Category Archives: Friendship
Imaginative magic…..
I’m so pleased to share a favorite blog from a friend and fellow chronic pain warrior, “Pain in the Beck.” In the below post, she did me the honor of writing about how we first “met” online ♡ To me, she has been a butterfly emerging from the shell that illness couldn’t hold her in.
Follow PainintheBeck blog as she writes about her life in NYC as an artist, a student, a chronic illness warrior, and shares her adventures with family. You will be rooting for her, and you’ll be inspired to root more and more for yourself because of her.(Read article in full at the link below.) Thank you for reading and following.
Every day is is Hope Day here at a Body of Hope blog, but every Wednesday is #HopeDay all around the web. Spread that good stuff around 🙂
Hello friends!
I’ve been busy these last few days, trying to help my daughter get ready for her high school prom. Although I still can’t believe that she’s done with this chapter, I’m very excited to see what’s next.
We attended her final high school concert last Friday evening. It was fantastic. The students performed music, danced, sang. It was a fun night. And I got some costume ideas out of it. The best, however, was seeing our gal, on the stage singing “Rebel Rebel,” with her class band as backup. This, while playing the electric ukulele.
My husband has been a musician for most of his life. Our daughter, however, never played an instrument until high school. In a mandatory freshman class, she started with guitar. The expression, “like a fish to water” comes to mind. After exceeding the complexity of the class, she taught herself advanced skills…
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What to say when you don’t know what to say…
In the face of pain, heartbreak, and crisis, most of us don’t know how to react or respond. We want to be an encouragement, we want to comfort, we want to relate in some way…
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…With a little help from my friends
Happy New Year, everyone! I have now been blogging since August, 2014 and I’ve met so many amazing people along this writing road. These individuals have taught me, inspired me so many times and in special ways, and they have become my friends.
Friendship and community were something I least expected from blogging, a venture I assumed would be one of solitude, but it has shown to be incredibly interactive and instructing to me because of all of you. It has been much too long since I have thanked my fellow blogger friends appropriately, so I’m going to finally accept an award that was generously given many months ago. Please check out the blogs below and follow them. [Full disclosure] I don’t spend a great deal of time each day reading blogs, so trust me when I say that they are well worth your valuable time.
Earlier this year, the hot steamy Migraineur blogger at SexyAchyMoody.wordpress.com took a day off from giving advice on how to stay freaky and fabulous with chronic pain to award my blog with the Encouraging Thunder Award! Thanks girlfriend!
Encouraging Thunder is a spell that grants the gift of thunder and protection for bloggers so they can master their true purpose. It was created by Raymond, founder of encouraginglife.co.
[Cue foggy mist, no… not brain fog.]
And so, I now bestow the Gift of Thunder onto these wizards of the written word. May they be empowered to express themselves freely and truly, with magic of the pen… and the computer…and spellcheck…as their’s is the only voice like it in the world.
FindingoutFibro: My best blogging buddy (BBB), Jess, is a young woman sharing her life with multiple debilitating chronic conditions. In this article, Distraction Therapy, also published with Axis Dance Company, Jess shares the free, creative methods she employs to help her cope with her disorders. Jess has a broad range of knowledge on many aspects of health she shares through her blog, and is a passionate advocate for ableism and women’s issues.
IamChronicallyWell: Also known as “Chronic Nicole” discusses Selena Gomez’s recent Lupus diagnosis, and how the media has treated her, in comparison to how most people with chronic illness feel when they are newly diagnosed in Celebrities are Just like us part 2. On a regular basis, Nicole practices tongue-and-cheek writing so well that she should have a disclosure for readers with weak bladder conditions. Just sayin…
TheGadAboutTown: Mark shares his research of culture, literature and history, seen through the lens of his own witty, charming perspective. It was difficult to decide which of his posts to share with you, as they are always excellent. In this post, For Your Eyes, he asks the timely and wise question, “how much of our lives should we expose to the public?”
LifeinSlowMotionBlog: Both a chronic pain patient and professional counselor, this blogger shares what pain is teaching her. She asks the kind of questions that keep us up at night, the ones that no one else around us understand, she asks and explores through a compassionate and spiritual heart. In this post, How to Find Online Support when you have Chronic Pain, she guides readers to the best places on the internet to find caring support groups.
