I just want to remind you of something that may have slipped your mind this morning, or this week, or this month since the seasons of life are changing and the colder months can cast a darker, colder shadow at times.
Don’t forget the challenges which seemed impossible…when you said “there is no way I can get through this” but you did, and you are. Don’t ever forget.
Don’t forget when you had experienced all of the torture you thought you could shoulder. Don’t forget when heartbreak, physical pain, and sleepless nights pushed you past your breaking point. You said, “I can’t endure this nightmare for one more moment.”
Remember when you were ready to forget it all?
How are you still here after everything you’ve been through?
Don’t forget how you made it!
As chronic illness sufferers, we are so often reminded of something that I believe is of great detriment to our well being. When well people tell us that our health struggles, our personal challenges, the great storms of our lives will some day be of use. I’ve grown to loathe this idea. I realize that it is meant to be an encouragement, however, it causes myself and my brothers and sisters in pain deeper despair. “Some day?” It’s as though they are reminding us that we don’t have as much to give until we are restored to health. I completely reject anything of the sort!
I believe that you and I are worthy and valuable just as we are. Yes, right now. You were no more “special” when your nervous system was working properly, but I can attest that the memory of wellness certainly has a shining halo around it.
We feel so small and insignificant after illness devours our lives, and those we love in its wake. There is no “after the tsunami lifts” with chronic illness, as we are always seeking out cover, our safe places are constantly being destroyed, and the physical and emotional turmoil can feel endless. My only peace is in God, a relationship which has grown inside of my own tsunami.
This is a message I try to frequent on this page because I struggle so deeply with the whispers that my life isn’t enough, I should be doing more, and I would be so much more valuable as a person if only my body worked again. This is my pride speaking!
In those moments when the whispers win, I have forgotten how many opportunities I’m supplied with to have an impact, even in the very midst of my personal battles. Maybe, and probably because of my personal struggles, I’ve been allowed these chances. What seemingly small opportunities and connections might you be taking for granted in your own life?
The next time someone reminds you that all the pain you are battling will be worth something some day, please remind them that pain doesn’t have to stay hidden, and that your time traveling the path of illness isn’t a waste.
I don’t believe we must wait until we are perfect for our lives to have value. If that’s true, then we will all be waiting forever! Are we meant to see the silver lining in every storm before God can give us purpose through it? Even in the very midst of the battle, your story, your experience, your willingness to relate to and comfort others is so rare and valuable that it stands out among the noise and busy crowded world we live in.
It’s so easy to withdraw when the going gets tough. In time, however, we feel so marginalized and isolated. You do have a voice. Your story, your purpose, your personal gifts matter- and you are needed in this world.
We undervalue the quiet connections, asking others how they are and listening in return, sending a note by mail to a struggling friend, or letting someone know they have been in your prayers. Society does not measure these acts as successes, but what if you redefine success? You may have very little energy to spare, but what you have to share is precious.
I believe God’s measure of success looks much different than our own. We become so focused on perfection, staying hidden until the right moment to present ourselves shiny and clean, having overcome our difficult and uncomfortable circumstances. This is what the rest of the world applauds. But don’t we each have unique and valuable lessons to share that come with the daily perseverance of ongoing disease?
It’s one thing to be crippled by a body that relentlessly fights against you, but please don’t believe the lie that you are less-than or it will cripple your spirit.
Today was the second annual Disability Pride parade in NYC!
Here in this video you’ll see disabled individuals dancing together to commence the opening of the parade. This dance speaks to the nature of disability- the diverse disabilities we can see with our eyes, and those which are invisible.
