In Sickness and in...MORE Sickness??

Originally Posted August 7, 2008

Marriage is hard. Mine's far from perfect. Of course, we all have challenges and circumstances that arise throughout our marriages, but living with a spouse that is chronically and often acutely ill is a BIG challenge...and an unending one. But add to that the fact that both partners in the marriage have illnesses. Now we're talking big-time challenges!

It's not like we had absolutely no idea what we were getting into. When we met, my husband had been a diabetic for most of his life, and I was just getting started on a, so far, 15-year journey into the world of the chronically ill. People warned us. They told me I would be a young widow if I married a juvenile diabetic. They told my husband he needed to prepare himself for the fact that I may never be able to have children. But in our first few months of dating, we went through some pretty big stuff. My husband was hospitalized with a bad case of pneumonia, complicated by his diabetes, and I almost lost him. I started having what we thought were seizures, memory lapses, terrible headaches, muscle weakness, and an overwhelming fatigue that was taking over my life. Most of my friends ran for the hills, I was hundreds of miles away from my family, my doctors told me I had mental problems, (for all you novices out there, that's doctor-speak for "I can't figure out what's wrong, so I'll blame it on the patient" oops! I think my cynicism is showing!), and my so-called "Christian" college repeatedly told me I was inconveniencing everyone with my illness. Our relationship stayed solid as a rock throughout all that, so we figured we could handle anything.

We had NO idea what we were in for. Multiple surgeries for me, multiple hospitalizations for him, 3 miscarriages, a medical-bill induced bankruptcy, losing our health insurance, changing health insurance, moving around to reduce our cost of living so I didn't have to work, selling our first home to pay off medical debts, getting sucked into a multi-level marketing business that further drained our finances and took its toll on our physical ailments, moving in with his parents, moving in with my parents, moving BACK in with his parents, changing doctors, getting fired by doctors, fighting with insurance companies for years to pay claims, giving up on traditional medicine and switching to alternative medicine, new drugs...new side effects, flushing the drugs and taking vitamins and supplements, taking drugs AND supplements, taking jobs and getting too sick to keep the job, getting fired from jobs because I had "seizures,"...you name it, it happened...in just 9 years of marriage.

How have we stayed together throughout all of these challenging circumstances? Why didn't we just cut our losses a long time ago? I'd love to give you a nice, spiritual answer and say Jesus brought us through it all. And He did. But it's not quite that simple. In fact, the answer would be too long to put in one single blog posting. So I'll start with the biggest reason and we'll revisit this topic many more times.

The biggest reason our marriage has survived is that we believe marriage is a commitment with God, to each other, to stay together for life. We believe that love, just like faith, is a choice...one that you make over and over again. I remember when our love was butterflies in the tummy, talking all night on the phone, singing love songs to each other, staring into each others' eyes...you know, the "mushy," romantic stuff. But now it's getting awakened at 3am because I'm having hallucinations that he's a cartoon character, sleeping on an uncomfortable chair beside my bed in the ER all night after working hard all day, dragging me to the bathroom on a wheeled office chair because I can't move my legs, forcing him to choke down cake icing because his blood sugar level has dropped to a dangerous level, waking up to soaking wet sheets in the middle of the night and trying to figure out if it was night sweats or one of us wet the bed, or leaving in the middle of a workday to come get me because I collapsed at the doctor's office from a cataplexy attack. Not quite so romantic. But it shows a lot more of what love is than the "mushy" stuff, because you know the other person made a conscious choice, in the midst of all the ugliness of reality, to love you in sickness and in...even more sickness.

That kind of love makes me see Jesus. He's the Author of that kind of love. The kind that looks inside my heart that is sick with sin and chooses to love me time after time.

What If God Was One of Us?

Originally Posted August 4, 2008

Do you remember that CBS show, "Joan of Arcadia"? It was about a teenage girl who literally saw and spoke to God, who appeared to her in the form of various regular people...a little girl, a cute teenage boy, an old lady, a garbage man, etc. He would appear to her and give her assignments, through which she would see Him working in her life and in the lives of others. When the show first came out, I watched a few episodes, but I remember thinking that it seemed really disrespectful and sacrilegious to reduce God to the level of a regular human being. So, in all my self-righteous glory, I quit watching the show.