JustPlainOlVic: Vic, is a true family man, a father, and a husband. But beneath the surface of “Plain ‘Ol Vic,” you learn he is carer to a wife with Bipolar Disorder and Chronic Pain. Each day in his journal-style blog, he shares his life balancing work, raising his children, and being the support he has vowed to be for his spouse. In this heartfelt post, he shares a life lesson his grandmother taught him, and how it applies to his life today. [If you are on the flip side of a carer like Vic, I urge you to follow his blog.]
LivingwithObstacles: My best online friend, Julie began blogging this past year just after a heart attack induced by the effects of her 16 year battle with CRPS/RSD changed her life, yet again. On her blog, she writes about family, teen addiction, motherhood, chronic pain, loss of career, and how to rebuild on broken ground. Julie is a true warrior, and she has fought and won more battles than Archie Moore (most career knockouts in boxing).
KathleenBurkinshaw: is a blogger, mother, wife, chronic pain patient, and soon-to-be author of her first book! Her posts are like cracks of her soul shining right through the screen into yours. In this beautiful piece back in March, Unconditionally, she shares the meaning of real unconditional love, after losing 2 close family members. Stay tuned for Kathleen’s writing career to skyrocket, and you can say, you knew her when…
SublimeMercies: Charlotte Issyvoo makes a wheelchair and cane look downright en vogue! She is not only a chronic pain blogger, she photo-documents her vintage ensembles, is a passionate advocate for child abuse, and she shares her feelings on women’s rights among other topics she is always well-versed in. Here, in one of her latest posts, she shows us how to bring the best of 1970’s fashion to our wardrobe using pieces we already have. Move over Ferra!
TheSickDiva: One of my closest friends, Jenny, an RSD blogger, shares her struggles with chronic pain and the health system. No matter how severe her pain is, she leaves you with a message of hope, love of family, and keeping God first. Her latest post on her experience with the medication, Lyrica, will make you think differently about your own medications: How Vanity Saved Me.
Mary Jane Gonzales is a long time author and advocate in the chronic pain community. Find her on Facebook uplifting people in pain, sharing research, new blogs, poetry and hope for the weary on In the Blink of an Eye. Also, check out her brand new poetry share group, Poetic Hearts for a supportive community of creative writers and those who appreciate original poetry.
Escharae writes about her personal path through Multiple Sclerosis as a woman, student, and young passionate person working through the questions of life and illness all at once. On her page, you’ll find compelling videos of neuroscience advances, infographics of health related issues, and personal accounts of her own life. Find out more about how her journey with MS begins here on her MSanniversary blog post, and where it has brought her thus far.
To every single reader and fellow blogger who drops by, follows along on Bloglovin’, WordPress, Twitter, or by email, spends your very valuable time reading and showing your love, thank you so much! I feel truly humbled. Wishing you a happier, healthier new year ahead.
~Peace~
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Sprinkle Happiness: Pay it Forward Initiative 2014
A couple months back, an old friend posted a message on Facebook asking which 5 friends of his would participate in a Pay it Forward Initiative for 2014. “I WILL!!!” I said (probably adding a smiley face- ok, more like 3 smiley faces). I agreed to send some type of small gift or mail to surprise 5 different people during the remainder of the year (besides birthdays or holidays). This post is not to brag about doing something nice. So many other people participated in this effort throughout the year…it’s not about me. But I want to share my part and what I learned from the Pay it Forward Initiative to hopefully inspire others to do something similar.
A while back, Charity Elise, the artist of the first featured piece above sent me her most popular image after we conversed online. I had fallen in love with her art posters long ago and was excited to finally find her shop! In my mind, she sort of kicked off PI.F. for me by doing something so kind and generous. I imagine you have seen her work before on social media or Pinterest. This particular image and quote is extremely popular, especially in the chronic illness community. It’s not surprising people who are not feeling well are so drawn to such a vibrant image with an encouraging quote to match. Her beautiful Voltaire quote piece is hanging on my wall beside my bed and I am inspired by both her artwork and her kindness daily.
