THE ODDS (Debbie Does ALS)


Expiration Dates

Yesterday Jenny and I spent a lovely day doing filing at my office. A gargantuan project, one that required her organizational skills and, now, her strength. She was amazing.

I'd worn a sweater over a tank and became quite hot with all the lifting and moving, so off came the sweater. The twitching was SO obvious...I called Jenny over to look at my bicep and she also saw the forearms, the shoulders, the hands. All plural, because it is right and left.

For some reason this made me think of Blade Runner--you know, about the replicants that have a predetermined and relatively short life span. I started thinking about expiration dates. We all have one. We all expect we're going to live a relatively long life. If we are taken early, we don't have time to think about it.

I think about it. I wonder how long I will live after I am functionally disabled. It's so surreal to think about one's own life in this way. It makes me think about how I'm living my life right this minute. Am I making the most of it?

I'm not being gloomy now, I'm actually fairly dispassionate at the moment. I guess because I am still living normally, making plans for races and trips and get togethers with friends. All things considered I've got such a super life. What a lovely gift this perspective is.

I hope all of you who read this can feel the depth and the intensity of my love for each of you. There is no expiration date on that.


Saturday's Half Marathon

Wow. What a great day yesterday. It was cold, a little breezy, sunny but not TOO sunny, some tough uphills but some kind and forgiving downhills...all combined to make a fantastic race. Lynne, Cathy, Kendall and I got the most perfect parking place, right by the armory! We all had good races, Lynne ran a good marathon and the rest of us ran a strong half. Kendall PR'd--she showed those hills who was boss!

I was so exhausted by the time I got home. I took C Claire to have her eyebrows done, took a shower and crawled into bed at 4PM! I got up near midnight just to move around a bit but went right back and got up again at 7. I don't remember ever being in bed that long except during bad bouts of the flu...the race really took it out of me. I had nice dreams about rainy beaches...a very restful sleep.

Not a bad way to spend a Saturday.



Better days. The daughter is smiling, so her mother is smiling.

Prepping for the half marathon tomorrow. Busy at work. Listening to good music and podcasts. Feeling happy and content and, while the claw is stiff, it managed to button the (probably too-tight) jeans I wore today.

It's a pretty day and a good life and a wonderful place to be.


And later....

By 11:30 the meltdown had lost much of its energy. Too much to detail except for the final moments. Crying, sobbing in the bathroom she finally yelled out, "Do you know what you're doing, Mom? Do you know what you're doing to me?" I'd gotten into bed but was still awake. I called to her to come lie down next to me and we'd talk it out. When she did, she told me that, on the last day of camp, the Terrific Teens sit around and talk. One of the things they discuss is what makes them cry. She said this year she had something new--my disease. She sobbed some more and I held her close, feeling completely helpless. I am powerless to fix this one. My poor baby, the weight of this is so heavy on her. I would give anything, anything at all, to spare her this.



When you are telling yourself to be happy happy happy and not think about The Disease, you take your smiling daughter to the Best Best Buy because, despite the fact it's further away than the normal Best Buy, she is usually successful finding her CDs there and you love her and want her to be happy because it makes you happy. And you need happy wherever you can find it because you've had a not terribly happy day.

So you go. You wait. She finds an odd obscure little CD but says she wants to keep looking. You agree. You sit in front of the big TV that is obscenely expensive and watch college ball. The clock edges closer and closer to 9PM, when the Best Best Buy closes. Your smiling daughter isn't smiling anymore and you discover she can't find the CD she's been looking for for two years. Reasonable people understand that probably means it won't be found at the Best Best Buy or any Best Buy, at least not in your area.

You suggest it be downloaded from iTunes which is a ridiculous suggestion because it's NOT the real thing and is not loud enough.

The rumbling has begun.

So you take the CD she did find, along with the iPod car player you found, to the register. She begins to lose control and hits your hand as you try to get the money to pay Kerstie, the cashier, who looks on with a stunned expression but manages to be friendly and pretend she's not witnessing a 14 year old having a temper tantrum. Merchandise finally paid for you apologize to Kerstie and leave and very unsmiling and yelling daughter leaves with you, loudly voicing her objections.