Recently, the Sci-Fi channel began showing re-runs of the show. I started watching again, but this time, I had a different view of God, based on my experiences with Him over the past several years. I now watch the show and am often struck by how much Joan's experiences with God reflect His true nature. God may not appear to us in the flesh, but if we know Him, His Spirit indwells us, and His presence surrounds us. If we are fellowshipping with God regularly and watching and listening for Him to work in us and through us, we will see Him. And like Joan of Arcadia, He will ask us to do things that may not make a lot of sense to us at the time or may not be within our "comfort zone." But when we obey, we see how many people are affected by the ripple effect of our actions.

God asked me several months ago to begin writing this blog, but I just did not want to do it. Offer up the personal, intimate details of my life and my illness for people to read about on the internet? I was horrified at the thought. I have spent most of my life trying to cover up, hide, and mask the flaws, struggles, and imperfections of my life. Why would I just let people have an open window into my heart? Finally, kicking and screaming, I obeyed. But even in my obedience, I had my own expectations of how God would use me. I expected people who also have chronic illness to relate and be encouraged by my experiences with my health issues. Much to my surprise, God had another plan. I began to hear from people struggling with all kinds of different issues in life: finances, relationships, careers... We all have our own personal struggles with our faith, and it truly does encourage others to hear about how God has and continues to work in our lives to show His love for us and grow our faith.

Keep your eyes and ears open. God could be speaking to you through that person on the elevator, the cashier at the grocery store, the receptionist at your doctor's office, or that driver that cuts you off on the interstate. Be careful, or you might miss an opportunity to obey His will for your life for today...for this hour...for this moment.

"Be still and know that I am God." Psalm 46:10

He Sang to Me

Originally Posted July 23, 2008

"The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." (Zeph.3:17)

We went down to St. Pete to see my narcolepsy specialist this past weekend, and I brought a list of questions. I'm a big fan of lists. Basically, I wanted to know what to expect from these new treatments he started me on two months ago. It's been so many years since I felt well, that I'm not sure I would recognize "well" if I felt it! I wanted to know if my cataplexy attacks were ever going to go away completely. Would I ever be able to drive again? Would I ever be able to have children? Will the constant fatigue be with me for life? I wasn't prepared for his response.

My doctor, the wizard of narcolepsy, just kept sighing and shaking his head. He'd had such high hopes for my treatment, but I'm just not progressing the way he expected. He hands me a folder about weight loss surgery. I cry. He says I won't get any better until I lose weight, but I won't lose weight until I get better. It's ironic. It's a Catch 22. A vicious circle. There are tons of cliches, but none of them could lessen the sting of the words that sent my emotions reeling. Who wants to be told their weight is out of control? Not a self-professed control freak like myself.

Apparently the trifecta of thyroid disease, PCOD, and narcolepsy/cataplexy are working against any hope for controlling my weight by any normal means. But surgical weight loss? Isn't that for FAT people? You know...other people...not me. People who just sit around and stuff their face with pie, potato chips, and cheeseburgers. Not people like me...not salad eating, water-drinking, vitamin-taking, protein-shaking, carb-counting me. Surely I can control this without surgery. But the truth is, it's been spiraling out of control for 8 years. I can see it in the looks I get from friends and family who don't see me very often...in photographs (who is that fat chick standing next to my husband?)...in the numbers on the scale. Something's got to change, and diet, exercise, and a positive attitude ain't gettin' it done! He says without the surgery I'll just keep gaining weight until I'm one of those people that has to have a crane remove them from their bed. Lovely visual.

Oh, but there's more. He tells me that I can't be pregnant on my narcolepsy/cataplexy meds, and I can't go off them. So pregnancy is not an option for me. I knew that it wasn't an option right now, but I had hope for the future. Of course, God can decide to change all that with a miracle. But medically, logically, factually speaking? Not gonna happen.