When I signed up for P.I.F. a few months later, my Voltaire print from Charity Elise called out to me (Send me! Send me!). When a fresh print arrived to my new acquaintance, she was being hospitalized after an emergency health scare. She said the artwork from a new friend helped to brighten up a dark time. When people have chronic illness, we are sick every day and might be in the hospital frequently. We don’t get flowers or cards that say “get well soon.” So getting something from a friend now and then that says, “I still care you are sick“ can mean the world.
These adorable spoon earrings went to my “Spoonie” friend who collects jewelry. Aren’t they soooooper cute?! Something else lovely happened with this purchase I just HAVE to share. Heidi, the creator of the Hammered Spoons shop was so inspired by the Pay it Forward Initiative, she refunded my payment and sent them herself! Amazing, right?! Heidi is a chronic illness survivor as well, and supports awareness causes through her hammered spoon sales. Like one giant hug of goodness going on!
My good friend and I were talking a while back about how her favorite face cream had been discontinued after using it for 30+ years. She hasn’t found anything else she isn’t sensitive to in the years since having to stop using it. I did a little digging and learned that her favorite product is actually still being sold; so, I was very excited to surprise her with a tube of her long-time face product! Reunited and it feels so good!
I read Still Me by Christopher Reeve about 10 years ago when I was first diagnosed. I remember listening to it on audio in my car with tears streaming down my face, but his amazing story empowered me to persevere. I still think about that book often and how much Reeve’s story has impacted me and so many others. A family member has recently been diagnosed with Arthritis, so I sent her this book. I pray she finds the same comfort and encouragement that I have found in his powerful words.
Lastly, I made something special for my Facebook friend who is going back to school. I covered a notebook with a magazine clippings collage. While I was doing this craft, the past month has been increasingly difficult for my friend. I wish I lived closer so I could give her a big hug, but this little creation will be my hug to her. I hope every day she is at school, she will keep it with her and know how proud I am that she is pursuing her degree despite all of the challenges in her life.
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Pay it Forward is not like a chain letter. I’m not supposed to be GETTING 5 gifts in return. However, since signing up for P.I.F., I’ve been receiving sweet little things in the mail from different friends of mine. One was a beautiful, unexpected painting my friends created. It’s so bright and colorful- I love that it reminds me of our long-time friendship. Another friend sent wonderful handmade stationary she put so much effort into making.
I have received more in my spirit through the giving process than I can put into words here. The biggest surprise with P.I.F. was that each of the people I sent something to truly needed a pick-me-up and each felt the timing of the gift was perfect. Sending something out of the blue to a friend or acquaintance… just a post card or a little unexpected “I’m thinking of you” snail mail can interrupt someone’s day with kindness and light like you wouldn’t believe.
Hey you…Yes YOU!!! I would like to challenge YOU reading this to Pay it Forward to 5 people in 2015. I would love to hear how you sprinkled kindness over your world in the coming year. I hope you see blessings in abundance rain down on YOUR own life in 2015. Peace.
******
Thank you Charity Elise for allowing your fabulous Voltaire Quote artwork to be featured today. Please check out her other vibrant prints and sweet ceramics on Etsy.
www.Facebook/ChARiTyEliseDesigns
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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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Don’t Come Crying to Me: How can Pain make us Better Friends?
Sometimes those of us who have had very serious struggles can have some hang ups when it’s time to show compassion to our friends. Not all of us, and not always, but there are those times when our friends or family are facing difficulties and we end up doing or saying the very things we complain about people doing/saying to us when we are in need of support.
Why don’t we know better? Spoonies may even be the worst at this. Has anyone ever said, “I shouldn’t be complaining to you about my little ______.” I have come to believe that this is a problem. If anyone should be hearing out someone’s difficult day of not feeling well or emotionally struggling, don’t you think it should be someone who can empathize with feeling crummy? Yes, even if it’s a cold!
We who have gone through our daily battles, we who have lived in survival mode on and off for so long, and then when a loved one falls into his/her own valley: shouldn’t we be the best people for the job of lending an ear? But in stead, we listen to that little voice that says, “Are they kidding me with this?” Or, we try to give them our sage advice to protect them from what is coming. We may know some of what they are facing, but we aren’t them. They have a unique struggle, isolated from ours. Their pain, however similar or maybe seemingly less than ours, is relative to their own experiences in life. A struggle or illness that is tearing someone’s world apart, however lower on the pain scale we believe it is- still is shattering his/her life into pieces in ways we may never understand, and in ways we may never face. (see Proportional Pain and My Guilty Genes)
After surviving so many challenges, we often view others’ battles through the lenses of our own lives. Sometimes we go further than relating and into the realm of “been there lived that, bought a T-shirt.” Remember how, “I COMPLETELY understand” feels when someone says it to you on a bad day? It can feel even more isolating.
