Category Archives: Chronic Illness

Our Privilege Is Showing

I have a client who has been dealing with chronic pain and spinal issues ever since I started working with her over two years ago. Approximately 7 months ago, she went in for an injection to reduce inflammation and pain in her cervical spine (the medical description of what they did is beyond most of us, so I’m going to skip that.)

To make a long story short, things didn’t go well. Somehow, they injured a nerve during the injection, and my client noticed immediately that she was unable to use her right hand; by that evening my client was in the ICU receiving huge amounts of medications to elevate her blood pressure so that they could maintain blood flow in her spinal column.  She lived through the ordeal, but was left with excruciating pain in her left arm and very little function in her left hand.  The muscles in her hand are wasting, she can’t move her fingers very much and cannot use the hand for anything more than a paperweight. She can’t tie her own shoes, pull up and button her own pants, or pick up anything that requires two hands. She struggles with simple things like showering and getting dressed, and it’s almost impossible to do the things that would allow her to take care of her family.  Worst of all is the constant searing pain in her left arm that increases any time she puts any pressure on her left hand. Physical therapy is so agonizingly painful that she cannot eat before she goes to therapy or she vomits.

Sounds awful doesn’t it? Aren’t you glad it isn’t you? Me too.  Sadly instead of giving her a place to share her emotions and honestly talk about her agony and suffering, friends, family, and even her doctors all say the same thing to her:

“Aren’t you glad it isn’t your right arm?”

Well…yes, she is grateful that she is still able to sign a check, or write a note to another person. She is grateful that her dominant arm wasn’t impacted.

But how is that statement supposed to be comforting to her?  Imagine what it would be like if I lit your left arm on fire and it had to stay on fire for the remainder of today, just today…not 7 months of agony, like my client.  Would you welcome people saying “Aren’t you glad it isn’t your right arm?”

I’ll bet not. I’ll bet you’d want to scream “Make it stop! Make the pain stop!  I can’t take anymore!”

But no one is going to make it stop for my client. Barrows Neurological can’t make it stop. The malpractice suit isn’t going to make it stop. Pain medication barely touches it because it’s nerve pain. Nothing…nothing…NOTHING is going to make it stop.

Aren’t you glad it isn’t your right arm?

People say things like that for a number of reasons. First, they cannot feel just how much pain she’s in. Second, they don’t understand that this may be permanent and even progressive. Third, they don’t realize how much they use both hands when they need to get things done.

But the biggest reason that people say this is because they don’t want to have to acknowledge my client’s immense suffering. The idea that life can randomly, arbitrarily deal out such horrific suffering is more than most people can bear, and so they push the idea away with bland platitudes and stupid statements that demand the suffering person “see the bright side of things”. You know, because, happy and all that!

You see it in the wake of Hurricane Harvey in some of the statements on social media.

People asking why Joel Osteen didn’t open up his church to provide refuge. “If he had just opened his church…”

People stating that the people in Houston should have evacuated. “If they had just gotten out of Houston…”

People criticizing the unwise actions of those who tried to drive out of Houston after the flooding was severe. “If they had just listened to the news they would have known…”

Isn’t it easy to armchair quarterback someone else’s tragedy?  Isn’t it so clear what they should have done, how they failed to respond correctly?  Don’t you feel righteous and correct and so much more…informed and wise…than those people who should have just ….

Yeah. Once again, we’d rather turn a blind eye to the random, arbitrary suffering of others than to face the truth: no matter how hard you try to do life correctly, horrible things will happen that will almost destroy you and there will be no good reason for the destruction.

And that’s what I mean when I say Our Privilege Is Showing.

When we sit in our dry, climate controlled homes, relaxing in our comfy chair, criticizing the failures of those who are suffering because of natural disasters, we are exercising the privilege of safety to erase the suffering of the endangered and the refugees.

When we demand that sick, suffering individuals look at the bright side of their illness (Aren’t you glad it isn’t your right arm?) we are exercising the privilege of wellness to erase the suffering of the sick and disabled.

When we refuse to acknowledge the hidden disabilities of those whose chronic illnesses are not immediately visible we are exercising the privilege of wellness to punish those who refuse to be openly and visibly disabled and refusing to believe their claims of disability because they don’t meet our ‘criteria’…even though even though the government and the medical field has established clear criteria for disability.

Anytime you ease your own discomfort with someone else’s situation by dismissing their suffering or their struggle you use your privilege to make that person invisible.

