Some might have wondered why I haven't been posting or writing here in this forum.
It was all part of my grand experiment.
So, you will be seeing less of me, as the experiment showed me that not being in this forum makes me happier and I accomplish more and feel better.
This place does not build me up. It's sick and dysfunctional and censored. It's crippling to be here, like walking on eggs with crutches. I love many people, but I don't love being here anymore.
I tried, and prayed, and really honestly put my heart into posting for a couple of years.
So...it's been "nice" but I've moved past the hurt of being here and will no longer post to the blog and will only post occasionally to the boards.
The experiment, by the way, was a grand success. I found out who my real friends were, LOL
The other night as we ate dinner, our daughter called frantically on the cell phone. "Mommy!! is our house on fire? I had to pull over to let fire trucks by and I can see black smoke filling the sky. Are you okay?" "Nothing's wrong here," I assured her.
Just then, I heard fire trucks go by and saw three ambulances follow. We had been about to eat fresh strawberries and whipped cream for dessert but all of us at the table jumped up as one and ran out the front door.
We found indeed that black smoke was filling the sky at the house up the street--a house built the same year as ours was, by the same builder. Police wouldn't let me pass to check on the family--a young mom and four kids who are at home during the day while the Dad is at work. I could see them though, standing on the other side of the rescue trucks and the police officer assured us everyone got out.
But I could see her standing there barefoot holding her sleeping baby while the other three kids were comforted by neighbors. I walked through other yards and up and around to bypass police so I could go ask if she needed anything.
"I'm fine," she insisted. "We are all safe,that's all that matters. If a neighbor hadn't seen the smoke, I wouldn't have known what was going on."
Another neighbor had seen the smoke pouring from the attic and called 911 but then went and banged on the door. She was cooking dinner, the kids were picking up toys in the living room and the baby was asleep in his crib.
She and the neighbor got all the kids out and were standing there watching the firemen knock a hole in the roof so they could pour water in. They ran a huge hose from the frog pond at the end of the street and three towns sent tanker trucks. They also filled the attic with some kind of foam to stop the fire from spreading. Many neighbors lined the street to watch. Only a few went over to talk to the family.
Our friend Tom, who is a prepared and practical man, turned out wearing leather gloves and heavy boots and started helping the fire department lay the hose to the frog pond.
I ran back home, grabbed an empty backpack and filled it with beanie babies, fleece blankets, a pack of toothbrushes, toothpaste, soaps and hand wipes, and shampoo and conditioner and put in my phone number. I took a pair of flip-flops too--and gave these to the mom as she was barefoot. My feet are two sizes larger and I figured flip flops would be easier to manage than too-large sneakers.
By this time, the fire was under control and the firemen told her she would be able to retrieve some valuables.
Her husband then came running up the road. He saw me, and hugged me as I yelled "Your family is OK--they are over there with the firemen!"
This family is from New York and have lived in New Hampshire just a few years. They do have neighbors they are close to, who are their age with same-age children so they made plans to stay there for the night. We were to leave at 3:00 am on a road trip to North Carolina so we offered them our house while we are gone, but they decided being with close friends would help the kids cope.
The fire department left at 10:pm and we had to pack, and get some sleep. I had canned strawberry jam and strawberry lemonade earlier in the day and had to wash the floor!
At about 1:30 a.m., I heard something and tried to see if anything was up at the house where the fire was. The trees are thick, though, and I couldn't see anything. It's also a bit far up the road, around the bend. Well, something was wrong--and an hour later, I saw red flashing lights and firemen once more laying hoses. They had had left a thermal imaging camera at the house and this had detected that the fire had started again. By the time they arrived, flames were shooting up. The house essentially is totally gone. The fire started in wiring above the kitchen.
We learned later that the cold foam designed to suppress hot spots from reigniting the fire fooled a thermal imaging camera the fire department had left on site. Thus, they did not know when the fire reignited until neighbors across the street called them.
We couldn't leave at 3:am. as planned because fire trucks blocked our driveway. One of them told me that he was glad the family got some of their valuables out before the second fire. He also said that he wished people would make sure smoke detectors work--and that they would have bug-out bags. He started to explain what a bug-out bag is but I told him I had them ready to go--and he looked at me and said "Oh..of COURSE! You're the neighbor who brought them a backpack full of supplies!"
Finally, the fire truck was moved. I hated to leave, not knowing how this family will cope. But in between packing and leaving, I got an email from Edy's ice cream saying that I once again was a winner in their ice cream party for 100 contest. In that essay I said that I would have the fire department over to thank them for their hard work during the ice storm last winter.
My buddy Angela gave me a great idea. We'll let our neighbors be honorary hosts so they can thank the fire department for helping them--but we will ask the neighborhood to make donations and help this young family rebuild.
One day, you're a teenager telling Mom to quit bugging you. Then one day, you're over 30 and something happens. You look in the mirror and see Mom's face in yours.
Pausing with the hairbrush in your hand, you suddenly see why everyone says you have her eyes, why her friends stop you in the supermarket and do double-takes.
