Out of Brokenness, Reimagining Hope

I have been thinking a lot lately about hope, and I have come to believe that hope is essential to life. When you think about it most people hold onto hope on a daily basis, even if it’s not a conscious thought. You hope the weather will be good on the weekend, you hope the guy you met calls, you hope you get a raise at work, you hope traffic won’t be bad, you hope you get over this cold soon, you hope you lose ten pounds…. With hope we are constantly planting wishes in our immediate and distant future with the expectancy they will blossom.       

This is why with chronic illness the loss of hope is equal to that of the physical suffering; it’s an internal death. Pain can be pushed through if you have hope it will end. Isolation can be endured if you have hope of socializing again. We can endure much more than we can imagine if we have hope throughout; hope for healing, hope for a better future, hope for life as we wish it to someday become a reality…..      

When we construct our hopes and dreams they are built on a foundation of what we feel is possible. After all we do not tend to realistically hope for things that are not in the realm of possibility, I guess if we do we call them pipe dreams. But when long-term illness and passing years of suffering rob you of the possibilities that are still attainable for a “normal” person, how then do you dream? What does hope look like with the shifts in what is possible 

     Of course the first dream for anyone that has been sick for a long time is for health, and subsequently health is the gateway to everything else we want in life: relationships, activities, happiness, success, travel,  family…LIFE. And in my opinion there are few things as painful as when hope is squelched and snatched away from you.  

     Now chronic illness looks a little different for every individual. For myself I am immensely blessed that I have come a long way in my 6+ years of treatment since Lyme diagnosis and there has been a lot of improvement. But the struggles continue and I may continue to struggle with autoimmune and other conditions for the rest of my life. So as my “younger” years continue to diminish like a fading horizon line, I have had to construct how to rebuild hopes that are now built on a different foundation, a foundation of what is possible for me now.  

    I had an emotional reshaping of my hopes with my last downturn in health, and a lot of the hopes I had been holding onto for many years got torn down; these constructs were apart of my reality, part of the paradigm that made up my world. These things (that in my mind) were apart of what life had in store for me. The realization of loss was a sickening sucker punch of reality that knocked me down flat. I had been living in that place of rubble for several months, and I had to basically go through a grieving process and lay to rest my virtual hope chest. Coming back out of the dark it took a lot of questioning whether rebuilding the hope tower was worth it. Should I accept a state of apathy as my reality… live in the small little box that life has given me and never expect anything more? Or is apathy just another unhealthy coping mechanism that will ultimately rob me of even more life? Questions questions…. introspection.       

Rebuilding hope. 
 

     At the time I mused: “Of course rebuilding my hope tower will look very different than before and be much smaller, but right now I’m not sure what to build it with. Or should I? Is that my job or God’s? Would He approve of my giving up on hope because it hurts too much to hold on?” 

    I have never stopped believing that my future and hope is in God, that He has a reason and purpose in everything He allows in my life, but what His plans are (obviously) are vastly different from anything I ever envisioned. I am looking at leaving my thirties behind the last day of this year and this doesn’t quite seem real. In my mind I’m still somewhere in my late twenties, waiting for the all the things the normal progression of life will bring. In some ways life for the chronically ill is like a treadmill, running in place and never getting anywhere but expending energy all the same and there is no end to exhaustion.       
So friends, as I have said goodbye to children and family, to independence, to financial stability, to being able to stop working (that takes all my energy robbing
 me of having a life outside it), to success, to travel, to normalcy, and all the perks that come with those things…. (At least in my own ability to achieve them).
    
But I’m still here. The scorched earth of where my hope tower burned down became the fertile soil to plant new hope for the future, both immediate and distant. I do have seeds I’m watering, and they are founded in deeper things and maybe are not all about
 me. They are seeds of faith. Seeds of love. Seeds of family and friends. Seeds of gratitude. Seeds of empathy for others. Seeds of a commission to my chronic illness community.   I’m still here. 


Painting is titled “Hope Through Sorrow”, a piece I recently finished 
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When the Media Actually Hurts The Chronic Illness Community

I encourage everyone to read the article below posted by an editor on The Mighty.

As you may know The Mighty is the leading site for various chronic illnesses and an advocate for that community.

Beware of Afflicted

Where Did That Come From?!?!

Words. Nothing more powerful. More encouraging…..Emotive. Destructive. Attractive, And about as many more adjectives as you could come up with.

But that first word, powerful is maybe the one that overshadows the rest, and gives all the other adjectives their weight. Also the one we maybe too often forget.

Words that carry the most weight and power are often fueled by the most driving force in our humanity: emotion, and that is both wonderful and scary depending on the circumstances.

I’ve been thinking lately about my communications and where my “ugly” words come from. Not necessarily horrible, but just the ones that come off wrong, are misinterpreted, lack tact and just in general convey a “me” I don’t like.

