Jenny and Becky had contrived to spend the day after cooking meals to store so that dinnertime is more easily managed when I return from work in the evening. We made a list of meals, fleshed out the ingredients we'd need and hit the grocery store. With the exception of three little items, we bought only what was on the list and headed home. The kitchen was a frenzy once we got started: John W volunteered to cut up the chicken and ham, Jenny and Becky worked together on meatballs, meatloaf, lasagna, and glop (most people will call this stroganoff), and packed and stored everything when it was finished. My freezer hasn't been this full since I went through an "easy do-ahead gourmet" phase a few years ago. Thank you, my darlings (you, too, John Wallace) for this kindness.
Today brought another treat: Harlem Globetrotters tickets in Richmond! Since my usual Basketball Buddy was reluctant to venture away from her beloved roller rink, I invited my 12-year old goddaughter who was happy (I think) to go. We had super seats--on the floor!--and were entertained from beginning to end. Theresa took lots of pictures, which I'll share when she does. It was a fun way to finish the weekend.
On the drive home, Theresa asked me if I would be her sponsor at her Confirmation next year. I am touched that she asked. Confirmation isn't until next November...I wonder where I'll be at that time.
Okay, the drivel stops here. Sweet repose and rest and all that jazz...
Klonopin. Instead of the amitryptline, Ellie prescribed Klonopin.
I'll keep it handy but seriously doubt I'll take it, for the same reasons I mentioned before: I take too many pills already and the side effects are crazy. No matter how I long for diarrhea and an even more impaired motor function, the possibility of seizures and personality changes (I wonder which of my personalities would change?) and a host of other things will keep this drug from passing my lips.
Cecilia helps me get ready; she turns the shower head so it is on my favorite jet, she helps me take off my shirt, and she unhooks the bra. Then she disappears.
I can't help but catch a glimpse of myself in the mirror -- what has happened to me thus far is laid bare (ha ha, pun intended). I make a point of only looking at my eyes, sort of a survival trick. Peripheral vision being what it is I'm still able to see "the big picture." I look away.
I can still do for myself here in this little, private space. While seated, I soap up the altered face towel, the towel on my lap and the soap held carefully in my left hand. Washing is slow, deliberate, and frustrating. My arms just don't go where they need to go -- try imagining not being able to wash your shoulder or your neck without employing some convoluted maneuver. It is fatiguing.
I think I've mentioned before that I wash my hair by resting my elbows on my knees as I bend my head over. For the most part this is effective but I will confess that I spend a long time rinsing out the shampoo. I love the feeling of the water on my head; the shower jet I use provides more sensation than I get with my weak fingers. It is so relaxing I hate to stop.
Interestingly, while I am feeling so relaxed my mind begins to wander and I start with the "why me?" line of thinking. Pity party thoughts circle, sometimes landing, trying to sneak into my head. Most days I am able to shake them off and replace "why me?" with "why not me?" Most days.
Drying off is no walk in the park either. The towel is heavy and hard to hold. Not being able to wrap my hair, I once again bend my head over and press the towel to the top of my head. When I am finished, however, and lotion has been applied (another exercise in frustration) and the towel has been hung up (on the doorknob) and my nice fluffy slippers are on my feet, I'm just happy I was able to do it all by myself.
(NB: This entry began to take shape during my shower last night. It was much more comprehensive, introspective, cheesy. As it was put down on this virtual page I cut much of what I was going to say. You can thank me the next time you see me. Hugs and kisses to all.)
My street has three houses on one side and two on the other. It's short. But treacherous, as the driver learned. As he finished his first pass and moved away from the other end of the street, he got stuck. Attempt after attempt to get unstuck just dug him deeper in. My neighbors collected their shovels and made their way to rescue the poor man, whose discomfiture was apparent from the lurching back and forth of his vehicle. Happily he was able to extricate himself from his predicament without any assistance, much to his (and our) relief.
He made better plowing decisions after that and left us to dig out our driveways. Again.
I try hard not to become frustrated but it's a major effort. Anyone who knows me knows how I hate not being able to do what I want when I want. I guess that makes me rather a spoiled brat, doesn't it?
