Disabled Author Confronts the Church in My Body Is Not a Prayer Request

Advocacy, Daily Living, Literature, Reading with My Ears Book Review, , , , , ,
A blue church with a steeple.

In July 2008, I was interviewed for an article on disability and religion for the Atlanta Journal Constitution. When the reporter spoke to me he asked me to describe the problems I was having attending and participating in church. Prior to my interview  other disabled people exposed the physical barriers. However, my story was different. I shared about the isolation and loneliness I felt going to church.

Active member Since College

You see, ever since I was a college freshman I was an active member of my church community. Attending services  and Bible study weekly, tithing regularly and participating in church activities like choir, campus and single ministry events. Even volunteering to serve in children’s  church. My dedication and commitment didn’t stop even after losing my vision. I continued to be an active member of my congregation. But by the time the reporter talked to me for that AJC article I was about done. I was exhausted  and was losing my desire to be a devoted parishioner.

Now, let me be clear. I was not struggling with my relationship with God per say. It was more about His people and how they treated me because I was disabled. This is why the audiobook My Body Is Not a Prayer Request: Disability Justice in the Church By Amy Kenny, spoke so deeply to me. The author is disabled  and a Christian. She writes  her story from this perspective. She gives many examples of how her body  is used as a call to action to the church. She wants change and the church to be more inclusive.

Kenny is physically disabled, using a cane and motorized scooter, she not only shares about the physical but attitudinal barriers  and microaggressions Christians  impose on people with disabilities. This goes back to my explanation to the AJC reporter. Let me give you some examples from my own life.

My Life Examples

  • A woman was walking in my subdivision and stopped me as I was getting into my ride. She gave me unsolicited advice she got from God to tell me to eat more carrots and drink more water to cure my vision loss.
  • A man got angry  when I didn’t stop to here his healing testimony. I was trying to board the bus with my groceries and didn’t have time. My bus driver was miffed because he only shared it with me, as if disabled people needed spiritual encouragement more.
  • A woman frantically flagged down the car I was in in the Walmart   parking lot. She wanted to pray for me. She saw me walking and getting into the vehicle with my white cane. She thought I needed prayers. When she was told this was highly inappropriate she got defensive and annoyed.

Already Healed and Made Whole

A disabled man at a church service. He is sitting in his wheelchair in the aisle next to one of the pews.

Kenny strongly communicates that people with disabilities don’t need to be fixed, cured or healed. As believers our bodies are already sanctified and whole. We  are already  new creations in Christ. She asked do we need to call these kinds of behaviors out or just take the high road?

I have done a little of both. I realized that my congregation  didn’t know what to do with me or people like me. Sometimes they did nothing. Other times it  was the wrong move  causing emotional harm. Still other times, I called it out receiving an apology  with a commitment to change.

What I came to realize, and Kenny too, is My disability doesn’t need to be erased in order for me to have a full, happy and abundant life. This thought  not only shows what people think about me but also reveals people’s notions about God. Kenny says people don’t focus on Biblical passages where disability is celebrated because it doesn’t fit their narrative. Instead there is a  concentration on those scriptures where  disability is a result of sin and disobedience. We are uncomfortable around disability.

Challenges Not Just in Church

Kenny shares how these thoughts and attitudes are not just in the church. She goes into great detail about her personal life. How she wasn’t believed  during doctor visits. How she dealt with housing discrimination. How she was hindered at the DMV from getting her disability  car tag. I have dealt with similar  situations too. I got used to it because this is how the world operates. Yet, when it comes to church I was expecting a different outcome. I was expecting a better result. Since we are called to be like Christ I was looking forward to encouragement, love, grace   and embracement. I already knew the world would b hard on me but I was shocked and deeply saddened when the same things happened at church too.

Kenny is calling the church to change. I applaud her for that. The work and effort she is making to make the church a more inclusive place is admirable. But I have to say I have moved on. Perhaps she is more optimistic than me. I have left the church all together and don’t attend worship services anymore. The constant battle with the church plus the world was too much for me.

