Category Archives: Daily Living

CPAP Therapy Works So Why Am I Still Sleepy?

Daily Living, Health and Wellness, Special Observations, , , ,
Man laying on his side in the bed with head on a pillow. His eyes are close. He is using a CPAP machine
Man with sleeping apnea and CPAP machine. Includes standard license.

Using a CPAP Machine Again

Getting a consistent good night sleep has been a major challenge. For many years I have struggled mightily  with sporadic results. I have gone from using a CPAP machine, to taking meds for Non-24 sleep wake disorder, to nothing and now back to a CPAP machine. Yes, you read  right. I have come full circle.

Last summer I started using a CPAP machine again. Seven months prior I took a home sleep test  and  discovered  my oxygen levels were too low. So, my sleep doctor ordered a machine but it took six months to get it because of a major recall and all that pipeline stuff going on. My doctor was singing its praises. She shared how much better my sleeping would be. How much rest I would get. How much better overall I would feel. Although, my non-24 was still lurking in the background, I was sold. But that aint what actually happened.

The Real Story

Now, let me tell you the real story. No salt, no chaser. Yes, I admit initially my CPAP machine was  fulfilling all of those wonderful things. I slept better. I felt better. I had more energy. I was doing the happy dance.

Close up of a clock

But when daylight saving time rolled around in November all bets were off. All my old sleeping problems came crashing back. I wasn’t falling asleep. I wasn’t staying asleep. I had insomnia. When I woke up I felt like death warmed over. I had low energy; no get up and go. What was going on with me? I had been doing so well and now this?

Taking Meds Again

A prescription bottle laying on the side with medication spilling out.

Out of desperation, I started taking meds again. I would alternate  between my former meds for non-24 to prescriptions. I even started dabbling  with CBD. Nothing worked. Not long term at least. Meds work well for a minute or two  but are not recommended  as a permanent solution. So, I take  them sparingly  and only when my sleeping is really bad.

Just the Way It Is-No Miracle Cure

I had made peace with my lack of sleep a long time ago. I know full well   sleeplessness impacts mental health  and can cause  or exacerbate depression. I was not thrilled to go back down those old dark roads. However, initially using the CPAP machine  made such a difference that I quickly forgot how bad it use to be. I spoke with my doctor  and she said this might just be the way it is but I refuse to totally believe that.

Empish Sleeping

I did a little Googling and found  using a CPAP machine is not a miracle cure  for all my sleeping problems. The Mayo Clinic listed 10 common problems. Some  I identify with such as difficulty falling asleep and distracting noise from the machine. I learned about CPAP resistant syndrome or True Residual Sleepiness. Never knew this condition existed and will chat with my sleep doc about it at the next appointment. Apparently, there are other factors  impacting my sleep that don’t have a direct connection to the CPAP machine. Like my non-24 sleep wake disorder and blindness. This was a huge comfort  because I saw it wasn’t just me.

Doing All the Right Stuff

I mean I am doing all the right stuff. Keeping my regular bedtime routine. Going to bed at the same time every night. Playing relaxing music or a YouTube video. Completing breathing exercises. Reading audiobooks conducive to bedtime.

I also have followed the CPAP machine guidelines  for upkeep and usage. Cleaning my supplies weekly. Using distilled water for the humidifier. Ordering  supplies when needed. Changing the filter every 2 weeks. Monitoring  and adjusting my mask when there are leaks. Sleeping with the machine at least 4 hours a night.

Listening to the Science

To stay positive, I adjusted my expectations. I am listening to the science as they say. I am listening to my body  and its responses. Today is daylight saving time again. Changing the clock back and forth  has a direct impact on my quality of sleep. But how much I really don’t know.  This is not just a problem for me but thousands of Americans. So much so there is  the Sunshine Protection Act  currently moving through Congress. I am hopeful with this time change I will revert back to those happier sleeping days. I’m  ready to do my happy dance again.

Empish Yawning

Spring is here and time for new beginnings. It is also National Sleep Awareness Week, (March 12-18). So as I sit here this afternoon at my computer writing this post and yawning,  I am determined to remain optimistic.

How a Rare Eye Disease Caused My Blindness But Didn’t Stop My Life

Daily Living, Health and Wellness, Special Observations, , , ,
A Black male patient is sitting in a chair, facing his white doctor who is doing an exam/refraction with a phoropter.
Image courtesy of the National Eye Institute, National Institutes of Health

Editor’s Note: Feb 28 is National Rare Disease Day and I am reposting an article I wrote for VisionAware on my rare eye condition and how it caused my blindness.

What is Vogt Koyanagi Harada Syndrome?

I am sure you have heard of common eye conditions like glaucoma, cataracts and diabetic retinopathy. You are probably familiar with Age-Related Macular Degeneration  that impacts our older population. But have you ever heard of Vogt Koyanagi Harada (VKH) Syndrome? Do you know how to pronounce it? Where it came from? How a person gets it? Well, neither did I when I was diagnosed in 1995.

a blind woman wearing sunglasses and holding a white cane

The discovery started out so strangely with violent headaches like someone was hammering on my head non-stop. I experienced tearful eyes like you get from cutting raw onions. Next came intense aversion to both indoor and outdoor light like a vampire. I kept the lights off with the blinds and curtains closed. When I went outside, I wore dark wraparound sunglasses avoiding all light from entering my eyes.

