THE ODDS (Debbie Does ALS)


The space.

Well, I did it. I was weak, I took the easy way. Heaps of bad karma will surely be visited on my head.

As I searched for a space near the restaurant where I and Cecilia were meeting Becky, John, Lynne, Melanie , and Tina, I became frustrated with the crowded lot and the ticking clock (I was already more than 25 minutes late). I turned into another row and there it was, calling, beckoning...I didn't think twice, I gave in.

Four and a half hours later I finally pulled into the hotel parking lot at the beach. I honestly tried to avoid a repeat of my earlier transgression but I had no choice! There was nothing else available--I was forced to give in, again.

Cecilia reminds me I am legitimately eligible, that I am doing nothing wrong. But it feels not right, like I crossed a line.

Will I do it again? Probably. But only as a last resort.


Untangling with a glass of Noche

My adversary was a no-show; I worried and tangled myself for nothing.

When I was called (the last case of the day, naturally), the judge greeted me, then asked if I'd seen Ms. or Mr. Defendant, to which I replied I hadn't seen them for MONTHS. I took my oath, stated my case, presented my evidence and won. Just like that.

They have ten days to appeal (not pay, as I thought I heard the clerk say) and, if they don't, I begin to pursue the money. I don't know how complicated this is, so I may seek some legal advice here.

I am soooooooooooo glad this piece is done.

Super-duper never-ending thanks to Mel. Thank you thank you thank you.

It's today

My stomach is tied up in a tangle of unnecessary worry. I just want this next chapter to be done; I want to find another attorney; I want it over.

Deep breaths. More deep breaths. At this rate I will pass out when called. Thank goodness Mel will be there to hold me up.


Me again

Almost forgot.

One of the women I know in the running club -- not a friend, exactly, more of an acquaintance -- recently lost her father. He had had throat cancer (and pharyngeal surgery), then had a stroke which left him unable to walk or use his hands or speak. He had had a feeding tube inserted but decided to forgo any nourishment. A psychiatrist met with him and concluded he was mentally competent to make this decision. According to this woman, her father did not want to be a burden or an inconvenience to his family so chose to die.

I don't know why it bothers me that he made this decision. I totally agree with the logic, I just feel it happened too fast. Maybe because his disability was thrust upon him practically overnight; he didn't have time to digest (no pun intended) and adapt to his "new normal." I don't know.

Anyway. I can't imagine doing that myself, at least the person I am today can't imagine that.


I am sitting in my lovely serenity room. My fresh manicure is pink and fabulous, the house is quiet, and it's a beautiful day. I love days like this.

The Hartwood 10 mile race was this morning; all the usual suspects were there. The race started at 7 AM in an effort to beat the heat, a wise move on the part of the race director. When Lynne rolled in sometime after 8:30 AM it was still pleasant, particularly when compared to years past.

Last year I ran this race. It was hot and hilly and I was hating life. I had run a half marathon the day before; also hot and hilly. The half and the 10 miler were tough on my body and on my spirit -- my finish times evidenced how Louise was affecting my running. I know, I still did 23 miles in one weekend, but I got spanked.

I had mixed emotions when my friends crossed the start line, I think I always will, but my perspective has improved and I am grateful to be able to act as mascot and cheerleader. In fact, that's what my friends are now calling me and it pleases me greatly.

While my friends were running I used the time to straighten up my car. I tossed old church bulletins, empty water bottles, the McDonald's bag from this morning's breakfast, as well as a few errant bottle caps from some long-ago consumed Magic Hat. Ah, good old Magic Hat!

I also ran across a picture taken by Tam at the Richmond Marathon in 2007. Lynne, Cathy, and I are all together -- I think near the halfway point -- and it looks like we are having the time of our lives. There is a big smile on Cathy's face; Lynn is goofing around with her hands; I am blowing a kiss to the camera. We all look strong and happy and like we are loving life.

The Richmond Marathon was held only weeks after my diagnosis. I was strong and happy and loving life, more so at the end of the race because I ran such a good time. I'm glad I found this picture because it reminds me of a very happy time, despite what I had just learned. I'm going to keep it close at hand.