As you watch the video, and think about some of the reasons for a parade like this…
Many who have declining health feel ashamed of their bodies, and in time, may also feel ashamed of themselves. Friends stop reaching out as health issues just sound like “drama” to most people who have never faced a health crisis. So many have been forced to leave behind a career, or dreams they once held dear. Although it sounds harsh, it’s not uncommon at all for family members to tease or bully as individuals change physically and/or mentally, leaving them extremely self conscious. People can be very judgmental of body shapes, walking aids, and challenges that are unfamiliar. Others are quick to call out what they see as “inconsistencies.” Even strangers in public call those in wheel chairs “liars” at times when they don’t understand that paralysis isn’t the only reason one might need the aid of wheels, or that a handicapped parking spot might be needed by someone who can walk normally.
It’s no wonder that people start to lose their self worth, and isolate themselves as a disability changes them.
You know what? FORGET EVERYONE!
So, this isn’t a news flash, but people don’t get it, and they don’t get you. You, my dear, have so much to be proud of, and SO MUCH to share with the world!
You are an over-comer, a warrior, a never-giving-up, wheel rolling, cane sporting, walker toting, re-inventing, hope finding, doing it anyway, sometimes invisible illness (but never invisible)- always working to conquer your challenges: BRAVE fighter! Heck yes you should be proud!!!
You don’t have to prove how much pain you’re in every day, how badly cancer changed your body, you don’t have to show your prosthetic, or tell anyone what your mental illness is… unless you want to. You are living proof of pure strength. You don’t have to work to be an inspiration to anyone, but hey- you already are, kiddo. You’re pretty spectacular just the way you are, in the body you have right now.
Please don’t keep your amazing self on lock down. You’re the only you this world will ever have! Heart (((hugs))) going out.
What do you think of the Disability Pride Parade? How are you #DisabilityProud in your own life?
I can’t sleep. I feel so helpless and outraged over the losses and violence in the last week. I don’t want to pray about it. I don’t want to blog about it. I definitely don’t want to discuss it incessantly with others on facebook or twitter while we sit safely in our homes.
I want to do something.
I want to help.
I want kids to stop being killed on our American streets: black kids, gay kids, cops… are we at war? Because we are tearing our own people apart.
I don’t actually feel like I have a card to play. I’m a white woman in a safe neighborhood. I have plenty to eat. I am certain I’m privileged in ways that I haven’t even thought about.
Until I was in high school, I was raised in a home with bars on the windows, guns shooting every night, across the street from the projects, all the kids in the community had to be inside by dark. We were the only white family around, but our neighborhood was so diverse, that I grew up without the concept of racial divisions. But this world is going backward. My mother said yesterday that this week reminds her of the riots of 1968 as tears rolled down her face. We are going backward.
I told my sister this weekend that I’ve been having nightmares about her upcoming vacation to FL ever since 50 kids out at a gay night club were murdered. She said that she and my sister-in-law have been cautious after dark, and try to stay around areas with police even if they are out to eat after the sun goes down. They are an interracial gay couple, and theoretically this America accepts them today. But if you follow the news, you know that they BOTH remain in danger, so they show up in my bad dreams.
There’s a whole lot of sharing right now about forgiveness, unity, and praying from white people like me, but where is the outrage? Where is the responsibility to DO SOMETHING?
I might be white, but I don’t feel I have the privilege of doing nothing right now.
We are ALL responsible, don’t you see? This our world.
Use the hands and will and talents God blessed you with to rise up and help when something terrible happens in our country. Give blood, go to a peace rally, set up a GoFundMe page for one of the families involved in the shootings, organize a fundraiser in your community for an ending gun violence organization.
Instead, a lot of people are saying things like, “all lives matter” not just “black lives matter.”
Listen, it’s easy to say that when you aren’t part of a disenfranchised community who is desperate for a voice. If you have said that, remember that you have children right by you who don’t have enough to eat, young women, men and children being sold into sex slavery right in your community, and someone within walking distance is home-bound for the rest of their lives because we haven’t received competent medical care. These lives matter, and there are groups concerned to raise awareness for these victims as well.
My point is that it’s hypocritical to give children with autism a voice who need it, and also say that the black community shouldn’t raise its voice also. To have an ALL LIVES MATTER world, we have to be equals, and ALL have an equally loud voice.
