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Kindness Day: In remembrance of Ellie #AutoimmuneDisease #JuvenileArthritis
🌼Kindness Day🌼
Eight year old Ellie Pruitt passed away suddenly this past February from complications of the autoimmune disease, Juvenile Arthritis.
Though Ellie was only 8 years old, her impact has been incalculable. In her short life, she helped raise thousands of dollars and broadened awareness for the Juvenile Arthritis Foundation through her family’s fundraisers at her elementary school in the Atlanta area.
Just after her tragic passing, Ellie’s “Kindness List” went viral, reaching all around the state of Georgia, as shops and restaurants changed their marquee signs in remembrance, elementary schools and churches honored her memory, along with social media and news outlets all sharing her message to “Have Fun & Love Always.”
This past Tuesday, to celebrate what would have been Ellie’s 9th birthday, October 20th, 2020, was named, “Kindness Day” by her town. To observe this special holiday, we wore her favorite color, yellow and celebrated her birthday by doing intentional acts of kindness.💛
Many on social media changed their profile pictures to yellow, while others shared kindness-centered memes, hashtagging their posts with #ElliesDay.
One woman cashed in her spare coins to leave a generous tip for her waitress on Tuesday. Another woman handed out gift cards to children for ice cream- YUM! And another young lady shared a photo of herself at a blood bank, donating in Ellie’s honor!
Legacy Ridge Assisted Living in Woodstock, GA organized a special balloon release to commemorate Kindness Day. Even though Covid19 prevents the residents from seeing their loved ones inside the facility, quarantine didn’t stop them from enjoying the beautiful fall day! They look lovely posing with their yellow smiling balloons. One resident loved Ellie’s list so much, she pledged to abide by the 4th rule: “Love Always.”
(article reposted from 2020)
Legacy Ridge Assisted Living at Neece Road
There were many more noteworthy acts to mention, but the people who don’t have access to social media are the ones who truly did the most in remembrance of #ElliesDay…the kids! Hundreds of kids from all around the area rocked their yellow, and quietly acted on intentional kindnesses to help others and give to their fellow students, teachers and family members in celebration of Ellie Pruitt’s heavenly birthday.
I dare say that the youngest participants will be the most influenced by this event, learning the values of love and kindness, to carry with them throughout their lives.
At the end of the day, Ellie’s family shared a post on social media to thank everyone who participated in the celebration of their late daughter’s birthday. They were clearly touched by how many individuals and businesses participated.
The below message was shared by Ellie’s mother, Heather Pruitt:
“I am blown away by what a huge success #Elliesday was. I started the day trying to keep a list of all the acts of kindness that I was hearing about but by about 8 am I had already lost track! I know that Ellie was smiling down on each one of these kind acts throughout the day and had the best birthday ever partying with Jesus! Thank you to everyone for making this a day for us to look forward to and not be afraid of. It was full of all kinds of emotions but we certainly felt all the love!💛”
Ellie’s Kindness List
This is Ellie’s loving, living legacy which she left with us to remind us all how we should treat one another.
Thank you, dear Ellie💛 We all need this reminder right now!💛
#KindnessDay #AlwaysLove #ElliesDay
(Reposted from 2020)
More info below:
AutoimmuneWarrior.org- Ellie Priutt
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Gift Ideas for a Chronic Pain Warrior
This gift guide is full of links to unique items to help you shop for your young, eclectic friend who just so happens to have Chronic Pain. *Starred shops are run by entrepreneurs with chronic pain.
Socks
When I asked my friends with chronic pain what they’d really love for the holidays, they said SOCKS PLEASE! The catch? Most of us have finicky feet and like our socks to be just right. Here are some of the fancy sock suggestions straight from chronic pain fighters:
Compression Socks by Support Plus
Smartwool.com has attractive and high quality over-knee socks and knee socks for women.
World’s Softest Socks by Hanes has a nice selection of extra soft and comfy socks and slippers that come highly recommended by the owner of very sensitive feet. See Footsmart for in-store shopping.
