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!

YES!

So, this post is long overdue, but my life has been turned upside down since my last post. Some of you may recall my post of late February, titled “No” (you can read it here.) Basically, it was about the fact that with my illness I’d had nothing but twelve years of “no.” I had seen dozens of doctors all over the country, and had gotten no diagnosis and no help for my symptoms. I had been forced to give up more and more things I loved. And at the point of that post, I had just been denied disability payments, and that was the last straw. I just couldn’t keep going with a positive attitude, and had lost all hope. I ended the blog with a plea for just one teensy-weensy yes.

Well, guess what? I got a GREAT BIG YES the week after writing that blog - I GOT A DIAGNOSIS!!!!!! Can you believe it?!? I still can’t quite believe it myself! And it was a doctor here in town who was able to finally diagnose me - not one of the specialists at Harborview or the Cleveland Clinic. Amazing!!

Here’s how it happened:

My neurologist (the wonderful Dr. David Greeley of Northwest Neurological) had reached the end of his knowledge and what to try. But he still didn’t give up, and referred me to see Dr. Chris Valley, a naturopath who works at Arthritis Northwest. Dr. Greeley hoped that Dr. Valley might be able to bring a “fresh pair of eyes” to my situation, and approach the problem “from a new angle.” I agreed to see Dr. Valley, even though I’d seen a naturopath early on in my illness, and he’d been unable to help me. In fact, the day of my appointment, I almost cancelled, because I was afraid to face another doctor who had nothing but “no” for me. Nevertheless, I went. (Thank God!)

Dr. Valley asked me to tell him about my illness, how it started, how it progressed, etc. He listened intently, and asked a lot of very good questions. At the end of my spiel, he said, “Well, I think I know what you have.” My jaw nearly hit the floor, and I said something like, “You’re kidding! Really? What?!?” He said, “I think you have Systemic Exertion Intolerance Disease.” He went on to describe the disease and said it’s actually a new disease definition from the Institute of Medicine - only a couple of years old. The disease is characterized by exertion intolerance (duh) and non-refreshing sleep, both of which I have in spades! He said there is a neurological component as well as a muscle component (in the mitochondria.) He said my description of the onset of my illness was “practically textbook” as to how the disease begins. And he said the muscle shakes that I get when I contract any muscle is often a symptom - and he’s seen other patients with SEID who have the same shakes. (This is the first time ANYONE has been able to recognize what my muscle shakes are, and pin them to a disease.) He also said he had the benefit of 12 years of my medical records, full of tests showing what I didn’t have.

I was just stunned. Simply stunned. I used to imagine what I’d do when I got a diagnosis, and usually pictured myself sobbing hysterically in relief. When it really happened, I just sat there gaping at him for the rest of the appointment! My mind was really having a hard time grasping the reality of a diagnosis. And for weeks afterwards, I’d find myself thinking about what I should try next or where I should go to see more doctors. I would have to stop that train of thought and re-realize that I have a diagnosis and I can stop the endless search for the next attempt at a diagnosis/cure. Even now, almost 2 months later, it seems unreal to finally KNOW what’s wrong! Twelve years of wondering, searching, seeking - and finally I know! I feel like a ton of bricks has been lifted off my shoulders! It’s an amazing feeling!

So, that’s the good news - a diagnosis, at last! The bad news is that there is no cure for this. It is a chronic disease. However, there are treatments that can improve my symptoms, and Dr. Valley said he’s “very confident” that he can “significantly” improve my quality of life. He said that because I’ve gone untreated for so long, I have a very severe case of SEID, and he’s doubtful that I’ll ever be able to work again. (Sadness.) BUT, he said that with proper treatment and management of my energy, I should be able to be much more active - that taking a shower won’t always exhaust me, that I will be able to take the dog for a walk and do light housework and maybe even putter around in the yard a bit. In other words, I can progress to the point of a normal ‘sedentary’ individual - which for me would be AWESOME! I’ll probably never be able to ride a bike again (more sadness) or work out in any way (even more sadness) but if I can do normal everyday things without being exhausted, I’ll be thrilled!

I’ve started treatment with a prescription to help the neurological component, and some supplements (normally used by body-builders - LOL) to help the muscular component. And I can already feel a difference - my muscles don’t feel so awful. And I don’t feel so sick all the time. I still can’t do anything more, but at least I feel better. Dr. Valley said that the improvements will be extremely slow and gradual. His rule of thumb is 3 months of recovery time for every year of illness. For the math-challenged, that means that it’s going to take 3 YEARS for me to recover to whatever level of functionality I can achieve. Good thing I know all about being patient, having spent 12 years waiting for a diagnosis!

So, after 12 years of “no” I finally got a “yes.” I finally have hope. I no longer have to fear that I’ll just continue to deteriorate until I’m bedridden. I no longer have to keep struggling to find a doctor or a treatment. I can finally look at the future and see a better life. No, it won’t be the life I had hoped for (I truly planned to be racing bikes into my 70’s) but it will be a better life than I have right now - and that’s HUGE. Thank God for a YES!!

I Just Want to be Where You Are

There is a popular song on Christian radio, called “Where You Are” by Hillsong Young & Free. It’s all about wanting to praise God and be in His presence. Here’s part of the lyrics:

I'm lifting you higher, higher

There's nothing that I'd rather do

A sweet elevation of praises

There's no one I love more than You

…

God, I just want to be where You are

Where You are

I just want to be where You are

(Listen to entire song here.)

Doesn’t that sound nice? Doesn’t it sound holy? We’ll just stand here in church, praising God, and being where He is. After all, we know that “God inhabits the praises of His people.” (Psa. 22:3) What could be wrong with that?

Well, here’s the thing. Yes, God is present when we praise Him. God is always present - it’s who He is. Our awareness of His presence may shift with the wind, but never doubt that He is with us. (After all, Emmanuel literally means “God with us.”) But if you really want to be where God is, step away from your pretty churches with their amazing worship teams and music ministry, where everyone is “seeking God’s presence”, and go to the slums, into the home of a single mom trying to feed and clothe her kids; go to the jails, where a prisoner feels forgotten and unloved; go to the streets where a homeless person is trying to stay warm on a cold winter’s night; go to the nursing home, where someone feels alone and forgotten. For surely, God is in all these places. If you really want to “feel” His presence, reach out to those who are hurting. Feed the hungry, clothe the needy, befriend the lonely.

Now, don’t get me wrong, I love singing and worshipping God - anyone who knows me from church could tell you that! But if all we are seeking is some transcendent “feeling” of God’s presence, surrounded by the 4 walls of a church building, well, then we’re missing the whole point of the Gospel. Jesus commands us, over and over again, to feed the hungry and help the poor. His life modeled that example for us. The Kingdom of God is love lived out, not love kept within a church building. Sure, we can praise God - we should, for He is worthy of praise. But if you want to “find” God’s presence, I think you’ll have an easier time finding Him where people are in need and hurting.

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!