Category Archives: Inspiration
If you’ve been glued to your couch or imprisoned in your bed because of chronic disease or intractable pain…then you may feel trapped, hopeless, even useless. Are you getting tired of staring at the same 4 walls and know that you’ve been made for more?
Whatever you’re feeling right now, your feelings are completely valid given everything you’re going through. Whether you’re feeling depressed or hopeless, frustrated at doctors, even angry at God, all of those feelings are understandable and very difficult emotions to process.
You’ve lost so much in the battle with your health. It’s okay to grieve over your life, and grieve the loss of your health. You built a good life, and the threat of physical invasion is more mentally overwhelming than anyone around you could possibly realize. You didn’t choose this battle, but you’re in it nonetheless.
It’s important to give yourself permission to mourn the things you’re losing. That’s what people mean when they say “be kind to yourself” or “give yourself a break.” Self compassion isn’t the same as self pity. In fact, self loathing begins to dissipate when self compassion enters the picture. If you would show love and tenderness to your daughter or grandmother in your situation, then do the same for yourself. You’re worthy of that care. Dig deep and find understanding and patience for yourself (even if other people around you haven’t).
When we say chronic illness is a “battle,” that’s part of it. Being a warrior is choosing to treat your body with patience instead of anger- even though you may not feel your body deserves your understanding for how it has betrayed you. Being a warrior is giving yourself dignity simply because you’re human, and worthy of it no matter your health or ability status. Being a warrior is staying in this game of life, even when leaving feels like your only option. Of course, battling chronic illness refers to the rigors of healthcare and living through the “hell” in health, but it also refers to giving understanding to the people who don’t understand us in return.
Then, consider finding something constructive to do from exactly where you are. Whether that’s offering to moderate in your favorite online support group, or taking a free web course for something enjoyable (see Domestika.org), getting involved in a weekly Bible study online with a friend (see YouVersion app plans), an online book club over zoom, or getting into a new hobby that you can do laying down.
I know your brain is pushing back with all the reasons you can’t do it, and may already be making you feel that it’s a pointless cause, etc. That’s the same part of your brain that likes to tell you that you’re lazy, and says that no one actually cares about you– it’s just not true, my friend. You’re not lazy, you’re ill. People do care, but they may not know exactly what you need right now. That ugly little gremlin in our brains is a straight up liar.
Just find one new thing, and try it out temporarily. You don’t know where it will lead, who it will impact, and how one small change will help you in the long run.
Your job never defined you in the first place. You are still you and you are still on your journey ❤
You are loved. You are not alone. Please take good care of yourself,
Join us at the disabled art share group Chronically Inspired on Facebook where we share our adapted projects, and encourage each other to get back into doing the things we once loved.
Did you know that being positive isn’t necessarily the same as being optimistic? Did you know that your methods for coping with stress might be hurting your health, even if they make you feel better?
There was an entire revolution in psychological treatment called “Positive Psychology” which began after the book Learned Optimism changed everything in the 90’s. Before that, psychological practices were geared toward treating severe functional mental illnesses.
The author of the breakthrough book, Martin Seligman, asked the question, why aren’t people fulfilled and thriving when we know more about human behavior than ever before?
Because he challenged the field of behavioral sciences, an entire branch of psychology became dedicated to helping (otherwise normally functioning) people become their best selves.
In his book, Learned Optimism, he discusses the surprising spike in depression, anxiety, suicide, and drug addiction when we live in a happiness-driven society. He believes it is much more than simply public awareness of mental health driving the rise in diagnoses.
In his book, he explains that children were once taught how to overcome obstacles, how to cope and persevere, however the focus in education has instead shifted to boosting self-confidence regardless of effort. Seligman theorized that the self esteem movement, which was standardized in classrooms around the country during the 80’s and 90’s, played a major role in changing the way early childhood minds develop and learn coping strategies.
One point that I found particularly interesting is that he proposes individuals of prior generations (Boomers and earlier) were raised to believe they were surrounded by an invisible support system.
