Unrefined Hope

Hello to you lovely readers from our new home in the beautiful southern Oregon.

If you missed my husband’s guest post, let me catch you up in real time. In the last 8 weeks we gave feet to [and sped up the timeline for] our plan of leaving Southern California, researched destinations, chose a new city, packed up our belongings, said some very hard goodbyes and made the trek to move our lives to Oregon. All in the midst of illness and some heavy grief.

the struggle of disease

photo: Pixabay

We split the travel into two days, knowing my body couldn’t make it all in one without some dreadful aftermath. Tooka would like you to know that she enjoyed her view out the window and loved every rest stop she was allowed to explore/stake claim on. She slept most of the way and I wished with every ounce of my being I could sleep as well as dogs!

It’s hard to believe we have been here three weeks already. Moving when you are this sick – or married to someone this sick – is a huge feat and we had been hanging on for these weeks of rest. No more packing. No more moving prep discussions [or arguments].

Devoid of any concrete plans, we have enjoyed quiet days and short scenic drives together. We live in a valley, surrounded by beautiful foliage-covered hills and mountains, some we can see from our home. It is quiet here, calm. Quite the difference from nightly Disneyland fireworks and the train that shared our street back in Anaheim. Both of which would literally shake our walls. 😉

My parents visited us this past weekend from Northern California to help us dress a few of our walls, reassemble the sauna and put together some Ikea magic (flat boxes that transform into tables – you know the drill). It was nice to have the extra help and to feel like our new house is beginning to look more like our home.

As I’m writing this, I am struggling with this sense that there may be expectations others have upon clicking to read this post. Maybe to read that there’s some new great hope, excitement, or news that I’m about to share about my health or our situation. That moving to Oregon has already been this miracle shift for us and, whether or not I say so, one may assume things have improved significantly for us.

embracing authenticity in hardship

photo: Pixabay

Our reality is pretty close to our weather lately: most days it’s cloudy with scattered showers and a few breaks of sunshine in between. This past week was an exceptionally hard battle with my health in my fight for wellness. Symptoms and pain level were heavy and sleep was far from possible most nights. Trev has been wading through the adjustment and grief of leaving his home and so many important relationships from the place he called home for most his life. We are resting because we need it.

As a whole, our culture has some learning to do in walking through the hard stuff with others. We aren’t good at sitting in the moment, truly feeling the weight of the load of our neighbor. We like to speak fast and listen half-heartedly. We rush to point out the things we think are the “good parts,” the aspects of the trials we want the person facing hardship to focus on because otherwise it’s too uncomfortable.

While it may not have been intentional, I have at times been made to feel like my level of hope isn’t enough. It’s either insignificant or it’s “unseen.” In the level of openness I’ve embraced in sharing my story, I’ve been met with some great moments of compassion and understanding. I’ve also been critiqued and given a list of “to-dos” and shiny phrases that should boost my hope and positivity meter.

I recently shared a post on my Instagram that I’m going to share again here. It’s something that I feel resonates with where our hearts are sitting in regards to hope:

navigating hope in disease

“I’ve been thinking a lot about hope over the last few months. What it looks like for me. How other people view it. The expectation and pull other people have for me to always “cling tight” to it…and in the way they think it should manifest in my life, in what I share, and how I present my honest struggles with Lyme.

My understanding of hope goes something like this…hope isn’t always bright and lively, vibrant with color and clarity. I’ve seen hope flicker in the quiet moments. The moments when we are all alone and hanging on through one more moment, one more year of singleness, another day at an awful job, one more seizure, or another piercing migraine.

My hope often feels like the pebbles on the right. Kind of gray, rounded, messy. Perhaps not full of light and life in the traditional sense, but they ground me. The real, calloused, unrefined hope I embrace may not make sense to you, and you may not be able to see it if you’re looking for your own version of it. But it’s there, softly blazing in the corner of my heart.

So today I’d like to say this: It’s okay if your hope isn’t a bonfire ablaze. Others may want to impose their understanding of hope on you, but your hope is important and beautiful. You wouldn’t still be here if you weren’t hanging on to that hope uniquely yours.