Once in the car the screaming begins. The shrieking begins. She pulls your right arm despite the reminder the right arm isn't what it used to be. She kicks. Screams. Flails. No words you speak are acknowledged or listened to. So you remain quiet, and take the long way home. Hoping the longer ride will serve as a distraction.

Some small bit of calm is achieved by the time you reach home but not enough. The screams have become quieter wails, the shrieks are gone but replaced by plaintive cries. She refuses to get out of the car.

She's still in the car.

She's stubborn.

I'm tired. I'd better try to get her in the house.

Why disappointed?

What a day.

Jen and Dan were talking to me today and Jen mentioned she'd heard about the race and how cool and exciting it was the crew was doing this. I'm so grateful for the concern and support of "the kids" but today, today the realization that this race is being held because of my fucking terminal illness weighed heavy on me.

I've been mopey today. Not so much in public (except for the tears after the conversation with Jen and Dan) but here. I hate to say or even think some of what is written here but I have these thoughts and it IS helpful--except I know you are reading this and I don't want you to become frustrated and bored and irritated with the repetitive "oh poor me" I often dump into this place.

Wendy and Mike were telling me at Easter they are taking a retirement class. It made me so jealous.

When I consolidated my various retirement vehicles, I felt quite pleased I'd managed to put away what I considered a fairly decent sum. Art (my $$ guy) said my funds would roughly double in seven years and double again seven years after that (generally that is the way it works). He said I'd be able to be comfortable in my retirement. I was looking so forward to moving to NoVa after C Claire went to college, living close enough to bike to work and run the trails. An "active senior."

But now, with forced retirement looming who knows when, as a disabled NOTHING, dependent on a shrinking retirement account (thanks, George W.) and a housing market that doesn't give me much hope for selling my house at any decent price (a necessity, since I must go to a house that is ONE LEVEL for my anticipated WHEELCHAIR), I feel cheated and robbed and intensely disappointed.

Sigh. This mood will pass. Hopefully sooner rather than later. But Louise will still be here. And the timing sucks.


I'm also disappointed.

Brave? Nope.

Today I was having a nice conversation with John across the hall. He recently returned from a family vacation to Rome and was telling me all about it. I mentioned it was my hope to take the kids overseas this summer while I was still able to walk, and asked if he'd heard about Louise. I presumed he had, since several of his coworkers know. But he hadn't, he expressed his sadness on my behalf, and told me I was very brave.

I don't think of myself as particularly brave. Like I said earlier, everything is still very normal. Those things I can't do any longer I just don't do, and each day that becomes what is normal. I have said this is the hand I've been dealt, I'm just going to play it.

During the heaven conversation I had with Lynne, she said she didn't know how anyone who didn't have faith could face what I'm facing. I don't know that my faith is all that it should be, either.

I know I go back and forth from melancholy and sadness to Pollyanna-ness and pragmatism. When I'm pragmatic, am I brave? I don't think so. I think I'm just ignoring reality!

There really isn't any point to this ramble. I just started thinking about bravery and how I've managed to fool lots of people. Because, Polly and pragmatism notwithstanding, when I go deep inside me I am scared to death and sad beyond measure.


Polly's back

My family and friends will leave in DROVES after reading all my gloom! I don't know what gets into me that I feel compelled to write such drivel.

Despite my melancholia of yesterday, it was a lovely Easter. The whole family was there (except poor little Stella, who was recovering from her attempt at stitch removal). The birds kept us entertained, everyone had plenty to eat and drink, and Harley modeled her new raincoat. I'm waiting for a picture so I can share the loveliness that is Miss Harley!

My right arm is twitching like mad today. The left arm is relatively quiet and there doesn't seem to be any face twitching going on. Thank heaven (or whatever that place is or isn't, hahaha!).

Several of the posts on Living w/ ALS have discussed lithium. The posters have said they're not having any bad reactions to it although none have mentioned any change in progression. Granted, it's a little early, so I don't guess there's yet much to report. I'm looking forward to my next clinic visit so I can get started!

