Tag Archive | frustration

When Disappointment Darkens Your Door

unhappy faceHow do you accept disappointments? Do you have a tantrum like a two year old? Do you yell at someone? Or do you swallow the hurt and deal with it another day?

Let’s face it. Life usually doesn’t fulfill our every expectation. In fact, I have come to the conclusion “life” finds way to stand in the way of most things these days.

Today Ken was supposed to go to his harmony club, and I had plans to see a friend. I haven’t seen her in a couple of weeks, so I looked forward to reconnecting with her. BUT — When I heard Ken hit the bedroom floor, I instantly knew my plans for the day were dashed. I jumped up to see if he was hurt, and God willing he wasn’t. I swear that man has a legion of guardian angels who lay on the floor and break his falls. He hardly ever gets hurt. For me — not so much. About three months ago I leaned over in my office chair to pick up a paper from the floor — and WHAM! The chair slid out from underneath me, and I landed on my tail. I struggled to get up, and for at least a week, I felt like a kid who got hit with a wooden paddle. Anyway, I digress . . . Back to disappointment.

As soon as I expressed my disappointment — like a three year old — not a two year old — I am making some progress on this journey, I hated myself. Here the poor guy is struggling to pull himself up to stand and get into his wheelchair, and I’m cranking about my plans changing. What a bitch, right?

Well, yes. I’m a bitch –sometimes. But I never understood why a crabby women is named after a female dog. There I go again  . . . digressing.

I think it is important to express anger in a controlled way. Just like every process, care giving has it’s frustrations and disappointments –not to mention fear of what else is down the road. I know where I am with Ken is pretty stable for now, but the unknown future scares the life out of me. People say I shouldn’t borrow trouble. And they’re right. I shouldn’t think about what MIGHT happen and I should deal with the challenges as they appear. But that’s easier said than done.

When I’ve taken the appropriate amount of time to digest this disappointment, I will be my old self again. I’ll wear a smile and when asked how I am, I’ll say, “I’m fine.” After all, most people expect that response. They certainly don’t want a blow by blow of a disappointment that only changed my plans.

Knock, Knock, Knock

Many nights I sleep on the sofa. This is becoming more of a normal occurrence because many nights my arthritic hip seems to need a softer surface than our bed can provide. I really don’t mind resting on the sofa because I watch television to fall asleep to the “white noise” of a monotone narrator. I actually chose what I watch with that criteria in mind. But Ken finds the television keeps him awake, so this is the compromise I made on those sleepless nights that come often.

At 1 a.m. – just a short time after I fell asleep, someone pounded on the door. I sat up and shook the cobwebs from my mind. Flashing red and white lights slipped through the vertical blind and I quickly realized Ken must have fallen and pressed his life alert button to get some help. Yes, the fire department was once again on our doorstep. I opened the door to four burly men who had Ken in his wheelchair in a couple of minutes and saved the day once again.

I was so shaken by the situation I’m afraid I was not kind. I think my crabbiness with Ken was due to the fact I had just fallen asleep and now I had to clean him up from a failed trip to the bathroom. I hated myself for yelling at him. It wasn’t fair to him. He didn’t ask for M. S., but then again, neither did I.

In thirty minutes, Ken was clean and safely tucked into the bed, and I was alert and wide awake. I had to start the whole process of getting back to sleep on the sofa. Ernie jumped up into one of the recliners and the house quieted down. After six or so sound hours of slumber, I woke to another thud. I dragged myself up and trudged down to the bathroom to find Ken laying on the floor. Only this time, I was calm and patient.

I’m telling you this as a kind of confession for my bad behavior. I’m also sharing with those of you who might beat yourself up for being cranky with the person you might be taking care of. We all have our limits and last night for me was just too hard. I’m comforted by the fact Ken doesn’t hurt himself when he falls because as he says, he tries to ease into the effects of gravity. Little does he understand watching him struggle to command his body to stand is torture on both sides.

All we can do is roll with the situation. Pray for a better day and enjoy the good times when they present themselves.

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APPLE PIE AND STRUDEL GIRLS – BOOK 3

Chapter 29

Budapest, Hungary–December 1940—Heidi fell into a comfortable space with the Rabbi and his family. The past six months sped by, and Heidi finally got used to the huge number of people who came and went as they made their future plans to save their lives from Nazi tyranny. Heidi was the only gentile ever in the house for any length of time.

