Oh friends, life is such a journey…. faith is such a journey. And I must admit that I get very weary. Like ground down to a fine powder kind of weary.
It is easy to say that God is in control. I know some who revert to that message like it is their refrain between sentences. We continue to push and plan and overcome, and then get angry at Him when WE fail.
When I was diagnosed with chronic pain in 2004, I felt like my adult life was just getting rolling. I had big dreams, and I was determined to keep moving forward with my own plans.
My body was deteriorating quickly, however. I was taking so many medications, doing bizarre and worsening treatments as an attempt to keep up with family, home, work, college, church, small group, and any of my spare time I spent in a zombified pain daze on the couch.
No matter what walking aids I needed, no matter the sickening treatment, no matter what the doctors said about “progression,” I WOULD NOT be diverted from achieving my original goals.
I was in control.
Though my body lashed back at me, I fought and squirmed and raged against it- to keep going on my path.
Surrender is a difficult topic or act for most of us to comprehend.
I have always struggled to relinquish control, so everything about the idea of surrender goes against my nature. I wonder if anyone else reading this can relate to the word perfectionist as much as I could?
Years ago, when I was having ketamine infusions to try to tame my RSD/CRPS pain, I would interfere with the nurse’s vitals setup. In my mind I was helping, but to them I was only getting in the way, of course.
“Do you want to do this yourself?” a nurse once snapped at me.
Oops, I thought. But then…I knew my answer would have been, “yes.”
Why? Why do I think I’m the one who will always be most effective at doing for myself, even when others have my very best interest in mind?
Then 6 years ago, after an experimental treatment they tried on me failed, I suddenly developed several comorbidities which have changed my life dramatically. My pain condition progressed far faster and worse than I ever imagined possible.
They say, don’t let chronic illness take over your life. But when your life becomes about: Breathing. Eating. Drinking. There is no “let” only “become.”
Illness can become your life if survival becomes your new goal.
There are some conditions you can’t fight through. You endure them. They change your body, and you are forced to adapt. You hit your “wall” every time you open your eyes.
Surrender is the choice that my body made for me. It tells me I don’t have another option but to bow to its wishes.
I lay here still and unspeaking, careful not to sway the already offset balance. But the moment I move or eat or swallow or make a sound, my flesh laughs at me. My already swirling, screaming, breath-begging body will burst into flames and melt into nothingness.
The world tells me to push, to fight, to Just. Keep. Going.
But I learn quickly that there is no push in this game. Only tricks, and cheats, and strategy.
It’s a chess match on a board I’ve never seen before, and my opponent is the only one with the rulebook.
Illness owns my body.
There is no free will flesh. There is no- push for one more minute. There is no- if I just take this pill.
This body has been exchanged, kidnapped, swapped for a rag doll.
Once, asking for help seemed an impossible exception only made in the most dire of circumstances.
Now, all of my physical and earthly necessities selflessly come from the hands of those I most admire. The eyes I have always looked up to- now see me at my worst. My body gives me no choice but to surrender to their gentle hands, but my heart is humbled and grateful to receive the gifts of their bottomless compassion. What better picture of mercy than this?
What better picture of grace?
Control freak. Feeling like a freak of nature. My natural systems are out of control. And nothing can be done, but wait. But pray.
Miss “plan for tomorrow.” Plan for your dreams. Dream big. Don’t give up. Your body gives up.
My body forces surrender on its own schedule- though my Creator waits patiently. While my body may act as a prison, forcing the white flag of my systems- my spirit goes of its own fruition. The more I relinquish control, the more grace is endowed.
God is in control, they say. They say it like an empty cliche.
Control is something I have owned. And something that has owned me. And God doesn’t control my will. I surrender it to Him. Child to Father. Tired, weak soul to loving, strength-lending Savior.
In this broken body, I see freedom.
(Re-posted from 2015)
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
My sister asked me what I wanted to do for my birthday last year. I told her that if I had been well enough, I would’ve wanted to invite friends over to make sandwiches to bring to hungry area children. I used to do this type of thing in high school sometimes, and last year fantasized that it might make for a unique summer birthday gathering that my friends would like to participate in (being my awesome friends). I was really only thinking out loud, and then asked her what she wanted to do for her birthday (since our birthdays fall inside the same week).
When my birthday came around, I went to stay at my parent’s for the week. On the day of my birthday, my family gave me a small photo album filled with pictures of smiling children. “How cute…What is this?” I asked, curious what my family was up to. My parents and sister had arranged to spend the day volunteering for a back to school program called Give a Kid a Chance which prepares underprivileged children for the coming school year. My family donated goods, packed backpacks and checked little heads for lice. They spent their entire Saturday volunteering for this wonderful program in honor of my birthday!!!! I was crying, they were crying, we were all emotional as they shared the details of the day. It is absolutely one of the most heartfelt and most humbling gifts I had ever received, (which others received) and I know I will never forget their beautiful selfless gesture.