So, back to normal, looking up instead of down, and grateful for all the good things in my life. Apologies again to everyone for the gloom, and I love you all.


Sorry about that previous post. Been a long day.

And I've had lots on my mind.

When we die, where do we go? For most of my life I've believed there is a better place, a heaven, where our perfect selves live forever.

I have always said I am a Christian. Was baptized a Catholic, spent my teen years as a Southern Baptist. At 14 I was "born again" and believed wholeheartedly all I had to do was turn my problems over to Jesus and he'd take care of me. I rejoined the Catholic church when I got married because my husband was a lifelong Catholic and I wanted to raise our children in one church, one faith.

I did raise my kids in the church. Saw them all through to Confirmation. Maintained a liberal 20th and 21st century relationship with my God. I'm not a good Catholic, much too modern for that, but I go to Mass and try to take away lessons from each one. The Catholic church, like the Southern Baptists, tells us we are all working toward that goal, that perfect afterlife, in Heaven.

But in recent months I've had doubts about that and my faith. I know we are all going to die. I know I am going to die sooner than I'd anticipated. What then? Yesterday Lynne said, during our run, that she believed we do go to that better place. Today, during Easter Mass, it was all about Christ's death and resurrection. But is there really a heaven? At one time I believed it without question.

But I question it now. I question God now. I often think this whole God and heaven thing is a bunch of nonsense and that after we die we just stop. Our bodies just cease to function and then are disposed of in whatever manner we've communicated to those to whom we've entrusted those details.

I look around at Mass and try to see us as an outsider would see us. Very cult like, chanting and singing and lining up to take communion--the body of Christ--up, down, standing, kneeling, crossing ourselves...what is this? Are we all deluded? How can this be real?

All these musings have gotten me nowhere, and lead to this ridiculous rambling. Apologies.

Sorry. I'm melancholy tonight.

I know that before I die I am going to be paralyzed. I will be a burden to my family and friends. My relationships will wither and die like the muscles in my hands and arms. The pain of losing these relationships, knowing that it is an inevitability, breaks my heart.

I think about this and it makes me so sad.



This morning was easy...slept in until 8, made some coffee, looked at the paper. I don't get many mornings like this, I'm usually running (no, I am NOT complaining). A morning like this now and again is a treat.

I also spent time this morning paying some bills. This time I had to write three checks--can you believe there are still bills that require actual checks?! Well, there are. My checks are becoming harder and harder to read as it becomes harder and harder to write. I use the fat pen and hold the pen the way that seems to work the best, but my handwriting is so messy. The first few letters are such a struggle and I am so clumsy. I would use my left hand except my left hand likes to write backwards and I don't think my creditors would understand! You and I know it's a sign of genius (she said humbly, haha!) but the Post carrier doesn't care how much of a genius I am--he wants my legible check.

A small success I want to share: I clipped my nail. I had to hold the clipper flat on the table and use my whole hand to push it, but it worked. Admittedly, it slipped several times and was awkward, but it worked. I am blissful in my independence.



Today another part of my face is twitching. I am trying not to pay attention to it but any and all twitching has become suspect.

On a happier note, my order of Pickle Sickles has come in. Now, now, you know you want to try a picklesickle...


The Race

My coworkers are unbelievable. Check this out.

This had been in the works for some weeks and they let me know about it on Monday. I am touched beyond measure. I love them so much.


Item the first:
Yoga last night was tres cool. The instructor told Jenny and me she'd researched ALS and advised me not to do anything where I had to bear weight on my hands and arms. I had decided this several weeks ago! Anyway, class last night seemed to be geared toward legs, core, and stretching. Jenny worked HARD and said she'll not go again without wearing a tank--the short sleeves were too hot! I didn't work quite so hard but enjoyed it nonetheless. It's a special way to spend time with Jen, which is the real reason I go.

