Tell Someone You Care

A geriatrician holds the hand of an elderly woman with arthritis.

The chronically ill walk a fine line between honesty and duplicity.

Loving, well-intentioned friends and acquaintances frequently ask us how we’re doing. But “How are you?” is typically used as a social greeting in the same category as “Good to see you.” and “How are the kids?”

Most people who ask the question “How are you?” don’t have the time or interest, at least at that moment, for people to talk about how they’re truly feeling.

We may mean it when we say those words, but hearing a literal answer to the literal question is usually not our intent when we ask, right?

Which can feel disheartening to the chronically ill person, since at any moment in time we’re probably not feeling fine. In fact, we’ve learned to push through our pain if we want to interact with family and friends.

Feeling “fine” is often a memory the chronically ill grieve.

In many ways, our lives are not like the lives of our healthy friends and family. We do not have the same choices. Illness may have taken a toll on our finances and career. I may have eroded family relationships. Living with chronic illness means dealing with feelings and circumstances that healthy people are often unaware of. Talking about how we truly feel can sound like complaining, and if we tell people how we really feel every time we feel that way (which is often awful and exhausted every day), we run the risk of sounding like ungrateful, unspiritual wimps and whiners.

So we choose something polite to say, which is usually “Fine.” And we smile and push away resentment for the question. Especially if we’ve been saying “fine” for years when we’re really not so very NOT fine. Besides, if we’re or a social event, we’ve come to enjoy the event and the people. We don’t want to be defined by our illness.

If we’re lucky, we have friends who know what living with illness looks like for us. They probe beneath the surface because they want to help lift the burden, whatever it may be for us. They understand that compassion is an expression of love. They understand that suffering and pain are not to be borne alone.

I appreciate one dear woman who sits near me at church on Sundays. I don’t know her well. She always asks me the dreaded “How are you?” question. Then she tilts her head and follows it with one word: “Really? How are you really?”

The simple question “Really?” tells me she cares about more than a superficial answer.

I don’t go into detail, but I’m always honest when I answer. “It’s been a rough week. My walking has been pretty rough.” “I’m having increasing cramping and pain in my legs.” “My fatigue has really put me down this week.”

She always takes my hands and promises to pray. In less than a minute she has reached out and helped bear a burden.

I’m grateful for this woman who cares enough to ask me for more than a polite answer. It’s not necessary for everyone to do what she does every time they approach someone with chronic illness or who may be suffering in other ways, but it means a lot to know that people will pause and ask about our pain.

Last summer I went to our local zoo with my son’s family, who had come to visit. I knew I couldn’t walk the zoo, so I rented a motorized scooter. Even though I was using a scooter, I was exhausted after several hours and needed to find a place to cool off and rest. I drove the scooter toward the front of the zoo and pulled off under a tree to rest. People passed by me by the hundreds as they headed toward the exit. After I’d been sitting for about thirty minutes or so, a young black man approached me with a concerned look on his face.

“Ma’am, can I help you with anything? Are you all right? Can I get you something? Do you need assistance?”

I reassured him that I was waiting for my family and thanked him. But for more than a year, I’ve pondered what drove that one person to approach me and ask if I needed help. What gave this young man eyes of compassion when hundreds of other people never considered that a lone, obviously exhausted handicapped woman who appeared to be looking for someone might need help?

Do we see the crowd, or do we look for those in need in a crowd?

Who’s in need in your crowd? How can you help the sick and hurting in your community? Perhaps you could bring a meal, grocery shop, do yard work, run to the post office, watch their favorite TV show/athletic event with them, fix their car, help with home maintenance (no one in this house can change light bulbs), purchase their favorite fruit or flowers, or simply stop by for a visit.

Ask God to place one or two people in your life to occasionally look in the eye and ask “Really? You know, it’s easy to look good on the outside and still hurt like crazy on the inside.”

In body, soul, or spirit.