I never had problems with my vision in the past. I had no idea what was happening to me. I had just moved to Georgia after college graduation. I was starting my career. I had no medical insurance at the time. So, I was reluctant to seek medical attention and relied on home remedies and over the counter solutions. Visine might get the red out but it wasn’t working for my situation. Additionally, there was no internet. Therefore no way to do a deep Google search.

VKH Syndrome Explained

After a week, my roommate convinced me to go to the emergency room. My vision was not improving and getting worse. The doctor tried to administer an eye exam but my eyes were too inflamed so he referred me to an eye doctor. I went there but they didn’t know what to do because they had never seen eyes in the condition mine were in, which kind of freaked me out. They referred me to a specialist and it was there where I got the proper diagnosis and started my treatment. I learned that VKH Syndrome is an autoimmune disease characterized by chronic, bilateral uveitis.

The National Eye Institute says that “uveitis is a general term describing a group of inflammatory diseases that produces swelling and destroys eye tissues. These diseases can slightly reduce vision or lead to severe vision loss. The term “uveitis” is used because the diseases often affects a part of the eye called the uvea. Nevertheless, uveitis is not limited to the uvea. These diseases also affect the lens, retina, optic nerve, and vitreous, producing reduced vision or blindness.”  

I also learned that my eye condition is considered a rare disease or disorder because about 1.5 to 6 per one million patients are diagnosed in the United States. This is a current statistic from the US Department  of Health and Human Services  but I would dare to say the numbers haven’t changed much since 1995. Additionally, I was hard pressed to find any info when doing research. The only good source was the National Organization for Rare Disorders, (NORD). They still list my eye condition today in their database. The discovery was bittersweet. On one hand I was glad to find a trustworthy authority besides my doctor. However, on the other hand I was now dealing with a rare medical condition that was abnormal, had no cure  and not top priority in the medical field.

Tried Various Treatment Options

When I got my diagnosis the doctor had no explanation only that I had it and there was no cure. We started a treatment regimen immediately. I was on steroids called prednisone, both eye drops and oral pills, to stop the inflammation. Improvements came fast. No more headaches, tearing or being a vampire. I didn’t regain total 20/20 because of nerve damage but my eyesight was pretty good. I could manage my life and go to work.

This went on for a year or so. However, the good times didn’t last because prednisone is a super strong drug with awful side effects and I had pretty much all of them. The goal was to reduce and eventually get off the medication but each time my doctor reduced the dosage my vision decreased. We tried this schedule multiple times with no success. In the meantime, I was suffering from violent mood swings, ravenous appetite, hair loss, major weight gain, and rapid facial hair growth.

A prescription bottle laying on the side with medication spilling out.

He referred me to a more experienced specialist. The new doctor also saw the same problems. We tried other kinds of medications and even prednisone eye injections but they were not as effective and had other kinds of side effects. My lenses became infected and had to be removed. I ended up having emergency eye surgery where both eyes were operated on at the same time. This is not standard eye surgery procedure. After surgery, I had no peripheral vision and only saw blurry blobs. I  wore thick bifocals   for clarity and focus. Around this time, I sought help from a vision rehabilitation center. I learned how to use a white cane, adaptive technology and daily living skills. I also got assistance to keep my job with tools for the workplace.

Decided to go Blind and Stop Medication

Close up of a stop sign

Yet my vision only got worse with both retinas detaching. It was time for the hard talk. My doctor and I had a heart-to-heart discussion. I told him I was ready to let it all go and let the eye disease run its course. We both knew that my vision was not improving even though I was taking several medications and the side effects were getting worse. I wanted my life back. I wanted to be happy and healthy. I told him that I would rather be blind and healthy then sighted and sick. I was going nowhere fast and I was young and had my whole life ahead of me. At this time, I was about 28 years old. I also had no idea how all these meds would impact my body long term. I was worried about my future.

My doctor said he never had a patient go blind. He was unsure how things would go yet respected my decision. He started tapering me off the meds slowly. This resulted in withdrawal pain that I had to endure. What was initially supposed to be 6 months of medication ended up being 3 years. That’s a lot of chemicals in your body. Mine was detoxing. It was not pretty but I made it through.

Totally Blind and Living Well with This Condition

Empish inserting an ocular prosthetic lens in her eye

That was over 20 years ago. I am doing well, living my best life. I am totally blind and wear ocular prosthetics. But that’s a whole other story for another day! I am working from home as a writer and am healthy, happy and well.

VKH Syndrome is still a rare disease I still struggle to spell and pronounce. Yet I know more  about it. It’s easier to find online as well as its generic name, uveitis. Today when I search on the internet, I can find information. There is even the American Uveitis Society that gives all kinds of good stuff on the condition and a list of referring doctors for treatment. This was not available back then. As advancements in medical technology and treatment increases, I am hopeful that my rare eye disease will become common place.

Can You  Feel the Beat? My 4 Tips to a Healthy Hart

Daily Living, Health and Wellness, Special Observations, , , , ,
A female doctor listening to her female patient's heartbeat

February is  not only the month for romantic love and cute little Valentines  but American Heart Month. It is important to focus on our actual hearts  and keep them as healthy and strong as possible.

Family History and Racial Background

I became more aware of my own heart health when my father passed away from heart disease. Later discovering it was a family condition as my paternal grandfather and uncle  all died of the same thing. Then just a few months ago my older cousin died of a heart condition. So, you see how important this issue is for me.