Ok...but I'll be able to drive soon, right? Driving?...I need to forget that and focus on a little thing called breathing! Even with the GHB knocking me into oblivion every night, I'm still waking up 47 times in 60 minutes, gasping and choking for air. And the aesthetically-appealing CPAP mask is getting ripped off in the night during my hallucinatory dreams of being smothered, tied up with ropes, and choked. He tells me I either keep the mask on, or I suffocate...especially if I lie on my back. He gives me a t-shirt with a pocket sewn on the back so I can stuff a tennis ball in there to remind me not to roll onto my back, just in case I rip off my mask in the night. So now, instead of looking like Darth Vader, I get to look like Quasimoto in bed. How romantic.

We have a 5-hour drive home, and I'm sitting in the passenger seat trying to hold back the outburst of tears that is inevitable. And then Natalie Grant's song "Held" comes on the CD player. My husband looks at me and asks if he should turn it off, and I say, "No. I need to hear this." She sings,
"Who told us we'd be rescued?
What has changed and why should we be saved from nightmares?
We're asking why this happens
To us who have died to live? It's unfair.
This is what it means to be held.
How it feels when the sacred is torn from your life And you survive.
This is what it is to be loved.
And to know that the promise was
When everything fell we'd be held."

God sang to me. He reminded me that because of my suffering I have the unexplainable, unfathomable experience of knowing how it feels for Him to hold me and love me when everything around me is falling apart. God sang to me in a pickup truck on Highway 75.

What to Expect When You're NOT Expecting

Originally Posted July 15, 2008

Two of my dearest friends are expecting babies, and I am SO happy and excited for them! Especially my friend who also has PCOD, polycystic ovarian disease, which is a leading cause of infertility. I remember when she told me she was pregnant. She was so afraid to tell me because she thought it might make me sad. You see, my husband and I tried for almost 8 years to have a child, and we have had 3 miscarriages, one in the second trimester. Having faced infertility herself, my friend was sensitive about my feelings on the issue.

I struggled for many years with the pain of the loss of the pregnancies and the grief of not being able to have a child of my own. I would cope by steering clear of the church nursery, finding excuses not to attend baby showers, and especially doing the best I could to avoid attending church on Mother's Day...oh, how I hated that holiday! The greeters at the door of the church would always shake my hand and wish me a Happy Mother's Day, assuming that I had children. When they would ask the mothers in the audience to stand and be recognized, I felt that everyone was looking at me and wondering what was wrong with me. I was afraid to hold babies or pay special attention to small children for fear that I would burst into tears. I probably gave the impression to a lot of people that I didn't even like children at all.

It seems like everyone my age has children. If I go to a ladies Bible study or any other activity, the conversations revolve around pregnancy, childbirth, and child rearing topics. Trying to relate, I would compare stories about my dogs and cats to their baby stories. I soon learned that a lot of people were inexplicably offended by that ("Are you saying my child is like a dog?"), so I would just stay quiet and hope no one noticed how uncomfortable I felt. Once I went to the first week of a ladies' Bible study, and we were all sitting in a circle. The leader asked us to go around the room and introduce ourselves. For some reason each lady announced her name and also the ages of her children. I felt my heart pounding as it came closer to my turn to speak. What would I say? I think I finally made a little joke about being the only one there without kids. I couldn't get out of there fast enough when it was over and everyone was discussing their children again.

Even family members who are aware of our situation would say the most insensitive things sometimes. Once when Jon and I were having a little disagreement someone said, "No wonder God hasn't given you children; you still act like children yourself." And if we would mention something about their child misbehaving at a family function, the comment was "come back and give me advice when you have children." Or another of my favorites..."Of course you're on time. You don't have any children to get ready." As if I wasn't already painfully aware of that fact.

If you haven't dealt personally with infertility, you can't know the emotional anguish, the tears shed, the time spent begging God for answers. The endless ovulation tests, pregnancy tests, charts, thermometers, special diets, vitamins, herbal remedies, hopeful trips to the doctor that end in yet another disappointment. You see people having children that have been married for like 5 minutes, and you wonder when it will be your turn. You hear a mother screaming at her kids in the grocery store, and you think, "Wouldn't I be a better mother than her?" And you watch the news and see stories of mothers dumping their babies in the trash or punching their toddler in the face and you question why God would allow these people to be fertile who literally hate their children, when you would give almost anything to have them.

