Monthly Archives: May 2014

Why do you feel I need your help?

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I am determined to do [whatever “it” is] I can do independently, even if it looks a little odd or as if I am struggling. When I go shopping alone, sometimes I sense that the store workers are watching me and ready to pounce when I need help. Being watched as though I do not belong or I may break something is an unnerving feeling.

Why you rush to my assistance before I can even try to do [whatever “it” is] myself? Part of the issue is it looks a bit awkward. For instance, I pull my coat over my head when taking it off, like a little kid. It is painful to watch an individual “struggle” to do [whatever “it” is] when most people can do in a second without thinking, like opening a door, which is not automatic. Finally, it is quicker and easier if you help. You are right there, and you can do it in a second. I understand your need to help me. I really do understand, but let me explain why it is not always helpful.

My Need for Space

Due to my Cerebral Palsy, I need more space than the average person. I make large movements whenever I do gross motor skills. I have difficulty doing smaller movements that are smooth and controlled because of spasticity. As a result, if you try to help me mid-movement, you are at risk of getting hit accidentally, because I cannot react quick enough to stop what I am doing. My spasticity causes me to have uncontrollable movements while doing simple tasks. Sometimes people think I have a learning disability and I do not understand the world around me. Unfortunately this is not the case. I just have to think about what I am doing and adjust according to how my muscles are cooperating at the moment.

Cerebral Palsy is caused by brain injury causing disconnect between the brain and the muscles. When I was born, I was not breathing, which caused my brain injury. Cerebral Palsy does not affect my ability to learn or to understand the world around me, though you can have learning disabilities as well. The disconnect between the brain and the muscles is what causes the abnormal movements.

Although it may seem I have no control over my muscles, I do have control over my movements. People always jump to my rescue the first time they see me get out of my wheelchair and crawl on the floor, because I move like drunken sailor. I understand my movements and know how to work with my spasticity. I just require more space than most individuals.

My Need for Time

Because of my wild and uncontrollable movements, I take more time to do every day tasks. I need to be as independent as possible, because you or someone else will not be there to help me the next time I need to do it. The more often I do a task, the quicker and easier the task will become. I know you have time limits set in your head, but I live by different limits. I need a great deal of patience to do every day tasks, but I know I can.

My Need for Patterns

Unlike the average person, I need to do the same activity the same way each time. It is very repetitive, but it works. During the weekly #CPChatNow[ED1]  Twitter conversation, John W Quinn said, “Patterns are the ways to get the task done.” When you jump in to help, you disturb the pattern and my ability to finish the task. Remember the more you do for me, the less I can do for myself. In the Cerebral Palsy world, if you do not use it, you loose it. When I get out of patterns, I loose the ability to do [whatever “it” is].

On the flip side, when I do the same task ten times in a row, the eleventh time I may not be able to do it. Fatigued sets in and stops me from being able to perform the task. This is when I need to ask for help. Also my muscle control varies day to day. Some days I am stiff and tight; other days I am floppy and loose. Therefore, I need to change my patterns accordingly and be patient to do so. Strong emotions and the weather can also affect my ability to perform different tasks. Some days I need more help – plain and simple.2014-03-29 14.31.21

My Need to Process

As a general rule, I have a five to ten seconds reaction time delay. There is nothing I can do, but prepare for different situations, if I can. Most of the time my reaction time delay goes unnoticed, but it does prevent me from doing certain tasks, like driving a car or cooking a meal.

Although it has nothing to do with Cerebral Palsy, sometimes I just need to get my bearings as to where I am going next. One day at an airport, I pulled over and stopped in the hallway (something everyone does) to check what gate I was going to, because it determined which security checkpoint I went through. An airport worker came up to me and started asking who I was with (no one), who dropped me off (my friend), and why did they not get me help (I did not know I needed help). If the airport worker asked me if I needed help, I would have said, “No, I am just looking at my ticket to see what gate I am flying out of, but thank you.” Instead the airport worker made a scene all through security, because it was not her job to take me to my gate (I did not ask you to…). These kinds of situations frustrate me, because I am made to feel helpless when I am perfectly able. Please ask before assuming I need help.

So what can you do while you wait for me?

There is a lot you can do while watching me complete a task. It does require a lot of patience and control on your part.

