We should all have a calling, right? A passion that drives us. “If you find your purpose, you will never work a day in your life”, and will be wonderfully successful, respected, admired, and make loads of money. At least, that’s what I’ve always heard, so it must be true.
What if I told you that having a “Life’s Purpose” is a myth.
We are taught by society, and modern culture that to be fulfilled, we have to find our one special calling, that career we love, and it will bring us prosperity and fortune all of our days.
Why is this philosophy problematic?
…Because we aren’t built to have only one purpose. We are each meant to fulfill many unique and diverse missions throughout our lives. We have dreams and goals for ourselves, but we are multidimensional beings and our greatest life passions and fulfillments may or may not be wrapped up in that job we desire.
Most of the time when we say, “What is God’s will for my life?” We are referring to our careers, right? But God allows purpose to thrive in so many aspects of our lives.
You can be a passionate artist, a wife, mother, doctor, friend, AND a passionate writer. You can find calling, drive, and fulfillment in multiple areas of your life.
The world hands us such an impossible task of figuring out our one and only sparkling, unicorn reason for existing, and it puts sooooo much pressure on all of us. Once we believe we’ve found our “life’s calling”, complete our degrees or training, we can finally pour our passion into the work… but some time later, there’s an itch that comes over us. We feel unsettled, maybe even claustrophobic. If you’ve felt this way before, it’s miserable. And it’s also a huge disappointment that the dream we wished for doesn’t feel like we hoped it would. You do everything you can to refresh that passion you once had in your work, however, more than likely, the feeling of displacement whittles away at your spirit.
A Life’s Purpose is not the same as a Life of Purpose.
We were not built to stay in one place. God has so many plans for each of us. Some of us are amazing multi-taskers, juggling projects and people all at once, and others of us pour everything we have into one job, person, or other undertaking, and then we are diverted to our next chapters. One season ends, and the next begins. Sometimes there are painful seasons in between for our growth, for pruning, and for us to prepare for whatever we are meant to do next. And for some of us, those painful seasons last, so we seek out purpose and meaning in the big and small moments.
Callings come in seasons. We all hear the stories again and again: Someone had a career they loved, then a crisis struck, but that sideroad somehow illuminated a new and exciting path. It happens all the time.
Like me, you might be asking, “What is God’s will for my life now?” You might feel a little bit lost in the fog, the upside-down, so to speak. Very rarely, we have these beautiful gifts of some extended time when we are just waiting to find out- what’s next? It can seem like forever, but rest assured, you are never forgotten by your Creator.
I’m not very good at being still and peaceful while I wait, because I am so impatient. It is such a comfort to know, we are always fulfilling our Life’s Purpose when our desire is to please God. When you’re seeking to do the next right thing, you can be at ease that you are living inside of your destiny.
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?
To be thankful while you are suffering is one thing, but to be thankful for suffering….
Once in a while in the support group I administrate, there is someone who makes a statement that is so powerful, it catches me off guard and it sets my soul on fire. In truth, this isn’t a rare occurrence. I guess you could say that those suffering so deeply every single moment of the day have some profound insights to share. One thing that inspires me the most is when people say they are thankful for their illness. That is a bold statement that I believe one would never come to lightly- and no one would EVER openly say something so provocative in a support group setting among a band of individuals with severe chronic diseases, unless they truly meant it. That’s why it always gives me pause whenever I hear such powerful expressions.
It’s not unusual for those who go through a near death experience or a serious short term illness to find deeper meaning and purpose. It’s no less real, but it is more common when the storms have an end, and suffering can be left behind. While it’s not rare for those with ongoing illness to eventually find new ways to appreciate life again, to say they are grateful for their illness, it is so much more rare in cases of chronic disease. Why? Because an illness that is daily, constant, and does not see an end- is far easier to hate than to get excited about. A condition which may be degenerative, becoming more painful and physically or mentally compromising over time, isn’t easily beloved…as you can imagine. To me, it’s almost a miracle hearing that anyone would be happy or thankful that they became so sick. Others with chronic illness can find statements like these offensive, even. These ideas of “illness gratitude” certainly border on the extreme, but make one wonder where their personal journeys have lead them to truly embrace their infirmities.
I’ve heard people claim to be thankful they are in pain and chronically ill because it transformed their lives. It made them see the world in a different light. Their conditions allowed them to shake off the clutter and stress of a life that they realized didn’t have substance, and focus on a life of greater meaning and value. They once believed losing their career meant losing their purpose, but I’ve spoken to those who say that they are so thankful they became ill because now they found their true calling. Some have said that their new life of chronic illness has enabled them to be there for people in ways they never could have in their “healthy” life, so they are forever thankful for their new sick bodies, and how useful they can be to others through deeper compassion and connection. Sometimes people are grateful they are in pain because it has brought them closer to their faith, and they cherish a higher spiritual connection they never could have had without constantly being pushed to the edge of what they can endure. They are forced to cling to God instead of their own strength, and in that comfort, they find gratitude for suffering that brought them more enrichment spiritually.
Again, these are extreme statements, but thought provoking and inspiring nonetheless!
