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Grandma had taught me that voting was a responsibility and a privilege. We walked about four city blocks. The polling place was a dimly lit room. Grandma was friendly and chatted with people. I was invited to sit with the ladies who worked at the table. I sat and daydreamed about growing up and being allowed to be on the other side of the voting curtain.
Grandma wore bright red lipstick, mascara, and high heels. She looked extra pretty, like she does on Christmas. She called her hair an updo. Her nylons had seams on the back of her legs. She wore her swing coat. I was excited and proud to be going to the polling place with her that Election Day in 1952.
I voted early this 2020 election. It was a grey day. There were no pretty ladies in high heels. We voters all looked the same. We wore jeans, masks and tired eyes. There was no voting curtain. This election day, my daydream was a wish that Grandma could send me a secret message from the afterlife, telling me what is going to happen.
I am old. “You’re not old” “You’re as young as you feel” “Age is just a number” When people use these phrases, I don’t think that they realize how ageist the remarks are. The implication is that young is better than old.
When I say that I am old, I say it with pride. My message is that I am an elder. I have wisdom that cannot be obtained any way other than by getting old. When I look at the wisdom that I have now compared to ten years ago, I smile. On each birthday, I find that I have more insight than I had on the previous birthday. This is one reason that I continue to look forward to aging. I use the word “old” freely. Old is not a dirty word. It is just as lovely a word as young. A ninety nine year old woman told me about her experience with a young person who said, “You’re not old”. The ninety nine year old laughed and said to me, “What do I have to do to qualify?”
A few days ago, I heard a younger person say, “You are eighty four years young” to a man. When he did not laugh, she repeated it loudly several times. This guy remained civil, but I could tell that the man receiving this statement felt like rolling his eyes. I did roll my eyes. This is a statement that has irked me since I was a little kid hearing TV show hosts saying it. The statement was followed by canned laughter. Again, it was implied that young is a better word than old.
Now that I am old, this may sound like a defense. However, I have always felt this way. As a child, I admired my beautiful grandparents. I learned from them. I pass that knowledge along whenever I can.
I remember an incident that happened when I was in my twenties. My coworkers, who were in their thirties and forties, were whining about aging. They did not like wrinkles or gray hair. I stated my opinions about aging being a positive experience. I was looking forward to the gifts that would happen at each stage of life. These women told me that I was wrong. They shook their fingers at me. They said, “Just wait until it happens to you, you will see.” Well, they were wrong. My well earned wrinkles are here. I do color my hair. I don’t do this to hide the gray hair. I do it because it is fun. I have colored my hair since I was fifteen and I created my green streak, long before primary colors in hair became a trend.
I have always found it difficult to say “thank you” when someone says that clothes or a hair style make me look younger. If they said “pretty” or “nice”, I would respond with a “thank you”. Younger is a description, not a compliment. Our culture is brainwashed into believing that a youthful appearance should be the goal. This is all about money. “Buy this goop & rub it on you. You will look young. Young is better, so buy some more.” Phooey! An old face is every bit as beautiful as a young face. Wrinkles tell stories.
There are many ageist posts on social media. I often see the post of old folks dancing. They put stupid hats and goofy shoes on the dancers. They dance awkwardly. Do the people who send or enjoy these posts know any old people? There are similar posts about exercise. My husband and I have a good time in most situations. We chuckle because younger people squeal that we are so cute. We have a convertible car. A neighbor said, “You two are so cute in your car.” Cute? Would they say this to a young or middle aged couple?
We sometimes hear old people described as one type. They are like that because they are old. This statement is not true. The grumpy old man was probably the grumpy young man and the obstinate teenager. Sweet, grateful old people often behaved this way when they were younger. It is true that crises and loss can change people, but personalities stay pretty much the same unless someone works on changing themselves. Old folks are as diverse as any other age group. They have varying beliefs and talents.
There is a difference between being sick and being old. Many grow old without being sick. On the flip side, young people sometimes become sick. I have dealt with some serious illness that I did not want. Younger people said , ” It is tough getting old” in response to my illness. It has been important to me to clarify that they are seeing sickness, not age. Another cliché that I often hear is, “Honey, don’t get old”. Have they considered the alternative?