For them, it' s a time warp.
"You're Hazel all over again!" they exclaim. But they don't say much else.
It used to bother me, but looking in the mirror the other day, I felt suddenly glad. I understand now why my old botany professor kept looking at me strangely. He and my mom grew up together, swam in Stevie's pond, stole apples from Barker's orchard. He was sweet on my Aunt Ginny one summer. He never married. I must have reminded him of that.
When I was 30, mom was twice my age, a grandmother of two. Now, I'm over 50 and she's in her 80's--and even though her hair is white, we still have the same eyes and the same things get us heated up.
She could have been anything. Once she dreamed of writing short stories and won a contest. She dreamed of joining the Air Force during WW II but girls didn't do that then. Instead, she joined the Civil Air Patrol and could quickly identify any aircraft. She was just 16 when she graduated from high school and got a scholarship for nursing. She was proud of her new uniforms, and excited to go to school. Only when she got there, they learned she was not yet 17 and sent her home, took away the scholarship.
In those days, kids just out of school didn't stay home and wait to turn the right age for an opportunity. She had to find work. There was no father at home. Her Dad had gone west during the Depression seeking a job. He never came home until 25 years later.
"He never found work and couldn't send for us like he promised and he was ashamed," Mom said. "He missed us growing up."
"I hunted for him and finally found him through social security. He was in Connecticut. He said he was afraid to come home but he did and my mother just asked him where he'd been like he was out on the town for a night and came home late."
I remember that night. I was four. I suddenly had a Grandpa. My Grandma waited nervously on the couch and my mother returned with her father, and Grandma, after asking where he'd been quietly said, "Roy, let's go home." and a whole flood of forgiveness from the family encompassed him just like that.
My mother always was the kind of person who made good things happen, even during bad times. As she grew up, her older brother helped her and her other five siblings finish high school. They survived by inventiveness and growing their own food on the farm. Mom used to trap muskrats and sell the pelts for fifty cents each to help pay the oil heating bill. During the war, she dug graves for two dollars. There were no men home to do the job and she welcomed the extra work.
She used to unravel sweaters and re-knit the yarn into new ones. "We'd embroider roses or flowers over anything with moth-holes in it," she said. "The thrift shop always had sweaters cheap."
Her prom dress did double duty, once covered with nylon netting, another time adorned with tiny bows sewed on. Years later, she found it in an old trunk and angrily tossed it out.
"Got so I hated that dress," she said, grimly.
She also ventured into snow plowing once. "The truck lights went out and it was during the war when parts were hard to get. I was small enough to sit on the hood and hold a lantern so we could see where to plow."
Mom got a hairdresser's license and went to work at a place called Justine's, a place I remember form my childhood, where mom would still go to get her own hair done. When she and my Dad got married, she helped him build a house with $300 down and a Grossman's house kit. The foundation was a foot out of square. My father had dug it by hand. Thirty-five years later, that house sold for $70,000. If they'd hung onto it a little longer, they would have gotten $200,000 a scant decade after.
But she and Dad wanted to live where it never snows, so they went to Florida and grew grapefruit and oranges in the back yard. They had paper routes, and every so often she would threaten to quit and become a reporter. When I was divorced and went to live down there, I was a reporter for the Sarasota Herald Tribune. My father still was a newspaper carrier then and I would hear about it from the circulation folks when one of my stories made front page. My folks would let everyone know! On a slow news day, we'd call my mom and she'd have a story idea. They needed photos of Florida Jays so they called my mom. Her hand with the jay eatiing peanuts out of it was a staple at the paper for decades.
It was hard when Mom had a massive stroke and Dad couldn't care for her. It was hard to see her in the nursing home, harder to see Dad struggling alone. Still, they wouldn't move to New England with me. Dad died in 2005 and Mom came back to New England. She said, "I missed new fallen snow--but not shoveling. I can come back now. I don't have to shovel."
I get to see her every day now. We never run out of things to talk about.
That thought makes me smile as I dig out the old family album. Squinting at old photos taken when Mom was just my age, I'm struck by how pretty she was and I really want to believe I look like her a little.
The last time I went to Wal-mart, I saw a teenage girl shopping with her mother, impatient with her Mom's lack of fashion savvy. I wasn't surprised when she said, "Ma, quit bugging me!" I wanted to say something, but I knew better.
She looked like her Mom, too.
April was Sjogren's Syndrome Awareness month and I didn't write about it as I thought I would. I guess that's because I'm already all too aware of this disease. I have it. Believe me, I'm aware. But I didn't write about it because I was angry at the community here. I've cooled down now and I know the anger wasn't really about anyone here. It was all mine. And the disease I have was part of it.
Around four million Americans have this autoimmune disease. More than 90 percent of them are female. More people in this country have Sjogren's Syndrome than Multiple Sclerosis. So why all the ignorance about it? My theory is that because it mainly attacks middle age women, it hasn't gotten its share of research dollars or attention from the media. Or maybe it's because the description doesn't sound so bad. The main symptoms are dry eyes and dry mouth and aching joints. It doesn't sound too terribly bad, right?