  • Be patient: Allow me the time and energy to perform the task.
  • Respect my space: Stay out of personal space while I am doing the task. Reaching in to help can interrupt my patterns and hinder my ability to complete the task, although sometimes a gentle hand on my back, especially when I am standing and transferring, can calm and steady my muscles.
  • Observe and learn my muscle movements, patterns, space needed, and time allotted. You can learn a lot by observing what I can do, so you can notice when I am fighting fatigue or struggling and need help.
  • Respect what I can do. Work with my abilities, not against my dis-abilities. I can do more than not. Allow me the space, time, patterns, and ability to process before jumping in.
  • Offer help before helping. Once you observe and learn my patterns and see I am fighting fatigue or struggling, offer help and give me time to react to your offer. Sometimes I am too stubborn to ask for help.

I do believe individuals without disabilities and individuals with disabilities can live in harmony with one another. Each party needs to take the time to learn the other parties’ abilities. Just because I have a disability does not mean I have no abilities, it just means I need extra space and time. I am the one who needs to ask for help when I need it.

[ED1]#CPChatNow is a Twitter conversation every Wednesday at 8pm EST. All are welcomed.

 


 

This blog post first appeared on EMDeerx Muse. A decision has been made to combine the two websites.

Sixth Sunday of Easter: Challenging your Idols

Reading

Acts 17:22-31

Devotion

Peace be with you!

If you are anything like me, you have certain sentimental things that you keep because they hold memories of the past. I have Lolly, the doll the hospital gave me when I was born. I have a cross with a girl praying that has hung above my light switch ever since I can remember, even with all of the moving I have done throughout my life. I have the cross my church gave me for confirmation. I have the wooden bunny Nathan gave me on our first date twenty-some years ago. I have the post card my mom sent me my first week of college twelve years ago. I have several cards mentors, family members, and friends have sent me over the years. Each of these items holds a special place in my heart. These items remind me of the individuals who have supported me throughout my lifetime. Even though treasured items can sometimes be blessings, at times they can become idols in our lives. Even religious items can come to be such idols. We see this to be true in our reading for today.

Paul makes an appeal to the Athenians to look around and examine their relationship with God the Father. The Athenians are highly educated group of people who know the Old Testament and the story of Jesus Christ. The Athenians are artists by trade who have created masterpieces telling the Biblical stories and representing “an unknown god.” Paul commends the Athenians for being religious, yet he questions their intentions. Are the Athenians worshipping the one true God? Or are they worshipping other gods? Why do they need a whole city filled with masterpieces of their religious faith?

Paul points to the shrines that the Athenians have built with their human hands. Paul reminds the Athenians God is Lord of heaven and earth and is not limited to the shrines (Acts 17:24) and does not need to be served by human hands (Acts 17:25). God is the one who made our ancestors’ and our existence possible (Acts 17:26). God controls our movements, our speech, and our existence; he controls time and places. The inscription to “an unknown god” does not honor the God Paul knows and loves. God is known to us in all we do and in the actions of others. Our God is a known God.

Therefore, Paul calls the Athenians to repent for worshipping their idols over the one true God. The Athenians need to repent to God. They need to bring him their brokenness; only in this way can they come to be in a relationship with the God who sent his Son into the world to rise from the dead (Acts 17:31). We are called into a relationship with God who surpasses any limits we set for him. He is a God who knows no boundaries.

Thanks be to God!

Dear Heavenly Father, Thank you for creating the time, the boundaries, the lives of individuals, and the space for us to live in the world. Create in us a clean heart. Remind us to honor the boundaries you set for our existence. Thank you for surpassing our limits. Amen.

Reflective Questions

Please answer the following reflective questions in the comments below. Please agree to disagree and be respectful to each other. (If you have not already done so, please also take a moment, to sign the behavior covenant by commenting on it.)  You can answer as many questions as you would like.

  1. What sentimental objects do you hold onto? How do these objects limit God’s presence in the world?
  2. How do you worship the one true God?

Fighting the Guilt Complex

ErinCerebral Palsy often times gives a person a guilt complex for needing help to do the things she wants and needs to do. The guilt complex can drive a person into depression and make her withdraw from her family and friends. It takes a strong network of family and friends to get a person from being trapped by the guilt complex.

