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To Survivors of Depression, Chronic Illness, Mental Illness, & Trauma

*trigger warning*

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.

I don’t doubt that Anthony Bourdain was influenced by the passing of Kate Spade’s suicide just days prior. Kade Spade was influenced by Robin William’s death, according to Kate’s sister. Now, while it’s a common topic of conversation, address these issues with your friends and family so that together we can help end this pattern, spread awareness, shed light on issues that most often stay buried in darkness, and forever stop people from calling suicide “selfish” ever again.
Sharing our prayers and thoughts for their families and loved ones now.

Sometimes life feels impossible to carry on. Sometimes you feel there are NO OTHER logical options. Sometimes suffering is our only reality, and there appears to be no end in sight.

In depression or in suffering, your feelings lie to you until your own inner compass is off course. When your own thoughts and emotions are steering you into a storm, lean on facts as your anchor instead, or the lies of depression and pain can sweep you away.

Facts:
-Things will change even when your mind tells you that nothing will ever be different.
-YOU MATTER, even if your thoughts tell you that you’re worthless right now.
-The world is BETTER OFF because you’re in it .
-Your life has purpose, even if you can’t always clearly see what that meaning is.
-You are lovable.
-You are loving.
-You are an important influence on people’s lives even if that doesn’t feel real to you today.
-You are MEANT TO BE here.

Depression can decieve you until you can’t even trust your own emotions. What might make sense to you one day, can be like the thoughts of a stranger on another day.
Depression isn’t only caused by mental illness, it can be caused by grief, by loss, by chronic pain, by trauma, by changes in your health, by a vitamin deficiency, by evironmental changes, or even small changes in your diet.
It can be a slow spiral, and sometimes you may not realize you’re living with depression until your brain has been lying to you for so long that one day you look around and feel trapped in your own story.
If you believe you might be losing control of your life, and worthlessness is heavy on your shoulders, please make an appointment to talk to your doctor asap.

Together you can create a plan to help you get on a path BACK TO YOURSELF.

*Your life is worth fighting for.

To talk to someone immediately, call your state’s Behavioral Health Department hotline to speak with a professional therapist day or night.

There is always hope, that’s a fact ❤

Self Care Plan

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.

Core Basics:

-Drink Water

-Eat Something

-Take your Pills

-Brush your Teeth

-Wash up

-Change Clothes

Secondary Basics:

-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?

Inspiration, for a bad day with Chronic Pain


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.

A Peace Premonition

God has not given us a spirit of fear...2 Timothy 1:7 "No Fear Campaign 2015" article on God's COMMANDING us not to fear and to have courage in our lives. #courage #nofear #Christian #verses #Bible #fear #inspiration #anxiety #OCD #Spoonie #abodyofhope abodyofhope.wordpress.com

Just over one year ago, I wrote a post which I now believe may have been a premonition. On one of the last days of 2015 I wrote No Fear Campaign, 2015 and I have thought back to that post as well as revisited it so many times throughout this past year.

I was fueled with courage at the beginning of the year, but I had no idea why I would need it. And then the bottom dropped out of my life and I REQUIRED that courage more than ever. I suffered so much loss this year, I made a huge transition, fought a difficult battle, saw several new doctors, visited the hospital, started physical therapy, home care, and have been exposing myself to many new faces, new experiences, and could never have imagined any of this just one year ago. It’s true that this year, I’ve been in constant crisis management. But it’s also true that I’ve been managing my own crisis. That might seem like a given, but illness doesn’t always allow us that luxury.

fierce

Last year, the messages to be courageous seemed to jump out everywhere: Have no fear, do not fear, I am with you, be not afraid. If God wants you to hear a message, you will see it constantly whether it is on Facebook or Twitter or television or out of your home or in your Bible- if you feel like there is something that keeps popping up in front of you repeatedly, that message is JUST FOR YOU! Truth finds you. You can try to ignore it, but if God wants a message in front of you, He will repeat it and confirm it. It’s not a coincidence. And I am so thankful I grasped the message to have courage when I did. It truly saved my life this year and courage continues to change how I move forward.

Things are so hard now, SO HARD. But I’m planning to beat fear once again, and go to my sister’s wedding… in 7 days. This is possibly one of the scariest things I have ever attempted. And yes, I am afraid. As it comes closer, all of those I CAN’T thoughts are terrifying at times.

