This is the Cheshire Cat’s smile from Alice in Wonderland. I paired with it the clear ribbon for invisible illnesses and the quote “I’m not crazy, my reality is just different than yours.” from the Cheshire Cat. Illness makes us different and makes us see the world differently. Our reality was changed the moment we experienced the first symptom. It does not mean that we are crazy or unfit for society. It simply means that we have a different perspective on life that is valuable to others and others can learn from it. I chose the smile because it is what most people see, they do not see the rest of us. Only our mask, the half-truth that we are okay.
Monthly Archives: September 2015
Question #5 —> Do you have a faith that makes a difference? Does knowing God made you beautiful matter? Posted by Facebook’s Invisible Illness Awareness Week.
I am a Christian. I live with the knowledge that God is taking care of me, He will provide, I have a purpose, a community, and I have answers. Yes it does make a difference. I am not alone and I have a lot of places to turn to. God is here for me and he placed people around me to keep me sane and cared for.
I still have purpose. I am not useless or worthless like people tell me. God does not want me to fail. He wants me to look to him for guidance as we figure out my , limits and needs and then he helps find our new spiritual gifts that fit within limitations. For example, when I first went to crafts for pain management I learned to make prayer shawls in a knitting circle. The doctor said to keep my hands busy with something repetitive and meticulous. My sister taught me to knit but I felt stupid knitting without purpose. That Sunday the Prayer Shawl ministry was spotlighted in service and a member personally invited us to the circle. I could never make my hands do knitting or crochet before I got sick but now I can use my new gift to bring comfort through prayer shawls or help in fundraiser by making washcloths sets. A Christian’s purpose in life is to glorify God and to edify His people. There is so much that needs done that it should be impossible to find nothing within your abilities.
I have answers. The funny thing about the Bible is that it has everything: adventure, lessons, humor, words of encouragement and rebuke, hope, heroes, mentors, examples, prayers, all kinds of people. If you have a question the answer will pop up. Difficulties with stupid people, loot to how Job dealt with stupid people. Not sure how to handle a caretaker at the end of their rope? Go look at Job’s wife. Troubles finding a good treatment plan? Look at Naamen, the woman with the bleeding disorder, King Saul or Paul. All found comfort in the Lord while suffering in unexpected places: Naamen the filthiest river around, the woman a touch, King Saul never healed but found comfort in music, and Paul never healed but found relief through God’s love. Feeling down? the Psalms are full of uplifting messages of hope and healing. Don’t know where to turn? The Letters (the books following the Gospels and Acts) are full of instructions, like James 5:13. Need a laugh? The prophets and judges tend to do epic and funny things. And if you get board, there is the non-canonical scriptures and tons of books written about God. There is a Bible for everyone, there are a lot of translations written in different levels and writing styles, illustrated Bibles, the Action Bible (comic book style), and even the Lego Bible.
Does knowing God made me beautiful matter? No. Knowing that God made me like Him does matter. God has emotions. He has anger, sadness, and rejoices. God knows what I am feeling, he can feel it too. I am sure Jesus had at least one headache as a human, the disciples probably gave them to him. Scripture says he lived like one of us and experienced things as we do-that would include not feeling well. I know nothing I pray is going to surprise God and I know that he will understand. Because we are alike.
Many ask about if I have asked to be healed why I haven’t. Or if my faith was strong enough I would not be sick. I do not think I have any unanswered prayers. I do think people forget that God says “no” and “wait” and “not yet” and “do you remember, my will be done, not yours?” I also think that when you ask God for something you need to be prepared for His answer, not the one you want. I have stopped asking for healing because I know the answer is “no.” This surprises a lot of people, but it is not in my personality to ask for something repeatedly or for something I know I cannot have. Instead I pray for help managing and for good days. When I changed my prayers I started dealing better and things I needed to cope came to me. When I asked for a doctor to cure me none would have me. But when I asked if a doctor could make this easier I got 2. My advice to anyone who thinks their prayers are going unanswered would be to change what you are asking for and to remember to praise God during prayer. Constructive prayer makes a difference in how we feel and how well we cope.
I believe that we need the full Christian experience to function to our full potential. We need faith, spirituality, and community. We need to practice Christianity, build Christian communities, and experience God’s love privately. I think that these things make a huge difference in my ability to cope.
My intentions for Invisible Illness Awareness Week took some planning because I did not find a blog challenge I liked. It ended up with me a little behind. First, I am going take questions I’ve been asked and find questions posted on the Facebook pages I follow about the invisible fight and answer them this week. The questions are going to be a little random. Secondly I am going to share my Disney awareness art. Disney has been with me since I was a child and has become of source of hope and encouragement for me since I fell ill. when my sister first told me to do art therapy I was watching a Disney Classic and it inspired my idea to paired movies with ribbons and hope inspiring quotes from the movie.
