The Sign

“The events of this year proved to me that there is a point at which perseverance is no longer a virtue but at best an exercise in futility and at worst a means of suicide.” - me

I can’t believe it has been over a year since I posted on this blog. This was one of the most difficult years of my life. The events of this year proved to me that there is a point at which perseverance is no longer a virtue but at best an exercise in futility and at worst a means of suicide. What was I thinking? I know the exact point at which I decided that I “would have” Alec involuntarily committed, but that was way past when I “should have.” What were the signs? Yes, his ability to care for himself had declined, that had been happening for years but when had it slipped this far. It began with my laying out his clothes and toiletry items for him in order and he would go through the routines himself. Then I had had to make a little numbered list. A short time later, I had to modify some of his items offering him an electric shaver and toothbrush to make things easier. At some point he began to get stuck and I would have to give him verbal prompts to start him up again. It progressed to my having to finish his shaving and teeth. One day I found myself drying him off and dressing him, (it is really difficult to push on an adult man’s sock!). Eventually, I did his whole routine right down to underarm deodorant and blow-drying his hair. Even things I had been able to take him out for were gone, like having his haircut, so I had to learn to do these things also. Was this the sign?

OR, was it when nine-year-old Sophia and her BFF Jane posted signs on Alec’s bedroom door-

A really fierce DAD

Do Not come in for safety reasons

This DAD has been placed here for mental reasons so we ask you to not pet or stick your hand through the door

P.S. It might bite! Do Not touch DAD

A skull and cross bones was added at the bottom to help the illiterate or those Europeans that might wander in.

No this was far too subtle for me to pick up on.

His ability to feed himself was also declining. When I was still working full time I would prepare him a large breakfast, which he would eat and then I would leave an equally large lunch in the fridge for him to heat up later. I soon noticed that he was not getting the lunch out of the fridge so I made things that would not spoil and left them on the counter. In the afternoon I would clear them from the dining room table. Shortly after this I noticed he was eating his lunch at the counter, but not finishing it. Then the day came that I returned home from work late and he was very hungry, walking back and forth past his lunch unable to initiate the action of eating it. It was at this point I knew I couldn’t work anymore.

But his eating would become more troublesome yet. My girlfriend Lesley said that he ate like a Hobbit. It wasn’t long before he began getting me out of bed at 4am demanding what would come to be known as First Breakfast, which was always cereal fresh fruit and milk, cooking not being a possibility for me before I have had my coffee, followed by his bathing routine and Second Breakfast. This was a large cooked meal consisting of 3 eggs done is various manner generally with cheese and some veggie, served with toast, waffles, bisquits, pancakes or rolls of some sort with sausage or bacon. Then came Elevensies, a giant Greek yogurt with honey nuts and fruit, then Lunch, Supper and Dinner, equally large meals, prepared fresh- all of this by 4:30 in the afternoon. One day he began shoving so much food in his mouth at one time he couldn’t swallow it, so I began to cut the food in small pieces and sit with him monitoring how he ate it and making him pause once in a while to breathe. Slowly his ability to maneuver his food into his mouth was gone and so ended our lunches out. Now I had to actively feed him. But this relentless malevolent disease does not stop there, no- he stopped chewing and started choking and I had to go to a softer diet. Still this did not seem like a sign that I should throw in the towel. Was this the sign?

OR, maybe it was when Morgan called me at a wine tasting to get some help with Dad.

I was in a clients shop serving up a lovely cherry red, herbaceous pinot from the Central Coast of California and a chunky bold Cabernet from Napa. I was dressed professionally and quite a crowd had gathered to listen to my lively banter on food and wine possibilities when my cell phone began to buzz.

“Pardon me a moment,” I said to the guests, “Yes, Minnie, (my affectionate name for the 17year old)?”

“What? He did what? Yes. I’ll speak to him, put him on. Alec? Listen I want you to let Kara go right now and give the cookie dough back to the girls! Do you understand? They will give you some cookies when they are ready. And I don’t want you chasing them. No it is not time for the baby to go home. What did you do with the baby? No, no! Under no circumstances are you to lock the baby outside, is that clear? You already did? Go get him- wait, give the phone back to Morgan. Morgan? Did you know he put the baby out the front door? Well, go get him! Jane is in the closet? Which closet? Did he put her there? Oh, he just knocked her in because he is so clumsy- he took her juice box? Get her another one. Put him back on- Alec? I think it is time for you to go to bed. I will be home in an hour now you go on up to bed, ok? “

I turned back to my guests. “Sorry about that.” A handsome young Father who had come in to buy some wine with his two little girls in tow said, “Sounds like that Alec is a handful, kids can be challenging.”