These posters were made around the end of last year. Around the same time that I wrote No Fear Campaign, I wrote a few other, fearless-themed posts. In one piece, I said: “The strength comes for the step you need it, not days or months ahead.” That is what I am counting on for this wedding adventure. And it helps give me peace that God will strengthen me and my body to do what needs to be done when the time comes, for my sister, and for me.

Whatever trials wait for you tomorrow, and paralyze your heart with worry today, I hope you feel comforted remembering you can call on that added strength and courage at the moment you need it. You aren’t walking your path alone.

~Peace be with you~

“Freedom lies in being bold.”
Robert Frost

The Liar Inside

Portrait by Hypnotic Teapot, Etsy

Hypnotic Teapot Portrait Artist

~The Liar Inside~

There is this voice. It whispers. (It screams.)

It tells you that you have fallen too far.

There is no returning from these hits.

It tells you that someone else would have handled this path better.

Braver. Tougher. Smarter.

Someone else would not have lost so much. Someone else would not have allowed themselves to fall…this far. 

She tells you that you are a burden. A vampire.

Selfish. Helpless. Unworthy.

She tells you that if you disappeared…no one would grieve for you. 

She has a voice and she has eyes. She shows you how others might see you: Pathetic. Weak. Alone. 

This voice is a liar. 

She lives in the home of everyone. 

She sneaks in through the window of your mother and father. 

She sings you hateful songs about others. She sings you hurtful songs about yourself. 

Satan is an angel. Nickname: “the great deceiver.” 

Silence her deception with love, service, worship, gratitude.

Silence her deception with truth:

You are loved.

You are strong.

You are worthy.

You are made in the image of God.

You are SO unbelievably beautiful! 

You can face this day fiercely and boldly!

And you are not alone. 

~a Body of Hope

*****

 Custom image by Portrait Artist, Hypnotic Teapot on Etsy. She creates stunning, unique color and pencil portraits Hypnotic Teapot Portrait Artistof you, your friends, and your pets at an affordable price. I have ordered custom artwork from her and can vouch for her professionalism and amazing artistry. Go buy a gift your loved one will never forget! #ValentinesDay

“A Lonely Life” by Mary Jane Gonzales

I’m honored to share this from poet, writer, author Mary Jane Gonzales’s new blog: MyInvisibleLife.net

Once upon a time, in my real life, I had lots and lots of friends. Despite being handicapped, life was full. Even when handicaps grew to the point of disabilities and everything was more of a challenge, there was still an abundance of events to attend and activities to do.

But over the years, an alternate life set in. And, strange as it seems, there were levels leading up to that point. Starting off normal, becoming handicapped, becoming disabled, becoming homebound, then becoming bedbound. Though I’m very grateful this alternate life occurred over time, rather than all at once, the fact remains it takes a lot of adjusting. And, in that journey, you’re very much alone. No-one is walking in your shoes – and, even those walking alongside you, who likewise grieve your loss, cannot relate to what you experience. And, sadly, the not understanding often leads to abandonment. Not that it’s intentional, but we live in a microwave society that expects quick results. They can’t comprehend (or tolerate) unresolved issues. Chronic pain or lingering illness is unfathomable to most; and would be to us if we weren’t living it. And loss of health is not the only reason for them (or us) to retreat.

Other reasons could be depression that accompanies chronic illness, maybe making us less positive, not seeing the glass half full as much as we had before. Or us not calling them as much as before because there’s nothing new or good to report. Unfortunately, that can be translated to them as a loss of interest. And them not calling us anymore feels like rejection or abandonment. So, for me and countless others, the new reality is lacking someone to visit us or someone to call for a favor. Instead, there’s a host of virtual friends who truly understand what you’re going through and may become treasured friends. Yet, the loss of longtime friendships is painful and the loss of visitors is lonely. I know that everyone’s at a different place in life, and some may not be here yet, just as I was not here yet.

But, though it’s taken much time for me to get to this point, I have arrived! Thankfully, I’m very blessed in so many ways. I have my family, my faith and a couple of friends who, though not nearby, love and support me. I keep myself busy with various projects and enjoy life as much as possible considering the circumstance. I can’t deny that an invisible life is a lonely life. Lonely being a relative term, you could be at the beginning stage where you can no longer work and are no longer in the mainstream of life. Or, you could be acclimated to being at home and still be receiving visitors.