Well…I’ve got news for you.

God’s children are never invisible to God. God sees all of His children: the well, the sick, the wealthy, the poor, the adequately housed, the homeless…all of them. And He sees you when you decide not to see suffering, sorrow, loss, disaster, disability, homelessness, poverty, discrimination, and inequality.

Never forget, God is watching. What will He see you doing?

Our privilege is showing.  Aren’t you glad it’s not your right arm??

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My Curmudgeon Speaks

Yesterday I drove a friend home from her chemotherapy appointment. She was starting a new regimen and wasn’t sure how she’d react to it, so she wasn’t sure she would be able to drive herself home.  I was grateful that I was able to help her, considering there isn’t much else that I can do to help her deal with having terminal cancer.  She, on the other hand, was sorry that she had to inconvenience me.  She is uncomfortable with the ways that cancer has forced her to rely on friends for help with stuff she used to be able to easily handle on her own.  I think anyone in her situation would be terrified of just how helpless they could become and how much they might have to rely on others to care for them and for their family before the whole thing would be over.

And you can’t really blame someone for feeling like that.

I don’t think anyone likes to ask for help from others. For some of us, asking for help makes us feel weak and incapable. Here in the US, we like to think of ourselves as independent and resourceful; we don’t rely on others, they rely on us.  How that equation is supposed to work is beyond me. If everyone relies only on themselves, then being reliable for others is impossible.  The math of this equation is beyond me, and I have two master’s degrees, so I’m not going to try and figure that one out. Instead, let’s deal with the assumptions that come with asking for help, one at a time.

Here we go, folks:

The truth is that humans are weak and incapable— every day, all the time, in one aspect or another of our life and health we humans are weak and incapable. Get used to it. No matter how healthy you are today, your body is ultimately frail and bound to fail.  Eventually we will all need the services of a surgeon, a physical therapist, a mental health counselor, an oncologist, a rheumatologist, or a neurologist (just to name a few.)  Eventually the frailty of our body will cause us to rely on our family, our friends, hired help, and even skilled nursing facilities just to be able to attend to our daily needs.  Our bodies are fascinating machines, capable of so much but they are also capable of terrible amounts of sickness, frailty, and failure.

Get used to it.  It isn’t a pleasant thought, but it is important to remember that birth is a terminal disease, as the mortality rate for human beings (as it is for all other living creatures) is 100%. If you are born, you will eventually die, and the majority of people will not come on their death suddenly but instead through a process of decline and increasing disability that will require the assistance of others in order to meet simple daily needs.

Having said that (rather bluntly…but I was hoping that we could talk turkey here on this blog)…

As a counselor, I frequently ask my clients why they have not asked friends and family for assistance when they are really struggling, and I get a host of reasons:

“I don’t want to be a bother.”

“I can never repay them for all their help.”

“I don’t want to be beholden to anyone.”

For my thoughts about the first one of those reasons, see the section above.  You will be a bother occasionally, and that’s the way life works. Get used to being human for the sake of everyone who loves you, please.

But what is our issue with needing to ‘repay’ the good that is done for us?

We seem to view assistance from others as if it is a loan we receive from the bank, requiring repayment with interest.  This is especially evident in the statement “I don’t want to be beholden to anyone.”  This betrays the belief that any assistance we receive is like a debt held over our head to be called in at random when it will be most painful or perhaps even destructive.

Folks…our friends and family members are not loan sharks lurking around, hoping that we’ll need something from them so that they can squeeze us later for whatever we’re worth. If the people who supposedly ‘love’ us behave like that, perhaps it’s time to consider finding a new group of friends and putting some distance between ourselves and our extended families, because there is no love in behavior like that.

The other thing that this attitude betrays is a transactional sense of friendship and love. “You scratch my back and I’ll scratch yours.”  There is nothing wrong with reciprocity; it gets a lot done in this world. The thing about reciprocity is that it creates a closed system where you only ever give to someone who can give back in equal amounts.  The implication of such a system is that we often end up refusing to give to someone who cannot give back in equal amounts, and that puts service and random acts of kindness out in the cold. It also reduces all of our most loving relationships to simple transactions where we give only so that we can receive in kind.

