“Not an Animal!!…..a Human Being!!”

I recently watched The Elephant Man for the first time. For those of you who don’t know, The Elephant Man is a movie based on the life of Joseph Merrick (mistakenly referred to as John Merrick). Joseph Merrick had elephantiasis, which was possibly caused by a genetic disorder called Proteus syndrome.

elephant-man-2According to Wikipedia, “Elephantiasis is a symptom of a variety of diseases, where parts of a person’s body swell to massive proportions.” This caused Merrick to have deformities over most of his body.

I think the synopsis of the movie given by imdb.com is more than a little degrading to the person of Joseph Merrick.

“A Victorian surgeon rescues a heavily disfigured man who is mistreated while scraping a living as a side-show freak. Behind his monstrous facade, there is revealed a person of intelligence and sensitivity.”

The movie came out in 1980 but takes place at the end of the 19th century. A time period when the disabled were shut away and not part of society. So the description does show that perspective.

I think the movie was done very well even though it was slightly romanticized. Watching the movie you would think he never got angry at the way people treated him. He was in a “freak show”  so people gawked and pointed.

In the movie he was still ridiculed and put on display by the security guards keeping the hospital secure. He was put on display in the name of science by the doctor who was supposed to be helping him. He had “visitors” come see him. Most of them either came out of curiosity or just so they could tell their high society friends how nice they were for visiting “the poor man.” That was how things were at the time.

Society has changed and things are better for a lot of disabled people. But some people still think we need to be rescued. That can come in the form of thinking we need cheered up, that we need perfect strangers to pray for our healing, and believe it or not some people still think we are disabled for some sin. Some are like the high society people and see us as a mission project.

Guess what, a lot of us have pretty happy lives. But at the same time we do have bad days just like anyone else. Our disability is not a curse from God. Most of us are just the way we are supposed to be, not broken. Don’t get me wrong, I am a firm believer in the power of prayer but sometimes a miraculous healing isn’t God’s will.

For some of us it can be a little degrading when people, especially perfect strangers, constantly pray over us for a completely miraculous healing. I have had people pray that for me and been completely fine with it. When other people do it I feel like they see me as broken or abnormal.

theelephantmanposterI realize people don’t intend to make someone feel that way but it happens. I don’t really know what advice to give people on this except to remember that the person is a whole person. The disability is only a small part.

As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.

The movie did a very good job of showing Joseph Merrick the man. At times he was shown a little one dimensional but as the movie progresses we see him as more of a multidimensional person.

visitorIt’s interesting that some of the people did really want to help him and get to know him, but he ended up changing them and helping them to see their own humanity.

The doctor who “rescued” him started to question whether or not he was any better than the people using Merrick for the freak show. The doctor gained notoriety because of Merrick. This happened as he began to see him as a person and not a diagnosis.

The nurses at the hospital didn’t want to be assigned to him. When he first arrived one of the nurses was told to give him fresh linens but not told about his condition. She sees Merrick and screams, running out of the room. How would you like to have that reaction from people looking at you? You have to remember that no one had ever seen someone with such extreme deformity. Eventually they started to like him as a person. The nurse in charge even confronted the doctor when she felt that Merrick was being exploited by him.

tony-perkinsHe was able to touch and inspire others. What are you doing to touch and inspire others?

Every single one of us has the ability to touch and/or inspire others. Sometimes it is sharing our story, it can be with one person or a whole crowd of people. Sometimes it is just a matter of taking the time to listen to someone. Get to know someone else. Let others get to know you. Each and every one of us has something to offer others.

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What I Learned Being Stuck In Bed

I wrote last week about my cable being out due to a mistake of one of comcast’s service technician. I was basically writing out of sheer frustration. I was angry.

anger9I try to put things in a positive light but like most of us I don’t always succeed. But, I think it is good to be real sometimes. A few people actually liked the post. I thought to myself “you actually like that?” I guess people must like reality.

I know I enjoy reading blogs when people are genuine with their imperfections. There is a fine line between being genuine and whining though.

Little did I know at the time my cable went out, that I would be stuck in bed for two days at the end of the week. Let’s just say I had stomach issues. Thankfully the Internet was up and running by the time I was stuck in bed.