Imagine me now blowing a kiss to all of you!



She's at it again, my dear Cecilia.

Did I ever share the story of what she said during my cleaning-the-counter temper tantrum? I was furiously (temper-wise, not speed-wise) wiping crumbs off the kitchen counter and growling about how I couldn't live with the mess, and maybe I should go live somewhere else. (Oh yes, I am a joy to be around.) Cecilia, upset by my childish behavior, said "Mom, you have ALS and it's a bad economy. You have nowhere to go." She stopped me in my tracks, and I immediately saw what an idiot I was being.

She truly keeps me grounded, and in stitches.

As some of you know, I am having serious self image issues. The lack of running, combined with enjoyment of food and the ravages of age, makes me feel ungainly, flabby, and very land m-assy. My darling Cecilia was helping me take off my shirt last night; I warned her to be prepared for the unsightly flesh she was about to uncover. She said in her very matter-of-fact way, "Why don't you like your body, Mom? It still works."

More grounding. These nuggets of wisdom are delivered by one who cuts right to the chase. She does not permit me to wallow, that's for sure. I am so blessed to have this delightful young woman in my life.


Le Joque

I heard a great joke yesterday, and I must share. What is below is a classier version of what I heard, but the result is the same:

Rene Descartes went into his favorite bar and the bar tender asked, "would you like your usual drink, Monsieur Descartes
? "

Descartes replied "I think not" and promptly disappeared.

Isn't that a hoot? I thought so, but I don't think many of my acquaintances were as amused. It must've been my delivery.

Happy Thursday to all.


One more thing

My job. It is the best thing in the world for me right now.

Do not misunderstand, the people in my life are infinitely more important, but my job distracts and energizes and rewards. I think my job contributes to the slow progression because I am so busy. And there are some truly fine people in my midst. It really is a great last job.

What will the rest of the week bring?

Today is Wednesday. It's been a hell of a week already.

I'm supposed to go to court on Monday, the rescheduled date from the original date in June. You may remember the defendant did not show up in June, saying he was out of town, so we had to postpone. Upon leaving the courtroom that day, I called a lawyer who had been referred to me by Lynne. We met, he agreed to take the case, all was right with the world.

There were some e-mail exchanges and phone calls, but nothing unusual. The 24th was on the calendar and everything was proceeding uneventfully.

Yesterday, Tuesday, I thought I would check in just to make sure we were still all set for Monday's big event. I was greeted with some very unhappy news: my attorney had died two days before.

What the fuck.

I expressed my condolences to my attorney's assistant -- sincere apologies, since I have been in her position and know how painful and devastating this is -- then, apologizing for any appearance of insensitivity, asked what I was supposed to do next. She promised to call me the next day.

That would be today. She called with her recommendation. Because of the timing there is a chance that any request for a continuance might not be received and processed in time, so I will head to court by myself and will ask for a continuance when I am called.

I'm a little nervous about this because I do not trust that things will work for me. Thank goodness for my dear friend, Mel -- she has offered to come with me if she's in town. I suspect this offer will be all the catalyst that is required for her trip to be scheduled on Sunday, but I am keeping the faith. Either way, it will be the way it is meant to be and I will dig deep and see it through.

I'm just so tired of this entire situation and want it to be done.

On another note, today has been a very twitchy day. I don't mention the twitching as often as I used to but that does not mean the twitching has stopped. Quite the contrary, I am still the twitching fool I have been these last two years. For the most part I disregard it. But days like today make me batshit crazy.

I feel as though I have been twitching from my nose down my face into my chest and stomach, across my arms, around the walrass, down the back of my legs to my calves. My forearms and biceps twitch so much that sometimes my arms jump.

I'm tired of all this, too. But, it is what it is meant to be, and I must deal with each twitch with grace and dignity. Grace and Dignity have their work cut out for them dealing with stupid Louise.


The list, part one

No, I have not showered yet. I keep thinking of things.

