Ice, lice, find something nice, and don’t believe everything you think.

“In this world you will have trouble. But take heart! For I have overcome the world.” It is so easy to read only half of these words from John 16:33. When there are ice-days in April causing schools to close (or worse and scarier reasons for schools to close), and weekends spent treating the entire house for headlice, when everyone seems to be a critic, and even your own thoughts prove false –those are times the first sentence is all that seems to come through.

Even now, as May struggles to shake the cool, wet chill, and pet-, home-, and car-ownership show themselves to be costly in time, energy and resources, as coughs linger with evidence of other “bugs” still effecting the household, and a loved one is clear that he is “near the end” those three simple words deliver hope and a command. But. Take. Heart.

I drove behind a bumper sticker for some time that said “Don’t believe everything you think” and I pondered the phrase with amusement. It’s good advice. My thoughts easily weigh me down. But. Take. Heart. Joint pain, fatigue, immune system not what it once was remind me that Lyme remains part of our lives. But. Take heart! And, not that, as some assert, there is some well of strength in myself or my heart that will overcome the troubles of the world. No, I cannot end at “take heart!” -there is more. “For I [the I AM] have overcome the world”. In that I can take heart. One greater than me has already overcome all that this world troubles itself over.

Truth be told, the first bit of John 16:33 actually starts, “I have told you these things so that in Me you may have peace”. Starting there, it gets much easier to find something nice in what is part of our little world. Troubles included. In Christ we have peace. He has overcome. Feel that peace gently washing in, coating the troubles and the heart.

With that, some Fairy Tales lice-preventative shampoo, a lot of homemade household cleaner (and some dish-soap), flexibility of wardrobe and weather-dependent plans, some creative budgeting, and proactive prayer (a term my pastor recently gave me for what I ought to do with troubles and my own thoughts which may or may not be wisely believed), I walk in the promise of my Savior. I have peace in Him. He has overcome the world. Life is good.

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Ponderings

I came upon this blog post (What People with Lyme can Learn from the Disability Community) and just need to linger on some statements a moment:

  1. “People with disabilities are a unique minority, a group that any of us can join at any time.” –this is a fascinating statement. Since my work is in equipping communities to fully include persons with disabilities, and I often find myself in a conversation about fairness to various groups of people, this strikes me is poignant. We can separate ourselves from many groups of people, as we may not look like or behave like them. But at some point in our lives, we will all be part of this group. Testament to the philosophy that everyone’s lives are improved by including persons with disabilities (since everyone will at some point be a person with a disability)!
  2. “Learning more about the concept of disability helped me understand the limitations that Lyme disease brings with it. This allowed me to advocate for myself and to overcome the belief that my disease meant I could not be successful” –I have a few thoughts on this.
    1. First, that “successful” needs some defining. Redifining, actually. I am praying daily right now for several people close to me, for whom a “successful life” may never be a viable option. That would be, living independently/alone, working full time with benefits, with the freedom to go where they please in their free time without assistance, and maintain stability in physical health, relationships, location and finances. If that’s success, well, crap. But is it? What is success is rather living in Victory with struggles? Living in Victory with uncertainties, instabilities, in dependence. This is not the fun, the American, or the popular way of living. But this ain’t no Disney princess story. Maybe life is meant to be harder, richer, deeper, and of a different scope. My 96 year old grandfather says he’s had a good life. But he’s still here. IT’s not over yet! My grandmother with dementia feels guilt for not being productive. Other friends and family members are despondent because they “haven’t made it yet” (or made it and lost it). I simply want to say to all: Why do you think you’re here?! Why any of us are here?! And what does the LORD require of you? To act justly and to love mercy and to walk humbly with your God. (Micah 6:8). So, whether you eat or drink, or whatever you do, do all to the glory of Godnot seeking [your] own advantage, but that of many, that they may be saved. (I Corinthians 10:23-33) To me, that means, success is bringing glory to God, saving souls, walking humbly with God. If we yet have breath, our job is to praise Him. (Psalm 150:6)
    2. Advocating for yourself is a huge task, and one that some are better at than others. Support for self-advocacy is such a priceless gift. I know I could not advocate for myself, especially in regards to the battle for diagnosis, treatment, assistance, care, help, without the support network I have. For those who are not so gifted in the area of self-advocacy, with Lyme, or with other disabling conditions, who will stand in the gap? Here is where I believe The Church belongs. How? Again, the answer is simple, if difficult: humbly with God.
    3. “The limitations that Lyme disease brings with it.” -This phrase packs a punch. Lyme does bring limitations. Understanding disability indeed opens the eyes of a person to accepting the condition this disease brings to the body and mind. Praise be to God, the spirit is untouched by such diseases unless we give up hope and we let evil overtake our spirits with fear. That kind of disease is far more dangerous, devastating and long-lasting. Spiritual warfare deserves far more treatment than any physical condition, in my opinion. I am still living with limitations on my body and mind brought to me by Lyme, though I consider myself to be healed of Lyme. There are permanent weaknesses in my system, which I must be vigilant to take care of if I am to maintain functional health.
  3. “…you are not defined simply by your symptoms, society may need to change its norms so it can benefit from all that you have to offer, …you are a person first and foremost.” –This phrase too brings me back to the work of CLC Network, pioneering innovative inclusion practices. It also brings me back to how we define ourselves. Lymees (or Lymies, as referred to in the blog post), people with disabilities, and people in general. We are not defined by our collection of symptoms or labels or characteristics (good or bad). We are people, with things to offer to the rest of the world, with praises to offer to our Creator. The more of us that can live from that perspective, the more society will change its norms, and communities will actually benefit from what each person brings. We might just have a shot at seeing “Your Kingdom come, Your will be done on earth as it is in heaven” (Matthew 6:10) -Lord, let it be!