Today, that sense of strong community doesn’t exist for most young people.
In the past, there was a sense that one’s support system shared responsibility for every success and failure. This support system contributed to the overall person that one became. Since there was an awareness that outside forces had a hand in their lives, when their hard work did pay off, they were happy to share their triumphs and celebrate with their circle of support. Likewise, when their attempts failed, they wouldn’t fall too far or stay down too long as they had a safety net ready to pick them up and get them back on their feet. Just as the successes were shared, the devastation of each loss fell not only on one person’s shoulders, but they shared it with their community.
In the past, community looked quite different than our version today. For most people, that community consists of acquaintances we selectively share information and photos with on social media. The community of today may give approval, encouragement or compassion, but is often lacking in deep supportive relationships and the accountability that Seligman discusses.
Americans once valued country, faith in government, religion, family, patriotism, even the President. People were raised connected to a personal faith in God; organized religion provided another strong support structure of people they viewed as their second family. They were inclined to make life long connections inside of their schools and residential areas where they were urged to be active citizens. Above all, the nuclear family was once the cornerstone of society.
Just the sheer idea that others believe in you can be the difference between a devastating pitfall that derails your life and a curve ball which you can bounce back from. Today, most don’t grow up ingrained with the same surrounding support system, lasting personal connections, or strong faith in God and country.
To clarify, I would personally never want to go back to those days, but learning about these changes in our community structure helped me understand how we see the world so differently, and why we might be developing such vastly different coping and social habits from our parents and grandparents.
We are independent. Our successes are our own to take pride in and celebrate. Most learn to have faith and rely only on themselves. There is great emphasis on self-determination, therefore we reap our own rewards when we succeed. But on the downside, our tools for coping with inevitable life failures and day to day stresses may unfortunately be lacking. We are taught that personal responsibility and success are absolutely everything, but when we fail (as we all do), the personal fallout can be emotionally and psychologically devastating…even traumatizing.
I was working on my Learned Optimism piece when I read an article on Resilience, and was surprised to find that the number one quality suggested in becoming more resilient is to create the same types of communal support that past generations grew up with (as Martin Seligman found).
Surrounding yourself with close connections, friends, family members, becoming more connected to faith, plugging into community, and making permanent, lasting relationships with “people who affirm you, recognize your strengths, natural, innate abilities, and provide the support and acceptance you need” will increase your resilience [Mary J. Yerkes].
More ways to become more resilient:
-Accept “good enough” instead of expecting perfection
-Focus on the things you can control and let go of the things you can’t
-Find deeper meaning in life
-Accept advice from your loved ones and those who know you best
-Take care of yourself
-Ask for/accept help
-Don’t be surprised when life changes suddenly
-Have faith that things will eventually get better
-Set goals you can achieve
Being resilient isn’t about silencing yourself through turmoil or ignoring your emotions, but resiliency is a method of utilizing multiple positive coping strategies along with a mindset that is always ready to “roll with the punches.”
Martin Seligman writes, “If we habitually believe, as does the pessimist, that failure is our fault, it will undermine everything we do.”
Pessimists feel personally responsible in all success and failure, and helpless to make changes. This thinking leads to tendencies for depression and anxiety. Chronic pessimists are also more likely to have health troubles later in life, according to research in behavioral science.
Does this mean that society’s focus on self-reliance and self esteem could be creating generations of pessimists? I don’t know if that’s true, but it would be very ironic in our happiness-driven, positivity-focused culture.
The good news is, both Resilience and Optimism can be learned!
The title of this article should actually say that Claire Wineland was a “Life Advocate.” She was the epitome of MLK’s quote, “It doesn’t matter how long you live, but how well you do it.”
I didn’t know Claire personally, but like so many of her followers on social media, those who read her book or had the pleasure of attending one of her talks in person, she felt like a friend. She had a talent for drawing people in, then she would reveal her truths to us.