Where do those come from? Well, after some thought, I believe they usually they come from places of fear, hurt, desperation, frustration, and the like.

There have been a couple instances lately where maybe the gist of what I said was fine, but in hindsight I really didn’t like the reflection it painted of myself to the person I was communicating with and maybe caused hurt or frustration.

The most recent example was an email to a doctor. Nothing basically wrong with my content, but I had to think after his reply that I hoped I wasn’t frustrating him or questioning his wisdom. This really made me think about my feelings when I was writing, and I realized I was frustrated, worried and a little desperate, both with myself and what was going on in my body.

Not a good foundation, because my words came from that emotional base.

The Bible of course has a good deal to say about the tongue and our words:

Proverbs 11:9 “Evil words destroy one’s friends; wise discernment rescues the godly.”

Proverbs 11:12 “It is foolish to belittle a neighbor; a person with good sense remains silent.”

Proverbs 11:17 “Your own soul is nourished when you are kind, but you destroy yourself when you are cruel.”

Proverbs 15: 1 “A gentle answer turns away wrath, but hard words stir up anger.”

Proverbs 18:4 “A person’s words can be life-giving water; words of true wisdom are as refreshing as a bubbling brook.”

And of course most of James chapter 3 in regards to the tongue. The majority of a chapter of the Bible devoted to the destructive power of words!

Great! But, it goes deeper than that, and deeper is where I have been introspecting myself. A few quick questions to cut through the layers to get to the source:

Where do words come from? The brain.

Okay, what prompts the brain to create the words? Um, thought processes and emotions.

Hmmmm, what fuels those thought processes and emotions? Character.

Whoa, So basically who we are.

Who should be in charge of our character? God.

So this is a great (although be it uncomfortable) process to go through with the Lord when you find your words lacking, hurting, harsh, sarcastic, condescending, always being misunderstood, or falling short of kindness or clarity. In some cases just focusing on your recipient and not your agenda is all you need, but more often than not you need Jesus to take a magnifying glass to places in your heart you didn’t even know needed work. Trust me, there is no better heart surgeon than Jesus.

Being opened up is always uncomfortable, but having tumors removed is ALWAYS profitable.

❤️

Psalm 139:23-24

“Search me, O God, and know my heart! Try me and know my thoughts! And see if there be any grievous way in me, and lead me in the way everlasting!”

Psalm 51:10

“Create in me a clean heart, O God, and renew a right spirit within me”

For Those Who Judge Posting “Personal Problems”, And Why Some Put It All Out There….

Deep breath, here we go. This isn’t going to hit everyone the same way. We are as individual in how and what we communicate as our fingerprints, and that carries over into our perceptions of how and what others communicate as well.

Now I will start by saying this is not going to be a broad-spectrum discussion on various topics, because (obviously) there are things we should be private about (problems in a relationship with a partner, keeping a confidence, etc) but I will focus only on sharing/not sharing/over sharing as it relates to health and illness.

There is such a whirlwind of differing opinions when it comes to how open we (for purposes of this post I am referring to chronic illness sufferers) are with our struggles and symptoms and the emotional states we find ourselves in because of said struggles.

See prior posts: Judgment & Scrutiny Living With Chronic Illness

The Mighty: Why the Ill Post On Facebook

When You Are Put Down For Being Your Illness

The foundation for me as to why, is at its most basic stated in this quote and these verses:

“God never intended that we should suffer alone, that we should suffer for nothing. “~Joni Eareckson Tada

Joni’s Testimony Here about 50 yrs as a quadriplegic

“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we will be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. For just as the sufferings of Christ are ours in abundance, so also our comfort is abundant through Christ. But if we are afflicted, it is for your comfort and salvation; or if we are comforted, it is for your comfort, which is effective in the patient enduring of the same sufferings which we also suffer;”

‭‭2 Corinthians‬ ‭1:3-6‬ ‭

We are given many examples in the Bible how we are to bare each other’s burdens, share in each other’s suffering, comfort and come alongside those who are sick, hurting, broken….

When did it become an “unchristian” thing to be honest about what you are going through? Or when did it start meaning you lacked faith if you were suffering? If that is true let’s start scrutinizing and judging King David, the Apostle Saul, and well just about every writer and prophet in the Bible! (To say nothing of the entire New Testament!).

What if Joni had never shared her story? Never written? Was never honest about her suffering, but instead had just put on a brave face? I can guarantee she would not have a ministry, not have touched millions, and worst of all not fulfilled God’s calling on her life and His plan and purpose in her trials.

Have you ever read a biography about someone overcoming great difficulty? Were you inspired how they suffered and what they went through and yet kept going?

What about how much you were inspired by a person’s biography where everything went great their whole lives; lots of money, great health, everything went right in their lives….won every race and accomplished every goal? Yeah. Me either.