Whatever point each of us is at, we need to be able to entertain or occupy ourselves, rather than expecting others to meet that need. So much is learned from chronic illness, with self-discovery being one of them. Though I would not have chosen this life of illness, neither could I have known that good could come from it. Despite the hardship or trauma of disease, in the end, I suspect that most of us have been made better by what we’ve been through.

Find her books here available on BarnesandNoble

Light Forgotten

Living in the dark or with a blindfold on, you get used to your surroundings in time. You get used to the way things feel. Your water bottle is always in its place, and you know where to reach your hand to find it. You know each medication by the sound and weight of the pills inside. You get accustomed to the absence of your reflection, because mirrors don’t have a purpose in the dark.

Your fingertips know the feeling of every surface. Your body learns which pieces of furniture are weight-bearing and which give in if you fall into them.

In due time, everything has a place in your dark room. You start to trust yourself in the blackness. The dark is so comfortable, you start to forget what things look like in the full light of day.

This is how living with Depression is. After a while, you almost acclimate to it. Unbearable darkness moves into a cloudy dim that you tell yourself is normal. You start to forget who you once were and how to get back to that person again. You say and do all the things you believe you should do- but the reason you are doing them isn’t clear to you any more. You know this world so intimately that you almost forget there is another way to feel.

Hypersensitive to artificial light- to those who talk about JUST “being positive” or “how to be happy” cause you to cover your eyes in pain. These are the things that remind you how intense it has become.

Someone who loves you opens a window a crack. Just enough to let real sunshine and fresh air in. You catch a glimpse of yourself in the mirror for the first time in…too long. You didn’t even realize the dark had become such a companion to you. Now you see the room with a bit of light cast over it. Your comfortable, perfectly laid out room with all of your things at your knowing fingertips: you finally see…a cluttered dusty mess with dangerous obstacles everywhere.

Going back to the dark isn’t comfortable any more. All you want to do now is paw along the wall searching for that window.

A Positive Message for your Lying Brain

Original art by Jezabel Rodrigo Yusta: "Negative self talk and making room for your true beauty" article #spoonie #depression #inspiration

Original art by Jezabel Rodrigo Yusta

“You are going to feel this way forever,” “you are only going to get worse,” ” you will never be able to do that,” “you are a burden.”
Who would say such horrible things to you? I’m guessing you do.

They begin as whispers in the back of our minds and they fester and shout for so long, we begin to accept them as our self-truths. But they are NOT truths, they are only our fears and our doubts. ONLY? Yes, they are not reality.

Depression, chronic pain, chronic illness, trauma, long periods of high stress: Leech out the positive chemicals from your brain and body. Those chemicals are responsible for the good thoughts and feelings which help balance our problems and our negative thoughts. Remember feeling like you used to be such a positive, upbeat person? It isn’t your fault that your mind is different. Your body chemistry and brain wiring is altered by your changing health. Your brain is no longer combating destructive whispers and banishing horrible images of yourself. It means you are filled with LIES. Your brain is sneaky lying liar who deceives you more than ever…so don’t believe her sales pitches!

After a while, the whispers turn to shouts and we begin to believe these negative messages like: No one cares, I am weak, I’m not good enough, etc. You would never say these things to a suffering loved one in pain, so why do you replay these messages over and over to yourself? It becomes habit. These lies take on a life of their own and before we know it, they make us feel powerless, hopeless, ashamed, guilty, and alone.

But we are not powerless! We can take control over our thoughts and change the tape that has been endlessly running. You can help restore balance to the stream of lies that have been on blast.

Replace the negative messages with positive mantras that are TRUE! No one deserves to be bullied constantly. Why not try showing yourself the same compassion you show others?  You could really use it right about now…

Become self-aware. Scout out the lies. Take them down!

When you realize you are tossing yourself a negative message, say “STOP” like snapping a rubber band on your wrist. Replace those lies with something positive and true, such as: “My life is a gift,” “I will do my best today,” “I am thankful for the love in my life.” 

Just as you now believe the negative self–talk which were once only tiny whispers, new positives can become your reality instead. Sometimes people say, “I choose happiness.” But it isn’t actually that easy. Seeking out gratitude is possible, however. And gratitude ushers more and more joy into our lives

My mantra for today: “I am a child of the Creator. Forgiven all things by His son. I am perfectly and wonderfully made, and there is no room in here for my negative noise while the Holy Spirit is trying to speak!”

Please share your positive mantras in comments. Blessings on your journey.