Be that as it may, Sjogren's Syndrome was recently added to the Social Security Administration's list of diseases that make one eligible for disability. And, if you go to websites with support message boards, you can read the stories of people who can hardly get out of bed some days, people who have to ration their energy like it's gasoline during WWII.
"Sjogren's syndrome is an autoimmune disease. Autoimmune diseases are characterized by the abnormal production of extra antibodies in the blood that are directed against various tissues of the body. This particular autoimmune illness features inflammation in certain glands of the body. Inflammation of the glands that produce tears (lacrimal glands) leads to decreased water production for tears and eye dryness. Inflammation of the glands that produce the saliva in the mouth (salivary glands, including the parotid glands) leads to dry mouth and lips." says the Medicinet website at http://www.medicinenet.com/sjogrens_syndrome/article.htm#1whatis ://http://www.medicinenet.com/sjogrens...e.htm#1whatis ://http://www.medicinenet.com/sjogrens...e.htm#1whatis ://http://www.medicinenet.com/sjogrens...e.htm#1whatis
What that means is your eyes feel like Lawrence of Arabia marched through them and that the sand of a thousand camels has clogged your tear ducts. Your eyes feel gritty all the time. It means that your mouth is so dry that water doesn't make it feel better. It means you have a thirst that is never quenched. It means you sometimes choke swallowing dinner. It means that you sometimes feel like you are burning in the core of your body and that you need to cool down or you're going to melt down. It means that you are exhausted some days when the fatigue doesn't go away even with a bit of rest. It means that you wake up tired after a full night's sleep some days.
Dry nose, throat, and lungs, vaginal dryness, swollen salivary glands, and fatigue are other hallmarks of the disease. . More severe cases can affect other parts of the body, such as blood vessels, the nervous system, muscles, skin, and other organs. This can lead to muscle weakness, confusion and memory problems, dry skin, and feelings of numbness and tingling. A few cases develop into lymphoma.
Oh this is just one lovely disease. It hits you when you are in middle age, and already facing issues about aging and menopause. Then, it ramps up the process, drying your skin, attacking your body. Like all immune diseases, this is a disease where your body turns on itself. Talk about betrayal. One day, you are able to do it all and then slowly, you have to chalk stuff off the list of things you can do until it scares you. What will it be like when you turn 60, or 70 if it is bad now, when you're 50?
I wonder that often. I try not to, but I do.
There is no cure for this disease that robs you of your self-esteem and energy and steals many of hours of your life that you could really, really put to good use.
Still, I'm one of the lucky ones. My disease was diagnosed quickly by a really good doctor. There are stories of people whose disease wracked their bodies but who were not diagnosed for years and years. I had the disease probably about a year before it progressed to the point where I realized it was more than itchy eyes from allergies.
I realized it was time to see the doctor when my father died and no tears fell down my face as I cried. Not one single tear. This is unusal for me because I'm the type who tears up just looking at photos of cute kitties. I had been worried about increasing joint pain, too. I just thought it was old age creeping up on me. As for the dry mouth--I feared it was the thirst of diabetes, as that disease runs in my family but I had escaped it up to that point.
Sjogren's Syndrome is often diagnosed by rheumatologists. My regular doctor sent me to one. Dr. John explained it all to me. He decided from my lists of symptoms that I do have Sjogren's and determined that I have primary Sjogrens, which is a good thing because secondary Sjogren's is more complicated and goes with diseases such as rheumatoid arthritis, systemic lupus erythematosus ("lupus"), polymyositis, and some forms of scleroderma. Approximately fifty percent of people with Sjogren's syndrome are described as having secondary Sjogren's syndrome.
It's complicated to diagnose this disease. It requires extensive medical history, blood tests for antibodies (but often the antibodies don't show up, so this test is not reliable) The gold standard of tests is the lip biopsy where a doctor slices into the lip to take out some salivary glands and examine them to see if they are damaged. My doctor suggested I do this and I went to the place he suggested as this is supposed to be something that can be done on an outpatient basis.
The doctor I saw for the biopsy didn't want to do it. I am allergic to corn and wheat and a host of other things. He ridiculed me and said it was stupid to bother with the procedure because even if I have the disease there is no cure. He was a jerk. I walked out and called the reumatologist who had recommended this guy. He sent me to another doctor. Her name was Dr. Troublefield which cracked me up but she was a dynamic lady, a former discus thrower and when she learned my daughter also throws discus and was in the waiting room, she had the nurses page her and bring her in so she could meet her.
We hit it off. Dr. T was ready to do a biopsy in a few weeks but then when she heard about the allergies to corn and wheat, she realized it would be difficult to find pain killers and such that I could take afterward. She reluctantly told me it would be best not to do the test, and just continue on the premise that I have the disease and treat the symptoms. My primary doctor pointed out that it wasn't like I HAD to have the biopsy as I would if cancer were suspected, so why go through the horror.
Scary stories on the support boards at a site called Sjogren's World made me glad I didn't do the biopsy. Some folks had horrible scar tissue and swelling. Some got infections. Maybe it was just as well I didn't have to do this gold standard test.