Like a teenage philosopher, the Cystic Fibrosis fighter pondered mortality, how to live boldly in spite of limitations, and the depth of the human spirit from her social media pages and youtube channel. She said that her two favorite hobbies were to think and talk, so she put her best gifts to good use!
“I don’t agree to do these talks to tell you how to have a happy life. Life is hard. It’s painful. You can suffer. You can experience what it’s like to be a human being with all of the messy gross emotions that come with it, and still make a life that you are very very proud of.”
Sometimes Claire shared her thought provoking videos from her apartment, or laying in a hospital bed; we once even found her clothed in a hot bathtub!
That was Claire Wineland. She was spunky and full of spirit, never ceasing to surprise or defy expectations!
When she spoke, her wisdom and maturity made you forget that she was only in her late teens– just coming into her early 20’s.
As a young adult, she became a speaker, author, and founder of a non-profit for kids with her condition Cystic Fibrosis called Claire’s Place Foundation. Going on speaking engagements (when she was well enough), afforded her opportunities to see more of the world, to travel, to make friends, stay in hotels instead of hospitals, and gave her new life experiences which she cherished.
Through her professionalism in health activism and being in the public eye, Claire Wineland helped make the work of health advocacy a more respected job title.
She took a strong stance on addressing the way the world infantalizes young people living with illness, something she understood all too well growing up with CF.
She was a rare soul as much as her perspective on life was unique. At times controversial, Claire shared that happiness itself wasn’t the key to life. Instead, she maintained that living out our purpose through service is where we find deeper meaning.
In one of her last videos, Claire spoke passionately about her charity she created she referred to as her “baby”. She spoke on the undenianble worth she believed everyone has regardless of limitations. This had been her battlecry throughout her career, which made her beloved to people living with disabilities of all types.
Her comments section always exploded with thoughtful discussions, as she had a way of eliciting meaningful conversations. People would engage one another on life, death, happiness, and pondering the true meaning of existence.
Claire’s following consists of terminally ill individuals, healthy young people, adults, Cystic Fibrosis fighters, and people with long term chronic diseases like myself. (Even celebrities from Bernie Sanders to Anne Hathaway are part of Claire’s fan club.) You can imagine the conversations she sparked, and the perspectives she challenged!
Claire had fought to outlive her life expectancy, and she overcame near-death several times. Because of her experiences, she believed in demystifying mortality, and used her prognosis to wake us up into living our own lives more fruitfully.
In one of the last videos she shared, she plead for support to get a lung transplant- something she once vowed she would never agree to. Though she belly-laughed and joked through her former talks, in this one, her tears flowed. She shared the possibilities and dreams she saw for herself if the transplant was a success. For the first time in her life, she was looking forward to her future. An enormous outpouring of both financial and heartfelt support followed from her fans.
More than enough funding was donated to cover costs of her medical care. A video of Claire’s genuine appreciation followed in return. She expressed her humility and surprise that so many contributed and reached out to encourage her. The overflow of funds were given to Claire’s Cystic Fibrosis Foundation.
Because of her online friends, Claire went into her surgery overjoyed with hope, gratitude, and feeling love from hundreds of thousands worldwide.
The people she had inspired and imparted her wisdom to for years were able to send her off to her surgery with well wishes and a flooding of encouragement.
She is said to have suffered a stroke on September 2, 2018. Claire was put into a medically induced coma, and taken off of life support one week post-operation. Her parents say she passed peacefully.
She was 21 years old.
Sincere condolences to the Wineland family. As a long time chronic illness sufferer, Claire touched my life and heart as she did for so many others.
I leave you with my favorite video of Claire’s, one of her most powerful TedX talks. I hope you will watch and share her message… In loving memory of Claire.
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 🙂
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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Are you in a heat wave? It seems the entire country is encountering record high’s this week. Our AC has been pushing so hard that it shut down! It got ugly in here, but thankfully, it wasn’t out for long.