“You have no idea,” I replied, and proceeded to pour myself a generous serving of the Cabernet. “Let’s taste this together shall we?”

No, again, this was too subtle for me. I still did not realize that I had lost control of the situation. To me denial was just a river in Egypt. I knew it wasn’t normal that I had to hide at night to sleep, eventually having to get in my car and drive down the block and sleep in the car. This worked quite well until the heat of the summer and the pesky mosquitoes made it impossible to rest and I had to start finding new hiding places in the house. I would lock myself in the art room curl up in my Papasan chair and try not to breathe too loud for fear he would find me. “Tap, tap, tap, Lisa? Tap, tap, tap, Lisa?’ on and on it would go until I could finally fall asleep despite the tapping.

All of these things I bore as a natural progression of his illness. He was still Alec to me and I loved him with all of my heart and wanted to make his life as happy as possible. And I wanted to keep our weird family together. It had become like the story of the boiling water and the frog. That if you put a frog in a pot of cool water and slowly begin to turn up the temperature it will boil to death without ever trying to jump out of the pot. But, I am not a frog, and I was reaching my boiling point. It began with the dragging.

Too Many Pets

This incident took place 4 years ago when I was trying to sell my home in New York. The strain of working two jobs and caring for a family had left some areas of my life in chaos.


Too Many Pets

I don't really know how the pet situation got so out of control. It happened slowly at first and then like a video going viral on youtube, it seemed to explode over night. It is obvious that I have some emotional holes to fill due to the stress and grief of our situation. The relentless change this disease was bringing to our lives left me in a state of ongoing reorganization. I had been working two jobs for over a year and I just didn’t have time for everything. That being said, I truly believe another irritant helped to create this pearl of chaos and that was the “animal rights” lunatics at the ASPCA.

I had on three separate occasions, several years apart, and at different locations in Westchester County, attempted to adopt a kitten. Although I had three healthy and happy children, it was somehow determined that I was not responsible enough to own a cat. The third time was the worst. Attempting to adopt two white kittens, once again, I was turned down. This time because I had allowed a cat I owned to have a litter of kittens before having it fixed. I believed that raising a litter of kittens was a mandatory childhood rite of passage. All the kittens were wormed, given shots, and packed off to good homes with a bag of their favorite food. I believe I had handled the entire thing very responsibly. The ASPCA disagreed. I got into such a heated argument with the Forgotten Felines headmistress that she followed us into the parking lot.

“I would never allow someone like you to adopt one of my cats! I would never allow any of my cats to breed,” the deranged, animal worshiping nut was screaming.

“It's obvious you have a problem with breeding, maybe that's why you have 11 cats instead of any children or did you adopt all these cats because nobody else would sleep with you?”

“Get off my property,” her voice had lowered so I knew with satisfaction I had really gotten to her.

Oh, I'm leaving and you know where I'm going? I'm going to a puppy mill to buy an expensive pure bred dog!” She drew her breath in audibly so shocked that she couldn't speak. Despite the lack of cooperation from the ASPCA or maybe because of it, I found myself this particular morning the distraught owner of 12 cats, four dogs, two hamsters, one undersized, illegal turtle, and a tank of fish.

We loved our pets. When you don't have much money they are a great source of entertainment. Kittens in the Velcro stage, that age when they can run about but still cannot retract their nails, are especially fun. We spent the entire morning the day before playing with them. Alec would walk through the kitchen in his bathrobe and one of the kids would sneak up behind him and stick a kitten to his back, sort of like a kick me sign, and we would laugh and watch him walk around totally unaware he had a rider bobbing and swinging behind him. I stuck four kittens to the front of my bathrobe collar then strutted about the kitchen modeling for the kids.

“Our model Lisa is wearing the latest in Spring fashion the new classic trench coat from Armani with a lovely, kitten collar.” The girls howled with laughter.

My buff- colored Cocker Spaniel, Dr. Watson, came into the kitchen to see what all the excitement was about and we decided to see how long each of the kittens could ride him. My then 12 year old daughter, Morgan, would grab a kitten and set it on Watson's back right between his front shoulders where he couldn't reach and I would start the timer and just like the rodeo we would see how long each kitten could hang on. Watson would turn in circles, winding his way across the kitchen floor trying to grab the little tail of the kitten and the kitten would meow and hiss and hold on tighter. Later on, I would find Watson asleep with two little kittens curled up on top of him. They gave me so much pleasure, from watching the girls bathe with Greenie the turtle swimming around the tub or finding Rusty the hamster stretched out on a Barbie couch, in front of the Barbie TV, after his latest escape. They were always up to something funny.