But it was still tricky to treat my symptoms. Many eye drops contain corn-derived products. I had tried many OTC types only to discover that they blurred my vision or turned my eyes into swollen, red orbs resembling Halloween mask eyeballs. The ophthalmologist suggested I take flax seed oil supplements and he prescribed Restasis. Both things worked a miracle. Within a month, I found I had a few tears again when I cried. Taken faithfully, this drug has restored my vision and my eyes. I'm grateful. I'll have to take it the rest of my life. But I'm totally willing to do this. I thought I was going blind at one point. I could only read large print. Now, I'm back to reading everything, even the fine print.
Most people with Sjogren's can use mouth sprays or suck on sugarless candies to keep their mouth and throat moistened. I can't. All of them contain corn products, corn sweeteners such as xylitol or some other corn-derived sweetener. I can have candies that just contain sugar--but they rot your teeth and people with Sjogren's already are prone to tooth decay from lack of saliva.
So, they had to get a compounding pharmacy to make troches, or lozenges that I could suck on to stimulate saliva. They taste awful. They contain a lot of salts. My doctor said that I could suck on small pebbles to stimulate saliva. I decided on another creative method. I would look at glossy cookbooks in the library or at luscious food photos on the internet and discovered that even reading about recipes and imagining how they would taste helped stimulate saliva production. There are drugs, such as Salagen, that can stimulate saliva flow. But guess what? One of its main ingredients is corn.
Non-steroid anti inflammatory drugs help lessen the joint pain and keep down the inflammation in eyes and mouth. I don't need to take these every day--and I'm lucky that Aleve caplets contain no corn products. I take Aleve as needed, which means I can sometimes go for a week or two without it but then I have a flare up of Sjogrens.
Sjogren's waxes and wanes, with some flare ups lasting just a few days and other times several weeks. I have learned to rest, to pace myself, to be more patient because of this. I used to rejoice during the non-flares and try to do too much. I have since found reasonable pace at all times works best.
DMARDS (disease modifying anti-rheumatic drugs) are also known as SAARDS (slow acting anti- rheumatic drugs) may be used to treat severe cases of Sjogren's syndrome. As their name might suggest these medications take some time to be effective, up to several months. I don't need these--yet. However, I have had to search out corn-free vaginal lubricants and moisturizers and got recipes from the compounding pharmacy for my own mouth moisturizer spray. And, I go through gallons of skin lotion because the dry skin is worsening.
Sjogren's is different for each person who gets it and so far, my disease is slowly progressive, not rapidly progressive. There are stretches when I feel fine and begin to wonder if I really do have it! Just when I have those thoughts, it flares up in earnest--like today. I can feel the slow burn starting in my mouth and going down my throat. I can feel it in my vagina, too. Like I've been burned there. The relief will come when the two Aleves I just took start to work, and when I drink some more.
There are days when just sitting in my chair with my cat is enough for me to do. I do more handwork on those days. I cross stitch. I clip and organize coupons, I read. I often joke that this disease doesn't kill you, it just sometimes makes you wish it did.
Life is still a gift we don't return--even with this stupid disease I contend with. I'm not in it alone. Nearly four million others have it--and I guess we would like others to be more aware of it, and more understanding. It's not all in our heads. It's a real disabling disease. It's just that sometimes we are okay and sometimes we are far from it.
When I don't post on the message boards, it's because I'm having a flare up and I'm scared of sounding stupid--or angry. The component of this disease I don't like to think about or admit is that during severe flare ups, it can cause cognitive difficulties or brain fog. It makes it hard to think. It feels frightening and confusing. I have discovered that when I post to the boards during those times, I am often misunderstanding others' posts and then ticking them off. Or they think I'm angry sounding when I didn't think I was.I have learned that the anger comes from having to make so much extra effort to be "normal." I learned I AM angry I have this disease and I found from the feedback on the boards that I had to admit this to myself and deal with it better or it was going to spill out in ways that would hurt everyone around me.
If I'm stuck having this, at least I'm learning from it. Perhaps in some way, I've also helped others gain awareness of Sjogren's Syndrome and to have some understanding for those afflicted with it.
If I've donethat, I'm not angry anymore--well okay, I am, but I'm working on it.
I'll say it here, right out loud. I never went to my prom. Neither did my husband. We, two self-proclaimed geeks, have a social butterfly daughter. Pretty, athletic, smart and funny, this girl has always easily made friends, won sporting events, and has gone through her life embracing everyone and everything with a caring heart. There's an easy explanation for this. She's adopted. She didn't get the double geek genes from her parents. Lucky escape.
So it was some months back that she first broached the subject of prom. It was February and the love of the moment lived across the state. He was some guy she met at a track meet. Our girl is a medal-winning discus thrower, nationally ranked. She had found herself a thrower boyfriend and approached us with the the idea that she'd like to attend her school's prom with him.