The biggest problem with staying in bed is that I can’t use my computer. I don’t have the setup for that. Too expensive to buy for rare occasions. I do have my Kindle which let’s me watch Netflix and YouTube videos. So I spent two days alternating between watching my Kindle and listening to audio books.

I always have my iPod loaded with podcasts and my external hard drive loaded with movies. Unfortunately, I didn’t take advantage of what I had at my disposal. I didn’t listen to one the-brain-eaterspodcast sermon, I usually listen to one in the morning and one before bed. I didn’t listen to one of the five audio bibles I have, I usually do at least a little bible reading most days.

What did I do? I just watched garbage and didn’t do anything uplifting. Don’t get me wrong, there was nothing wrong with the shows but if that’s all you do it rots your brain.

Just zoning out and watching TV all day is not good for me as an addict. Being bored isn’t good. It gives my brain too many opportunities to go where it shouldn’t, where I don’t want it to go.

So, what did I learn from being without cable followed by being stuck in bed?

1. To appreciate technology, especially my computer and my eye gaze equipment. Being without that was strange. I use it so much to talk with friends online and to send text messages.

the-importance-of-appreciating-the-people-in-our-life-e13493660274322. To appreciate my friends more. At least two people left me voice messages to see how I was doing or just to say hello. I can learn a lot from them. I care but aren’t very good at always doing the same. I’m working on it and improving.

3. Appreciation for the fact that I have nurses to help me. They had to be my hands and feet more than usual. I may complain about them some sometimes but I do appreciate them. People can get on each other’s nerves, it’s bound to happen.

4. The importance of staying close to God and renewing my mind. I know I would have handled being stuck in bed much better if I had. I felt like crap. Doing something uplifting may not have taken away my physical pain but it would have shifted my focus on to God and put things into perspective.

Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will. – Romans 12:12

Luckily I don’t have many times where I am stuck in bed. The next time I am, I need to make sure I do more than stare at my tablet all day. I need to make it a priority to keep my eyes on God, just like I need to do every day. It’s actually more important when feeling sick.

Just venting folks! Having a bad day!

The Internet was fine all afternoon until about 4 o’clock when it suddenly stops. We then notice a guy from the cable company doing some work outside.

Thanks for the warning.

At this point, I have no Internet or cable TV service.

the-cable-guy-tbiWe figure, no big deal, it’ll be back when they’re done. Meanwhile, I was getting ready to leave for Celebrate Recovery at the church. So on our way out my mother goes over to the guy to make sure he was aware that our cable and Internet is out. He said he was. When asked if he was going to have it reconnected when he was done, he said yes. We get home, the guy is gone, and still no cable or Internet.

I asked a friend to call them for me Wednesday. So we go to find the account number and realize it’s on my dad’s computer. The problem is we don’t know the password. We couldn’t ask him, he’s in Bolivia on a Mission Trip. My nurse was able to let me use his Hotspot until he had to go home. So I write my dad an email, he has very occasional Internet access, asking him his login information.

Do you see the problem with this plan? The problem I didn’t see until about 3 am. How am I going to know if he answers my email if I don’t have Internet access?

Luckily, after about two hours of begging and pleading on the phone with the cable company, my friend was able to get someone to listen and help us. So someone called me to set up a service appointment. At least all I had to do is give permission for someone to speak on my behalf.

anger9So hopefully I will be up and running by the end of the day Thursday. (Editor’s note: The cable was on by 3pm Thursday.)

What ever happened to courtesy from companies? Oh yeah, corporate monopolies. Fewer choices. Corporations seem to think they can do what they want. Oh wait, our politicians have given them the power to do whatever they want. I apologize to anyone who owns or works for a corporation with scruples. Notice I’m publishing this after my Internet gets turned back on. 😉

With me stuck in one place in this chair, the internet is my only window to the world.

If it wasn’t for the help of a good friend and my nurses, I would have been without Internet service until after my dad came home. Who wants to deal with that after a twelve-hour trip?