Don’t Attend But Made Peace with Church

Empish sitting on mat in a yoga prayer pose

Today, I have made peace with the church. Even though I don’t attend anymore  I still believe in community worship. Perhaps  one day things will change and I will  want to come back. But in the meantime, I honor my relationship with God by the way I live my life and treat others. Since I know what it feels like to be on the other side, I work  daily to be kind, considerate  and nonjudgmental.

If you want to understand more about disability  and the church, I highly suggest you read this book. Kenny  gives numerous examples of ableist behavior. She also gives tips on how to be a better Christian ally to those of us with disabilities.

Netflix Says Goodbye to DVDs and I Did Too

Daily Living, Entertainment, , , , , ,
A hand is inserting a DVD into the player.

On April 21 Netflix announced they were stopping their DVD subscription plan. The change will take place in September. I wasn’t surprised. As a matter of fact I have already  stopped my DVD subscription. I did it back in February. Why? Because I already saw the writing on the wall.

Noticed Decrease in DVD Movies

Close up of a clock

Last year I began to notice that  movies I placed in my cue were going more often to save. Meaning the DVD wasn’t available and I would have to wait. Well, that  typically was not a major problem in the past. But  the wait was becoming longer and longer and sometimes the DVD was not available after all. Perhaps this was due to the pandemic and movie theaters shutting down. Or maybe due to the increase in additional streaming services.

Noticed Decrease in Audio Described Movies

Next, I noticed more and more movies weren’t available in audio description. As a blind person I rely on audio description to give me verbal details about the movie. It provides info on facial expressions, body language, wardrobe, race or skin tone. Audio description also explains the action in the movie  and reads scene subtitles.

Empish watching TV. She is sitting on sofa pointing remote control at TV.

Initially, Netflix was one of the better choices  for audio described DVDs. Other options required  purchase  only or were free but too limited. Over the years, they continued  to increase their offerings of audio described content. They would actually label the movies on the DVD site  so you knew in advance whether the movie was accessible or not. This was a great benefit to the blind community. They continued this commitment  when streaming was offered too. Now, when I go to the Netflix app and search for a movie the audio description label is right at the top near the film’s name.

Remembered When I Signed Up

I remember when I first signed up for Netflix DVDs. A guy I was dating at the time suggested it because it was such a great deal. We got the monthly DVD subscription of unlimited movies  for under ten bucks. That meant we  could literally  have date night multiple times a month on the cheap, which worked great for the both of us. The movies came quickly in the mail enclosed in a red paper returnable envelope. The turnaround time  was also fast with a   day or two. My relationship with the guy didn’t last but my Netflix subscription sure did!

Row of about 8 residential style mailboxes

Now, unlike Blockbuster and Redbox, I didn’t have to leave home. Since my transportation is limited that was  an excellent perk. I would just go to the Netflix website and place a bunch of movies in my cue. Then sit back and wait for them to arrive. They would come one at a time and  as long as I return the previous one I would continue to get movies. This was a set up you couldn’t beat with a stick.

Added Streaming to Plan

When Netflix launched its streaming service I stayed a loyal customer. I just bundled my plan  getting both options  for under twenty bucks a month. I did this because many old and classic movies were not available on streaming. Even documentaries, which I absolutely love, were only available on DVD. Plus if I wanted to  watch  a particular actor  or genre I could easily rent all of them hassle free. I did this a couple of times, watching all the Sidney Poitier, Rocky and blaxploitation films. What a treat!

Sometimes the audio description was on DVD but not the streaming option. Newly released movies were usually  on DVD sooner than streaming. So, having both plans worked perfectly for me.

Time to Say Goodbye

Yet today streaming is in and DVDs are out. Times are a changing. And I realized I got to change with it.

So, I have said goodbye toDVDs. It has been a good run.

Are you a Netflix DVD subscriber? If so, what’s your plan  when it stops? Were you surprised by the announcement?