Item the second:
Kendall has the racing bug! Prior to the Shamrock Half she declared she wasn't going to do any more races, but yesterday she was perusing the National Half website. She had such a good race in VA Beach it must've changed her mind. I'm all for it! The course isn't flat like Shamrock but she's stronger than she realizes and it'll be fine. A point I meant to make to her: running hills is GREAT for your glutes
Nearing the finish at Shamrock. Go Kendall!!

Item the third:
The twitching in the left arm and hand has become fairly constant. As well, I'm seeing signs that the left hand pinky is thinking rebellious thoughts. And I'm trying not to pay too much attention to the twitching I sometimes feel in my lips. Yes, my lips. For now I'm blaming fatigue--how's that for denial?!

Item the fourth:
The retirement account has taken a big hit. I'm very worried about money.



Brilliantly wise Tom came up with a great suggestion: call our local hospice. I did, and they have a counselor who works with kids; they also have a twice-monthly support group. I think this will be a good starting point for C Claire. The woman on the phone was friendly and helpful and informative. I'm to hear back from the counselor tomorrow.

Everything was fine until she said to make sure I knew I could come to them for my own needs. All of a sudden reality choked me--I managed to say thank you and I'd look forward to hearing from the counselor.

When I got off the phone I couldn't help it, sadness covered me up. I don't HAVE needs, not yet. I can compartmentalize and seek support for C Claire and not look down that road, even though I'm well aware that road is there. The woman's words, meant ever so kindly, were a punch in the stomach. The twitching felt worse, the weakness was more pronounced--the veneer was destroyed and a bright light shined on THE CLAW.

Luckily I got a friendly phone call. I shared what had happened and came close to losing it again, but was able to move past it...I don't want to be a gloomy old thing and bring others down. My friend, supportive and kind and fabulous, called at the right moment. Talk about perfect timing!

So. We'll see what happens tomorrow.


C Claire

I worry about her. Of all the girls, she is the one at home and is the one who is most exposed to what's going on.

She's heard the conversations. She's heard the fights. She's seen the struggles. Each night she runs to the door to help me carry. She opens the water bottles. She opens the envelopes. She bears all the little itty bitty tiny things which, when combined, might be far too heavy for her little shoulders.

Reached out to Tom C to see if he might know someone who knows someone who can see C Claire, talk to her.

I wish I could spare her--and everyone--this stupid ordeal.


A note to the crew

When I say crew, I mean the assembly of delightful, brilliant, fabulous people with whom I spend my days at work.

The road taken to arrive at this place in my life has been full of twists and turns. The bumps in the road were worth it. You are some of the most amazing people I have ever had the good fortune to know.

I'll never be able to thank you enough for the gifts you give.

The Day After

I am sore and tired but feel really great. I have to admit I was very worried about my hand yesterday, after the bike ride, but the stinging sharp pain is gone. Lesson learned: I need about a million layers of cushioning on the handlebars if I'm going to ride my bike for very long.

What was pleasing to me was the strength I still have in my legs. Running a half and then getting right on the bike to go find Lynne is not an everyday activity, but my legs did very well. I calculate I rode about 21 miles after running the half; 21 miles on the bike is equivalent to seven miles of running. So basically I ran 20 miles yesterday. I'm ignoring the twitching that is going on today.

Lynne did well. Overcoming a variety of negatives (wind, concrete, etc.) mid race, she picked it up at mile 18 and finished like a champ. She's such a machine!


This one's for Kendall

We had a super race. 2:25. A fabulous day.

Love you, Kendall. :)


What does THIS mean, I wonder?

More strange dreams. My recollection of last night's is disjointed, but what I do remember is this:

I'm at a lunch counter with lots of people, mostly people I know. I don't have enough money to pay for my sandwich and and am looking for any odd cash when all of a sudden I find my credit card and tell the waitress to put everyone's lunch on my card. The bill is paid and we all leave, but everyone leaves behind odds and ends, which I end up collecting. There are so many things I have a hard time carrying it all until Adam's father, Jeff, comes to my aid. From there we get into a car (the group is smaller now, but Adam's parents are still with me) and we drive up a hill to another store and discuss buying a bottle of wine, which we do not.