However, I was not enjoying this morning. Last night our Papillon, Tippy, had run off and we had not been able to find her. She was a notorious tramp. I truly meant to have her fixed but money was so tight and it was over $500 for this operation. Usually she just ran out the back door and across the street to the neighbors. First, because there was an un-neutered male dog there, probably the ugliest dog I have ever seen, named “June”, by the BK's that lived there. We called them BK's, short for bad kids, because they were positively evil. They were always shooting someone with their BB guns or stealing or destroying property. Two, I believed we had one of those animal rights lunatics living in the house next door to them, and a feeder to boot. These are people who feed every animal that comes on their property so it is only natural that these animals keep coming back to their doors. I hated feeders.

The Feeder had returned our dog several times. Tippy always went straight to her house. Mind you we weren't letting Tippy out. We had children and children are not careful about the closing of doors. Tippy would simply dive out after my youngest, and she would never notice. But this upset my neighbor terribly. It wasn't that she didn't want the dog on her property; it was just that she was worried it was going to be hit by a car and killed. It turns out that she had a dog that had met that end, and seeing how she had no children this dog was like a child to her and her guilt drove her to protect dogs who might be similarly endangered. At first I sympathized with her and felt very bad and I truly tried to keep the dog in the house but I felt it was cruel to have her tied to a door in the house all day long.

The children were off to school and I was considering my shower and how to go about finding my dog when out the living room window I see the Animal Control truck pulling up in front of the Feeders house! I knew immediately that while I was running up and down the street last night calling out “Tippy! Tippy!” distressed and worried, she had been sitting smugly behind her Walmart curtains watching my unease and planning how she was going to teach me a lesson. There was no time for a shower. I was simply going to have to head out the door in my housecoat, hair sticking up, and no makeup.

As I rushed to the door I noticed a scurrying motion in my peripheral vision. I looked again and there was Smokey, one of our hamsters, who must have escaped this morning. Glancing around I noticed two of our 12 cats dozing on the sofa, all excellent mousers, and decided I’d better catch him and put him back in the cage before going outside to deal with the Animal Police. I bent down and grabbed the errant little rodent from behind, but he was not pleased and did not recognize this as a rescue attempt, instead he bit down with his sharp teeth and hung on like a Pit Bull Terrier.

The reaction I had was automatic and not intentional. I brought up my arm in a wide arc like someone performing a Kung Fu motion, fully extending it with a sharp stop at the end. Smokey's grip was no match for the power of this maneuver and he let go sailing across the living room and smacking into the wall with an audible “thunk.” The force of the impact propelled him forward and he dropped with a splash into the fish tank. Fish scattered instantaneously to the sides of the tank. I watched, in horror, unable to move, as he began swimming up from the bottom of the tank. When he reached the surface I turned to look out the window and saw that the Animal Cop now had my little Tippy in his hands and was heading towards his truck. I looked back at the tank and thought “How long can a hamster tread water?"

Not knowing the answer I ran across the room, grabbed the fish net and plunged it in the tank scooping up the hapless creature. I dropped it into my other hand. It did not bite this time, which proved to me that hamsters could be trained, although the means seem a bit extreme. I ran straight out the front door arms raised yelling “That’s my dog! Stop! That’s my dog!” all the while gesturing wildly with a wet hamster. Four cats had followed me out the door, one I nearly fell over. Now I am yelling at my neighbor, cats running in and out of my legs, “How dare you call Animal Control on me!” I was shaking my fist at her. When I realized I still had the soggy little hamster in it and I quickly shoved him into my housecoat pocket.

The animal control officer headed up my driveway and returned Tippy to me. He seemed truly sorry for the situation. “Try to keep the dog inside,” he said. We know about her, she calls all the time. “ I have been looking for this dog all night, I was very distressed, and she had it the whole time.” “Well, he said, she’s a bit of a lunatic.”

The Circus

I love the circus. It's loud and colorful and exciting. When I was younger I wanted to run away and join the circus. I didn't really have an interest in doing any of the acts, I just wanted the clothes. If I did have an act, it would be the dog act, then I could dress up the dogs in fabulous outfits too.

The Ringling Bros. Barnum and Bailey Circus came to Raleigh and I took the whole family. Now, if you have been following my blog at all, you know how sick my husband is. You would think that I would remember this and make accomodations for it. But I don't. I know Alec loves the circus and I buy regular tickets and off we go; accept we don't.

The first adjustment I should have made was an earlier leave time. I did not. Here's how things went.

"Ok, everyone in the car!" (you may have noted by now that in many of my stories, this is how the dialog begins.) Everyone files out happily to the car. Ofcourse not. Minnie is not happy. She is burdened with mounds of homework and is having an anxiety attack.