Red and white roses on a casket in the back of a white hearse on a bright sunny day

To add extra fuel to the fire, I am more at risk as a Black working age adult. Black Americans are twice  as likely to die from hart conditions as other racial groups. Now, knowing all of these factors could be depressing. But knowledge is power. When you know something you can do something. So, what am I doing? Well, besides blabbing about it here on my blog, here are 4  tips I am making to have a healthier heart.

1. Check My Blood Pressure

Empish using a talking blood pressure monitor with cuff on her arm

For years I have struggled with high blood pressure. It has been one of those things I  don’t get too discouraged by but work on constantly. I know that adding extra stress to my life by worrying  will only increase it.

I know that high blood pressure is directly connected to having a healthy heart thus avoiding heart attacks and disease. As a matter of fact, the American Heart Association says the excess strain and resulting damage from high blood pressure causes the coronary arteries serving the heart to slowly become narrowed from plaque causing a buildup of fat, cholesterol and other substances.

I mitigate this challenge by using an accessible blood pressure monitor and knowing my numbers. My blood pressure monitor talks and gives my numbers audibly. I record them on an Excel spreadsheet so I can   monitor any fluctuations. But  tracking these numbers is not enough. You gotta know What they represent and how they connect to yor life. So, I have learned what the top and bottom numbers mean  and if my pressure is high or normal.

2. Exercise on a Regular Basis

Empish doing arm exercises with hand weights

back in 2003 I created a home gym. I had stopped going to gyms long ago when I lost my vision because they weren’t very accessible. All my equipment is placed right in front of my entertainment center so I can either watch TV or listen to my music CDs while I work out. I have even placed one of my audiobook players nearby to listen while I exercise.

Empish on Treadmill

On a typical week I work out about 3-4times alternating between my treadmill, exercise bike, floor mat and hand weights. I am still making efforts to lose weight but I feel so much better that I created my own home gym to exercise. Whether it rains, snows or is sunny outside it does not matter. Whether a friend comes to workout with me it does not matter. I have everything I need set up in my home so I can do it independently and when I want.

3. Eating More Plant Based Meals

vegetable salad on plate with other veggies on table.

I made changes to my meal plan and have move more into a plant base diet. This change surprisingly has been easy because fruits and vegetables are my jam. Typically, I eat a salad everyday as part of my lunch. Filling my salad bowl  with lettuce, tomatoes, cucumbers, broccoli and even green bell peppers and onions with a sprinkling of chopped nuts.

Empish is smiling and standing in kitchen with hand on her air fryer. She is wearing a white kitchen apron and the air fryer is on the counter with plate and seasonings.

I also have added more flavor to my cooking . I use no salt seasonings and spices. When I do break out the saltshaker it is a low sodium variety. Once my food is seasoned I sometimes use an air frier for cooking instead of always using my gas stove. My air frier has been a God sent  because I can get that crunchy texture without the fatty oil.

4. Reduce Stress, Anxiety and Anger

It is easy for us to just deal with the physical things in life. We can read  all the tips and tricks to have a healthy heart. Yet,   miss the stress  cues. Living everyday is hard  and stuff  piles up causing anxiety and even anger. Staying calm and relaxed   is hard to do when stressed out.

Empish sitting on mat in a yoga prayer pose

Like in the AA meetings, I recognize I have a problem. I don’t deny  what I am feeling. Next I pray and  give it to God. Admittedly, that doesn’t always work. Sometimes I will journal and release it on the computer page. I will also call up a trusted friend and vent. Yes, it is good to release some occasional steam. Especially with a person who gives you a save space and can relate.

Regardless of your family history  or racial background having a healthy heart is critical to survival. Can you feel the beat? Now that you know What I am doing to keep my heart healthy  share your tips and tricks too.

7 Reasons I Love My Local Public Library

Daily Living, Literature, Special Observations, , , , , , , ,
A Caucasian woman is reading a book while holding it in her hands. The book covers most of her face where only her hair and eyes are visible. She is standing in front of a wall of books at the library.

February is  known as the month for romantic love.  We wear the color red and give special things to our sweetheart.  But who’s to say we can’t fall in love with our public library too.

National Library Lovers Month

Books on desk with cup of tea

February is also National Library Lovers Month where the focus is on reading and the institutions that provide books. It is a time to honor and recognize the important role that libraries play in the community. For my reading enjoyment, there are two go-to libraries I personally use. The National Library Service for the Blind and Print Disabled and Bookshare.

But there is also a third option. I use my public library right in my neighborhood. Although I  am blind, this library is inclusive and available for everyone. Here’s 7 reasons why.

Books in Alternative Format

1.  Local public libraries supply books in audio format and large print. Their collection might be limited but it is available. I have checked out books on CD many times from my public library and members of my book club have gotten the large print version. Also, books are available in electronic format in audio and ePub on smartphone apps. My favorite one is Hoopla. It is fairly accessible with Voiceover on my iPhone. I can check out a certain number of books, magazines, movies and music per month via my public library card. Plus I can get them through instant download so there is no wait time. WooHoo!

Low Vision Aides and Devices

2.  Some public libraries offer low vision aids and devices. Hand-held magnifiers, CC-TVs and magnifying screen overlays can be found to assist with reading printed materials while at the library. If you are low vision ask about these devices at the circulation desk.

