Keep Growing!

My wonderful husband makes me coffee each day before he leaves for work (and before I wake up.) So, every morning I have a few minutes to sit and stare out the kitchen window while I wait for the microwave to heat up my coffee. As I look out the window, I see all the trees and brush growing on our mostly wild property. In particular, I see a tree just outside the back fence that I have come to think of as “my” tree, because I see it as symbolizing my life with a chronic illness.

Several years ago, we had a terrible ice storm, which coated all of our trees. The ice was so heavy that the younger, thinner trees bent over with the weight of it. After the ice melted, all the trees gradually returned to their normal upright position over the next few days, with the exception of this one, which has remained bowed over ever since. Somehow, it was so damaged by the ice that it was never able to spring back. For years, I would look at it and think that maybe it would eventually get back to the way it was, but it has never happened. However this year, I noticed something that is absolutely amazing: at the top of the arc, new growth has appeared, reaching straight up! It’s as if the tree has realized it’s never going to unbend, so it better start growing upward in the only way it can - from its new “top!” It’s just getting on with its purpose in life as best it can, which is to grow up toward the sky.

And that’s what got me thinking about the parallel to my own life. Over thirteen years ago I was “bent over” by an illness. Most people would have recovered normally from it, and gone back to “standing upright” (full health.) But I never did. I’ve remained “bent over” (chronically ill) all these years. I was too damaged by the illness to go back to normal. BUT, even though I’m bent over, I’m still growing! I’m growing out from my illness! Just because I’m chronically ill, doesn’t mean my purpose in life is over! I’m still sick, but my life still has meaning. I can still grow. It’s not the growth I would have wanted, but it’s still growth. 

And the alternative can also be seen in this photo: off to the right you can see a tree that snapped off because of the weight of the ice. That could have been “my” tree. It would have been easy for me to just give up on my life and dreams, because of my illness. All of my hopes and plans were dashed. I could have just snapped in two. But I didn’t. I decided that even though I’m bent over, even though I’m not like a “normal” healthy person, I wouldn’t give up. I chose to keep growing, just as “my” tree has!

Maybe life has left you “bent over” too. Maybe you thought that you could never grow again, because of the damage caused. But that tree is living proof that you can keep growing, keep living. I see it every day, and it reminds me the God can create good out of any situation, any life - no matter how broken. If that tree can do it, so can I. And so can you!

On Grief

Grief is an odd beast. Despite our efforts to tame it, to explain it, to contain it, it shows up when we least expect it and in ways that we can’t predict. I don’t mean that we never know when some grief-causing event will happen - I mean that grief shows up weeks, months, years after some event, surprising us with its black fury.

Everyone is familiar with the “five stages of grief” as defined by Elisabeth Kübler-Ross:

1. denial 
2. anger 
3. bargaining 
4. depression 
5. acceptance

and I thought I understood them, too. I’ve gone through these stages when confronted by the loss of loved ones, and - more pertinent to this post - because of the loss of my old life due to chronic illness. I went through these stages 3-4 years into my illness, when I realized I was suffering from depression and needed psychological help. I saw a therapist for a few years, was on antidepressants for a while, and then felt like I’d reached stage 5, and I was good to go for the rest of my life.

But then, 2 years ago, when my illness was still undiagnosed and my condition continued to deteriorate, it became apparent that I was depressed again. So, back to the therapist, back on antidepressants, and back though the grief process. And, once again, I felt I had hit stage 5, and I was good to go.

And then something amazing happened: I received a diagnosis of my “mystery” illness! After over 12 years of searching and seeking, traveling all over the country seeing specialists, I got referred to a doctor here in my hometown who diagnosed me! And he started me on a treatment that is already making a difference in how I feel. This is great news, right? I finally know what I have, and I have a treatment that is improving my condition! Awesome!

But - here’s the weird thing - I’m facing grief all over again. Just like before, I am grieving the life I used to live: a life of sports, of world travel, of a career I loved. A life of health and vitality. And I’m grieving for my future life, because even though I have a diagnosis and treatment, the diagnosis is of a chronic illness, meaning I’ll never be healed (barring a miracle) and I’ll have to be struggling every day to face life as a disabled person. I can’t eat what I want, I can’t do what I want, and this is the way it’s going to be for the rest of my life.