And that seems to be a huge problem in our society these days: many of us refuse to give to others unless there is something explicit that we can receive in return.  And don’t start on me about how giving to others “feels good”, because the people who refuse to be beholden to others only give for the “good feeling” when their giving is to faceless others like the poverty-stricken folks in Africa.  It’s easy to give to faceless others, and so much harder to give or receive when the face before you is not only known, but in close relation to you; giving like that creates the emotional debt of “beholden-ness” that these people are trying so hard to avoid.

What would happen in the world if we simply abolished the concept of repayment when it comes to kind acts? What would happen if no one was ever beholden to the one who helped them?

I would remind you that Christ, who died so that we might know eternal life, did not expect a payback for his love or his sacrifice.  You cannot give God anything as God possesses everything.  God is not ever in need. Christ did, however, expect that we would take the grace and forgiveness that we received because of him and pass it on.  He asked that we go to all corners of the world, making disciples and teaching them everything that he taught us…basically he asked that we give away all that we’ve learned from him and all that we’ve received from him, and then teach the next recipient to pass it on just as we have.

Jesus…turns out he’s the guy who invented “Pay it Forward.”

Perhaps that’s the answer to our feelings of indebtedness when someone helps us. Don’t pay it back! Take the grace that we’ve been given and pay it forward to the next person who needs us. Give to others as we have been given to. Help others as we have been helped.  And give without thought of repayment because we have been given to by Jesus without any thought of repayment.

And when that day comes that we can no longer give to anyone—on the day that we find ourselves helpless to pay anything forward ever again—let us pay back the service we receive in humble thanks and genuine gratitude, something else that is in short supply these days.

Thank you for enduring my curmudgeonly frustrations.  It isn’t often that I want to use this space to rail against human foolishness.  You are a generous, giving reader and I intend to pay your kindness forward with a less curmudgeonly post shortly in the future.

That is all.

It’s A Conspiracy!

Can we discuss “the peace that passes all understanding”?

I have heard that phrase for years. I remember hearing it as a child and wondering what it meant and how I was supposed to get something that I didn’t even understand.

Don’t get me started about trying to understand something that says, in its title, that you will not be able to understand it.

But I digress.

“The peace that passes all understanding” turns out to be one of the Christian code-phrases we hear about when millennials and agnostics write about the Church; words and phrases that appear to have no context for meaning if you are not already faithful.

I’ve got news: I grew up in the Church and accepted Jesus as my personal savior when I was only five years old, and I still did not understand lots of those Christian code phrases.  It isn’t because you’re young or seeking or simply unfamiliar with the Church; you don’t understand the code phrase because…well, because we Christians hardly ever take the time to define what the heck we are talking about and we pastors can be even worse.  We just throw the phrase out there like it means something and expect everybody else to understand it intuitively.  The evangelical movement has a ton of these phrases:

“Walking in victory with Jesus”

“Growing in grace”

“Die to self”

“Washed in the blood”

“The peace that passes understanding”

“Pray a hedge of protection”

There are plenty more but I figure you’ve probably gotten the point by now.  I remember hearing these phrases and wondering what they meant but never really asking for an explanation. Even when I did ask for clarification, the answer I received was often just as baffling as the code phrase itself.  “Walking in victory is when you have grown in grace enough that you are able to ignore the attacks of the Enemy and follow the will of God wherever it leads you.”  Okay, so how do you ‘grow in grace’ enough to ‘walk in victory’?  “You grow in grace when you ask Jesus to wash you in His blood and help you die to self.”

The explanations were kind of circular in nature.  After a while I just gave in to the thought that perhaps my experience of faith would explain these concepts to me and I would finally understand what no grownup seemed able to fully explain to me.

Don’t get me started on why I thought growing up would cause me to understand what other grownups were incapable of explaining despite their advanced age.

But I digress.

The problem with these Christian code-phrases is that they can lead to a conspiracy of lies around what it is to experience the Christian life.  It makes it sound like good Christians don’t experience fear or anxiety or depression…after all, they have the peace that passes all understanding!  And of course, they don’t struggle with finances or with adverse situations, because they are “walking in victory with Jesus” and victors aren’t losers! Only losers struggle.  If you’ve truly ‘grown in grace’ then you probably ought not to curse or lie or speak unkind words…in fact you can’t be even remotely sinful…because growing in grace implies that you are continually becoming more holy and holy people are squeaky clean!  And goodness knows that those who ‘die to self’ don’t act selfishly since their ‘self’ no longer matters.  Those who have ‘died to self’ just give and give and give and never get tired of giving because they receive all they need from Jesus…

Really?  Because that’s a bunch of BS.

