Author: Susan Westbrook

The Courage To Believe The Line Is Really Trending Up.

This is a one page summary of a complex six year health struggle. The trend line represents how I feel, with the top of the chart being optimal health, and the bottom being the worst health. 

As you can see, I’ve spent a lot of time near the bottom. But as you can also see, I seem to be trending up.

Note I said “seem.” If I had a quarter for every time I thought I was finally turning the corner, only to find out the corner was not a corner, but instead a U turn, I’d be writing this post from Tahiti instead of snowy Minnesota.

I got to the point where I started feeling like the boy who cried wolf. I would tell people I was finally feeling better, only to have to backtrack days or weeks later when things turned south again. Over time, I’ve become very cagey about saying how I’m doing. I typically leave it at “hanging in there” or “moving along”. 

Per my previous post, lately things have been better for me in a way they haven’t in the past. I really and truly feel different this time. You might find this hard to believe, but when you’ve been sick for a long time, it takes a great deal of courage to believe you’re actually getting better. It’s like trusting love again after heartbreak.

Lyme has broken my heart over and over again, and I risk great disappointment by investing in the belief I am getting well. But what do I risk if I let fear get in the way of believing?  Much more, I think.

I’m staying positive, but am treating this as a fluid situation. I’m looking at it more as a transition. I am transitioning from being a patient who is enduring something to being a person who is overcoming something. 

And that’s my word for today. Overcoming. I can believe in that.

A Spiritual Moment, An Orange iPod, and Airborne Valium.

I can string this all together. Promise.

Let’s start with the spiritual moment. Before we get to it, I need to share something deeply personal and painful. I lost my beloved brother to cancer two years ago. He was 46, fit, and was in the prime of his life. He was extraordinary. He left behind a wife of 20+ years, two teenagers, an army of devastated friends and coworkers, and a shattered family. 

He was my older brother, and he was my hero. His death pains me in ways I cannot adequately express, and I’ll never get over it. But I will carry on, because that’s what he wanted. And that leads to the spiritual moment.

A few weeks ago I felt strong enough to go to yoga for the first time in a few years. Just being there was emotional for me, as it felt like progress and a new beginning. Somewhere in the middle of class when I was feeling particularly tuned in to my emotions, the most beautiful, heavenly, soothing music began to play. I was feeling the music deep in my soul, and and felt at once alive and vulnerable. I was thinking of myself and I was thinking of my brother.

After a few minutes of feeling this way I glanced toward the origin of the music and saw it was an orange iPod. This is significant because orange is the color we use to remember my brother. It’s ingrained in us now. Orange = Frankie, and he pops up in the most unexpected places. Like yoga class.

When I saw the iPod a voice inside me said “he’s here”. And I am telling you, I felt him. Deeply. I could feel him in the rhythm of the music. I could sense him flowing out of the iPod and running through my body. It was an indescribable moment of healing that penetrated my skin, my heart and my soul. In that moment he was alive with me. He was moving with me. I could almost touch him. Almost.

After class, I asked the instructor for information about the music. It turns out it’s a universal mantra for healing called RaMaDaSa by Snatam Kaur. You can listen to it here.

I have listened to this song over and over since that class, and it truly provides a healing vibration. I call it Airborne Valium because I cannot help but be comforted and soothed by it. If you are suffering in any way or are in need of comfort on any level, try this song.

Going in Circles to Win the Race.

Does it seem like my blog goes in circles sometimes? I think it does:  “Good days, bad days, keep the faith, stay strong, feeling good again, feeling bad again, blah, blah, blah.” It occurred to me my blog goes in circles because that’s how it is to live with chronic illness. 

Compare chronic illness to a “regular” illness such as a cold. You get the cold, you go down for a few days as the symptoms emerge, you hit the bottom, and then you start coming back up, usually in a straight line.

With my case of chronic Lyme Disease, I went down in a straight line, but coming up has been anything but. 

My life consists of good and bad spells. Sometimes a good spell can last for a month. Sometimes it only lasts a day or even a few hours. Same with the bad spells. I’ve learned that getting overly invested in either direction causes me to suffer emotionally. If I spend too much time thinking I’m on a straight line to wellness when I’m having a good day, it can be a crusher when the inevitable bad day comes. Thinking a bad spell will never end can cause me to get depressed, frustrated and want to give up.

Over the course of countless good-bad cycles, I’ve grown to understand and accept that the reality of my life is circular rather than linear. This acceptance has been critical to helping me find peace within the ups and downs.