It's only been very recently, as my faith in God grows stronger, that I can not only be genuinely happy for my friends that are having children, but that I can also trust and understand that God has a plan for me. I know that if God had allowed us to have children, our lives would have been so much more difficult as we dealt with my illness. We would have struggled so much more as we started 2 new businesses. We wouldn't have had the financial resources to take in my younger brother and help him get started in life. We may not have had so much time to spend mentoring some of the teens that we worked with for several years. I don't know all the reasons, and I may never know. But I know that God has things for me and my future that I cannot even imagine, and I know He knows my heart's desires and understands my deepest need. He is faithful; He is good; and He loves me more than I can fathom.

If you understand what I've been talking about, if you've been there too, let me share one of my favorite passages of Scripture with you...
"I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen. -Ephesians 3:16-21

Pity Party Postponed, Perhaps Permanently

Originally Posted July 18, 2008

We all have friends. There are the friends you can talk with for hours about nothing...and everything...and anything. Then there are the friends you call when you really need to hash out some spiritual issues and you need someone who will tell you what you NEED to hear instead of what you WANT to hear. It's funny how you sometimes avoid discussing something with the friend you know will tell you the truth...because you don't want to hear it. You just want to whine, complain, and commiserate. Well, I recently had a friend do me a favor: she called me out on some stuff. And she did it with such grace and love that I didn't even feel rebuked, although I certainly had been.

I had been feeling a little sorry for myself. I mean, I had hired the party planner, ordered the cake, and had hung up the balloons and streamers for a full-out Pity Party. I was feeling like I wasn't getting the love, the attention, the compassion, or the understanding I needed from my family or my friends. Look, let's be real here. I've been dealing with an acute illness for over 6 months now. I'm pretty much alone...in my house...by myself...most of the time. It gets a little bit lonely. Most of the time I don't mind. I have the world's cutest doggies and kitties around to snuggle up with, and I have beautiful, peaceful surroundings that I can just soak up. But there are days when it would be wonderful to get a phone call from someone that misses me in the places in my life that I hoped I was making a difference. And when the calls don't come, Satan whispers in my ear, "They don't care. They don't love you. No one misses you when you're gone. You're not important." And if I don't cast down those thoughts and bring them into captivity with the Truth of God's Word, I start to feel pretty low.

So my friend calls, and I invite her to my Pity Party. Instead of pulling on the pointy party hat and joining in, she cracks out the Bible and just brings my party d-o-w-n real quick. She tells me that maybe, just maybe, I am expecting things from people that they can't give. People are never going to fully understand what I am going through physically...how could they? I don't even understand it half the time. And spiritually? Because of 15 years of chronic illness, I may have learned a couple lessons about compassion, about faith, about suffering, that some of my loved ones have not had to learn yet. Maybe I should be using those "gifts" God has given me to serve them, instead of expecting them to serve me. I'm expecting people to skip all the steps on the path that led me to where I am today and suddenly have this understanding that they could not reasonably be expected to have. Could it be that God has allowed me to have these sufferings, to learn these lessons, so that I can "comfort those in any trouble with the comfort [I myself] have received from God" (2Corinthians 1:4). In other words, she reminded me once again that it's not all about me.

If you're planning a Pity Party, find yourself a real live Party Pooper to tell you the truth in love. Everybody needs a friend like that.

Proverbs 27:6 says, "Faithful are the wounds of a friend; but the kisses of an enemy are deceitful."

Thank God I'm a Country Girl

Originally Posted July 10, 2008

I live in the country. As in, we have a 1/4 mile dirt driveway, people wave at us when we drive by in the golf cart, and at night the stars are so bright you feel like you could almost reach out and touch them. When we moved out here a few months ago from the city, people couldn't believe we'd want to be "all the way out here." Are you kidding? Do I miss looking out my kitchen window and seeing the side of the neighbors house or hear them playing their music so loud in the driveway that I can't even have a conversation with my brother in the livingroom? Do I miss seeing on the news that someone got shot right down the road and hearing the search helicopters flying overhead? Do I miss people coming onto my front porch and cutting limbs off my lemon tree or breaking into my truck while it's sitting in the driveway? Yeah...no, I don't miss it at all.

