Monday, February 5, 2018

Letting Go of What Was and Embracing What Is - An Update on Steve's Battle With Lyme

{Many of you have kindly asked for an update on Steve's health.  We are currently seeking the advice of a new doctor in Denver, and have just returned from Steve's first appointment, where he was given a thorough physical and had a number of labs drawn.  We will have a follow up appointment in a couple of weeks. There are more details below.}

From the outside edges of Denver, my view of the city is a skyline wrapped in a jagged silhouette of broad, purple mountains.  It seems as though I can almost feel them breathing - calm, strong, and steady.  Fresh air fills my lungs, and as the cold nestles into the deepest corners of my soul, I am suddenly awake to the presence of God.  That is you, Lord, calm, strong, steady. Steady like the mountains. 

I hold on to the image in my mind's eye, certain of the place where I will need to sit today - on the mountain of the Lord, who will be for me what I what I want to be for Steve and for our family.  Yes, He will be my calm, strong, and steady. And I trust Him.

In a couple of short hours we will walk through the doors of another doctor's office, hoping for something, I'm not sure we even know what anymore.  Answers? Help? Healing?  My expectations have been severed from certainty, for the two rarely go hand in hand. Four years and a dozen (plus some) doctors later can leave one feeling somewhat numb.

But, I must admit that if we left our babies at home to fly all this way, and all we got was some real kindness, compassion, and sincere understanding, maybe a fist-bump, followed by, I'm really sorry you're going through this, and I know it's hard, but don't give up, just don't give up, I'd be good with that.  That's a mama's heart, ya know? It may not be medicine for Steve, but it would be for me.  Selfishly.

I say that because sometimes I almost wish Steve's symptoms were more visible.  People often say to me, He looks fine, and he doesn't look sick, and well, I saw him the other day, and he sure seemed good to me.  When the comments are really a question, they feel like pin pricks filled with doubt.  Is he really sick?

I know that I speak for a lot of individuals out there, some of them good friends of mine, who also struggle with Lyme disease, all of its co-infections, and complications, when I say that what others see, isn't always what is.

Some days the pain and pressure inside the core of Steve's head leaves him staggering around the house looking for some kind of escape, because medication doesn't even begin to touch the pain. Other days, the muscle twitching that takes over his body provokes in him such uncontrollable anxiety that panic attacks ensue.  Exhaustion, muscle weakness, and brain fog also challenge his ability to function each day. Those are just a handful of the physical, mental, and emotional setbacks he has to live with.

Setbacks that others don't see.

And yet he, like so many other Lyme sufferers, has made a decision for himself to press on, to function in the world even though he feels completely dysfunctional.  To be honest, I don't know how he continues to work and to give so selflessly to our family. He is such a witness of generosity to me.

Nearly a year has passed since Steve's temporary relocation to Florida for treatment (more here and here).  My recollection of those long months of our separation is fuzzy. When people ask me how we got through it, my reaction is always the same, grace upon grace. The only thing that is crystal clear in my memory is the incredible kindness so many people showed us.  There was food delivery, babysitting, errand running, financial support, encouraging notes, thoughtful gifts and big, big hugs.  I'll never, ever forget the generosity shown to us. It still brings me to tears.

During those months of Steve being away was like running a marathon, and as he began to improve, I felt the strength to keep running the race here at home for him and for the boys. The joy that came to me from knowing he was feeling relief from his symptoms was almost overwhelming. I was SO happy!

Unfortunately, the great strides Steve made during his time in Florida were short lived.  About three weeks after being home, I noticed his symptoms began to return. At first they were slight, and very manageable, but as time went on, the frequency and severity increased.  Before we knew it, he was right back where he started, walking in the same painful, frustrating shoes he was in prior to his treatment.

I don't think either one of us really wanted to acknowledge just how big and discouraging the setback really was.  The very little we discussed of it stirred up so much frustration in both of us, I refused to talk about it anymore.  Anger is toxic, and it only makes Steve's symptoms more intense. With Lyme, disappointment only leaves you with one choice, and that's to march forward with whatever bit of determination and resolution you have left to find a healing.  So we march on.  And pray.

