Monday, December 22, 2014

True Color Me: Honest Revelations Of This Rugged Lyme Journey

I wrote much of this several months ago (August) but then went into a stretch of feeling physically worse and had to put it on hold. I'm now feeling better. And I have since finished this and almost hit publish a dozen times but continually held back for different reasons. There are so many deep components to this complex disease that I often refrain from writing about it because I feel I can never fully address them all. But I've come to the conclusion that it just isn't possible. No matter how much anyone writes or speaks about this, there will always be something else or something more. Always. However, not writing at all doesn't accomplish anything either. I've also held back because I wondered what people would think or say after reading it. But they haven't had to live these past 20 years of my life either. I have. And factoring my faith in Christ into the whole mix brings yet another dimension into play. With all that in mind, I've tried to express some of the honest truths of this rugged Lyme journey I've experienced while balancing it with the hope of my faith. Why I suddenly feel compelled to post this now - days away from Christmas - is beyond me. But I do and it needs to be said. For myself, and perhaps for everyone living with chronic Lyme disease. 
~ Michelle

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I've discovered something over the past twenty years of this journey.

We don't always want the truth of our stories to be the truth of our stories. Because the truth of ours stories is often painful, ugly, and messy. Living that actual truth out is very difficult. But it is our reality and we can't pretend like it's something that it's not.

There are certainly good parts of our stories too; beautiful, wonderful parts. Parts that bring us joy and blessings. But it's those other parts that are so hard to deal with. And yet accepting the whole truth of our lives is important.

Anyone who knows me knows I am a woman of faith and hope. I believe God works in deep places and through ways we cannot always see or understand. In the meantime, however, living in reality is unavoidable. It doesn't mean we aren't hoping and praying for something better, or working hard towards it, but I don't think we're suppose to dismiss, trivialize, or sugarcoat the difficult, unpleasant parts of our lives either.

Feeling the need to hide the truth of what we go through because others think we should be positive and "not talk like that" is ludicrous. How ridiculous is it that we must explain and defend ourselves to people who think they know everything, but have never endured a day of living with a debilitating chronic illness much less years? That some people actually believe we're not as sick as we say we are, or that Lyme couldn't possibly make someone that sick, is really unbelievable to me.

That's really what all this is about. Sharing more of the truth of my story.

The truth I live.

The truth many live.

I always try to be open and honest about living with chronic illness - about Lyme disease, the many years I was misdiagnosed, and the ongoing repercussions of it. By being open, I also want to help educate and bring better awareness and understanding. I also want to help advocate for the changes that are desperately needed in the way Lyme disease is handled overall.

Having said that, I don't always go into a lot of detail about my ongoing health struggles; of what it's really like day in and day out. Believe me, it looks a lot different on this side of the screen. And while it is certainly wisdom to use discretion about how much personal information we share, I do feel there are times it's really important and helpful to be more open about the truths of this disease and how it affects real lives.

Honestly, this has been burning a hole in me for a long time now. I need to write this for me. I am writing this for me. But I hope it can help someone else too.

While I truly believe there is a higher purpose, I want to share some more truths of what this long, rugged journey is like. I wish I could somehow tell you all of the things that have happened but it just isn't possible. I'd have to write a book or two. Maybe three. Instead, I'll share this. So please read on, but read on knowing this has been my life for the past twenty years. It's honest. It's real. And it's from straight the heart (and perhaps the gut a bit too).

After twenty years, I sometimes feel lost in this ongoing battle. Many days have been a struggle to do more than just exist. At times, it feels like all the color of life gets sucked right out, leaving everything in dull shades of gray. Leaving me in the gray. It can be a challenge to hold onto your identity.

Clearly, anyone who is chronically ill has unique daily struggles. We have regular battles and frustrations we go through that no one else sees or understands except for those who are with us in it everyday. They go through this too. And while there are many different kinds of suffering, there's something uniquely difficult about physical suffering.

When Lyme disease is chronic or long term, treatment is usually very difficult and time consuming because so much is involved. It really is more of a disease complex, and the many chronic infections and inflammation involved take a major toil.

There are so many things that break down in the body over time. It's like a chain reaction; one thing leads to another and then another and another. It's something no one can understand unless you've experienced yourself, which is yet another reason to share our stories and possibly help save someone else from the long years of suffering so many of us have endured because of misdiagnosis or delayed treatment.