Most often, people I encounter long for a cure or pray to be healed. That’s normal, and that’s not at all unhealthy. Research in psychology equates the loss of health or a limb to losing a family member or spouse passing away. It’s earth-shattering. The losses just keep coming. With chronic illness, the grief starts over again and again. It’s cavernous, and there’s no end to the emotional roller coaster or the physical fight. Hoping for a cure, for healing, or for remission is what we all are desperate for, and that focus can at times become crucial for survival. But for some of us, restoration of health becomes a worship in itself, and begins to supersede everything else. Seeking a cure or healing can become such a focus that illness becomes nothing but a betrayal of God, of government, of doctors, and family. Nothing feels real except wellness and full restoration.
Obviously these are 2 opposite sides of the spectrum, and balance is always the goal.
When I was diagnosed at 22, I spent the first years asking God WHY? Staying up every night in excruciating pain, my leg felt as though it was breaking, nerves like being electrocuted and burning pain like nothing I could have ever imagined before. Full body spasms, tremors, the room spinning, my heart racing and palpitating, wondering how I had planned and worked so hard for everything that had lead me here, just to lose it to this “incurable degenerative” condition that no one seemed to be taking very seriously to help me try recover from. It didn’t make any sense. As much as I tried to analyze it, I couldn’t crack the code. It only made sense for me to get better, so I searched for my panacea, and prayed (demanding) that God must heal me. At the time, I wasn’t a big prayer person, but illness has a way of connecting you to your higher power. In the Bible, yes, there is healing, but there is also so much pain. The importance of learning through pain, finding ways to share strength or comfort inside of infirmities, these are scriptures that have been so encouraging to me.
I eventually felt lead to make a decision. I believed God would heal me, and I still do believe that is true. But, I decided that if I was going to spend any period of time living a “sick life” I was going to explore it. As much as I was desperate to go back in time, moving forward is all I could do, it’s all any of us can do- Even if it’s slowly, frightened, and with tears in our eyes.
I cannot go as far as saying that I am thankful I am chronically ill. I can say that at almost 12 years, I’m so grateful I made that decision to press forward and try to find myself inside of this life. If I had stayed so distracted by my past, or so focused on what I might be losing in the future, I would have missed every bit of the beauty, the miracles, the blessings, the generosity of others, the opportunities to be of use, and purpose found inside of this pain.
More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5:3-5
I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. 2 Corinthians 12:10
For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. Romans 8:18
When the cares of my heart are many, your consolations cheer my soul. Psalm 94:19
I’m a pretty tough customer in physical therapy. But, the other day my physical therapist said something very poignant that gave me pause. I’d like to share it with you.
He said, because I’ve had chronic illness for so long, I’ve adopted so many coping strategies to help me through. So many techniques and methods I call my own to get me from one day to the next. (And here he is teaching this old dog new tricks.) However, he was right when he asked me, “Is all of this still working for you?”
You start collecting techniques from the very first moment you hear the word, “permanent” or “chronic.” Our doctors don’t help as quickly as our own shifts and wriggles take effect. Soon enough, you’ve built a pattern for yourself that is keeping you going. Over so many years, and multiple conditions, you better believe I have some modalities and some definite patterns! Are they still working for me?
Could they be holding me back?
Adaptation is paramount with chronic illness. You have to be able to rebuild in order to find purpose again, to find yourself again amid your ever-changing body. But as your body changes, does the structure that you built change with it?
For instance, if all you were once able to do is use the computer or your smart phone, maybe you grew a strong online network which gave you purpose. You could have done nothing instead, but you were brave and reached out to others online. It was incredible how much your work online distracted from your illness and impacted your life and the lives of others! It may have even saved your life. But as your body changes, you realize you can do more tactile work like crafting. Is spending as much time on the computer still working for you? Or, could it even be holding you back from moving more?
I have to go over so many of the coping tools I use- all of the amazing methods which have helped me to this point and ask this question. It’s spring after all; time for a spring cleaning of sorts. Is it STILL working? It may have saved my life last year, but will it take me to my next goal this year?
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.
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
So it has been 9 months since my husband and I parted ways. For us it was not a gradual thing. Well, maybe for him it was….
[I’m going to get through this without talking about his personal details.]
On my end, I knew he had been struggling all year, and I was trying to be uplifting. One day, I was texting him love messages, silly photos (which are now just embarrassing), funny videos, and anything to try to help him smile at work. The very next day, I was living at my parents’, confused, and unsure what happened the day before, or why.
I don’t remember much about that conversation after he got home. I do remember messaging a friend in a daze asking what I should take with me, and Google searching
: “what do you take in case of a fire.”
In some ways, 9 months has flown by, and in other ways, it has dragged on much too slowly. It has felt impossible at times for my heart to catch up to all that has occurred, the choices that were no longer mine to make, the quickly unraveling dreams that were out of my control. I was often reminded that I had experience with surrendering, and making peace with pain, and could do it again if forced to. (I think people with disabilities are resilient in that way, and though it feels like every day is a fight, we learn adaptability which is a gift!) On the other hand, I felt continually impatient. If you have ever waited for test results that would almost surely come back with an outcome you don’t want to hear, something within you cannot help but crave the knowledge of it, no matter how bad. Almost like the tree of good and evil. Waiting was like an itch I couldn’t scratch. A part of me wanted to know my future in certain terms, and with immediacy. The rest of me was at peace to wait a lifetime in limbo, however impractical that would be.