One of the biggest questions I keep hearing from people is "what do you do out there in the country all day?" That question always makes me smile. Since I can't drive or go anywhere by myself, I just enjoy God's creation all around me. I always say that if you have to be "stuck" at home all the time, this is the place to do it. There is so much beauty and so much to learn and enjoy. It's hard to be lonely and depressed about being sick and housebound when God has created so much wonder to explore. It's great to watch the dogs just running and playing tag around a bush. I sit and listen to the peace and quiet and hear the songs of all kinds of beautiful birds. One night, I just laid on the driveway and looked up at the stars while Psalm 8 began to go through my mind. "When I consider thy heavens, the work of thy fingers, the moon and the stars, which thou hast ordained: What is man, that thou art mindful of him?" It's such an overwhelming worship experience to sing and give praise to the Lord under a canopy of stars.

I often feel that I am a student and God is my personal tutor. Lately, he’s been using a lot of little things in nature to teach me. Right now our citrus trees are being attacked by aphids and swallowtails, but amazingly, it taught me a lesson about how Satan uses all kinds of things to attack our lives as Christians and keep us from bearing fruit. Then I found out that we could buy ladybugs and bring them in to eat the aphids. I never knew that ladybugs had any kind of use at all. It always seemed like they just sat around and did nothing, and sometimes they were even annoying. But they are needed to help protect the plant and eat the pests that will destroy it and keep it from bearing fruit. That just made me realize that we really all do have a purpose in God’s plan. Just a little reminder that He has a purpose for me too. So that’s where I’m at right now…just a student in God’s classroom, trying to stay alert to see the lessons all around me that He has for me to learn.

What do I do out here all day? I watch, I listen, I worship, I learn at the feet of Jesus. I am so thankful for this beautiful place and for this time He has given me to slow down and observe His creation and draw closer to Him.

"The heavens declare the glory of God; the skies proclaim the work of his hands. Day after day they pour forth speech; night after night they display knowledge. There is no speech or language where their voice is not heard." Psalm 19:1-3

Looking Back

Originally Posted July 6, 2008

We spent the early morning hours of our July Fourth in the ER, after I took a little trip in the ambulance in the middle of the night. Something about waking up feeling like my skin was on fire, yet having chills; a severe headache on ONE side of my head; and a few hallucinations regarding someone choking me and screaming about not being able to find "the baby" (we have no children in the house). It wasn't a long hospital visit. They determined that I either wasn't getting enough oxygen to my brain in my sleep due to my sleep apnea (I had apparently ripped off my CPAP mask during the night at some point), or it was some weird side effect of my Xyrem. On the way home, my husband remarked that we had gotten off to a "great" start for our holiday weekend (sarcasm strongly implied here). But, after I caught up on some sleep, I actually started thinking how blessed I really am.

My last July 4 holiday marked the first time I was able to get out of the house and be among people following a surgery I had in early June 2007. The reason that memory made me feel blessed is because that surgery was the end of a four-year bout with constant, severe pain in my left side. I can remember the first time I felt the pain...the pain that was my constant companion and worst enemy every moment of every day. Having had a large growth removed from my left ovary at age 16, I immediately suspected something of the GYN nature was the cause, and my doctor concurred. In September, 2003, I had my first of three surgeries to treat endometriosis. The longest I ever felt relief after surgery was a couple months; then the pain would return stronger than ever. I had been told mine was a comparatively minor case of endometriosis and I "shouldn't be feeling this much pain." I would be given strong pain medications that I took all day long until by body became dependent on them. Once that happened, my doctor would suddenly stop prescribing them and refer me to a "pain clinic."

There were late-night ER visits when the pain would come, and I literally couldn't even catch my breath. My husband would find me on the floor, curled into the fetal position, crying and rocking back and forth. We'd call the doctor, and they'd tell us to go the ER. They would inject me with narcotics and poke and prod around; then they'd write me a prescription for 10 pain pills and refer me back to my physician. I was treated like a criminal, a junkie, and a liar. I even had a white-haired ER doctor tell me that I'd become "a slave to my female organs," and that, after all, back in the day women would "have a baby in the morning and be out pulling a plough in the afternoon." I wanted to scream, but I was in too much pain to point out that since he didn't have any of those female organs, he wasn't qualified to speak on how much pain I should or should not be feeling. I did have one well-meaning ER doc pump me so full of narcotics that I ended up being admitted to the hospital for a week for pancreatitis induced by those same drugs.