*

“We ask ourselves, ‘Who am I to be brilliant, gorgeous, talented, fabulous?’ Actually, who are you NOT to be? You are a child of God. Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you. We are all meant to shine, as children do. We were born to make manifest the glory of God that is within us. It’s not just in some of us; it’s in everyone. And as we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others.” -Marianne Williamson 

Original art by Jezabel Rodrigo Yusta: "Negative self talk and making room for your true beauty" article #spoonie #depression #inspiration

Inspirational artwork by Jezabel Rodrigo Yusta. See more original images of the artist’s here.

Fanny Crosby: This is my Story, This is my Song

Fanny Crosby: This is My Story This is My Song article #biography #inspiration #blind #poet #hymn #quote #Spoonie #chronicillness #depression #Christian

Fanny Crosby

If you have ever been to a church where they still sing occasional hymns, then your heart has been uplifted by the works of Fanny Crosby. She was a blind woman, an activist, a writer, poet, teacher, humanitarian, and possibly, a chronic illness and depression survivor. Even though she made history by writing nearly 10,000 hymns- more praise songs than any other person, many don’t know the story behind this incredible woman and survivor.

Shortly after her birth in 1820, fever from a common cold caused swelling in Fanny’s eyes. The treatment the doctors used trying to bring down the swelling caused permanent, irreversible blindness. Fanny never resented that doctor, and later, wrote a poem about her blindness being her gift.

Growing up, Fanny was a spirited happy child, despite living in darkness. Her family had roots in the Puritan religion and her grandmother put an emphasis on her Bible education. Young Fanny took an interest in music and creative writing, and she wrote her first poem at age 8. You can already see her early knack for rhyme and rhythm:

Oh what a happy soul I am!

Although I cannot see,

I am resolved that in this world

Contented I will be.

How many blessings I enjoy

That other people don’t!

To weep and sigh because I’m blind,

I cannot, and I won’t!

After she graduated college, Fanny spoke at multiple campaigns to raise awareness for blindness education, she was a speaker in front of Congress for political legislation, and she even befriended Grover Cleveland! Even though she had gained popularity in her political writing, was a noted speaker, and was becoming a recognized poet (lovingly called “the blind poet”), in time, she said that she felt an emptiness in this work. This is when Fanny Crosby began focusing more on her spiritual path and writing hymns and praise poems which have touched so many hearts.

She shifted her focus to helping others as she sought a more meaningful life serving the Lord. Just like when she was younger and volunteered teaching blind prison inmates, Fanny set out to help at homeless shelters and was a regular patron at missions all over New York City. Her heart was with those less fortunate; she gained a new type of prominence among a different class of people for being a compassionate, caring soul during a harsh time in America. When Cholera broke out in New York City, she turned her focus to caring for the sick and worked tirelessly at the hospital near her home in Brooklyn. She was very passionate about this effort and many of her songs are inspired by this period in her life.

Fanny and her husband had one child, a daughter, who tragically died in infancy from Typhoid Fever. One of her most popular hymns, Safe in the Arms of Jesus was written just after the passing of her daughter:

Safe in the arms of Jesus,

  Safe on His gentle breast,

There by His love o’ershaded,

    Sweetly my soul doth rest.

After losing their only child, her husband became a recluse. Fanny began spending most of her time in the church and wrote the majority of her hymns and Christian poems with her minister and often, her co-writer. Over and over, there are records of Fanny not feeling well, being “depressed,” worn down, and having to take time away for health matters. It seems as though this was a regular occurrence over the course of her career. Saying she had a Chronic Illness or a depressive disorder is just conjecture, but it does appear that she dealt with ongoing health and emotional struggles throughout her life. Nevertheless, she held tight to her faith and was a constant source of inspiration to those in her life. Through her encouragement in helping others less fortunate and sharing her very personal poems about her spiritual walk with the Lord, Fanny was always willing to give of herself. She STILL is a source of encouragement and hope to anyone who sings or reads one of her writings.

Fanny Crosby’s blindness did not hold her back from pursuing her passions and using the gifts she was given. She once said that she was happy to be blind so that the first sight she would ever see would be the face of her Savior in Heaven [para]. She had so many hurdles in life beyond her impaired vision, but she continued her writing and always sought out new ways she could be a blessing to others in need of help. She made history with her words. Through her music, she continues to open hearts, and through her lyrics, souls come alive. She is an inspiration to me as a woman, as a writer, and as a disabled person. Fanny Crosby made history with her works of praise songs, but through her actions, she left behind a legacy of love.