Christian life is full of struggle and fear and pain and failure and sin and self-focus and self-care and prayer and reflection and growth in grace…

There! I said it!  One of those Christian code-phrases makes sense to me!  I understand growing in grace, because I came to understand grace when I became a Methodist.  Grace is an unmerited gift from God that helps me become all that God created me to be, by drawing me deeper and deeper into a relationship with God, which slowly changes me until I am conformed to the image of Christ.

Oops! I just used another Christian code-phrase.  In fact I used several.

The truth is that these phrases do have meaning.  Some are symbolic (since no one really bathes you in blood, thank goodness) and others are more representational of Christian life and faith as it is actually experienced, because I really should become much more like Jesus Christ as my relationship with Him grows deeper and stronger. To me, becoming more like Jesus (more Christ-like) means that I should be more loving and accepting of those on the margins of society and that I should actively seek social justice and equality for all people.  The Jesus I know is a bit of a rabble-rouser.

I want to get back to the conspiracy of lies.

In all honesty, the conspiracy of lies starts as a conspiracy of expectations. I grew up in a fundamentalist, evangelical faith tradition that emphasized orthodoxy (right belief).  We were taught that orthodoxy would lead to orthopathos (right experience). In other words, believe the right things and you will experience the right things.

That’s a powerful draw to faith!  Think about it—according to that concept, believing the right things will lead me to experience the “right” things: peace, prosperity, happiness, success, achievement…you name it, whatever this culture deems “right” is what I will get if I believe in the right ways.

Here’s a few things that our culture does not deem “right” despite their frequency in the general population:

Poverty

Domestic Violence

Divorce

Having children who commit crimes or use drugs

Addiction

Mental illness, including depression and anxiety

Unexplained or chronic illnesses that are difficult to manage

Wow.  Just wow. Can you imagine what it’s like to grow up believing that none of these things should happen to you if you have “right beliefs”?  And it doesn’t help to acknowledge that (of course) these things ‘happen’ to Christians, it’s just they don’t persist and (of course) Christians count on their faith to give them “victory in Jesus” over all these circumstances.

This is how you end up with a conspiracy of lies.  If right belief means right experience, then I better not let anyone know that I am having the wrong experiences, and if I do tell the truth for a brief moment, I better not let anyone know that my wrong experience is persisting.

The funny thing is that Jesus told us that He is “the way, and the truth, and the life”. (John 14:6) He also said that if we continue in His word, we are truly His disciples and we will know the truth and the truth will make us free. (John 8:31-32).

Does the “truth that will set us free” include telling the truth?  I think so. I also think it means that we will stop fearing the truth as if it will destroy us and invalidate our faith.  Get real people! We worship a Savior who cried out “My Father, my Father, why have you forsaken me?” as he hung on the cross, dying.  Jesus didn’t say that to quote a Psalm and look impressive. Jesus said that because it was His experience as He died a horrific death.

If Jesus didn’t lie about His pathos…and I don’t think we should either.

Skip the conspiracy…both the conspiracy expectations and the conspiracy of lies…and stick with the Truth.

It’ll set you free. Trust me on that one.

Healing the Blind

Mark 10:46-52  (NRSV)       The Healing of Blind Bartimaeus

46 They came to Jericho. As he and his disciples and a large crowd were leaving Jericho, Bartimaeus son of Timaeus, a blind beggar, was sitting by the roadside. 47 When he heard that it was Jesus of Nazareth, he began to shout out and say, “Jesus, Son of David, have mercy on me!” 48 Many sternly ordered him to be quiet, but he cried out even more loudly, “Son of David, have mercy on me!” 49 Jesus stood still and said, “Call him here.” And they called the blind man, saying to him, “Take heart; get up, he is calling you.” 50 So throwing off his cloak, he sprang up and came to Jesus. 51 Then Jesus said to him, “What do you want me to do for you?” The blind man said to him, “My teacher,[a] let me see again.” 52 Jesus said to him, “Go; your faith has made you well.” Immediately he regained his sight and followed him on the way.