Like many I know with Lyme, I've been much sicker than most people really get or understand. And being misdiagnosed for so long did not help either. As I said, none of us can fully grasp what we've never experienced before, but I'm telling you it's really hard to be so sick for so long; to have your life completely turned upside down; to lose so much along the way; and to travel a jagged path that is so difficult, lonely, and often misunderstood. It's also hard to fight the battle of people's judgments and insensitivities, even within the medical community; even within the church.

Seriously, you wouldn't believe some of the things people say to someone who is chronically ill. Or some of the "advice" they feel the need to give. Unless you've been there and done that, you truly cannot know the depths of this hardship. Even then, we all have a unique experience because we are uniquely different people with unique biology. My advice: please don't talk about things you really do not understand. And while I'm on the topic, let me say that making someone whose chronically ill feel like they're not doing enough or that they don't have enough faith to get well is cruel. Please stop it.

It is true I am better in some ways than I used to be. And I'm really grateful for that. However, I'm still not well. That's often hard for people to hear and fully comprehend. So I want to add some personal perspective to it.

My doctor and I sometimes use a scale to help us both measure and convey where we believe my health is overall. On this scale of 1-10, with 1 being the WORST and 10 being the BEST, I have spent a great many years at 1 and 2 - my absolute worst years. In hindsight, I wonder how I really did endure it all.

Over the past few years I've been at a 3 out of 10. But I would often fall back to 2 while occasionally fall up to 4. But 3 is only what I could maintain.

These past couple of years, I've been at a more consistent 4. Yes a F-O-U-R. And while I am glad for it, and while 4 is certainly better than 1 or 2, it is still far from being a 10. And as I write this, I have fallen back to a 3 and am having some 2-ish days again. So trust me when I tell you I didn't just sit down and throw these words together easily. I've been working on this for awhile.

On a majority of days I look nothing like my profile photos on social media. I usually look much worse and often feel worse too. I sometimes use editing programs or filters to enhance my photos (as a photographer, I love using various editing tools and I love black and white photography). I also sometimes edit my profile pics. I know this is my choice, but it's honestly because I only want a decent looking picture.

But there is a line, and I find myself feeling compelled to be more real about that line, and the truth of my life. We live in a culture that thrives so much on looking good at any expense, it's sending a dangerous message. It's just not reality. And it's certainly not reality living with Lyme disease.

The photos below from September show an edited black and white (photo 1) picture of me versus the original true color picture (photo 2) of me. The black and white makes me look better, but the color photo reveals the truth. Or at least as much truth as it could capture.

And the truth of this photo is that I had just had blood work done in preparation for a new phase of Lyme treatment. My doctor ordered labs to see how things are functioning in my body before we take this next step. And because there were certain things she's been concerned about; me too. Although the weather was really nice that day, and although it felt good to be out, I wasn't feeling very well. I was really fatigued and running a fever, among other things.

After getting labs done, my Mom and I had lunch in the car. We watched this crazy-hyper squirrel run around the parking lot we were in, devouring nuts like they were going out of style, which made us laugh. We had some really good coffee too. This lunch time in the car was the highlight of our day. Simple joys really do mean the most.

We ate in the car because I didn't feel like getting out again. We also ran by my doctor's office to pick up something I needed, and then stopped for a few groceries on the way home. I waited in the car (this is where I am in the photos below). I was feeling sort of sad and weary, thinking about how long I've been sick, how physically tired I was feeling, what my labs would show, and how unending this all seems.

So why am I telling you this?

Because this was the truth of that moment. Because that moment reflects the bigger truth I've lived with for twenty years - the truth I still live everyday. And because I'm showing you more of the true color me, and not just the black and white edited version.

PHOTO 1 EDITED BLACK AND WHITE ME


PHOTO 2 TRUE COLOR ME

I am still in a wheelchair and have been for seventeen long years. I don't just use it occasionally or whenever I go out; I am in it every. single. day.

My gait and balance have been greatly affected by this. You don't realize how complexed the bio-mechanics of walking are until you can't do it anymore.