Continuing along in the car (now with another friend, Colleen), we drive through a neighborhood where I often run but stop at a huge white house with bright turquoise shutters and doors. Walking along the side of the house I see through the windows a ton of people--adults and children--all busy living life.

Then I find myself in another house, a very small house. There is a repairman there and I ask him to fix the garage. Immediately the garage becomes a room, a sunroom I guess, which I can make larger or smaller with the push of a button. When the button is pushed the floor creaks and moans and the room is transformed. Preferring the smaller room, I push the button and, while the house is being driven down the highway, it decreases in size. I am very worried about the safety of this maneuver but nothing happens. When we stop I discover the driveway has regularly spaced cracks which, when folded or unfolded, cause the room to change size.

More people arrive, young people who are either my friends or my daughters' friends, all dressed in winter caps and coats, they are all smiling and happy and so very kind. We are back at the white house which is still full of people. I go into the back of the house where there is pool (indoors) and I sit by the water, not a stitch on, and worry for a moment people will see me. Another room just beyond the pool is locked but has a window in the door. Inside there is a pedestal with an object, like a smallish, glowing, amber light, sitting on top of it. I'm told the only person who can go into this room is the person with the code. I'm surprised to realize I have the code but I don't go in because I don't have any clothes on and I don't want to be seen.

I feel like there's more but I don't remember.

Anyway, it's Saturday morning. I checked my email and saw the regular message from "Living with ALS." This is a yahoo message board I subscribed to. At first I tried to read everything but became discouraged. I know I need to know about cough and suction machines and wheelchairs and feeding tubes and all the rest but I'm not ready yet. Now I scan the topics and only read what's interesting--which isn't much.

Sun's out, Shamrock road trip is imminent, going to see Becky and John's new house--think it'll be a good weekend. Unless I end up at a house with a pool and don't have any clothes.


Enough Already.

Driving home tonight I caught sight of my hand resting in my lap. The fingers are curled, especially the two non-conformists. Such an awful looking claw. So are you totally BORED with the whole claw thing? I AM. I AM SICK AND TIRED OF THIS. I WANT IT TO GO AWAY SO I CAN TALK ABOUT OTHER THINGS.

  • The Shamrock half marathon is Sunday. Kendall is recovering from the flu so we tried a new ratio this morning: 5:2. What is noteworthy is that we covered the same distance in about the same time as when we do 8:1. I think Kendall will have a good race and I am looking forward to cheering Lynne on as she completes her 27th marathon. No, no envy, at least not today. We'll see how I feel Sunday. Anyway, the 5:2 run this morning was delightful. I was disappointed to get back to the office.
  • Matt sent me a great link today. If you have time (approx 20 minutes) it's worth a look.
  • Can't go to Becky's game (homework) but the Terps (sans the "w" for now) are playing so I will watch. Hope they don't screw it up.
I think these are much more interesting topics.


PB and Pickle

Don't gag. Peanut butter and pickle sandwiches are manna from heaven and one of my favorite treats. I'm eating one now and loving it! Tomorrow morning's run will burn most of it off--I hope!

I had to do this post separately from the one just before because one simply cannot talk about one's mother and peanut butter and pickles in the same breath. Haha! As contemplative and serious as was my previous entry, this one is less so.

I was able to UNzip my skirt tonight. C Claire is happy and chatty and sweet as can be. Jenny and the Fluff are doing well. Becky's volleyball team is #1 and we are going to the game tomorrow.

I am very happy. It was a beautiful day and evening.

Much, much love to all.


Today I was talking to my sister about last Easter (the Easter of the SPEW) and we talked about our mother. It's been 12 years--12! I told Wendy that this morning I'd seen Mom, as I always do, in the mirror. After Mom died I had several dreams that she was with me, but I only saw her in the mirror. Always the mirror. At a hotel in a third-world resort, in the rearview of a nearby car, it didn't matter where, it was always a mirror. I know this for what it is: my own face resembles my mother's and there are times her features are clearly evident, whether it's the set of my mouth or the tilt of my head or the look in my eye.