No Paper Or Plastic. Instead I Use Earth Bags for Grocery Shopping

Daily Living, Food and Cooking, Special Observations, , , , , , , , ,
A black man delivering a bag of groceries. He is smiling and wearing a baseball cap and crewneck T-shirt with the word "delivery" across his chess. The bag of groceries contain a baguette, head of iceberg lettuce and a pineapple.

I haven’t gone totally and completely green. Rather opting for simple and small changes to help the planet. One  adjustment that  is now a routine part of my life is using reusable grocery bags, or what I call earth bags. I made this major modification several years ago and now it is a no brainer. . I literally don’t even think about it anymore. I just quickly grab them from the pantry doorknob and out the door I go.

When I am in the checkout line I strongly insist, even demand, all my groceries must be bagged in them. No paper, no plastic, thanks. I feel really good about this small habit because I know how much plastic is harmful to the environment. I know I can’t totally rid my life of all plastics but this little  practice makes a huge difference. And here are some more reasons I say, “No paper, no plastic.”

1. I want to help save trees.

Two brown paper bags of groceries sitting on a hardwood floor. The bags contain apples, bag of bagels, a baguette and head of iceberg lettuce.

I used to think paper bags were better than plastic. To a certain extent this is true. Even though they will break down better they are still destined for the  landfill. Also, they are harder to find. When I was growing up the question was, “Do you want paper or plastic?” I  would usually  respond with  paper, please. Now  many stores I frequent  don’t even offer paper , just plastic. When I use my earth bags I use less paper.  In my mind this gesture can save a tree or two.

2. Don’t want to be a Litterbug.

Plastic bags usually end up as litter because of carelessness.  They are so simple to use and very lightweight, you just forget about them. Look around your community and you will see plastic bags  floating around. Many communities, including mine, have launched don’t litter/keep our community beautiful campaigns.

3. Plastic bags are flimsy.

Empish standing with grocery cart in the checkout line.

We all have been in the checkout line. The bagger  is placing only one or two items per plastic bag. Then you walk out the door trying to carry a gazillion  plastic bags. I really hate that! Just another reason I use earth bags. Plastic bags are so thin and flimsy. They don’t last. If you got canned goods or heavy food items forget it. They rip and tear. To avoid this groceries are double bagged yet that is more plastic.

4. Plastic bags take up space.

Which leads to my next reason for using earth bags. After carrying those gazillion plastic bags home, what do you do with them? You can reuse it as garbage bags or to store items. But it is too many of them for all of that. They can populate like roaches. Taking over your home. Cluttering your kitchen drawers and closets. So, you know what happens next? They go in the trash and off to the landfill.

5. Earth bags  fit better in my metal grocery cart.

Empish is pulling her metal shopping cart in one hand while holding her white cane in another.

I take Paratransit, a transportation service for the disabled,  to the grocery store. This could mean the bus driver giving me the evil eye as I try and board with a bunch of bags. Realistically, that doesn’t work. So, I got a metal grocery cart. But placing all those plastic bags in the cart  doesn’t work either. But earth bags do. I can usually sit two bags side by side. Then place two more bags on top. That is a total of 4 bags. The metal cart rolls smoothly on and off the wheelchair lift on the bus, making me and the bus driver happy. Once off, I keep it moving and roll right into my house.

6. Earth bags are just plain easier.

It doesn’t take rocket science or  a lot of work to use earth bags for my grocery shopping.  I just grab and go. Also, they are easy to maintain. Most of my bags are made of strong and durable fabric that last a long time. And if they get soiled  or dirty just a  quick cleaning in the washing machine and they are good as new. For my reusable freezer bags, a fast wipe down with  a soapy dish rag and they are ready for the next shopping trip.

It’s Earth Month and April 22 is Earth Day! Have You Gone Reusable Yet? A tiny change like bringing your groceries home in reusable bags can make a large difference. Single use plastic bags are bad for the environment. Use earth bags instead.