Let me just say it's extremely difficult to roll around when not feeling well, severely fatigued, or in pain. And thick carpet is not my friend. Neither is gravel. There are never, ever, enough handicap parking spaces in any given parking lot. Not anywhere. Nor are there enough public sidewalk ramps. And just because a building or a restroom has the little blue handicap sign slapped on the wall, and just because somebody throws down a slab of cement or a "ramp" to get in the door, doesn't mean it's truly accessible.

This is precisely what one of my physical therapist's drilled into my head years ago, as well as the wheelchair skills I had to learn and adequately perform before she would officially release me. She let me know in a very candid way not everybody would run to help me when in public. Nor would everybody care. She wanted to be sure I could take care of myself and get where I needed to go.

She was right. And while I'm never out alone, I've seen and experienced a hundred times over what she alluded to. Sad but true. However, I am truly blessed to have my mother whose been my caregiver and biggest supporter throughout this entire ordeal. We have creatively maneuvered many a ramp, sidewalk, doorway, and parking space together over the years. Trust me, every person in a wheelchair could tell you stories.

I was in physical therapy in the late 90's and early 2K's - for over five straight years. This was during the sixteen year period I was misdiagnosed; long before we ever knew I had Lyme disease.

I spent three of those years in therapy at Cardinal Hill Rehabilitation Hospital in Lexington, Kentucky (inpatient and outpatient). I used to have outpatient PT three times a week and would fall asleep on the way home because I was so utterly exhausted. My Mom was always deeply concerned about this; like it wasn't normal to be that wiped out after an hour of physical therapy.

And it wasn't normal. It was an indication of what we didn't yet know.

Anyhow, we'd get home early in the afternoon and I would go straight to bed and crash hard. Sometimes, I'd sleep until the next morning. Other times, I'd sleep until 7 or 8 o'clock that night, get up and eat, go right back to bed, and not get up again until morning. Eventually, I had to quit physical therapy altogether because it was just too taxing for my body.

I also used to have a lot of major vertigo. It was absolutely awful to go through. Another one of those things no one can understand unless they've experienced it themselves. I might have an occasional flare up, but it's nothing at all like it used to be. All I can say is, THANK GOD FOR THAT!!

As a result of much treatment and much hard work, especially over these past two-three years, my balance and movement are way better than they've been in a very long time; actually since 1997, which was the year I first went into a chair. And while I still do not have normal gait (walking) yet, and while I am still in a wheelchair, these are two of my biggest improvements.

I am now able to walk sideways or side step around my bed, down the length of the kitchen counter, along the railing of our deck, etc. I do need something to hold to or have contact with. Some days I can go longer and further, and some days I cannot because I don't have the energy or my legs feel too weak.

The fact that I've been able to maintain this improvement is big. Really big. I've experienced improvements in other areas before but couldn't hold onto or sustain them, or they just fluctuate. So this is very encouraging. The joy of being able to move in this way and of being more solidly balanced is almost hard to describe. It is a freedom I've not had in years. And it's a significant improvement.

I'm pretty much home a majority of the time. Mostly, I only get out for my doctor appointments, lab work, or other pressing or necessary matters. If I'm having a better day I might feel like going out for lunch, but not often. I am also careful of getting out around a lot of people, which my doctor has cautioned me about. Especially when "stuff" is going around.

I was bedridden for many years. Long stretches of days and weeks at a time with very little reprieve in between. It didn't start out that way but over time that's exactly what it turned into. This is also better, but I still have days when I'm feeling badly or am more deeply fatigued and I'm right back there. I've been having some more of those days again. However, I am happy it's not as bad as it used to be.

It's been odd watching my friends and peers move on in theirs lives. It's usually the normal progression of getting older; furthering careers; buying houses; perhaps getting married; starting families; raising kids; doing life. A few are even becoming grandparents. Believe me, I know no one has a perfect life, and I want them to be successful and happy, but I cannot relate to those things. My adult life has been nothing like that. Mine has been filled with deep ongoing sickness, myriad doctors visits, lab work, tests, therapies, and the continual fight to find answers and get well.

There have also been many rugged places with my faith in this journey.

I've always tried to be honest about this too, so let me tell you something I've learned.

Trusting God and praising Him in the storm are not always easy to do, especially when the storm has raged on for so long. In fact, it's often the last thing you want to do or feel like doing. Many people give a lot of lip service to this when things are going easy and smooth, but when things get really tough and uncertain, when the rubber actually meets the road; it's a whole different story. This is why no one should criticize or judge what they've never had to live with or go through.