Stay Connected to Community

3.  The public library helps me stay connected to my community. Sometimes being visually impaired is isolating and struggling to connect is hard. Many times, I have attended events like county/city meetings, forums and town halls. At these events I have not only kept up with current happenings but made connections and bult relationships with people in my community.

Voting

4.  Many public libraries are voting precincts use for early voting and special elections. I have voted several times at my local public library. I have found it easier, faster and more convenient to vote there than the precinct on my voter’s registration card. Contact your voter’s registration office for more details on this option.

Empish at Paper Voting Machine Demo

As a side note. A couple of years ago my public library conducted a demonstration of the new paper ballot machines when they were rolling out in my state. I attended and learned how to vote with the new machines and was ready to go when the next election came up.

Classes and Events

Empish and the Author, Noel Holston at Library Book Signing
Empish and the Author, Noel Holston at Library Book Signing

5.  Public libraries host special classes and events. At my library I have attended so many special community events. For example, I went to an arts and crafts class where I learned how to make homemade sugar scrub. There have also been classes like yoga, personal finance, home ownership, and even movie nights. Over the past several years I have attended numerous author lecture discussions where the author will do a reading and Q&A afterward. I especially love these author events because I get to engage with the author, learn about their latest book and get it signed. Book festivals are another library special event. These events bring out tons of book lovers and enthusiast. You get to hear lots of authors share about their books, get them signed and interact with others like yourself.

Book Discussions

6.  Public libraries host monthly book discussions. Besides reading books, I love attending book discussions. I attend two  at my public library. We meet monthly via Zoom because of the pandemic. But before COVID we met in person, one met at the library and the other met at a local restaurant for dinner and discussion.

Passes to Cultural Activities

7.  Some libraries offer free passes to the zoo, parks and museums. These passes are typically first come first serve. Just ask the librarian at the circulation desk for more details.

You’ve Got Mail! US Postal Service Offers Programs for the Disabled

Daily Living, Special Observations, , , ,
A mail truck parked on a street in a residential neighborhood.

I never saw the 1998 romcom, “You’ve Got Mail” but  I understand the title. Receiving mail  can be thrilling and exciting. Opening a package  or letter from a friend or love one brings positive feelings. Of course, unless it’s the bill collector! Otherwise most people are happy to receive mail. People with vision loss share the same sentiment but with  a little stress. This is because  we can’t always read the package or letter. Sometimes we don’t even know mail has arrived. Or we have difficulties  retrieving the mail  from the mailbox. So, what is the solution?

The US Postal Service recognizes  some of these problems. They have provided services  the blind and disability community can use. Saturday, Feb. 4 is National Thank a Mail Carrier Day and in honor of this observation I will share these options and how they benefit my life.

1. Free Matter for the Blind

This program allows eligible participants to receive and send mail for free. Mail that qualifies as Free Matter includes large print documents, braille, audio recordings and talking book players.

When I worked at the Center for the Visually Impaired, we qualified for this program. We could send  materials to blind and visual impaired clients  free. The cool thing is it works both ways.

Display of NLS Talking Book Player, Cartridges and Earbuds
Display of NLS Talking Book Player, Cartridges and Earbuds

I can receive items from organizations serving the blind and mail them back for free. I get  blind products and audiobooks  plus audio described movies from the National Library Service for the Blind and Print Impaired. I don’t have to pay postage to send those items back.

Also, I have used the program when mailing my white cane for repair  to a local orientation and mobility instructor. I will place the cane in a packing envelope and take to the post office. There they will stamp it free matter and mail it.

2. Deliver Mail to Your Door

Called disability delivery or doorstep delivery. This service is available if a person is unable to retrieve their mail from a mail unit . I qualified because I  am blind and live in a subdivision where the mail  is delivered to one  location instead of each individual house. This location is unsafe for me to travel. Instead, my mail is delivered to my front door.

Row of about 8 residential style mailboxes

To apply I had to write a letter explaining my situation and provide medical documentation of my disability. Once I was approved I had to install, at my home, a certified US Postal Service mailbox which I found at a local home improvement store. The mailbox is next to my front door with my house number clearly displayed.

3. Informed Delivery

This program is not specific for the disabled but we benefit anyway. Once you sign up, the US Postal Service will send a daily email  with scanned images of the mail you are to receive  that day or in the next couple of days. This includes letters and packages. Although I can’t see the images  I  can read the text with my screen reader notifying me mail is on the way. I don’t check my mailbox daily so this service gives me advance notice. Plus I know who the mail is coming from so if I am expecting something important I know it ahead of time.

When it comes to mail these programs make living with a visual disability a little easier. When I get my notice you’ve got mail I feel very little stress or anxiety. Thanks US Postal Service.

Are Jigsaw Puzzles and Writing Alike? Checkout These 13 Similarities

Daily Living, Special Observations, Work Life, , , , , , , , , , ,
Woman working on puzzle. She is seated at a table in front of a puzzle filling in the bottom section, while the middle and top are completed.

Jigsaw Puzzles Were Part of Childhood

When I was a kid, assembling jigsaw puzzles were a big part of my playtime. I started out with big puzzle pieces and as I got older advanced to the small pieces. You know the ones with the 1,000 pieces and more. It was my dad who introduced me. Jigsaw puzzles  and board games  were  played regularly in my household. We would sit  at the table for hours working on them. We would use large pieces of cardboard  to keep the pieces together as we assemble the puzzle. While the loose pieces would safely stay in the box.