If this disease has taught me anything, it's that we are not in control of our lives. Not even for a moment.  I sometimes laugh at all of the headlines, tweets, and Facebook posts that start with, The Very Best Diet to Heal... or The Top Blah Blah Blah Everyone Should Be Doing Right Now, or If You're Not Doing XYZ, You're Never Going to Be Happy, Skinny, Healthy, Funny, Successful, Appreciated, or Loved.

Man those headlines sure have a way of making us feel like if we just plug in to a magical formula, everything will be a-okay.  It's simply not true. Sometimes the circumstances of life throw you down into the trenches.  Suddenly you find yourself in a place you really don't want to be.  It's human nature to asses the situation, gather up our courage and all the best resources, and put together a plan to get out.

Yet, somewhere within the persistent effort of digging and climbing, you have to pause for a minute, and face the truth that you might be in this trench for a reason.  The trench may be your life for a time.  And if it is to be your life at this moment, then embrace it, live it. It isn't easy, but there's a special strength and peace that comes from letting go of the life you think you've lost, from loosening the grip on what you believe life should be, and just being present to the here and now.

It may sound counter-intuitive, almost like you're giving up, or giving in.  But the opposite is actually true. It takes courage to think and to live this way, because it requires us to trust.  It is anger and fear that keep us from moving forward, upward, and outward.

Trust provides the necessary conviction and grace for us to keep digging, fighting the good fight, and hoping for Steve to be healthy again. And until he does, or even if he never does, we will not have lost a thing, because we have chosen to live, right here, right now.

As we move forward, day-by-day, cautiously optimistic that the treatment offered to Steve by the doctor in Denver will be fruitful, we pray that the measures we are taking will restore him to greater health.  Until then we live. Right here, right now, in this present moment. And, I am good with that.


  1. Your writing is so peaceful and trusting. What a gift God has given you in that insight and ability... I do hope it brings you comfort and assurance. Continued prayers, Susan ....❤️

    1. Thank you for your prayers and for your friendship, Lori! It is truly a comfort and a boost to our spirits!

  2. What an example of perseverance and faith you are. I will continue to pray.

    1. Thank you for praying, truly, prayers are the life-line that keep us afloat every day!

  3. you know you always have a prayer team up here in your court. We love you guys so much!!

  4. I am so sorry. I will continue to keep you all in my prayers.

  5. I think about you guys all of the time. It’s like being in a dark valley or tunnel, and the only choice you have is one foot in front of the other. I am so, so, so, so sorry. I know how it feels. The meds to make the pain better, for me, gave me severe depression and brain fog. The nerve meds (damaged nerves). At some point I had to choose between pain and having my mind back. What an awful decision to have to make. I don’t know how the support person keeps going- my husband is my hero. When I would cry, alone in my room, he carried us on his shoulders. The only choice is forward. There are no perfect words to say in prayer- God knows your heart. No special diet. There are a million tiny things that can help 1%, but slowly, I believe, the body wants to be well. It wants to heal. You are giving him the best chance to fight. Steve- keep going! I have a friend who fought Lyme for 4-5 years before things turned around. It can happen. Hour by hour, day by day. Stay strong and know, you guys are loved!

  6. Our dearest Susan, we offer all we have to you and the family. You have great courage and even greater faith that will help sustain you. We see and feel the daily struggles you as a wife and mom face. Sometimes we wonder how you do it......BUT YOU DO! As tears flow down my cheeks, I wonder how Bob and I can ever show you our gratitude, our sincere love for you as a daughter.

  7. Good luck to your husband, I'm sorry he's struggling and I know it all too well! I have been sick w lyme and coinfections on and off For 30 years. Treated for five years and and about 85% better. Found out my kids got it from me and we all five test clear of lyme and all that came w it and we are all so much better. Please reach out if there's anything I can do to help your situation. Follow my stem cell journey on Facebook at Kristina and Michelle's stem cells!.
    Lifting you up in prayer, Krristina


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