Long ago, I had a teacher who was preparing to retire. It was important to her to mentor as well as teach her subject. She stressed the importance of developing interests and talents that had nothing to do with a chosen career. She said that if people neglect this, they will be less likely to find a hobby when they retire. I admired this white haired lady and I followed her advice. For me, art has always been important. It has been with me from childhood through retirement, My career has been in healthcare. I enjoyed diversions during my off time. I definitely pass this advice on to anyone who cares to listen. Whatever your job is, do other things for fun that will carry you into retirement.
In several Native American nations, people are not considered adults until they are fifty one years old. Until then, it is o.k. to fumble and make mistakes, as one finds their way around the medicine wheel. In this belief system, people should not give advice until age fifty one. At fifty one, we become wisdom keepers. It is not only o.k. to give advice, it becomes a responsibility to pass along, to mentor. You have no idea who may be helped by you. My retiring college teacher from decades ago did not know that I would mentioning her forty six years later.
Readers: If you are young I hope you watch and listen to the elders in your life. See how it fits and then move on to be exactly who you are. If you are old, be grateful to be here. With pride, see yourself as a wisdom keeper. Share and mentor when you can. I am old.
In our region, we are told that if the month of March comes in like a lion, it will go out like a lamb. This prophesy tells us that the opposite is also true. Today is March 2nd. Yesterday, March arrived with cold, windy, rainy weather. This leads me to believe that March will leave us on a warm, sunny day.
March is fun for me at my little art shop. I enjoy making items with a theme. March has celebrations. Folks certainly enjoy sporting green colors for Saint Patrick’s Day events.
My Saint Pat’s jewelry features shamrocks amidst a variety of pretty green beads. There is also an abundance of lovely green jewelry that that looks great year round. My fun comes in the making of these creations. These are one of a kind originals. My customers will not see themselves coming and going. For each special occasion, I also make a little something special for myself. I like to wear seasonal jewelry. I often forget that I am wearing my art until I get a compliment from the people I encounter. I guess I need to carry business cards when I go out, so that I can be a walking, talking ad. My Saint Patrick’s items are always available, however I will stop promoting these goodies after next week. This will give the post office plenty of time to get purchases where they need to be.
The remainder of March will focus on Easter in my shop. The Easter jewelry is whimsical and cheerful. The Easter animals are enjoyed by critter lovers during all seasons. I love return customers. Repeat customers mean that I am doing a good job. Last week, I sent this little Easter lamb set to a lovely return customer. We have grown to know each other via Instagram. I am happy that this sweet set has found a home with her. She notified me that she loves it. I offer more than jewelry during Easter season. There is a handmade dream catcher with Easter egg beads and a long Macaw feather. I have a similar one hanging in my home. I also offer my framed original abstract painting of the Easter Bunny. Rabbit lovers admire this one, especially during spring. The painting is another creation that is nice for all seasons. I will stop promoting Easter as we begin the last week of March.
Moving from the Lion days of March to the Lamb days of March keeps me aware of how much our seasons bring us. I feel grateful for these symbols of spring and I enjoy passing some of my joys along to others.
Myasthenia Gravis is nicknamed the “snowflake disease” because snowflakes are different from one another. MG patients are also different from one another. All muscle groups can be effected by this neuromuscular disease. The disease can vary, like snowflakes, within the same person from day to day. Sometimes changes happen from minute to minute for a snowflake patient.
I am sitting in a room with some of my watercolor paintings, framed and hanging on my wall. These were painted prior to five years ago. This is when I began noticing my symptoms of Myasthenia Gravis. My double vision began to distort what I saw. I could not grip the paint brush. I dropped it. This was a profound loss. I did not understand what was happening to me. With diagnosis, treatment, and a support group, I have learned how to manage my illness. It is frustrating to find that I could do something an hour ago, but cannot do it now. I am learning that I might be able to do it later, after the muscles have rested.