Spoiled or not, I wish I could clean off my car.
I was going to shop this weekend but now we are supposed to get snow. Lots of it.
I talked to Dr. Ellie yesterday about the stupidlaughingcryingshit and how I felt my speech was affected. She said my mouth was very likely fatigued from the exertion and my speech should improve (NB: it has). She's also prescribed amitriptyline which is supposed to be helpful on several levels. I'll keep it on hand but won't use it, at least not just yet. Why? Well, for one thing, I take too many idiot drugs now and am not keen on adding another to the cocktail. Second, take a look at the side effects. I'll pass.
C sees Jannan today. I'm crossing my fingers we have a pleasant night afterward.
You know, the snow may not be such a bad thing after all. I'm exhausted and am more than ready for the weekend.
The worst thing -- apart from the crying and the laughing -- was my speech. It was as if my mouth and jaw had frozen, rendering me much less intelligible. This frightened me and made the crying and laughing even more violent.
In my (admittedly cursory) research following the event, I was unable to determine how speech is affected; however, since emotional lability seems to be bulbar-related, it stands to reason that speech is a part of it.
It's very likely hypervigilance and/or fatigue, but I felt "off" today. I was more aware of the movements of my mouth and the thickness of my tongue. Good God, I can't believe I actually dictated that sentence.
Methinks the best course of action here is to drink a lovely glass of Noche. Or two.
I use my feet to apply lotion to my feet; a dollop on each instep is spread about using the heels, toes and arches.
I use the knobs of my dresser to adjust the back of my bra strap. I won't even try to describe the process.
I lie flat on my back with a rolled up towel along my spine to help keep my shoulders from curving forward.
I drink tonic water for the anti-cramping quinine.
I use face towels with slits cut in each corner (for easier hold-ability) when I shower.
I hold my car key fob in my mouth and lock the door by pressing with my lips.
I turn on my bedside lamp with the knuckles of the first two fingers of my left hand.
I weave a nail file through the first three fingers of one hand to file the nails of the other.
Similarly, I weave my fingers around the stem of a wine glass. For wine drinking purposes. Duh.
This list, as with everything else, is a work in progress.
But. It's done. And I added a little special spice so it's uber-fabulous.
2007: having recovered from an abysmal Chicago, a successful Richmond, and a deep digging Philadelphia, I ran the half marathon instead of doing the behind-the-scenes work. It was not my best time -- 2:08 -- but it was certainly respectable. Louise waited for me at home while I enjoyed postrace refreshments at what we now refer to as "Pmokey Bonerz."
2008: I don't have any real recollection of what happened last year, but I know I did not run the race so I must've been a cheerleader. I can't believe I can't remember.
2009: it's 9:34 AM; the race started two hours ago. I'm in my kitchen, dictating this and waiting for someone to wake up so I can have some coffee. There was some conversation yesterday about my going to the race in my role of cheerleader but it all hinged on the weather, which threatened to be icy and rainy. I don't see any ice but it certainly is raining. I have become a fair weather cheerleader and am a disgrace to the regimen. (Okay, let me be totally honest. I'm glad I'm indoors.)
Lynne told me yesterday she is going to run a 50K in Virginia Beach next week. The good friend part of me is very happy she is doing this because it is the logical next phase for her. The stupid part of me is sad I didn't know about the plans earlier. I hate I'm not any longer a part of things at that level.
Last night I dreamt I was driving in New York City and had to go down a hill which was so steep it seemed it was almost a 55° angle (Is that right? No, not a right angle, I mean is 55° steep -- more steep than 45°? I never know.). It was impossible to see any other cars and I could only barely see the traffic light as I rode the brake going down the hill. The light turned red and I pushed harder on the brake and barely managed to stop. When the light turned green I pulled into a bus depot where they were taking applications for employment. I went into the building looking for some breakfast and was told my companion (companion? I wonder where he came from?) was upstairs. The only way to get upstairs was to climb various circular stairways and each time I would get to the next level I was told my companion had gone ahead. I could catch a glimpse of a dark pinstriped suit and knew instinctively that was who I was looking for, but I never did catch up. Crazy, crazy dream.
