Video

Laughing is Good

17 Sep

Unmaking Time:

As you can see from my little comedy act, I  enjoy doing  videos. I have been wanting to do them for a long while, but I have been too self-conscious due to my speech impediment. This might seem odd to those who know me since I love public speaking. The difference is that when I public speak, I usually have an interpretor. When I sense  my audience is not able to follow, I can repeat myself or have my interpretor help. With doing these videos, I have much less control. I don’t know what people understand, and what they don’t.

During live performances, I can also read vibes of people. I can change the direction of my presentation. I can make make them more serious or lighter. With these videos, it is purely me. There are not live audiences to guide me. scary stuff indeed.

So even though  I feel exposed doing videos, I want to do them. I believe God is calling me to glorify Himself by just being myself.

What about you? Are you not doing something that brings you joy because of a specific fear.  Whatever the fear, I pray you will allow God to walk you through it.

Keep being brave.

 

Notes:  The artificial voice that you hear is from  an Apple app called Proloquo4Text, which is assistive technology for those of us with communication difficulties. I highly, highly recommended it.

These particular corny jokes, I got from the Best Corny Jokes app. (Yep, there’s an app for that.)

Video

My Big Break (or Maybe Not)

13 Sep image

So, I  have a goofy side. And sometimes i enjoy using it to make my points.

I am taking a risk with the video down below. Even though I think it has an important message, I chose to display my goofy side to communicate it. Because I have cerebral palsy, my goofy side tends to reinforce the perception that I am not very intelligent.

However, I like showing my goofy side. I enjoy embracing my inner child. I don’t want to be ashamed of that any more. People will believe what they want about me, and I cannot control that. It is okay, though, because I believe Jesus is best glorified when we don’t hold back for the sake of appearances. (Please remind me of this after the first unkind comment I read because I am pretty sure I will be crying my eyes out.)

In my opinion, we don’t need to get all caught up in the  things that …um…we are not the best at.  No one can be a master of everything, right?  Of course, that doesn’t mean we can’t enjoy ourselves doing the things that aren’t in our wheelhouses. I  do think, however, we need to rejoice more in what we do well. Watch and you will understand..

Unmasking Time:

Okay, I confess. It doesn’t bother me that I cannot sing to save my life. I love singing anyway, and that is probably because I am a ham.

Seriously though, for many years I missed alot of enjoyment at family gatherings and reunions. Why? Because I was unable to set up, serve, or clean up due to my cerebral palsy. Instead of fully engaging my family members with stories and humor, I spent way too much mental and emotional energy on the fact I couldn’t pick up trash or do the dishes. I felt less than a woman.

Now, I accept that I  am not Susie Homemaker, and that is okay.  I don’t even want to be. I don’t have to dwell on what I am not. I am a child of God, and that frees me.

What about you? What are you not good at? Whatever it is, it is okay. You are good at others things. Rejoice in that.

Keep being brave.

A Honest Look at Depression

11 Sep img_0029

In my last post,  I shared a poem of mine that was selected to be in an exhibition aimed at increasing mental health awareness.  The following poem of mine was not accepted into the exhibition.  I feel bummed out about that since I feel like this poem convey even more emotion then the first.. No need to worry though. I have this lovely blog where I can publish whatever I want. How cool is that?

Not only do I  have cerebral palsy, I deal with depression.  I do acknowledge my cerebral palsy contributes to my depression. I  mean, how can it not? I have had to deal with frustrations and being misunderstood from the time I can remember. Plus, cerebral palsy is a brain injury of some kind, and depression is a result of imbalanced brain chemicals. To me, it seems like the cp would effect the depression.  However, the cerebral palsy isn’r the sole, or even largest, factor.

First, I  know people with cerebral palsy who don’t deal with clinical depression.  Secondly, I have family members who deal with depression but not physical disabilities.

I hate depression. I  see no purpose in it. At least, I see some some purpose in my cerebral palsy in that I get to interact with the universe differently, which challenges the status quo of life.

To me, depression is a complete disconnection, a glimpse of hell. Mere sadness, it is not.

 

Sadness vs Numbness                                                                                                        by Jody Michele Powers

Give me sadness
With its grey skies
My heart ripped into two

Let me sob
Let listen to gut wrenching songs
Let me write dark and dreary poetry
Let me share my woes to all
About the unfairness and hurt
That my senses perceive whenever I breathe

Yes, give me this sadness, that has a clear cause
This sadness that I hate: Give me that: For my own sake

Sadness is natural; a part of human life
Barely on the spectrum
When I compare it to Numbness.