Who has asked you about how you are? What has it meant to you? Who have you helped to encourage and how?

 

One woman who

Four Reasons Why I Don’t Blame God

Dishwasher

Yesterday my dishswasher died.

I wasn’t surprised. As near as I can figure, my ancient Whirlpool was about the same age as Betty White but without the classic good looks. Because we’re frugal (another word for usually broke) my husband Dan and I never buy new appliances until they gasp, writhe, and spill their guts all over some part of our house.

Dan made a valiant attempt to fix our Whirlpool when it stopped whirling and the water only pooled in a murky blue sludge at the bottom of the machine. He ended up with a cut finger that bled through double bandages for three days while I worried that he’d need some new form of tetanus shot.

Long story short, no, his bloody attempt to fix the dishwasher was less than a success.

So we’ve been washing dishes in our household. Dishwashing is a tricky task to try to manage while holding cane and attempting to ignore the cramping in your legs and back.

I’ll admit I was a discouraged when I realized one more thing in our house was broken (not counting my body).

But the feeling passed. I don’t blame God for the demise of my dishwasher, and I haven’t blamed him for my health problems, relationship problems, financial problems, or even the abuse people I love and I have experienced in our past.

Why?

1. God created a perfect world for us, and we messed it up.

God created a perfect world and free access to Himself. Adam and Eve were given freedom of choice and chose sin. They chose to put themselves above God’s interests and best for them, and humanity has followed in their footsteps every day since. We are sinners by birth, choice, and generational curse.

We are responsible for the hurt, abuse, evil, and lack of stewardship of God’s creation that messed up the world.  

So when something breaks, don’t blame God. When someone hurts you, don’t blame God. He gives us the freedom to cooperate with His divine, perfect plans or not.

2. I can’t expect justice or fairness in this world. 

Scripture is clear that since Satan’s instigation of evil on earth, he is the “god” or “ruler” of this earth:  “Now is the judgment of this world; now will the ruler of this world be cast out” (John 14:30). His limited power is because of God’s permission, and for now Bad often wins over good. But Satan was defeated by Jesus’ victory on the cross. The final victory over sin and evil belongs to Him.

For this reason, I don’t have to fight for my rights here on earth. I don’t have to worry about getting what I think I deserve. Jesus has already won those things for me. I’ll even have the opportunity to crush Satan’s neck beneath our feet one day (Romans 16:20).

3. I must be committed to perspective.

This means, above all, a biblical perspective–aligning my attitude and desires with Scripture. Sure, I want a new dishwasher, and I’d really like one now. I can even conjure up lots of reasons why I deserve one (so-and-so has one, I’ve had a tough year, I have a stinky chronic illness, and media tells me I won’t be happy until I have what I want).

But really people, that’s a load of horse pucky. The truth is, Dan and I live on a budget, what others have has nothing to do with what I need, and I need to be a good steward of my resources.

Needs and desires are two different things. 

My son-in-law spent years as an abandoned child raising himself in a Jamaican jungle. Soon after authorities found him when he was eight, he was struck by a truck and taken to a public hospital where he was left without an advocate in despicable conditions. Yet he grew up to earn multiple degrees and become a caring husband and father.

When asked to go out for an to a movie in the U.S. that will cost $40, not counting gas and dinner, he looks at the expenditure differently than Americans. He recognizes that the cost of a single movie represents many meals to friends and relatives back in Jamaica. Or the price of school uniforms and shoes for children hoping to go to school.

My son-in-law has a different perspective on needs and desires, and his values shape his choices.

4, Our values as Christians must shape our choices. 

  • Gratitude that compels giving
  • Sacrifice that compels service.
  • Love that compels mercy.
  • Grace that compels beauty of spirit.

So today I’ll head to the sink to wash the dishes. I’ll look out the window at the beautiful field behind my house. I’ll listen to a little worship music or maybe pray for some of you. Dishwasher or no dishwasher, it will be a good day.