For most of my life and still do sometimes, I have felt like a burden to my family and friends. Sometimes Cerebral Palsy feels like a hindrance, because it keeps me from doing what I want and need to do: feed my pups and myself, clean my house, drive myself to where I want and need to do, and [whatever “it” is] that I need to do.

As older I get, the less I feel like a burden and Cerebral Palsy is less of a hindrance. True, I still have to fight off the paralyzing feeling of being helpless when I am alone and need to do something ridiculously simple, like opening a pill bottle or filling my water bottle. I have learned to adapt and leave things for my personal caregivers to do during their shifts. There is no sense to become frustrated trying to do something my muscles refuse to do. It may even be something I can do, but for whatever reason I cannot do it in that moment.

I have learned a few ways and reasons to ward off the guilt complex:

  1.      I am me for a beautiful reason. God created me out of his perfect image and put me here to carry out his plan. Until God calls me home, I will continue to do his work.
  2.      I have a unique perspective on life to share with the world. No one else thinks the way I do; I have a unique voice. My thoughts, ideas, and opinion should and need to be heard, plus others really do listen.
  3.      I am able and do far more than most adults. I do some amazing activities: cycle some 20 miles, workout, downhill skiing, paint, read, swim, fight for social justice, write, party, travel way too much, and more. I do just as much, if not more, as any other adult.
  4.      I am counted and loved. I am an individual who is a mother to three pups, homeowner, daughter, aunt, niece, sister, social event planner, significant other, bestie, mentee and mentor, advocate, speaker, life-long learner, teacher, published author, and Christian. The list could go on, but you get my point: I am an individual who should be and is counted and respected. People love me for me.
  5.      I am more than my Cerebral Palsy. Yes, Cerebral Palsy defines what I can and cannot do the “normal” way at any given moment, but I have learned adapt and prepare. What do I mean? My personal caregivers are in the habit of making sure my water bottle and daily pill bottles are filled before they leave. I have giant soap pumps in my shower, so I can bath independently. I pay bills online. I wear sport bras, elastic pants and skirts, stretchy (not big) shirts, and dresses. I can do a lot more once I adapt the activities.
  6.      Above all else, I ask for help when I need it. It is important advocate my needs and desirers to others, because they do not know until I speak up. Dwelling on what I am not able to do does not solve the problem, but when I speak up others can help me and/or find a way to adapt it so I can do it. I truly have an amazing support system of family, friends, and colleagues.

I admit fighting against the guilt complex is no easy task and is a constant battle. However, it is a battle worth fighting, because I am an able individual with dreams and self-worth. And so are you.


Blog post first appeared on EMDeerx Muse. A decision has been made to combine the two websites.

Photo Credit: Amber Sue Photography, www.ambersuephotography.com

Fifth Sunday of Easter: Martyrs – Then and Now

Reading

Acts 7:55-60

Devotion

Peace be with you!

The devil challenges our relationship with God the Father, God the Son, and God the Holy Spirit through brutal acts of injustice. Watching a loved one suffer from cancer, especially when it is terminal, is difficult beyond any imagination. God did not create us to make us suffer – that is the work of the devil. This week a five year-old identical twin, Ben, died after suffering for four months from Stage IV glioblastoma, a brain cancer. His mother, Mindy, blogged throughout the journey and kept her focus on God’s will. The blog entry about the night Ben entered heaven reflected all of the emotions Mindy and her husband are going through – the sadness of never seeing their son on earth again, the joy of knowing Ben is in heaven and no longer in pain, and the anxiety of having to tell his identical twin, Jack. Fortunately Jack noticed Ben was missing and took comfort in knowing Ben, his twin and first friend, was in heaven with Jesus. Mindy writes,

You see, heaven makes all the difference. Because God conquered death, He paved the way for us to be with Him forever. In eternity. Because we serve a Living God who loves us even more than we can imagine, we can have confidence in His ability to care for our loved ones after they take their last breath. Because of heaven, I know that I will be reunited with my Benjamin again someday. And so will Jack. And the rest of us that love Jesus.

Mindy’s words are a true testament of faith as she leans on God the Father for comfort. Ben is in a better place – free of pain.