Keep embracing those ounces of hope. Whether they’re gray pebbles or bright blades of fresh green. They’re valuable and significant.”

We know we aren’t the only ones facing a hardship that has rocked us to our core. Life can hit us like a ton of bricks, without warning. In the moments where we feel weighed down by the weight of a heavy burden, our hope can look much different than many people expect…but it’s here. Softly blazing. Flickering in the corner. Holding on.

The Oregon Trail

Today my favorite person OF. ALL. TIME. [aka: the hubs] is guest posting on the blog today, sharing the latest news from our little corner of the world. Trevin and I have been married for just over three and a half years and have walked through the lowest points of my health together as newlyweds. He is kind, compassionate, funny, loyal and generous…and he’s the best man I know.

– Kami

The Oregon Trail
by Trevin Lingren

If you’re between 25 and 40, there’s a decent chance you’ve heard of the game, The Oregon Trail. Or better yet, have played it. For a long time I wasn’t allowed video games at home. Eventually my parents caved and got me a Game Boy and I had Friday nights at the pizza parlor arcade as well. But for many years, it was the dry, barren Sahara.

One respite in the pre-Game Boy era was this amazing game during elementary school. In computer lab, if you finished your assignments early, you had a chance to play a game of adventure. Of risk and strategy. It was set in the late 1800’s in Wyoming and you had a family, a profession you chose, a wagon with oxen, and an absolutely enormous task of getting yourself and your family to Oregon. Apparently, the land of milk and honey was in Oregon.

You had to endure ALL kinds of obstacles to make it through the Oregon trail. Depending on your profession, you would start with a certain amount of money and possibly be able to utilize your profession’s skills along the way. The problems were many. You could get lost and waste valuable time and resources. Your children could get cholera or dysentery and die. Your wife could drown in 3 feet of water after caulking your wagon and trying to float it across a river (my wife didn’t have Lyme disease when I was in the game so I’m not sure how that kept happening in such shallow water.) Sometimes you had to set your family’s meal plan to “bare bones” just to survive with enough food from one town to the next. And God forbid you get assaulted by robbers. You might lose your son’s spare set of clothes, your wagon wheels, or all your food!

One of the few opportunities you had to regain some money and food was to go hunting. You had to be in the right area or you might end up wasting time and food to stay an extra day to hunt (apparently, nothing got done in an hour or two back then, and you seemed to always lose a day at a time). So, through all of this, you can imagine how few times my fictional family and I made it to Oregon. The obstacles were all too often insurmountable.

oregon-trail

Some of you, dear readers, have guessed where this is headed. My and Kami’s journey over the last 2 1/2 years bears so many parallels to the game it’s almost unbelievable. DISEASE. Getting lost through treatment. Trying to navigate work and providing. Ever-dwindling resources. Loneliness. Daunting, emotionally-trying circumstances more times than anyone would care to experience. 7 trips to the emergency room. SEVEN. Not knowing when, if ever, this journey is going to end and if we will get to our destination (health and consolation).

Before we got married, Kami, who is from a small town, told me of her intent to not live in Southern California her whole life (she moved back here for me). So we agreed that we would move to a place that was at least a little bit closer to her family, had more natural beauty, and a slower pace of life. When her disease took a dramatic turn for the worse, it seemed to delay our plans inevitably.

About once a month or so, we would discuss moving someday, mostly to reassure her that it would still happen. I’ve recently come to realize that she’s been hanging onto this hope for dear life, using it to propel her forward through the dark depths of this journey. That this promise was one of the few things that sustained her on the loneliest of days. It gave her optimism when she didn’t have any left in the tank. Folks, our emotional bank accounts have been overdrawn for quite some time and the debt collectors (our bodies and souls) have been pounding down the door, pleading for resolution, for quite some time.

After our 4th trip to the ER during just this year (including two times she thought she was going to die), we were so broken. I took a leave of absence from work to care for my wife and try to get my head, heart, and body right. We took a short vacation up the central coast of California that did us some good. I’m sure the natural beauty strengthened Kami’s wishes for another city even more.