I'm going to make a list of things that are good about ALS.
  1. Fingernails. When one does not use one's hands for very much, one's fingernails began to grow. When I was younger I always wished for pretty nails. Be careful what you wish for.
  2. Perspective. While I think I have always been a fairly positive person, and have had a good appreciation for the everyday gifts we are all given, I believe I am more positive and more appreciative now. A ticking clock -- no matter how slowly it ticks -- makes a big difference.
  3. PALS. I've met some incredible people. Courage, beauty, wit; these are some of the words that describe my comrades in ALS arms.
  4. Weight. I now have a decent excuse for being heavy. As Dr. Kwan says, "fat is good for ALS."
  5. Weight again. At some point I expect eating to become difficult. At this point I may begin to lose weight. I have always wished to be a smaller girl than I am, and this may be how I achieve that goal. Again, be careful what you wish for.
That's all my tired little brain can come up with right now. I suppose I had better mosey on over and take my shower before I become an offensive mound of beached whale dirt.

Smile worthy

During my walk this morning, I noticed something that made me smile.

Near the swingset at the park is a huge mound of dirt, about 2 feet high and 4-5 feet wide. It may be bigger, but I am piss poor at guessing measurements. No matter, it's big. Anyway, it looks rather like a large creature -- perhaps a walrus or a whale -- just sitting in the park; beached, as it were.

It occurred to me that I, in my tan clothing on Friday, must have looked much like this mound of beached whale dirt when I lost my balance. I can only imagine what my horrified coworkers must have thought. It makes me laugh to imagine.

Like molasses

Came home from my walk this morning (2.2 unexceptional and slow miles). Looked at the clock and was happy to see I had time for a quick bowl of cereal before the "no food" zone (two hours before, one hour after, as dictated by the side of my Rilutek bottle). Ha ha, I said quick. There is no such thing as a quick bowl of cereal or a quick shower or a quick anything anymore.

To wit:

Raising my arm and hand to cupboard level: slow and a little painful.
Opening the cupboard door: Still doable, but requires patience and some finesse; i.e., one must place one's fingers at the exact right place on the corner of the cupboard and hope there is enough strength to pull the door open.
Retrieving the cereal: Another reach, left hand/arm only, some pain. Can't use fingers to grasp the box so another move is required, sort of sliding the box toward me. Two hands are needed to get the box out of the cupboard, one on each side.
Opening the box: Fairly simple IF THE BOX HAS ALREADY BEEN OPENED. If not, the quest is abandoned.
Pouring: Having made sure the inner packaging is open, the box is then secured against one's right side, held in place with the arm and elbow. The left-hand guides the cereal from box to bowl.
Restoring the box to the cupboard: Not overly difficult, except for the reaching up.

Fortunately, getting the milk from the refrigerator and pouring it on the cereal are not yet troublesome tasks. Getting the right sized spoon is slightly troublesome as it requires the use of fingers.

Eating, as has been noted before, is completely a left-handed function these days. Using a nice large spoon enables one to have a fairly pleasant cereal eating experience.

So, as you can see, even making oneself a bowl of cereal can be a tedious, not very quick process. It's like that with dressing, makeup, even getting myself situated in my car prior to driving. Everything just takes so damn long and is such an effort. You would laugh you could see me putting on my socks and shoes before I go for a walk. Those hooky things I've shown you before are truly lifesavers. I don't use them for pants any longer, but they are fabulous for pulling up socks and putting on running shoes. If I can convince Cecilia to take a picture, I'll show you how wonderful they are.

Okay, breakfast is over and it's time for a quick shower. Ha ha, I crack myself up!


A fine Saturday morning

The hard part about walking/running by myself is that I do not have to wake up at a certain time because I am not going to meet anyone.

Let's flip that around.

The nice thing about walking/running by myself is that I do not have to wake up at a certain time because I am not going to meet anyone.
This morning I woke up at 5:15 AM, looked at the clock, and told myself I still had time. At 5:45 AM, I told myself "10 more minutes." At 6:50 AM, I finally got out of bed. The extra sleep was a gift.

I made it to Pratt Park by 7:15 AM determined to wog six laps -- hoping for a high run to walk ratio. I dutifully walked the first 10 or so minutes then tried to run, but my legs felt heavy and stiff and my hip was still unhappy from yesterday's episode. Unfazed, I continued along my way, adjusting my expectations. I would not run around in circles six times; I would walk around in circles six times.