It’s All in the Wrist:  How I Avoid Hand and Wrist Pain as a Writer

Daily Living, Health and Wellness, Special Observations, Technology, , , , , , , , , , ,
Two hands typing on a mechanical keyboard. The right hand is covered in a wrist guard.
Two hands typing on a mechanical keyboard. The right hand is covered in a wrist guard.

I have been typing and writing on a keyboard for as long as I can remember. It all started in the 9th grade when I took a high school typing class. It was on one of those old-fashioned Smith Corona  typewriters. Then I moved on to a computer using word processing software. My very first job I was a clerk typist  and crafted memos, letters  and other correspondence. Eventually I moved to using a mouse  giving my hands, fingers and wrist a break. But only to return to the keyboard after losing my vision. So, when I look back that is a lot of years banging  and clanging on a keyboard. And you know there has got to be some wear and tear after all this time.

Vintage typewriter on a wooden desk

These days I am feeling pain. It all started with  a small but consistent throb across the top of my right hand. Now it has moved to the bottom of my left wrist. I have not received a medical diagnosis however I am told this  is all symptoms of Carpal tunnel. This is probably true. As a personal and professional writer what am I to do? How do I keep enjoying the thing I love  the most and  avoid pain? Here’s how I do it and you probably can too.

Use Wrist Guards

When I first noticed the pain, I ignored it like most people. I was thinking over time it would just naturally go away. I told myself just take more breaks and you’ll be fine. But we all know  that is not how it works. When the pain got to be so bad my hands were throbbing at night disrupting my sleep, I got up and did something about it.

I purchased  a right hand wrist guard. It covers the top of my hand  to the middle of my arm. It decreases the pain exactly where the throbbing is located. It also  covers my wrist keeping it stable. At first it was awkward and clunky to type with  but over time things improved.

I noticed a change pretty quickly  and could have kicked myself for not doing it sooner. So when the pain transferred to my left wrist I didn’t wait around. I got a wrist guard for my left  and use that one too.

Exercising with Weights

During the pandemic I had a physical therapist come to my home to help with my right knee  pain. She gave me exercises to alleviate the pain and also help with balancing and strength. I shared with her about my hand and wrist pain and she gave suggestions  on what to do. She specifically told me to watch my movements  to see why I was in pain and then adjust myself.

Empish doing arm exercises with hand weights

So, I began to notice How I used my hands and wrist a lot to pull up from a chair  or to brace myself on a countertop. I began to stop doing that and the pain decreased. Sometimes to avoid pain it is about reviewing how your body moves and observing and correcting your posture.

Yesterday, April 18 was National Exercise Day. However, I exercise  all the time, several days a week. One type of exercise I do is lifting weights. Now, I am not trying to be a body builder  so I use small and light hand weights. I have noticed when I lift weights regularly  my hand wrist and even elbows  feel much better. I typically do a set of bicep curls. A variation of arm lifts, holding a weight in each hand and raising them above my head, then to the side, to the front and lastly to the back. I also do hand and finger strengthening exercises. I will stretch wide each finger and thumb. I will ball my hand in a fist and then gently release it and then I do a set of wrist  rolls, turning clockwise  and reverse to counterclockwise. All of these exercises keep the circulation flowing  and help my hands and fingers feel better.

Purchase Mechanical Keyboard

Since I don’t use a mouse anymore the keyboard is an essential piece of equipment for writing. I learned about mechanical keyboards  because they are great for writers, gamers  or anyone else who types a lot. I purchased one and it has been a God sent. The keys are springy   reducing the pressure on my fingers. I use a light touch and avoid pain.

Taking Computer Classes

The last thing I have done is take  online computer classes. Now what does that have to do with wrist and hand pain? A lot. Over the years I have gotten sloppy with my typing  and needed to tighten things up. I noticed the large amount of keystrokes I was doing were not necessary. All this extra movement and repetition  was causing pain and discomfort. The classes  instruct me to use shortcut keyboard commands. This  allows for less keystrokes to accomplish the same task. I have also slowed down on my typing speed and paying more attention to what I am doing. Less errors means less pain.