A display of various accessible games on a table. Games include Connect Four, Braille Uno cards and Braille Dominos.

Today, I don’t work on jigsaw puzzles any more but they taught me a lot about life  and even more about writing.  Listed below are  some interesting similarities.

1. Assembling a jigsaw puzzle requires one piece at a time.

When I tackle a writing project I do it one step at a time. Writing an outline, doing the research, coming up with a catchy headline and on and on all require  organization and concentration. Well, at least for me. I mean I have juggled more than one writing assignment  but withing those assignments I focused on one piece of it at a time.

2. Assemble boarders first.

Young Black man sitting on bench in front of a building writing in a notebook

When I  jump into my writing I think broad then noodle the idea down. Also, borders  reflect boundaries and  structure. Creating boundaries help me with staying on track and being focus. It can be easy  to start off with one idea and then the next thing you are Alice going down the rabbit hole. Sometimes it is nice to let my mind wander, letting those creative juices flow  but once  I get the idea I need to pay attention to complete the writing assignment.

3. Try new things and don’t be rigid.

When assembling a jigsaw puzzle you have to make several attempts  with various pieces. If one doesn’t fit try another piece. There were times I was  too loyal to a writing idea, holding on for dear life. Everything around me is telling me to stop and try something else. I have to listen  and do  what my intuition says. I will keep the idea for future but move on to something new. This helps save time and mental exertion. When I let go I am energized to move in that new direction.

4.  Every piece is important.

You need all the pieces of the puzzle to finish it. This means every piece is critical and has its place. So it is with the writing process. The creative brainstorming, the topical research, the editing  and of course the actual writing. All these pieces  are valuable when writing  and can’t be left out.

5. Know what the end result looks like.

The front of any jigsaw puzzle box displays the finished work. You know  from the very beginning what the puzzle will look like after completion. As with writing I know what my assignment  is from the beginning. I know the number of words, the topic  and the expectations  from my client. All of that is ironed out in advance.

6. Pace yourself and be patient.

Close up of a clock

Working on a jigsaw puzzle takes time and attention. The more the pieces  the more the time. As with writing the bigger the assignment the more  the time. So, I don’t procrastinate rather I pace myself. Doing a little each day. This ensures a quality  product as a result.

7. Persevere to the end.

After the boarder is complete the real works starts with the inside pieces. It takes several attempts with  jigsaw pieces to find the correct fit. Perseverance and patience is the key. Even  taking a break, refresh yourself and come back. This tends to show up in crafting my headline or title. Many times I hit a brick wall and had to start over again. However, persevering  has resulted in some wonderful article and/or blog headlines I have been proud to write.

8. Visualize the completed picture.

Although you have the top of the jigsaw puzzle to see the end result, you still have to go a step farther. You got to visualize it in your mind and keep that image there the whole time you are assembling the puzzle. Forgetting and the work will become harder. You got to keep looking at the picture  to stay motivated and imagining the end result. Much like writing, visualize the completed article or post in your mind. What is the target or goal? How will it look in the end? Even what graphics, photos or images  will go along with the written words. What headline you will use. It is not just the physical writing but mental imagining.

9. Shut out negative talk and challenge yourself.

Empish is pulling a stretch band between both her hands. She has a grimice on her face as she attempts to pull and stretch out the band.

Ever tackled a large piece jigsaw puzzle? The 1,000 pieces or more? It can be overwhelming if it is your first time. People might discourage you  or your own negative thoughts might get in the way. But don’t listen and do it anyway. . . I have had to challenge and stretch my writing in order to get to the next level. Staying in the same spot will not produce growth.

10. Pay attention to details.

Jigsaw puzzle pieces are various shapes. Some are straight on one side while curvy on others. At first glance some pieces look identical but after closer inspection  you see the differences. These  differences  are what makes the pieces fit perfectly in their designated slots. So it is with writing. Pay  attention  not just to the writing process, but the specific words used. There are words  spelled  similar but have different meanings. Or words that sound the same  but don’t mean the same thing. Look closely when editing. Over the years I have improved my relationships with editors because I took the time to carefully comb over  my work before submission.

11. Got to use your hands.

Hands are writing with pen and notepad. They are using an accessible clipboard for the blind with a metal bar to slide down for each line on paper.

Assembling a jigsaw puzzle  typically takes  a lot of hand work. Holding a piece, filling its shape and size and then pressing it into place all take finger and hand movements. So, does writing. I use a mechanical keyboard  which is better for writers because the keys spring back and apply less stress on the fingers. I also wear a wrist guard to protect from carpal tunnel. Lastly, I do wrist, finger and hand exercises regularly to build strength and flexibility.

12. a feeling of accomplishment.

After persevering and working hard on a jigsaw puzzle  there is a feeling of euphoria. That sense of pride. You have a tangible object of your handy work. It is a wonderful sensation. Just like writing an article or blog post, I have that same feeling. Particularly, if it was  challenging to craft.

13. Assembling jigsaw puzzles stimulates the brain.

As you work on a puzzle parts of the brain and mind  are opened. You  use creative and problem solving skills along with boosting short term memory. The fact National Puzzle Day  is on Jan. 29   was my excuse to write this post. If you love a good brain teaser  or like solving riddles  and word games, celebrate this national day.

