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 feeling better now and have since finished this. I 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 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 into the whole mix brings yet another dimension into play. With that in mind, I've tried to express some of the honest truths of this rugged Lyme journey I have experienced while balancing it with the hope of that faith. Why I suddenly feel compelled to post this now - days from Christmas - is beyond me. But I do, and it needs to be said, for myself, and perhaps for everyone living with 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 not easy, 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 absolutely believe God works in deep places and through ways we can't always see or understand. In the meantime, however, living in reality is unavoidable. It doesn't mean we aren't hoping, praying, and working for something better, we are, but we can't dismiss or trivialize 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 about this but have never endured a day of living with a debilitating chronic illness, much less years? That some people actually believe Lyme or other tick-borne infections 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 do.

I always try to be honest about living with Lyme, the many years I was misdiagnosed, and the ongoing repercussions. By sharing this, I hope to help bring better awareness and understanding. I also want to help advocate for the desperately needed changes in how Lyme disease is handled overall.

Having said that, I don't always go into a lot of detail about my ongoing health struggles, or what it's really like on a daily basis. Believe me, it looks a lot different on this side of the screen. And while it is wise to use discretion about how much personal information we share, I feel there are times it's needed and helpful to be more forthcoming about 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 myself. I am writing this for myself. But I hope it can help someone else too.

I truly believe there is a higher purpose in life, but I do want to share some truths about this long, hard journey. I wish I could somehow reveal everything that has 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 hardships and frustrations that no one else sees or understands except for those with us every day; 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 intricate and time-consuming because so much is involved. It's more of a disease complex, and the many chronic infections and inflammation involved take a significant 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 so on. It's something no one can understand unless you've experienced it for yourself, which is another reason to share our stories and possibly 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 get or understand; being misdiagnosed for so long certainly didn't help. 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 and to have your life completely turned upside down by it; to lose so much along the way and travel a path that is laborious, lonely, and so often misunderstood. It's also hard to fight people's insensitivities and judgments, 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 honestly 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 is, please don't talk about things you really don't 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. Stop it.

It is true I am better in some ways, and I'm really grateful for that. However, I'm still very unwell. 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 but would often fall back to 2 while occasionally falling up to 4. But I could only maintain a 3.

These past couple of years, I've been at a more consistent 4. And while I am glad for it, and while 4 is certainly better than 1 or 2, it's still a far stone's throw away from 10. I have fallen back to a 3 and am also having some 2-ish days again as I write this. So trust me when I say that I didn't just sit down and throw these words together. I've been working on this for a while.

On a majority of days, I look nothing like my profile pictures 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 apps, 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 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). The black and white version made me look better, but the color photo reveals the truth. Or at least as much 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 were functioning in my body before taking this next step. And because there were certain things she's been concerned about, me too. And although the weather was really nice that day, and 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 lunchtime 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 seemed.

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 every day. And because I'm showing you more of the true color me, and not just the black and white edited version.



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 biomechanics 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 disabled 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 on their wall, and just because somebody throws down a slab of cement or something resembling a ramp to get in the door, doesn't mean it's truly accessible.

This is precisely what one of my physical therapists 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 that not everybody would run to help me when out in public, nor would everybody care. She wanted to be sure I could take care of me 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. It's sad but true. However, I am so blessed to have my mother, who has been and still is 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 '90s 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 (in 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.

We'd get home early in the afternoon, and I would go straight to bed and crash hard. Sometimes, I'd sleep until the following day. Other times, I'd sleep until 7 or 8 o'clock that night, get up and eat some dinner, and then go right back to bed, not getting 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 hard work, especially over these past two to 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 a normal gait (walking) yet, and while I am still in a wheelchair, these are two of my most significant improvements.

I can now walk sideways or sidestep 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'd just fluctuate. So this is very encouraging. The joy of moving in this way and 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 the majority of the time. I mostly 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 that's exactly what it turned into over time. This is better also, but I still have days when I'm feeling bad or 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, numerous doctors visits, lab work, tests, therapies, and the continual quest 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 is 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 precisely 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 will 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 I don't need some fluffy cotton candy version when it comes to genuine faith. 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 apart 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 solid, honest kind that helps hold you 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 and desert 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 big fights. It's been banged up and bruised. It has scars, but it's real and hearty. And we've gotten to know each other better because we've grappled so much. While it's been excruciating a lot of the time (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 real, sustaining, colorful places, and the struggle of the past twenty years, have taught me more than anything else in my entire life. And while it has undoubtedly come with a cost, I honestly wouldn't trade this closeness with Him for anything.

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.

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

At times I have felt the true color me has challenged 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, often at the expense of truth. But here's the problem - that's not always reality.

Sometimes the stories are perfectly wonderful and lovely, perhaps even amazing and beyond what we could ever dream of or hope for. Many times, they are not.

We don't live in a fairy tale land where everything is always golden and ideal. We live in a real-world, with real people who have real problems. 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 to 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 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 essential 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, every part of it. True color me is still not well and still sits in a wheelchair. And there are days I still really struggle, even after all these years of various treatment protocols, therapies, healthy eating, prayers, ministry, and obedience. 

Yet true color me is also filled with greater wisdom and understanding. True color me has tougher skin and a braver heart. True color me is filled with deeper compassion, and a more vital inner beauty, trust, and hope, even for a better future.

True color me is filled with a faith that doesn't dismiss my suffering but helps sustain me through it. It's a tested faith that doesn't collapse when it gets too hard or even dark but knows how to hang in for the long haul and be salt and light. It's a faith that can withstand challenge and hardship while holding me in love, truth, and grace.

It's a genuine faith that knows my name. 

And I know His.  

Michelle Holderman
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