Heat Holders come in thermal socks for both men and women, tights, and thermal leggings. If your loved one always has cold feet, these might be their new favorite sock!
Compression Socks are my personal fave for my own picky (angry, control-freak) feet. I love a toe-less compression garment like this thigh high version from Truform on Amazon. Today, you can also find fun printed compression socks, like the mild compression socks from SupportPlus as pictured above. Compression socks help with circulation, swelling, and sensitivity, however keep in mind, not everyone can tolerate wearing tight socks.
Armwear
For those who have chronic pain in the upper extremities, supportive arm and hand gear can be difficult to find. Period. Throw in the need for protective cold weather wear and add the desire for attractive pieces that fit your loved ones personality…you get the idea. Unlike easy-to-hide protective legwear and therapeutic socks, the arms and hands are not as easy to disguise. Here are a few gift ideas and shops to help you find a protective garment that your loved one would be proud to sport.
These super soft Cashmere Fingerless Gloves/Arm Warmers by Blumen Kinder Seattle on Etsy are fitted, to the elbow (or over), and are available in multiple colors. These were another item my friends said they are hoping they receive for Christmas. I can’t think of anything softer or more luxurious than cashmere…. (Sorry, that was just me luxuriating.)
What about the boys? I scoured the internet looking for men’s long cashmere fingerless gloves/arm warmers and found them at Turtle Doves in the UK as well as the Etsy shop Lain Design in 100% soft gray cashmere! You’re welcome guys.
For those who prefer the protection and swelling control of compression wear for their arms, check out the shop Lymph Divas on Amazon. They make original tattoo-design compression sleeves for women that everyone will envy.
This full length compression sleeve from Juzo is advertised as “extremely soft against the skin.” Made from silicon, it conforms to the skin and moves with it, adding a thin layer of protection and light compression. It comes in various tones including chocolate brown and light beige.
Books
In my last gift guide, I advised shoppers to steer clear of books that tell people with any illness how they can become well again or heal. On the flip side, there are excellent books to read for LIVING with chronic pain, managing the symptoms, and coping with emotions and relationships in the new changing body.
Author/Poet Mary Jane Gonzales is a long-time chronic pain fighter and advocate for chronic pain awareness. She has published several soulful books related to living with pain; my personal favorite (thus far) is *Poetic Devotions for those in Pain, which touches at the heart of life with painful degenerative illness, loss, relationships, and connecting to personal faith in the midst of struggle. After reading, I shared this ebook with several friends, not all of whom had chronic pain and they also loved it and related to it. Available on PDF ebook and Nook.
In 2013, Cynthia Toussaint of ForGrace.org and Women in Pain foundation wrote her inspiring memoir, *Battle for Grace. For more than a decade, Toussaint has been an activist for the rights of people with chronic pain after her own life as a professional ballet dancer was changed forever. Read about her long time relationship with her partner, the loss of her body, and how she found new purpose and passion through her bewildering conditions, including CRPS. Available in paperback and ebook.
The Measure of our Days and The Anatomy of Hope are not books about Chronic Pain, however I wanted to include them here as gift ideas. They made an impact on me in the first years after my diagnosis and I have never forgotten them. Multiple, real life, patient-centered stories depicting how people find hope in the face of rare and terminal conditions might speak to you or your loved one as they spoke to me over 11 years ago.
Or, give your loved one a gift card so they can download the ebooks on their wish list. Visit this page for a comprehensive list of books from the American Chronic Pain Association.
Distraction Therapy Gifts
Art Journal Courage: Kohl’s
What most people call “hobbies,” people with chronic pain call “distraction techniques.” These are captivating projects which don’t take too much physical endurance but help us busy our minds and hands as a method to fight against pain overtaking us. Creative art projects, crafting, playing video games, playing musical instruments, doing puzzles, board games, cooking, digital editing, and coloring or painting in adult coloring books are some of the ways in which we might distract ourselves from pain.
