Thursday, February 28, 2008

To all who are paranoid about the name Barack Hussein

Juan Cole by way of the Daily Dish:

Barack is a Semitic word meaning "to bless" as a verb or "blessing" as a noun. In its Hebrew form, barak, it is found all through the Bible. It first occurs in Genesis 1:22: "And God blessed (ḇāreḵə ) them, saying, Be fruitful, and multiply, and fill the waters in the seas, and let fowl multiply in the earth."

Here is
a list of how many times barak appears in each book of the Bible.

Now let us take the name "Hussein." It is from the Semitic word, hasan, meaning "good" or "handsome." Husayn is the diminutive, affectionate form.

Barack Obama's middle name is in honor of his grandfather, Hussein, a secular resident of Nairobi. Americans may think of Saddam Hussein when they hear the name, but that is like thinking of Stalin when you hear the name Joseph.

For my RGBP heroes...

...a post from a Southern Baptist pastor who may be on his way to coming around. A little more time will tell.

Monday, February 25, 2008

It's great to look well, but...

Christine Miserandino's Spoon Theory for friends who want or need an idea as to what it's like:

My best friend and I were in the diner talking. As usual, it was very late and we were eating French Fries with gravy. Like normal girls our age, we spend a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spend most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me this time with a kind of start, instead of continuing the conversation. She then asked me out of the blue what it felt like to have M.S. and be sick. I was shocked, not only because she asked the random question but also, I assumed she knew all there was to know about M.S. She had come to the doctors with me, seen me getting MRI’s, she saw me stumble on sidewalks and have to sit down at a concert. She carried me out when I couldn’t walk another step, what else was there to know?

I started to ramble on about the medicines and the changes but she didn’t seem satisfied with my answers. I was a little surprised as being my roommate and friend for years; I thought she already knew the medical definition of M.S. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no healthy person can truly understand. She asked what it felt like, not physically, but what it felt like to me…having M.S.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least a stall. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a person with MS goes through every day with clarity? I could have given up and cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand? If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the “spoon theory” was born. I quickly grabbed every spoon on the table; I grabbed spoons off of the other tables. I looked her in the eyes and said, “Here you go, you have M.S.” She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked together as I shoved them into her hands. I explained that the difference between having M.S. and being healthy is having to make choices, or to think consciously about things when the rest of the world doesn’t have to. The healthy have the luxury of choice, a gift most people take for granted.

Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to take away, since most people who get M.S. feel the “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case M.S., in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time. Little did she know how serious the game would become.I asked her to count the spoons. She asked why, and I explained that the spoons represented units of energy and when you are healthy you expect to have a never-ending supply of “spoons.” But when you have M.S. and you have to plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started the game yet.

I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has M.S.

I asked her to list off her day, including the most simple tasks. As she rattled off daily chores, or just fun things to do I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said, “no, you don’t just get up. You have to crack your eyes open and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and you have to make yourself something to eat before you do anything else because you have to take your medicine and have energy for the day and if not you might as well give up on spoons for the whole day!”

I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her another spoon, just washing her hair and shaving her legs. Reaching too high or low, or having the shower water too hot and choosing to blow dry her hair would have cost more than one spoon but I didn’t want to scare her too much in the beginning. Getting dressed is worth another spoon.

I stopped her and broke down every task to show her how every detail needs to be thought about. You have to see what clothes you can physically put on, what shoes are going to be appropriate for the day’s walking requirements, if pain or spacticity is a problem, buttons are out. If I have bruising from my medication, long sleeves might be in order. You cannot simply throw clothes on when you have M.S. — it’s just not that easy.

I think she started to understand when she theoretically didn’t even get to work yet and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons” but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who has M.S. lives with the looming thought that tomorrow may be the day that a fever comes, or an infection, or any number of things that could prove disabling. So you do not want to run low on “spoons”, because you never know when you truly will need them.

I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of the real day for me. We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing on her computer for too long. She was forced to make choices and to think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had two spoons left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out to dinner, she might be too tired to drive home safely without having blurred vision or forgetting to turn her lights on. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think maybe finally someone understood me a little bit. She had tears in her eyes and asked quietly, “Christine, how do you do it? Do you really do this everyday?” I answered that some days were worse than others , some days I have more spoons than most. But I can never make it go away and I can’t ever for a minute forget about it, I always have to think about it. I handed her a spoon I had been holding on reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve, you need to always be prepared.”

It’s hard, the hardest thing I ever had to learn is to slow down, and not to do everything. I fight this very day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel the frustration. I wanted her to understand that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather and my own body before I can attack any one thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between having a chronic illness and being healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count my “spoons.”

After we were emotional and talked about this for a while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug and we walked out of the diner. I had one spoon in my hand and I said, “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste every day? I don’t have room to waste spoons and I choose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they look at their own life a little differently. I think it isn’t just good for understanding M.S., but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the words, every time I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons.”