"How long is this thing?Do you want me to fail Chemistry?"

"Hours and Hours. Don't worry about Chemistry. If you flunk out you can always wash elephants for a living. Think of this as career research. You should be excited! Other children would be happy and grateful if their parent bought circus tickets."

"In the middle of the school week? Didn't they have any weekend tickets available?"

"Weekends are too crowded; weekends are for conformists."

"Weekends are for people who work."

"Pfft."

"Fine, I'll just stay up all night, then I have to take that cold bus so early in the morning.."

"Ok, I'll drive you to school tomorrow, you win. You are so not fair."

"I didn't buy circus tickets for a Thursday night during the school year."

"Pfft."

"I'm happy and grateful ," says little Sophia.

"Yes you are, and you are my favorite child tonight." Morgan rolls her eyes "Whatever.."

"Where's Dad?" Dylan says as we settle in to the car. I gaze towards the door.

"I thought he was coming," I said. We wait. I see Alec come out the door...then go back in.

"Uh oh, I better see what's keeping him." As I come in the front door he heads up the stairs. He is not wearing shoes. I head up after him. "Honey, lets put your shoes on. We need to leave now. I give him his shoes and guide him to the edge of the bed helping him to sit down. For a long time it has been kind of like living with Mr. Rogers in regards to his sneakers and sweater. Deciding when to wear or not wear the sneakers and the sweater is a big deal, followed by that slow routine just like in Mr. Roger's Neighborhood. In my mind I hear "Can you say, hurry the f___ up?" But I stand, outwardly patient and calm. "Ready?" I take his hand and lead him towards the stairs. I let go and walk quickly down the stairs only to find he has gone back up and into the bedroom. "Alec? Honey, did you forget something?" He comes back out and starts once more down the steps. And then he turns around and goes back up. "Alec, we need to leave, can I help you with something?" He comes back out of the room. This time he has no shirt on. "Alec, wait there." Realizing I will need backup, I head out to the car to get Dylan.

"Dee, I need you. I can't get Daddy out of the house."

"Why are you bringing him?"

"Because he is your father and a part of this family and he loves the circus and needs to be with us. Now just get out of the car and give me a hand!"

Dee and I stand at the bottom of the stairs watching Alec, walking shirtless, up and down the hall.

"Ok, I'll go up you stay down here." I lead Alec back into the bedroom explaining as we go how we need to put our shirt and sweater on and leave so we make the circus on time. I help him back into his shirt and go into the closet to rumage around for his sweater, which he hung up again. I emerge to find his shoes off. One more time through the sweater and sneaker routine and I grip him firmly by the arms and direct him down the steps. Halfway down he turns around and I block his way. "Nope, down you go." He turns and gets to the bottom of the stairs this time before turning around. Back up he comes. But I have moved halfway down and block his return. I look over at Dylan by the door and begin to get a fit of giggles. "Ok Dee, this time when he gets close to you, grab his arm get him out the door, and close it fast." This works! He is out of the house. I lean against the stair way laughing at how absurd this is and then the tears start coming. "No, I will not cry! I will not, I am going to the circus with my family!" and out I go. I see with satisfaction that every family member is safely inside the car secured in seatbelts.

Arriving at the RBC Center we are directed to a parking spot no where near the entrance. I have forgotton that we have a handicapped parking tag. Dylan is incredulous. "You park us right next to the entrance at the health club when Dad isn't with us, but in the back of the parking lot at the circus when he is?" You must see, I just don't think of us as handicapped, it hasn't sunk in. I think of the tag as a perk. I believe that after all I have had to endure I deserve the closest spot to Walmart. We slowly, and I do mean slowly, make our way to the entrance, the children walking way ahead and glancing back only when I yell for them to slow down.

Inside the atmosphere is charged with excitement and the smells of cotton candy and hot dogs. Brightly colored booths are everywhere selling toys that light up and spin, stuffed tigers, and elephants. We get to our section and I realize I have made another error in judgement. The stairs down to our seats are steep and narrow with only an occasional handrail for support. I should have taken this into consideration when ordering tickets. I didn't.

The clowns are already entertaining the crowds while everyone gets seated so the noise level is high. Alec freezes. His gait, just on flat surfaces, is awkward and uncoordinated. Stairs are much more challenging. I stand next to him trying to steady him but knowing that if he falls I'm going with him, cause there ain't no way I can hang on to him. We are on the second level and I can imagine us falling and tumbling down a long way before we come to a rest against the balcony rail. I can feel everyone's eyes on us as we slowly make our way down, me cautioning and speaking quietly to Alec the whole time. The children are urging us too hurry up and I am shooting them my slitty, evil eye look.