Just the short spell of overheating, and increased pain gave me a better appreciation for the privilege of air conditioning. Things which are so commonplace to us in this part of the world, are luxuries to others who don’t have the same amenities.
That’s something I’ve been considering more and more in regard to health.
Not that we should compare ourselves to anyone else, but it can be valuable to approach your life from a different lens now and then.
So, I share my own perspectives with you in the hope it encourages you in your life as so many of you have encouraged me.
So many are dying globally from diseases that can be managed, even treated successfully. I can’t even imagine living the life I’ve been handed in an area where water is miles away, let alone a doctor. But there are children, teens, women, and men who do these same battles each day armed with so much less.
It breaks my heart to think about how people go on living in the same unimaginable pain, and try to accept these very same conditions without the hope of treatment so many of us have here. But, I imagine their lives aren’t built around doctors, medications, and treatments, but instead, seeking to find more meaning behind the curtain of life.
In my reality, it’s easy to fall into depression over the people and life opportunities that I’ve lost in the wake of illness.
Grief is an important part of processing major life changes. There’s nothing wrong with sadness and sorrow. Self loathing and hating my life, however would be.
Still, I struggle with feelings of hopelessness, as is common for all of us fighting chronic pain and rare diseases. As if our bodies aren’t suffering enough, we can suffer just as much in mind and spirit.
I suppose that’s why the mission of seeking out hope is so meaningful to me. I know we don’t always have the strength to find hope for ourselves; our lives at times appear devoid of all light. That’s why I wanted this to be a place anyone could reach out and find it when needed.
A short online course on the history of disability last month had quite an impact on me. Individuals from India, Japan, China, Africa, Australia and the UK shared their personal experiences living with various impairments.
Around the world, people like myself are viewed as cursed, and are disowned by society. Many believe their conditions were brought on by sins from their past lives, or they believe they are being punished for wrongs done by their ancestors. In many parts of the world, society sees disability as contagious- even demonic. It’s not uncommon for disabled children to live on the street, or to be “put away” in facilities for life. We have a shameful history of treating our disabled brethren in a less than dignified manner here in the states as well.
I think of my own faith and how it has shaped my experience through this journey. Jesus was never afraid of being seen around sickness, disability, poverty, or with the people who had been most marginalized. He put a spotlight on the parts of society which had been ignored. He didn’t run away, He ran toward people who were suffering.
I’m not the young woman I was 13 years ago- I’ve been changed by this journey.
There’s always a new version of us that emerges from the flames of adversity; we have to get to know ourselves again and what each new chapter of life will bring next.
I know having multiple rare diseases isn’t a life anyone anywhere would wish for.
Yet, this is my one life, and I’m tasked with finding a way to make the most of the days I have. That challenge to myself can seem impossible, but I’ve become convinced that the fight is worth it. My life is worth fighting for.
And so is yours.
Below is more information about our disabled brothers and sisters around the globe.
-Today in the United States, chronic pain patients are often denied treatment, especially if their condition responds best to opioid pain medication.
-In Japan, women were forced to terminate their pregnancies if the baby was found to have an abnormality. (This law was abolished as recently as 1995.)
-In China, disabled individuals are depicted on tv like side shows which doesn’t translate easily for disabled individuals living in society.
- 70 million people need a wheelchair, but only 10% have access to one
- 360 million people have significant hearing loss, but less than 10% of people who need hearing aids have access to them.
- 93 million children worldwide have moderate or severe disability
Mental Illnesses are on the rise worldwide.
- Depression: 300 million people
- Bipolar affective disorder: 60 million
- Schizophrenia & other psychotic disorders: 21 million
Chronic Illness has become a worldwide epidemic.
- 300 million people live with Rare Diseases (1/2 are children).
- Chronic Pain effects 1.5 Billion people around the world.
- It’s estimated that 60% of the world’s population has at least one chronic illness (highest percentages in developing countries).
If you’ve been hit hard by suicides in the news this week, you are not alone. It’s crushing to learn that these two incredible artists have chosen to end their lives.