For what seemed like months, we had casually discussed the idea of mold toxins getting in the way of Kami’s healing. For anyone, mold toxins are unhealthy and can wreak havoc on one’s health. But if you’re immuno-suppressed, you can really be put into a tailspin, including life-threatening circumstances. With some of her symptoms, and the knowledge of other Lyme patients’ experiences, we could no longer deny that we had to address this possibility. We recognized that if we moved, we could be moving to another environment that has mold. It could be stuck in the furniture, mattress, clothes, and other things we might bring along. Pretty overwhelming for sure.

A few weeks ago we began seriously discussing moving up our timeline to move out of the area.

We thought of desert areas for cleaner air and low humidity, thinking that could be helpful. But ultimately, we decided the pain Kami endures during the summer heat would offset the benefit of living in the desert.

Alas, dear readers, we come full circle to the name of this post. We have been praying about and planning on how to move to Oregon. We found a city that is big enough to offer jobs and a variety of culture, but small enough to not feel completely lost in the shuffle. It has considerably less precipitation than what Oregon is known for and that is highly acceptable to this Southern California native. Natural beauty abounds and it’s closer to Kami’s family. Traffic will be less and the cost of living is more affordable. It’s not perfect, but it checks as many boxes as possible on our priority list.

marriage-in-chronic-illness

This is a very difficult decision. We have to leave my parents (until they are ready to join us) and a lot of friends behind. Harder on me than Kami because I’ve lived 30 of my 34 years here and with moving to Medford (our selected city), we will know no one, save for a friend I’ve recently made online, via a local church.

I haven’t escaped this reality and it challenges me daily. If we hadn’t spent the last few months using much of our savings this would be much easier. If Kami were healthy enough to go out and meet new friends with me, that would be a significant boon. I don’t have a job lined up and neither Kami nor I feel safe leaving her alone for long periods of time. There are a lot of reasons to not make this move. But there are two, that I know of, that trump them all.

1. Vows:

Most of you that are married took a vow “through sickness and health.” I had no idea how quickly and thoroughly I would be tested in that area. Not much prepares you for it, especially with chronic illness. Most marriages today don’t make it. No one will be surprised to learn that the number jumps for those with a chronically-ill spouse. But we have been determined that our marriage would get stronger through this, not weaker and certainly not dissolve. We made a promise to each other, to Jesus, to our families, and to our friends that we would endure this scenario, even if we didn’t realize it specifically at the time.

2. For Kami’s soul:

Shortly before this past Thanksgiving, we began discussing moving very soon instead of “at some point” in the future. After a few conversations, I learned the most compelling reason to make this move. That Kami’s heart couldn’t endure another 6 months in an area so different from her long dreamed of home. A place that, again, provides emotional support, from natural beauty to less traffic to lower cost of living to physical support in the way of less air pollution. Not to mention how emotional support promotes the physical.

I don’t share all of this to toot my own horn. It’s a tough decision to share and be this raw and open with everyone. But both Kami and I have felt compelled to have something good come out of this journey and hopefully us sharing is part of God’s plan of redemption for this situation, so that others may be encouraged and challenged.

We have experienced God’s providence all along our journey, though often not in the way nor the timing we wanted. At times we had no idea how we would pay for something but the money would show up, often last minute, and quite unexpectedly. Recently, through the suggestion and advocacy of some close friends, we were blessed by our past church with a gift that covers some rent and medical bills.  This has definitely enabled us to make this move. We’ve also received some anonymous money in the mail as well. Truly humbling.

We don’t have everything figured out. Like how to fund new furniture (we can’t take the old because of mold exposure), moving costs, and living costs while we get set up and until we feel it’s safe for me to go back to work and leave Kami alone. But God’s provided before. He’ll do it again. And we’re grateful.

I hope this blog post has encouraged or challenged you in some way. So that you may be a blessing to others, as many have been to us, as enabled by Jesus. Thanks for reading.

Trevin

[If you would like to give toward our upcoming costs of moving, living expenses and the next stage of treatment you can send your gift via this PayPal link and insert the following email address: kami.lingren@gmail.com
Thank you for your support. <3]