Not All Blind People Read Braille and Here’s Why

Daily Living, Literature, Special Observations, , , , , , ,
Empish Reading Braille Calendar with Her Fingers

Braille Literacy  Month is almost over and I am sharing  another post on the topic. Most people think  if a person is blind, which includes low vision and total blindness, they must know and read braille. For those that think this, I am about to burst your bubble because not all blind people read braille.

Some might ask if braille is a useful tool for reading and writing why don’t all blind people use it? If it opens up literacy, employment and independence  what is the problem? Well, there are several reasons why a blind person might not access this tool. But before I give those reasons let me clarify one point.

Decrease in Braille Reading Overall

Empish Using an iPhone

Braille reading is decreasing  overall because of advancements in technology. Devices like smartphones, audiobooks, and screen readers  allow blind people to access information electronically  verses reading printed braille. However, there are electronic braille devices like note takers and refreshable braille displays but a knowledge of braille is still required for their usage.

5 Reasons Blind People Don’t Read Braille

1. Braille is harder to learn later in life. There is a saying you can’t teach old dogs new tricks, and there is a nugget of truth in that statement. Learning braille is much like learning to read when you were a kid. You learned alphabets and numbers. then move to words and phrases. Lastly sentences and paragraphs. Although you were young and could learn quickly, it still took work, time  and tons of practice. Braille is no different. So, some older adults find it hard because of the work  and practice it takes to be proficient.

A braille watch is on the wrist of one hand with the top open. While the other hand figures out the time by pressing a finger on the raised display.

2. Medical reasons make it hard to read braille. IF a person has diabetic retinopathy, stroke   side affects or other  issues with their fingers and hands braille is hard to learn and read. It takes a light touch to read the dot formations. Even though the dots are raised  they are small and a sensitive finger is needed to read properly.

3. There are social stigmas  and stereotypes about blindness. Much like using a white cane, reading braille is one of them. If a person is seen reading braille the assumption is they are blind. Some people don’t want to have that label or disclose their visual disability  in such a public way. So, they won’t access it.

Empish Holding White Cane at Street Intersection

4. Regardless of social perceptions, reading braille is a personal acceptance of  having a disability. If a blind person has a negative attitude or is in denial about their disability, braille will be the last thing on their mind. Braille has such a strong association with blindness. Only after embracement will they be more open minded.

5. IF a person has  some eyesight  they might not read braille. Some who are low vision and can read with large print or magnification  might not learn braille. The idea is they have enough vision to do without it. But if  they are increasing the magnification to the point only a few words are on the screen or in the book, reading becomes unenjoyable, laborious and difficult. Also, reading comprehension skills suffer. But because they are not totally blind  there is little encouragement to learn braille.

My Own Braille Journey

I have been a part of the blind community for about 25 years and spent 10 of them working at a vision rehabilitation center. From my own personal  journey with braille and work experience  these 5 reasons  are my observations  and answer to the question why  blind people don’t read braille.

A black and white braille label gun with turn dial displaying both braille and print letters and numbers.
A black and white braille label gun with turn dial displaying both braille and print letters and numbers.

I am not a strong proficient braille reader. I made several attempts over the years  but  was not successful. I have enough braille knowledge to do the things that I need to for my life. That being proficient in alphabetic Braille is enough for now. I realize that reading books and magazines is a great thing to want to achieve but in all honesty my life is busy and I don’t have the time. I have learned to be okay with that.

Social Pressure to Read Braille

I also discovered that part of wanting to be a strong braille reader was because of social pressure. As a blind person you are supposed to be proficient in braille. That is what everyone expects and even sometimes demands. People are genuinely surprise when they hand me a book or document and I tell them I am not able to fully read it. There is this perception that braille automatically goes with blindness-no questions asked.

So whether you want to or not. Whether it makes sense or not. Whether you can or not. You do it or die trying! HaHa! That is what I was doing. I was trying hard to live up to this expectation that really did not fit who and what I am. I was not being authentic and true to myself.

Can You Bluff Being Blind? Read My Review on  James Tate Hill’s Memoire

Daily Living, Literature, Reading with My Ears Book Review, , , , ,
a blind woman wearing sunglasses and holding a white cane

The definition of the word Bluff, according to WordHippo, is an attempt to deceive someone into believing that one can or is going to do something. It is bravado or bluster that is superficial or not backed up. So, can you successfully bluff your way through life? What about a particular situation? How long could you do it before exhaustion or reality sets in? Or what about someone discovering and calling you out? Lastly, why would you do it in the first place?

Emotionally Challenging Book

Empish holding book on Blind Tom

These are some of the questions that ran through my mind as I read the book, Blind Man’s Bluff   by James Tate Hill. I have read many books on blindness over the years, but I have to say this book frustrated and annoyed me the most. I struggled finishing but knew I needed to soldier through to write this review. When I write a book review I work hard to focus on the positive elements in the story and try to understand  the author’s perspective. However, this book was emotionally challenging.

I know most people have occasionally bluffed there way  through something. Me included. However, Hill’s story of his vision loss was a bit extreme. I am getting ahead of myself and haven’t even told you what the book is about. So, let me do that first and then share my review.

Book Summary

Display of NLS Talking Book Player, Cartridges and Earbuds
Display of NLS Talking Book Player, Cartridges and Earbuds

The audiobook is available at Bookshare and the National Library Service for the Blind and Print Impaired . Bookshare says, Blind Man’s Bluff is a male writer’s humorous and often-heartbreaking tale of losing his sight—and how he hid it from the world. At age sixteen, Hill was diagnosed with Leber’s hereditary optic neuropathy, a condition that left him legally blind. When high-school friends stopped calling and a disability counselor advised him to aim for C’s in his classes, he tried to escape the stigma by pretending he could still see.