David, Ruthie, and Jacob adjusted well. They enjoyed playing with the Weismann children. They stopped asking questions about their parents and called Heidi “mutter” most of the time.

“Heidi, will we ever be with Father again?” David asked one night as she tucked him into bed.

“I hope so, sweetie.” Heidi said.

“But I want to know for sure.”

“I cannot tell you for sure. The world is a very dangerous place right now, and your father does not realize where we  are. He would be happy we are safe.”

“That is why we came to the Rabbi’s house?”

“Yes. We are very lucky Fritz encouraged us to come here.”

“I wonder how Fritz is.”

“Me, too.” Heidi said as she looked away. “But now is the time to sleep, my sweet boy. Do not worry about things you cannot change.  As long as we are together, we will be safe and happy.”

Heidi blew out the candle and descended down the stairs to her room. The Rabbi freed up another room in the house, so Heidi could enjoy some privacy in a room of her own. She stuck her head into the library where the Rabbi always studied after the activity of the house simmered down. “Pardon the intrusion, Rabbi. I just wanted to say goodnight.”

The Rabbi looked up from his book and witnessed a troubled look on Heidi’s young face. “Something is wrong, Heidi?”

“Sometimes life is so difficult-,” she couldn’t finish before she choked on her emotions.

The Rabbi waved her into the room. “What is bothering you, child?”

Heidi took a seat next to him on the sofa. “Sometimes David’s questions are hard to answer. He is such a smart boy.”

“Yes, the smart ones are the challenging ones.” The Rabbi smiled. “Is that all that is troubling you, Heidi?”

Heidi confessed, “I guess I am a little homesick Rabbi.”

The Rabbi looked at her through his rimless glasses. “Of course you are, dear Heidi. You are too young for all the responsibility you assumed. I want you to know I think you are one of the bravest people I ever met. To protect three orphaned Jews at this time in history is amazing. You inspire me everyday.”

Heidi smiled. “I did what God asked me to do, Rabbi. The children need me.”

He raised his index finger. “Yes. But do not forget about yourself as you take care of them. Now, how can I help you?”

“This may sound crazy to you, Rabbi. But I miss the festivities of Christmas. I miss the Christmas tree most of all.”

He stroked his long white beard. “I understand.” He paused. “We will celebrate Hanukkah in another week.”

“Hanukkah? I never celebrated Hanukkah–only Christmas.”

“Let me tell you the old story which has been carried down generation to generation. Hanukkah dates back to more than twenty-one centuries ago when the Syrian-Greeks ruled the Holy Land. These people insisted the people of Israel assimilate into their culture and leave their religion behind. Against all odds, a small band of faithful Jews defeated one of the mightiest armies on earth and drove the Greeks from the land. They reclaimed the Holy Temple in Jerusalem and rededicated it to the service of God. When they sought to light the Temple’s menorah, they found only one cruse of olive oil the Greeks didn’t contaminate. Miraculously, that one-day supply of holy oil burned for eight days, until new oil could be prepared under conditions of ritual purity.”

The rabbi studied Heidi’s face as she searched for something in her religion which was similar to the Jewish holy day. “It’s a preparation time? We celebrate Advent to get ready for the birth of Christ. Is that why eight candles are lit on the menorah?”

The Rabbi smiled. “Yes. We light one candle on the first night, two on the second and so on until all eight are lit on the night of Hanukkah. Our daily prayers offer praise and thanksgiving to God for delivering the strong into the hands of the weak, the many into the hands of few, and the wicked into the hands of the righteous.”

Heidi nodded.

The Rabbi continued to explain. “And like Advent and your Christmas, we prepare special foods during this time. We eat latkes.” He searched for the right description. “Latkes are potato pancakes and sufganiot, is like a donut. The children will receive dreidels as small gifts and maybe a little gelt too, if they are good children during the past year.”

Heidi’s wrinkled forehead showed her confusion.

As if reading her mind, the Rabbi said, “Dreidels are spinning tops, which are inscribed with Hebrew letters standing for “a great miracle happened there.” We also give Hanukkah gelt, which are gifts of money or small presents to the children.”

“So you give presents like we do?”

“Yes, my child.”