Thus, we trekked on over to Portsmouth, NH to someplace called Madeline's daughter and began the search for the prom dress. She found one--cost $400. I said no. I said no, even knowing that having a dress like that hanging in your closet could boost your self-confidence for months. I said no, even when the grandma offered to buy it. I said no even when the kid offered to pay half. I just couldn't see us spending that kind of money on a dress. Not in these times. Well, not in any time, actually.
So we searched and found a pattern similar to the THE dress and I found fabric on ebay that ALMOSt matched the fabric on the dress. The waist of the store-bought dress came to a point and was lined with rows of bugle beads. The fabric was zebra striped with a lovely border of tropical flowers on the bottom.
The fabric I found was so much like the dress...except no border of tropical flowers. It had flowers randomly scattered across it, though, in colors of pink, yellow and blue. Thank goodness for ebay. I found a zebra-striped beaded bag on ebay for ten bucks. For the beaded waist, I spent many nights sewing bugle beads with alternating stripes of black satin ribbon. It looked pretty good when I got done.
We found shoes at Payless on clearance--and got them even further marked down because one of them needed some glue. Add an evening stole original price $50 from Coldwater Creek that I got for $7.99 and she had the outfit ready to go. A friend's mom did her hair. She bought a hair clip and we glued feathers to make a nice little hair decoration, and since the theme was midnight masquerade, I found myself gluing similar feathers to make a matching mask--the elegant kind on a stick for evening wear.
Even as I prepared, I worried about the whole idea of my daughter going to a prom. My neighbor had remarked the other day that it was like putting your name in a death lottery. "Someone always gets killed doing something stupid prom night, " she remarked.
Our community is already reeling from a fatal accident three weeks ago in which two 16-year-old classmates of my daughter were killed. The driver of the car is still in critical condition and doesn't know his best friends are dead. We've already been talking about driver safety, not speeding, and remembering to wear seat belts. We'd attended their funerals and I'd held my daughter's hand as she cried and promised me to never drive too fast.
But prom raises the specter of underage drinking, which usually happens at the after-prom parties. We worried about the parties Katy would decide to attend. We were concerned about the distance her boyfriend was going to have to drive.
And then.... a month ago, she broke up with the boy. She announced, "Don't bother finishing up the dress, mom. I'm not going." So I left it laying on the sewing table and didn't finish it.
But three days before prom, she told me, "I decided I want to go, Mom, can you finish the dress?" She asked a friend of hers, a boy from a track team in a neighboring town, but not a thrower, a runner. They weren't going as a romantic duo, just as friends who wanted to have fun. They each paid for their own ticket. This wasn't a real date, they insisted. (He did give her a good night kiss, though, I peeked, LOL)
So there I was, scrambling to put the finishing touches on the dress on Friday afternoon for the Saturday prom. The straps on the halter dress were not quite right and it took me four hours to get it right, then re-sew the little beads we had picked for the trim. As it was, I still needed to make little thread loops for some buttons on the back on Saturday morning.
Well, the evening long-awaited became a day long-to-be-remembered as I snapped photos of Katy and her friend--and they headed off with another couple of friends to the nursing home to see my mother before they headed to prom. The staff and residents at the home were thrilled to see them, said they looked like movie stars, and clapped as they walked down the hall to mom's room.
Katy was to be home by midnight --and even though the prom ended at 11, she and her friends had time to go to an all-night diner and have pie on the way on home and still make it here by then. They were tired and happy and her date called his mom to say he'd be home soon, which warmed my heart toward the young man considerably, I must add.
When he left, I asked Katy about the after-prom parties. "Mom, I didn't make myself available for those. You know what they do at most of them--and I know for a fact that there will be alcohol at many of them and no parents at some of them. So I didn't go. It was more fun going out for pie with my group."
She told me about the crowds of kids and how everyone was dancing with everyone else and laughing so hard. "Mom, the principal told me I looked fabulous and I danced with my science teacher Mrs. Beach. It was crazy and it was great and I'm exhausted!"
With that, she headed off to bed and was soon asleep. But I, all keyed up with the worry, and not able to calm to down, sat for a while in the living room sipping chocolate soy milk pondering how blessed I am to have a daughter home and safe after the prom--home and safe and happy.
"I'm tired and I'm living in the last half of my life." Those words aren't mine. They belong to my former English Composition professor and they appeared in an essay he wrote about sitting in a cafe in Paris contemplating his growing older. For some reason they stuck in my head.
And for another reason, they sometimes pop into my head. Like today.
It's been a rough month. Sjogren's Syndrome makes me tired enough--and April is Sjogren's Awareness month, by the way. So I'm going to be talking about it at some point. You were warned. My mother had bronchitis so bad she had to be hospitalized. Long nights and days at the hospital watching her oxygen machine got me thinking that life is indeed short.