No not everyone is called to share their dark moments of the soul, or all the ways their bodies betray them on a daily basis, and that’s ok. But don’t judge the ones who are. The ones who share with purpose…to try and get help. To try and help others. To spread awareness. To invoke change.

True you may be “too close” to the person who has suddenly become a verbal geyser of health talk to see clearly why they do what they do; because you know who they were before, and make your own judgments as to their motives.

And I don’t know the truth in every situation, because there certainly are attention seekers out there… What I do know is that the vocal ones are changing the world one person and one community at a time. I thank God for the ones who have, and still help me, who post and blog and share. I learn from them. I am encouraged by them. I love forward in my own journey because of them.

And I also thank God that I have also been able to help others.

None of which would have been possible had we stayed silent.

I am far from perfect, I have over the years been confronted with a lot of my own ugliness; both what has sprung forth from a sick brain, and what is just apart of my fallen self that has needed weeding. That said, I would like to think that with Christ’s help I am here for the right reasons, I refuse to waste my suffering, and I will not stop being open and raw and real as long as God has me in that place, no matter what stage I’m at. And if I’m healed I will not forget or close the door to those who come behind me, who need to read a blog about how they are not alone and that others have walked the path before them.

Chasing down friends, a real world problem for a chronic lymie

I write a lot about the emotional and social aspects of having a chronic disease and the frustrations that come with it.

I know a BIGGIE with the chronically ill is the feeling of isolation and not being able to participate in normal activities, or at least not as many. Now before I continue there is a great spanse in the Lyme world from bed-ridden and unable to go out at all, to “functioning Lymie” who can maybe hold a job and get by but has limited energy for anything else.

I fall into the second category (I have lived through the first), where I can be social but it has to be carefully planned and very dependent on how I’m feeling and whether I’m working (same day as work usually doesn’t happen).

Oh and did I mention mornings? Lymies know about the morning toxic hangover and how hard it is to get moving in the AM. Which is why church is hard, Saturday morning breakfast get togethers or morning bible studies are out.

That said, I find I’m in a season of life where I (mostly) have to chase and pursue friends to get together. You see if I don’t attend the functions where everyone congregates and makes those “dates” together outside of said function, I’m kind of left having to be the electric communication stalker.

Now I’m not saying people don’t care, or that I don’t have some amazing friends that keep in good touch and are very caring, but there are also some who never make contact on their own, or maybe they say “yes we should get together” and then leave it hanging and never let me know what works for them. 

In the age of instant communication when everyone is always on their phones, how did it get to be so hard to communicate and get people to respond? Is it the whole country or is it worse in overpopulated/hyper-busy/rush rush rush areas like Western WA where I live? I mean come on; traffic alone here could keep people wanting to hide in their homes with the blinds closed and huddled in a corner. Driving 10 miles to meet a friend here could mean 40 minutes in traffic and taking your life in your own hands. 

Anway, life just seems to get more challenging with every pasing year, healthy or unhealthy. 

Those are my musings for today. 

The Judgement & Scrutiny Of Living With Chronic Illness 

(*disclaimer at the bottom of article)
Judgment. 

Scrutiny.

 Those words immediately evoke feelings of negativity. Living with chronic illness is negative and difficult in itself, but have you ever stopped to think that almost every person batting a chronic illness also gets “insult added to injury” (literally) by being judged and scrutinized in everything they do?….. What they post on social media, every choice they make, every event they attend or don’t attend, everything they eat and every purchase they make? Yes. This is a huge part of living with chronic illness. 
   Can you imagine suffering from a condition and all of a sudden even “normal” activities and decisions come under the watchful and judgmental eye of everyone you know?
What do I mean? 
Example: “Shelley” suffers from chronic Lyme. All her friends and family know this. They know treatments are expensive and Shelley spends a lot of time at the doctor. Shelley also says no to a lot of family functions and activities with friends. Shelley also shares her struggles on social media and everyone knows she is struggling financially as well due to all her medical expenses. Some of Shelley’s family are very negative; they knew Shelley when she was active and vibrant and can’t understand how this sickness seems to go on and on without end. They think her posts about illness are attention-getting and that Shelley is needy, especially being that she is single and they think therefore she is trying to get sympathy. They think she is pathetic. Some of them let her know and express their anger. Some of them no longer speak to her at all.
Shelley also feels like she can’t win when it comes to socializing….
(NO) When Shelley says no to an event or dinner (or has to leave early or rest in the middle):
People think Shelley is being a drama queen again, or lazy, or being anti-social, etc. 
“She always says no so why bother asking”
“She is so self-absorbed with her problems. If she just got out more and acted normal she would feel better”
“Sickness has become Shelley’s identity. If she just stopped owning it she wouldn’t be so sick” 
“Shelley is not as sick as she thinks she is. Lyme is an excuse”
“Shelley has some kind of social disorder and is using sickness as an excuse”
“There she goes again, lying on the couch in the middle of a party. Apparently she wasn’t getting enough attention…”
(YES) When Shelley says yes to an event, or dinner: People think
“how can she be sick in bed yesterday and out today looking normal today?”
“She is such a liar, she said she couldn’t go out his morning and there she is tonight out with friends”
“She must be getting better, finally this Lyme thing is going away”
“You look good! You look healthy, you must be better”
“How can she afford to go out when she was just posting her Gofundme yesterday?”
“All this posting on social media about being sick, and yet when I see her she looks fine”
“Should she be eating that?”