But we often do understand so many challenges because we have walked such a painful road of our own. We want to make sure our friends know they are not alone. We can be close by emotionally, available, and most of all: COMPASSIONATE. We don’t need to remind them how much pain we also have felt, or how many times we have been in their shoes. We don’t need to compare horror stories or solve their problems every time they have an issue we believe we can solve. Compassion is the language that tells your loved one that they are not walking their harsh road alone.
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I have to confess that this was written in response to a few of my own very dear loved ones recently facing some challenges. I fear I am guilty of failing them in all of the above ways in attempts to “help” when I should be the one person who knows how to handle their pain and grief, shouldn’t I? However, they have been teaching, growing experiences that I am thankful for. In the beginning years of my illness, I used to get secretly annoyed with people for even talking about their allergies in my presence. But now, I want to be the person people come to for comfort. I pray I can continue learning to be a humble, caring, compassionate friend for those I love so much.
“If pain doesn’t lead to humility, you have wasted your suffering.”
-Katerina S. Klemer
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Passengers by Elle Moss
Thank you to Elle Moss Conceptual Fine Art Photography
Please go purchase one of her lovely original prints for your home or gifts. She has so many whimsical, seasonal and Autumn images to choose from.
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Love Yourself Hard
Get ready to be inspired. (Grab a tissue). Had to re-blog this:
My darling friend (codename Salarcon) is consistently more joyful than many of us put together. She has her struggles, as do all of us, but she has an incredible peace in the midst of those struggles, as do few of us.
She is also a Poetry Slam Goddess and host of a new YouTube poetry program, and her recent poem (below) is about joy — whatever the circumstances.
Life is short, my friends. Whether you are concerned about your orientation or you child’s, or falsely afraid that God does not love you or approve of you, or afraid you somehow do not deserve to be at the table with everyone else, please. You don’t have to do that to yourself.
It’s time to love yourself… hard.
Enjoy Salarcon’s poem… ❤
“I’ve got sunshine on a cloudy day
Whether it’s cold outside I’ve got the month of…”
May 3rd
Amanda dances…
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In Her Shoes: poem
Stiletto Memory
~In Her Shoes~
She asked me in a nice voice if I would wear her shoes.
It wasn’t the best choice, but how could I refuse?
~
The moment they slipped on, I swear I heard a crack.
Then something within me sharply turned to black.
~
The shoes no longer held me up as I fell to my knees.
I could not bear the weight of my dear friend’s disease.
~
She got down on the floor with me and held me for a while.
She put the shoes back on her feet and then she forced a smile.
~
I don’t know how she wears those shoes!
She must have so much strength.
I’ll never understand; I wish I could help her bear the weight.
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This was written in honor of all of the women who live with invisible illnesses and invisible pain. May they have friends who try to understand what they face.
Invisible Illness Awareness Week 2014
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Poem featured on The #Spoonie Daily E-Magazine
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Leg Warmers + Dyslexia = All Gain
“No Pain, No Gain” -Jane Fonda. My sister and I were Jane’s leg warmer partners in crime and side cramps. My sister’s journey with Dyslexia told a different story about pain and gaining.
As my mother would begin Jane Fonda’s warm up on the VHS, my sister and I would be changing into our bathing suits over tights, scrunching up Dad’s long socks (they came up taller and on us looked like those leg warmers worn on the video- we thought). We would get into mom’s blue eye shadow until it was more like forehead shadow. Our hair in HIGH side pony tails mimicking our favorite backup Fonda “fly girls,” we were finally ready to show these ladies how it’s done!
This was so common in our home that we wore out the Jane Fonda video tape. My mother always laughs at this memory of us, yet my sister and I take our Jane Fonda VERY seriously- so no laughing people! We were little girls then, but Fonda and her hotshot posse’ of long-legged sweat band sporting 80’s workout divas made tiny me and my little sissy feel extra fierce.