The devil has been working against God the Father since before creation. When Jesus walked on earth, the devil tempted him for forty days in the wilderness. After Jesus conquered death and ascended into heaven, two groups emerged – the Jewish authorities who rejected Jesus as the Messiah and the apostles who witnessed and experienced Jesus’ ascension after he gave them the Holy Spirit. Stephen is one of the seven men chosen by the twelve disciples to share the good news with other communities (Acts 6:1-6).

Before our reading, Stephen had just finished delivering a sermon to the Jewish authorities who rejected Jesus as the Messiah. Stephen outlined the Jewish heritage to show how the Israelites have a long history of rejecting God’s prophets and leaders. The Israelites believed they were better off in Egypt than in the wilderness – even though in the wilderness, they were with the Lord and headed to the Promise Land. The Israelites rejected the Ten Commandments Moses delivered from God and made their own idols. The Israelites have killed other prophets in the past for speaking God’s message and judgments. The Jews rejected Jesus’ good news and killed him for speaking blasphemy, and therefore they reject Jesus as the Messiah. Stephen challenged the Jewish authorities about where God is really presence. The Jewish authorities believed God lived within the walls of the temple, but Stephen stated that God is present everywhere — including when the Israelites were in the wilderness for forty years. God is not confined to a building but is readily available to everyone everywhere.

In our reading today, we see that the Jewish authorities do not like what Stephen is saying. They believe Stephen is speaking blasphemy against God the Father. The good news of Jesus Christ breaks down everything the Jewish authorities believe is true. Their foundation would be broken down if they accepted the good news. Not only that, but the good news challenges their political views and how they would influence the local politics.

The Jewish authorities just cannot let Stephen go on spreading this “blasphemy,” so they take the necessary actions to stop him: they stone him to death. The brutal act makes us squirm in our seats; after all, Jesus warned us this would happen. Stephen is the first of many martyrs. There are still martyrs today who are killed for believing in the good news of Jesus Christ. For instance, just this week news broke about Meriam Yahya Ibrahim Ishag, a young pregnant mother who was sentenced to death by a Islamic judge for converting to Christianity and marrying a Christian husband. The brutal acts against Christians do not end with the Bible but continue into the present.

Stephen is not afraid to die. He looks towards heaven and sees Jesus standing ready to lift him up (Acts 7:56).

Whether our lives end in martyrdom, are cut short by a devastating illness, or last until old age, one thing is certain: we all die. Stephen understands this life on earth is temporary and not the end. Jesus promises death is not the end, but life continues in heaven with the promise of eternal life from God the Father, God the Son, and God the Holy Spirit.

As the Jewish authorities stone him to death, Stephen echoes Jesus’ dying words by saying, “Lord Jesus, receive my spirit” (Acts 7:59 NRSV). Stephen puts his life in God’s hands, because he knows he is going to join God in heaven. Before he dies, Stephen also prays for Jewish authorities, “Lord, do not hold this sin against them” (Acts 7:60 NRSV). Stephen understands this is an act of the devil, and his reward is waiting in heaven.

Like Stephen, Ben, the five year-old identical twin, falls victim to the devil’s curse of death and dies fighting for the good news. Like Stephen, Meriam Yahya Ibrahim Ishag is being killed for standing up for her faith. Like Stephen, we threaten the traditions of the authorities and face being caught between the devil and God. Like Stephen, we stand with God – Father, Son, and Holy Spirit and will not give in to the devil’s demands. Like Stephen, we hold on to the promise of eternal life in heaven with the Triune God –Father, Son, and Holy Spirit.

Thanks be to God!

Dear Heavenly Father, Thank you for giving us the hope of eternal life, no matter how our time on earth ends. Help those who are experiencing suffering for their faith and especially provide strength and hope to our sister Meriam Ibrahim. Be also with Mindy Sauer and Ben’s whole family and comfort all who mourn. Thank you for the rich promises you give us because of Jesus. Amen.

Reflective Questions

Please answer the following reflective questions in the comments below. Please agree to disagree and be respectful to each other. (If you have not already done so, please also take a moment, to sign the behavior covenant by commenting on it.) You can answer as many questions as you would like.