Importantly, I am learning I leave most bad spells better than I enter them. You see, bad spells force examination: my doctors think about what needs to change in my treatment plan. I think about what I need to change in my head or in my daily activities. The result is I leave the darkness with a stronger mental fortitude, usually a tweak to my treatment plan, deep gratitude for how good it feels to feel good again, and more strength and wisdom for the next downturn.

So perhaps I’m going around in circles, but I am making progress with each lap. Just like the drivers in the above photo. They are vying for the Indy 500 trophy, one of the most coveted wins in all of racing. The race was first run in 1911, and in the long, storied history of that contest, nobody has ever won by going in a straight line.

Last Night’s Dinner.

For those of you interested in the Paleo diet, I thought I’d start posting some of the food I eat in the event I can offer any inspiration.

This is a very simple stir fry. The veggies are: carrots, green beans, mushrooms, zucchini, bean sprouts and bok choy. Resting below the veggies is cauliflower rice. If you can chop and stir veggies, you can make this meal.

These days, my fragile digestive tract is asking for very mildly flavored food, so I kept this simple by leaving out the garlic and onions I would typically use, and incorporated minimal seasonings. The result was a lightly flavored dish. The individual tastes of the veggies really came through, and I had a happy tummy when it was all over. 

Here’s how it came together:

1. I sauteed the veggies in a little grape seed oil, salt and pepper. I put them in the pan in the order of firmness – most firm first. 
2. When they were nearly done, I added a small amount of fresh ginger (tastes good, and good for digestion), and a few splashes of coconut aminos (basically soy sauce without the soy and MSG).
3. After removing the veggies from the heat, I finished them with a few splashes of sesame oil and honey ginger balsamic vinegar, then added a sprinkle of black sesame seeds. I purchase my olive oil exclusively from Stillwater Olive Oil (they ship) because they maintain high standards of purity. Most grocery store olive oil is rancid and contains free radicals, but that’s a post for another day.
4. The cauliflower rice could not be more simple. I simply chopped half a head of cauliflower into tiny pieces, sauteed them for about five minutes, then added about ¼ water, salt and pepper to the pan, covered and let simmer for about 10 minutes. So flavorful. 
5. My husband did the scallops on the grill with just a light touch of grape seed oil and salt.

That’s it. Dinner.

Check out the other tabs on my homepage for more information and inspiration about the Paleo Diet.

Enjoy.

The Good Days Always Come Back. The Good Days Always Come Back. The Good Days Always Come Back. The Good Days Always Come Back.

This is a scene from the evening walk I just enjoyed. The sun is a reflection of how I feel inside at this moment. Happy. Light. Shining through the clouds.

I’m near the conclusion of my third good day in a row. This comes after roughly six weeks of mostly bad days. When I go through a bad spell, I sometimes wonder if I’ll ever get back to the good days. I try to stay positive. I look for even the smallest reasons for optimism. But when you don’t feel well, it’s hard to be optimistic, and even harder yet to remember how the good days felt, or have any real hope of them returning.

Then a shift happens, and the sun emerges. Slowly at first, and then all at once. It’s a cliche, but the bad days truly make the good ones that much sweeter. I swim in good days. I have deep gratitude. I am fully aware of every good sensation in my body. More importantly, I’m aware of the bad sensations I’m not feeling. Oh, how good the absence of pain feels.

Days like today fill my soul. They give me strength. They provide internal sunshine. 

I’m grateful beyond words.

I Could Dance an Irish Jig Tonight.

I’m about to go bed, and I’m happy. It’s been one of those magical days when the stars and moons aligned, and my body actually knew what to do with the food I ate. Digestion is such a glorious thing when it works.

I ate a good dinner, and even had seconds. I still thought I could do more, so I had some almond butter and paleo crackers just to add a few more calories. I ate at least as much as my husband. When I was done, I felt like I had eaten, but nothing more. I wasn’t uncomfortable. I wasn’t in pain. I didn’t feel like I was being pulled to the ground by my stomach. I wasn’t short of breath. I didn’t feel like I couldn’t move.

These moments are few and far between. But the important thing is they happen. And that’s what I’ve been reflecting on tonight. My body IS capable of digesting properly. Not very often, but on occasion. I didn’t do anything different today than I do any other day, yet, today everything worked. This is the great mystery of my body. 

My recent setback has killed my confidence and dampened my spirits. But then a night like this comes along to remind me my body has what it takes. Why in the world it doesn’t work right most days is beyond me, but somebody somewhere will figure this out.

