"Eyes Wide Open"...A Tribute to My Husband

June is a special month for my husband and me, and as has been my custom for the last couple of years, I would like to honor him by posting this tribute. He is my champion, my caregiver, and it is because of his support and strength that I am encouraged and inspired to keep holding on, to fight for better health. We are dancers (both ballroom and country/western), and have had the joy of being able to spend hours and hours on the dance floor. We have also had to face the disappointment of not being able to do that anymore. But both of us hold to the treasure of memories and the hope that we will be able to do so again. So for this wonderful man, who I love more than these words could possibly reflect, I pen this entry. Happy Anniversary, Gary...I love you!

I met Gary exactly 16 years and 7 months ago, although he doesn't remember actually meeting me then. To him, I was just a barrier, an obstacle in the path he was taking to the refreshment table at my first meeting of the Christian singles group, Equally Yoked. Gary had joined in the summer of 2001, but here it was in November, and he hadn't yet fulfilled his obligation to attend an orientation meeting, so he happened to be at the meeting for new members like me. I saw him from across the room and when I recovered from my breath catching in my throat, I knew I had to find out who he was. After the meeting, I marched right up to him, stuck out my hand, and introduced myself. He looked down slightly, mumbled something akin to "nice to meet you" and brushed passed me, straight to the refreshment table. I was only slightly deflated and thought, "At least now he knows my name"! I have since learned that telling him your name means nothing because chances are, he will never remember it, especially when there is anything sweet or looks remotely like chocolate sitting on a table to be enjoyed! And that was the sum and total of our first "meeting"...which, in fact, was a non-meeting of sorts.

Each month the Equally Yoked group would meet at the Texas Dance Depot in Irving, TX for a fun, clean, alcohol-and-smoke-free environment to meet people, Country/Western dance, and even take dance lessons. And each month, I saw Gary. Each time, my breath caught in my throat, "Ahhh, there he is!" But he wasn't looking anywhere near my level. No, he was looking over my head. I am 5'3", and he is 6'0", so in order to actually see me, he simply had to look down a few inches, which of course, he wasn't doing. Month after month. So I thought I'd nudge him a little...I brushed past him, saying "hello" or "excuse me". Nothing. Why, I even bumped right into him, and he didn't notice me! Until the week before Memorial Day in May of 2002, he never noticed me. At all. Believe it or not, though, from the moment I first saw him across the room, I knew this was the man I was going to marry. How I knew is one of those wonderful mysteries in life, but I knew, that is a fact.

So I decided that since he wasn't going to take any subtle hints, I was going to have to just plant myself by his side and let him see me. I got a big glass of water for fortification, wrote my name across the side so he could read it as well as hear it, drew up a chair and sat down. Never mind that he was sitting with several women and was trying to work out a trade (a dinner for a massage) with a massage therapist. Nope, that didn't matter to me. I flashed my biggest smile and introduced myself again, even telling him I knew his name was Gary. He asked me to dance and my heart was beating so fast to the rhythm of that polka, I thought I was going to faint. When we got back to the table, there was no time for very much talking because someone was waiting to ask me to dance. Eventually, when our conversation kept getting interrupted by requests for me to dance, Gary got annoyed with me and went home.

For some reason though, I suddenly became intriguing to him, and he checked out my Equally Yoked 'profile' (which, unlike in today's age of technology where everything is available with the click of a button, was simply a book with one page per person that contained a brief synopsis of who we were...our likes, dislikes, hobbies, interests and perhaps a picture or two). After a week or so, he called me via the voicemail system they had at the time and through a series of a comedy of errors, we finally connected. We talked for hours uninterrupted, decided to go out, and set a time and day for our first date. Well, I knew I had Lupus, and there had been several times in my walk with this disease that I had to come to terms with my mortality because I wasn't sure of what my future held. So when I decided to date again after my first marriage dissolved, the question of whether or not to tell the person I went out with and if so, when, was always a source of stress for me. "Do I say something or not?" "Should I wait?" "What if he doesn't ask me out again?" "What if I wait and he feels I lied to him?" So on one of those lengthy and wonderful phone calls, I told him. Everything. I figured if he wanted to walk away, it had better be now, before we even went out on our first date. But he continued to call me every day and we continued to get to know one another. Finally, he invited me to a meeting/dinner for those that participated in prison ministry missions. On that night, in his truck (which was unbelievably romantic because it was so ridiculously unromantic by fairy tale standards), as we were leaving that meeting, he asked me to marry him. It was 2 days before our planned "official" first date, and only 2 weeks after we "met" on the dance floor.