 

Get a move on

I have taken some calls lately that are stirring me to pray and to act.

One call was from a woman whose church wants to start something, and she wanted to know if I thought there was a need for such a ministry. I don’t have to ask that question. The need for helping Lymees get treatment keeps coming to me. Three other calls this week were Lymees seeking advice, direction, ideas, prayer, help. I don’t have a whole lot to give right now. But I want to change that. And I will give what I have –mostly, that’s everything on this blog: all that I’ve learned about and experienced.

So, here’s the new stuff I’m learning:

  • Lymestop is in both Idaho and in Wisconsin. Both doctors are Christians, whose faith has grown through their Lyme disease and the journey they have come through. Their work is genuine, though very different and can seem odd, even “quackery” at first. Their testimonies and knowledge are spot on. One of the best articles on Lyme disease I’ve ever read is Dr. Erlandson’s article, found here: Dr. Ben’s Lymestop Article. (His personal testimony is first, but you can skim past that and read about Lyme first, and go back to read his story).
  • Lyme light foundation will help fund treatment for persons under 18 years old. This is great news for kids! Find out more here: LymeLightFoundation.org.
  • I have got to get my ducks in a row and get some things going to fund people (no age limit!) getting treatment, 501(c)3 status or not –that can come later. God’s hand extending to hurting people on whom He has compassion, that happens now.
  • Ministry is not what you expect it to be. I always thought I’d be a missionary, or a “Suffering Servant” of Christ. Well, wake up call, doing the life I have is right where I serve. I’ve got to stop griping about it and truly be a “slave to Christ” as the apostle Paul so heroically puts it. (Ephesians 6:6) I’ve been no hero. Maybe never will be. So much room for humility. So many tasks to be done.
  • Daily reading of God’s Word is essential to life. Even reading passages that don’t seem connected or important at the time pumps the essence of life into your soul. Gives perspective. Gives grace. Gives solace and peace and joy and …well, everything you need.

Yay. So, who wants to help me found Victory Over Lyme, the Non-Profit organization to connect Lyme patients with treatment, and to raise awareness of the Lyme epidemic, how to live beyond Lyme, and the need for a test that can be performed when anyone comes to donate blood at a blood bank/drive. ?