It was not long ago that my mother was a lithe lady in high heels wearing hat and gloves with her full skirted dresses as she drove toddlers to the store in her 1945 Buick. Now, the toddlers are senior citizens and she needs a wheelchair. Someone has to pick her up and transfer her to the car. She's paralyzed on one side by a stroke. (And May is National Stroke Awareness, so I'll be talking about that at some point, too. )
So it got to me today, as I tried to not be anxious about the passing of time and its effect on those I love. I'm tired. I'm living in the last half of my life. I'm even a little depressed lately and don't like leaving the house anymore. I thought of my professor and wished I could have these thoughts in the City of Light like he did. I could use some distance from my life. Maybe I could even use a new perspective.
For perspective, there's nobody better than my mom. Apparently seeing life from a motorized wheel chair makes a person bolder. Or maybe it's the stroke. It is said that stroke survivors often are more impulsive--something to do with brain damage. Their personalities can even change. But my mom is still the same--only enhanced. It's like Mom on energy drinks or something. She says the most outrageous things that seem funny but really are like cold buckets of truth tossed in the face.
I told her how I'd been feeling, dragged out, tired, finished, washed up. And she laughed. She laughed long and loud and had to get a drink of water because it set her coughing.
"Look around dear, " she said. "I can't even get out of my chair without help and let me tell you honey, I am not washed up, finished. I'm just tired. But if I'm tired, I take a nap. I have to ASK someone to put me in the bed, but if I want to nap, I ask. You, you don't have to ask. Go take a nap."
It reminded me of the day in the hospital when my daughter, worried that Grandma was dying, texted me and asked if this were true. I told mom and she said, between bites of baked salmon, "Tell her that anybody who can eat like I am is not going to die today!"
So, in the grand tradition of my mom, I am going to make a really good lunch right now and appreciate every single bite. Then, I am going to take a nap. When I wake up, I'm going to go see her. I'm going to bring her some tulips and daffodils in pots and plant them right outside her window. Thinking of it makes me feel better already.
After all, I'm tired and so is she. But neither of us finished. There's some fight in us yet. We're not beaten. Just beat. And as for living in the last half of my life? She's 82, claims the first hundred years are the hardest, and points out that "He who endures to the end will gain everlasting life."
Nothing like a little bucket of cold water in the face to refresh a gal, I always say. Now...to lunch! And beyond!
The ides of March for me have been bad.
March 8 seems a diabolical anniversary. On this date, in 1973, I got engaged to someone I thought was a wonderful, God-fearing man. I soon learned he was domineering, tyrannical, and abusive but I thought I had to stay with him anyway because the church said I had to and my minister said it was God's will that I do. God hates a divorcing, they told me. So I resolved to make it work.
Within 6 years, on March 8, I had cancer surgery for the first time. Five years to the DAY, on March 8, 1984, I had cancer surgery for the second time.
When I woke up in my hospital room, there was sitting there a lady from my mother's church who had been a nurse. She was crying and she came over and took my hand and asked me how I was. In a few minutes, I learned why she was crying--my husband had come and told her some news he was soon to share with me. She was still holding my hand when he came into the room to see me. He looked grim. I figured the cancer was so bad I was dying. I steeled myself.
"I can't do this again, " he said. "I'm getting a divorce. I'm not going through this cancer crap anymore." and he walked out. I never saw him again until August, in divorce court. Even then, he never would look me in the eye.
The lady from my mom's church stayed with me for hours and I think she was more upset than I was. She sent others from her church over. My parents were by then moved out of state, but mom had sent all of her friends to see me and help me.
I was a college student. I was almost done with an Associate's degree. I was an intern at the local newspaper. But now I was going to have to add divorce and chemo to my schedule.
Somehow, I did it. I finished first in my class at the community college, was named graduation speaker, and won a scholarship to Boston University. I didn't take any incompletes.
But it was hard. It was harder than I thought to break up a marriage that wasn't all that wonderful to begin with. It was hard to be sick and to be alone. It was hard just to learn to rely on God and forge ahead. I was scared. I was lonely. I was, before this, afraid to call up and order a pizza. I had stayed at home most of the time because I had been poor and had no car. I sold stained glass things at flea markets to pay for my community college tuition. The only full-time jobs I'd had were working for my ex's relatives. At one job, I learned how to be a florist and worked in a greenhouse.
So, with two years of college left and chemo to get through, I went to my newspaper editor and begged him to hire me full time and let me work around my college commute to Boston for classes. He readily agreed when I suggested he make it a trial basis, because he hesitated at first. In two months, he said he was glad he'd done it and I even got a raise and my own column which became popular enough for me to get hate mail and weird love letters asking me out on dates.
The whole experience cured my shyness. I figured that if I didn't speak up then, I could die and nobody would have known I was here. So now I say what I mean and I mean what I say and apologize later if I got it wrong.
I thought of all this today as it is now 25 years that I am cancer free. I often wonder how this could come about when one doctor had given me three months to live. It's been an interesting "three months." I've worked some big and small newspapers, fell in love with a man who turned out to be even more wonderful than I hoped, and became an adoptive mom to a pretty great kid.
But somehow, on this date, I feel a little sad--or I used to. My family changed it for me greatly. On this date, they bring me flowers, they call it "Mom's Life Day" and they take me to dinner and tell me they are glad I'm alive.
