I never thought a car wreck that did damage to my elbow
would stop me from walking an entire year later. I never thought you could get a disease from a car wreck.
I never thought I would have to depend on anyone else
to get me through tough times in my life.
I never thought I would face an uncertain future
without the ability to answer the tough questions.
I am by nature a very opinionated, strong minded, determined and focused individual. Having my life turned upside down by an unforeseen event is not in anyone’s plans of course, but, the thought of it was always something I thought I knew exactly how I’d handle as a ‘strong and independent woman’. Little did I know that my ultimate undoing would also be the one thing that allowed me to become more whole as a person.
Looking back on last year’s thoughts on how this disease impacted my life over the first year of learning to deal with it, I was already at a place of seeing the blessings that came with the pain and the horror. I make it a priority to find good in all things or at least as many as possible. I don’t believe things are one way or another in life. I believe that things are the way we interpret them to be. Our perception and reactions to life determine what we take from each instance and whether or not we count it a blessing or a curse or in this case admit it is equal parts of each.
There are still times where I try to convince myself that this is all a bad mistake and that I’m really ok (when I feel good it’s easier to lie to myself) and the pain was just a figment of my imagination trumped up by my brain somehow. I still have those moments or days of denial where I really do want to refuse to believe that I will have to deal with this for the rest of my life. There are also days where I think I have it under control and manageable and that I can handle it. I fool myself into thinking that I am the one in control, not the disease.
I am learning that there is more to it than drawing hard lines, coming up with definitive answers or even being able to list symptoms. Everything is so fluid and ever changing with CRPS. Life equilibrium. Balance has never been so important and never meant so much to me as it does now. I’m learning to live in a state of seeking my own level the same way that water does. When my pain levels are up, my activity levels go down and vice versa. When I am frustrated with my limitations, I find ways to realize the gains that they have brought me in my emotional life. My physical life has forced my emotional life to do some very large sacrificing….and what I thought was me becoming weaker is turning out to be me learning to become stronger.
You see….. when life begins to strip you down to your core and bend and stretch you to your breaking point, you have to adjust and adapt and learn new methods. There is more to it than that though. You can get caught in the label, in the diagnosis, in the symptoms, in the daily rigor of the battle and forget that you have a life to live beyond the disease. You can forget to choose to take in the beauty around you, to find new strengths, new outlets, new hobbies, new friends, new resources, new paths to use your talents on. It is so easy to get stuck in the mud of the issues that come with CRPS/RSD….but we who have this disease have to learn to rise above and be water and flow and seek our own level. We have to learn to live differently. Life may never look the same, but that doesn’t mean it cannot be beautiful, or full of adventures. It just means we have to change our definitions and more than that we have to push ourselves to make new expectations, focus our perceptions and define our interpretations in a way that helps us grow and find positive experiences in the struggles that we face. If we don’t adapt we become stuck in that mud and the weight makes us feel like there is too much work involved in moving forward we become depressed and despondent because our expectations are still tied to our old life and our old abilities. I’m learning now to flow, to adapt, to change my focus away from what life was, what I used to think, expect, want, etc so that I can still have dreams, still have goals, still accomplish things. Now I do so as part of a team, with the help of friends, family and loved ones. The disease brings its own challenges, but if we accept our lives are not determined by external circumstances, but rather by our mental approach, we can and we will triumph despite the challenges, no matter what they are. Rise to the top, find balance, seek your own level and don’t stay stuck in the mud. Make the choice to look for a new perspective.
I never look forward to the pains I know the next year might bring, but I do actually anticipate with high hopes the new horizons and the new vantage points that come on the other side of the valleys. I plan to enjoy my journey no matter what, for as long as possible!!!
I am so honored to have Rikki as a guest writer for us 2 years running! I have revisited her post from last year “Broken Things can be Fixed” several times throughout this past year and it still chokes me up. She has so much wisdom, insight and vigor, it is easy to forget she is in her second year of Complex Regional Pain Syndrome. Thank you to Rikki for lending us your voice today and allowing us to share your end-of-year reflections on your ever-inspiring journey. Rikki has many hobbies including traveling with her family, uplifting others around her, and she has a passion for Celtic Mythology. Check out her fascinating Facebook page: Celtic Lore and Mythology.
To see more RSD/CRPS articles, artwork, and poetry, visit the Categories menu for “RSD/CRPS” or click here.
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
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
~Fire Brick Road~
Down this yellow brick road of fire and pain
There are things that you’ll learn and there’s knowledge you’ll gain.
You learn people prefer when you’re funny instead
Of telling the truth about how bad things get.
You’ll figure it out that folks get annoyed
When you tell them you’re hurting when they’re feeling joy.