Finally we are seated. Even though I realize many people are staring at us because of Alec's strange movements and mannerisms, I am happy. We relax into our seats and for the next two hours are thoroughly entertained and transported into the intriguing world of the circus. Close to the end was the Human Cannon Ball couple. Yes, they were married, human cannon balls! They shot out of the same cannon! After the Circus Master quieted the audience, there was a drum roll and BOOM- out they shot all the way across three rings to land on their backs on the big air-filled mattresses. They leaped up immediately, sparkling capes flying behind them as hand in hand they ran to the center ring and bowed in unison to the crowds. It was inspiring. I turned to Alec and said, "Honey, why don't we do that anymore?" He turned to me and then he laughed out loud. I started laughing too and we held hands and exchanged that look that only two people joined at the soul can share.

On Being Overwhelmed

If I had to name the biggest obstacle I have to overcome it would be the condition of consistently feeling overwhelmed. I have good reason to fell overwhelmed. I have two teenagers, one 7 year old, three dogs ( all purebreds, but that is a different story), one cat, one fish ( that I have replaced five times) and a husband who has full blown Huntington's dementia in his forties. I own my own home and up until July of this year I had a full time job. Surely a feeling of being constantly swamped with too many conflicting activities and responsibilities is a daily fact of my life. But there is another reason. My brain is simply to complex for the input of modern society. Simply put, I think about each thing I do too much.

For example, a month or so ago, I attended an all day scrap booking meet-up. Scrapbooking is not a simple hobby to pick up and take to someone’s home, like say knitting. Getting ready and packing my “stuff” to go took me three full hours. You must understand that I own enough art supplies that if I were to add up all the receipts, I could make a good down payment on a house. I will spare you the explanation for how I decided what to take with me because anyone may have been daunted with so many choices. No, what really threw me off was that the hostess asked that everyone bring a “snack to share” Three little words that would ruin my entire morning. In my defense I did attempt to go to the local supermarket, less than one-quarter mile from my home, and on the way to the meet-up, to pick up a simple “snack to share”. I took a small basket and wheeled it through the store for 10 minutes looking for something appropriate.

I live in North Carolina and folks are polite here and even though the cashier looked exactly like a bored basset hound she managed to greet me with a somewhat less than enthusiastic “Good Morning” on the way in. I wheeled straight to the dairy section. The cheeses looked mundane and machine manufactured and many were labeled “cheese food” which translated means, “I don't even contain any milk.” I took a look at dips, the contents were extremely long lists of ingredients, such as, hydrolyzed corn, silicon dioxide, disodium inosinate, for heavens sake spell check doesn't even know what these are! No, I don't want those. All the baked goods contained partially hydrogenated fats and high fructose corn syrup, no. I came up to the counter with an empty basket and asked for two packs of cigarettes. Please don't bother to write and tell me that there is a misconnection in someone who wouldn't eat high fructose corn syrup but would smoke. The cashier regarded me warily and if I were still in New York she probably would have said something about the empty basket, but as I said, folks are polite here.
Back in the car and ten minutes in the opposite direction of the Meet -Up, I was in Trader Joe's, my favorite food shop, happily filling my cart and then chatting with the cashier about the delicious and healthy food I had gathered.

I arrived at the meet-up on time; I am always on time, with a full bag of groceries. The hostess was surprised when she saw my bag, undaunted, I went directly to the kitchen counter plopped down the bag and requested a cutting board, sharp knife, pair of scissors, one large platter, several small bowls, and a bread basket. Snipping open a package of Italian Proscuitto I began to lovingly fold each long slice and place it on the large, white, oval platter she had given me. Next I opened the triple crème Brie Cheese and began to make perfect slices so it would be easy for people to eat. 

About this time another guest arrived. She came in and placed her box of Krispy Krème glazed doughnuts on the counter and went into the main room to set up her crafting area. In the mean time, I was opening up the truly magnificent quality Gouda I had brought that had just the right amount of buttery texture and nutty flavor, which I sliced into pieces the exact size of the Brie. I was filling two small clear glass bowls, one with wine cured, Greek, Kalamata, pitted olives, and the other with an antipasto salad of roasted vine tomatoes, fresh mozzarella cheese, extra virgin olive oil, artichoke hearts, oregano, roasted garlic and sea salt, when more guests arrived, one with a store bought veggie platter and dip and one with a store bought fruit platter. 

Someone brought a bag of mixed bagels. All placed their items on the table and went directly into the crafting area. I was now slicing a beautiful French baguette into uniform slices cut on an angle and heating up the spinach and artichoke dip. Still more guests coming in and leaving bags of chips and generic sodas on the table and heading into the crafting area. I was just putting out a box of whole grain, preservative and hydrogenated fat free crackers for the dip. 