When I lost my ability to create with watercolors, I explored different mediums. I found that I also loved colored pencils. I began catching new snow flakes. More recently, I discovered needle felting. Creating with wool is new to me and I love it. Because it involves repetitive motion, I need to limit my time with needle felting or my hand muscles weaken. Art experiences, even when brief, light up my life. My past watercolors were detailed. When I lost my ability to see clearly or to control my paintbrush, I experimented with abstracts. I surprised myself by selling the original and a print of this abstract at JeriAielloartstore.etsy.com. I do not know if I would have dabbled in abstracts if I were not pushed in this direction.
After having spent several years, not being able to hold a paintbrush to try detailed watercolors, I find that I am currently able to do it. When I found that I could do this, a part of me became afraid. What if I can’t continue to do this? What if I experience this joy and loose it again? I do not know. I imagine that I will grieve the loss again. For now I am grabbing onto my watercolor snowflake.This is a current detailed watercolor.
I have been a slow learner, but my illness has taught me to live for the day. I am more present and am able to be in the moment. When I say, “I can do this” or “I cannot do this”, it is not a concrete statement. I change frequently. I would like things to be predictable, but I am not able to predict. All that any of us have with certainty is right now. My illness keeps me aware of this.
I continue to hear from other MG patients. These fellow snowflakes tell me that they are helped and encouraged by my experiences. I know that not everyone reading this is an art enthusiast. I also know that other MG snowflakes have experienced losses. Perhaps this will be an inspiration to look for alternatives for other particular losses. For today, I am a snowflake who can paint with watercolors.
Can you imagine what would happen if I went to the post office and said, “Will you please mail this for free”? Yet those of us, who are artists on e-commerce websites are encouraged to do this to draw customers. I can understand why these sites encourage this. When makers offer free postage, it is assumed that they will increase the price of their item to make up the loss. E-commerce sites get a tiny percentage for each sale. Last year, one of the larger sites had over 1.7 million sellers. That adds up. The site will certainly make a profit from this. The manipulation is wrong. I feel like the site is attempting to manipulate me. I choose not to manipulate my customers.
This is a difficult situation. My prices are already reasonable. I hear this from my customers. I charge for the cost of my supplies and I have a slight charge for my time. I definitely make less than minimum wage.
My biggest selling items are jewelry. I package with a gift box wrapped in recyclable bubble wrap. This goes into a manila envelope. For quite some, these packages cost $2.67 to mail. I charged $3.00 postage for this size item. This gave me thirty three cents for the box, envelope, bubble wrap, and my trip to the post office. I lost money on a regular basis. Last year, The postal service increased to $3.00 for the same sized envelopes. I raised my postage to $3.50. The fifty cents is a little more fair to me. The fifty cents goes toward the cost of my trip to the post office, and my packaging supplies.
2018 is here. Again, postage went up to $3.50 for my packages. I am increasing my shipping and handling charge to $4.00 to help cover my costs. Changing these prices on my site takes time. I will be gradually doing this as I add new things and as I renew seasonal items.
I am aware that people who are focused on profit and marketing will critique me negatively. There are types who believe fooling others by saying, “free shipping” is a good business move. I am proud to say I am not that type of person. I am not Amazon. I am an old lady working from a tiny studio in my home. I love creating art. I would be making things whether I sold my creations or not. I will continue to respect my customers. I will be honest. I will continue to live by my life values.
February causes me to think of spring and relaxation. I know many do not feel the same. I am aware of complaints about a long winter. Some report having an after Christmas let down. Yes, it is true that February sometimes brings heavy snowfall to my Chicagoland area. Our weather is plummeting toward zero as I write this. In spite of it all, I like February. For most of us, the Christmas trees are down and decorations are put away. The people who find Christmas stressful can put it behind them until next year.
A big holiday arrives tomorrow. Punxsutawney Phil, the groundhog, will step out to look for his shadow. If he does not see his shadow, we will have an early spring. What a lovely holiday. I have never met anyone who feels pressured by Groundhog day shopping, office parties, or big holiday dinners. We simply enjoy the antics of our friendly groundhog. Of course, I did see an online post today that stated Groundhog day is not based on science. Some yahoo believed he needed to point this out to the rest of us.
Another sign of spring/summer for me is the return of Dairy Queen. Our local Dairy Queen closes up for a few months every winter. They always reopen in February. This is a promise of summer that makes me smile.