  1. What encounters with death have you had that made you struggle with faith?
  2. In what way do Jesus’ death and resurrection provide you with comfort in those situations?
  3. Write a letter on Meriam Ibrahim’s behalf to repeal the Islamic ruling to have her hung for her religious convictions. Information as to where to send the letters can be found here.

Fourth Sunday of Easter: Living in Community

Reading

Acts 2:42-47

Devotion

Peace be with you!

The early apostles devoted themselves to building a strong community centered on Jesus Christ, the Messiah. The apostles lived as Jesus had taught them – a simple life. They sold their possessions and shared the proceeds with those in need (Acts 2:45). The apostles took care of those who needed extra tender love and care.

I wonder what God thinks of his disciples today I wonder what God thinks of disciples who allow people to remain homeless, allow the disabled to remain uncared for, allow children to go hungry, and allow [whoever “it” is] to continue to suffer. Christians often say the homeless are too lazy to work. Others say the disabled belong in institutions. Yet each individual has a reason for needing extra care and love. The young women who is homeless may be hiding from an abusive ex-husband. The elderly man who is disabled maybe a war veteran. We are so quick to judge and so slow to listen to the story behind a life that is broken. As Jesus’ followers, it is our calling to tend to the needs of the less fortunate.

As a person who has cerebral palsy, I understand the importance of a community, which works together for the common good. On the average day, I have three to five people coming in and out of my home to help me. The first personal caregiver comes at ten in the morning and is with me four to six hours depending on what I need during the day. She feeds me breakfast and lunch, helps me with shopping, does light housecleaning, and gets me to my appointments. Usually Kim, my step-dad, joins me for breakfast to see if I need his help with anything, such as fixing [whatever “it” is] I broke the night before or running an errand for me. The second personal caregiver comes around five o’clock to feed me dinner and [whatever “it” is] I need set up or organized for the night. Then there are the young man who cleans the pool once a week and my brother who mows my yard twice a week. I also have a landscaper who comes periodically to check on my plants. Although my color-coded planner is overwhelming, I am at ease with the constant flow of people in and out of my home.

Depending on others for daily survival comes naturally to me, and it is also what Jesus teaches us to do in the Sermon on the Mount (Matthew 5:3-13). The early disciples embody this by selling all of their possessions and taking care of those who need extra love and care. The apostles understand the importance of taking care of their own, because everyone needs help and love. It should not matter if you are homeless, disabled, or poor, because we are all children of God.

As Christians, we are to live in a community with each other and love and care for one another. This was important to the early apostles. They spent their days in the temple (Acts 2:46a) studying scripture and worshipping God the Father, God the Son, and God the Holy Spirit. At night, the apostles gather for dinner and break bread together (Acts 2:46b). Gathering as community builds relationships among neighbors, even between individuals you would not expect to get along. A community takes cares of its people.

There is no greater joy than gathering around a table with friends and family members and sharing a meal. In my family, dinnertime always involves laughter and loud talking with hands flying. No matter what kind of day you had, you can always count on dinnertime being entertaining, especially with my mom who enjoys finding the comedy in life. Even as an adult, I still love having dinner with my mom, because 1) I get a good cooked meal, and 2) I am able to discuss the day’s challenges with her and get her insights. Discussing your daily challenges with individuals who uphold the same morals helps keep things in perspective and keeps you grounded.

Thanks be to God!

Dear Heavenly Father, Thank you for blessing us with a community in the family of God. Gather us into your community where individuals love and care for one another. Lead us to welcome others into our community. Thank you for loving and caring for us as your children. Amen.

Reflective Questions

Please answer the following reflective questions in the comments below. Please agree to disagree and be respectful to each other. (If you have not already done so, please also take a moment, to sign the behavior covenant by commenting on it.) You can answer as many questions as you would like.

  1. What communities are you a part of?
  2. Who do you gather with to share a meal?

Third Sunday of Easter: Dealing with the Silence

Reading

Acts 2:14a, 36-41

Devotion

Peace be with you!

Every time we turn our backs on our neighbors, we turn our backs to Jesus and say, “Crucify him, crucify him!” Every time we do not feed the hungry or clothe the naked, we turn our backs to Jesus and say “Crucify him, crucify him!” How can we be a part of the tight group of apostles when it was our voices that screamed, “Crucify him, crucify him!”? Our sin and our sinful world turn us away from Jesus each and every day.