You don’t have to use a hashtag or join a group of protesters to help build equality. Compassion, empathy, and action are the missing links that can help build bridges that we are craving for unity.
I pray this video from poet, author, and life force of nature, Maya Angelou is a peace to your heart, and an encouragement for you as she is for me.
I may feel helpless today, but never hopeless for change. Please be safe. God be with you.
I was messaging with my therapist recently, frustrated with the challenge of trying to find a treating pain management specialist under my new insurance. Sharing with her how angry I’ve been in recent years after being brushed aside by more than a dozen physicians I’ve looked to for help (messaging because speaking on the phone or seeing my therapist in person is out of the question for me). She rationally offered advice like, “Did you ask your last doctor for a referral for a new pain doctor?” And, “Have you tried seeing any specialists for your conditions? Why are you in so much pain? How about taking more pain medication? No one should be suffering like you are.”
Why did her rational, reasonable solutions make me want to scream?! Maybe because after over a decade of chronic illness, I know that her innocent view of medical care is like the ABC’s and I’m working off of XYZ, but the issues we face concerning our health care should not be so complicated. We are ill, and so many of us aren’t able to go so far out of our way to find help. It really should be so much more simple to find a good treating doctor. And when it isn’t, we fall through the cracks. We get worse. And the worse we get, the worse we get.
When doctors are knowledgeable about your condition and how to offer solutions, they will. When the options available are helping you manage, and the practice is making money off of the treatments offered, everyone is content. However, if your condition happens to worsen outside of the doctor’s comfort level, you might find yourself in a pickle. Your records show that you’ve tried so many different treatments for condition A, however because you now have conditons A#%@, other practices are less willing to see you. You wear a scarlet letter “C” on your records for COMPLEX, and from then on, you seem to be tucked into the bottom drawer of society.
This is happening to so many patients across the country. The new CDC guidelines didn’t help by limiting pain medication for chronic pain management, and neither did Obamacare. But, this is not a new problem and cannot be solely blamed on new government protocols, even if the current “solutions” have only pushed those of us with serious ongoing health needs further under society’s invisible rug- making us more invisible. Who sees to our care when we become “more complex?” As it stands, the more simple your case= the better your care. The more complex, rare, or worse off you are= the worse off your care is likely to become.
People who could have fully recovered and started back to work if they had been deemed worthy of attention earlier on, instead, further decline physically, mentally, and economically, and into a state of no return, forcing more and more people onto disability and social security- a status which statistically is difficult to recover from once you start.
Meet Kayla. Kayla is near middle aged and was diagnosed just after her symptoms began. She was set up with a team of specialists by her Primary Care Doctor. Kayla has had to change her life around since her diagnosis and feels so much loss for the things she once loved to do. She wishes there were a cure, but seeing her doctors regularly and trying new treatments reminds her there is hope. She is managing her condition by resting at home much of the time and has been able to continue mothering and finding support in her husband. She continues to work only part time now, and in her rest/recovery time, she has started to do what she always wanted to…write a book.
Meet Jonathan. Jonathan is in his 20’s and saw several specialists soon after his symptoms began, but no diagnosis was made. He spent years asking various doctors what might be wrong, but he was told he seemed young and healthy and the few tests they ran came back normal. Over time, his health so interfered with his work that he lost his job. His wife thought he might be faking his disorder to get out of his responsibilities and eventually left him, taking the their newborn. He couldn’t pay the bills any longer and lost the home. Finally, after years of illness, Jonathan is diagnosed, but his original condition left untreated for so long has caused a few other complications which are likely now permanent. With his diagnosis, he can now apply for disability, but he will likely never be able to work again or get back on his feet- financially or physically.
You can see in the best case scenario, how much hope a good doctor can offer. Even in Kayla’s case, everything changes, and we need the help of reliable physicians because we can’t do it on our own.