Valentine’s Day will be here in two weeks. Again, we have a low pressure holiday that folks can participate in or not. For me, Valentines become my featured items at JeriAielloartstore.etsy.com. I created my new Valentines during December. I began to feature them, the day after Christmas. I have a lot of fun making seasonal art. Customers let me know that they like my Valentine earrings, necklaces and bracelets. A nice feature about heart shaped jewelry is that it looks great all year round. This is different than Halloween and Christmas styles that may be limited to that season only.
I also make heart shaped dream catchers. These make unique Valentines. Last year, A customer wrote me a letter about her terminal illness. She expressed gratitude and said the dream catcher was the perfect gift for her to give to her love on their last Valentine’s Day. I am touched and honored to have been a small part of their experience. This was a profoundly meaningful interaction. Working from a small at home studio leads to different kinds of customer relations. I have formed a nice friendship with a return customer from California. As time passes, we find that we have much in common. When folks buy gifts, they sometimes write to let me know the recipient liked the present.
During this upcoming week, I will focus on Valentine products at JeriAielloartstore.etsy.com. I also offer a small selection at Artyah.com. People with paypal can buy directly from me. A small online business is perfect for me as I cope with Myasthenia Gravis. Sometimes I can work hard on my little shop. Sometimes I cannot because of symptoms of this illness. Making art gives me a sense of purpose. Being online keeps me connected when my illness isolates me. I am moving on through February, the season of love.
Myasthenia Gravis (MG) has slowed me down. MG is an autoimmune neuromuscular disease that effects all of my muscles. The effected muscle groups fluctuate. The muscle weakness is made worse by use. Resting the muscles sometimes helps for a while.
I am moving into my fourth year of coping with this disease. This is a chronic illness. There is no cure, but there are treatments. I am grateful to say that I am benefiting from treatment. During my first year with MG, I tugged an oxygen tank and needed a walker or wheel chair to get around. I now usually need oxygen only during the night. I swallow a handful of pills a few times per day (immunosuppressants & anticholinergics). Every three weeks, I spend a day at the infusion center for IVIG treatment.
With this help, I am getting around better. I move around independently. I can often socialize for about two hours. At the two hour point, my double vision becomes extreme. I drop things. My voice weakens. I become very embarrassed of these symptoms. But, the important thing is that I feel pretty normal during those first two hours. During those times, I feel like the woman that I used to be. I was a multi tasking professional. I met deadlines and productivity expectations. I was active , fun, and helpful. I mention this because I think many of us mistakenly believe that active people do not get sick. We do.
Now meet the slow me. I repeatedly find myself in this scenario. I stand at the curb of a street or parking lot, waiting for a long break in traffic A car will stop and motion for me to cross. I shake my head “no”. They stubbornly stay there and continue to tell me to cross. This type of person often has a big grin on their face. To me, this grin says, “Look at what a nice person I think I am”. If I give in and begin my slow trudge across the street, the driver’s grin becomes a frown. I cannot move fast. The driver begins waving their hand quickly in the direction that they want me to move. This could all have been avoided if I could have simply crossed the street during a traffic break. I am learning to ignore these yahoos that insist I cross, in spite of the nasty face that they might make.
My MG is now an invisible disease. I am currently not using a walker or oxygen when I am out. This does not mean that I am healthy or that I feel good. I am learning a lot about human nature. Many people like being in a caretaker role. These same people are less kind to those that they see as having equal abilities. I have heard other MG patients talk about how misunderstood they felt when people said that they look good. People with invisible diseases are often met with disapproval for needing handicapped parking. We are seen as sleepy when our eye muscles droop. We are seen as soft spoken when our vocal cords weaken.
I have found that a good place to spread my recuperation wings is the grocery store. I go there at odd times to avoid crowds. The supermarket is an exercise opportunity. I reestablish my leg strength. I can lean on the cart as I do my laps in the aisles. Again , people were quite patient with me when they saw my oxygen tank or walker. Without those devices, I have become simply annoying. I am smiling on the inside because I am happy to not need assistance. However I am aware of heavy sighs and eye rolls from others when I am slow. Sometimes this hurts and causes me to feel inferior. On other days, I let it roll off and I carry on. Recently I had an encounter where a man put his hands at my waist and moved me to the side. This man’s lack of boundaries was so insulting.