Jane Fonda
Years later in school, my sweet little sister would not be feeling so fierce any more when she was the target of bullies. They called her: illiterate, moron, idiot, retarded, and more names I know she has buried deep and hopes to forget. She has a learning disability called Dyslexia. She is severely Dyslexic and she didn’t really catch onto reading until around the sixth grade. She thought reading would be her ticket to being “normal” and making friends. The better she could learn to read, the fewer panic attacks she would have when teachers would make her read aloud in front of class “for her own good.” And fewer tears she would cry because of nasty name-calling jerk wads.
She went through a whole lot of emotional pain on the playground, pain when she got any tests back, and pain in her bedroom alone after school- yes, she had pain… But my sister would tell you her GAIN had nothing to do with her pain. Her gain came from her time in drama class. She gained motivation to stay in school through High School performing arts programs. She gained trust back with her peers when she sang in the chorus. She gained confidence in herself when she was the lead in the school play. She gained independence when she put herself through college by winning talent competitions in scholarship pageants. She has represented organizations like Reading for the Blind and Dyslexic along with advocating for school arts programs as both made such an impact for her. And yes, in case you are wondering, the shy little girl who couldn’t read did graduate college. Boom shaka lacka. Hip roll Fonda!
She continues making gains every time she reads a word and each day she goes to work. She makes gains by proving her former teachers wrong, those bullies, those mean snotty classmates, tutors, and everyone who must have been so dumbstruck by her sparkle that they all acted like fools around her, I suppose.
It wasn’t in all the hardship that my lil’ sis found her fabulosity, it was in the moments like dancing in front of the television to Jane Fonda’s Workout video. Fonda fly girls for life xx.
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This entry was in response to a Daily Prompt from WordPress’ Blogging site:
Do you agree with Jane Fonda’s favorite exercise motto, “no pain, no gain?”
http://dailypost.wordpress.com/dp_prompt/pains-and-gains/
www.whotalking.com for photo
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How Robin Williams saved Superman
In 2004 I read Christopher Reeve’s autobiography, Still Me. I had recently been diagnosed with a neurological condition which was quickly crippling me at 22. And Superman had just died.
I didn’t so much read the book as I did listen to it on audio book. Christopher Reeve’s voice filled my car as he read his own words. I still remember how his breathing machine sounded as he gasped for air while still comforting me with his powerful life’s message of hope, courage and perseverance.
While Christopher Reeve’s autobiography is one of the most inspiring and memorable books I have ever read, this story is about Robin Williams and their friendship.
After the dashing hero’s tragic accident, he was in the hospital for months. He underwent a series of surgeries and it was clear he would never regain feeling or movement below his neck. In the days after, Reeve had lost all hope, yet he could not even take his own life, had he tried.
Superman’s best friend was a fuzzy little curly-haired man with sparkling blue eyes and enough energy to light up Manhattan. Robin Williams and Christopher Reeve had met long before either of them were recognizable. They were roommates in college at Julliard and remained best friends thereafter, supporting each other’s acting careers and their families spent time together.
Robin Williams appeared in Reeve’s hospital room, fully dressed in scrubs and a face mask, speaking in a Russian accent. “Time for your rectal exam!” Williams exclaimed. He spent the day visiting with Reeve and helping his friend regain the much-needed light he had lost.
In his book, Christopher Reeve wrote, “For the first time since the accident, I laughed. My old friend had helped me know that somehow I was going to be okay.”
Reeve and his wife went on to change the face of spinal cord injuries along with the perception and treatment of paralysis through the Christopher and Dana Reeve Foundation. Robin Williams became involved in Reeve’s foundation, and they continued encouraging each other over the years. Williams took a greater role in the foundation after Reeve and his wife passed…what a great friend.
Ever since reading Reeve’s autobiography, whenever I would see Robin Williams, I thought: he may have saved his best friend’s life. And without that friend to penetrate the darkness and shine a light on the hope he could not grasp on his own, Reeve may have never started the foundation which has been a beacon for so many individuals. We all know Robin Williams for his abundance of sensational talents. However, I think I can take liberty in saying that those who he loved knew the kind of friend he was and the legacy of love he will leave behind with them.
My first entry is dedicated to Robin Williams and to friends who lift each other up out of dark places.
aBodyofHope 