So, here I am again, in the land of grief. And I finally get it: grief is something you never get over. And those five stages? They don’t happen in order. Heck, I’ve gone through all five in a single day! And then I wake up and have to go through them all over again! Or I’ll get stuck in one stage for a day, or a week, or a month. And I can go from acceptance, back to anger, on to depression and then end up in denial. There’s no rhyme or reason to the stages. And - this is the important thing - there is no end to grief. Grief is now a part of my life, and will be with me until the day I die. It’s a part of me now because my old life is gone, and will always be gone, and I’ll always miss it. Some days that grief is easier to bear, but some days it comes crashing down on me like a black wave and it’s all I can do to make it through the day.

Coming to this realization - that grief never goes away - is actually a good thing. Now I don’t feel like a failure when one of the stages of grief hits me out of the blue; it’s not because I haven’t “completed” the five stages - there is no completion. When you suffer from a truly life-altering event, grief will always be there. But that’s okay - now that I know I’ll never “get over” my grief, I won’t beat myself up when the dark days come. I’ll simply recognize the darkness for what it is, and know that I will make it through to better days. I always have and I always will, because it is God who holds my hand and leads me through the “valley of the shadow of death.” He is the one who comforts me and catches my tears, and reassures me that I’ll make it out of the darkness into the light once again. 

Just like my chronic illness, grief is now a part of me. And, just as I’ve learned to live with my illness, I’m learning to live with grief. It’s just the way it is. And that’s okay.

What if the storm never ends?

One of my long-time favorite Christian songs is “Praise You in This Storm” by Casting Crowns. Here is the chorus:

And I'll praise You in this storm

And I will lift my hands

For You are who You are

No matter where I am

And every tear I've cried

You hold in Your hand

You never left my side

And though my heart is torn

I will praise You in this storm

(Full lyrics here. Listen here.)

I always liked this song because it reminded me that God is still God and He still loves me, even if I’m going through a hard time. And it also reminded me that storms are temporary, and God will see me through them. But what if the storm isn’t temporary?!?

When I first became ill with a mysterious illness, over 12 years ago, this song spoke to my heart and gave me much encouragement. I continued to praise God, and trust that He would deliver me from the “storm” of my illness. Well, all these years later, not only am I still sick, but I’ve now been diagnosed with a chronic illness, meaning that I’ll never recover (barring a literal miracle.) So, now, my “temporary storm” is something that will be with me for the rest of my life. What do I do now? Where is my hope, if the “storm” will never end?

Well, the message is the same: God is still God, and He still loves me. He is still worthy of praise. God is unchanging. He is the rock on which I stand. Yes, my life is not what I had hoped or planned for, but that doesn’t change the reality of who God is or how much He loves me. The fact that my illness will be with me until I die (barring a miracle ;-) doesn’t change any of this.

The only thing that has changed is how I look at my illness: I can’t think of it as a “temporary storm” anymore. It’s just my life now; it's my new normal. There will be other “storms” that God will see me through. In the meantime, God is with me as I walk out this part of my life, just as He was with me when I was healthy.

We all have things in our lives that we thought were temporary storms, only to find out that they never went away. Maybe it’s a chronic illness, like me. Maybe it’s a loved one who died from an illness, or who has never been delivered from alcoholism or addiction. So what we hoped was temporary became permanent. But it still doesn’t change who God is. He promised that He would never leave us, and He won’t. If the “storm” becomes your life, then accept it as your new normal, and stand firm in the knowledge that God is with you and is holding you and carrying you every step of the way. 

So, even though the “storm” doesn’t end, God is still with us. The “storm” simply becomes our normal “weather” and we keep trusting and praising God. Because God’s promises never change, even if the weather does!

No!

"No."

I’m sick of that word. This battle with my (STILL) undiagnosed illness has been 12 years of “No.” 