Empish Sitting in Front of Laptop Wearing Headset with Microphone

Like I said I love writing. This means I had to make changes, and ever since I did I have avoided hand and wrist pain. Have you struggled with wrist and hand pain? If so, share your home remedies or tips.

Self-care is Accessing  and Knowing Your Numbers

Daily Living, Health and Wellness, Special Observations, Technology, , , , , ,
Empish Taking Temperature with Talking Ear Thermometer

Although April 5 is National Self-care day, I  make strides to care for myself everyday of the week. A big part of my effort is knowing my numbers. When I know what my numbers are I have more control of my health and well-being. Resulting in better decisions and peace of mind. This is a direct connection to self-care because I am doing things  to improve my life, reduce stress and be happier.

So, what are these important numbers? How do I access them? Everyone is different but for me it is my weight, blood pressure and amounts of medication. Accessible medical devices help me to know these numbers and take care of myself.

Talking Bath Scale

A bath scale sitting on the floor. It has one foot positioned on it.

The bath scale  can be a friend or foe. Believe me I get it. Who wants to step on the scale  and look at their weight? I used to weigh myself  frequently  but today I do it a few times a month, just to see where I am. I am no longer a slave to the scale but I do like to check  to be sure I am not gaining anymore weight. I use a talking bath scale. I just step on and get my weight  verbally.

Talking Blood Pressure Monitor

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

Uncontrolled high blood pressure can lead to all kinds of medical problems like heart attacks and strokes. Do you know your blood pressure numbers? Do you know the differences between normal and high? Just like the talking bath scale, I check mine with a talking blood pressure monitor. And since I take medication I  go a step farther by tracking my numbers on a spreadsheet. This allows me to see on a regular basis how I am doing  and make needed lifestyle adjustments.

Accessible Medications

Mismanagement of prescriptions  can easily happen, especially if you have vision loss.  Knowing what dosage to take. When to take it. What you are even taking  in the first place can be overwhelming and confusing. Errors like taking the wrong pill, missing refill dates or taking expired medication  are unsafe and can lead to a medical emergency.

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

Typically, prescription information on the bottle and documents are in small print and not very accessible. But help  to know your numbers is now available. Since 2012 legislation was passed to make prescriptions more accessible. Resulting in changes to how medications are administered to people with vision loss.

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

Today, we have multiple options to access medications. Prescription information is provided in braille and large print. I shared about all of this in a previous post you can read for more details.

Talking Thermometer

Another important number is body temperature. During the height of the pandemic  we were all checking our temperature constantly. Remember those days? Whether at home or in public everyone  was Lazer focused on this number. During that time I purchased a talking thermometer . Although I don’t check my temperature as much anymore, I am glad I have it on hand. I never know when I might be battling a cold, fever, flu or even COVID-19.

Self-care is not selfish. Rather it is making yourself a priority so that you can care for others. If you are not emotionally or physically doing well and don’t know your numbers  how can you give and contribute to others and society? You can’t. So use this day and everyday  to care  for yourself.

Questions About Eye Donating? Read These Insightful Answers

Health and Wellness, Special Observations, , , ,
A side view of an eyeball with a white background. It has a dome shape showing optic nerves and blood vessels.

When most people think of organ donations the heart, kidney, liver and lungs come immediately to mind. Yet donations of eye tissue is just as important. According to the Eye Bank Association of America more than 85,000 sight-restoring corneal transplants take place each year. Out of these transplants, 95% are successful. Plus, the wait time is one of the shortest.

But what is an eye donation in the first place? How does it all work? Can anyone be a donor? These are just a sampling of questions addressed in this blog post. These questions and answers  are provided by the Donate Life America and LifeSource. March is National Eye Donation Awareness Month  and an opportunity to bring attention to this special gift of sight.