Recently, scrapbooking and journaling merged to create a new trend in beautiful artistic journals. People can document their lives by incorporating writing, painting, drawing, photos, and collage. If you know someone who might be interested in a project like this, pick up a Smash Book at a Kohl’s or Wal Mart.
Comfort Items
Since we have to spend a great deal of time at home resting and recovering, comfort is key! Think about the coziest, softest thing you’d like to snuggle up with, and that’s a great place to start shopping. I prefer vibrant colors in my room and faux fur anywhere my hands wander.
Check out this Blanket Foot Tent at Sears for $22. If the touch of the linens keep your loved one awake at night like many of us with Allodynia (pain to touch), this awesome tool might help your loved one get some added zzz’s.
On the flip side, a weighted blanket might solve their “comforter anxiety” as my friends and I like to call it. These blankets will stay put and are known to reduce anxiety and increase Serotonin by adding gentle weighted pressure. They are also made with very soft fibers which are attractive to anyone with chronic pain. Find a wide selection of colors at the brand new shop, *Comfort Hugs on Etsy.
There are so many wedges for the bed. Some go underneath our legs, to prop our legs up, special pillows to rest between our knees. We have wedges for our backs, and piles of pillows we shift all around to try to get comfortable. It’s difficult to suggest one kind of wedge or pillow that might add to your loved one’s comfort. However… a giant teddy bear might be a great and unexpected fill-in, and a really comforting and sweet gift, too!
Therapeutic
In my last gift list, I noted the wonderful benefits of epsom salt baths for aches, pains, and spams. However, bath soaks are not possible for everyone with chronic pain conditions, unfortunately. This unscented Epsom Salt lotion from Morton Salt allows for your loved one to get the benefits of Epsom without the need to get in and out of a hot tub of water. It is available at Wal Mart and Walgreens for about $8.
Guided Meditations for Chronic Pain on audio is a nice add-on item or stocking stuffer for anyone with pain. Stay clear of the ones that claim to “cure.” Instead, look for guided meditations, mindfulness, or visualizations aimed to help “manage” or “cope” with chronic pain. Mindful Meditations for Pain Relief has excellent reviews online by pain patients. Though I have never tried this particular audio book myself, I do utilize mindfulness and meditation as a coping strategy for my own pain.
If you spend a little time digging, you can find some of the coolest adapted walking aids! The flames cane featured above is from the shop, Fashionable Canes which was made popular after replicating Doctor House’s canes. Similarly, the shop Cast Coverz has a wide selection of fun and eclectic crutch covers and walker covers to reflect your loved one’s personal style.
These items might seem silly, but personal hygiene is one of the most frustrating and tiring parts of the day with chronic pain. Here are a few personal care items meant to help reduce the strain and pain of getting ready. If your loved one has trouble with her hands or arms, this EZ Comb is not only easy to put in, it’s simply a great hair accessory! It does the same work as clips, ponytail holders, and fancy hair combs, but one adjustable hair piece does all the work. If holding a hair dryer and comb is a daunting task, this wild-looking contraption might help her get ready with less pain. If this Soft Hood Bonnet seems too extreme, there are also hair dryer holders available to install. What about a spinning, heated, blowing hairbrush by John Freda? It seems like a must for anyone who has pain or weakness in one arm/hand.
Awareness
Zazzle.com/MixyPixie Awareness Tees
If it comes with a ribbon, shares information about your loved one’s condition, or encourages your loved one, then it falls under the category of “awareness.” They are everywhere these days, and many shops will even customize an item with your particular ribbon color (if you ask nicely).
The Etsy shop, *Tea Bag Embroidery creates sweet little awareness satchels for carrying medication and cell phone. With messages like “Fibro Hope” and “RSD Sucks,” these are truly functional items which spread awareness wherever you go.
There is an array of t-shirts and sweat shirts with awareness ribbons and funny sayings to choose from. Big online stores like Zazzle and Cafepress have a huge selection of awareness apparel, mugs, cell phone covers, etc. with original designs by various sellers. My own shop on *Zazzle.com is pictured above and donates a portion of its proceeds to RSDS.org.