I can tell you that this happens to those with money, those with the best private insurance, this happens to those lucky enough to have family who can advocate for us, it happens to those who can advocate for themselves, it’s happening to the young and old, it happens to those with government insurance, it happens to people who can’t afford the special doctors, and it is especially happening to people whose health suddenly takes a sharp turn so that they can no longer advocate on their own behalf. People are slipping through the cracks, and there are more of us with chronic illnesses and rare diseases now than ever before!
You think it’s the emergency of your life, and you always imagine doctors being there for just this time, but you are made to feel that a chronically ill person’s emergencies aren’t quite as worth while. Slowly but surely, like a Polaroid picture’s image emerges, you get the picture that your life isn’t worth while either. Many people like myself won’t even call an ambulance if they believe it’s a life or death emergency. We’ve been down the hospital road too many times, and believe from experience that there is no hope in that big white building- not for so many…too many of us.
If they keep tucking the sickest people away in the bottom drawer of society, if they keep us under wraps, if they don’t allow us the medication and doctors we need to survive, and if they continue to legalize euthanasia in the U.S., then maybe we’ll all just disappear, and leave them alone, right?
Wrong! They aren’t shutting us down, they’re starving us out!
We might not be able to picket the CDC, or storm the halls of Congress, or hold a sit-in demonstration inside of a hospital building, but social media can’t contain us. We can write our senators, make videos, sound clips, share our stories on Facebook, become ambassadors for rare disease foundations, get involved with patient advocacy groups online, or guest write for blogs from our couches, wheelchairs and hospital beds. Maybe we can’t go on the walks to raise money for a cure, but we can help organize them! And don’t forget, our stories are the most powerful weapons we have to make change.
You are the same person you always were; your health changing is not your fault. Your worth is not defined by how well your legs work, or if you were able to eat something solid this month, or if a doctor deems your medical file “worthy” by looking at the papers inside. You are not your file. And I know I’ve caught some slack for saying this- but you are not your body either. You may not be able to scream, but we need your voice! Your story is unique, and will inspire someone else to keep going, and move another to vote differently.
Even though it’s not your job to be an inspiration… you already are. You matter.
“…I promise that where you are headed is better than where you’ve been. Maybe not tomorrow, maybe not the next day, but eventually daylight is coming.”
I love this blogger, and this woman. I hope you will take the time to read this to the end. She is a light-bringer wherever she goes.
During my descent into illness, all I could see was what was being taken from me. When chronic illness kept routinely shaking up my life in new and horrible ways, I started to believe that there was nothing to look forward to, and the injustice of going from perfectly fine to not fine at all was unforgivable. It’s natural to feel that way, everyone grieves uniquely, and we lose a lot in the transition from well to sick. Grieving is permitted, encouraged, and part of the process of regaining strength. It’s not pleasant to be in that place, where all roads lead away from your dreams, all days blend together because of the pain, and because of all the sadness, fogginess, stress, and panic of becoming suddenly or gradually disabled. You may in that time lose track of who you are for a second, or maybe for a…
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There are many things you can forgive your body for, but there are moments, relationships, days in life you miss which you will never get back, unforgettable, unforgivable events you are denied in the face of disability. My body is broken, and she continues to break my heart.
This is how those of us with chronic diseases struggle so deeply to have “self love.” Trapped inside bodies that attack us, and hearts which shoulder the guilt of our loved one’s pain from the hurt our illnesses have caused- child, love thyself. Love your abuser. Forgive the one which harms those you love the most. Forgive, forgive, forgive….
Body, you have taken my choices from me all of my adult life. Body, you are the abusive relationship I have never been able to flee. Body, you have stolen my health, my career, fun, freedom… my dreams. No permission was granted to you, yet you take all you touch. You are a jealous, volatile disease, and you only care about your own needs. I have suffered abuse and trauma at the hands of doctors on your account, though, you still batter me without compassion. I’ve been abandoned and made to feel worthless, INVISIBLE because of you body; I’ve had enough of your games!