Together you can create a plan to help you get on a path BACK TO YOURSELF.
*Your life is worth fighting for.
If you know someone going through a bad breakup, someone grieving a loss, someone who lives with mental illness, or someone going through a new or ongoing health crisis, share this image with them to save on their phone or computer.
If you’re going through a tough season and *need* to ask for help, I pray you have the courage to do so, and a compassionate soul who will answer that call.
Sometimes what we need wins over what we want. Our pride never wants to concede in that battle of wills.
There’s no shame or guilt in doing the right thing for your survival. Don’t let those ugly whispers (of guilt or shame) predict how you should live ♡
If you are struggling today, please call your State Behavioral Health Crisis Line. They are professionals and are trained to listen.
What are your basics?
If you made a list, what would be on it?
What helps you feel like a human being again?
Maybe you like to brush your hair, or maybe drinking coffee in the morning does the trick. Some people must first put on lipstick, and for others, it’s saying hello to their furry friends that begins to restore their equalibrium.
-Take your Pills
-Brush your Teeth
-Move your body/Stretch
-Read something inspiring
-Call/contact a loved one
-Pray, Rest, Meditate
-Do something fun/hobby
You’ll notice, I didn’t add “Eat something healthy” because sometimes the best we can do is eat anything at all. After you have fed your stomach, hydrated thoroughly, and you’ve taken your meds and/or vitamins, make sure to feed your soul.
Feeding my soul is just as nourishing as feeding my body. If all I set my eyes and heart on is social media and television for a week, I can’t be surprised if I’m feeling nervous and low by the end of the week. I love the term “Inspirationalizing” as an active verb. We have to go out of our way to find uplifting articles for hope, books and quotes by our role models for wisdom, seeking out words of wisdom from your faith for guidance.
What ways do you like to feed your soul?
Since my divorce, I have overhauled my self care. In a relationship, you each have a schedule and you’re attuned to the other person’s needs. They know you, and are able to remind you of your needs- you lean on one another, and develop patterns. These habits and patterns had become engrained over 15 years. But patterns can be changed- and self care is a pattern that we all have to develop.
As I continue adjusting to my single life, in time, I’ve learned to check in with myself with as much effort as I would have my spouse. Having a schedule of sorts helps, and prioritising is especially important for me. In the beginning, the transition was especially difficult. It took time. If you are facing a transition, give yourself time… Things will find their place again. Please don’t neglect your well being in the mean time.
Whichever self care step you’re struggling with, find a way to make it easier on you to accomplish. For instance, if washing your hair has become your arch nemesis, then get creative. Maybe it’s due to chronic pain in your arm, or a slow healing back surgery. In that case, keep a bottle of no-rinse shampoo handy. Keep it with you at all times so you can do your hair washing at the times you feel able.
Similarly, if it’s tooth brushing that you can’t seem to fit in twice each day, know that you’re not alone and don’t be ashamed. Get creative.
There are plenty of solutions to make your personal care work for your special needs and your unique schedule.
What are some goals you have on your self care list?
What self care would you like to set as a priority for yourself this year?
If you like someone to boss you into positive thinking, this affirmation list is the perfect place for you. Welcome! By the way, that was your first affirmation. I’m charging you per happy thought- they don’t come cheap these days, you know? If this makes you smile, that’s double. Technically, it’s not exactly a mantra, but it still counts as positivity. I didn’t make up the rules! If you don’t like it, take it up with the Bureau for Good Vibes. They are monsters when it comes to positive thinking. Just try to have a single doubt in their presence, and security will escort you straight out of the building. Those people sound laid back and relaxed, but that’s just what they want you to think. The truth? Two words: Illumi Nati.
In an attempt to get on their good side, I’ve bribed them with a vintage set of Bob Ross, The Joy of Painting VHS tapes. I’m crossing my fingers that Bob’s “happy little trees” and positive vibe-spraying hair will get me some good karma with the underground happy committee. So I’m sweetening the pot with this affirmation list.