Heidi rose to her feet. “Thank you, Rabbi. I’m sure I will enjoy my first Hanukkah celebration.” She left and quietly shut the study door.

The rabbi whispered. “Pleasant dreams my dear Heidi. May God bless and keep you.”

*****

            Heidi enjoyed her first Hanukkah with the children, the Rabbi, and his family. At the time no strangers shared the house, so the celebration became a family affair.  David received the honor of lighting the last candles of the menorah on Hanukkah night. After the prayers, everyone enjoyed the traditional foods the Rabbi spoke of and the children received the gelt the Rabbi’s wife prepared for them. Joy filled Heidi’s heart as the children enjoyed the holiday. For a short time, their young lives got to enjoy something normal.

The Rabbi said. “Heidi. We hope you will like the special gift Gavriella and I got you.” He rose from the table and went outside.

“I wonder what it is, Heidi.” David said.

“And why would he need to go outside to get it?” Ruthie said.

A cold blast of nighttime air filled the kitchen as the Rabbi returned. He came into the room with a blue spruce fir tree with two wooden planks nailed to its bottom so the tree would stand. Rabbi Weismann said with a grand smile, “Happy Christmas, dear Heidi!”

Heidi gasped. “A Christmas tree! How wonderful. Oh Rabbi, you did this for me?”

“Well, yes of course.”

A tear fell from her left eye. She ran to him and hugged him. “You are so good to me, Rabbi. Thank you.”

“You are very welcome, my dear. Now, I understand we need some decorations to hang on your tree.”

Heidi brushed tears of happiness from her cheeks. “At home, my family always strings popcorn or cranberries to make garland. Mama bakes decorated gingerbread cookies to hang on the tree, too.”

Gavriella said, “Well, we do not possess either one of those, but how would these do?” She handed Heidi a velvet box full of hand-painted antique glass ornaments.

Heidi gasped. “They are exquisite!” She lifted one out of the box. “I never saw such beautiful ornaments.  Where did you ever get them?”

“Some Christian friends who lived with us for a while gave them to me. They intended to immigrate to the United States and needed to leave many of their belongings behind. I accepted their gift, and put them away. I figured God gave them to us for a reason. You are the reason, my dear Heidi!”

Heidi’s joy danced in her eyes. “Thank you! Thank you, both so much. I will never forget this Hanukkah ever!” She hugged both of them.

“Nor will we, dear child. It is your first Hanukkah and our first Christmas!” The Rabbi kissed his wife and smiled at Heidi.

Chapter 30

Lacrosse, Wisconsin–December 1940—Rosalie and Angelo looked forward to their baby girl’s first Christmas. Angelina was too young to understand about Santa Claus, but she pointed and smiled at the Christmas tree, shouting “Pretty, pretty,” when Angelo plugged in the colorful tree lights. Rosalie couldn’t wait until the child opened her first present–a Raggedy Ann doll she sewed for her daughter.

About a week before Christmas, Rosalie helped her mother-in-law decorate the Armani Christmas tree, while Angelo assisted his father to set up the outdoor nativity scene. When Angelo’s father unpacked the statues, Angelo drifted back to his boyhood when his Pa surprised the family with the figures of the holy family he secretly ordered through the Sears’ Catalog.  That first year they put out three statues—the baby Jesus in the manager, St. Joseph, and the Blessed Mother. At night the statues were lit with a bright flood light.  For the next several years, Mr. Armani surprised the family every Christmas with another piece of the nativity scene–an angel, a donkey, a cow, a lamp, a sheep, a shepherd, three wise men, and of course, the Bethlehem star. In later years, Angelo constructed a lean-to stable out of scrap lumber to house the Holy Family. Arranging the nativity set in the front yard with his father was Angelo’s favorite part of their traditional Christmas celebration. He looked forward to the day he could tell little Gina the Christmas story.

Right now, his baby daughter kept her mother on her toes because recently she learned how to crawl. Gina got into everything, learning the world through touching different objects, which most of the time brought the phrase, “No, No!” from an adult. Keeping the child safe from herself proved to be a full time job for the adults around her. Her grandparents never complained about Gina because in their hearts their granddaughter was the most gifted and beautiful baby God ever made.

This year, the Armani and Lombardo families decided to celebrate Christmas Eve together. In the Catholic tradition, everyone fasted until midnight and after mass, they enjoyed a great feast.