I also wanted to share this new collection of “empathy” cards from *Emily McDowell. If you have never known just the perfect thing to say to your friend struggling with a serious illness, but you want them to know you always have their back, these cards are funny, sweet, beautiful, and say it all. Like this one:
EmilyMcDowell.com Empathy Cards
No matter what you decide to give to your loved one with chronic pain, your support and un-moving presence in their lives is immeasurable to them. Your friendship is a gift!
To see funny chronic illness gifts and fantastic adaptive tools to help your loved one around the house, visit my Pinterest boards: Spoonie Gifts and PJ Chic. Read my last gift guide here for gift do’s and don’ts when shopping for your Chronic pals. Thank you for visiting,
Happy Holidays!
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Gift Ideas for People with Chronic Illness and Disabilities
If you are shopping for a loved one with a chronic illness, long-term illness, or disability, you may feel unsure of their needs, wants and special daily circumstances. Here are a variety of gift ideas meant to inspire, comfort, entertain, and are still appropriate for someone who is mostly confined to their home or uses a walking aid, if applicable. Here are several gift ideas along with advice and links to help you shop!
*Starred shops are run by disabled sellers.
Internet Subscriptions
Streaming video allows your chronic friend to watch movies and television any time instantly from anywhere. Especially on those bad days when doing nothing but resting is the best and only option, distraction therapy like settling in to watch great movies and television is a wonderful gift they will certainly thank you for. Netflix, Amazon Prime, or Hulu Plus are a few of the most popular video streaming subscriptions, and they all cost about $100 per year. The Amazon Prime subscription also allows access to a wide variety of ebooks, audio books, and music, alongside streaming video.
The Amazon Prime 2-day shipping feature is an great option for anyone who has trouble getting to the shops. In certain areas, Amazon has rolled out Fresh, a grocery delivery service which is another fabulous gift subscription.
An audio book subscription to Audible is a sweet gift in my opinion! If your loved one is like so many of us with chronic illnesses, reading becomes a tricky task due to blurry eyes, migraine headaches, brain fog, and more. Audio books can make reading enjoyable once again. It may or may not be on my Christmas list this year (hint dropped!).
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How to Read a Newspaper
How do you feel when you hear that someone with your same condition has gotten well?
This blogger explores the honest thoughts and feelings she and so many of us experience when a fellow Spoonie recovers.
I hope you enjoy reading this post as much as I did:
Scenario: we read a newspaper article about someone who’s found an instant cure from (insert Spoonie condition of your affliction) after a relatively short amount of time. Our initial reaction probably includes some combination of these thoughts:
They were never ill in the first place.
They were ill but it’s not true that they are now well.
They can’t have had what I have.
It’s true that they recovered but for a different reason.
It’s great that they found a way to get well.
If I try that will it work for me?
I’ve been ill much longer, I’d know if that works.
Why have I been ill so long? It’s not fair.
The newspaper has got it wrong.
I think these reactions could do with some unpacking.
They were never ill in the first place.
After we’ve got over our initial reaction this thought is probably the easiest to kill…
View original post 1,425 more words
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You are Never Too Messy to Matter
Over the last 10 years of chronic illness, people have told me that I will be healed if my faith is strong enough, that I am being prepared for something greater in my future, that all of this pain, loss, and disability will be given a special meaning some day. But, I believe that our lives are meaningful even in the midst of the darkest struggles. We don’t have to wait until life becomes perfect to attain purpose and perspective.
In the first couple years after I was diagnosed, college friends told me praying harder would heal me, one suggested the sins of my parents or grandparents may be expressed through my illness, family members sent me books about focusing on God’s healing promises, and I was prayed over for healing at church more times than I can count.