As I was nearing the end of the third lap (and running just a little) I noticed another runner coming my way, a runner whose gait, attire, and hair style I recognized. It was none other than dear Lynne, out for her own run and who had decided to make a detour in the park. It made my day.

We walked and talked and just after I began my sixth lap, she headed off to the trail back to her car. I finished my loop with a little tiny run just near the end. All things considered, it was quite a fine morning.


Not exactly a fall, but...

My right hip abductor still hurts from cramping. What is more bothersome is the tumble itself.

Maybe tumble isn't the right word. I was distributing parking passes and access keys to a couple of employees who are moving into our suite next month. I started to turn to my right (from a standing position). As I was turning, I could feel my balance turning into imbalance or unbalance or off-balance -- however you term it, I was losing my balance. As if in slow motion I saw myself falling backwards as I was doing it. Luckily, the walrass is large and absorbed some of the shock. So there I was, on my back behind my desk, all the while being watched by my coworkers. Bless Suzanne's heart; she tried to help me up, as did Sara from the other side. Louise would have none of that. It was best for me to try to roll onto my knees, which I tried to do several times. The first time my right hip cramped so badly I couldn't move. I rested for a moment until the spasm passed, then slowly, and using my left elbow and shoulder, managed to roll onto my knees. Finally I was able to get up.

The last several days I've been feeling pretty positive that I'm still doing so well considering I am 22 months post diagnosis. Episodes like this, however, shake me up a little bit.




New thermostat installed last fall. Requires batteries. Batteries die, no air.

Easy fix.


Don't say it

Never, ever tempt the gods. When you are in good traffic, say nothing or the evil traffic gods will ruin your ride. When you are pleased with your contractor and the work he does, say nothing or he will leave you without finishing. When you are enjoying your blessedly cool house and the seeming efficiency of your new windows, say nothing or you are sure to come home to a house with lovely windows -- but an air conditioner that has chosen to go on the fritz on the hottest day of the summer.


Cool stuff

60 Minutes - Brain Power 8/9

A gift

Yesterday, Jennifer came over just after I finished my shower. I was just getting ready to apply my moisturizer, and I asked Jenny if she would do the honors. I can't even describe how wonderful it felt to have strong, unbent fingers against my cheeks, my forehead, and my chin. I don't remember the last time my face was so happy.

Thank you, my darling daughter.


One-fifth of a 50K

I've not been able to get out to walk much lately and so I determined to this morning. To beat the heat, I planned on being at the park by 630AM. The blueberry lagers from the day before, however, didn't want to start until 7. I acquiesced.

It was my intention to do six laps (6.6 miles) at a brisk pace. After the first quarter lap I decided to pick it up a little, so I ran. I ran quite a bit. I walked when it was uphillish or when I was facing the sun, but I ran more than I walked. After I'd completed the fifth lap I started feeling fatigued, so I took the pace down and did a bit more walking. The running, however, still won out.

It was definitely the best 6.6 miles I've done in ages.


Remember these girls? They look strong, right? Well, they are.

Yesterday these ladies faced a tough trail and one of this summer's hottest days and ran a 50K race.

The race started at 6:30 AM. There was some cloud cover (always a good thing) and even a little sprinkle, but it didn't stay that way. During the seven hours plus Lynne and Tam were out, the sun would occasionally peek out and, if there was no shade, would make it dreadfully hot. Cathy and I, after having a delightfully nutritious breakfast at the FasMart, made our way to the first crew station. Our runners came through right on schedule despite Tam having taken a tumble at mile two. She told me later it made her fear falling but, strong runner that she is, she moved past it and continued on. We met up again at the aid station at mile 16 and they still looked as fresh as daisies! The next stop was the turnaround at mile 20 -- they emerged from the protective cover of trees into a hot, brightly lit clearing. Finding some shade, they refueled, turned around, and headed back for the last 11 miles. Cathy and I hurried to the 24 mile mark, saw them again, then made our way to mile 26. Seeing them through this point, we headed to the finish. When they came out of the woods for the final time, and made their way across the field looking as beautiful as when they'd started, we all cheered. These are women I have long admired. The strength and determination they exhibited yesterday only added to the admiration.