• No, you can’t ride your bike.
• No, you can’t lift weights.
• No, you can’t exercise at all.
• No, we don’t know what’s wrong with you.
• No, we can’t do anything to help you.
• No, you can’t eat what you want to anymore.
• No, you can’t volunteer with the International Programming Contest.
• No, you can’t travel.
• No, you can’t work.
• No, you can’t go to church.
• No, you can’t get a good night’s sleep.
• No, you can’t ever feel good.
• No, you can’t get disability payments.

I can’t keep facing this endless list of “No.” I need a yes. One little yes. Something - anything - that can give me a feeling of hope. But I don’t get anything. Nothing, zip, nada, zilch. Just another “No.” Over and over and over. “No.”

Look, I know that God still loves me, I know I have the best husband in the world who loves me and takes awesome care of me, I know I have the good fortune to be covered under his insurance, I know there are many things for which I can be grateful. I get it - really I do. And I’ve spent the last 12 years focusing on those good things, and trying to stay positive and thankful and do all the rose colored glasses things. But I just can’t anymore. I can’t keep it up. My life sucks. I should be in the prime of my life, working at a job I love, traveling all over the world, racing bikes, involved in church, living and loving life!! That was me 12 years ago. It should still be me. And it totally, completely sucks that it isn’t.

So, here I am, sitting in my rocking chair, feeling like crap, just like I do every day. And I just can’t take another “No.” I can’t do this anymore. I don’t know what I’m going to do, but I just cannot keep up the positive vibe. It’s too hard!! I’ve been doing it for TWELVE FREAKING years!!! And now I’m at my limit. Something is going to have to happen for me to not just spiral down into total darkness. I need a miracle. I need a “Yes.” Is that too much to ask? That I get one teensy bit of positive news regarding my illness? Because 12 years of “No” is more than anyone should have to face. And I just can’t face another day of it.*

*Don’t worry, I’m not contemplating suicide! It’s my attitude that I can’t keep up any longer, not my physical life.

The Elephant in the Room

Living with a chronic illness, I struggle to not become bitter and despondent about my condition. It would be so easy to think about all the things I’ve lost (job, hobbies, social life) and get angry about the unfairness of it all. And then when I look ahead to a future where I am able to do less and less, I can quite easily give in to despair and hopelessness. I could live in this morass of darkness without any effort at all.

BUT - I don’t let myself go down that path. I don’t want to be a bitter, angry person, going through life complaining about how awful I have it all. Yet, the reality of my situation cannot be ignored. My illness is there, looming over every facet of my life. It is the proverbial elephant in the room. The elephant dominates everything - it gets in the way of me doing the simplest chore, making said chore become a huge physical challenge. It stands in the middle of the room, blocking my way to events and activities, keeping me trapped in my chair. It’s a big, stinky, immovable object, smack dab in the middle of my life!! 

I think we all know people who are struggling with hard things in life, but are so overwhelmed by them that they spend all their time telling you how awful their life is. They are bitter, angry,  unhappy people. I don’t want to be like that. Now, I’m not trying to say that when life throws you a curve-ball you should just plug your ears and sing, “La la la la - I can’t hear you!” When bad things happen, get mad, get angry! You should!! But don’t make your bed there and spend the rest of your life going over and over how bad things are and how unfair life is. You will make yourself miserable, and make those around you miserable, too! Who wants to live like that? Not me!

I do not want my illness to dominate my attitude. Despite the fact of its existence and power, I refuse to let it rule me. I acknowledge its presence and how it has forced me to change my life accordingly. BUT I REFUSE TO LET IT OVERPOWER MY SPIRIT. No, I can’t deny what it is and what it has done to my life, but I’m not going to make it my focus, or allow it to ruin what I have left in life. It is simply a fact of my life, and I need to make peace with it. It’s not that I pretend it’s not there - that would be impossible. I just try to live as best I can, in spite of the elephant in the room.