As our wedding date approached, I grew increasingly anxious, fearful that he didn't fully understand the ramifications of my disease and the full burden of marriage to someone who suffers from it. So a few nights after we got our marriage license, we sat down together one more time and I went over it with him again. I told him that when things get bad, they get really bad. His response was "God brought you to me. You are a gift, my 'Bride of Promise'. I am not worried about it, and I am going into this commitment with you with eyes wide open. Eyes wide open, baby!" How does a girl say no to that? Two days later, on a Wednesday, June 26, 2002 (and only 4 weeks after we "met" on the dance floor), we slipped away to the Justice of the Peace in Fort Worth (on my lunch break, no less!) and committed to one another...for better or for worse, in sickness and in health...for life.

I have to say that I have never in my life been more attuned to or felt more loved by anyone than my husband. Gary has been with me through every single dance step we've been able to enjoy, every single struggle to keep my footing, and yes...every single falter when I lost my footing altogether. Since we married, I have received other devastating diagnoses (such as CVID, Myasthenia Gravis, Autoimmune Vestibular Dysfunction, Vascular Ehlers-Danlos and others), and he has held true to his word on that night 16 years ago when he promised me he would never leave me and was going into this with "eyes wide open". He has carried me, helped me to the bathroom, assisted me with getting dressed, cleaned the house, done the laundry, cooked the meals, cheered me on when I was down, told jokes and made me laugh, held my hand when I've had surgery or have been too weak to hold my head up, slept in the parking lot at the hospital when I was in ICU, worked hard by holding down a full-time job and a side business, and sacrificed his own desires when he knew it would help me. For over two years he drove 300+ miles each way every 2 weeks so that I could get my life-saving infusions. I am pretty much homebound and cannot drive myself, but when we do get out, he faithfully and without complaint takes my power chair apart, puts it in the car, then puts it together again for me to use. Once I'm through, back in the car it goes...no matter how many stops we have to make. He does it each and every time without so much of a groan or sigh of fatigue or frustration. Is he perfect? No, and he will be the first to tell you that. But he is perfect for me. I am amazed at this gift that God has given me and am humbled that I was chosen as Gary's "Bride of Promise".

Validation, Support and Sweet Encouragement

"Great is Thy faithfulness, oh God my Father
 Morning by morning, new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord unto me!"

"For we are God's masterpiece. He has created us anew in Christ Jesus, so we can do the good things He planned for us long ago." (Ephesians 2:10)

We made our trip to Houston to see my neurologist this week, and while I will admit that I was very weak when I saw her, I am still encouraged because I believe that the treatment plan we have chosen is what is best for me. Am I exactly where I want to be in my journey with autoimmune disease? No. I could well do without the very long and ever increasing list of things wrong with me that make treatment complicated and difficult. That being said, I still choose to hold tight to my faith and do my best to maintain a positive attitude. After all, God has proven Himself faithful with mercies fresh and new every morning. HOPE springs anew in my heart, and I am refreshed.