What about you? What advice can you share with us about not blaming God?

 

Gratitude in Suffering

ShellySickFace

For more than fifteen years, I’ve experienced dizziness, nausea, pain, headaches, weakness, along with dozens of other symptoms. I’ve seen well over fifty doctors in hospitals all over the country. I’ve developed multiple lesions in my brain stem that have rendered me unable to walk, sit up, or stand. This past December I had brain surgery.

Even the doctors at Mayo Clinic declared me to be a neurological puzzle.

This week I received a diagnosis. The emotion was overwhelming.

I couldn’t have made it through these years of frustration without the support of many people.

People who never wavered or stepped away from my side for a moment. People who never questioned the reality of my symptoms. People who didn’t shame me for slowing down and stepping back.

People who sat beside me, wept with me, held my hand, cleaned up my vomit, brought meals, helped with our bills, prayed with us, asked the right questions at the right times and were sensitive enough to know when silence was a gift.

Friends who did not judge, but allowed me and continue to allow me to work through sorrow, grief, confusion, pain, and suffering as a lifetime journey with illness.

  • Thank you to Dan, who supported me every moment and never wavered. You are the most amazing husband in the world.
  • Thank you to my children and their spouses, who loved and supported me unflinchingly.
  • Thank you to my dear friend Wanda, who has helped with household chores, cooking, and sat beside me in the pain.
  • Thank you to those who have sacrificed, given, prayed, cooked, and done so much to support me. Thank you, Blythefield family. I don’t have words to express my gratitude for my church.

This journey has been hard. I have cried many tears, and I’m sure there will be more ahead. At times I have felt abandoned, angry, and confused. Even Jesus cried out to God in His suffering. Faith doesn’t require emotionless stoicism.

God’s goodness still overwhelms me.

My mind will never be able to comprehend His goodness and love. Love so great that He allowed all of humanity–including me–to heap our sins upon His Son. Love so intimate that He is with me snd never leaves my side in my suffering.

I pray I never forget to be grateful, that I never cease to see the Love that envelopes my life, even in sickness, suffering, and pain. And that I never stop pointing people to God’s goodness and greatness.

But gratitude does not come automatically–especially when everything inside us screams out, “Why me?”

  • So I choose my focus.I must stay grounded in the Word of God by choice, not because my emotions lead me there or my body wants to get up earlier in the morning for my devotional time. This choice requires discipline and commitment.
  • I choose my attitude. I check my self-talk and stinkin’ thinking, then repent. I’ve chosen a lifestyle of repentance that is followed by walking in grace. The two are linked in a daily cycle.
  • I choose my words. I’m called to look like Jesus to those around me–the phlebotomist who is trying for the sixth time to place an IV in my painful arm or the telemarketer who woke me up. I also choose the self-talk I allow because my thoughts are the control center of my mind and heart.

 

What about you? How do you find gratitude in suffering? 

My Love-Hate Relationship with Waiting

make today countIt’s been eight months since I walked through emergency room doors and asked for an MRI of my brain.

I knew something was up. It was the same old feeling I’d had in 1999 when I knew something was seriously wrong with my head. And I was right.

My MRI showed a large SOMETHING.

The problem has been figuring out what it is. My diagnoses have ranged from an aggressive and deadly form of tumor, to multiple sclerosis, and finally to a stroke or bleed in my brain stem.

Over the course of eight months, I’ve been seen by more than seven doctors in multiple hospitals. Every doctor has overturned the diagnosis of the doctor before them.

In a nutshell, I have found this experience frustrating.

Mostly because I haven’t had a treatment plan or a way of determining which of my ever-changing symptoms are important and which are simply oddities.

Illness is frustrating. And exhausting. And often stirs misunderstanding.

Over the past eight months, I’ve come to hate a lot of things about waiting.