Most of you know my mother died after the liver she'd received in a transplant developed cancer. Mom had a choice: take the drug that kept her liver from being rejected but which would permit the cancer to grow; or stop the drug, cease the cancer's growth, and allow the liver to fail. Her choice was the latter, the least painful.

My mother endured much in her life. Her death was quiet and befitted a woman of her strength. I wonder if she knows what's happening and is sending me some of that strength when she shows up in my mirror.

Normal, except...

Everything is so normal. It's so NORMAL. Getting up, getting ready for work, eating breakfast, talking to Mike (who has the 6-2 shift this week)....except this morning I couldn't turn on my bedside lamp, and Kendall had to zip my skirt for me.

Everything is normal except for those things.



Lunchtime and a moment of reflection.

As I sit here, just off the phone doing oh-so-important work for the company and our employees, I can't imagine not doing this and the other things I love so much. My life is really so incredible; I love and am loved, the cold air feels good on my face when I run, my egg drop soup (right now) and food (in general!!) tastes so good, I'm listening to BBC podcasts. This is just a short list of things that make me appreciate where I am in this life.

Then my fingers start their stupid dance and my arms (yes, armS) twitch and twitch and twitch, and I recall I am not left handed no matter how I am eating my soup, and I remember Louise is not far away. As I've said before, I have a very hard time reconciling who I am with what Louise portends.

So I ignore her as much as I can. Stupid bitch.

Where I'd like to be right now....

Loving my Monday

When the alarm went off this morning at 4:15 and my body revolted, thinking it was 3:15, I decided to stay in bed another 30 minutes. Excellent decision. I had a good workout at the gym and then two HUGE successes: I buttoned the left sleeve of my blouse AND I managed to squeeze into some pantyhose.

Starting off to be a super wonderful day!

I've also given some thoughts to yesterday's dream. The pointy toed skates are obviously mine because I am the pointy toed shoe queen. Skating=rolling=ease of movement, agility, freedom. Dave L and Kevin represent the running (Dave) and my youth (Kevin). Still working on the table and what THAT means! Maybe it's representative of a plateau? Who knows. I welcome any and all interpretations.

And, finally, more reasons Sunday was a good day: Lynne, Thull, Jennifer, Jannette and several other friends placed in the race!


Blahg, blahg, blahg.

Blog, blog, blog. What a blogger I've become. Even the most trivial, mundane events in my life must now be recorded. I've never journaled before....well, not since Nancy Brown and I tried to be Harriet the Spy in 5th grade (and we got in BIG trouble for that). proceed.

I had another odd dream last night. I was at work, manning the door lock from my desk. The guy over at IJ across the hall asked if I would manage their buzzer too since they'd all be out of the office. I agreed. Their side of the building, having never been explored, was tempting so I walked over and found myself at the top of a staircase. I went down, but very carefully as the stairs were irregular and very sketchy. Several times I was unsure of my footing. Reaching the bottom, I found myself at the entrance to a long corridor. It was HORRIBLE, with rats running all around, and it smelled bad. I turned and went back up the stairs, again VERY carefully since climbing was difficult with the bad staircase. I reached the elevator lobby separating TIS from IJ and a friend, Dave L, was roller skating around in very pointy toed roller skates. He was very agile and competent on the skates and was able to roll underneath a nearby table. Dave turned into an old friend from high school (Kevin, they are alike in their features). That's all I remember.

Any thoughts as to what it all means? I'm thinking the stairs may represent the you-know-what. The rest of it I don't understand and I honestly haven't spent much time thinking about it.

To continue: I had a fabulous visit with Ken and JR. They are such good friends and I love them so much. They shared their books on Rome and Italy with me to help plan my European Adventure with the girls.

Beyond that, it's been a quiet, happy day. The pedi looks lovely if I do say so myself and I am ready to wiggle my toes in public.

As close as I was to unhappy yesterday, I am commensurately happy today. How nice to be able to enjoy the little treasures we are given each day.