I enter the store feeling okay. However this is a condition in which muscles are weakened rather than strengthened by use. After a few aisles of moving items from the shelf to cart, I begin dropping things. Repetitive motion is bad for this disease. By the middle of the store, my double vision increases. Stores use lighting for marketing. This distorts my vision more. Common items feel unusually heavy. When I can maneuver these items, I feel very proud. When I cannot, I have learned to ask for help. I am blessed with my helpful husband, family and friends.
As I wrap up my shopping trip, I choose the longest slowest line, so that I will not hold up the fast lane folks. I am pleased that we are living in the debit card era. This saves me from dealing with money with my weakened hand muscles.
I am aware of the sighs and the “get the lead out” mumblings when I am in the way of an impatient person. I am more aware of how grateful I am to be out and about. Thanks to treatment, I am doing so much more than I could do during the first years of my MG experience. I do not know how long this improvement will be here. This is known as the snowflake disease. I know what it means to be thankful for one day at a time..one moment at a time. I write these articles with other myasthenia gravis victims in mind. I like to share what I find helpful. By sharing, we can be there for one another.
I shopped online for a cane to help me deal with the double vision and altered depth perception that I experience as a symptom of Myasthenia Gravis (MG). I was thrilled to find a metallic purple one. PURPLE CANE, PURPLE CANE! When told my husband about my find, he said “Didn’t Prince use that for the title of a song?”. Now I cannot get the tune out of my head when I refer to the cane. But I will try, so that I can move on with this article.
Here is a reminder: The nickname for MG is Snowflake Disease. This is because symptoms vary from person to person. Symptoms can also change quickly within the same person. If you or the person that you care for has this disease, you may find yourself nodding with recognition of my experience. Perhaps your journey with MG is different than mine. My purpose in writing these articles is to help fellow snowflakes cope with challenges.
The above photo shows what I experience as I approach a single step or curb. I have been coping by tapping the back of my heel to the structure to determine where it is. One day I had the thought of how handy it would be to tap with a stick. Then I burst out laughing. They call that a cane! I was not inventing a new contraption. My neuro opthamologist absolutely agreed with the cane decision. He said, “The last thing you need is a fall”.
The medical term for double vision is diplopia. Diplopia and ptosis (drooping eyelids) are often the early signs of Myasthenia Gravis. This was my situation for two years before my other muscles were effected. I experience multiple vision. I see several images rather than simply double. Usually my multiple images are vertical (side by side). Sometimes they are horizontal (on top of each other). When this happens together my brain gets so jumbled. Our eyes are simply the camera lens. Vision happens in our brains. The jumbling causes anxiety. I have learned that daily meditation, mindfulness, and other relaxation habits can help ward off the anxiety caused by the visual disturbance. I need to do this on a regular basis, rather than wait for the anxiety to arrive.
My eye Doc is wise. He schedules his MG patients for late afternoons and early evenings. Double vision is worse after using one’s eyes for a while. MG vision problems are least apparent early in the day. May I suggest that patients find a neuro opthamologist if they have MG. This is a specialist with experience in treating this rare disease.
This impairment interferes with socialization. During a recent visit with friends, three people on a sofa suddenly became six people on a sofa. Rather than talking about my illness, I try to compensate. It becomes difficult to know where to look. I find myself feeling embarrassed and inferior. I am learning that when I do share my experience, I find that most people understand. Some do not, but that is about them and not about me.
I believe my new amazing purple cane will boost my confidence. When I loose my depth perception, I will tap my beautiful purple stick, rather than turning back in terror and feeling embarrassed.
I am so fortunate that my double vision begins at four feet and further. I am able to write, use digital devices, read, and make art. I have recently started to have some close up diplopia. Closing my eyes for a while helps. Closing one eye or wearing a patch always helps. My Doc feels confident that he will be able to treat this with added prisms in my glasses if it progresses.
In the mean time, I am joyfully and gratefully bopping around with my purple cane. By the way, yes, I do have that Prince song amidst my music.