I can no longer drive more than a few blocks, and since I am mostly home bound, with a few exceptions, I wanted to do something worthwhile with my down time. So a while back, I became a member of a few online support groups, hoping to reach out, to help someone, to make a difference. These groups are aptly named "support groups", as the whole purpose is to support, encourage, even to be a champion for one another so that difficult and painful days are not quite so...well... difficult and painful. Every day I read posts on the message boards, heartfelt words written by the chronically ill...words which cry out to, and often pierce, my heart. Some are uplifting, inspiring and funny, and others are evidence of pain, brokenness, sadness and loneliness. But the most difficult messages for me to deal with are those that display a sense of hopelessness and absence of self-worth. It is amazing how fragile we are when it comes to our own ideas about our personal value. I see it all the time: "My friends have all left me because I'm always sick" or "My family thinks I'm crazy", and even "Nobody 'gets it' and I'm out here alone with no one to care...why doesn't anyone care?". I shared some of this with my husband because he is so incredibly supportive of me, and his response was, "What do you all expect from people? I mean, what is it you want?" I was surprised by his question, then realized that it was born of a sincere desire to know. What really IS at the heart of a constant need to feel recognized by those around us, to have illness acknowledged rather than brushed aside as if it doesn't exist? I think it is a cry for validation. Many people with chronic illness have faced lengthy, painful and frightening periods of months...even years...before finally receiving a diagnosis, and more often than not, were misdiagnosed with depression or labeled a hypochondriac.

While I am not one to want to make my illness my identity, I do understand the need for validation...validation that I'm not crazy, nor a "collector of disease names"; nor is depression, while certainly understandable when one is constantly in pain and can never make plans with friends or family due to the ever changing nature of chronic disease processes, the main source of my problems. I don't think there is anything wrong with validation. That being said, I do not believe that my significance (nor that of anyone, ill or otherwise) lies in whether or not I am healthy, or can dance, or sing, or reciprocate a kindness for that matter. I am significant because I am me. Created to be much more than a walking disease, the Bible says I am a masterpiece, and I believe it. I am not one to hide my faith, and it is because of my faith and HOPE in a God who loves me that I can be strong in the midst of weakness, and joyful in the face of bewilderment and pain. An important element of that strength and fight comes from the support of friends, family, and others who know and understand.

"Two are better than one...for if they fall, the one will lift up his fellow..." Ecclesiastes 4:9-10

Many years ago, when my dear friend and heart sister and I were young mothers going through the bittersweet pangs of raising our children, we made a vow that no matter what was happening or where we happened to live, we would always support one another in prayers. Just as Moses had Aaron and Hur by his side during the battle of Amalek to hold his arms up when he was too fatigued to do it himself, we promised to do the same for one another. The Bible says that during the battle, as long as Moses' arms were lifted, the Israelites were victorious. (You can read this wonderful story of victory in Exodus 17:8-13.) Through the years--when we faced battles fought on a spiritual level, trying times during our kids' teen years, the stresses and strains of marriage (even the demise of my own marriage and starting a new life with my current husband), and the fight for health--we have kept our promise to one another. And God has proven Himself faithful through it all, strengthening our faith, our hope, and our friendship. The picture you see here is one of a sculpture that this dear friend sent me for my birthday a couple of years ago. It is a beautiful depiction of what support truly is, with one...weak, melted and poured out, scarcely able to stand...the other, standing in loving support, lifting her friend's face to bask in the merciful, healing and victorious light of our loving Heavenly Father. Each time I lift this beautiful depiction of a friendship rooted in faith and bathed in prayer close to my heart, I breathe a prayer of thanks for God's gentle reminder that He is with me always.

God bless you, I love you...

Kathie Lea

Imperfect, Yet a Masterpiece (originally written 5/6/2013)

"O Lord, thou hast searched me, and known me. Thou knowest my downsitting and mine uprising, thou understandest my thought afar off. Thou compassest my path and my lying down, and art acquainted with all my ways. For there is not a word in my tongue, but, lo, O Lord, thou knowest it altogether. Thou hast beset me behind and before, and laid thine hand upon me. Such knowledge is too wonderful for me; it is high, I cannot attain unto it." (Psalm 139: 1-6)

Every now and then my strength and resolve to put on a brave front escapes me, and my days are just plain hard. When my body will not cooperate with the simplest tasks I ask of it, and pain will not release its unrelenting grasp, I am exhausted and overwhelmed. And...I admit it...discouraged. 