Grey skies vs blackness nothing
Heart in two vs non-feeling beats
An inorganic place called the Abyss
Where Numbness holds myself
Not song, word, or voice allowed
Not even the grace of sadness can present its self
Just me and Numbness
And empty thoughts of blankness
No one in; no one out
Unbearable Disconnection

The world’s simple notion of depression as sad sadness
Gives no justice to the Numbness of the Abyss

So, please, may I have sadness?

 

Unmasking Time:

Do you deal with depression? Are you able to express it through a way that empowers you and connects you with others.?

Dealing with depression is rough and so very complicated. You are not “less then” because of it. I  hope you grasp that fact.

Keep being brave.

Keep

Mine vs. My Husband’s

9 Sep IMG_0311

I have the honor of having one of my poems be part of an exhibition, presented by the local chapter of the National Alliance of Mental Illness. (NAMI is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.)

Take a look at the wedding picture of my husband and me.  People may assume that because I am in a wheelchair,  I have more struggles in life than Jayson. They may be surprised.image

People seem to have a small inkling of the obstacles that come with having physical disabilities. However, I don’t think people have the remotest understanding of the struggles of living with mental illnesses. This was my case. Jayson and I were friends for years before we dated and married, but I now realize I had no clue about mental illness, beyond depression (and that is because I deal with clinical depression myself.)

Read this, and I bet perspectives may change a bit.

A Heavier Cross Than Mine

My cerebral palsy
His mental illness
Our union: an eye opener

My inability to walk
My damaged sight
My muttered speech
My limited hands
A five year old can tie her shoes.
I can’t even put them on!

Low expectations from Society
Physical barriers of isolation
Strangers’ sea of pity overflowing
“Aww, that poor woman!”

His distorted perceptions of his allies
His depression, anger, and anxiety
Suffocating. Overpowering.
Hospital stays clutter his resume.

Unrealistic expectations from Society
Family. Friends. Even me, his wife.
“It’s just mind over matter!
“Just try harder!”
“You just need a good woman to guide.”

Battling barriers within and without
A tornado during wintertime. Exhausting for this brave knight of mine.

Medication. Blessing. Helps navigate the tides and waves.
The side effects. Not so much. Enlarging and weighing down his body.

I tell you the God’s honest truth
I take my cross over his anytime
My external cage vs my love’s internal cage of schizoaffective disorder

Unmasking Time

What about you? Are you dealing with something that others just don’t “get” or remotely understand?  It’s hard, isn’t it? That is why you need to find others in similar situations. I adore my friends and family members. However,, I feel a special  closeness to my friends with physical disabilities. We don’t need to convince one another that the struggle is real because we all live the struggle in some way or another.

Sigh… it is just so nice to know I am not not alone.

Keep being brave.

Going Blind in My Right Eye 

31 Aug img_0022

It has been a little more than a year since I lost sight in my right eye. How did this happened? No one fully understands. I woke up at 1am on Monday morning, July 20’th, 2015 with my eye puffy, extremely blurry, and painful. I have always been legally blind (which may or not be related to my primary disability of cerebral palsy.) Therefore, going blind has long been a fear of mine. I don’t play around with my eyes, so I immediately went to the ER.

At the ER, the doctor looked into my eye. My husband Jayson and I explained my symptoms when I woke up. We told him about my eye issues since childhood. For reasons not exactly clear, I have always been legally blind. I had corneal scarring which would flare up and cause blurriness and pain. I would have to use steroid drops until my corneas “quiet down.” I told him that I have not had this attack in 15 years, and this experience was different in its severity.

I also told the ER doctor that I have had pain in the back of the ride side of my head and neck for over a week. The doctor placed pressure on my sinuses with his fingers to check for a sinus infection, and sure enough, I broke down into tears. The pain was so intense.

I thought this meant the sinus infection must have spread to my eye. It made sense to me, given the proximity of the eye to the sinus. However, the doctor assured us that it couldn’t happen like that. The doctor said it appeared that I had an abrasion of some kind, but abrasions were relatively common. He gave me ointment with instructions to use it, I think, for 3 times per day for seven days.

Jayson and I were back at home by 6am. We were relieved that it wasn’t anything serious. We applied the ointment all day, by my eye seemed to have been getting worse. By the night, my eye was even more painful. Jayson was super concerned, but I wasn’t about to go back to the ER. So, my husband called an urgent care center to seek advise. The center was closed, but the on call doctor called us back. That doctor told us to not to worry. I haven’t been on the ointment not even 24 hours yet. I needed to give it more time. Once again, we felt relieved.