  • Waiting can suck me into focusing on the injustices of the world (or at least my perception of injustice), Like why I’ve been billed near six figures for so many conflicting diagnoses. Pain so easily shifts our focus away from others and onto ourselves. And while it’s all right to make ourselves a priority, it’s not right to make ourselves the focal point from which all things are measured.
  • Waiting can lure me into wanting to demand my rights. After all, aren’t I entitled to my freedom? Actually, I’m entitled to nothing except to love mercy, to seek justice (which isn’t the same as demanding my rights), to walk humbly with God and people.
  • Waiting can narrow my vision. The longer I wait, the more I am tempted to see only my narrow slice of life and magnify my seeming needs. Waiting can take my eyes off God and others as I grow increasingly self-focused.
  • Waiting can pull me into isolation.Exhausted by circumstances, I may choose to withdraw or simply slip into isolation unaware.
  • Waiting can stir me to anger. The longer I look at circumstances and other people, the more easily I become convinced that I’m getting the short end of the stick. I convince myself that God doesn’t care enough to help me, and my anger feeds my attitude, which feeds my anger, in a vicious cycle.

Over the past eight months, I’ve also learned to appreciate a lot of things about waiting. 

  • Waiting can broaden my vision for the injustices of the world.If we allow it to, our pain can shift our attention to those suffering in similar situations–or in worse situations. I’ve found that ministering to others over these past months has been one of the most restorative things I’ve done for myself.
  • Waiting offers me opportunities to advocate for others, based upon what I’ve learned.Fifty percent of the U.S. population suffers with chronic illness. We often don’t take the time to understand what it takes for these people and their caregivers to manage life. I recently went to the zoo with my family for an outing. The heat and physical exertion overwhelmed me, and I pulled my scooter under a tree to rest while my husband went to get me something to drink. Hundreds of people passed me without saying a word. Except for one young father and son who stopped to see if I was all right. Why? Because they were looking past themselves and the crowd for people in need.
  • I’ve learned that waiting can enlarge my vision for God and others. Waiting can draw me toward God and others if I focus on his character and his goodness and his faithfulness. As I focus on him, other elements of my life and purpose come into focus, including the way I see others and my heart to know and serve them.Waiting can fill me with grace. The more I focus on the goodness of God, the more I see how blessed I am, how loved I am, and how secure I am. I become increasingly convinced that I am never out of God’s care, and my gratitude explodes into a grace-filled, purpose-driven life.
  • Waiting can fill me with grace. The more I focus on the goodness of God, the more I see how blessed I am, how loved I am, and how secure I am. I become increasingly convinced that I am never out of God’s care, and my gratitude explodes into a grace-filled, purpose-driven life.

Yes, I’ve been waiting for eight months for a diagnosis, but I get to choose where I place my eyes, my heart, and my faith.

But God’s goodness, mercy, and grace in my life haven’t dimished for a moment.

 

The Grief of Chronic Illness

WorshipatBHBC

I love going to church.

L-O-V-E with capital letters and exclamation points. Not because our church is perfect, but because I love being surrounded by God’s people.

His bride.

After all, the church was God’s idea, and it’s not like he didn’t know we’d all be imperfect.

All of us.

Yet still he chose to partner with US–self-centered, fickle, and prideful as we are–to change the world.

But since I’ve become chronically ill, going to church has changed for me. And it saddens me.

You see, I’m a people person. A talker. A connector. The lady who had to be shooed out of the auditorium so the maintenance staff could lock up.

I love worship–standing with my hands raised and singing harmonies–sweet or off-key–with my brothers and sisters.

I’m addicted to taking notes and listening for life connections. I dedicate my books to my pastors because they inspire me with my best writing ideas.

But illness has made church a different experience for me.

My attendance has dropped significantly because of pain, fatigue, and other disease-related complications.