I learned a long time ago I can still trust Him while not understanding Him, which is exactly what He's after. He is far more concerned with our trust than our always understanding Him. As long as we live, we'll never fully understand everything. Trust is big with Him. Still, I know it's not always so easy. But something does happen when you choose to trust Him anyway; despite all the reasons you have not to.

When bad things happen to us, or someone we love, it's normal to question or struggle with our faith. We often beat ourselves up for this, but if our faith means anything at all, it can ultimately endure our deepest struggles, questions, and even our doubts. How can our faith mean anything if it's never challenged?

On the flip side of this, I also believe that in our desire to be faithful to Him, we shouldn't forget to be real too. God's not into fake or plastic living. Neither am I.

I don't know about you, but when it comes to genuine faith, I don't need some fluffy cotton candy version. I don't need a looks-good-on-the-outside-but-has-no-real-substance-on-the-inside version. And I certainly don't need a hyperchurchy version, meaning it's all good behind the four walls but falls a part otherwise.

None of these "versions" have enough authenticity for me. None of them have the true empowerment I need to help me through my real life.

I need the honest kind that helps hold you even through the worst storms of life. The kind that keeps breathing through the ups and the downs. A faith that's as much alive in the valley as it is on the mountaintop, which usually means you'll wrestle with it. And my faith has certainly been worked over. A lot.

We've had some fights. It's been banged up and bruised up. It has scars, but it's real and solid. And we've gotten to know each better because we have grappled so much. While it's honestly not been easy, it's actually been extremely painful and difficult (like pull-your-hair-outta-your-head difficult); it has brought me into deeper, sweeter places with Jesus.

Real places.
Sustaining places.
Colorful places.

These places, and the struggle of the past twenty years, have taught me more than anything else in my entire life. And while it has certainly come with a cost, I honestly wouldn't trade this closeness with Him for anything.

It's true I never thought or expected my life would look like it does. Some parts have been so difficult; I really have no words for them. But I also know it's not the end of my story either.

I know there's more.

Still, I won't deny what I'm going through or the truth of how hard it's been. Ironically, (perhaps it's more telling to call it divine irony), I feel my healing, recovery, and destiny are all tied into this path. And what other way is there to get to it, but go through it?

At times I have felt the true color me has been a challenge to some people's personal beliefs and theology. I've even felt some prefer the black and white edited version of me because it's easier for them to deal with and make sense of. And I think this is really a reflection of our culture as a whole.

Society likes pretty pictures and pretty stories (sadly often at the expense of truth). Yet here's the problem: that's not always reality.

Sometimes the stories are perfectly wonderful and nice, perhaps even amazing and beyond what we could hope or dream for, but sometimes they're not.

We don't live in fairy tale land where everything is always golden and ideal. We live in a real world, with real people, who have real problems, heartbreaks, and needs. And we all need real help for our real lives from a real God.

I believe one of the most courageous things a person can do is stand in the truth of their real life story; the good, the bad, the beautiful, and the ugly.

I'm not saying we never progress into greater or better things or learn how to walk in deeper faith. And I'm certainly not dismissing how God can bring change, healing, and restoration. I am saying living authentically is important and necessary. And that's what this whole post is really about - living life in true color, if you will.

True color me reflects the whole truth of my life; all of it.

True color me is still not well and still sits in a wheelchair. And there are days I still struggle; even after all these years of various treatments, healthy eating, prayer, and obedience. Yet true color me is also filled with greater wisdom and understanding. True color me has tougher skin and a more tender, braver heart. True color me is filled with deeper compassion and humility. And also a stronger inner beauty and hope, even for a better future.

True color me is filled with a real deal faith. It's a faith that doesn't dismiss my suffering but helps sustain me through it. A faith that doesn't collapse when it gets too hard but knows how to hang in for the long haul. One that doesn't run from the darkness but shines light straight up in it. It's a faith that can withstand challenge and hardship while holding me up in truth and grace.

It is a genuine faith that knows my name. 

And I know His. 

~ Michelle

Michelle Holderman
Copyright © 2014 

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Under Our Skin (Lyme Disease Documentary)

Under Our Skin (Lyme Disease Documentary)
Watch Under Our Skin free at Hulu.com