What makes this a good Sunday

  1. UNC beat Duke.
  2. The sun is out and it's cold.
  3. Ran the 8K this morning in under 50 minutes.
  4. Didn't have to run after the race!
  5. Ate a delicious bagel.
  6. Am getting a pedicure.
  7. Am visiting Kenny and JR.

And it's only 10:30. Imagine all the other good things that will happen today!


Beer and Cake and UNC and Duke

Just back from Lynne's big do at her home. Considering I had the house to myself, it is a real testament to our friendship that I would go out under these circumstances! But she is such a great friend and her family is so welcoming and friendly I couldn't help myself. In fact, after the afternoon I had, it was very helpful.

My afternoon wasn't bad--but it bordered on depressing. I came home from my run (which was excellent, by the way) and was determined to get some things done that I'd been putting off. The family headed to Richmond and I settled in to balance my checkbook, look through some papers, etc. Some of the papers I had to go through were medical bills....I've racked up so much already in 2008. (Thank goodness for our health insurance. I don't know what people do who don't have it.) My hands were cold and, consequently, my right hand was even more clumsy than usual. The fingers spasm so much. They hit keys when I don't mean them to, they don't hit keys when I do. I'm constantly backspacing to make corrections.

I had added some links to this blog and decided to look for some others having to do with ALS. Big mistake. The two I added today (Arms and Legs) are gentle--some others I looked at were not. I may add them at some point but they are too much now. Maybe not too much for my dear readers, but too much for me. It was like going to the support group last month--a glaring preview of what's to come.

The hour having come to go to Lynne's, I decided enough was enough. I left, but the images I'd seen and the clumsiness of my cold right hand remained and I was feeling not quite my usual perky self. What was worse, I couldn't turn the key in the car. I tried a couple times but ended up having to use my left hand. Tears of frustration welled up in my eyes and for a moment I was full into the beginnings of a pity party.

Times like this I want so much to cry and have someone to talk to but I am very reluctant to burden anyone with this gloom. Everyone has their normal, happy lives and to look at this is ugly and unhappy. We are all so helpless against this stupid disease, it's not fair of me to throw this in people's faces.

I drove to Lynne's and listened to Amy Winehouse as loud as I could. Pushed the images out of my head. Put a glove on my right hand. By the time I got to Lynne's I was almost back to perky. Her son Josh met me in the driveway and offered to carry in my contribution of beer and cake (how's that for a combination?) and, because he's such a sweet kid and rather a favorite of mine, my mood lifted. Entered the house and got a nice hug from newly coiffed Miss SJ. The smile on my face was genuine--here was a good distraction! Lots of kids and friends and food and, of course, beer. The perfect balm.

And now, UNC is playing Duke. Time to go yell at the TV.


I closed my eyes tonight, during a peaceful moment. I was right on the edge of sleep and gave into the drowsiness.

I dreamt I jumped into a pool and went all the way down to the bottom, planting myself somehow. Inhaling deeply my lungs filled with water.

As I came out of this little doze, I tried to imagine how it would feel to breathe in water. I couldn't, really. But it scared me to think of it. I didn't feel so peaceful after I was fully awake.

A Poem For Mom

I really haven't written much since I studied literature in college, but last night at yoga, mom and I experienced a nice little moment of eye contact. Wouldn't you know it inspired the living daylights outta me! This one's for you, Mama, wrote it with throbbing arms while sitting on my throbbing behind after class :)

*Teehee* notice the enjambment (word of the day)

She stretches,
holds a pose.
Daughter breathing
loudly beside her...
She goes as far as she can.
Her muscles are not
as they once were.
Body heat rises
as the music
and the breathing continue.
Filling all the body,
pushed out and sent
to where it will be used best.
They make blurry eye contact
in deep relaxation
and the moisture beneath
the eye comes from the heart.


Mid 30's this morning--perfect for a run. I was tired but had promised myself I would do the 6.5 mile course this AM. Several times I almost talked myself out of it, or told myself I would shave off part or take the shorter route but, ultimately, I ran the whole course. What a gift--my breathing was strong, my pace was good, the hills weren't any fun but I didn't walk a single one. It was one of the best runs I've had in weeks.