I would like to start by sharing Mickey Mouse. The tie-die ribbon symbolizes that all illness matter. Every fight is different but is equally challenging to the individual. It reminds us to stop comparing our struggles and share them so that we can gain hope and courage from one another. One part of the struggle we should share is our dream for a better “normal.” That is why I chose the quote from Walt Disney “All our dreams can come true if we have the courage to pursue them.” Out dream of a better normal can come true if we have the audacity to tell society to stick it. We need to advocate for ourselves and help others see past their prejudice and preconceived notions of what our lives should look like. We have to have the courage to try new doctors, treatments, and life-styles. It is hard and tiring and that is why it takes courage. I chose Mickey Mouse because he is courageous, flawed, and fails and gets back up all the time. I can see him dealing with an invisible illness with audacity.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: intractable headache, chronic migraine; simple-partial epilepsy.
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: 2005
4. The biggest adjustment I’ve had to make is: being very mindful of my environment. Sunlight, light, noises are my biggest triggers.
5. Most people assume: I am asleep.
6. The hardest part about mornings are: Sitting up and the bits of sunlight that still escape my curtains.
7. My favorite medical TV show is: Good Doctor and House M.D.
8. A gadget I couldn’t live without is: Computer
9. The hardest part about nights are: falling asleep.
10. Each day I take _9_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: controlled breathing and art therapy work a little.
12. If I had to choose between an invisible illness or visible I would choose: visible.
13. Regarding working and career: it has been taken away by this nightmare.
14. People would be surprised to know: I really am in pain every second of every day and I do not want narcotics.
15. The hardest thing to accept about my new reality has been: the loss of my independence, free-choice.
16. Something I never thought I could do with my illness that I did was: make it through my graduation ceremony.
17. The commercials about my illness: annoy me. They makes us look pitiful.
18. Something I really miss doing since I was diagnosed is: being on stage and going outside.
19. It was really hard to have to give up: theater.
20. A new hobby I have taken up since my diagnosis is: crochet.
21. If I could have one day of feeling normal again I would: play outside with my nieces.
22. My illness has taught me: plans are useless.
23. Want to know a secret? One thing people say that gets under my skin is: you must be feeling better…
24. But I love it when people: take time for me.
25. My favorite motto, scripture, quote that gets me through tough times is: Psalms 77
I cried out to God for help;
I cried out to God to hear me.
2 When I was in distress, I sought the Lord;
at night I stretched out untiring hands,
and I would not be comforted.
3 I remembered you, God, and I groaned;
I meditated, and my spirit grew faint.[b]
4 You kept my eyes from closing;
I was too troubled to speak.
5 I thought about the former days,
the years of long ago;
6 I remembered my songs in the night.
My heart meditated and my spirit asked:
7 “Will the Lord reject forever?
Will he never show his favor again?
8 Has his unfailing love vanished forever?
Has his promise failed for all time?
9 Has God forgotten to be merciful?
Has he in anger withheld his compassion?”
10 Then I thought, “To this I will appeal:
the years when the Most High stretched out his right hand.
11 I will remember the deeds of the Lord;
yes, I will remember your miracles of long ago.
12 I will consider all your works
and meditate on all your mighty deeds.”
13 Your ways, God, are holy.
What god is as great as our God?
14 You are the God who performs miracles;
you display your power among the peoples.
15 With your mighty arm you redeemed your people,
the descendants of Jacob and Joseph.
16 The waters saw you, God,
the waters saw you and writhed;
the very depths were convulsed.
17 The clouds poured down water,
the heavens resounded with thunder;
your arrows flashed back and forth.
18 Your thunder was heard in the whirlwind,
your lightning lit up the world;
the earth trembled and quaked.
19 Your path led through the sea,
your way through the mighty waters,
though your footprints were not seen.
20 You led your people like a flock
by the hand of Moses and Aaron.
26. When someone is diagnosed I’d like to tell them: you are not okay, but that is okay.
27. Something that has surprised me about living with an illness is: how fast people stop understanding.
28. The nicest thing someone did for me when I wasn’t feeling well was: watch our show together.
29. I’m involved with Invisible Illness Week because: awareness matters.
30. The fact that you read this list makes me feel: like someone listened.
Here is my second installment in my Sageuk Harry Potter Project. I was thinking about the Slythern’s attitude towards training lower born individuals and I think they would have been against it, they would have thought it a privilege for higher born. But I also think they would be prepared in case a lower born was sorted into Slytherin and that they would want that student to be very unwelcome. I think they would have a worn-out cotton uniform in the bag just in case.