If someone asks about your health facts,
You must pair each truth with a blessing you have.
Otherwise, they will think that you are pathetic,
Even though they may really seem sympathetic.
Make sure to be cautious about each complaint,
You’re “sick” now so people expect you to act like a saint!
A bit more advice as you walk the path:
You’ll subtract a few friends, so learn some quick math.
You’re just not fun like they remember,
But hang on to the ones who will love you forever.
If you are grateful, then you will do better
The things that are negative really can fester.
If someone else tries to meet a need,
It’s best to say “thanks!” and learn to receive.
This yellow brick road of fire and ice
Has more stuff like: Doctors, and money, and guilt… OH MY!
But on this road you aren’t alone
God’s with you, and others who limp it in toe.
So when you are ready just reach on out,
Someone will be here; there’s always traffic on this route.
-by A Body of Hope
Thank you to Artist Andrea for allowing her awesome Yellow Brick Road painting to be featured. Please go buy one of her unique original pieces from Etsy. Many of her paintings have the spirit of Frida Kahlo. Check them out!
Have you ever thought that you are the best friend you know? Are you the most responsible, caring, compassionate, shoulder-to-cry-on kind of friend who drops everything to be there for the people you love? Have you ever wished for a friend like yourself?
I used to think that. Although I so adored the people in my life, there were times when I felt some of the things I did for them were under-appreciated. When I had problems in my own life, when I needed someone to know just what could make ME feel better, I felt empty handed. Sounding familiar?
I was a doer, a giver, I needed to be needed. I set my life up so that I was the go-to person for all of my people. I was the Olivia Pope of my world. Even when I moved to a different state, within months I was a person anyone who knew me could count on. I constructed a safety net for everyone else, and then my own life turned upside down.
Even after illness set in, things did not change. In fact, I felt that no one had a grasp of anything I was going through. For the first time in my life, I was desperate for some care from others and it did not seem that anyone knew what to say or what to do for me. Looking back, some people were generous and a few did reach out to me; however, having never learned how to ask for help or knowing how to recognize a gift of compassion, I was too prideful at the time to see when it was actually happening. I was so programmed to say, “No thanks” and “I’m fine” when there were people who were really trying to help me out. I did not fully learn the gift of receiving until later on.
Sometimes tragedy is like this. The harder things get, the more clarity we can find.
You get so used to being self-reliant and so needed by others for so long that when it is time to accept a gift from another, it is like a foreign object that you naturally repel.
People who cared about me wanted to help me but I usually shut them down. There were those who never knew what exactly to do or say, but they tried to be there. I know now that those who stick around in uncomfortable times are keepers. Also, letting loved ones know how exactly they can help you makes THEM feel less powerless. It’s like when your husband/boyfriend/children try to help on cleaning day: if you give your loved ones specifics, they will learn how to better help with your complex needs. And mind-reading doesn’t count, ladies.
Receiving help and asking for what you need is a humbling experience. It’s lovely to help others but it’s humiliating when you need help yourself. That is the first thing I had to try to accept. You will have anger about it…try not to take it out on those giving to you. Don’t say things like, “I’m sorry you have to do this for me,” or “you will really get tired of helping me,” or “I can tell you don’t want to be doing that for me.” Don’t critique their attitude, or predict future resentments. Instead, say “thank you.” Your appreciation makes them feel positive about being helpful. You already know how good it feels to do for others, right? Learn to be a gracious receiver.
Don’t be too good- or not good enough to accept the very thing you do all the time for other people. It has taken me a while to learn that lesson. I am still learning… Those who give of themselves are always teaching me to be humble.
I had to consider why my life had always revolved around being helpful, yet I could not receive help offered to me. To top it off, I was too prideful to ask for help. When I was finally able to say “thank you” and mean it from the bottom of my heart without resentment, anger, shame or fear: gratitude swept over me and lit up everyone in my life like Christmas lights.
Before, giving and being needed was how I defined myself. Learning to receive showed me the love everyone around me had to offer. This lesson has been such a challenge; I am still learning to receive and to appreciate the blessings in my life, but the gift of gratitude has been a life-changing lesson. I believe learning to receive with a grateful heart makes a person a more understanding, more compassionate giver.
People love you and are there for you, too. Maybe not in the way you want them to be, but they might be exactly what YOU need. You are worthy of their love and their help. Please don’t miss out on receiving the gifts God is sending your way.
Sometimes those of us who have had very serious struggles can have some hang ups when it’s time to show compassion to our friends. Not all of us, and not always, but there are those times when our friends or family are facing difficulties and we end up doing or saying the very things we complain about people doing/saying to us when we are in need of support.
