few days ago). It actually extends all the way to my pinkie on top, and around to my palm near my thumb. Fun, fun, fun.

It IS healing well, though, and while it still stings a bit, the pain has been replaced by some pretty fierce itching. I keep it covered and am trying to avoid the temptation to scratch the hell out of it...

I am also under doctor's orders to keep it dry and clean....so no major housework for me (not to mention the fact that with the horrible heat wave, I can barely move anyway). While this, in theory, is quite nice...in reality, it's driving me batty. Jonathan is working all the time, covering for those on vacation, so pretty much no one is doing the heavy housework. My house is beginning to remind me a bit too much of what my mother referred to as her "liberation period," when she basically stopped doing housework after the divorce because my dad was such an unbelievable neat freak. That was a LONG four years...

Between my broken toe, my burned hand, my horrible face pain (a la trigeminal neuralgia) and the MS heat sensitivity turning me into a sloth...I haven't been accomplishing very much with my life lately. And that depresses me. I know it's silly, I know I am supposed to be resting and that doing too much right now would actually make me sick---believe me, I learned my lesson four years ago when I was incapicitated because of a near-miss with a heat stroke. Still, lying about all day in front of the air conditioner, reading books with the kids and watching way too much History Channel International is really starting to get on my nerves.

I used to love summer. When I was a kid, summers were the absolute best. Remember that? The pure, unadulturated joy of summertime? I do.

My childhood summers were split up into two parts: the half with my dad, and the half with my mom. The half with my mom involved days spent at the pool, swimming and checking out the cute lifegaurds (admission was 50 cents, and another $1.50 would get you a soda, hot dog and bag of chips). Friday nights were dances at the community center, or movies. I won a dance competition there once. I kept the certificate on my wall for years.

The half with my dad usually involved road trips to visit family in Tennessee, Florida and of course, the rez. People who go to Cherokee now, as tourists, are seeing a whole different city than the one I grew up in. The trappings that you find there now: the concerts with big-time comedians and country/western stars, the tourist shops, indoor plumbing....none of that was present when I was very young. We've come a long way, baby. And although I would never want my people to be poor again, like the were in the old days...I sometimes feel homesick for the Cherokee of my youth. For the roadside arts & crafts stands we'd put up to lure in the few tourists who would make the journey back in those days, for the big field near Mountainside where we'd play and dodge mosquitos, for the "busy" days of fishing for crawdads and running races and playing pranks. The last time I went home was several years ago...and it didn't feel like "home" to me anymore. And I cried for that. But you really can't go home again, time marches on, and all those worn-out cliches that are worn-out because they are true...

To be sure, progress has been good for my people. The water doesn't rot your teeth out anymore (making me among the last to have to deal with "reservation rot"). If you need to see a doctor, chances are, you can (and without having to leave town to do it). Tourism is good, and jobs are easier to come by. I don't hear stories anymore of people without heat or running water. Not in Cherokee, anyway...many other reservations are not so fortunate, I'm afraid. But as I said...progress has been good for the Cherokee, for the most part. But at the same time, I can't help but remember when a friend of my grandfather's years ago, when all the progress was in its beginning stages, remarking in a sad voice that "It's looking more and more like Pigeon Forge 'round here." Meaning, it was becoming more of a tourist town than an Indian town. Now, I want to be very clear on this: I'm not saying that it's a bad thing. I'm just, I don't know...missing the good ol' days, I guess. Getting older.

Literally, getting older. My birthday is next week. Which is probably at the root of all this running down Memory Lane. And all that running has tired me out. Good night, y'all...

Checking In

Sorry I haven't been posting much lately...life has been catching up to me. So I thought I would drop a few lines here to discuss what's been going on in the real-life world of Zen Angel.

On Saturday, my best friend Fizz and his boyfriend stopped by and we hung out for several hours. We had a fantastic time. Fizz gave me the cast recording for "Spamalot" as a gift (is it any wonder I love this guy?). It was the first time I had seen Fizz in person in nearly a year, and the first time I'd ever really spent any time with the boyfriend, "M." M is, to my surprise, a really nice guy. After they left, I just marvelled at how much I enjoyed his company. I really think he's "the one." They just seem so...compatible. It didn't hurt that my kids liked him, too...or that he brought me a daisy. All in all, a great night. I need to stop being such an hermit. Having a social life again would do me some good, methinks.

Yesterday, Eden had another outbreak of allergic purpura. I've written about that here before: it's a rare condition that makes her break out in a rash that looks like little round bruises on her feet, legs and back. It also makes her run a fever and get tired and cranky. I've basically spent the better part of the past two days nursing her and comforting her. Tonight, it looked as if most of them are fading, but I'm going to call and check in with our pediatrician anyway. Allergic purpura is usually not serious, but it can lead to kidney failure, so you have to keep an eye on it. This is the third or fourth time she's had an outbreak. Recurrances are very common, although most kids grow out of it by the time they are five or six. This has been the most mild outbreak yet, but I still hate to see her so miserable. Not to mention the fact that all this constant nursing has just wiped me out completely. I feel like a dish rag that has been rung out one too many times.

Tonight is the fourth of July, of course, and we are doing: nothing. Wren is still deathly frightened of fireworks. Even sparklers are totally outside of her comfort zone. And the baby is sick, so we're homebound. You can see the fireworks from my neighborhood, anyway, should we feel so inclined. Hopefully, the Redneck Asshole Neighbors across the street won't be setting them off until daybreak again this year. It makes the next door neighbor's dog freak out and bark like mad, and the noise from the fireworks, redneck party and dog is a bit more than I want to deal with right now. Yee haw.

Health-wise, I'm feeling the effects of the heat of summer. The MS-related fatigue, which I haven't had much of since becoming pregnant with Eden, seems to be back. I feel as if a giant weight were crushing me down. I literally have zero energy. I wonder how much of that is a consequence of all the nursing, though. It's probably a combination of the two: the heat and the constant breastfeeding. In any event, I'm not up to much right now. At least the pain is at a bearable level. I haven't taken anything stronger than prescription-strength Ibuprofen since Saturday (hurray!).

Hopefully, I'll be back to more regular posting here (and on BAD BABY NAMES) soon. Until then, happy 4th, everyone.