All kidding aside, below is a mix of uplifting words, and useful reminders for you and any friend who might need a pick-me-up. I like to tack encouraging messages for myself up on my wall as a simple way to keep focused on bright spots in my life. (Especially when that darn happiness bureau is out there😉).
- Your butt is the perfect size.
- You give good Facebook.
- Repeat after me: “It’s ok if the house is messy.”
- You folded the socks today- good job! You deserve a cookie.
- You are enough- as you are.
- You don’t have to be fearless to be brave.
- Try being grateful instead of guilty.
- It won’t be perfect, but it will be epic!
- Don’t forget that you are a stone cold warrior.
- You didn’t swear in front of the kids today! A++
- You changed out of your pj’s! Well done, you.
- Gold star for eating breakfast🌟 You earned yourself another cookie…ok, an oatmeal cookie 😉
- The plants are still alive- that’s the way!
- You paid all your bills on time ✔✔
- You wore a bra today- Killing it!
- A nap is a great idea!!!
- You moisturized? Beast mode.
- Face each day like you have a glue stick in one hand and a jar of glitter in the other.
- Punch today in the face like it’s bullying your kid. (But don’t be seriously punching kids for real though. Weirdo.)
- Take your vitamins, get some sunshine, wash behind your ears, and never forget to DVR Project Runway.
- Stop. Freaking. Out.
- You’ve got this.
- Deep breaths.
- Tomorrow is not for today.
- You are meant to be.
- Your purpose goes beyond the walls of a building.
- God has always loved you, and always will.
- No need to make the bed- what kind of psycho does that anyway?
- In some cultures, tummy rolls are a sign of beauty and prosperity. True story.
- If you wish you had more curves, smile more. Your smile is the best curve on your body.
- Smile. Take selfies. Wear what you want. Be happy in your skin. There are millions of people who would love to look exactly like you right now (including you in about 20 years.)
- You can’t buy happiness, but you can buy chocolate. And that’s pretty close.
- I followed my heart, and it lead me to the fridge.
- I’m learning to be my authentic self…my authentic self believes you should be doing the laundry.
- On an emoji scale from unicorns to poops, make today a unicorn kind of day🦄
- In today’s world, caring about other people is about the most radical thing you can do.
- If your grandma were going through what you are now, what would you want to tell her?
- All of this will be worth it in the end.
According to studies in positive psychology dating back since the 1980’s, the way affirmations work is you must repeat the same phrase to yourself over an extended period. Say the positive affirmation every time you have the compusively negative or harmful thought you’re trying to replace. For example, each time you have a reocurring thought or feeling of loneliness, use the same powerful phrase, quote or prayer to affirm that you are loved. In time, you can actually change your own mind and rewire the way you think! #neuroplasticity
I would love to hear your personal favorite affirmation in the comments section below.
You have every right to feel overwhelmed, as though no one understands. Maybe you feel like a burden, afraid of your future, or even lost of all hope. As far as I know, everyone living with long-term illness understands these feelings well. I know I do.
It doesn’t make it any less horrible to know that 100 million Americans with chronic pain can relate to that feeling, but it may help in some way to remember that your feelings are absolutely normal.
Illness, pain, long-suffering literally deprive the brain of the chemicals and hormones required to feel a general sense of happiness and peace. It’s not pain or illness alone that causes depression, but instead the high levels of physical stress, constantly, over a long period of time which can inhibit the production of important nerve cells. The “optimistic” neurotransmitters like serotonin, oxytocin, and dopamine are no longer in balance to counter feelings like uselnessness, loneliness, fear, and hopelessness.
What might have been a passing thought of fear, thanks to the ongoing imbalance in the body, can become a spiraling pit of despair and feelings of doom. Pain can wriggle into your very soul, and drain you of every resource.