My wild child has had a mostly successful weekend. There was a hint of a rumble Saturday afternoon when we ran into Target -- I will call it an "unexpected expectation" moment. We moved past it, however, I think because she had had an enjoyable afternoon at a friend's (!!!) and was anticipating going to the skating rink AT NIGHT. The lesson I have learned here is not to take her shopping. Ever again. I mean it. E-VER.
Had enough? I hope you have a lovely Sunday.
The Top 10 Pick-Up Lines Heard in an ALS Single's Bar...
10. Your powerchair or mine?
9. Hey there Good-looking, what's your FVC?
8. My hospital bed has 26 different positions.
7. Wow! That vent tubing really accents your eyes.
6. I bet you look great in a pair of Depends.
5. I would really love to get under your bipap mask.
4. Ithinyerbodivvulenwanugomyu (speech device broke).
3. As you can see, I'm drooling over you.
2. Bartender, get the little lady another Ensure and I'll take another shot of Lactalose.
And, the number one pick-up line heard in (my imaginary) ALS single's bar is...
1. Is that your feeding tube or are you just happy to see me?
Please meet Wilbur Weston, a regular on the soap strip Mary Worth. Wilbur, for the most part, is unexceptional and has recently been introduced to Facebook which is why we see him seated before his computer. You may ask why I have posted Wilbur's picture here. Why, indeed? Look at Wilbur's hands! Except for the pudgy thumb muscle, these look like my hands! My fingernails are prettier, though.
So. My hands and I have had a pleasant evening. Upon arriving home I discovered D#3 intently doing homework. Not wanting to disturb her, I decided to try to prepare dinner. I'd purchased some gnocchi yesterday and thought that might answer. First, to open the plastic packaging. I used a steak knife and cut away around the perimeter of the package. I had to use my right forearm to hold the package in place as I use my left hand to cut, but it was a huge success. Next, I had to get the pot out of the cupboard. We keep our pots and pans in a lower cupboard; I bent over rather than knelt, rearranged some of the smaller pots and, with both hands/wrists, lifted the large pot to the counter. Another success -- I was almost giddy! I put the pot in the sink and turned on the tap and filled the pot about half way. This next step was more difficult: I had to lift the pot from the sink to the stove. My left hand grasped the handle on one side, my right wrist supported the weight of the other. I managed to get the pot on the correct burner and we were cooking! The water boiled and I dropped in the gnocchi, very pleased with myself. Another difficulty was encountered when I had to drain the pot but, with Cecilia's able assistance, that task was managed as well.
It wasn't much, but it's more than I've done in a very long time. I must admit it was a bit wearying, but well worth it. Miss C got her homework done with no interruption and ate a delicious meal prepared by Wilbur Weston.
You can submit via a comment (please advise if you do not want it published) or email me (address below the PLM badge).
I'm curious to see what you suggest, how much of it fits my former and present ability, and what my number is after all the additions and subtractions.
Thanks to everyone.
It has caused a lot of conversation on PLM. What do you think?
Last week, the LA times published a beautiful piece written by Martin Welsh, who is the cousin of Jared Gill, one of my fellow ALSA board members. I was truly moved by the piece and asked Martin if he would agree to be a guest writer for DFTALS this week. He agreed and I am thrilled to share his thoughtful essay.
Reprinted with permission, this article was first published by the L.A. Times, July 26, 2009. Martin Welsh grew up in Los Angeles and graduated from UCLA Medical School. He now resides with his wife in Camino, Calif.
I am a 55-year-old retired family doctor with a large, loving family and innumerable friends and former patients whom I see often. I am an extraordinarily lucky man. For the last five years, I have also been a patient. I have ALS (or Lou Gehrig's disease), a cruel neurological illness in which a normally functioning intellect becomes trapped in an increasingly weak and eventually paralyzed body. Soon, I will die from it.Through my career, I tried to honor my patients' end-of-life wishes. But after a quarter-century as a firsthand witness to death, I've developed my own perspective. It's not that I'm a quitter. I have struggled against adversity of one sort or another all my life, and those challenges have helped prepare me for what I face now. I still delight in accomplishing difficult things, and I always wear a bright red ALS wristband that says "Never Give Up. "That said, there will come a limit. I have made it very clear to my wife, my family and my doctors that I want no therapy that will prolong my suffering and lengthen the burden on others. I do not want a feeding tube nor a tracheotomy when the time comes that I can no longer eat, drink or breathe for myself.