As the last of the guests arrived and everyone was now in the main room beginning their crafting I was opening up a large container of milk chocolate and dark chocolate covered almonds and a container of crispy, chewy, apricot and pecan glazed gourmet popcorn. Finally, after placing a bottle of Mojito Lime and Spearmint sparkling water on the table I was ready to head back to the car and get my scrapbooking supplies. Looking over the spread I had prepared I felt a little ostentatious. Everyone seemed to enjoy it though and the hostess found she didn't need to make us lunch.

Why do I do this? I can assure you I am not trying to impress anyone, I just can't keep from over complicating the issue. My thinking goes something like this. I'll just get some good cheese and crackers. As I am choosing cheese I think “Maybe someone won't like Brie so I better have a contrasting semi-soft textured milder cheese as well. Oh, look fresh baguettes! But is one enough? I better get some crackers too. Gee, it would be nice to have some fresh greens with this as a garnish and something a little salty. Ummm, the olives look good. I should bring something sweet, everyone wants something a little sweet..... and, on and on it goes. $50 dollars later I have a “snack to share.”

This morning, once again, I get up, and like an alcoholic after a binge, I resolve not to be so complicated but to just get on with the day. Stop over thinking, stop considering all the choices. Do things simply. I make my husbands breakfast. Let's see, I'll just make him some nice eggs and toast. That's easy! I crack three cage free, omega eggs into the pan. He really needs more calories, humm, I know, a handful of this nice shredded cheese mix will be good, but what about veggies, ah, I have some spicy mixed baby greens and I'll just saute some of those little grape tomatoes..... Fifteen minutes later He has a fresh fruit cup, omelet, shade grown Sumatra coffee, blueberry juice and two slices of Ezekiel bread with French butter. I have forgotten what I needed to do next. I am overwhelmed. Oh well, there's always tomorrow.

The Hoop-a-thon

(Below is another sample chapter from my book. This took place shortly after Alec was officially diagnosed. I was in the grieving process, a process which is never ending with this disease. This was my first function as a member of Huntington's Disease Society of America.)

Hoop-a-thon

It was much colder than I expected and I wasn't dressed for it. I have never understood my reluctance to put on a coat. I feel the same about carrying a purse. I will shove everything into pockets even going to the extent of making extra pockets a consideration when purchasing clothing, (Yes, its a lovely evening gown but it doesn't have anywhere to put my compact.) I was sorry I hadn't put one on this particular morning, because the wind was whipping my legs and my tears were freezing onto my eyelashes.
It had been one long pity party morning for me. I put on make-up; it slid off my face and onto the front of my shirt. I dried my wet face, changed my shirt and reapplied, only to have it then drip into the sink while I stood there trying to work up my courage to attend the day’s event. I cleaned my face and decided to go without. I didn't really care how I looked. At that moment I didn't really care about anything except letting God know how really disappointed I was in him. My mind was sending up a continuous string of angry, hopeless thoughts.
“Ok, let's go. Come on everyone in the car.” I ordered as I handed my six year old, Sophia her jacket
“Alec, are you coming?”
“I think I'll pass.”
I sighed, “Of course you will.” and my eyes began leaking again.
“It's o.k. Mom?”
This comment came from my eldest daughter Morgan who had bravely volunteered to sacrifice her pride to shoot baskets for us today. Morgan is a truly brilliant, loving, devoted child, who is also truly not athletic, so I was touched by her willingness to represent our family at the Huntington's Disease Hoop-a-thon. My son, Dylan, was supposed to shoot for us but he had to begin his new job at Trader Joe's that morning and Morgan was taking his place.
In the car the two girls immediately began to bicker. Morgan didn't like Sophia's hair and was attempting to fix it. Sophia was having no part of it. I was experiencing the beginning of a panic attack and while foursquare breathing, I stuck my hand in the glove box, rummaging around for my bottle of “Dr. Bach's Rescue Remedy.” I don't respond well to conventional medications. My physician had tried to convince me to take some sort of anti depressant, anti anxiety medication, but I declined. The Rescue Remedy was a combination of five flower extracts said to calm anxiety but I had a suspicion that the 60% French brandy they were contained in was the active ingredient. I took four drops under my tongue.

“Just let me get it out of your eyes!”
“No, I am a kid and I don't have to be a fashion girl every time I go out.”
“Well, you look ugly.” Sophia begins to cry. “Mom, she said I look ugly!”
“You look beautiful Sophia, Morgan leave her alone, pleeaaassse!”
“ I'll just put it in a pony tail, you like ponytails.”
I was ignored. I took four more drops, then considered discarding the dropper and just tipping back the bottle but decided that arriving someplace before noon with brandy on my breath might cause a scandal. I reached back into the glove box and produced a spray bottle of essential oils and began energizing my space.