When my mom explained why they did it, she said, “Volunteer work has always been such a big part of who you are. After you couldn’t help in the community any more, you turned your attention to caring for people online. Your sister told us what you would have wanted to do for your birthday, so we did this because you would have been doing this if you could have.”
I didn’t realize how much I needed a wake up call until that moment. I felt like a doorbell was being rung to the door of my soul that a warrior part of me had to close in order to stay alive. To fight the illness, I had to know my enemy, and get in the trenches with him. But the price was that a piece of me had to be shrouded away, protected in that way, while I fought through the very worst of it. My family didn’t know how much I desperately NEEDED this reminder of my core, of who I am.
No one had spoken of my former self out loud in what felt like years. Their gracious act and words were like an unlocking spell. Something awakened inside of me on that birthday that started a transformation- which is still in progress. I am so thankful and fortunate for them, for having the ability to see the good in who I am now, and for never forgetting the person I have always been.
I woke up the following morning with this poem trickling from my brain:
In the time and space between
dark rooms and restless painful nights,
you might have time to count
too many stains on the paint.
The time between forgotton breaths
may have left you wondering
who you used to be.
Did the air sneak your old life out?
Under the door?
Through the cracks in the floor?
Like Russian dolls,
the top one falls:
And mama sweeps it away.
Those who recall that ghost,
tip toe beside the host of the demon.
They bring pieces of the past,
until at last you remember.
The apparition waits outside.
Now, you can smell her perfume.
There are times during the fight that we must lay down our old lives and find a way to nurture today, without looking back or too far ahead. But I’ve also learned that reminders of your past can boost your spirit in the midst of a struggle. Wherever you are in your journey, I hope you have someone in your life who sees the strength in you and reminds you of it.
Blooming Beauty is by one of my favorite artists: Peggy Wolf. Check out her gallery on Etsy, you’ll love her as much as I do.
How do you feel when you hear that someone with your same condition has gotten well?
This blogger explores the honest thoughts and feelings she and so many of us experience when a fellow Spoonie recovers.
I hope you enjoy reading this post as much as I did:
Scenario: we read a newspaper article about someone who’s found an instant cure from (insert Spoonie condition of your affliction) after a relatively short amount of time. Our initial reaction probably includes some combination of these thoughts:
They were never ill in the first place.
They were ill but it’s not true that they are now well.
They can’t have had what I have.
It’s true that they recovered but for a different reason.
It’s great that they found a way to get well.
If I try that will it work for me?
I’ve been ill much longer, I’d know if that works.
Why have I been ill so long? It’s not fair.
The newspaper has got it wrong.
I think these reactions could do with some unpacking.
They were never ill in the first place.
After we’ve got over our initial reaction this thought is probably the easiest to kill…
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Over the last 10 years of chronic illness, people have told me that I will be healed if my faith is strong enough, that I am being prepared for something greater in my future, that all of this pain, loss, and disability will be given a special meaning some day. But, I believe that our lives are meaningful even in the midst of the darkest struggles. We don’t have to wait until life becomes perfect to attain purpose and perspective.
In the first couple years after I was diagnosed, college friends told me praying harder would heal me, one suggested the sins of my parents or grandparents may be expressed through my illness, family members sent me books about focusing on God’s healing promises, and I was prayed over for healing at church more times than I can count.
I was so angry and frustrated at everyone! God wasn’t healing me, I was getting worse! Why didn’t they understand? But no one did… I felt all alone to face this new monster eating away at my body and taking down my dreams and abilities one by one. I had such a strong confidence in my purpose, in my “calling,” and I didn’t know why those passions would be given to me, if only to be ripped away.
I do believe God has the power to heal my body. I also believe that healing can come in other forms as well. I used to pray and pray for my body to be healed, for the horrible pain to go away, and for my life to go back to the way it was. Of course I did. Of course I want my pain to go away and for life to be easier. Everyone in pain wants that! As life became a one-day-at-a-time struggle for survival, talking to God changed also. My heart desired to be of service to others (on support groups, online, in my relationships, etc.). Over time, I realized those prayers overtook the ones begging for physical healing. I believe there are different kinds of healing beyond physical wholeness that I hadn’t thought about before chronic illness, or during my first years living with it.
