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.

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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.

Happy 2014!

Peace be with you, Friends and Family!

2013 was a great year. I traveled to Utah, St Thomas and St Martin, St Paul / Minneapolis, Baltimore, and throughout the mid-west (Wisconsin, Minnesota, Illinois, and Iowa). I got to reconnect with many friends throughout the year. The highlight of my year was reconnecting with my childhood friend and sweetheart, Nathan. I found his mom, Jane, on Facebook in January and got to visit them in October. His parents got him an iPad for Christmas, so we can FaceTime since Nathan talks with his eyes and smiles. It is such a blessing to have Nathan back in my life.

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In 2013, I made some great professional achievements for 
God the Healer andas a New Testament scholar. I designed a new logo and redesigned the website. I am really proud of my logo, because it incorporates the circle for wholeness and  the Triune God – God the Father, God the Son, and God the Holy Spirit

I also did a painting to use in all of my PR for God the Healer. When I went to SBL/AAR, people enjoyed getting pens over just getting a business card, plus the pen they can actually use and be reminded of my website more often. I enjoyed using my BA in Marketing, which many people forget I have until I go all number happy on them.

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The biggest news of 2013 happened just a few days ago. I got a letter from The Edwin Mellen Press has agreed to publish five hundred copies of my MA thesis on John 9: the Healing of the Blind Man to be sold to universities libraries. It is a small step in the scholarly world and is no money maker, but nevertheless it is progress!

2014 holds so much promises. First, I am looking forward to seeing where my relationship with Nathan goes. Yes, we are dating. I am truly blessed with an amazing, loving soul mate who gets ME and just laughs at my anecdotes while reassuring me it will all be okay. Second, my MA Thesis will be published and sold to libraries.

I do not have any specific new years resolutions like in past years. I plan on continuing to work on God the Healer by writing weekly devotions. I also have four wedding to attend this year, which means I have four portraits to do. I am looking forward to painting this year. I also plan to travel and bike as much as possible.

Cheers to the unfolding of 2014!

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Many blessings,

E

MERRY CHRISTMAS: Enjoying the Small Moments!

This Christmas I am choosing the small moments of the season. Joyful and fun pictures being shared by friends and family, especially Nate and Elizabeth. Yummy Christmas goodies from friends. Holiday parties. Telling Kaylee she is going to get coal in her stocking if she keeps harassing Lily and Rosco (bits and pulls on their ears) but then realizing she does not understand or care. Hearing about how Nate sings along to songs that remind him of me. Spreading holiday cheer with Peggy.  Making the baked egg casserole for Christmas morning to share with Mom and Kim before she goes to work (happy to take over one thing for Mom so she can enjoy Christmas morning without worrying about cooking). Going over by Kathy and Ron for Christmas dinner and meeting their friends and family. Having lunch with Bekah and Sherri on the 26th. Celebrating Christmas with Dad and Sally, Nicole and family, and others on the 29th. I always enjoy watching my nieces open their gifts. And so much more.

Christmas Pups: Rosco, Kaylee

Christmas Pups: Rosco, Kaylee

Peggy and I spreading the Christmas spirit in our matching Santa hats.

Peggy and I spreading the Christmas spirit in our matching Santa hats.

Quick stop at the hospital to say Merry Christmas to Jon

Quick stop at the hospital to say Merry Christmas to Jon

Father Christmas Ball benefiting SOS, which helps those who need food and supplies in the area.

Father Christmas Ball benefiting SOS, which helps those who need food and supplies in the area.

Catching with the original bike shop guys, Gary and Mike. Oh how Peggy and I miss them!

Catching with the original bike shop guys, Gary and Mike. Oh how Peggy and I miss them!

I am also mindful of those who struggle during the holiday season. Please open your hearts and share your holiday traditions with those individuals who are away from home in your community.

Have a blessed Christmas!

Mannequins with Disabilities

Mannequins are created in the prefect image of human body, even the bigger set mannequins. Rarely do mannequins portray individuals with disabilities, and why not?

People With Disabilities React to Mannequins Created in Their Image is a youtube video released yesterday of how an mannequin designer costumed made mannequins to look like individuals with disabilities. I would like to share my positive reaction to the  video.

The video is moving as you see the individuals examine, touch, and feel the mannequins created in their likeness. The designer paid closed attention to the individuals and did not fix the imperfections.   The individuals examine the parts of the mannequins that visually represent the imperfect parts of their bodies – amputee, scoliosis, wheelchair bound, bad limps, etc. The video even captures the individual with the amputee put his prosthetic on the mannequin made in his likeness. It is a moving testimony of how individuals view themselves and how the mannequins change the views.

As a marketer and an individual with Cerebral Palsy who uses an electric wheelchair most of the time, I see three positive outcomes to wide use of mannequins with disabilities.

  1. Clothing designers will be forced to create clothes for individuals with disabilities, which look and lay nicely. For individuals who have scoliosis, have  bad limps, and are wheelchair bound, shopping for clothes can be a challenge, because clothes are designed for individuals without any imperfections and they do not always lay right on individuals with imperfections. I remember shopping for a formal dress last spring, and my mom making the comment in the fitting room, “The dress  would look nice on you if you were standing.” Of course, standing is not a solution for me, and the requirement to stand helped us to weed out dresses. I ended up having to wear my formal Christmas dress for the cruise. Mannequins with disabilities will help individuals with disabilities to see what clothes will  look nice on them without having to try  everything on.
  2. Sales within disabled sector will go up because of the direct marketing. Everyone likes special attention directed at them.
  3. Mannequins with disabilities can help raise individuals’ self esteem who have disabilities. We have a right to be counted and put in the public light. We have the right to look nice, professional, and comfortable. We have the right to  define our own personal style.
  4. Mannequins with disabilities will raise awareness about different disabilities and how individuals with disabilities lead “normal” lives. Yes, we like to look nice (even sexy) for our significant others and spouses. Yes, we need business three pieces suits and business causal clothes for our careers. Yes, we need clothes to go out with our friends on the weekend. Yes, we go skiing, biking, swimming, etc on a regular basis. And we will not apologize if it makes you uncomfortable. That is your problem. Perhaps the mannequins with disabilities will help to overcome negative stereotypes about individuals with disabilities.

Like anything else, the mannequins with disabilities could have negative outcomes. Individuals without disabilities maybe turned off by the mannequins with disabilities and their clothes, because they may perceive the clothes being  for individuals with disabilities. On the other hand, individuals with disabilities may feel like they are being put on display. Store managers should have various mannequins in each grouping to counteract these perceptions.

I would like to hear your reactions. What are your thoughts?

Blending Abilities

Poem by Erin M Diericx

January 28, 2012

A young woman with a dream that feet and wheels will someday occupy the same sidewalk with little distance in between. That one day people will call upon her to speak on different ability issues, on how one is healed by God the Father, and on inspirations of this life.

A young woman throwing color on canvases that beg to tell her story when words fail her. A story escapes her as yellows, reds, and blues blend together to make oranges, purples, and greens.

A young woman who sits on her Father’s lap releasing her day’s worries and blessings as she falls asleep. One day she will meet Him in all His glory and praise Him with all the angels.

A young woman loves life with her three precious four-legged children to share her life with on earth. They are her world.

A young woman blends abilities to meet life’s daily challenges in hopes of making others see new abilities as new ways of life. There is never just one way of doing things.