1. What is an eye donation?

Even though the phrase “eye donation” is used there is no whole eye transplantation. Often only corneal tissue is recovered  and used.

2. What is The cornea?

It is  the clear dome-like window covering the pupil that lets light pass through to the retina which allows us to see.

3. Why is corneal transplantation so common?

A healthy, clear cornea is needed for good vision. If an injured or damaged cornea gets swollen or scarred vision becomes impaired.

4. Can anyone give an eye donation?

Yes, most people are potential donors because age, eye color and eyesight are not factors for donation. Also, a donor’s blood type does not have to match the recipients blood type. This is good news because everyone is a universal donor for corneal tissue.

5. What other ways can eye donations be helpful?

As mentioned before, whole eye donations are not used for transplant. Rather,  they are used for research and education. Advancements have been made in the understanding of the cause and effects of conditions such as glaucoma, retinal disease, eye complications from diabetes and other sight disorders. This research can lead to new treatments and possibly cures.

6. If I wear glasses or have poor eyesight can I still donate?

Sitting on a desk is a pair of glasses resting on an open book with a magnifier nearby.

Yes. People who have poor vision and wear glasses, or have had previous eye diseases or surgery, can still donate. If for some reason  the eye donation is not suitable for transplant it can be used for medical research and education.

7. How does eye donations and funeral arrangements work?

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

There should be no complications  with eye donations and making funeral arrangements. It should be only a few hours to coordinate the donation process with the funeral home. Additionally, an eye donation should not prevent having an open casket service.

8. What is an eye bank?

Eye banks are facilities where cornea donation and ocular tissue for transplant, research and education are facilitated. They are nonprofit organizations  and available in all 50 states.

9. How do I donate my eyes?

The best way is to enroll in the registry  for your state. Registered donors receive written confirmation of their enrollment. Plus you can indicate organ and eye donation when you get a driver’s license. It will be displayed  on your driver’s license  card you are a donor. But be sure to alert your family so they are aware of your intentions.

These are some of the most frequently  asked questions about eye donations. But for a deeper dive check out more details on the  eye donating process.

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.

5 Pieces of Popular Writing Advice I  Ignore(and You Should Too)

Special Observations, Work Life, , , , , , , , , ,
Young Black man sitting on bench in front of a building writing in a notebook

As a writer I am usually open to tips, tricks and techniques to make my writing better. I have read tons of blog posts, newsletters,  articles and books  to improve  my work.   I have even taken a class or two.

With that being said, I have observed  a trend of common and/or popular advice  that I have chosen to ignore. I understand well intentioned advice is not hard rules. Rather writing advice is just that, advice. You can take it or leave it. I have been a writer for many, many years and over time  I have learned new and better ways to hone my craft. So, here are 5 popular pieces of writing advice I choose to ignore and you probably should too.

1. You Must Write Everyday

This standard writing advice I have heard since day one. It implies if you don’t do it you are not a real writer. You are a fake, fraud and not serious about your craft. But really, is there anything you do daily without fail? I am not sure about you but there is little I do everyday   with no missteps. Well, maybe brush my teeth, take a bath  and eat something. Everything  else is up in the air. It is like life—it ebbs and flows. I am flexible. If I choose to write everyday it is because I am on a strict deadline or am excited to do it.

2. You Must Guard Your Writing Time

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.

I used to be a strict type A personality. I had my whole day mapped out in ink not pencil. I made little room  for changes to my schedule. I was serious about time management. I treated my writing time the same way. But as I just mentioned life happens  and I quickly learned to bend.

With this drill sergeant mentality writing became a chore  and no longer fun. I have a passion and love for the written word. So, when these rigid feelings start creeping in I take a break. I make room for mid-day chats with friends, a nap or even a movie. I don’t hold fast to a a particular  writing routine. My Time can be derailed  but I don’t get stressed out about it anymore.