If it had been "just" the terrible pain, it would have been one thing, but there was also the difficulty urinating and the constant diarrhea. I was sent to a urologist and a gastroenterologist who both said nothing was wrong in those departments. Then there were the side effects from those horrible Lupron injections. I would have the most intense hot flashes at the most inopportune moments, and people would say, "you're too young to have hot flashes!" And the nurse that gave the monthly injection even asked, "Why are you taking these shots? Don't you want to have children?" (In my mind, I would reply sarcastically, "Yes, of course, I really do hate children.") It was amazing how ignorant even people in the medical profession can be. I would take jobs and quit because I couldn't function at work while on the pain drugs. I went back to school to finish my degree, and had to drop classes or not finish the semester. There were times when I would not even be able to walk because each step would cause excrutiating pain. I actually got to the point where I was considering just swallowing a whole bottle of pain pills to make it all go away.

Finally, in 2007, after my GYN fired me as a patient "because he did not feel we were making any progress in my treatment." (translation: he thought I was a drug addict), I found Dr. Michael Fox. After a thorough examination he said, "I'm going to tell you something that will surprise you. You have endometriosis, but that is not what is causing this severe pain in your side." I sure was surprised! After 2 previous surgeries, Lupron injections, and all the pain and grief I had gone through for 4 years, I had the WRONG DIAGNOSIS? Yep. My pain was actually caused by a pelvic hernia. And, after being examined by the hernia surgeon, we found I actually had TWO pelvic hernias, one on each side. I was angry. I lost four years to the pain and the pain drugs because I was misdiagnosed!

But I had the surgery, and after a painful recovery, the pain was gone. I mean it was really and truly gone...for good. I remember going to a July 4th festival at my church about a month after my surgery. I could walk around, sit in any position, and there was no pain. I have been off narcotics and other pain relievers for a year now. And even though I am going through some other physical challenges now, and my 4th didn't start out so well this year, I really have come a long way. I am blessed. And that's not all! God has given me so many gifts that I would never have had if it had not been for this experience. God gave me a very special friendship with a neighbor who showed me His love during my recovery by taking care of me. My heart was open and prepared to receive the greatest lesson of my life so far when I participated in a Bible study called "Walking by Faith" by Linda Rothschild. And I met a new friend who had been misdiagnosed with Interstitial Cystitis and was suffering with the same pain I had suffered with, and I was able to refer her to Dr. Fox for the same surgery I had! My experience was able to be an encouragement to her and saved her from suffering many more years of pain.

I am not angry anymore. I am thankful for the opportunity to grow my fragile faith and come to know the One I long to know better than ever before. Do I still struggle with my faith? You better believe it! But read the Hall of Faith, Hebrews 11. Those remembered forever in God's Word for their faith had struggles too. Abraham's faith was so fragile that he thought he needed to help God keep His promise of a son; Jacob fought all night with the Lord because he needed reassurance God would be with him; and of course Joseph had doubts when he was in that pit his brothers threw him in, when he was thrown in prison because he refused to give in to adultery, and when the guy he met in prison forgot to keep his promise to help him get out after Joseph got him out and he got his job back in the palace. These people were not mentioned because their faith was always perfect and strong; they are held up as examples because they chose faith in the midst of their doubts and their fears. That's what I'm trying to do...Believe what I cannot see because I believe in The One who promised to hold me in his arms. He didn't promise I wouldn't have troubles, but He promised to be there and help me through it.

Even though I'm going through a hard time now, I choose to look back and remember how He delivered me before, and I know He'll do it again. And I can't wait to see the blessings that come from this latest trial of my faith. Let's come back next 4th and praise Him for those blessings too!! I'll meet you right here.