Physicians and families sometimes feel an obligation to do all that can be done to keep someone alive. I believe this is based in equal measure on a fear of death and on Western medicine's increasing ability to prolong life near its end. I was able to diagnose myself at a fairly early stage of the disease. My case was slower to progress than some, and so I was able to keep working as a physician for nearly two years. During that time, I was enormously grateful -- for my patients, for sunsets, for golf games with good friends. Life has been truly wonderful, even as I have slowly lost the use of my hand, then an arm, then both legs and my speech. But as much as I have stayed focused on what I am still able to do, it has become harder to ignore the things I am losing. Today, my guitars sit idle. I haven't used my stethoscope in years. My jogging shoes gather dust in a closet as I watch my belly grow from lack of exercise. I remember the last time I tried to shoot a free throw with a basketball and I was five feet short of the rim.
Today, I find myself facing the kind of "quality of life" issues I discussed innumerable times with my patients. Answers vary from person to person. But the fundamental question is always this: At what point is the quality of life no longer worth the emotional and physical costs of maintaining it? I am not afraid of dying or death, and that is a wonderfully comforting thing for me right now. I have seen so many "good" deaths in my time as a physician that I know this passage can be peaceful, spiritual and even comforting to those left behind. I hope for such a death.
I have also started to think about how I will know when I am ready for it. To that end, I often think about what I call the "100 Things." Here's how it works. Imagine a list of 100 things you do most days. Some are routine, some are "chores," some are pleasurable. Get out of bed and walk to the bathroom. Kiss your wife. Answer the phone. Drive your car to work. Go play golf with your friends. Brush your teeth. Write a letter, lick and seal the envelope closed and put a stamp on it. Hug your child. Of course we do many more than 100 things each day, but for now, just imagine 100 that are essential to the life you live. Now if you take away one, you can still do 99. Is life worth living without being able to smell the rose in the garden? Of course it is! How about losing two or seven, or 23 -- is life still worth living? Of course!
But suppose you get to where you've lost, say, 90 things, and now with each thing taken away, a bad thing is added. You can no longer walk well, and you start falling, and it hurts. Your grip is gone, and you also suffer the ignominy of wetting your pants because of bladder spasms. You can't turn over in bed, and that also means you will get bedsores unless someone turns you frequently. Life is still worth living, but you're getting tired. At some point, no matter who you are or how strong, you can lose enough things that matter -- and acquire enough negatives -- that the burdens will outweigh the joys of being alive. This is the stage when, as a doctor, I would reassure my patients and their families that they had fought the good fight and it was now OK to accept moving to the next phase.
I know I will one day reach that point. And that's why I worry about feeding tubes and ventilators. It has been my experience that these things are at times started almost automatically, and once they are started, they are next to impossible to stop. I have seen too many unfortunate people kept alive for years in hospitals or nursing homes, beyond all quality of life. Sometimes it causes untold stress in a family. Some of these cases even have made national news, and, unbelievably, our government and some national religious leaders even weighed in, as if they had a right to do so. I worry that at some point a feeding tube, or other artificial substitute for a basic body function, will be medically "indicated" in my case. Intervention at that time might seem to make sense to those around me. But the result may be that I am kept alive only to count off the remaining things on my list of 100, such that I am forced to live well past where I would want to say "Enough."
I like to know where a road leads before I set out on a journey. Right now, one path I could take leads to a place I don't want to go. I am determined not to start down that path, even if others think I'm being premature in my decision. In short, I may well be ready to die before my family and friends are ready to say goodbye. But they know that, as I face my diminishing list of the 100 things that make life worth living, the choice of quality over quantity has to be mine to make.
I hate coming home.
I am not a very good mother.
Looking on the bright side does help me manage Louise, but sometimes a bright light shines on reality and it's impossible to ignore. When this happens I have to rearrange my thinking, accept the new normal, and push on.