If it wasn’t for the Internet I would be very isolated. I have friends from all over the world I talk to and play games with. Anything from chess to dungeons and dragons. Yes, I’m a nerd and a kid at heart.

Another interesting thing is how much we all have started to take technology for granted. I was writing an email not even realizing I wouldn’t know if it was answered. That’s how bad it has gotten.

Just venting.

30146138-cartoon-Nuke-explosion-Stock-Vector

More Valuable than Sparrows

I hope this doesn’t come across as self pity or feeling sorry for myself. That is not my intention. But I wanted to share how God kept me from falling into self pity this past Labor Day weekend.

Labor Day sign

First, why I was fighting not to feel sorry for myself. It’s Labor Day weekend, so everyone is out visiting friends and enjoying the sun. Having conversations and generally having a good time.

on the stairsMe? It’s just me and the dogs in the house for the afternoon on Sunday. Going to barbecues, picnics and other outdoor activities can be pretty boring for me. I can’t eat and I can’t talk, so my day is spent listening to everyone else talk and watching them eat. I can’t talk because my computer doesn’t work under bright light, the sun is definitely a bright light.

wheelchair-stairs flipIf it’s a park or family type thing, sometimes watching the kids play can bring some joy. Reminds me of a simpler time when there doesn’t seem to be a care in the world. A time when your whole life is in front of you.

I still go to the occasional outdoor gathering but I’m very selective. If people I know somewhat well will be attending I am more likely to go. I go because I like hearing how they are doing even if I can’t respond. Also, they are more likely to at least try to include me. They either make a point to talk to me directly or even try to ask me questions in a way that might be easy for me to answer i.e. questions that I can answer with minimal talking involved.

Okay, now how God kept me from ruining my day by feeling sorry for myself. I was sitting outside with my dogs so I could get some sun and fresh air. I was feeling a little down, and saw some movement in the tree in front of me. The tree is maybe three feet from me.

sparrow 01I could see the tail feathers of a bird, so I couldn’t see it too well. I couldn’t tell if it was making a nest or just trying to eat the nearby berries. I assumed it was a blue jay because we have a lot of them in the neighborhood. I then noticed another bird a few branches over.

I couldn’t stop looking at them even though I couldn’t see them clearly. Then one of them moved to a slightly closer tree and I was able to see it clearly. It wasn’t a blue jay after all. After looking it up online I’m 90% sure if was some sort of sparrow. I was thrilled and amazed.

We have tons of birds in the neighborhood but usually they are in another yard or flying over. Seeing God’s creatures that close has a calming effect, at least it does on me. This made me think of what Jesus said about our value, using the example of a sparrow.

What is the price of five sparrows—two copper coins? Yet God does not forget a single one of them. 7And the very hairs on your head are all numbered. So don’t be afraid; you are more valuable to God than a whole flock of sparrows. – Luke 12:6-7 NLT

It was as if God was saying that He sees me as more valuable than I could ever imagine. So what if you can’t really participate at outdoor gatherings , you have so so many other chances to communicate and be in community. You have people in your life who make an effort to make sure you are involved because they care about you. So many people don’t even have that, and I just don’t mean disabled people .

Stop feeling sorry for yourself. Any reason you think you have to feel sorry for yourself is just an illusion.

Grace

I have been thinking about grace lately. Not just the Grace God has given me, but also the grace that others have shown me and the grace I need to show others. I want to talk about this in regards to my nurses in particular.

When you have to have someone outside of your family in your house 24/7/365, grace is essential for both parties involved. This is especially true when you depend on the person to do everything for you, including making sure you are breathing.

Maybe I should start by defining what grace is. I am no expert theologian, so this will be very basic.

Grace can be used either as a noun or a verb depending on the context. According to some of Webster’s Revised Unabridged Dictionary’s 17 definitions of grace, it is defined as:

  1. (n.) The exercise of love, kindness, mercy, favor; disposition to benefit or serve another; favor bestowed or privilege conferred.
  2. (n.) The divine favor toward man; the mercy of God, as distinguished from His justice; also, any benefits His mercy imparts; divine love or pardon; a state of acceptance with God; enjoyment of the divine favor.
  3. (n.) The divine favor toward man; the mercy of God, as distinguished from His justice; also, any benefits His mercy imparts; divine love or pardon; a state of acceptance with God; enjoyment of the divine favor.
  4. (v. t.) To dignify or raise by an act of favor; to honor.
  5. (v. t.) To supply with heavenly grace.