So, yes, I’m ill and disabled. (Hello, Elephant!) But there is more to me than my physical body, and I choose to live that life to its fullest. Naturally, I have to make accommodations for the elephant in the room (I’ve had to drastically rearrange the furniture of my life!), but I will not let the elephant destroy my happiness. I refuse to let it be the focus of my life! And, really, if you add some lovely draperies to it, an elephant can really spruce up a room! ;-)

On Body and Spirit

Because I’m home all day, I do a lot of thinking. And, of course, I do a lot of thinking about my illness, and my response to it, and what God’s plan is for me through all of this. And recently, I’ve come across an interesting little idea. Let me see if I can explain it. 

Living with a chronic illness means that you are hyper-aware of your physical state at all times: Do I have the energy for a shower today? Can I do a load of laundry today? How sore am I? How tired? Did I do something yesterday to make things worse (or better)? It’s a constant state of checking in with your body and taking stock of its status. Because of this, I sometimes feel very selfish - I’m always focused on my needs and my abilities (or lack thereof). But, as my wonderful mental health counselor (the amazing Michelle Estelle, PhD, of Cornerstone Psychologists) said, “Self care is not selfishness.” She also reminded me that when I was healthy and working out, I also had to take stock of my physical state, so that I could tailor my workouts accordingly. But, still, it is more of a constant thing, living with this illness. Every activity throughout the day is prefaced by the thought, “Do I have the strength to do this?” In short, I’m practically obsessed with the state of my body.

On the other hand, this constant physical focus makes me aware of the spiritual reality that this is not my eternal state. One way that happens is the whole unfairness of the situation. It’s just not right that anyone should be saddled with a chronic, debilitating illness, slogging painfully through every day. This sense of injustice, recognizing the “wrongness” of it, makes me realize that my spirit knows how things should be, that my spirit knows - and yearns for - a place where my body won’t be broken. This, of course, is heaven, where my body will be in perfect health, without pain, without weakness. The injustice here points to the justice there. So, even as I am focused on my physical body here, and am dismayed at its failings, it serves to point my attention to a better place, and helps me look to spiritual things. The physical accentuates the spiritual.

This duality is very much in keeping with how God works. He uses the natural to point to the spiritual. The very model of this is Adam, the broken sinful man, pointing the way to Jesus, the whole and pure man. But there are examples all throughout the Bible: the mustard seed, the lowly manger, David and Goliath, and even the cross. God always uses the natural or the physical to point us toward the spiritual. In my life, my broken body helps me to remember the promise of a whole, healed body. So, even though I tend to focus on the physical state of my body, I can use this to remind myself of God’s promise that I won’t be like this eternally. And this promise reminds me of so many other of His promises, that I lean on daily. 

So, though it may seem I’m obsessed with my physical body, I can flip it upside down, and be focused on God. Instead of a constant reminder of my broken body and the unfairness of it all, my illness is a constant reminder of God’s goodness!*

*DISCLAIMER: Of course, I would definitely love to have a healed body, here and now! But I refuse to let my body’s failings blind me to God’s over-arching promises and goodness. This is the choice I make daily - hourly - in my life. 

The Miracle

There is a song by the Christian group Casting Crowns, called “Praise You in This Storm” and this is the first stanza:

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

And the part about wiping our tears away really hit me this morning. I used to view my illness as a “storm” that I had to get through, but the “storm” has now lasted 12 years, so I had to come to terms that my life is now just very different than what it used to be, or what I hoped it would be. But what got me thinking was that even though God hasn’t healed me, he has wiped away my tears! And that’s quite the miracle: that I could go from a life of sports, travel, and activity, to a life in a rocking chair and that I can still say that life is good, and that God is good!

There are many songs and sayings that speak about God’s transforming power:

• He makes beauty from ashes
• Joy comes in the morning
• He turns mourning into dancing

I used to think that for those to be true God would have to heal me. Only then would He make beauty from the ashes of my illness; only then would I have joy; only then would I dance. But I have come to realize that the true transformative power is when we are still in the midst of pain and suffering, yet we have beauty, joy, and dancing.

Think about it. Which is the greater miracle: God healing me so that I go on with the life I had with a single “God did this for me” testimony, or God meeting me here and now – in the middle of my struggle – giving me strength and courage, and a testimony of God’s daily intervention in my life?