That afternoon was our last conversation as husband and wife; I didn’t know it was goodbye at the time. You may remember, I wrote A Season of Waiting just after. Now you know the inspiration behind the message.
And while so many months can seem like a very long time, with a new life emerging beneath me, there are still huge landmines that explode in my face when I least expect it. Several exploded from the mail box right after breakfast this morning. It was a hard day, but not the first, not the last, and I’ve certainly not seen the last good day either. The “process” ended just last month, but THIS process is only beginning.
I’m trying to grow accustomed to managing life on my own. …Without having someone to share these pitfalls and triumphs with. Loss and heartbreak is certainly not new to humans; and I will adjust to it better and better. I confide in God, and it is incredibly humbling to share my worries with the creator of the universe.
I’m thankful to be ending my day with you, eating bacon and drinking chocolate coconut milk. (I get to eat that kind of thing, because I have POTS… at least that’s my story.) That IS my story… at least part of it.
Have a good night. And avoid those landmines.
New page, Disabled and Divorced
PS, Check out the counter for my sister’s wedding at the bottom of the page. Getting close!
Breathe. Don’t pass out. Keep moving forward. One foot in front of the other. Pay no attention to your pain. Focus on your breathing. Focus on your legs not giving out. Don’t fall down! Ok, throwing up would be the worst right now. Here come the shakes… Breath girl! The light? Do we have to do the light? Oh no, there goes your head. I can’t see, I can’t see… This hurts too much. I can’t do this. I have to do it. Okay, let’s do it.
This was this morning in physical therapy. My physical therapist comes by once each week. Some days are good, some days are bad. Today was a great day, so we decided to do something I’ve never done before… at least not for almost 5 years: go outside.
When I go to doctor’s appointments, I’m usually taken out from my bed in a wheelchair. I have a face mask on, ear plugs, a head set, and I keep my head down between my knees to keep my blood pressure from plummeting, so I don’t faint. If I’m in the seated position too long, over with my head down, I have to get out of the chair and lay down on the ground with my knees tucked to regulate my blood pressure, breathing, and head pain. (Laying in an elevator or doctor’s office waiting room hasn’t made me any friends-yet.) When I get to the car, I lay in the backseat under pillows and blankets for arduous the drive.
Today, I wasn’t going anywhere but the porch. It was a warm overcast day, and happened to be very quiet on our road. What better day than this to do an “exposure” to sound and light? I don’t have OCD or an anxiety disorder and I’m not in Cognitive Behavioral Therapy, but desensitizing your body and brain to stressors and pain are very similar in traditional Physical Therapy. My PT uses Cardiac Rehab Therapy and Pain Rehab Therapy with me to get me stronger and moving… and it IS working. My fatigue is lessening, I’m stronger, I can tolerate more sound and light than I used to, I don’t pass out like before, and I’m progressing in general.
But today, there was another sensitivity I didn’t expect to encounter…
I bent over my brand new walker, slowly moving out toward the door for the first time, swapping my eye-mask for dark tinted sunglasses. Because I was pretty much blinded by the daylight, I was trying to maneuver awkwardly out the front door. My brother had joined in with my physical therapist to help me on my pilgrimage. I was so focused on all of the physical aspects written in the first paragraph that it caught me so off guard when my physical therapist wrapped his hand around my waste and grabbed my hand to help me out. That’s the moment I choked back tears. That’s the pain that hurt the worst.
It wasn’t the horrible pain in my head, the ringing in my ears, the screaming sound of birds chirping, or my heart racing from trying to be on my feet for too long, it was the caring touch of another person that reminded me so much of my ex-spouse… that almost took me down.
Maybe that sounds creepy to you, but if you have a condition like CRPS/RSD in which people around you are unsure where and how they can touch you, so much that they decide it’s best not to at all, you understand the touch aspect of this. Or, if you are no longer with your once-significant other, you will understand missing supportive touch, like a pat on the back, or an outreached hand when they notice you need help down a step.
Today was 2 firsts. I went out onto the porch successfully. I knocked out another goal! Wahoo! I turned my low pain day into a triumph. It was also a day I realized how much I miss supportive touch. I really want to find ways to incorporate touch back into my life, however physically painful, so it isn’t this emotionally painful to be without.
“Touch has a memory.”
― John Keats
I’m in tears, silently cheering for this amazing warrior who is standing and giving a voice to all chronic survivors as you will be.
I hope you will rise up with her and pass this along.
Whether you have a chronic illness or you know someone with one, this wise young woman’s words will help to give meaning to so much that is unexplained.
Dear healthy people,
Let me tell you about becoming a “sickbody.” I have Ankylosing Spondylitis. Right, just don’t even try to pronounce that. We’ll stick with calling it A.S., yeah? Really all you need to know about it for this blog post is that it’s a chronic autoimmune disease. I’ll share a link at the end for you to read more about it. (Here’s a distracting picture of me to help you along)
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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