3.  You Must Soldier Through Until Done

This advice might work in other areas of your life like exercising, cleaning the house or paying bills. However, writing is a creative  venture. So, if you are tired, sleepy, not motivated  the words  won’t always come. We must accept creative burnout and replenish our inspiration.

Empish Yawning

Have you ever gone hard on a writing assignment? Then exhausted afterward? Sometimes our bodies and minds are tired so stop writing. Listen and take care of yourself.

Or maybe you are trying to force a piece of writing when it is obviously not working? I’ll be the first to raise my hand and answer yes to this one. Many times I have wanted so badly  to make a piece of writing work only  to be frustrated, disappointed  and weary.  I was resistant to stopping  and going in a different direction or scrapping it all together. It communicated I was a failure and I was unwilling to accept that. But I  have come to realize  it is just the writing gods dropping me a hint  to be open to change.

4. You Must Use Traditional Sources

You know what I am talking about. Using those same tried and true sources to get your inspiration  or resources. Writing prompts, best selling writing books, writing magazines or newsletters. The list goes on and on. I am not saying to stop using those sources  because they have real value. Instead I am saying open yourself to other possibilities. I am a content creator  so I  embrace all kinds of sources. I have found writing ideas in the most unlikely places, talking to interesting people  or reading  unusual things. Even reading about a frog inspired me to write.

Frog jumping in mid air

For example, one of Mine is the National  and International Daily Calendars. These calendars are chalked full of remarkable, funny  and quirky holidays. They are not a traditional writing tool but offer  events I can write about. March 3 is International Writers Day. This observation inspired me to write this very post you are reading. Bear in mind places of inspiration will change over time as you personally grow and change.  You will notice  sources that worked before won’t  work today. Be willing to adjust to this new discovery.

5. Basic Writing Rules Can Be Broken

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.

There are some writing rules I don’t break. This is where I stand firm because I am a professional writer. My writing is not just for fun but employment.  So, I’m serious  about the work I put out in the world. People are reading  what I write and I believe in social responsibility. Words have power.

Those standard writing rules of sentence structure, grammar, punctuation, editing  and staying true to my voice I don’t compromise. When you slack off on these traditional writing rules  your work  will loose its impact and power.

I have shared my writing advice to ignore. Now it’s your turn. What are some writing advice you have avoided? Why do you choose  to ignore it?

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.

Black  Blind Journalist Publishes  the 1930s Detroit Tribune

Advocacy, Special Observations, Work Life, , , , , , , , , , ,
Stack of Newspapers

Before Black History Month is over, I am sharing a story about a Black man with a visual impairment. He was  a poet, journalist and newspaper publisher. I learned about his life from the Blind History Lady and was compelled to share it here on my blog. As a Black blind journalist myself, it is not everyday I come across  an intriguing story like this one. So, here goes.

Early Life and Education

Sitting on a desk is a pair of glasses resting on an open book with a magnifier nearby.

James Edward McCall  was born in 1880 in Alabama. He was the child of former slaves. As a young child, James had what they called “weak eyes” but the diagnosis  and cause were unclear. To help compensate his mother would read to him. She was a seamstress and his father a cook. They deeply believed in education  and James capabilities  and sent him to school. In 1900, he graduated from Lincoln Normal School for Colored Students and proceeded to Howard University Medical School in Washington DC. During his   first year, he contracted typhoid fever and lost the rest of his sight. Consequently he was unable to complete his education there.

Vintage typewriter on a wooden desk

James, now totally blind, didn’t stop pursuing an education. After he accepted his blindness, he went to Albion College in Albion, Michigan.; graduating in 1907. He was able to accomplish his goal by hiring other students to read class work. He had an interest in journalism and took all the required courses plus taught himself to type. Resulting in the skills to write his own assignments and type his own poems and short stories for publication.