Until then, I need to keep the faith. Until then I need to sear this feeling into my brain because I’m going to need it the next time things don’t go well. Until then, I’m going to enjoy the simple pleasure of feeling well. 

Oh, what a night……..

I’m Having a “Thumbs Up” Day.

This photo is from a trip to Telluride two years ago. You can’t tell, but this is the top of a 5 mile roundtrip, 1,000 foot elevation hike. It was a significant accomplishment for me. I went at a snail’s pace, took a few rest stops, and lagged far behind the rest of the group. I was slow, but I made it.  (Don’t worry, I wasn’t alone. My devoted husband stayed at my side, as always). 

Some would question the wisdom of me even attempting the hike. Others might count me out all together. But I woke up that day, and decided to see what was possible. 

And that’s how I’m trying to live my life. To wake up each day and see what’s possible. The last few weeks, the answer was “not much”. I was in a downward cascade that started with vertigo six weeks ago. The vertigo spell seemed to unwind months of forward progress. Suddenly, my energy was low, my appetite was absent, and my digestion was terrible – I was back to pureed food for a while. Then emotional fragility set in.

It was a dark time. I was feeling incredibly low. I try to take set backs in stride. To accept them as part of the process. That’s an easy concept to grasp intellectually, but much harder to put into practice. Especially when you feel miserable.

There’s a great line from a song: “When you’re going through Hell, keep on going”. What other choice is there, really?  So, these past few weeks I did what I did on that hike. I kept putting one foot in front of the other, no matter how slowly, no matter how hard it was.

And guess what? Yesterday I reached the proverbial top of the hike. I have mental clarity. My energy is good. I have my appetite back. My digestion is working better. 

Am I cured? Not even close. In fact, compared to a healthy person, I probably feel pretty crummy. But compared to where I’ve been, I feel great. Alive. Happy. I have a spring in my step, and lightness in my heart. This day is full of possibility for me.

This is the perfect illustration of living with chronic illness. Good days, bad days, horrid days, mediocre days, excellent days.

Here’s the rub. I stick to more or less the same regimen every day – same diet, same supplements, same meditation, same supportive therapies, same amount of sleep. Yet, there is no sameness to how I feel. This is what it means to live with Lyme Disease. Line up 100 other Lyme patients and you will hear the same story.

Since this is my reality, I’m attempting to make peace with the the varied nature of my days. In meditation you are taught that nothing is permanent. Things are always changing. Therefore, bad times don’t last, but neither do good ones. 

I think we’re all pretty good at embracing the transient nature of bad times. But it’s less intuitive to view good times in the same light. But that’s what I must do. Celebrate good days? Absolutely. Cling to them and expect them to last forever? Absolutely not. Be crushed when they leave me? No, no, no.

The same is true of bad days. Be crushed when they arrive? No. Think I’ll never again have a good day? Absolutely not.

How will I do that? I’m not the Dalai Lama, so I don’t really have a good answer. But I do know one truth. Regardless of how I feel any given day, the only answer for me is to keep on going. And I will. 

Six Years Ago Today I Ran a Half Marathon. Two Weeks Later, My Digestion Shut Down.

My transfer from the world of the healthy and fit to the land of the unwell was swift and unexpected. In the above photo, I was 40, and in the best shape of my life. I had muscle. I was a healthy weight. I ran, played tennis and did strength training. Sometimes all in the same day.

Just two weeks later I began the downward spiral that has landed me here. 46 and in the worst shape of my life. 46 and in the least health of my life. I’m not a healthy weight. My muscle is gone. I don’t work out. Can’t work out.

When I first got sick, I think the hardest thing to reconcile was the fact I had previously been so healthy. I vividly remember sitting on my porch, unable to eat, the weight sliding off me. That half marathon was just days prior, yet it felt like a lifetime. What happened?

Even today, the image of me running affects me profoundly. It’s the last significant act I did as a healthy person. Had I known that at the time, I might have paid more attention. Had I known, I might have enjoyed it more. Had I known, I would have taken my time before crossing the finish line. Maybe just one more lingering, deep inhale of health and vitality.

But I did cross. And in doing so, I crossed to a new reality.

In the weeks and months that followed, my health quickly declined, yet, my focus was on getting my life back to normal ASAP. I was driven and impatient. I needed to get this behind me, and fast.  A lot of sentences started with “when I get well…..”. Every day was about getting to the end game, and trying to put a timeline on it. Maybe I’ll be better next month? Or maybe in six months?