God does not give us a spirit of fear and timidity but of power, love and self-discipline –2 Timothy 1:7 (see, didn’t I say God’ Word provides all we need? Now to just start living in power, love and self-discipline…)

Lessons learned and to learn again

In a recent time of busy conferences, travel, work, and my husband having surgery, I began to feel that “walnut in the back of the throat” as my daughter so descriptively put it. When she got it, I recalled many of my Lyme-taught home remedies for infections, such as Allicin (garlic extract) tablets, Echinacea pills, raw honey and lemon –all of which are antibacterial, and great at killing bad while supporting good bacteria in the throat and gut. She responded quite well, and bounced out of strep throat within two days. I was not so quick. During the 20 hour drive home from the conference, I began to feel the walnut, then the chills, shivers, and general ache of a fever. By midnight and home, I was a total mess. I took all the garlic, Echinacea, raw honey and lemon I could over the weekend, but still went to the doctor Monday morning, and got a positive Strep swab and the doctor noting “yep, that throat is nasty!” –and now, a week later, I am finally regaining strength and stamina, oh, and it doesn’t hurt to swallow any more!

Lesson recall: remember the remedies that work, and use them!

Lesson re-learn: my body does not heal as quickly, not respond as much to treatments as it used to. The immune system has been depleted, and it has had multiple and long-term exposure to medications, particularly antibiotics and therefore takes longer to “get over” things.

Got it. Now if I could just learn the remedy for busyness…

Oh. Wait. Lesson recall: “Come to Me You who are weary and heavy-laden, and I will give you rest. …for I am gentle” (Words of Jesus, in Matthew 11:28).

Lesson re-learn: The I AM who created and manages the entire universe for all eternity gives rest. He deals very differently with that tyrannical thing we call time, and He is gentle. (Immense thanks to John Swinton for presenting this idea again, at the 2018 Symposium on Worship at Calvin College).

on Disability And Faith Forum

The following was posted several days ago on disabilityandfaith.org, who asked me to write about why I share my story.

“One Body” for Everybody (Video)

Contracting a debilitating disease was one of the best things that happened to me.

Hard, frustrating, agonizing and challenging in every way, yes. My family was stretched, my kids had fill-in caregivers when I could not function, and my world became increasingly limited. I had to give up most of my part-time jobs because of my declining physical abilities.

CLC Network LogoOne role, however, was flexible to my debilitating health: my work with CLC (Christian Learning Center) Network.  CLC Network equips congregations and schools to glorify God through purposeful, innovative inclusion of persons with varied abilities. My abilities certainly varied, for years. But the ways God has used Lyme disease in my life is something I would not give up for any price. I blog about it and am often asked to share my story. Recently, Voyage Pictures collaborated with CLC Network to create “One Body”— a short video highlighting my story. More than this, though, the video helps to tell God’s greater story of which I have gotten a glimpse in-the-flesh.

I have found that many people write about or share their stories as a part of their healing process. It can also help people get beyond their situation in the hopes that their story will help someone else. I share these hopes, but I also found with Lyme in particular that sharing accurate, personal and helpful information is necessary because it is often overlooked. The disease is spreading at epidemic proportions, largely unbeknownst to the public. Even those who are infected with it may not be aware that this is what they are experiencing!

As I began participating in groups with other “Lymees,” I found another trend in the sharing of stories – a crusade to be heard. Lyme became their “cause.” And that’s when I realized I already have a cause, one which this disease simply brought into sharper focus for me: proclaiming God’s Kingdom on earth. The Church includes people of all levels of ability, health and faith. We are One Body – the Body of Christ.

Romans 12:5-6 tells us,

“in Christ we who are many form one body, and each member belongs to all the others. We have different gifts, according to the grace given us.”

And that is the epiphany of it all: that each member of Christ’s Body has gifts. We all must fulfill God’s call to praise Him at any stage in life, in any state or level of ability. My colleagues at CLC Network know this fully and are passionate about equipping communities to be places of belonging, where everybody brings gifts according to the grace given them, to worship in community.

I share my story, then, not because I need to be heard, but because people still haven’t noticed how hard it is for some bodies to be in a church building, or participate in corporate worship services or activities. Or they have noticed, but don’t know what to do about it. Or they simply need further encouragement and hope for the journey. “One Body” is for everybody.