Everyone congregated at the church where Angelo and Rosalie got married the year before. Together they made a congregation within a congregation filling up a half dozen pews on the left side of the aisle. The scent of fresh pine wafted through the sanctuary and red, gold, and white ornaments decorated the trees beside the altar.  Flood lights placed on the floor shone a warm light on the trees while a beautiful nativity scene imported from Italy sat to the right of the altar. Gina found everything around her extraordinary and pointed to the decorations, shouting “Pretty, pretty!” Eventually, Rosalie took her out of church.

When the family got home around 1 a.m., everyone brought a hearty appetite to devour a feast which covered two long banquet tables. Mrs. Armani, Mrs. Lombardo, Eduardo, and Angelo’s grandmother worked all week to prepare the food. Shrimp scampi, lobster tails in garlic butter, fried calamari, broiled eel, meat balls, and spaghetti in marina. Large bowls of lettuce, canned tomatoes, banana peppers, and black tossed with homemade Italian dressing filled the largest bowl in the house. Cakes, pies, and dozens of different Italian cookies stood by after dinner for dessert. Rosalie wished Donna Jean and Josie could join them to experience a real Italian Christmas Eve because no words could express the abundance.

Rosalie and Angelo took a sleeping Gina home around 3 a.m. They gently placed the child in her crib and covered her with her favorite blanket. Rosalie smiled as her baby comforted herself by sucking her thumb to go back to sleep. Angelo put his arm around Rosalie and whispered, “I never dreamed I could ever love anyone the way I love the two of you.”

Rosalie smiled up at her husband and cuddled into his chest. Her heart swelled with love for him.

Angelo gently closed the door to Gina’s room and led her mother to their bedroom. The young couple celebrated their first Christmas by making gentle love before they fell to sleep in each other’s arms.

 

 

 

A Quiet 4th of July

world_spinningKen’s Multiple Sclerosis is a puzzling disease. Everyday is a surprise. Neither of us know whether he’ll have a day free of fatigue or one that is full of it. We hope the different holidays throughout the year will end  up being good days, but as time goes on, we’ve learned MS doesn’t care if we have plans or not.

The Fourth of July this year was a particularly bad day for him. In fact, he fought to keep his eyes open–literally. Not that he was tired. The muscles in his eye lids refused to work, no matter how hard he tried to fight them.

Needless to say, the downtown parade was out. He made me go to lunch at a friend’s home because we are invited every year, and she was expecting us. By evening, he still wasn’t feeling well enough to watch the fireworks–not even on television.

The day was a wash for him. I found myself very angry at the cruelness of his disease because no matter what he feels or thinks, the disease calls the shots. I suppose any serious diseases has the say-so too, but I’m not living with them. I am living with this. I want to shout, “It’s unfair!”

But this thing we call the human condition is not fair. We both accept this fact, so when these days come along, he rests, and I keep quiet and read. It’s called coping. It’s called love.Blog 3-31 003

A Bad Start

frustratedDid you ever have a day when you just wanted to run away from your life? Yeah. Me, too. In fact, today is one of those days.

I woke up this morning before six o’clock to the sound of Ken falling.  Believe me, that sound is worse than any jarring alarm clock. I think I lose a part of my life every time he tumbles because my heart stops.

We both try to make light of these situations because falling happens frequently. One slight little turn or wobble and down he goes. Luckily, most of his falls leave him unscathed. I think he has a legion of guardian angels on the job to break his falls. He could solve these moments of weakness by using his motorized wheel chair, but he prefers to hold on to walls and use his walker. I think he hates using his motorized wheel chair because when he’s in it he has to recognize he’s handicapped — so he fights it.

However, his stubborn attitude makes life harder for me when I attempt to pick him up off the floor. So far, I haven’t been endowed with super powers by any entity, so I struggle to pick up his 160 pound carcass off of the floor, while I order him to move a certain way.

Today it was too much. I stumbled out of bed and ran into the kitchen to find him grasping the edge of the counter top. I witnessed his legs shaking, so I grabbed the office chair that we use for him in the kitchen and wheeled it over to catch him before he fell again.

He had managed to make coffee and put his breakfast dishes on the table, but he hadn’t eaten yet. On top of that, the dog was dancing to go outside and the cat was meowing for his morning tuna.