And I ran the course in 61 minutes. Under a 10 minute pace. One of my dear friends, after being told this, laughed out loud. Reminded me of my assertion that I wasn't going to worry about time anymore...okay, guilty! I guess there's still some of that old competitiveness still flowing. Ha!

One thing I need to remember is that, diagnosis notwithstanding, I am a runner. It's not just what I do, it's who I am. I can't give in to the dark thoughts that pop up when I look down the road. It's all about now. Now is FABULOUS!


First, Germany

Oh, TYMD. Bought the tickets to Germany and have started the ball rolling. Hoping to tour German castles; want to visit Rome and the Vatican; MUST stop in Paris for dinner at my favorite restaurant; then possibly Strasbourg on the way back to Frankfurt. What an adventure we're going to have!

Becky's been buying dresses. Jenny says she wants a pre-trip pedi (so do I)! Cecilia gave me a sweet smile when I told her the plans were starting to take shape.

Deepest gratitude to my generous anonymous benefactor.



Today I acknowledge more weakness in my right hand. I can't touch my thumb to my pinky as I used to; this used to be my benchmark. When I try my thumb cramps for a long time, it's even a bit painful.

My right wrist is very thin, to the point where my fingers meet and then some when I circle the wrist.

My ring finger is separating from the others more than before.

I stood at the elevator today on my way to some little task and thought how nice it was to be busy, to be distracted...when I was hit with a gigantic, sad truth. Despite the distractions, the disease is encroaching. I'm trying so hard to smile in the face of it but today I had a tough time. I broke my rule and looked forward, down the road. I wish I hadn't. Denial is a much better state of existence.

April and the next clinic visit are only 5 or 6 weeks away. Please oh please let the lithium prove beneficial. I'm not ready for this.

A note to my loved ones who read this: I apologize. I'm trying very hard not to drag you down into this place. The enormity of what is happening is overwhelming to me sometimes, it scares me so much. I'm sorry you are going through it, too.

Time to run. Thank God.

Eight Minutes

I think it's time I admit defeat. This morning it took me eight minutes to put on my stupid pantyhose. That doesn't include the time spent with the previous pair, only to discover a run.

By the time I was done I was sweating. I certainly earned the bagel I had for breakfast.


Sunday visitors

Little Miss Stella with mama Jen.

Happy Harley the pillow with Becky.

More of the fashion queen Miss Stella with the other fashion queen C Claire.

Worth a smile or two, yes? Yes.

Enlightenment of the Day

I chatted tonight with a friend from one of my old jobs. He calls every now and again to see how things are going with the new job, and to gossip about the people from the old job! He, like most people I know, is aware of my dumb diagnosis.

What I find interesting is how many of my friends will inquire about how things are going, but when I tell them they don't seem to be listening. I'll get a pat response like "well, we all do what we can," or "hang in there, it'll get better," or "it'll be fine." Maybe they do listen but they don't know what to say, perhaps they don't understand that it likely won't get better; that it isn't fine. I don't fault them for not knowing what to say or for their lack of understanding but these vague and inattentive responses leave me feeling sort of frustrated. I mostly feel like they ask to be polite but aren't particularly interested in the answer. That's okay, too, but I wish they just wouldn't ask. It's like being blown off...if that makes any sense.

It makes me wonder how many times I've been on the other end of a conversation and have behaved similarly. It shames me to think I might have unintentionally hurt anyone's feelings with a casual attitude or inability to say the right thing. Perhaps I'm being given an opportunity to improve in that regard.



Don't you love that word? I can't take any credit for it, the credit goes to Loretta the Psychic who gave me a reading while I was in Baltimore this weekend. Apparently I am full of confuzement.

When I got home today I was greeted with some sad news. Shadow died yesterday, apparently at the hands of a stray dog. In our driveway. The tears are hovering in my throat, making it ache. I hate that he died in a way that wasn't calm and peaceful.

Cecilia said she cried hard--not surprising since she "connects" with animals in a way she doesn't with people.

Oh my poor little sweet cat.

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