Sunday, February 24, 2008

The Witness of Barack Obama

I am a Christian, and I am a devout Christian. I believe in the redemptive death and resurrection of Jesus Christ. I believe that that faith gives me a path to be cleansed of sin and have eternal life. But most importantly, I believe in the example that Jesus set by feeding the hungry and healing the sick and always prioritizing the least of these over the powerful. I didn't 'fall out in church' as they say, but there was a very strong awakening in me of the importance of these issues in my life. I didn't want to walk alone on this journey. Accepting Jesus Christ in my life has been a powerful guide for my conduct and my values and my ideals.

Can't stand the title but like the content

A piece in today's WaPo on liberal evangelicals. We exist.

Friday, February 22, 2008

Thoughts while watching a performance of Mahler's 9th on ETV

Massive forces marshal
Many minds meld
Multiple melodies meander as
Maestro motivates moving from memory

Sounds bounce bound
Tease trickle,
Wail whisper
Quip question
Call cajole
Jeer jolt
Demand declare
Shimmer soar
Ripple roar
Lilt languish
Clash collide
Converse callude
Mingle marry
Diverge divorce
Resolve reconcile and release.

Thursday, February 21, 2008

Catching Up

Last Friday the 15th I started the morning early by greeting my friends who work in the out-patient department at our local hospital. I'm used to seeing them when I'm wearing a ID tag as chaplain. This time I was wearing the ID wristband of a patient.

It was finally time to be done with the kidney stone I first referenced back in September. It made it quite clear that it was going no where of it's own accord. Unfortunately, the only option left because of location and size was cystoscopy...not exactly a square peg in a round hole but you get the idea.

I applaud anesthesiologist! Mine helped me go to a very nice place to rest quietly while everybody else went to work to get that little bad boy out. I applaud the recovery room nurse who, when I got back from the nice place I'd been, was ready with a syringe of morphine to ease the transition into a painful reality. Since the stone had grown to 7mm and the tube where it was residing is only 2mm, it had become partially embedded and required that a stent be left behind. A craggy stone was gone but another foreign object, smooth though it is, remains for a time.

One memorable conversation from the morning was with the MD serving as anesthesiologist. She is a beautiful young woman who, at first glance, looks like she just came off the sidelines of a college football game and changed from her cheerleading uniform into her scrubs. Friendly, happy, smart and engaged. This was no Valley Girl. After the usual introductory niceties, she said, "Your chart is marked "healthy and normal". You look healthy and normal but I see a list of several medications that suggest otherwise." Kim piped up, "He's a healthy, normal man with multiple sclerosis." The light came on for her and a lively discussion on the role each individual medication played in my course of treatment ensued in which she was delighted in her role as "student" to an area that she had some professional knowledge but very little personal exposure. I deeply appreciate a physician that does not bluster or cover over things he or she doesn't know and sees a patient as someone who can teach them.

Thursday, February 14, 2008

What Were They Thinking?

I spent a while in a doctor's waiting room this afternoon. It happened to be a new waiting room for me because urology is a new specialty I require as of late. The office was in one of three "malls" for physicians attached to the newest mega-hospital in our region. The room was rather small - 18 seats total - with barely enough room to cross your legs without kicking your neighbor. I was alone. A couple of my fellow patients in waiting had spouses along. There were four or five empty seats in the room.

Into this space entered two other patients-in-waiting. Each of them had a spouse. Plenty of room, right? Right - except for the kids - three of them - PER COUPLE. Four or five seats divided by 10 people in an already "square-foot challenged" space.

One couple had three daughters that I'd guess were 10, 12 and 15. Dad was the patient, obviously well known to the office staff and popular with them.

The other couple had son/daughter/son - I'd guess 9, 7 and 4. Mom was the patient. Dad, who had come along to "help" promptly appropriated one of the open seats for himself and fell asleep. Mom was feeling less than 100% and was happy to let the 9 & 7 year old have a cell phone apiece to play games -- with the SOUND ON...LOUD. The 4 year old, middle name had to be Flubber, didn't have anything to play with and wanted what brother and sister had.

When to door to the "inner sanctum" opened and my name was called, it was like the gates of heaven had opened.

Wednesday, February 13, 2008

Psalm 98:8 (with a little addition)

Let the rivers clap their hands; let the mountains shout together (and spotted dogs bound through fresh snow) for joy.

Friday, February 08, 2008

Tuesday, February 05, 2008

Friday, February 01, 2008

Approaching 4000

New Friends

I spent time yesterday in a meeting with other self help group leaders for the Mid-Atlantic Chapter of the National MS Society. Since I'm a rookie in the effort, it's the first opportunity I've had to be with other leaders. Some of these folks have YEARS of experience in group participation and leadership. They deserve high commendation for their devotion to others who live life with MS. It was invigorating to soak up their practical knowledge and unique wisdom.

Some, like me, motored into and about the room carefully and sometimes tentatively on their own two legs. Others were there on the power of electric scooters or chairs. The one who got up the earliest and spent more time on the road to attend was in chair that was powered only by her enthusiasm and her devoted husband/caregiver.

In a meeting moderated by the two saints who run the South Carlina office of the Mid-Atlantic Chapter, we pooled our passion, employed our experience (wide and varied), commingled our concerns and synthesized our insight to meet and overcome obstacles to effective service to and with others with MS.

I look forward to future opportunites to be with these new friends!