Tory WhiteTory White, church services coordinator at CLC Network, has been involved in education and ministry for over twenty years. Tory has written curriculum for her church’s children’s ministry, as well as for Friendship Ministries’ adult inclusive Bible study, TOGETHER. She has edited several books, including CLC Network’s latest publication, Accessible Gospel, Inclusive Worship. Tory brings her experience in homeschooling, a degree in education, a decade of supporting inclusion at Zeeland Christian School, and victory over a debilitating chronic illness to serve families and churches in their efforts to include individuals of all abilities with excellence.

“Being a part of the CLC Network Church Division is like being enveloped by God’s grace itself. I was welcomed into it, having worked at Zeeland Christian School for long enough to fall in love with inclusion (and the kids!), and having the pleasure of being colleagues with Barb Newman in ministry for several years aside from that. How could I not want to share God’s blessing with other churches and communities? I do, and so I love the work of CLC Network’s Church Division!”

9k and one.

 

Capture2

There are moments when I have to pause life, like my kids “pause” me when I am reading aloud, so they can grab their fidget or coloring book or go to the bathroom. Today’s pause moment is brought to me today by CLC Network, the Calvin Institute of Christian Worship, many other generous donors, Lymestop, the amazing people who have cared & prayed for and supported my family and me, and is presented by Voyage Pictures.

 

Capture

On the clcnetwork.org/churches webpage

I just can’t wrap my brain around the fact that the video in which my Lyme life becomes part of a bigger story has over nine thousand views. Even if half of those are my own views of it while sharing it, that’s still very public. It shows the convergence of my personal journey and my work with the Church Services division of CLC Network. My life as ministry. I hope.  I could be concerned about how my hair looks in it, how I wish I’d dressed differently, or said something just a little better. (OK, it’s true, I do think those things!) But, just as with all the moments in life where I had to pause to ponder (of which Lyme has brought me many! Perhaps a future post will be all those ponderings), what I wonder right now is:  Lord, God, what are You up to with this?  Will You use it to bring hope to those who are suffering with Lyme disease? Will You bring hope to churches who struggle to be truly welcoming? Will You use it to minister to the lonely? Will You use it to encourage every Christ-follower to consider their part in The Body?

That seems like too many directions to go, too many hopes to lay on one thing -a 5-minute video is only just that, after all. But that’s the beauty of it all, as I’ve come to find out. The more I ask of my Heavenly Father, the more He shows me of His surpassing greatness, including His reach in this world. Even through one, small person, place or thing. One Body -His Body- is interconnected, so that when one part suffers, all parts suffer. When one part is absent, all parts are incomplete. When one part shares a victory, the entire Body rejoices. (See 1 Corinthians 12:26) One life is never lived without effect. My story is not just mine, but many peoples’ stories. Which is why I don’t know what to say when people thank me for sharing it –it’s never been just mine. And, anyway, from the start of my life of victory, my story has belonged to Him who authors it. The part of my story with Lyme, therefore, belonged to Him and His body already, even before I got sick. My biggest concern now is that I am well. He has healed me–and that means I have a responsibility to minister far more than when I was so ill and my limitations greater. Luke 12:48  convicts me, leaving me responding to those thanks thusly:  “How could I not share my story? He has required it of me.” This blog is one way of me giving my story back to Him to tell it where He wills. This video is another way, and I am astounded with gratitude at how many others have come into my story to get me through it, and those who have picked it up to tell it. I pray now for all those who hear it, and that we all as one join in telling the greater Story of God at work in His Body.

And a quick update: My husband completed treatment in Idaho for reinfection of a dozen Lyme infections and viruses, with great success! Dr. Smith once again has been God’s hand of healing in our family! And, once again, we have to thank our families for the above-and-beyond help to make this happen. And I am excited to share that Dr. Smith is now training others in the techniques! Lymestop.com/training

The disease strikes again!

Back to Lymestop again– I’m fine, but My husband has been feeling awful lately. Sure enough, we see dr. Tony. is reinfected. Re-treatment will take 3 appointments. So, we are working on extending this 1 night in& out operation into a 2 day health retreat. Lord willing we get him well (so his system is clean before having foot surgery in January!). Otherwise we see a doc in Wisconsin who has been trained in lymestop/CBT.