In this unfailingly candid yet humorous memoir, Hill discloses the tricks he employed to pass for sighted, from displaying shelves of paperbacks he read on tape to arriving early on first dates so women would have to find him. He risked his life every time he crossed a street, doing his best to listen for approaching cars. A good memory and pop culture obsessions like Tom Cruise, Prince, and all things 1980s allowed him to steer conversations toward common experiences. For fifteen years, Hill hid his blindness from friends, colleagues, and lovers, even convincing himself that if he stared long enough, his blurry peripheral vision would bring the world into focus. Finally, at thirty, faced with a stalled writing career, a crumbling marriage, and a growing fear of leaving his apartment, he began to wonder if there was a better way.

Concept of Bluffing

Fifteen years is a long time to pretend to be something you are not. But I know people do it everyday. This book  caused me to think hard and deep about  the concept of bluffing. Hill spent Too much energy pretending, or some would call passing, as a sighted person. I was amazed  at the elaborate methods  and schemes he use to keep people from knowing how bad his vision really was. At one point in the book, he explained he would rather let people think he was a drunk butthole  than blind. Now that is pretty deep. It made me question what type of world do we live in when it is better to be a drunk butthole  than blind?

For the Benefit of Those Who See Book Cover

I have known for years vision loss is equivalent to the fear of public speaking. People feel they would rather die than go blind. There is an inherent fear of blindness in our society. So, I get it. After all I lost my vision after 25 years of seeing clearly. I do understand and have some empathy. But this is the thing. . Pretending to see when you can’t is dangerous. Not only physically but mentally. We live in a sighted world  and have to learn how to adjust. Perhaps bluffing is a form of adjustment? But for how long?

I remember when I first went blind, I did the whole “fake it to you make it.” That approach worked for a while but I couldn’t sustain it long. After a while it became mentally wearing and I had to disclose my vision impairment. No, it wasn’t easy. Yes, I had to explain more than I wanted. But at the end of the day people  got it and I was able to conduct my business and get my needs met. If you are pretending all the time I seriously doubt  the results will be in your favor.

People Looked the Other Way

Another aspect of the book that frustrated me was how complicit Hill’s family, friends, teachers and co-workers were in his bluffing. Over and over again there were examples when people in his life literally and figuratively looked the other way. People knew he had a vision problem   and really didn’t talk or confront him making the pretending last longer. Plus there was no mention of therapy or counseling. All of this were missed opportunities  for Hill to get needed support. A disabled life is hard and having a circle of support  is critical to being happy and successful.

Disability Visibility Book Cover

Reading about Hill’s life triggered this question-are societies ideas of the disabled that awful? Do we need more positive and real role models for people to see the possibilities? I’m not talking about inspirational porn rather images of people living their life as capable disabled people. We are lacking in this but I do see improvements.

Can’t Bluff Blindness

By the end of the story Hill is coming to an understanding. It is harder to pretend than just be real. He  is noticing how much he is losing in his life. So, the answer to my initial question, can you bluff being blind is no. Well, maybe for a while but it won’t last and you will miss out on the beauty of what life  has to offer.

4 Ways Pharmacists Provide Accessible Prescriptions to the Blind

Daily Living, Health and Wellness, Special Observations, Technology, , , ,
Empish standing at the counter of her local pharmacy

The last two  weeks I have been struggling to get a prescription filled. Usually when I call my doctor my medication is ready in a couple of days for pickup from my local pharmacy. However, a new computer system  is causing the delay. As of this writing I am still without my medication. Going through this has caused me to reflect on the importance of  pharmacies and the people who work there. Yesterday, Jan. 12, was National Pharmacist day. I have been fortunate to have a good working relationship with my local pharmacy  and they know me by name.

Pharmacist Helped During Pandemic

Even when COVID  was at its peak the pharmacist  was very helpful and considerate of my disability. For example, when  the vaccine was first available the online forms to get a COVID shot were complicated. The online form also was timed which made it hard to complete quickly with my screen reader. My pharmacist  allowed me to bypass  this process and schedule my vaccines over the phone.

A prescription bottle laying on the side with medication spilling out.

My pharmacist also personally assisted me with  finding supplies to make it through  COVID. Products like Ibuprofen, rubbing alcohol  and hydrogen peroxide  were items highly recommended during those hard and difficult days. All of those supplies came in handy when I was overcoming the side affects of my COVID vaccine  and booster shots.

Pharmacist Sensitive to My Disability

I remember many years ago one of my regular meds changed. The shape and feel of the pill was different. My pharmacist alerted me. She was sensitive and aware of my visual disability and wanted me to be mindful so I could be confident I was taking the correct medication.

Besides these efforts to provide accommodations directly to me, pharmacies  offer free  accessible  prescription labels and info  to the blind community. This form of accessibility was established by the US Access Board’s Working Group on Accessible Prescription Labels and the FDA Safety & Innovation Act. Pharmacies responded to this government mandate  with the following measures:

1. Walgreens

Pill Reminder Device for prescriptions

Walgreen’s exclusively provides the Talking Pill Reminder. It’s a plastic disc with adhesive stickers to securely attach to the bottom of a prescription medicine bottle. The pharmacist records the info and  sticks the device to the medication bottle.