I think that before we can show true grace to others we need to appreciate God’s grace towards us. “The divine favor towards man; the mercy of God; a state of acceptance with God”. I realize that the second definition in the previous sentence isn’t technically theologically sound.

grace1

God’s grace is Him giving us what we don’t deserve, while His mercy is Him not giving us what we do deserve. What do I mean by this? According to the Bible we deserve to go to Hell, but because of Jesus’ death on the cross we don’t have to. But at the same time we are made right with God because of that same sacrifice. We have the opportunity to live with Him forever and we have Him to guide us and comfort us through the Holy Spirit.

I don’t know about you, but when I look at all the sinful things I’ve done in my life, I don’t understand why He wants to be with me. He is perfect and holy. I am anything but that.

But God demonstrates his own love for us in this: While we were still sinners, Christ died for us. – Romans 5:8

I need to remind myself of this truth often. For example, when I first started having trouble with my speech, I wasn’t exactly the nicest person. I became very angry and bitter. I would take it out on those around me, especially my nurses. I’m surprised they didn’t all quit, I would have. One did actually. I can’t say I blame her. Sure, it was and is very frustrating to not be understood. But that didn’t give me the right to take it out on others.

DaffyThankfully God is graceful, otherwise, I probably would have been struck by a lightning bolt. I don’t think extra crispy is a good look on me.The nurses that stayed definitely were being graceful and showed me grace. “The exercise of love, kindness, mercy, favor”. Actually, most nurses, if not all have a “disposition to benefit or serve another”.

But love your enemies, do good to them, and lend to them without expecting to get anything back. Then your reward will be great, and you will be children of the Most High, because he is kind to the ungrateful and wicked. Be merciful, just as your Father is merciful. – Luke 6:35-36

nurse-word-cloud-750x300Having said that about nurses, I need to talk about how or why I need to show them grace. Some nurses are nothing like the ones described above. Luckily I don’t get too many of them. The nurses I have aren’t terrible. They are pretty good actually, but they are also human.

My nurses usually stay with me for a long time, which is great. The only thing is that after awhile people get too comfortable. They start to forget that they are in someone else’s house. They get complacent, if not lazy.

Tired-NurseFor example, I had to complain to the nursing agency I use because of nurses sleeping. They are my only means to be able to move if I can’t get or stay comfortable. If there is a problem with my ventilator, I need them to be alert enough to realize it and figure out what the problem is. I don’t see how they think they can go from asleep to alert in one second. Let’s just say it makes me feel a little anxious.

There is a problem when the patient can’t get to sleep because the nurse is snoring so loud. If they were working at a hospital or a nursing home they would be out of a job. In most cases simply saying something resolves the issue. If not, they are replaced. This is just one example, but my point here is not to beat up on my nurses, so I’ll only give the one example.

With stuff like this, I am the one who needs to show grace. This doesn’t mean I have to let someone put me in danger, but I do need to show grace and love when handling situations. We are commanded to do this. When Jesus was asked what the greatest commandment is, He replied :

“The most important one,” answered Jesus, “is this: ‘Hear, O Israel: The Lord our God, the Lord is one. Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength.’ The second is this: ‘Love your neighbor as yourself.’ There is no commandment greater than these.” – Mark 12:29-31

If I was one of my nurses, I would want to be given a second chance. If I want others to give me a second chance then I have to do the same.

Cross

I don’t know if you noticed, but one of the definitions of grace is closely tied to love. So, I will end with this well-known passage about love.

4 Love is patient and kind. Love is not jealous or boastful or proud 5 or rude. It does not demand its own way. It is not irritable, and it keeps no record of being wronged. 6 It does not rejoice about injustice but rejoices whenever the truth wins out. 7 Love never gives up, never loses faith, is always hopeful, and endures through every circumstance. 1 Corinthians 13:4-7