I was so angry and frustrated at everyone! God wasn’t healing me, I was getting worse! Why didn’t they understand? But no one did… I felt all alone to face this new monster eating away at my body and taking down my dreams and abilities one by one. I had such a strong confidence in my purpose, in my “calling,” and I didn’t know why those passions would be given to me, if only to be ripped away.
I do believe God has the power to heal my body. I also believe that healing can come in other forms as well. I used to pray and pray for my body to be healed, for the horrible pain to go away, and for my life to go back to the way it was. Of course I did. Of course I want my pain to go away and for life to be easier. Everyone in pain wants that! As life became a one-day-at-a-time struggle for survival, talking to God changed also. My heart desired to be of service to others (on support groups, online, in my relationships, etc.). Over time, I realized those prayers overtook the ones begging for physical healing. I believe there are different kinds of healing beyond physical wholeness that I hadn’t thought about before chronic illness, or during my first years living with it.
In each of the instances with my friends and family, they were showing up in the only way they knew how to offer hope and support. I’ve since learned that the people who show up are the ones to hold onto- sometimes they take some time and guidance to figure it out though.
During the storms in life, it is so common to be told that when the storm lifts, we will use what we’ve learned to help someone else, or we will have a greater sense of clarity. Well, when the rain doesn’t let up, when your body is constantly beating you up, if you are terminally ill, there is no waiting for healing to make use of your life today. Loss of health forces us each to look at our mortality and time in a new way. The desire to make a difference in the world doesn’t stop just because one’s legs, nervous system, or liver is failing. For so many remarkable individuals I have met over the years, illness can even inspire a new-found purpose, passion for growing in new ways, and redefining success based on what they hold most precious vs. what society has told them is of importance.
If you feel as though your purpose has been lost, and you don’t know why your life has taken this sudden detour, please know that you are not alone, and you are still on a path that is your own. You have not been forgotten. Your life still has meaning, even now- even in the mess you feel you are going through. You don’t have to wait for the perfect body and perfect life to be useful. If I had waited for that kind of moment, I think I would be waiting for eternity! Even in the middle of your struggle, your story matters. What you are going through matters.
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“Having a chronic illness…like being invaded”
Quote by Allison Lurie, writer of The Last Resort:
“Having a chronic illness, Molly thought, was like being invaded. Her grandmother back in Michigan used to tell about the day one of their cows got loose and wandered into the parlor, and the awful time they had getting her out. That was exactly what Molly’s arthritis was like: as if some big old cow had got into her house and wouldn’t go away. It just sat there, taking up space in her life and making everything more difficult, mooing loudly from time to time and making cow pies, and all she could do really was edge around it and put up with it.
When other people first became aware of the cow, they expressed concern and anxiety. They suggested strategies for getting the animal out of Molly’s parlor: remedies and doctors and procedures, some mainstream and some New Age. They related anecdotes of friends who had removed their own cows in one way or another. But after a while they had exhausted their suggestions. Then they usually began to pretend that the cow wasn’t there, and they preferred for Molly to go along with the pretense.”
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Holiday Heroes, a love letter
Those with chronic illness, chronic pain, and disabilities are all heroes to me. I know yesterday was hard. The holidays are always a challenge no matter where on the spectrum of disabled you are, celebrations push us to our limits.
We mentally feel pushed to be up and feel grateful or in the spirit of the season. When pain and illness bombards our thoughts constantly, at times it can feel like a mountain to climb to find a hint of the same holiday spirit we once felt. Physically, we are pushed to do the things we really want to do like spend the time with the people we most want to see, bake, shop, go to sporting events, etc. Some in the “Spoonie” community cannot leave home any longer or their illness is such that they are now confined to a bed, yet they still find ways to express gratitude and the spirit of the season (heroes).
Many push to try to do things we’ve always done despite our declining health like cook, or play a sport or game with everyone else. Even though I’m confined to a bed in a back room while the family is having dinner and festivities, this year I pushed myself to change into something cute. Honestly, changing clothes took away from my energy and added to my pain; I know I could have used those spoons to spend more time with a loved one later on. When I was still able to cook, I overdid it in the kitchen and my pain would spike. The truth is, some of our actions aren’t for other people, some things we do are just for us- and it’s healthy! I have spent the last few holidays either in days old pajamas or in the hospital, so changing clothes helped remind ME of who I used to be. And I’m so grateful I had some extra spoons to do something so frivolous this year and still have some quiet moments with a few loved ones as well.