Then the unthinkable had happened. By 7am the next morning, I couldn’t see out of my right eye. I jumped out of bed and crawled to the mirror. Remember, I don’t walk due to cerebral palsy.) I had thought that my eye must have been swollen shut. To my horror, my eye was extremely puffy, but it was opened. I just couldn’t see out of it. Once again, I had no time to feel, just to act. I had my in home health care attendant dress me. At 8am, we called my eye specialist. After we explained, the doctor told us to get to the eye center as soon as possible. After looking at my eye for a few moments, my doctor ordered me back to the ER to have a CAT scan done. He didn’t know what was going on, but it was not good.

Jayson took me immediately the ER. My eye continued to increase in swelling and pain. Unfortunately, the ER was extremely busy that day due to three separate car accidents. It took 8 hours to get a CAT scan, and five of those were spent in the waiting room. During this time, I could barely communicate due to the pain. (Some people get loud as they approach their pain tolerance levels, I tend to withdraw into myself.) I kept drifting off to sleep.

When I finally received the scan, which took 10 minutes. The doctors at the local hospital realized they couldn’t help me because they had no idea what was going on. I couldn’t see, and it was being to bulge out of my head.

They sent me to Indianapolis, about an hour away, at 10pm that night by ambulance. This hospital had a speciality in eye trauma. They immediately gave me morphine, antibiotics, and fluids. (They changed my pain medications after awhile because the morphine was not doing a thing for my pain.)

I ended up being, in the hospital for ten days. My medical team consisted of an general medical doctor, an infectious disease doctor, and eye specialists. For the first four days, they thought I had an infection that was attacking my eye. So, they placed me on round the clock antibiotics. My eye, however, didn’t improved, and by this time, my eye didn’t look human. (I would post a photo, but I want to be sensitive to people’s different tolerance levels for disturbing images.) Finally, the eye specialist, who had disagreed with the infectious doctor all along, made an incision in my eye to prove that there wasn’t any infection. He was correct because there was not a hit of puss. My eye just became inflammatory for unknown reasons, which is known as idiopathic orbital inflammatory disease. The doctor said this usually occurs as an one time incidents for women in their 40’s. (I was just days away from my fortieth birthday.) They began giving me high doses of steroids, along with the same round the clock antibiotics and fluids. The steroids did the trick. In less than a week, the eye went back in my head, and I had no more pain. So, on day 10, I was released from the hospital. At that time, I only had a small amount of vision, but the doctors thought it would get better over the treatment of the steroids. Besides, there was probably some fluid in back of the eye that needed time to drain.

I wasn’t too worried about my vision. I had lots of trouble with my eyes when I was younger, and they always got better. In fact, God immediately healed my extreme blurriness after I got a discouraging report from my eye doctor when I was 22. Of course, I knew this was an entirely different eye issue. However, I felt confident that my eye would either get better or God would heal me. It would be all good.

Only, it hasn’t been all good. I never gained my vision back in my right eye. In fact, I even lost the vision that I came home with. The doctors theorize that the optic nerve had been deprived from oxygen too long from the pressure of the extreme swelling I had before the correct treatment was found. The nerve had died, and there wasn’t anything medically to be done. My heart crushed, realizing my vision would have been saved if I had been given steroids sooner.

Now, people may assume that physically adjusting to life with one eye would have been my biggest struggle of this past year. Surprisingly, it hasn’t been. I think this is because I was already legally blind in both eyes. I never had that much depth perception because I also had a severe lazy eye. I never had the ability to drive, read signs at stores, make out facial expressions from a distance, or see little furry creatures scurry across yards. So, physically adapting to the lost of my field of vision had been relatively smooth. I just had to learn to scan with my left eye more widely and be even more aware of my surroundings.

The emotionally dealing with going blind in my right eye has been a hundred times times rougher. It pains me when I enter a room, call out to a friend, only to realize he is standing right next to me. It is a slap in the face reminding me what I have lost. Sometimes I feel afraid of going totally blind, and that isn’t an irrational fear. Remember, we don’t know what exactly happened to my right eye. (We even test to check if I had any type of an autoimmune disease that had attacked the eye, and that wasn’t it.) The same thing could happen to my left eye. I could be totally blind ON TOP of my cerebral palsy!