“Ewwww!” both girls chimed. “Mom please, stop.”

Finally we arrived at Cardinal Gibbons Catholic High School, and here I stood in the parking lot, frozen tears, no makeup, reeking of essential oils and French brandy, herding the girls out of the car and into the gymnasium.
The gym is large and modern in cool tones of green and gray. There are six regulation size baskets and around each are groups of teens and adults shooting baskets one after the other from the foul line. John Canning, the President of our local chapter of HDSA, and his wife are standing behind the table welcoming people as they come in. Mary Edmondson, John's sister comes over to greet us. I don't know what she says to us. My face is hot and my ears are buzzing, I feel a bit faint. This is not a club I want to belong to. We get our Hoop-a-thon tee shirts and I sign Morgan up for the Women’s team. Sophia is very excited.
“I want to shoot, Mommy.”
“Sophia this is for big kids and grown ups."
“I can shoot. I'm good at basketball.”
I look down at her tiny frame. “Sophia, look at the size of those boys,” I say pointing to the Irish Catholic High School basketball team that is practicing in front of us. “You don't reach up to their knees.”
“ I want to help Daddy. I want to shoot,” she pouts.
“Come on let's watch Morgan shoot,” I say trying to distract her.
I send Sophia over to the snack table to see if I can get her mind off playing basketball by bribing her with a donut. It works for the moment and gives me a chance to sit and look around.
It is obvious by the dance like, ceaseless movement by some in the crowd that they are victims of this disease. I think of my handsome husband sitting at home, probably in front of the TV watching the weather with the sound turned off, for hours. I feel very lonely and can feel my face beginning to contort into the ugly cry. I want to be supportive to Morgan and try to be a bit of fun so I take a deep breath and reach into my pocket, producing a bottle of Wild Rose extract, which the bottle informs me, “helps you feel interest and joy in life when you feel apathetic and resigned to the situation you are in.” I take four drops.
It is time for Morgan to shoot. Each person gets a total of three minutes to shoot as many baskets as they can from the foul line. Sponsors pay for each basket they get in. This event earns quite a bit of money for HDSA, the Huntington's Disease Society of America, to help fund research for a cure. Morgan is nervous but determined to do her best. The buzzer sounds and Morgan shoots. Well, she sort of flings the ball from the front of her chest while simultaneously kicking her right foot up behind her and I can't help but think of Sandra Dee kissing a beau in those old black and white movies. After three minutes Morgan sunk a total of three baskets. I cheer wildly. Everyone else pats her and tells her she did fine.

Sophia huffs, “I can do better than that. I want to shoot!” One of the women on the team says, “We'll sponsor her if she wants to shoot. She can shoot on the women’s team.” I am worried she will be disappointed but one look at her excited little face and I give in.
Up to the foul line she goes and takes a couple of practice shots that don't go anywhere near the basket. She is not deterred. The buzzer sounds for the start of her three minutes. She squats into the granny position and heaves the ball towards the basket. It goes in and we all cheer. She squats again and in it goes! Then again and again and they all keep swooshing into the basket. She looks like a small mechanical wind up monkey. Occasionally, she misses one but the rest head straight and true towards the basket. I am crying again but this time it because I am laughing so hard. Morgan's mouth is opened so wide you could fit a bowling ball in it and her face is bright red. People are coming down out of the bleachers and they are counting the baskets out loud- 12, 13, 14, 15, 16 – A tall man with a thick southern accent comes over and whispers to Morgan, “You ought to be ashamed of yourself, you know your sister will have bragging rights on this for twenty years.” 17, 18, 19- then the buzzer sounds. Nineteen baskets in three minutes! Everybody is cheering and giving Sophia high fives. Her face is lit up like Las Vegas. I give her a big hug. “Wow!” I said, “You sure can shoot!”
We went to the bleachers and sat there laughing and accepting congratulations when Mary told us that Sophia's name was being called over the loud speaker. She took off running to the awards table in the center court where she was given a trophy. She had won the women’s division! Cameras flashed as pictures were taken of her with the President of HDSA. She stood there with her Hoop-a-thon shirt hanging down past her knees holding her trophy up high and I was reminded of the story of David and Goliath. I had been feeling hopeless and defeated with little fight left in me and this small child never looked at the size of the baskets or the height of the players. She just wanted to help her daddy get well, and shoot some baskets. My two daughters taught me an important lesson that day. I sent up a prayer of thanks to God, maybe he wasn't all bad.