I know spending time around your family takes so much courage for fear of getting bumped and pain skyrocketing, eating a bite of something that triggers your body to become inflamed, or an unexpected noise setting off a migraine or cluster headache- these are some of the sacrifices you make for LOVE. You are brave and you are warriors. If you always listened to the will of your body, you may never open your eyes each day. Your body tells you NO!!! But your heart calls. Your heart is always stronger. And I admire each and every one of you. You teach me courage. During the holiday season, we make many sacrifices: trading spoons for love of others and longing for who we still are inside. Balancing emotional needs and physical needs. Always juggling.
That is why those with chronic illness and the disabled are my heroes.
*
“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.” ― Mary Anne Radmacher
Articles to Reinvigorate your Spirit:
“Quiet Strength” by Choosing Hope
“The Deepness” by A Beautiful Life with Cancer
“Through it All” Poem by Mum C.
“Is Jesus Enough to get you through the Lonely Moments?” by Rest Ministries
“Square Plates are an Abomination on the Face of a Dying Earth” by Snotting Black
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Learning the Gift of Gratitude
Have you ever thought that you are the best friend you know? Are you the most responsible, caring, compassionate, shoulder-to-cry-on kind of friend who drops everything to be there for the people you love? Have you ever wished for a friend like yourself?
I used to think that. Although I so adored the people in my life, there were times when I felt some of the things I did for them went under-appreciated. When I had problems in my own life, when I needed someone to make me feel better, I felt empty handed. Sound relatable?
I was a doer, a giver, I needed to be needed. I set my life up so that I was the go-to person for all of my people. I was the Olivia Pope of my world. Even when I moved to a different state, within months I was the one person anyone who knew me could count on. I constructed a safety net for everyone else, but when my own life turned upside down in the form of chronic illness, I felt there was no one to lean on.
Even after illness set in, things did not change. In fact, I felt that no one had a grasp of anything I was going through. For the first time in my life, I was desperate for some care from others and it seemed that no one knew what to say or do for me. Looking back now, some people were generous, and a few did reach out to me. I think it’s because I never learned how to ask for help before, I couldn’t recognize a gift of compassion and I was too prideful at the time to see when people were trying to be there for me.
I was so programmed to say, “No thanks” and “I’m fine” when people tried to help me out. I think I probably pushed them away without meaning to. I didn’t fully learn the gift of receiving until later on.
Sometimes tragedy is like this. The harder things get, the more clarity we can find.
You get so accustomed to being self-reliant and needed by others for so long that when it is time to accept help from another person, it’s like a foreign object that you naturally repel.
People who cared about me wanted to be there for me, but I usually shut them down. There were those who never knew what exactly to do or say, but they tried to just be in my life. I know now that the people who stick around in uncomfortable times are keepers.
Letting loved ones know how exactly they can help makes the people around us feel less powerless. If you give your loved ones specifics, they can learn how to better help with your complex needs. Hints and mind-reading definitely doesn’t count.
I know from personal experience that receiving help and asking for what you need can be a humbling experience. It’s lovely to help others but it can be humiliating when you’re the one who needs the help. That is the first thing I had to try to accept. You will have anger about it…try not to take it out on those giving to you. Don’t say things like, “I’m sorry you have to do this for me,” or “you will get tired of helping me,” or “I can tell you don’t want to be doing that for me.” Don’t critique their attitude, or predict future resentments. Instead, lead with gratitude. Say “thank you.” Your appreciation makes others feel positive.
Gratitude isn’t only an emotion, it’s also a state of mind, and a form of personal expression. The great thing is you can choose to be grateful even at times you don’t necessarily feel that way.