Now, I realize that I have so much to be grateful for. What is that saying about complaining about not having any shoes until I saw someone with no feet? Yes, I am certain things could be much worse. But at the moment, I don't feel like they could possibly be any worse. And so I cry, believing that I have a God that loves me and understands what I am going through, trusting Him to hold me close and comfort me. After all, I am His child, His masterpiece...a creation that is "fearfully and wonderfully made" by His loving hands.  He knows me more intimately than anyone, and no matter how imperfect I am, or where I find myself, He is there to take my hand. (See Psalm 139: 7 - 18). And I am comforted.

Tomorrow will come, and I hold onto the hope that it will be a better day.

"Know ye that the Lord he is God: it is he that hath made us, and not we ourselves; we are his people, and the sheep of his pasture. Enter into his gates with thanksgiving, and into his courts with praise: be thankful unto him, and bless his name. For the Lord is good; his mercy is everlasting; and his truth endureth to all generations." (Psalm 100: 3-5)

Hope is the Thing With Feathers

"'Hope' is the Thing with Feathers"

"'Hope' is the thing with feathers --

That perches in the soul --

And sings the tune without words --

And never stops -- at all --"

~Emily Dickinson~

I came across a photograph online this week of a bird on a thorny perch. Singing. His eyes are lifted heavenward, and his throat is open in song; he is oblivious to the fact that the branch on which he is perched is full of thorns. His focus isn't on the painful place on which he stands; he sings with abandon without a thought of his difficult, unpleasant and stinging surroundings. I am reminded of the scripture that tells us that we should be like the birds and the flowers, who don't worry about anything because they know that their fine raiment, shelter, and food all come from their Father in Heaven, who loves them and cares for their every need (See Matt 6:25 - 34). I want to be more like that; I will be honest with you, though...sometimes I focus more on the brambles and the spiny, thorny circumstances that cause me pain; I allow those things to squash my trust, steal my hope, and silence my song. But God is ever present, speaks to me in the quiet stillness of the night, and reminds me that He is with me every step of the way. He is, in fact, my HOPE, my song. And I know that no matter what comes my way, I do have a choice of where my focus is, and today I actively choose hope. It perches in my soul and sings for me...and never stops.

Beauty and Refinement--It's All About the Process

Ever since I saw my first piece of crackle glass about 18 years ago, I have been amazed at its exquisite nature, delicate beauty and apparent fragility. Surely, something like this would shatter with rough handling, perhaps even a whisper of a breeze blown just the right (or wrong) way. And yet, if you know the process that leads to the crackle effect, you know that it is anything but fragile.

My draw to this type of art is born of a sort of kinship, if you will, to the character that is shaped by fire and ice, both extremes that, to me, represent the brokenness and pain, the struggles and the heartaches in life that refine us and make us purer, stronger, better. Hot and intense, the fire that begins the process of making crackle glass is painful, searing, even purging, as any impurities that remain in the glass affect the character of the piece and should be removed. Once the glass is white hot, it is plunged into a container of ice water, and the glass cracks on the surface. In order to smooth the inside, seal the cracks, and create a flat underlayer that makes it suitable for a variety of uses, the glass is then reheated. And reheated again, if necessary. Whatever it takes to perfect the piece.

I thought about this as I looked at the crackle glass soap dispenser I have in my bathroom. I bought it because I liked it, it matched my bathroom colors, and because it was made of crackle glass. But it leaks soap through the cracks, so I get frustrated with having to clean the soap off of it all the time. But the thought struck me the other day that I am much like that soap dispenser. To be sure, I am imperfect, not quite finished the way the Creator has planned, not yet the strong and pure vessel the Master Craftsman of my unique "crackle glass piece"...my heart and soul...has in mind, but still perfectly usable and lovely in the eyes of my Father. Like the soap that continues to seep from the cracks, I pray that the Spirit and Love that live within me seep through the cracks in the walls of my heart, spilling out on those around me to bring glory to Him.