Now, to be quite honest, I would have preferred the healing!! J Nevertheless, I do think that He is working a miracle in my life: He has wiped away my tears, and in their place he has given me joy and a victorious spirit, even as I walk this very hard road that I would rather not be on. By not healing me, He is instead using me to show people the truth of His love and care for us. It sounds crazy, I know! But I do really know how much He loves me and cares for me, because I have to depend on Him every minute of every day. He has not ever abandoned me, even when I couldn’t feel Him. He has been with me every step of the way, holding my hand and guiding me – and some days He has flat-out carried me!

This is the miracle: that I can sit here in my rocking chair, too weak to do much of anything, with my former life gone, and all I loved to do taken away by this disease, and I can still say “It is well with my soul!” He has, indeed, wiped away my tears, given me beauty, given me joy, and set my feet to dancing (metaphorically, at least) – and yet I am not healed. It’s a miracle!

Jesus, Bring the Rain?

There is a very popular Christian song called “Bring the Rain” by the group Mercy Me. This is the chorus:

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

Those last two lines: no. Just no.

First off, God doesn’t “send” bad things into our lives, for any reason. Bad things happen to us because we live in a fallen world, full of fallen people. But God doesn’t send those things to us. They just happen. Asking God to “bring the rain” is heretical, at best, and self-destructive, at worst.

But, for the sake of argument, let’s assume that bad times are God-sent, and so it’s something we can ask for. As someone whose life has had more than its share of “rain” I can say without question: DO NOT PRAY FOR HARD TIMES! Even if “that’s what it takes to praise” God! It sounds so spiritual for someone to say, “I’m so glad I experienced that (cancer, loss of a job, etc) because I’ve learned so much about God and His love!” But, ask the parent who lost a child if they’re glad their child is dead because they’ve gained so much insight into God’s love through coping with it. Ask the husband who lost his wife and the mother of his children to cancer if he is glad his wife is dead, because through her death he learned more about God’s love. The answer would be a resounding “NO!”

It’s certainly true that through hard times we can learn more about ourselves and about God, but you’d be a fool to ask for these difficulties. Certainly, because of learning to cope with my illness, my relationship with God is deeper than it was before I was ill. But, without a doubt, I would still rather be healthy and living my old life than living this one. The life I have now is HARD!!! This life is a battle. Every. Single. Day. I struggle just to get out of bed. I struggle to make it through the day, without wearing myself out. I struggle to keep depression and despair at bay. Do you really want that?  Really?? Maybe I’m not spiritual enough, but I’m NOT glad I’m suffering this undiagnosed illness that has robbed me of my job, my hobbies, my volunteer work, my very health! Yes, I am glad that I have learned wonderful things through this struggle, and I’m eternally grateful to a God who has been able to bring some good out of it, but I am not glad I’m ill and disabled. I’m not glad that this is how my life has ended up. I am not thankful for this illness. I am only thankful for a loving God who has been with me every step of the way, and who daily gives me strength.

Asking for “the rain” to fall in your life is silly and pseudo-spiritual. If you really knew what it was like to face life-altering struggles, you would NEVER ask for them! For me, knowing more of God is not a fair trade-off for my health and all that its loss entails.  Maybe that makes me a poor Christian or not spiritual enough, but I’m just being honest. I would trade my newfound spiritual growth for my old life – in a heartbeat. In my old life, I knew God and His love for me. I walked with God, I served God. Maybe the depth of my knowledge wasn’t as great as it is now, but I certainly lived a spiritual life, even as a healthy person. So why would I want an illness that has taken away so much of my life, just so that I could feel God’s love a bit more? Sorry, but to me it’s just not a fair trade-off.

So, just stop “praying for rain” – it’s just not good theology, and it’s a false spiritual attitude. God doesn’t send you hard times, and those hard times you do end up going through could rob you of your husband/wife, your child, your health. Do you really want to lose those things in your life? No sane person would. And no loving God would send such things into our lives.