Somewhere in the past few years I gave up focusing on the end game, which is not the same as giving up. When you have been sick for six years, your perspective changes. Your goals change. I still have every belief I will get better one day, but I don’t think about the timeline. That’s out of my control.

Instead, I focus on what I can control, which is this very moment, and not much else. I try to stay overwhelmingly grounded in the present, even when it’s miserable. Each day I try to focus on what’s possible that day – sometimes a lot is possible, some days not much.

Every day, I fight for my health, and do every single thing my doctors tell me to. Every thing. Even when I don’t feel like it or don’t want to or it’s not convenient. In doing so, I know I am giving myself the best possible chance to regain my health. And that’s all I can do.

I’m responsible for the effort. I’m responsible for trying my hardest. But the outcome is out of my hands. That knowledge is so freeing. It feels so good to let go of something I have no control over. Either my efforts will add up to something, or they won’t. But that’s unknowable to me today.

Six years into my journey, where am I?

• I’ve made progress, but I am not cured.
• I can’t eat or digest normally, but I’m better than 6 years ago.
• I’m not on a feeding tube (which was a very real possibility).
• I’m more wise. 
• I have more compassion for anybody who struggles in any way.
• I know more about myself than I ever would have if I had stayed healthy.
• I’ve received the gift of tremendous compassion from those trying to help me.
• My marriage is surviving the “in sickness and in health” vow with flying colors. This speaks volumes about my husband.
• I’ve grown closer to God and have experienced the kind of comfort that can only come from deep faith.
• I’m acutely aware of the opportunity I have to use my experience to give back to the world.

And that’s where I want to leave this post. My whole experience is adding up to something that’s going to help somebody else in some way. I just know it. This journey, however long it’s going to last, is not in vain. I’m being prepared for something. I am gathering experiences and wisdom that are going to lead to some collective good. I just don’t know what yet. And I don’t have the required strength yet.

So maybe I lied when I said I have given up focusing on the end game. Maybe I just changed it. The end game isn’t getting well. The end game is getting every drop of wisdom I can out of this experience.

I’m going to need it later.

I’m Coming Back. Slowly.

I would like to say I handled my vertigo situation with ease and grace, but, unfortunately, I can’t. It was hard and frustrating and broke my spirit in a way.

I can handle my usual struggles, and I think I could have handled vertigo in a vacuum. But vertigo plus my usual struggles was just too much.

On top of that, I had been feeling relatively well in the month leading up to the vertigo, thanks to a new treatment plan I started in April. But then the vertigo hit and I felt crummy from that. Then my digestive tract started to back track on the progress I had made, hitting me on both a physical and emotional level. It was a downward spiral.

My head was dizzy, my stomach was in constant pain, my food was not digesting, my energy was low, and I got really fed up.

I think the hardest part was the feeling of going backwards after having a month or two of forward progress. This is how it’s been. I work so hard to move forward, and then get knocked off track by something from left field. This has happened over and over and over. One step forward, two steps back has been the story of my life the last six years. Usually, I can take the long view and just roll with it, but not this time. 

The interesting thing about this journey is every time I think I am at my lowest point, two things happen. First, I am reminded of something our Pastor often says. He takes pains to help us understand God always shows up, especially when we are in our darkest corners. In those moments, He is there guiding us, protecting us and being with us. When I am in the dark, I think of God’s abiding presence, and somehow I am comforted. I know whatever is happing is part of a master plan and it’s not my job to know the plan. It’s simply my job to live it every day. Without question, regret or remorse. 

Something else usually happens at my low points. Just when I think I can’t stand the current suffering for another second, just when I want to pull out my hair, just when I want to throw a shoe through a window, or better yet, throw in the towel, something changes for the better. It’s often just the smallest improvement that might not even be noticeable to anybody else, but is enough to restore my hope and optimism. This has happened more times than I can recount.

So where am I now? I’ve been four days without vertigo. I have no idea if it’s gone forever, but it’s gone for today. I’ve had about two days of ever-so-slight improvement of my digestive issues. I don’t feel as well as I did pre-vertigo, but I believe I’m headed in that direction. I just need to keep my head down, keep doing what I’m doing and believe in myself, my doctors and my treatment plan.

The above photo is from a boat trip last week. I was still having some minor vertigo issues and was not sure if boating was a smart idea. But I decided to go for it. There was a period of not feeling well, but I rallied and had a wonderful time. I laughed. It was a moral victory over vertigo, and gave me confidence that I will work my way out of this temporary detour. 

I’ve faced many detours on this road to healing and always find my way back. This time will be no different.