Two items of note: First, it was somewhat difficult being at this race; as excited and enthusiastic as I was for my friends, there was a pang of sadness that I wasn't running it, too. Granted, I would never have run a distance race in August, but I really always wanted to run a 50K race. Anyway. I did not dwell on what I was not doing, instead I focused on being super cheerleader.

Second, though Cathy did not run the race she deserves a medal. Why? Because she had to face something more horrifying than a tough trail or a hot day, she faced the walrass.

My first trip to the restroom, at the FasMart, was uneventful. The second time I had to go, I tried to do so discreetly in the woods. The word unsuccessful does not even begin to describe how abysmal this attempt was. I tried the old "tying my shoe" pose but realized after mere NANOseconds that this wasn't going to work. I ceased any forward progress at this point, but then faced the daunting task of trying to stand. I was beginning to worry that I would be forever left in the woods in my kneeling position when finally I lurched forward at the proper angle and was able to get up. I stumbled out, my left leg scratched from the brambles, still needing to "go." The next opportunity wasn't until we had arrived at the turnaround point at mile 20, where there was a gloriously beautiful port-a-john. At mile 26, however, there were no facilities and I knew I was going to have difficulty. The warmer it became, the warmer I became, and the sweatier I got. When my skin is damp it is almost impossible to pull shorts or pants up over my hips and butt. I swallowed my pride and asked Cathy for help. She was wonderfully efficient in both the down-pulling and up-pulling processes, and didn't bat an eye at the large moon which shone brightly. By the end of the day my arms were tired enough (and I'd had a couple blueberry lagers) to warrant two additional requests, which were answered unflinchingly.

Lynne and Tam ran a tough race, and Cathy really went the distance.

They are forces to be reckoned with.


Please Become a Muscle

Please join me on October 24th for the 2009 Walk to Defeat ALS. You know how important it is we do all we can to fight this stupid disease. With your help, maybe, just maybe, we'll get a little closer to finding a way to a cure.

I am so lucky, 22 months post-diagnosis, to be as functional as I am. I am luckier still to have you--my muscles--helping me fight this fight.

Thank you so, so much.




The perfect candy. Even more perfect now as it takes so long to unwrap (even using my teeth) that I don't eat as many as I would like. How's that for a positive effect?


For your enjoyment

This is a gem of a book. Doesn't take long to read and is charmingly witty. I highly recommend.


Listening to the sounds of one's own sobbing does two things: it begets more sobs and it makes one painfully self-conscious of one's own stupidity.

But it is also a release. Once finished, I was exhausted and fell into a little sleep. I'm still a little weepy. But it is under control.

Today's trigger: next week's 50k race. I won't be doing it, or any other race. Lynne and I talked about the course and about the time we'd run the trail, some years ago, and I remembered being strong and enthusiastic. This discussion took place this morning during a walk at the Spotsy battlefield..where I had to rest before ascending a couple of hills.

Mindset is back on track. There are a ton of things I won't ever do, or do again, but at least I can take comfort knowing I've done much. I doubt if I'll ever not yearn for things: running, travel, being able to butter my own bread...but stupid sobbing won't fix that, will it?

Microphone off

Today is one of those days.

My mind is full of thoughts -- sad, rueful thoughts -- and the unhappiness is sitting heavy within. I'm daydreaming of things that will not be, cannot be, and I am filled with such pain. I can barely dictate this because the tears are close and would render me unintelligible.

I need to find a distraction, something to help me push this terribleness away. The problem is I would have to use my hands, which causes frustration and sadness.

The tears have started. I'm not very strong today.


Tuesday plus

I am enjoying a nice, quiet Saturday afternoon; it's a bit overcast, the bird is tweeting in the bedroom, Stella is waiting patiently for Mama to come home from the beach, I have the house to myself. I've been waiting for this time all week long.