Simply dressing for church, driving, and navigating my way to my seat can exhaust me. I often don’t have the strength to sing, much less stand.The chairs in our auditorium don’t have arms, so I lean on my husband or my cane to ease the aching in my arms. I typically “ration” my energy for note-taking, which can be difficult because of vision complications and migraines.

I often pray my way through the service for the most basic of reasons. My illness causes bladder problems, and the restroom is too far for me to walk to with my cane.

By the time the service has ended, both my bursting bladder and aching body are screaming. Dan and I usually attempt our exit during the final prayer because I fear that a prolonged conversation with a well-meaning friend could mean my demise.

But even though church is a challenge for me, I’d rather be uncomfortable there than more comfortable at home.

Why?

  • “Surely the presence of the Lord is in this place. I can feel His mighty power and His grace.”
  • I can hear the Word of God openly preached–a freedom that may be gone before my grandchildren are grown.
  • I’m inspired by the stories of my brothers and sisters who are also struggling in a sin-cursed world.
  • Because the church is God’s idea, and I’m privileged to be part of his story.
  • Because my story is one thread in the tapestry of love in my local body.
  • Because my church needs me and I need them.

am allowed to grieve for my losses and my pain. God grieves with me. But I also rejoice for life experience that keeps my eyes fixed on the cross. And in the grief of chronic illness, there’s no sweeter place to be than in my church.

Has suffering changed YOUR experience of church or worship? We’d love to hear your story.

 

Chronic Illness: Things I Miss

I

Photo Credit: personal.psu.edu

Photo Credit: personal.psu.edu

t’s been four months since my brain surgery on December 30, 2014. I’m actually surprised I can remember that date without asking someone. My life has changed a lot in the past few months. I’d like to share a few things I miss. I hope it will help bring understanding to those who have friends with chronic illness and/or brain illness.

1. I miss my memory.

I forget things easily. It can be embarrassing, and I can never predict when it will happen or what kinds of things I’ll forget.

Like how to count change at the grocery store.

The name of an old friend.

How to use my phone.

I’m not sure if my memory loss is related to my illness, my brain surgery, or other factors like exhaustion and medications. Doctors haven’t given me a good answer, which is disconcerting. So if you meet me somewhere and I don’t refer to you by name, don’t be offended, Bub.

2. I miss eating.

Not that I can’t eat, but a lot of things about eating have changed.

My mouth hurts all the time. This is because the lesion in my brain stem is pressing on nerves in my face.

Foods with texture can be uncomfortable and difficult to eat. For instance, salad is a challenge. And rice and chips and crackers. It’s also difficult for me to eat and carry on a conversation because I need to focus on swallowing and where food is in my mouth.

Because portions of my mouth and the back of my throat are numb, I choke all the time. I choke when I’m not eating, and the choking makes me cough. So I’ve become a bit picky about the kinds of food that feels “safe” for me to eat and doesn’t hurt my mouth.

3. I miss walking. 

I am able to walk around my small house. And I do walk through Dollar General. But larger spaces are a challenge for me. I’m unable to “walk the mall” or do the kinds of walking others do.

I plan my activities around the limited strength and function of my legs. I’m on a plan to increase my endurance and get on my treadmill as often as possible. But, unfortunately, dizziness and nausea are part of life on a regular basis for me. When they strike, I walk as little as possible and lie on the couch to help keep my tummy under control.

Often my legs are “gone” by one or two in the afternoon. Apparently they hike off somewhere on their own and leave me behind on the couch.

4. I miss church. 

I go as often as possible, but my illness makes my life unpredictable.

I’ve missed the last three weeks, and I’ve cried about it. Yep. Cried. I LOVE my church and being with the people there. We’re an army for Jesus, and I need to see my friends’ faces and be reminded of their stories.

I need to worship.

I need to be broken. Encouraged. Blessed. Humbled. Given the privilege and to express my gratitude.

5. I miss life. Simple things like…

Any activity that involves walking more than twenty-five yards.

Going out for lunch or coffee.