On this day, 25 years later, we are headed to Brown University in RI for a weight throw competition for Katy--and we are going all be together enjoying the whole day. So on this date, which has been the anniversary for a lot of pain, I'm feeling pretty blessed.
For the last decade or so, the pain has been erased and replaced with memories of good times. So I'm off now to make a new one, and bury that old horror just a little bit more.
Happy Life Day!
Sometimes a phrase gets stuck in your head. It's like having a tune such as "Yellow Submarine" playing in your brain for weeks. Someone I once knew calls this a "mind worm." It happened to me again this week. The mind worm struck.
The phrase in question was something the neighbor of a missing girl told the press. "When something like this happens, it reminds you of the dangers of ordinary life."
My ordinary life is dangerous, all right. It always has been. When I was two, my brother opened the car door and shoved me out. Yes, I lived. My shoulder was dislocated, though. When I was seven, my brother made me cross a railroad bridge over a waterfall, a bridge that had no side rails and seemingly wide gaps with nothing under it between the rails. That was dangerous.
When I was 9, my brother and I caught the thieves who had stolen my mother's Sierra Gold '57 Chevy. Only they got away again while we went to call the police. Or they would have, if I hadn't stood in front of the car. They swerved just in time and sped down the road where my father, on his way home, saw the car and followed it. Realizing they were being followed, they turned back, got panicked, and struck the side of a building, smashing the car. Their ordinary lives were really dangerous.
When I was 10, my brother almost drowned me. I'm not sure if this was intentional, but given the car incident and the bridge thing, it's pretty suspicious.
When I was 12, I got my hair caught in a mail slot. At 13, I was riding a bike and nearly got hit by a bus.. And when I was 22, I got cancer. At 27, I got it again. At age 28, I became a newspaper reporter and started doing deliberately dangerous things such as interviewing kidnappers in jail and going out late at night to accidents and fires.
These are the dramatically dangerous things in my life. Let's not forget the countless times I've nearly dropped the hairdryer in the sink or almost set the house on fire forgetting a pan on the stove. Should we include the time I broke my toe answering the phone? Or isn't that dangerous enough? What about last week when I was carrying the ash bucket and tripped, knocking my head on a wooden box and slamming my shoulder into the floor?
This phrase "danger in an ordinary life" has been haunting me as I try to chalk up the ones I've experienced and begin to wonder what other dangers I could be headed into.
There was the danger of divorce in my life. There was that feeling of stepping off a diving board into an empty pool as I got a full-time job for the first time and learned to live alone, to create a life by myself from scratch. But that turned out right. It wasn't really dangerous to do that. It just felt like it was.
Then there was another walking–off-the-edge moment of realizing I'd fallen in love again. That seemed dangerous at the time, too. But it turned out okay.
Now there's super germs, food borne pathogens, worldwide terrorist cells, a trashed economy, and potential social unrest looming on the horizon. Those are dangers, aren't they? I don't know, maybe I should just stay home---wait, that's what I'm doing! And I still burnt myself on a coffee pot, hit my head on a shelf, and dropped firewood on my foot. I guess it's true, then. Ordinary life IS fraught with danger and anything can happen at any time as we go about the normal, sometimes numbing order that shapes our days.
I thought this should bother me more than it does. But I was wrong. "Life is good" proclaims a T shirt I saw in the supermarket. "Each day is a gift" says a magnet in the Hallmark Store. I had giddy thoughts of making one that said, "Ordinary life is dangerous! Life is Good! Each day is a gift! Don't burn yourself!"
But I chuckled, remembering my father telling me if we hadn't been born there wouldn't be such a good chance of dying. His conclusion was remarkably similar to the one King Solomon came to. "Do what you can, while you can and honor God while you do it."
So as I head off to do the laundry with "Yellow Submarine" running through my head, I decide that mind worms aren't too bad. They aren't even mildly dangerous although they could be considered part of ordinary life, which IS truly filled with hidden horrors, blind driveways and dangerous detours.
So how bad could things be? Dangerous! Yes. But we're in it together. That thought comforts me as I contemplate an unknown future. Life is not more dangerous now. It's always been dangerous. It's always been a shaky proposition, this thing called survival and those who make it aren't any more special than you and me.
Ordinary life? Sure I laugh in the face of danger! I got up this morning, didn't I?
And come to think of it, so did you.
I'd say we're off to a good start here. Just please; never play "Yellow Submarine" within 12 yards of me. You know, mind worms.
Beeeee Yourself!" says the genie to Aladdin as he woos his princess. "Just be yourself!" moms urge their kids as they head off to the new school, nervous about making new friends. "Don't worry, just be you!" My Dad used to say when I'd ask if I looked okay.
So it hit me the other day, that lately I don't feel like myself, what ever that means and I'm having trouble being something indefinable.
Just what does it mean to be yourself?
Father Edward J. Flannigan, the Catholic priest who founded Boys Town, an orphanage for boys that is now a center for troubled youth who said, "I've never met a bad boy." He was, perhaps, speaking of the inner person he could see in each child, I'm not sure. Bad boys? I've met plenty. And some of them wanted to date my daughter.