Never Alone

Originally Posted July 1, 2008


Recently I've been hearing a song over and over again in my head. The song is "Never Alone" by Barlow Girl. Have you ever heard the lyrics to a song and just thought, "Wow! It's like I wrote this song myself."? That's how I feel about this song. Lately, it has really felt like God didn't show up like He promised, and I'm left to meet these huge challenges by myself. I feel a lot like David in Psalm 10:1, "Why, O Lord, do you stand far off? Why do you hide yourself in times of trouble?" I mean, if I ever needed God to show Himself, it's now. It seems like just one crisis after another keeps hitting my family, and there doesn't seem to be any reprieve.

A little over a month ago, I started treatment for cataplexy, which is an aspect of narcolepsy, a sleep disorder I've had for 15 years but was misdiagnosed and undiagnosed until a couple of months ago. It's been absolutely dramatic around my house with my falling down all over the house. I've gotten trapped on the floor of my bathroom for hours, fallen in the pantry and gotten my fingers entertwined in the wiring of the shelves, gotten stuck on a chair in the livingroom while the oven timer loudly reminded me the turkey breast should have been taken out of the oven 45 minutes ago, and had the doctor call 911 in his office because I had an attack, and he didn't know what cataplexy was...neither did the paramedics!

That's not to mention the memory lapses. I have a symptom of narcolepsy called automatic behavior. Automatic behavior is when you can have a conversation or even do an activity you've done a lot, all the while being completely unaware you're doing it. Let's see...I've eaten 3 huge bowls of Raisin Bran in a row (and we won't talk about what THAT much bran does to one's colon!), sat in the car on a bridge for 2 hours while the rescue personnel went back and forth to aid in a serious accident up ahead and then had absolutely no recollection of the event later, and even fed my poor cats several times because I couldn't remember if I'd done it or not. I've started questioning myself constantly about whether things have really happened or if I've told people things already or not. It's actually pretty unnerving; I mean, you're constantly wondering what horrible or embarrassing thing you've done that you don't even know about.


My poor husband has been so exhausted, constantly checking to see if I'm still breathing when I have a cataplexy attack, trying to convince me that, yes, he DID tell me that already, dragging me across the floor because my legs won't work, and waking up in the middle of the night to comfort me when the night-time hallucinations take over. The man is practically a saint...having the responsibility of running a small business and taking care of my teenage brother and me with all my "high-maintenance" needs, as he calls it. The guilt alone of asking him to help out around the house when I've been home all day and he's been working sun-up to sun-down weighs heavily on my mind.


Throughout this time, I've found myself wondering where God was during all this. He said to call on Him and that He'd always be there, right? So....what's up? That's where the song says, "I hold tight to what I know: You're here, and I'm never alone." So many times I've found myself curled up in the fetal position on the floor, trying to sob out those words to remind myself of the truth. Satan likes to whisper in my ear that God has forsaken me, my church has forgotten me, my friends are tired of dealing with me, and my family is seeing me as a burden. These thoughts lead to the ever-present questions: Why am I here? What good can I possibly do in the world when I'm stuck at home all day just struggling to exist? Why doesn't God just take me home where I can sing songs of praise to Him face to face, without all the physical and emotional pain?


That's the time when I grab the Psalms. It's SO good to know that a man like David... a worshipper like me, a musician like me, an emotional person like me, a person who has made many mistakes like me...would struggle with feeling God's presence in the hard times, just like me. But if you keep on reading in Psalm 10, after he asks God why He's hiding, He tells God that he remembers that "You hear, O LORD, the desire of the afflicted; you encourage them, and you listen to their cry, defending the fatherless and the oppressed, in order that man, who is of the earth, may terrify no more." David doesn't see God or feel God, but He knows God is there and will deliver him. That's where faith comes in. I don't know why God is allowing this suffering; I don't know why I feel so helpless and alone. But I know GOD IS....everything I need. "So I'll hold tight to what I know: You're here, and I'm never alone."


Lyrics to "Never Alone" by Barlow Girl:


"I waited for you today
But you didn't show No no no
I needed You today
So where did You go?
You told me to call
Said You'd be there
And though I haven't seen You
Are You still there?


I cried out with no reply
And I can't feel You by my side
So I'll hold tight to what I know
You're here and I'm never alone


And though I cannot see You
And I can't explain why
Such a deep, deep reassurance
You've placed in my life


We cannot separate
'Cause You're part of me
And though You're invisible I'll trust the unseen"