Blessed Assurance (Chorus)

This is my story, this is my song,

Praising my Savior all the day long;

This is my story, this is my song,

Praising my Savior all the day long.

-Fanny Crosby

Pass Me Not Oh Gentle Savior 

Resources:

To read and listen to Poems & Hymns by Fanny Crosby

www.1timothy4-13.com

www.wholesomewords.org/biography

http://en.wikipedia.org/wiki/Fanny_Crosby

How Years 16-22 Changed my Life at 28

“What’s with all of the appreciation? Isn’t pain and illness miserable…aren’t you suffering every day and lonely in bed? Don’t you hate that the world is spinning without you?” Don’t get me wrong, I’ve had plenty of pity party time over the years. Plenty of my own misery that I’ve crawled into. I still do from time to time. But, I have more gratitude now that is helping me along more these days. Why? How?

I was living my life, being an over-achiever, free-spirit, planner, optimist, perfectionist, social butterfly, spontaneous young person (yes all of those things at once). And boom: gimpy girl, doctors are your new BFF’s, your plans are a joke, and spontaneity is only reserved for your malfunctioning body. Adult life had just begun. The pieces had just fallen into place when they shattered apart so suddenly. I had so much fear about the future. Between all of the doctors ensuring me what a dim future I would have added to the horror stories I would read online, plus my own excruciating pain- equaled a young person very ill equipped to emotionally handle the fallout.

In the beginning, when I happened upon my first story of a child going through the same thing I was, I couldn’t help but draw strength from it. Knowing a child was in so much terrible pain every day, and still going to school and trying to walk or play- had me reconsider my own desperation. In all the times I was so ready to give up, there were definitely moments I would look up stories of children with the same pain disorder and remind myself that they don’t even realize they can check out. They just have to be strong- so they are. Because I’m in the same fight, I should also be strong beside them. Maybe you think it’s perverse, but it helped me. It helps me.

[One note: Others’ suffering does not negate one’s own trials and battles in life. Hopefully though, it can help us gain better perspective. We still must face our own pain intimately. A million other people in pain does not lessen my own struggle or yours. I just want to clarify that is not what I’m saying.]

It wasn’t until more recently, a few years ago when a myriad of other conditions floated my way, including a nasty one called POTS that changed my thoughts even more-so…

Even though I personally became chronically ill at 22 and then bedbound at 28, it is very common for young women of 16 to get POTS, unfortunately. There are teen girls at home and in hospitals all over the world hardly able to stand or sit up wondering what kind of future they will have. These young women are my heroes. Not only have they been teaching me how to better manage my condition using food, technology, and lifestyle choices, they also teach me through their attitudes. They keep pushing, keep trying, and they never give up hope.

When my POTS began something clicked for me. Even though my POTS entered my life with so many other conditions and more pain, making me more debilitated than ever, I’ve felt less grief for all I’m missing out on in life. It opened my eyes to how much I had done from 16 to 22 when my first chronic illness set in. In those 6 years, I finished high school, worked several jobs, had been in love, traveled the entire country, I learned how to do so many things with my hands, I used my body to go on many exciting adventures, and made amazing memories with my friends. I found the love of my life, lived independently, got married, bought a house, started college, and got the opportunity to spend quality time with my family.

For a very long time, I looked back at my life and memories and thought it wasn’t enough. I couldn’t even look at a old pictures without the memories crushing my heart- so I didn’t. It was like losing a loved one; losing myself. But if I can appreciate from 16 to 22, then I can appreciate all of it. What about the children whose illness inhibits their freedoms in life from a very young age? It changes the way I look back. Now I can look back at my memories and pictures and say, “Wow, I’m so blessed! God really allowed me to do so much!” Instead of, “I wish life could be as good as it used to be.”

Being thankful changes everything. Focusing on gratitude takes work though. And I have to avoid that which spirals me into my darkness. If you are toward the beginning of your journey, I don’t believe that mourning the loss of your life is negative. It’s an appropriate response and grieving is a valuable part of the illness journey. It has just taken me a long time to get here, and I have required a great deal of grace to find my way. Blessings to you on your own path.

 

“And I said, This is my infirmity: but I will remember the years of the right hand of the most High. I will remember the works of the Lord: surely I will remember thy wonders of old. I will meditate also of all thy work, and talk of thy doings.” -Psalm 77:10-12

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