Typical Slytherin: Our Slytherin is sporting a silk Hanbok. Her top is black with green accents and a stamped silver dragon. The top skirt is green with silver flowers and leaves and the bottom skirt is silver. Her hair is tied with a ribbon designed after the uniform tie and a headband that is green with a silver dragon embroidered upon it. Her key-chain is made with green knots, onyx beads, a silver locket decorated with a green snake and rubies, and a small dagger.
Lower born uniform: Old two-tone green cotton hanbok with back accent. I do not think she would be allowed special adornments. I gave her a white cotton ribbon to tie her skirt up, I imagine she would be forced into doing icky labor.
Today we were encouraged to come up with our own thing.
I do not respond to pain medicine. I relay on distractions. Coloring has been a major distraction for me since the beginning.
Tips for using color pages to distract you from the pain.
- Pick the right materials: Pick a coloring book or page that speaks to you or makes you smile. The theme should be fun and excite you. It is important to choose one that is not too simple or too complicated for your eyes. It will not help to choose a picture that overwhelms you, is boring, or that you can finish in two minutes. After you have chosen the book/page, choose the medium. Take into consideration: does it fit nicely in your hand, the effort it takes to use it, texture, and the smell. I prefer color pencils: no caps, minimal smell, not messy, easy grip. I also like twist-able crayons for big spaces.
- Pick a comfortable spot. Pick a place you can relax your body and manage your materials easily. I like to curl up in a chair or on my bed. I attach the page to a clipboard or a lap table (like for a computer) and have my pencils in a metal box opened next to me.
- Don’t be perfect. The end result is not important. No one else has to see it. Focus on the process and the act of creating. You don’t have to stay in the lines or worry about if the colors match. Embrace your inner kid and go crazy.
- Immerse yourself. It is when you immerse yourself that you can be distracted. Focus on how the color fills the page, changes the page’s texture, and changes it into something unique, something with personality.
- Let time slip by. Don’t look at the clock. Get lost in the experience. Set an alarm if you need to. Let yourself get completely lost in the art so that it can distract you from pain.
- other. Have water or snacks on hand so that you don’t have to stop. Try controlled breathing while you color. For example, take a deep breath every time you choose a new color. You could also play soft music or listen to a book while you color. When I am not listening to music, I will listen to my Bible app. You can also try to use coloring to help you concentrate during prayer or meditation.
I found these on pintrest. Another site I like is http://flamecreativekids.blogspot.co.uk/search/label/Colour%20in%20prayers
This site http://www.coloringpagesbliss.com/free-coloring-pages-for-pain-management/ has some pretty pictures but they are not free.
Day 19 is to draw or paint pain. I am a little nervous sharing this. I didn’t know what to draw so I illustrated a poem I started a while back, and then I finished the poem. The poem started as joke that Pooh Bear is right and my brain has been stolen and replaced with gray fluff.
A little explanation: Every object being reflected back I have used to describe my pain, aura, or how I manage. I wrote “pain” on her three times not in English to symbolize how I tell people I am in pain without telling them, like today I told someone “I’m doing normal” (curious I used Hebrew, Korean, and Japanese). I drew the reflection three times bigger then the girl to show how overwhelming and all-consuming the pain is.
I am still learning to draw, it is not something I am talented in. For example, looking back I don’t think my fireworks translated well and look more like colorful blobs. I googled pain art a bit ago, it appears like ti is usually not symbolic like this. I hope you find it tolerable.
What do I see beyond the looking glass?
What is it reflecting besides a lass?
Lady Luck looks to the pressing anvil,
burning campfire, swirling quicksand, gravel
for her muses, she spins the pain dial.
Click Click Click. What will Lady Fortune wail?
Sometimes too brightly do fireworks glare.
Stars and streamers dazzle and dance midair.
Lighting streaks by as the sun shines up high.
Blazing fires and windows never darken.
Oftentimes whistles, horns, birds, and drums shriek.
Explosions and buzzing resound all week.
Blasts of Pistol Shrimp and roaring bears live
alongside where broken T-Vs thrive .
Ninjas try throwing daggers with sorrows.
Dancers stomp merrily amidst arrows.
While fellows struggle with pills and wheedles,
acupuncturist use pins and needles.
Tornadoes swirl and turn towards OZ
whereas bottomless rabbit wholes applause
Wonderland. The topsy turvy worlds take
and breaks ideas, and things in its wake.
But Lady Luck cannot rig the dial.
Hope is strongly protected like a snail.
Faith anchored in Christ fuels the fighter,
rouses the dreamer, and helps the sister.
Pooh Bear, Behold my brain has been replaced
with Gray Fluff, Painful Stuff, and Faith that’s Tough.
For more from the Invisible Project visit http://www.invisibleproject.org/