You already know how good it feels to do for others. Learn to be a gracious receiver.
Remember, you are worthy enough to accept the very thing you do all the time for other people. If the situation were reversed, would you be there for your loved one in the same way?
It has taken me a while to learn that lesson. I am still learning… Those who give of themselves are always teaching me to be humble.
I had to consider why my life had always revolved around being helpful, yet I could not receive the help offered to me. To top it off, I was too prideful to ask for help.
When I was finally able to say “thank you” and mean it from the bottom of my heart without resentment, anger, shame or fear: gratitude swept over me and lit up everyone in my life like Christmas lights.
Before, giving and being needed was how I defined myself. Learning to receive showed me the love everyone around me had to offer.
This lesson has been such a challenge; I am still learning to receive and to appreciate the blessings in my life, but the gift of gratitude has been a life-changing lesson. I believe learning to receive with a grateful heart makes a person a more understanding, more compassionate giver.
People love you and are there for you, too. Maybe not in the way you want them to be, but they might be exactly what you need. You are worthy of their love and their help. Please don’t miss out on receiving the blessings that God is trying to bring into your life.
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Stronger than Monsters: Chronic Pain
(Trigger Warning: Addresses thoughts of death.)
Before a sprained ankle which turned into the chronic pain disease they call Complex Regional Pain Syndrome changed my life at 22 years old, I never knew anyone could feel that much pain. After the doctors told me that this would be PERMANENT, I thought, “I cannot go on like this.”
When I learned that the pain of CRPS can spread all over the entire body and into the organs, I said, “I refuse to live that way.”
Other survivors told me of their broken un-moving bodies from the damage and spreading of CRPS over time and I knew: I would never be able to endure it.
Even in all of my pain, I knew there was so much more to be had. If I was at my breaking point of what I could tolerate then, the future I was promised would never be one I could shoulder.
Fear and doubt spread into me like the pain biting into my body. The fire in my bones was a kindling waiting to ignite the rest of the forest. The pain living inside of me was a monster whispering promises of pain and ensuring me a future of horrors. I knew I could not live through it.
*
All of my nightmares came to visit me. More, in fact. The years I spent in fear of the pain to come could have never prepared me for the obliteration of my senses which would ensue in these recent years. I cannot say I am still standing, but to say I am still here and just to be coherently typing this is a tremendous miracle, celebration and gift. Yes, even in worse pain than ever before, and much worse than I could have ever imagined- it is still a gift.
The thing about pain is that most people see the other side of it. You go through the hard parts and crawl out on the other side feeling stronger. But what if the worst pain you ever felt was a only a promise of more terrible things to come? That is what some illnesses like RSD, CRPS, MS, ALS, Chiari Malformation, and Arthritis often are: degenerative, debilitating and extraordinarily painful.
I thought I saw into my future of pain, but I could never have foreseen exactly THIS.
This journey has been unique to me as now I realize everyone’s is. I so feared my future because I believed mine would look like someone else’s that I had read about online or was told of in a doctor’s office, but no one’s life is so simple. I have met more unimaginable monsters– but I have survived all of them when I once was sure I couldn’t bear my first few years of chronic pain. I used to live each moment in fear of the future and now that the future has come to pass, how can I continue living in fear? I have fought worse monsters than I was preparing to battle, and I am more grateful to be living now and less fearful than ever before.
Don’t expect the worst. But if your worst comes, don’t assume you know how you will weather it. The strength and resources come at the step you need them, not years or months ahead. Have faith. You are so much stronger than you know.
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“Those who wait for the Lord will gain new strength; They will mount up with wings like eagles, They will run and not get tired, They will walk and not become weary.”
Isaiah 40:31
“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” Joshua 1:9
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Featured artwork by Born in November. Thank you to the artist for allowing her powerful, striking photograph You Could Feel the Sky to be displayed here. Please go to her shop and buy one of her conceptual art images or visit her home decor shop to purchase a gift for the holidays.
aBodyofHope 