My mom has dealt with chronic illness for as long as I can remember.  She has several things wrong with her spine as well as several autoimmune illnesses that cause pain and fatigue.  When you put it all together, what you get is a very tired woman in constant pain.  My mom has always handled all of this with more grace than I could ever have managed had I been in that much pain constantly. If she were able to speak through the computer she’d tell you that she loses that grace at times and just sits and cries, but the truth is that something like that is a rare occurrence.  Only recently, as age has added insult to injury, has my mom slowed down.  I mention all of this because my mom’s illness has impacted the way I view passages of scripture about healing; I can’t look at any scripture that discusses miraculous healing without thinking of my mom and the many, many times we’ve prayed for her to be healed of everything that causes her pain and limits her life.

Spoiler alert: no miraculous healing.  Sorry guys…this is not going to be a story of healing that defies human understanding.

As awful as it has been watching my mom suffer, I have to admit that I have benefitted a great deal from her suffering.  You see, even though my mom was in pain every day, she never failed to do everything that she could to make our home a most amazing place to be. She did the cooking and cleaning, she sewed our Halloween costumes, she baked homemade bread and canned delicious pickles and jams, and she baked tons of holiday treats, including killer birthday cakes and Christmas cookies that frequently cause me to be sadly disappointed at state of bakery/restaurant desserts.  I have this experience with soup and pasta sauces in restaurants as well. In so many ways, my mom ruined me for restaurant food—it never measures up to mom’s cooking.

Lest you are sitting there struggling with your own chronic illnesses thinking that my mom couldn’t have been in that much pain if she could do all these things, you are wrong. My mom had times when her pain was so great that she couldn’t do any of the things she loved to do for our family, and this is why our family was so grateful for all the things she was willing to do.  We understood that standing up for hours to chop and ice pack the veggies that she would later pickle caused her tons of back pain…and we understood that she chose to do it anyway because she refused to let her disease define who she would get to be as a mom and as a wife. Somedays all she could do was take her medicine and rest; somedays it was canning blueberry peach jam and baking four loaves of homemade bread before dad came home for dinner. As a kid, I came to understand that chronic illness ends up playing out as a tug-of-war between your will and your illness, and every day it’s a toss-up to see who wins.

Because of my mom, I learned compassion for the challenges that face the chronically ill. I’ve learned to respect for the ways that chronically ill people sometimes defy their illnesses by choosing activities and lifestyles that increase their pain and suffering just so that they can enjoy some quality of life.  I’ve learned not to discount the experiences of those people whose disability and/or suffering isn’t immediately visible (like chronic fatigue) and not to judge them when their disease overwhelms their ability to participate in life the way they want to. I’ve learned not to take it personal when a person with chronic illness cancels on me, saying that they are just too tired/unable to deal with another thing to do.  I’ve learned that most people who have chronic illnesses suffer in silence from our prejudice and ignorance of what it is to deal with chronic illness; I’ve also had to acknowledge that sometimes I am just as prejudiced and ignorant as everyone else when it comes to understanding an illness I don’t have and cannot imagine experiencing.

My mom opened my eyes to see what it’s like to live with chronic illness and chronic pain and because of that, I am a better counselor.  I am also really thankful that she was honest with me about her experiences when I was just a child, because it helped me be a better adult.

And that’s where Bartimaeus comes in.

Bartimaeus came to Jesus seeking healing for physical blindness, just like my family went to God seeking physical healing for my mom.  Bartimaeus got his healing; my mom didn’t.

Or did she?

My mom spent her entire life fighting to enjoy the simple pleasures in life: being able to sit long enough to take a drive in the country; being able to stand long enough to can the vegetables my father grew in the garden; being able to bend down to pick up her toddler son; being able to sit in bleachers to cheer at my first track meet.  How many people blow through those moments and fail to realize what a gift they are?  How many people will never understand what a blessing mobility is? How many people will never understand that every moment they are alive and aware is a blessing beyond words?  My mom praised God for moments like these, frequently out loud in front of our family, and after a while I learned to join her in thanking God for the simple pleasures of life.

Most of us will not come to understand these blessings until we are faced with a life-threatening illness, which if we are lucky, will not happen until we are well into our senior years.  We will live the majority of our lives blind—blind to the simple blessings of breathing and moving and doing whatever we will to do every single day.

Bartimaeus begged Jesus “Let me see again!”  My mother’s suffering blessed me because I began to see and understand the challenges of chronic illness when I was still a young girl and that sight is crucial for many of my clients whose chronic illnesses steal away their strength, vitality, and joy.  Because my mother suffered, I am not entirely blind to the blessings I have been granted that my mother had to fight dearly to hang onto.  While I may not have perfect sight by any means, I can see.

I guess this is a story of miraculous healing after all.