The blind poodle

The blind toy poodle is annoying me. It is 5 am and I am standing bleary eyed on my back deck watching as my three dogs run out into our large fenced in back yard for their morning duties. The blind poodle safely makes his way down the 8 steps to the yard following the other two- but there it ends. Dashing and bounding across the yard he bangs head first into a tree. For the next thirty seconds he riccochets from tree to tree and it is like watching a sick game of pinball with the sound turned off. Finally he finds a spot in the center of the lawn and lifts his leg high to pee on "nothing". I can't help but think,"You just found six trees!" I shouldn't be so upset but this is so like the rest of my life. Why do the ones I love have to be broken in some weird way?

I think back to when we first arrived at our new home here in North Carolina. At the time my children were 16,13 and 5. It was our first day in our new home and I was taking the children out to explore the town. Alec had opted to stay home and rest. I had forgotten a book that I needed to return to the store and I asked Alec to retrieve it from the house for me. Opening the front door he began to skip, leap, and bound across our front lawn extending his hand with the book in it through the open car window with a flourish.... From the back seat I hear my 16 year old say, "Is he skipping?" I can also feel the weight of the 13 yr olds head as it hits the back of my seat, she is muttering "We will never have any friends;they will all think that my father is crazy." To understand this you should know that before this disease my husband was a dancer and performed in the "Nutcracker" every year with the local Ballet company. But the skipping thing was new. I had noticed it first at the gas station when I asked him to go in and get some drinks. He skipped, both ways. When Alec had returned to the house I realized I had also forgotten my purse. I decided not to call Alec, I went back in myself. On the way out the door I was suddenly hit with an urge and I skipped, leaped, and bounded over the front lawn and opened the car door with a flourish. Both teens looked astonished, "What are you doing?" they chorused. " Now the neighbors won't think your father is crazy, they will just think that our family is very happy."

This morning I am not in the mood to see the humor in this. I call the dogs back in and stand there on the deck sipping my coffee as they arrive. Ofcourse, the blind poodle is last. My papillon always helps him to find the steps by standing at the top barking and scratching at the top stair. She is my only female dog and she is a natural caretaker. My male cocker spaniel sits obediently at the back door his mind on his morning biscuit. A true male. Most times the poodle guided by the papillon makes it up the stairs safely, but the last few times he hasn't. He starts out well at the bottom cautiously taking the first two stairs then all of a sudden he bursts up the last few and falls off the top one. The first time it happened I sloshed coffee all over myself. I thought for sure he had broken his neck, but no, he was fine and made a second attempt which was successful. But I realize this morning that it is time for me to start walking down the stairs to get him. He won't be able to do this for himself anymore. I am sad and it makes me cry and cry. Way out of proportion to the circumstance. It is another loss. But it is just like the losses I am going through with Alec as each day goes by and I lose a little bit more of him. One by one the things that he could once do are stripped away and one by one I pick them up and grieve each passing.

Job Shadowing

My husband follows me where ever I go. Now those of you whose husbands do not have HD probably think I mean that he tags along wanting to be with me or that jealous and possessive he actually gets in his car and stalks me when I leave the house. That is not what I mean. He can no longer drive much less stalk. He follows me from room to room in our house staying a few feet from me at all times. For example, my computer was in the shop all last week so I went to our 15 year old daughter's room to check my e-mail. He followed me into the room and simply stood there staring at me he whole time I was on line. He does not say a word. This was more than 30 minutes. I finally tried to distract him by asking him to please take Morgan's garbage out. This made things worse because he began digging through her garbage deciding that this or that could not be thrown away because it had to go in a different bag or to the recycle bin or maybe we could use it. Morgan returned to her room to begin her homework and saw her father digging through her garbage bag. She looked at me making eyes and hand gestures that pleaded for me to please get him out of there. E-mail time over.

When I was working I just had to tolerate it. Many times I would have to work from home and for the hours I would sit at my desk working on the computer or making phone calls he would sit directly in front of me, not 3 feet away, and silently watch me, sometimes offering helpful comments. "Did you return Gary's call?" "Don't forget to place the order for Peg." Living through me. Participating in life the only way he has left. Sometimes I feel like a medium. Don't get me wrong, I love this man. When we were first married I hated to be away from him. If I had to leave on a business trip I would take one of his shirts with me to sleep in, so I could wrap myself in the smell of him. But this is just weird and sad. I feel so guilty when I finally lead him down stairs and put him in front of the tv and ask him to stay there awhile. Guilty that I am still healthy and can participate in life. So sad because the person I wanted the most to spend my life with can't join me, but just stands silently in my shadow.