The very thought terrifies me. I have blind friends who live full lives, and I have friends with severe physical disabilities who live full lives. However, I do not know how I could deal with both total blindness and cerebral palsy. I wouldn’t be able to drive my power wheelchair any longer. I wouldn’t be able to use a white cane because I am unable to maneuver a manual wheelchair. I don’t see how I would be able to do my transfers independently. Would my beloved husband be able to deal with an increased dependency on him? (Jayson said he would, but I know that even the best marriages don’t always survive these things.) Would I have enough attendant care for me to remain at home with Jayson, or would I have to go to a nursing home? (When the government makes it cuts, services for people with disabilities are usually on the top of the list.) No matter how I slice and dice it, my independence would be gone.

And what about using technology? I can’t use speech recognition yet because it is not currently advanced enough to understand my speech impediment. (I find this ironic, by the way, since I can carry on conversations with some 8 year olds.) The thought of not being able to use technology to communicate and express myself is, well, unthinkable.
The few seconds after waking up in those first several months torn at my heart the most. I had never realized this in the past, but there is a millisecond when we are waking that our eyes are still closed. I panicked within myself for that millisecond every morning. “Oh God! I can’t see!” Then after that tiny drop of time passed, my left eye would open, and I would see. Great waves of gratitude and relief washed over me. Then, a few seconds later, great shadows of disappointment and sadness fell on me. In my dreams, I was seeing with both eyes. I would have to acknowledge that Jesus hadn’t healed me after all.

Speaking of Jesus, losing my sight in my right eye has really caused me to wrestle with God Almighty. Jesus has been the one person who has already been with me, even when I did not know Him. He was the One who taught me about love. The One who was with me in the darkest of moments. The One who called me one of His. Jesus protected me from destroying myself. He has answered prayers, and given me physical and emotional healing so many times in the past. He spoke to me constantly to my soul during the ten days I spent in that hospital, reassuring me that He was with me. So, I just believed assumedmy eye would be healed.

However, God hasn’t healed me yet. And I don’t know why. Since I like to think I have control over God and life, I would like to chopped it all up to the fact that I just didn’t have enough faith. However, I cannot say that I didn’t have enough faith. I did and when I grew doubtful, I had others pray. In fact, hundreds of people have been praying for my sight to be restored. Whenever, I had the opportunity to have spirit leaders to pray, I was there.

No, it hasn’t been a lack of faith that Jesus has not healed me. So if not that, then what? After months of wrestling with God that involved weeping, yelling, pushing in, pulling away, searching the scriptures, calming down, getting riled up again, periods of silence, and periods of hearing, I still have no clue. However, I think I am learning to trust Jesus in deeper ways. Do I follow Him even when I don’t get what I want? Do I acknowledge that God is God, and I am not? Can I accept that God is the one who governs me, and I am not the one who governs God?

I think these are the kinds of questions we are to ask if we truly face our suffering and confusion. These questions can’t be easily answered, not by a long shot. They force us to take off our masks, lay down our formulated answers, and get to business of forging a deeper relationship with God Almighty, the One who suffered for our sins so that we could do such outlandish things.

In this hour, I can say that I have no expectations of God. I acknowledge He is not a genie or a Santa Claus. I can’t manipulate the outcome of my life simply by quoting the correct sets of Bible verses. He has the right to do what He wants with me. He can heal me or not. I don’t want to place limits on my Savior any more. Letting go of control terrifies me. It is so unnatural. However, it liberates me even more. If I understand that Jesus has the right not to heal me, then I must acknowledge He has the right to heal my eye or anything else of mine. It really isn’t any of my business. I am to follow.

As you can see, losing my sight has caused the last year to be very interesting, and I have so appreciated the family members and friends who had allowed me to struggle with this journey instead of trying to “make it all better.” I am equally grateful to my church, Urban Light Community Church, for the same reasons.

Instead of putting up good fronts, I think we should wrestle with the tough questions in our life. It is scary, and it does suck majorly when we do this. I think, in the end though, we have more honest relationships- both with God and the ones who we love. What more could we want then that?

Keep being brave.

Differences Matter

27 Jul img_0548-1

I don’t find the term “all lives matter” very helpful. To me, it is society’s way of saying, “Grow up. We all have issues. Stop complaining.” This is why I think people in the “black lives matter” and the “blue lives matter” campaigns are super brave. Both groups are just drawing attention to the unique challenges they face from being members of their groups. I aspire to that kind of courage because I know it isn’t easy.