Seeing friends I haven’t laid eyes on in months.

Attending events after 7pm. (This has meant not seeing many close friends since before Christmas.)

Anything that happens after 8pm.

This is NOT a complaint list, but a description of some of the ways life has changed and the things I grieve.

If you know someone with chronic illness or who has experienced personal loss, they grieve every day of their lives. This does NOT mean they do not have joy or trust God. We are allowed to say that challenges are hard and bring that pain to God.

Pray for them. Show compassion and curiosity. But most of all, consider how God might be calling you to enter into their story. 

A great resource for families, caregivers, and friends of those living with mental illness, offered free of charge from the National Alliance on Mental Illness, the Family to Family 12-week educational course.

If you or a loved one has experienced chronic illness or loss, what resources or assistance has helped you?

Six Ways to Help the Hurting

LamentMost of us want to help friends who are suffering and grieving. The problem is, we often struggle to know what to say or do. And so we say things that make sense to us.

The problem is that we’ve probably never experienced the pain our friend is going through and don’t have a clue what their suffering feels like.

Most people who are hurting can tell horrifying stories about the insensitive and sometimes cruel ways people have responded to their pain. So what can you do?

1. Open lines of communication. 

Send a note. Mail a card. Express your love and concern without offering advice and let the person know that you care.

2. Be present.

Show up–physically and through other means. Keep the lines of communications open. People who are hurting, grieving, and suffering feel isolated and alone. It’s common for people to walk alongside them for a few weeks or months but seldom for the long haul, which could mean years or even a lifetime (imagine a widow raising children or someone diagnosed with chronic illness–their grief will overshadow the remainder of their life).

3. Listen with compassion and curiosity.

Don’t provide easy answers and solutions. Ask how you can show support. Don’t quote Scripture–your friend most likely is already clinging to those verses in ways you can’t understand, and they’ll sound trite. Your goal should be to listen 80% of the time and to speak 20%.

You may want to ask them what they miss most, grieve most, fear most. Allow them to express their memories and share their story.

4. Don’t be afraid of emotion and tears.

Many things are worth sorrow and tears. If your friend cries, don’t be afraid to cry with them. And don’t feel pressured into saying something intended to be positive–for instance, “Your husband’s in a better place” or “You can always have another baby” or “At least you look good.”

5. Ask your friend what support looks like to them and offer to help.

Be specific. Offer specific kinds of help–financial, home maintenance, errands/shopping, vehicle maintenance, etc. Or perhaps you can help with party planning for children or decorations for the holidays.

I live with chronic illness, and I’m still learning how to get dinner on the table at night. By 2:00 in the afternoon, it’s difficult for me to walk. But many people assume that because I’m diagnosed and under treatment that I no longer need help. But I’m not alone–many people with chronic illness live with challenges that healthy people do not understand–and those challenges can be isolating and discouraging.

6. Don’t stop checking in.

Dr. Benjamin Mast has written an insightful book titled Second Forgetting (Zondervan 2014). “Second forgetting reflects a spiritual forgetting experienced not only by the person with Alzheimer’s [or other illnesses or who has suffered grief or wounding], but more broadly by their family, friends, and even the church who seeks to care for them.” Birthdays and anniversaries are especially painful for those who have experienced loss.

I was brokenhearted when I was too ill to attend Easter services this past week. My body simply wouldn’t cooperate. And I was grieving the fact that I’d missed out on Christmas and New Year’s, due to emergency brain surgery. I’d looked forward to being with my church family at East with enormous anticipation.

Instead, I remained at home–ill.So I was particularly grieved when a dear friend of mine–a young widow–texted me late that night to tell me her heartache at others’ expectations about how she should be grieving.

Supporting others is a lifetime role. It does not involve placing our expectations upon them but, instead, being Jesus’ hands of mercy to them.