You see I am Shelley. If you are ill and reading this, you are Shelley. And I know dozens and dozens of Shelleys that have the same experiences. 
Most people don’t think twice about going out to eat, taking vacations, hanging with friends, going to movies, buying a pair of shoes…

But when you deal with chronic illness things are a little different. Have you ever considered how much judgment someone who is sick receives? And this is on top of all the physical, emotional, mental, spiritual and financial suffering. 
That’s why I write. Because most judgment comes from naivety and simply not understanding. 
I have to deeply think before I post anything regarding my illness; TMI? Who’s my audience? Sharing info with fellow Lymies versus relatives that are going to roll their eyes at another health post?

Am I going to get negative backlash?

Are people going to get the wrong idea?
I also think twice before I post anything about going out, being with friends, or anything that has to do with spending money….. 

You see guy can buy new shoes if you need them without a second thought. But if I do I have to assess who might judge me knowing that I struggle financially. See what I mean? And I also don’t want to hurt that friend that I said no to yesterday when I felt super fatigued when they see me out with someone today because I rested and feel a little better.

I also struggle with guilt and and moral questions whenever I do something fun or spend a little money. Am I “allowed” to have fun? Can I justify a purchase for myself? Even though I am. It by any means extravagant (I rarely go shopping, buy clothes, and almost never eat out) I feel funny when I do and feel I have to answer for myself to everyone I know. 
Conclusion. 

This isn’t a perfect essay, and I didnt touch on a lot (including judgment and negativity from the mainstream medical community that doesn’t understand certain chronic illnesses), but there are tons of bloggers out there and they are doing a great job being a voice for this community. All we can do is try our best, and have an extra dose of grace as we raise awareness to those who would judge us. 
*Please note that this essay is on the topic of judgment and scrutiny; There are a LOT of kind and understanding people who do take the time to learn, ask questions, talk and give support. Thank you all my friends and family that fall in this category. 💚

  

The Morning After (Payday)… Fun Isn’t Free

I did something yesterday, oh yes I did. Something normal, something fun.

I treated my sister for her birthday to go see Coldplay in concert. Firstly I had to make the decision how wise it was for both of us for two reasons; financially being that money is tight and medical bills are high, and whether I could justify using some of my personal savings on an extravagant birthday present. Second being that we both deal with chronic illness I had to weigh how much we would be affected by a long night out and take a gamble (being that I purchased tickets ahead of time) whether we would both be well enough to go when the event came. 

I went ahead and did it because Coldplay was here on the weekend right before my sister’s birthday (which seemed fortuitous) and she loves them enough I figured we would make it happen no matter how we were feeling.

We got nosebleed tickets (hey closer tickets were outrageous!), but it turned out fine because it was a great venue complete with fireworks, laser show, and audience armbands that lit up. It was fun.

My sister is happy and grateful and this is one the nicer gifts I’ve been able to get her. Thankfully also we are both having slightly better days with health the last couple weeks, meaning we can manage a bit more.

But, the reason I’m writing this is because this is a chronic illness blog, and as fellow sufferers know after fun comes….. pay day/days. 

It began actually even at the concert last night; I started feeling tired, and even in the middle of something fun I was enjoying I started wishing I could be home in bed knowing that even after this thing is over there would be a long walk to the car, sitting in traffic, and a long drive home.


This morning as I lay in bed writing this my entire body hurts..a lot. I’m swollen and puffy and completely wiped. Not only do I have the deep aching pain in every joint but I also have the deep tissue burning pain that goes with the autoimmune (Mast Cell/histamine) reactions of having some different foods yesterday.

Yes, this is “Pay Day”, and I know there will be more than one of them and I need to be careful the rest of the week.

So, is it worth it? I think so. Simply because I do things so seldom, and it feels good to be more normal once and a while; it gives me hope that one day the normal days will multiply and I can handle more, maybe even… gasp, having more than one activity on a weekend. We shall see.

For today though I’m glad my sister had something special for her birthday, even though she will be having her own pay days to follow. I will rest, recoup, detox, and try and make it to something tonight I promised some friends I would attend… yes, I am going to attempt two things in two days. Prayers appreciated