Body, I break up with you. Sorry, not sorry.
I tear you from my being and leave you. I will still care for you, because I am obligated. I am bound to you in ways I cannot choose, but I will not love you. I will not call you my own. We are committed to one another, but I turn my back to you, body. You from here on out, you will be “Body” and I will go forward being me. This is my self love. This is my self compassion. This is my choice.
I rage against your victimization. Your assault on my essence is over. I choose to make my life despite you, in spite of you. I choose, I choose, I choose. My flesh and bone surrenders, but my spirit rises up! Your reign, your emotional and psychological torture is over. Call it dissociation, call it compartmentalizing call it what you will- it IS a detachment, and it is necessary.
I sign the papers and I box up your things. You can live in the basement and I will now and forevermore preside upstairs, in charge of THIS HOUSE.
X A Body of Hope
Please support Rare Disease Day on February 29th. www.rarediseaseday.us
My sister manages a student property center near one of the best universities in the country. It is known that more students from that school will withdraw due to psychological breakdowns and will have more suicide attempts than any other area college. She has already had several incidents this year at her property alone that ended with students being checked into the hospital for said reasons. They are all the most elite academics, but now, they are in competition with one another. Once the valedictorian of his high school is currently struggling to pass his college courses. So why are even the best and brightest failing to cope with the pressures of life?
I’ve been reading the book Learned Optimism by Martin Seligman. There was an entire revolution in psychological treatment called “Positive Psychology” which began after he wrote this breakthrough book in 1990. Before that, psychological practices were geared toward treating mental illness. Seligman asks the question, why aren’t people fulfilled and thriving when we know more about human behavior than ever before? Now, psychologists and counselors help people to become more than just not-sick, but actually thrive.
In his book, Learned Optimism, he theorizes why there is more depression, anxiety, suicide, and drug addiction than ever before when we live in a happiness-driven society. He believes it is much, much more than public awareness of mental health driving diagnoses. Children were once taught how to overcome obstacles and persevere, but teaching practices have shifted to the current focus of boosting self-confidence regardless of efforts. He proposes that individuals of prior generations were raised to believe they were surrounded by various types of support, and that sense of community has been lost today. In the past, people realized that their support system shared responsibility for every success, failure, and overall person they became. Because there was an awareness that outside forces contributed to their lives, when their hard work paid off, they were sharing their triumphs; when they failed, they wouldn’t fall too far or stay down too long as they had a safety net.
In the past, Americans valued country, faith in government and patriotism. People were raised connected to a personal faith in God, organized religion provided a community, connection with family was the cornerstone of society, and people were inclined to make close connections inside of their local communities. 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, we don’t grow up ingrained with the same surrounding support system, lasting connections, or faith in God and country.
Society teaches that your successes are your own to take pride in and celebrate. You are paving your own way in this world. There is a great focus on self-determination, but the tools for coping with inevitable life failures are incredibly lacking. We are taught that personal responsibility and success is everything, but when we fail (as we all do), the personal fallout can be devastating.
I was already planning to write this piece on Learned Optimism when I happened to 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 support that past generations grew up with (as in Learned Optimism). 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].
Other ways to become more resilient: accept good enough, focus on what you can control, find meaning in life, accept advice from your loved ones, take care of yourself, ask for/accept help, don’t be surprised when life changes suddenly, expect things to eventually get better, set goals you can achieve, laugh. 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 postured to “roll with the punches.”
The author of Learned Optimism says, “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, anxiety, and chronic pessimists are more likely to have health troubles later in life. Does this mean that society’s focus on self-reliance and self-esteem is creating generations of pessimists? The good news is, both resilience and optimism can be learned!
Learned Optimism by Martin E.P. Seligman, Ph.D.
Chronic Resilience: An Interview with Danea Horn by Toni Bernhard
10 Tips for Building Resilience in the Face of Chronic Illness by Mary J. Yerkes
Promoting happiness, while living with CRPS and mental health disorders
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