We always help the hurting most when we display gratitude and grace in our own lives as we remember God’s faithfulness, His presence, and His promises in OUR lives. We do not have to preach–living faithfully and loving others gracefully will point them to hope.

Four Ways Chronic Illness Tempts Me to Lie

 

Photo Credit: PlayBuzz.com

Photo Credit: PlayBuzz.com

My 93-year-old dad calls me every day around six at night. Dad has Asberger’s, and to him the world is black and white.

To Dad, everything should have an answer that fits inside a box–especially my illness.

Except that it doesn’t. After three months, doctors don’t have a diagnosis for The Thing in My Brain Stem. Even docs at Mayo Clinic are puzzled.

Dad calls every night with the same questions:

“Are you better?” (Real answer: No.)

“Have they figured out what’s wrong with you?” (Real answer: No.)

“Why not?” (Real answer: I wish I knew. Cuz it’s something weird.)

I HATE upsetting my dad. I don’t want to tell him how sick I really am. He doesn’t have the emotional wiring to understand what’s going on. And so I tell him as little as possible.

The same is true with some of many people. I divide them into two categories: Friends Who Want to Know About YOU and Friends Who See You in a Box.

Friends Who Want to Know About You

  • want to know how you really feel and know that how you look can be irrelevant and misleading.
  • will make time for you no matter how busy they are.
  • will accommodate your needs, your pain, your limitations.
  • will want to know what support looks like to you.

Friends Who See You in a Box

  • ask as few questions as possible.
  • make time for you at their convenience.
  • feel uncomfortable talking about illness, pain, and limitations.
  • define “support” according to their own limited view of need and illness.

Four Ways Chronic Illness Temps Me to Lie

1. I answer superficial questions with superficial answers. It’s easy to tell when someone is asking a question to be polite or socially correct, and it’s easy to emotionally withdraw and answer with less than the truth.

2I can tell when people are growing frustrated hearing the same answers. It’s been three months since doctors first discovered my brain wasn’t quite right–or something like that. By now friends and family are well beyond wanting to hear the same answers for my pain and symptoms. But the truth is the truth.

3. People really don’t care that much. They say they do, but they don’t. Hey folks, call, text, post a comment, send a card, make a call, Skype, IM, or do something. Don’t say you care–your actions say it all. So after months of silence or superficialities, I step back, but I can’t bring myself to say the words out loud.

4. I smile when I don’t mean it. Because it makes other people feel feel more comfortable.

 

What about YOU? Has chronic illness tempted you to lie to others? Why? How do you cope?

The Blessings in Chronic Illness

Second Day of Infusion Therapy

Second Day of Infusion Therapy

A lot of people seem to regard illness as something like curse–something that we need to move past as quickly as possible so we can get to Victory. Overcoming.

And as someone who’s suffered through brain surgery with a diagnosis of glioma, then demylenating lesion and an Inoperable Walnut-Sized Thing in my brain stem, I can tell you that I don’t much like being sick. I’ve felt downright rotten for three months now, and I still don’t have a diagnosis.

So don’t get me wrong. I’m a fan of healing, and I believe God heals.

I just don’t believe God’s plan is to heal everyone all the time.

  • God uses people with “street creds” in hospitals, clinics, and other medical settings to talk about hope when life hurts. Really, really hurts. I mean, like when you get a craniotomy for Christmas. And all your IV sites explode. And even Mayo Clinic docs can’t figure our what’s going on inside your head.

We live in a messed up world where sickness and disease are part of life. And yeah, I know the verse that tells me that by Jesus stripes I’m healed. I believe that verse is true..

Every good thing I experience in life comes because of Jesus’ redemption for me. I just don’t think that as long as I’m living in the muck and mire of this earth, I get a free pass on suffering. I believe I’m actually called to SHARE in Jesus’ sufferings.

  • As I work through my pain and frustration, I AM showing people what victory looks like. I’m showing them what “overcoming” means on a day-to-day basis. 