 Black people are not saying that they are the only people who face injustice and struggles. They are just trying to give voice to the unique ways in which these things play out for their particular group. Black people have struggles. White people have struggles. Asians have struggle. Latinos have struggles. Native Americans have struggles. All races and ethnicities have struggles and face forms of injustice. However, each group experience them differently. There are a disproportionately number of black people in our criminal system compared to any racial group in America. When the population is taken in consideration, black people are twice as likely to be shot by law enforcement. With these facts, it is no wonder this community struggles with alienation. Anger, fear, and hopelessness are natural results of this state. 

The same is true for police officers. They are not saying that their profession is the only profession in which they face mounting frustrations, public misunderstandings, and job limitations. Teachers have the similar issues. The military has similar issues. Health care workers have similar issues. Truck drivers have similar issues. Government employees have similar issues. Even CEOs have these issues. We have these issues in all professions, but they do play out differently for each workforce sector.

The “blue lives matter” campaign is just bringing up the particular ways that these issues are played out for their group. The fact that police officers risk their lives on a regular basis is a reality that effects this group in all kinds of way. The fact that people are being shot for just being police officers is why this group is feeling so much anger and fear.

We don’t like talking about differences because they make us uncomfortable. We are uncomfortable because we think the focus of such talk is about blaming. However, for many, the true purpose of such discussions is to bring about connection and possible solutions.

How do I know all of this? Simple. I have a disability, and discussing disability issues with people outside of this community is really, really hard.

When I talk about inaccessibility, transportation issues, integration, healthcare choices, and stereotypes, I am not saying the disability community is the ONLY community who face these struggles. What I am saying is that how we experience these things is different than other communities. We are isolated because we literally can’t get from point A to point B due to a lack of accessible sidewalks and transportation. Most homes are not accessible which means we are disconnected from family and friends. We are twice as likely to be in poverty, and 4 times as likely to be victimized. These issues are real, and when they are not acknowledged, many of us do feel angry, frustrated, and hopeless. 

When people say that all Americans face challenges, I feel like the struggles of my community are not seen as important or damaging. In fact, it sends the message that the actual people in my community are not as important.

I can only assume that this is how other groups feel. Can we just stop the denial and just acknowledge that we all face injustice but not in the same way? This would lead to greater connection, which could lead to finding better solutions.

I applaud the people who dare to talk about any type of communal injustice and frustration because it is messy and emotional. It is my prayer that I communicate better what my community experiences. I tend to hold back a lot because I don’t like to create too much uncomfortableness. However, I must ask myself, “What’s so wrong with creating uncomfortableness?” I mean, God is constantly asking us to do the uncomfortable.

Sigh, being human is so complex…

Keep being brave.

Finding My Voice Again

9 Jul

cropped-image9.jpegWell, i am writing my first post on this website. I wish I felt more proud of myself, but I don’t.

I believe I should have done this long, long ago. I know there has been understandable reasons for this, and it has not been because I was lazy (although the evil one loves to shove this lie into my face.) I know that the mercies of the Lord are new every morning. Still, I feel shame for silencing my voice for so long. I am 40 years old, and I stopped writing for 5 years. How could I been so stagnant when life is so short? (my honest criticism)

In light of how I emotionally beat myself up, the fact that I am actually doing this post and is nothing short of a testimony of the power of living in grace. Grace gives us the ability to face the truth about ourselves and the opportunity for God to shine His love in us.

I am smiling right now because I see the power of grace working this very moment. I am sharing my struggle of beating myself up so badly that it keeps me from writing. And now that it is brought into the light, I can feel God speaking truth to my injured soul. Indeed, His mercies of the Lord are new every morning.

There is no need to condemn myself because His mercies are new every morning. I will say it again, “His mercies are new every morning!”
Do you see what just happened? I knew the bible verse, but I needed to face the truth about myself before God could reach me with the sweetness of that bible verse. That is the power of living in grace. That is freaking amazing!

Since I am currently in a moment of freedom, let me rejoice, After 5 years of holding back,  I started this blog. I feel proud about that. It shows how far I have come. God is indeed good. (I really hope my friends will remind me of these things the next time I slipped back into my comfort zone of criticizing myself. Maybe they should have a copy of this post on hand.)

I  like being brave.

Please read the “Home” page to learn more of my struggle in finding my voice again, about my disability, and the purpose of this blog

Unmasking Time:

so, what about you? Are you holding back from doing something you love? What do you need to go for it?

For me, I had to overcome my fear of criticism. It was not easy for me, and it will probably not be easy for you to overcome your fear  either. The freedom that you will experience, however, will be so worth it.

Keep being brave.

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