I feel the intense heat that I know is building my character and making me stronger; I am fighting for my health, and this has been a burning, painful, bewildering and difficult struggle. Some days I don't understand it at all, and I am overwhelmed. But most of the time, I find healing and comfort that I have faith in a God that will never leave me and is lovingly helping me become completely usable for that which I was designed by refining me with heat, again and again. And through it all, I have no doubt that He has been with me and has provided support for me every time I needed it most.

"Behold, I have refined thee, but not with silver; I have chosen thee in the furnace of affliction." Isaiah 48:10"

The Quilt

Several years ago, I bought a handmade quilt in Branson, MO. The intricate stitching and the patchwork design caught my eye, and as an added feature, the sales lady told me that the quilt was reversible. I was sold. I simply could not leave for home without it. Now there is something about that quilt that is special to me. Perhaps it is that the trip to Branson was a birthday gift from my husband, or that our time away together was full of the kinds of stuff that beautiful memories are made of. Either way, I have a tangible (and functional) souvenir of that magical trip. And so I keep that quilt on my bed and run my hands along the patchwork design from time to time, as I wonder about the loving hands that created such a beautiful piece. Is there special meaning behind each of the squares of fabric that make up the design? Oh, how gifted is the quilter, who is able to take a needle in hand and bring such beauty to life!

To be honest, until recently, I have never put the reverse side of the quilt face up to be viewed, though that is what “sealed the deal” for me in the first place. The underside, though lovely, just seemed too simple. But one day I needed a change, and finally put the quilt on the bed with the underside in full view. But when I did, I noticed flaws I had never seen before. At first, I was disappointed and was going to put it back on the bed the other way, but I simply didn’t have the energy. The change back to it's "normal" placement on the bed would have to wait until I was feeling better. And then a picture came to my mind’s eye, and I could see my quilt as a lovely representative of my own life, and the reminder that though I’m stitched together by God’s loving hand, I am far from perfect. There are parts of me…whether by circumstance or by choice… that reside in quiet, often lonely, solitude. I don’t choose to place those parts of me in full view because they make me feel vulnerable, simple, and flawed. But God sees ALL of me, and has taken the patchwork of my life…the difficulties, the joys, the pain and the triumphs…and has lovingly stitched together a meaningful and warm design that has purpose. He has given me a host of friends and loved ones to encourage me, to pray for me, and support me. I feel loved. Indeed, even lovely.

So I’d like to thank each of you once more for encouraging me and for prayerfully supporting me. On those days when I spend my entire day alone, unable to get out or to speak to anyone for any length of time due to weakness, it is comforting to know that there are people who love me and are praying for me. I could not make it through those days with my sanity intact without that affirmation. I know that indeed, I am never truly alone. Each of you is a gift that I cherish…a special and treasured “patch” in my life’s quilt.

God bless you, I love you.

Kathie Lea

“Our lives are like quilts’ bits and pieces, joy and sorrow, stitched with love. ~Unknown~

Starting Over

I've been writing about my experiences with autoimmune disease for quite a while now, and I have decided to start my blog all over again. Please bear with me, as I will be transferring some of my favorite musings from Caring Bridge to this site. I don't know why, but I feel more comfortable doing it this way...I guess because I don't want my friends and family to feel they have to make a donation just to read my journals. 

My main purpose in writing is to share parts of my life with you...both the good and the difficult...so that you will be aware of what is going on, and as sort of a catharsis for me. This is actually my third attempt at blogging and I am determined to stick with it this time! To my friends and family...thank you for your support over the last 2 1/2 years. My prayer is that some of my experiences will help others as we continue to walk this journey together. So please pray for me, share this page as much as you wish...and let's get started!