No Journalism Job But Published Anyway

He also attended the Page-Davis Advertising School in Chicago and the National Press Association in Indianapolis. Now with his education behind him, James returned home to find employment. He applied for journalism positions in his hometown but no editor would hire him. So, he took a job working as an insurance salesman. The slights he experienced trying to find a journalist position motivated him to become more socially active. He published a pamphlet called The Colored Servant Girl. This small infrequent publication exposed the true stories of southern Black servants who had experienced little advancement. Within these stories James spotlighted their dignity  and work ethic. As publisher, he also included his poems dedicated to them.

In 1913, his future wife, Margaret Walker, came to work for him. She was a graduate of Hampton Institute in Virginia and Tuskegee Institute in Alabama. Under his supervision, Margaret  was his eyes, reader and personal assistant.

Launched First Regular Newspaper

In 1917, a few  years after he married Margret, James launched his  first regular newspaper called  The Montgomery Emancipator. It published typical news stories like  obituaries and ads from African American businesses. The paper included photographs and cartoons from the Black perspective.

After his father died in 1920, the Ku Klux Klan threatened  his family if he continued to publish his newspaper. So, James and his family left and moved to Detroit where his younger brother already lived. James continued to be a newspaper man   there and from 1925-1930,  he published and edited the local Detroit Independent Neighborhood newspaper. In 1933, James purchased and edited the Detroit Tribune, which was a  Black owned and operated newspaper. James and Margret purchased a home nearby to travel easily back and forth.

Published the Detroit Tribune

Two pressmen are working in an old fashion pressroom with an old stop-the-presses type press.

The Detroit Tribune reported and discussed hard-hitting, intense issues facing the Black community both locally and nationally. James’ Editorials were meant to provide information and encourage the Black community  to  be more active. James was no hypocrite. He shared  about his  own advocacy helping Black voters to register and get to the polls.

Those early years publishing the Tribune were lean. The challenge was in circulation which directly connected to ad revenue. The bigger the circulation the more opportunity for ads  and income. This is not uncommon and still persist today with many  newspapers. But since the Tribune was a Black publication, circulation was small unless James pursued white readership. Mainstream white owned businesses were not willing to advertise in a Black owned newspaper. The newspaper told the news of the Black community from the Black perspective. Even though this was the case, there was still an interest from segments of the white community that helped increase circulation and advertisements.

A closeup of various newspaper headlines

James had to balance the wants and needs from both communities. If he focused too much on the white advertisers  he could lose his Black readership. If he focused totally on his Black readership  he would  lose his white advertisers. James was able to balance the scale by  staying honest. He told the truth and kept opinions to the editorial section. He reported the news in an accurate format with no political slant. The editorial page led with strong, purposeful, opinion pieces. Each encouraged peaceful but meaningful and detailed calls to action.

A Race Man

This strategy was in line with James’s philosophy of integration. James considered himself a “Race” man, meaning he dedicated his life to the advancement of Black people. The Tribune highlighted successes of Black leaders to inspire young Black readers to aim high and expect more. His editorials spoke out against police brutality. Articles and editorials called for more Black men to be hired on police forces and fire departments. The Detroit Tribune is still credited for the integration of the Detroit fire and police departments.

He was a member of the Urban League and the NAACP. Through his membership and paper, James hoped for peaceful integration between the races. In 1937, James took an active role in supporting the anti-lynching legislation proposed in Congress. Much like Ida B. Wells newspaper, Articles told of lynchings the white newspapers did not cover. James wrote letters to Congressmen and U. S. Senators. Their responses were printed for  accountability  to voters and encouragement to readers to write their elected officials.

Focused More on Race and Paper Than Blindness

Empish Reading Braille

It seems that James challenges were more on race and running his newspaper than his visual disability. Although, Michigan had few services for the blind available, James learned to read and write in braille. While his assistants read from other newspapers and magazines, James took notes for future stories, interviews and editorials. He used a slate  and stylus or braille notetaker.

James retired as a newspaper man in 1945. He spent his remaining years focused on his poetry. He died in 1963. Yet, his legacy lives on in his children and grandchildren. They understood and never took for granted the risks James and Margaret took to better themselves and the Black community.