This month is my 13 year anniversary with chronic pain (RSD/CRPS). Then when the condition progressed to stage four with comorbidities 6 years ago, I felt as though I completely disappeared. Illness swallowed me up.
If anyone is reading this and is being swallowed up by sickness, then you know it’s the loneliest feeling in the world to watch everyone go on and move forward with their lives while you fight for your own in the shadows. Being drowned by an invisible adversary can seem like a practical joke. Everyone is in disbelief it could be “that bad.” But truly, aren’t we all in disbelief that it’s this bad?
I want to tell you what your brain would tell you if she were allowed to work at her full potential. I want to share what your soul is crying out for that pain has hacked.
You have a purpose, you always have. Your purpose did not end when you were diagnosed. A calling is not just a job, purpose goes beyond the walls of a building. You are meant to be.
You are enough. You are just as worthy and amazing as you always have been. Even though you might feel weak, you are gaining strength of character, wisdom, and you are learning valuable lessons from this battle that no one can ever take away from you. Please don’t accept the lie that you’re a failure, you are not. You are in the midst of the fight of your life. We can’t allow ourselves to believe we are losing.
If your daughter, son, or grandparent were suffering from the very same condition as you, what would you want to tell them?
You can do this. Though you may be exhausted and fragile right now, and you aren’t even sure how you’ll go on another day, the pain might be pushing you over the edge of what you can bare…but somehow you have risen to meet every single day before this. Remember every sickening treatment, painful surgery, and frustrating doctor appointment. Never forget how many miles you have walked already. You have overcome so many impossible days. Just get through this day. Tomorrow is not for today.
You are beautiful. Sometimes we lose touch with our bodies as protection from all of the horrors we are living through physically. Weight gain or weight loss, hair loss or teeth changes, swelling or skin changes…. we can look in the mirror and see a complete stranger staring back. You may not look or feel as you once did, but you can still get to know this amazing, lovely, and beautiful person. You are worthy of love. (P.S. it’s ok to take selfies even if you don’t look like your old pictures!) People love you for all of you. You don’t have to appear perfect, no one is.
You are still the same person. Illness has a tricky way of detaching us from the longing of our past, splitting us apart from the face in the mirror, and isolating us from people we care for. Who we once were can float away, and illness can feel as though it’s taking us over. You are still her. You are still on your journey. Your path, your life, your experience is no less meaningful than anyone else’s.
One last thing that I think your brain would want to remind you… Things won’t be this way forever. Chronic conditions change over time. Life changes. Our perceptions change. Yes, any day your condition could progress and worsen. Or any day, you could begin to improve or go into remission. The truth is that we hear about progression and complications 10x more (TEN TIMES MORE) than we hear about people regaining health and wellness.
There is no doctor or article online that can assure you what tomorrow will hold. As much as your body and mind whisper terrifying words like “incurable, degenerative, progressive,” it’s easy to let that be your daily mantra, or you can make HOPE become your weapon of choice.
As illness continues to speak its lies to us, we must scream back truth to ourselves so loudly that every part of us can hear!
“The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they may both lead to the same destination.”
-Marion Zimmer Bradley
Thank you to The Mighty for choosing my article for publication.
These are 2 self portraits expressing the neurological and autoimmune disease RSD, also known as Complex Regional Pain Syndrome.
There are those who wonder why those of us confined by pain and illness choose to continue a life suffering when all has been done, and there is not much more to do than to try to make us as comfortable as possible.
Most will never know as much torture as those who live with chronic neurological disease. But to be miserable, to be a victim in your spirit, that you must fight with every effort.
It may take all you have and more, but you are indeed needed in this world. Never, never give up.
Dear friend, never lose faith that your life purpose for being on this earth is so much more powerful than your pain.
I believe in a loving merciful God who lends strength when we get to the end of ours.
I fight to survive, to choose life every day when my body begs the opposite. I want to encourage you today to take on your battle in your own life.
Hugs gentle warrior.
Please share below how you continue to press on despite seemingly insurmountable challenges.