Why don’t we know better? Spoonies may even be the worst at this. Has anyone ever said, “I shouldn’t be complaining to you about my little ______.” I have come to believe that this is a problem. If anyone should be hearing out someone’s difficult day of not feeling well or emotionally struggling, don’t you think it should be someone who can empathize with feeling crummy? Yes, even if it’s a cold!
We who have gone through our daily battles, we who have lived in survival mode on and off for so long, and then when a loved one falls into his/her own valley: shouldn’t we be the best people for the job of lending an ear? But in stead, we listen to that little voice that says, “Are they kidding me with this?” Or, we try to give them our sage advice to protect them from what is coming. We may know some of what they are facing, but we aren’t them. They have a unique struggle, isolated from ours. Their pain, however similar or maybe seemingly less than ours, is relative to their own experiences in life. A struggle or illness that is tearing someone’s world apart, however lower on the pain scale we believe it is- still is shattering his/her life into pieces in ways we may never understand, and in ways we may never face. (see Proportional Pain and My Guilty Genes)
After surviving so many challenges, we often view others’ battles through the lenses of our own lives. Sometimes we go further than relating and into the realm of “been there lived that, bought a T-shirt.” Remember how, “I COMPLETELY understand” feels when someone says it to you on a bad day? It can feel even more isolating.
But we often do understand so many challenges because we have walked such a painful road of our own. We want to make sure our friends know they are not alone. We can be close by emotionally, available, and most of all: COMPASSIONATE. We don’t need to remind them how much pain we also have felt, or how many times we have been in their shoes. We don’t need to compare horror stories or solve their problems every time they have an issue we believe we can solve. Compassion is the language that tells your loved one that they are not walking their harsh road alone.
I have to confess that this was written in response to a few of my own very dear loved ones recently facing some challenges. I fear I am guilty of failing them in all of the above ways in attempts to “help” when I should be the one person who knows how to handle their pain and grief, shouldn’t I? However, they have been teaching, growing experiences that I am thankful for. In the beginning years of my illness, I used to get secretly annoyed with people for even talking about their allergies in my presence. But now, I want to be the person people come to for comfort. I pray I can continue learning to be a humble, caring, compassionate friend for those I love so much.
“If pain doesn’t lead to humility, you have wasted your suffering.”
-Katerina S. Klemer
Thank you to Elle Moss Conceptual Fine Art Photography
Please go purchase one of her lovely original prints for your home or gifts. She has so many whimsical, seasonal and Autumn images to choose from.
Facebook asks me to take these ridiculous quizzes. Am I a pair of stilettos or a unicorn? You know the ones; they are meant to be fun… Like personality quizzes a Psychology dropout on pot (lots) would have put together.
I can say that I like potato chips more than honey, but am I answering the question this way because I now have low blood pressure and crave salty food all the time?
On a lazy afternoon would you go hiking, hang with your friends, or lie around and do nothing? Well, now that I’m sequestered to bed in a dark quiet room on account of my “hot messness,” (intractable chronic migraine & csf imbalance) how am I meant to answer?
I think of the many lives I have had and I am grateful for each one. Because I’m a woman, I know that every woman reading this has multiple lives. Many great-balancing women juggle all of their lives at once, but my lives are like a cat’s. Each one is unique and wild with stripes and spots. While each life ends and another begins, my soul remains constant. Once I could tell the pothead quizmaster exactly which kind of fabulous shoe I prefer without my chronic pain condition in my leg confusing my answer (fyi: wooden strappy wedge).
Do I answer a personality quiz without taking my ailments into consideration? But those things are just what I do, they are not who I am. I am not my illness and my illness is not supposed to define me– yet it’s really good at influencing just about every part of my life now. What about becoming a mom and how much a woman’s life changes when she has a baby? You are still you, but everything else in your life is now changed forever. And the truth is, my personality HAS changed in some ways because of these hardships…how could I not grow or evolve?
I’m still the person I was. I still love all of the things I can’t do anymore: the hiking, the kayaking, wearing fabulous high heels (probably not simultaneously)…I don’t pine away 24/7, but when I’m faced with the specific question: Who are you? I do feel fractured.
Oh well… I’m fractured, I suppose. Oh, and I’m also a Dragon, apparently (thanks quizman). I wanted to be Fairy. Well, maybe in another life (wink).
This was a piece I contributed to Project Naked. This is a great program/blog in which women from all backgrounds, ages and walks of life share stories about their bodies. All women are invited to contribute. They are very hopeful to hear more from those with ongoing health concerns as the relationship with our bodies is so unique. Follow this link to read my Poem “This Body” and other women’s powerful works.
Here you can learn more about submitting one of your own pieces to: ProjectNaked.