Because this morning started with such a big bang, this normal routine of preparing Ken’s breakfast and taking care of the dog and cat made me spin out of control. I barely had my eyes open and here I was wanting to pull my hair out because things in my life went out of whack through no fault of my own.

I think MS stands for Mean Son-of-a-Bitch because that is exactly what a patient and those around him/her become during frustrating times like this. Yelling is a release, but it does little good. Huffing and Puffing doesn’t help. Nothing helps when you find yourself in the moment.

Taking deep breaths helps. A couple cups of coffee helps, and finally, being able to vent through writing with a little bit of quiet time, helps.

I’m back to normal now, able to focus and carry on. I’ve once again found that nice person inside me who I like a lot better than the crazy woman who took over this morning.

I still would love a vacation, though — perhaps a nice sail down a lazy river? Yeah. I’ll meditate on that.

Taxing Times

frustrated writerIt’s tax time. I always put off filing until the first week of April, because in my situation is almost comical to file in the first place. But, I went onto the Turbo-Tax website yesterday, filled out the information that was required and happily learned I have a refund coming both from federal and state. Yeah!

The only problem is, the IRS won’t accept my return because they cannot verify my identity. They will not give me an e-PIN number, and won’t accept my AGI from last year. So, I fixed what I thought was wrong and tried again, only to have the damn thing bounce back yet again. Now, I find myself in this electronic looping nightmare. I have two choices, hopefully get an IRS rep on the phone to help me, or I can file by mail.

I wouldn’t mind filing by mail, but I can’t print the forms because my printer has run out of ink, which means before I can do anything, I have to go the office supply store and buy new printer cartridges. The good news is the sun is shining, so after lunch I will venture out to get what I need and then try again with the IRS and Turbo Tax.

It just seems everything nowadays doesn’t go as I anticipate. I have also been going ’round and ’round with the mortgage company. They  escrow my insurance premium in my monthly mortgage payment, but yet they didn’t pay the bill — so the insurance company is taking withdraws from my bank account. So far, this hasn’t been resolved, either.

Don’t get me wrong — I love technology and shortcuts, but when they don’t work the way they are supposed to work, they are twice as hard to fix than when we used paper and pen.

So say a prayer to the electronic gods for me and wish me luck. I know I’ll need it.

Barb

 

When MS Comes Calling

family portraitI usually don’t talk about my husband’s struggle with Multiple Sclerosis because we try to keep a positive outlook. But sometime, like this morning, when I found him laying on the kitchen floor and not able to get up alone, the harsh reality of this varmint bites me and says, “I do exist!”

When we married 15 years ago, we promised “for better for worse, for richer for poor, in sickness and in health.” Unfortunately, we got the negative in all categories because of this damn disease. But through it all, Ken has become my hero. He never complains, no matter how hard his life has become. Everyday he deals with a tremor in his right hand, acne from the medication he must take, weakness in his legs, failing cognitive skills, as loss of short-term memory, and debilitating fatigue. I don’t know how he does it. But he does. With a smile and a funny sense of humor.

I know without his upbeat attitude and his ability to laugh at himself, I would have given up long ago. Everybody thinks I’m the strong one, but in reality it’s  Ken who is the rock. I gain my strength from him, and so far, we’ve muddled through this horrible adventure together. When a new disability comes, we creatively compensate for it. We haven’t cried or whined. I over protect him, and he protests that I do. We blaze the trail together  with supportive friends and loving relatives.

We’ve grown to settle for a simple life at home. We make dinner plans or watch a football game with friends. We rent movies and watch them at home. We laugh at our dog and cat’s antics. We find joy in a game of Scrabble. We’re together and that’s what really matters.

I don’t think this disease is a life lesson; instead, it’s just human frailty. We don’t ask, “Why us?” Instead, we’re thankful for everyday.

Where is the message in all of this heartbreak? I have no idea. Maybe someday I’ll have the emotional strength to write about our trials and travels together, but I doubt it. What advice could I possibly give to someone? MS is such a weird disease that no one experiences it the same. Every patient is different. And every caretaker is different. The emotional roller coaster is wild and scary with so many ups and downs, twists and turns you never know what to expect. There’s no logic to it at all.

So, even though it is trite, “we take  a day at a time.”  It’s the only way to calm such an unpredictable beast.