In each of the instances with my friends and family, they were showing up in the only way they knew how to offer hope and support. I’ve since learned that the people who show up are the ones to hold onto- sometimes they take some time and guidance to figure it out though.
During the storms in life, it is so common to be told that when the storm lifts, we will use what we’ve learned to help someone else, or we will have a greater sense of clarity. Well, when the rain doesn’t let up, when your body is constantly beating you up, if you are terminally ill, there is no waiting for healing to make use of your life today. Loss of health forces us each to look at our mortality and time in a new way. The desire to make a difference in the world doesn’t stop just because one’s legs, nervous system, or liver is failing. For so many remarkable individuals I have met over the years, illness can even inspire a new-found purpose, passion for growing in new ways, and redefining success based on what they hold most precious vs. what society has told them is of importance.
If you feel as though your purpose has been lost, and you don’t know why your life has taken this sudden detour, please know that you are not alone, and you are still on a path that is your own. You have not been forgotten. Your life still has meaning, even now- even in the mess you feel you are going through. You don’t have to wait for the perfect body and perfect life to be useful. If I had waited for that kind of moment, I think I would be waiting for eternity! Even in the middle of your struggle, your story matters. What you are going through matters.
You might be waiting for an important test result to come in, for doctors to finally diagnose you after years of unexplained illness, for the medication trial to become available, or you might be waiting to see if your surgery heals without additional complications. You might be waiting for a loved one to return safely from a dangerous trip overseas, for important news about your finances, or you might be waiting to see if your friend will recover from cancer.
Waiting is a helpless feeling, no matter how much we can “help” the situation…the feeling that we are not the ones in control of the outcome makes us feel useless. Not knowing the outcome causes anxious, nervous impatient feelings that, for me come in waves which are accompanied by a racing mind.
For a person who started out bread to be the go-to person for fixing and fast problem solving, it seems life instead has been teaching me about patience, seeking guidance and waiting out storms. Instead of giving me problems to solve, I have problems that can only be solved through the healing of time.
Even though it is a useless feeling to wait, wait, wait, I don’t believe in waiting we are supposed to throw our hands up and stop seeking guidance. There are always more calls we can make, more specialists we can see, ways we can take care of our health, and people we can reach out to. But, if you have been waiting on something that weighs on your heart, there is only so much you can do to push the pace of the answer you so desire. Sometimes we can spin ourselves into a frenzy trying to get the answer we want to come to us faster, when some things are out of our hands. Praying, quietly seeking guidance and listening are also useful actions- though exceedingly more difficult to choose.
I am waiting for some very important answers in my life right now…Some answers that will forever change life as I know it to be. Maybe you remember a stretch of time like that from your past, and how you felt. How did you fill those long days waiting for tomorrow? Because of so many years of chronic illness, it feels as though waiting has been a regular part of life. Life with chronic illness teaches us to find the good, useful, and gratitude inside of the seemingly unlivable. These years of health struggles have taught me to lean into my faith and seek spiritual guidance. I am so grateful for the support and wisdom from those I respect, and I hope to be molded during this trial – what is God teaching me in this moment? …Because nothing is ever wasted.
Earlier this year, I wrote that “strength comes at the step we are on. Not weeks or months ahead.” As I work on waiting, and asking for patience, I try not to dwell on what challenges might come tomorrow. If you remember, my opening post for 2015 was a “No Fear Campaign.” It makes me want to shake my head when I think of the year God has been preparing me for!
About waiting, many say, “Just give it to God” as though it is as simple as forgetting about your heartache with your spouse, or your worries with your family, or your daily physical struggle with health that I know so many reading this are living with. I’m sorry if anyone has said that to you without compassion for what you are going through.
The past couple weeks have felt like an avalanche in many ways. When all of the rubble and dirt fell over me, and I went sliding down the hillside into the valley with the mound, even though I’m covered in a whole pile of dark unanswered questions, underneath, I’m praying, and studying, and being still (listening). Hopefully, this trial of waiting will lead to growth from that soil and rubble. My story is not finished. God is not through with me. Waiting is not doing nothing, waiting can be the most growing period in a person’s life. I am asking to be transformed during a time in limbo.
What did you do or what did you learn while you were in a season of limbo?
“Patience is power.
Patience is not an absence of action;
rather it is “timing”
it waits on the right time to act,
for the right principles
and in the right way.”
― Fulton J. Sheen
“But those who wait on the Lord shall renew their strength;
They shall mount up with wings like eagles,
They shall run and not be weary, They shall walk and not faint.” Isaiah 40:31
“What we are waiting for is not as important as what happens to us while we are waiting. Trust the process.”
― Mandy Hale
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.