I digress. I was talking about the inner person. I'm not sure I believe in the inner person any more than Dr. Willard Gaylin, clinical psychologist and author does. "A man may not always be what he appears to be, but what he appears to be is always a significant part of what he is," wrote Gaylin. "A man is the sum total of all his behavior."
So it got to me, this idea of being myself because sometimes I think the inner me is better, kinder, gentler than the one that often appears during my days—irritated, tired, worn out, ticked off at the political state of my country, and sometimes even grouchy on message boards. Maybe Gaylin is right and there IS no inner me—just another aspect of the same old me, the me who is a total of all that I do, whether it is kind or hurried, or abrupt or patient. Perhaps what we are inside is simply another view, but not a truer one.
I've always believed that human beings are multi-faceted like a gem and that how the light hits is what is highlighted. Some people are good in a crisis. Their noble side comes to the fore and lets the women and children first off the sinking ship. Others rape or steal inside the hurricane shelter, seeing fellow sufferers as prey instead of people.
If I think I'm evil and I work very hard to hide it, to cultivate a persona of gentleness, kindness and courtesy and then die at 100 years old relieved to have kept the secret all my life, would I be welcomed into the Kingdom of Heaven? If others perceive me as good, am I good? If the people who read blogs and message boards call me silly or stupid, am I? If someone thinks of me as self-centered, does that make me so?
It was philosopher Immanuel Kant who said, "I have no knowledge of myself as I am, but merely as I appear to myself." But our knowledge of ourselves is not solely solipsistic. We get inklings of how others see us by their responses to our words and to our actions. Or sometimes, we really have no clue because they, perhaps wisely, don't tell us.
We've become used to the Hollywood style of movie character villains with hearts of gold. We all know the anti-hero; the despicable one in the story who somehow charms us the way the troublemaker kids in classrooms are often the teacher's favorite. I'm the straightforward type, though. I don't want to know that Hitler loved flowers and puppies and was a sensitive artist. It wouldn't redeem him as a human being. I don't want to be told that he just wanted what was best for his country. That kind of information pales in light of his deeds. His inner life couldn't cancel out his deeds.
I've often apologized for misdeeds, tried to explain. I've come to realize that reasons often don't matter to people. They can't see beyond what you have done or what you have said. And why should they? The inner person is not subject for perusal, for excuse or exoneration, for judgment or approval except by God who sees all.
The inner person, the "real me" is just some fantasy that has no real standing. So the cool-headed teenage Judy who leaped out of a car that had just crashed and dropped a dime into a nearby phone booth to be the first to call in the accident might have nothing to do with that same girl who was afraid to call up and order a pizza. And the Judy who mercilessly questioned a board of health member guilty of suppressing evidence to the public might have little to do with the one who took time off from work to give a boy with AIDS a ride to the doctor because his family disowned him when the newspaper ran a story about his ordeal. Then again, the lady who got mad on the message board because someone hit her hot button surely could not be related in any way to the one who cheerfully takes the cat to the nursing home or who goes to daughter's track meets even if she's exhausted—could she?
I guess Gaylin said it best. We are the sum of all we do and say. "Those character traits, those attitudes, that behavior—that strange and alien stuff sticking out all over you—that's the real you!"
. Much to my chagrin and my delight, I realize that no matter what I'm doing or what I'm pondering, I'm being myself. I don't need to think about it anymore. I just have to get on with it.
This is Burnie, the cat who cans. LOL
He likes it when I organize storage or clean shelves. He thinks I do it so he can have a new spot.
Aside from this, Burnie is the cat who follows me everywhere and is involved in anything that I do in this house.
As you see, I was moving over the pears to make room for some apple sauce here. But Burnie had other ideas.
I should add here that Burnie is really named General Ambrose Burnside. (My husband named our cats after Civil War Union Generals. Burnie's brother, Mac, is named after General George McClellan.)
This is a Civil War fifer. It's my dear hubby, John. Yep, that makes me a fife wife, LOL
Playing the fife isn't easy. The first lesson includes learning to get a sound out of the instrument. This can take weeks in some cases. It is said that if you can get a sound out of it right away, you have talent as a fifer. That's not entirely true. Both John and I were going to do fifing together. I could get a sound out of the thing immediately and the fife group was impressed mightily. However,I couldn't play it because I'd run out of breath due to allergies--and we didn't know it at the time, but I was developing Sjogren's Syndome, which made me really, really tired. So John's the only fifer in the family but I get to march in parades anyway, with the civilians. And you know, that's not so bad, either. I figure that I represent the women of the Sanitary Commission, or the nurses, or the viviandiers who also served on the Civil War battlefield. Besides, I do like my hoop skirts, haha!
And this is Katy, scrunched down hugging a little pal.
This is an experiment -- I'm not used to blogging. It feels strange. I don't know if I'll keep up with this. Anyway, it's good to be in the new message boards and although I am fighting Sjogren's Syndrome brain fog today, I am learning the ins and outs of the place.