After Tracy's visit I had intended for Tuesday to be a quiet day and evening. When Cecilia told me there was a concert at the 930 Club and that she had a friend who could go with her, what could I do but say yes. She does so much, and this was an opportunity for her to be with her friend. I went to work at my regular time that morning. John brought Cecilia and Ashley to my office just before 4 PM, and we left not long after. The 930 Club -- which used to be at 930 F Street -- is located on V Street, near Howard University. An earlier phone call informed me that there was a "quiet room" for the parents, which turned out to be a downstairs bar that was not necessarily quiet, but reasonable. After standing in line in the sun for about an hour (thank heavens I had changed into a T-shirt and shorts) we were finally admitted. The girls headed for the concert area and I made a beeline for the downstairs bar. After all that sun and sweat, I had earned a nice cold beer!

(A note about the T-shirt and shorts: I was wearing a "Race for McGee" T-shirt and an old pair of JMU gym shorts. The gym shorts look better when they are rolled up couple of times; I was only able to roll properly on the left side, so the shorts were hanging lower on the right than on the left. The shirt was large and, after some time, sweat stained. I had on black flip-flops, which showed my two week old pedicure. I had forgotten to take off my fancy earrings, which looked out of place with my very casual, lopsided, sweaty attire. I was not concerned about my appearance because, as I said to myself, I've wouldn't know anybody anyway.)

Another parent was already there, a man wearing a Maryland T-shirt. I recognized him as someone who had been in line just ahead of us so I said hello. Naturally, I had to inquire if he had, in fact, gone to Maryland -- he had, so we talked a little bit of basketball while I drank my first beer (notice the word "first"). During the conversation, I noticed he had several plastic bracelets around his wrist, including one that was red, so (nosy old thing that I am) I asked what they were for. He said he had lost a sister to cancer, and the bracelets were all related to that. I apologized for being nosy, but he was okay. We conversed about work, about where we had grown up, about our kids, the normal stuff you talk to strangers about. Another woman seated nearby joined in. The conversation turned to running and I learned the man (Neal) was a runner and had done quite a number of marathons. We compared races and he told me he was training for Marine Corps. I had mentioned to Neal and Debbie (our other new friend) that I had ALS earlier in the conversation, and now the conversation turned to my new style of running and how I missed training and running long distances. We didn't dwell on this topic, we turned to other things; very general, very easy.

About this time in walked another mother. She came close to our table, stopped, looked intently at me, and I realized I knew her. In fact, I knew her 30 years ago, we were even bridesmaids in the same wedding. She joined us, so now we were four. The woman sitting next to Debbie also joined us, bringing our number to five. We were forming quite a party!

Beer number two had been consumed by this time, so I was working on a bottle of water. We all decided to order some food -- I had a hot dog, which demanded I get beer number three. Everyone was talking with everyone else; Diane and I were reminiscing and she was filling me in on what was happening with other mutual friends. Neal and I talked more about running, about the place you go when you are running, about the way it changes your life. I gave him my business card and told him to e-mail me; it was my intention to tell him of some really great marathons to run. Diane and I exchanged e-mails so we could arrange to meet for lunch one day.

Three beers being my limit for the evening (almost 5 hours and with food), I grabbed another bottle of water and settled my bill. Knowing that the evening was coming to a close, the conversations began to taper off. The arrival of Diane's daughter was our cue that the concert was over. We all got up and headed toward the staircase to the exit. Promises to e-mail were made -- but barroom promises are rarely kept and I had no expectation of hearing from anyone.

I found Cecilia and Ashley and we made our way home. You know from my earlier post that I did not crawl into bed that night (actually, morning) until 1230. It was a long night, but it really turned out pretty nicely. Despite what I was wearing!

As it happens, those barroom promises were actually kept: Neal e-mailed me and we have exchanged supportive runner-isms, Diane wrote to suggest lunch in the near future. I received a surprise e-mail just a few minutes ago, I think because I had given Diane my address. My former boss, Peter, must've heard from her about my illness and he wrote to tell me he was thinking about me. I will not pretend we have any great affection for each other, but I will take this e-mail at face value.

The bird is no longer tweeting, but the rest remains the same. What a perfectly lovely afternoon.

I wish...

... I had learned to dance.

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