That doesn’t mean I’m always singing songs. Pain hurts. Jesus shed real blood for us. He cried in real agony for us. He suffered. I’m called to take my my cross and follow him. If he chooses to heal me, I’ll take it–gladly. If I live for the next thirty years with chronic illness like millions of believers and nonbelievers in this nation every day, I will do it with as much gratitude and grace as I can muster, with the Spirit’s help.

  • Victory doesn’t depend on healing in the here and now. It means embracing God’s goodness in the here and now, no matter the pain.

  • Embracing God’s goodness in pain means learning more about God–snuggling into his character, knowing him more, trusting him more, wherever he takes us. 

What about YOU? How have you embraced God’s goodness in your pain?

Personal Medical Update

Second Day of Infusion Therapy

Second Day of Infusion Therapy

THAT WAS THEN

In 1999, after visiting three hospital ERs for nausea, vomiting, dizziness, and tinging in my face, I was diagnosed with a nickel-sized demylenating lesion near and actually in my brain stem. (Nerves are covered with a protective myelin coating, and when that coating comes off, inflammation is produced in the surrounding tissue, causing a “lesion” or spot, which is NOT a tumor.)

My condition was considered inoperable. A number of doctors at various hospitals and finally at Harper Hospital and Detroit Medical Center finally determined that it was a demylenating lesion and treated it with a burst and taper of steroids that shrunk it immensely, giving me back my life (for a time I was unable to walk or care for myself in any way, and my vision was double. I could do nothing but lie still in an effort to avoid unrelenting vomiting.)

The steroid treatment was dangerous but highly successful. For fifteen years, I’ve lived with MS-like symptoms but have managed life quite well, traveling, speaking, consulting, and writing.

THIS IS NOW

Many of you already know that just before Christmas I went to my family doctor because I was experiencing pain and tinging on the left side of my face. It felt to me as if a virus was traveling up my trigeminal nerve in my face. The pain was quite annoying. Actually, it was severe.

My doctor gave me an anti-viral medication but cautioned me that I would probably need to visit the ER for further testing. Within 48 hours, I acted on that advice. I felt truly unwell, and I’d been experiencing extreme fatigue for months, as well as other symptoms that were reminiscent of my episode in 1999 that had landed me in the hospital.

Doctors did, in fact, find another nickel-sized lesion in the identical location in my brain. They diagnosed it as a glioma–a very insidious diagnosis, and scheduled me for a craniotomy and resection in order to remove as much of the lesion as possible for biopsy.

They were able to remove 20% of it–the other 80% was too deeply in the pons of my brain and too dangerous to get to.

Nearly a month later, I’m still without a solid diagnosis. Docs have determined the lesion is demyelinating and NOT a glioma, which is hugely positive. But my biopsy, which was sent to Mayo Clinic, was inclusive for a specific diagnosis–for instance, MS, which is a specific demylelinating disease.

So where does this leave me?

1. My neurologist has referred me to Mayo Clinic for a second opinion.

2. In the meantime, I am undergoing steroid infusion therapy for five days, in an effort to reduct the inflammation and painful trigeminal neuralgia being caused in my face.

3. I am undergoing further tests–a Visually Evoked Potential, a thoracic MRI, and possibly a spinal tap. I am also being referred to a hematologist because of elevated protein in my blood.

4. Waiting on God, as we make preparations for a trip to Mayo Clinic in the dead of winter.

5. We are also juggling my medical trips with Dan’s and Wanda’s which is quite a challenge, given our combined medical challenges.

6. Leaning into the faithfulness of God and his unchanging goodness.

7. Learning new things about grace, pain, stillness, suffering, silence, change, and God’s love in the places we often fear most. He mercies are new every morning. This is not easy, but why would it be? I do not discount the challenge, but I embrace my only HOPE in this place.

What about you? In what ways have you found new mercy and grace in the hard places and suffering?