2. Envision America

Envision America provides an electronic medication label  called ScripTalk. This label is scanned and read from an app on a smartphone or the ScripTalk device.

Pill Reminder with labels

3. CVS  Pharmacy

CVS provides SpokenRX. Much like ScripTalk, this option also uses an audio label placed onto your prescriptions that are scanned and read by the CVS SpokenRX app from a  smartphone.

4. Accessible Pharmacy

Accessible Pharmacy sends medications and supplies through mail order. They deliver accessible devices, such as ScripTalk, large print  and braille labels; and special packaging options.

A prescription bottle with medication and a Pill Reminder attached to the top.

All of these efforts to make prescription drugs accessible gives blind folks independence and privacy. Plus avoiding serious problems like an overdose  or missed dosage. We all want to stay healthy and well so be sure to thank  your pharmacist.

How Much Do You Know About Braille? Learn More Reading These 15 Facts

Daily Living, Special Observations, , , , , , ,
Empish Reading Braille

January is the time we, in the blind community, celebrate Braille Literacy Month. Braille is a code created for reading and writing. This code, which is a series of raised dots on paper, has revolutionized the lives of people with vision loss because it has opened doors of literacy, education, employment, and independence.

History of Braille

Additionally, Louis Braille’s birthday was on Jan. 4 and this date is recognized internationally as World Braille Day. Braille was a Frenchman who lost his vision from an accident as a small child. His family enrolled him in the Royal Institution for Blind Youth in Paris. As a teenager there, Braille began the process to create a reading and writing system by touch. He continued to perfect the system and as an adult became an instructor at the Institution. Unfortunately, Braille’s method was not accepted by the sighted instructors and he died in 1852 never seeing his creation used by the blind.

Eventually, the code was accepted and today this system of raised dots is used all over the world. Yet, people still don’t know the story of the braille code  and why it is important. So, let’s get ready to learn more facts. Here are some interesting tidbits provided by the Perkins School for the Blind. Let’s see how much you really know about this writing and reading code.

15 Facts About Braille

Empish Reading Braill Bathroom Sign

1. Did you know braille was originally used by the French military not the blind? It was called “night writing.” Developed in 1819 by Charles Barbier and the French army, this system allowed soldiers to communicate at night without being detected.

2. Did you know Braille is a tactile code not a language? Many languages like Spanish, Chinese, Arabic, Hebrew and of course, English can be written and read in braille.

3. Did you know braille is made up of 6 raised dots? Braille words and symbols are composed in a cell with a variation of those 6 dots.

4. Did you know every letter, number, punctuation and symbol can be written in braille? This also includes music , mathematical and scientific symbols.

5. Did you know braille labeling  and info is available for prescription drugs? A clear braille overlay is added by the pharmacist on top of the existing prescription medication label. This form of accessibility was set by the US Access Board’s Working Group on Accessible Prescription Labels and the FDA Safety & Innovation Act.

A display of various accessible games on a table. Games include Connect Four, Braille Uno cards and Braille Dominos.

6. Did you know there are toys and games with braille? Some of the biggest classic family games like Uno, Monopoly and LEGO are all available in braille. Even when Mattel added the  Helen Keller doll to their Inspiring Women Series Keller was holding a braille book.

7. Did you know the original braille code didn’t include the letter “w”? The French alphabet doesn’t have the letter “w” but it was added later when using other languages.

8. Did you know some braille readers  can read faster than a sighted person? While a sighted person can read 300 words per minute, some fast braille readers can speed through a book at 400 words per minute. This is because of a light touch  and using both hands-one hand reads while the other is positioned to start on the next line.

Empish wearing red top with matching red braille facemask

9. Did you know braille is on consumer goods? Online you can purchase braille greeting cards, facemasks, jewelry, beauty supplies and candy. Just do a simple search and explore the options.

10. Did you know Braille takes up more space than print? One page of print is about 2 pages of braille. When I had a braille Bible it was like a set of printed encyclopedias.

11. Did you know there are two forms  of braille? uncontracted braille , Grade 1 or Alphabetic Braille, uses all 26 letters of the alphabet and is often used by children or people who are first learning to read and write. Contracted braille , Grade 2 or Literary Braille, is more complex  and most commonly used. It is a shorter version of braille

12. Did you know the word braille is not capitalized? Only when referring to Louis Braille is the word in caps. Although, some blind people disagree and capitalize braille regardless.

13. Did you know there’s an asteroid named Braille? In 1999, NASA’s Deep Space 1 probe flew past an asteroid while on its way to photograph the Borrelly comet. NASA named the asteroid 9969 Braille in honor of Louis Braille.

Empish at ATM

14. Did you know braille is on the keypad of  bank ATMs including their drive-throughs? The Americans with Disabilities Act (ADA) mandates all ATMs must be accessible to people with visual impairments. This includes drive-through ATMs  even though blind people can’t drive. This directive ensures blind passengers sitting in a vehicle’s back seat can reach the ATM and independently make a transaction.

15. Did you know most blind people don’t read braille? Many people who lose vision as  adults may not know braille. You can learn even more about this in my next post on braille later this month.

Be honest. How much did you know about braille before reading this post? A whole lot or very little? Well, hopefully you learned more than you did before reading. It is important that all people regardless of vision level learn about the importance and power of braille.