We know the guilt the Jews are feeling. Recently I heard the song “Car Radio” by Twenty One Pilots. The song struck me, because it talks about what happens when we have to sit in silence (as the singer does when his car radio is stolen)—we have to fill the void with unwanted thoughts of the past. We can plug our earphones in and drown out the people around us. Even without earphones, the world provides enough noise to keep the unwanted thoughts away—[whatever “it” is] in our past that we try to keep secret. In “Car Radio,” the singer says:

Sometimes quiet is violent
I find it hard to hide it
My pride is no longer inside
It’s on my sleeve
My skin will scream
Reminding me of
Who I killed inside my dream. (1)

The noise of Holy Week has now become silence. Jesus has risen from the grave, spent time with his disciples, and ascended into the Kingdom of God. The events of Holy Week fulfilled what was supposed to happen in order to give God glory. However, the good news does not ease the priests’ minds. The Jewish leaders  know that Jesus’ blood is on their hands. How can these leaders even think about entering God’s Kingdom? There is no way they enter the Kingdom of God, right?

We  have all probably had times when we thought we were not worthy to enter the Kingdom of God. What were these times for you? Maybe you betrayed a dear friend or a family member. Maybe you caused physical harm to someone. Maybe you have helped the devil one too many times. My silence causes me to think about the six years I spent with my ex—and the people I turned my back on to avoid making him upset and the fights I had with my parents. The dangerous thoughts come when I start asking myself, what if I had found Nathan, my childhood friend and boyfriend, sooner? Where would I be if…?

What thoughts hang in the darkness of your silence? Do you feel shut out from God when you face those thoughts?

Peter has good news for all of us who reject Christ in one way or another. We can repent of our sins and be baptized. The church uses these words so often that we forget what it means to repent and to be baptized. Repentance means to reorient our lives to be more like Christ by changing our minds and lifestyles. It means to feel remorse for turning our backs on Jesus and our neighbors. However, once we repent, we are welcomed into the Christian community and given entrance into the Kingdom of God. We are freed from our past mistakes.

When we repent, we can be baptized into God’s family. Baptism is the respond to hearing the good news for the first time and becoming a disciple of Jesus Christ. Our sins are washed away, and we are marked with a cross forever. You become a living member of Jesus Christ and are given a new life.

Once we repent and are baptized, we are given a game changer: God the Father forgives us for your sins and gives us the Holy Spirit to be with us in the world. Plus it is for all people—not just the Jews but the Gentiles. Everyone is included in God’s plan and invited to be a part of the Christian community. God believes in inclusion, not exclusion. We engage in exclusion only for our own benefit. God loves us so deeply that he used our sin—the sin that nailed Jesus to cross to ultimately conquer death.

Forgiveness is truly the greatest gift. When my parents divorced, I remember being angry at my mom for months. I would hardly talk to her and did not want to be around her. Then one day we talked about what was going on between her and my dad, and I understood the divorce was not up to me to solve. My mom forgave me, and I released my anger. Forgiveness flowed both directions.

I also love being led by the Holy Spirit. Sometimes I swear the Holy Spirit writes these devotions, because I find my words flowing so easily. The Holy Spirit has a way of using my ideas and thoughts to get God’s point across. If God left me to my own devices, I would not be writing these devotions, but here I am.

Thanks be to God!

Dear Heavenly Father, Thank you for allowing us to repent and be baptized. Help us to accept the forgiveness you offer us, even when we are messy and broken. Through your Holy Spirit, lead us through life’s challenges. Remind us to be mindful of your plan. Thank you for the game changer of forgiveness and the Holy Spirit. Amen.

Reflective Questions

Please answer the following reflective questions in the comments below. Please agree to disagree and be respectful to each other. (If you have not already done so, please also take a moment, to sign the behavior covenant by commenting on it.)  You can answer as many questions as you would like.

  1. Sit in silence and do nothing for five minutes. What were you forced to think about?
  2. What does repentance mean to you?
  3. How has the Holy Spirit led you?

 


 

Writer(s): Tyler Joseph, Copyright: Warner-tamerlane Publishing Corp., Stryker Joseph Music. From Twenty One Pilots album Vessel.  Released: Jan 04, 2013