Building a Strong Support System with Chronic Illness when you Move Away from your Hometown 

Once upon a time, there was a little girl who really loved her home. Even when she was vacationing at some of her favorite spots on Earth, she still wanted to always go back to her “yellow house.” 

College was a rough transition for the girl. Theoretically, she always wanted to leave home and spread her wings, and she didn’t like any of the colleges close to home, so she selected a small, liberal arts school two and a half hours away. But until a few months in, she was miserably homesick, and even very seriously considered transferring out and attending community college for a couple years. 

But the girl ended up staying in college and making lifelong friends: and one friend in particular, who, the very beginning of her second year of college, she began dating. The thing about this boy is, despite going to school in her home state, the girl ended up falling in love with one of the few out-of-state students at her tiny liberal arts college. 

As may be super-obvious from that story, I am that girl, and I’ve lived in Ohio, about five hours from my hometown, for 4.5 years now, ever since I was married and we moved down here for grad school. We live 4.5 hours on a trafficless day from my family, and three hours from my husband’s. 

In 2017, it’s hardly uncommon for young adults to move away from home to pursue new opportunities, though it’s rarer in the midwest, where I live: many of my co-workers and others I meet grew up in this area of Ohio, and I’m one of the only “outsiders.” That means that while other coworkers talk about their families being close by and having families to help with things like childcare, I’m one of the only ones whose family is hours away. 

I’m not going to sugarcoat it: When you’re chronically ill, especially a young, chronically ill parent, living far away from family and established, longtime friends is often excruciatingly hard. When we originally moved here for graduate school, we weren’t sure where we were going to end up, and, to be honest, we are never fully sure about that. Life is a moving target, and we right now intend to go where life takes us, one step at a time. 

What we do know right now is that moving doesn’t make sense. We have unexpectedly grown roots in this area. We both are in jobs we are excelling in, I have found a supportive church family, and my daughter is thriving at her school. Plus, my medical network is here, important until I get the “Will I or won’t I have surgery question figured out.”

So, as long as I’m chronically ill and find myself in a place where I’m far from my hometown support system, it is crucial for me to build a support system in unconventional ways. This is something I have done overtime: some intentionally, some accidentally, but it has been something that has really helped me thrive and be well in a place that isn’t particularly close to my parents or in-laws. 

My first line of support is my little family, which is my husband and daughter. I have made my home with them, and we are making a new life, new roots, and a new story together. Additionally, those roots extend long distances, thanks to the wonders of modern technology. 

I am so eternally thankful to have the husband I do to walk this path of chronic illness with me.  My husband is my rock through the storms that chronic illness throws at us, and has taken the “in sickness” parts of our marriage vows incredibly seriously since the very beginning of our relationship, even whilst knowing “in health” would likely never be a reality with me and my chronic illness. We got married young, at 21 and 22, and heard that our young marriage would hold lots of challenges, and of course, a chronically ill marriage holds its own challenges. I know my illness affects him in its own ways: illness affects both the ill spouse and their partner. But we are able to talk about it, and he always continues to support me and be there for me, even when I have no clue what I need (which is frequent). We’ve been together over 7 years now and married for 4.5. Life has thrown a lot at us, but our partnership is strong. 

My daughter is three and a half, and she is able to say that her mommy has Ehlers Danlos Syndrome  (even if she can’t fully pronounce it). My daughter is an incredible part of my support system, because she keeps me joyful, and she keeps me grounded. My role as her mother is always more important to her than my role as a sick person. She knows I’m sick, but that matters less to her than the fact that I’m her mom, and there’s so much power in that to me. When I dedicate special time to spend with her, I’m able to forget I’m sick for a while, because I can focus on her. Don’t get me wrong: I still have limitations. We spend a lot of time cuddled in bed together (I will write a post on chronically ill parenting of a preschooler in the near future). But for the most part, we’ve found a groove. She’s not perfect: she’s three and a half, and she has her tantrumy moments where I certainly don’t forget that. But she’s also a sweet, empathetic kiddo a lot of the time. 

After my husband and daughter, the next most important thing that is absolutely crucial to my unconventional support system is social media, specifically Facebook and Messenger. People–especially non-chronically-ill people in certain circles–tend to really bash what they see as the “overuse” of technology. Facebook especially tends to get a bad rap. Every other week it seems like I hear someone talking about deleting their Facebook. 

On one hand, I 100% believe that you have to do what you have to do for your own mental health and wellbeing. That being said, Facebook is a tool, and like any tool, it has positive and negative applications. 

I use Facebook to keep others in the loop about my illnesses. Honesty is incredibly important to me. I give updates on my appointments, prayer requests about upcoming dates that are significant due to my condition, and share my blog and The Mighty posts. I don’t post about my illnesses exclusively: they don’t define my life, and I also share other stuff (mostly pictures of my daughter). I have been amazed by the outpouring of support I have gotten through Facebook, often through people I wouldn’t expect. I have a great community of people who stand in the gap for me and help hold hope for me when I can’t. It also helps inform the people I see regularly, so that when I see them at, say, church, they know what was going on in my week, and know what to ask about. A lot of times a church member or coworker will tell me they saw a Facebook or blog post and are praying for me and supporting me, which is really great. 

I also use Facebook messenger as a primary mode of communication with many out of town friends and family. It has helped me stay close with many friends that live in other states or even other countries. I love Facebook Messenger because I can write back at my own pace, and so can they. I can use it to carry on a conversation immediately, but I don’t have to. With some friends and family, we write long letters back and forth, with days in between; others, short sentences, carried on in immediate conversations. Even though many miles exist between us, Messenger helps bridge the gap and reminds me that I have so many friends that care about me: and helps me care about them and be a good reciprocal friend too. 

Messenger has also helped turn acquaintances into friends. There are several wonderful, strong women on Facebook that I was friendly with in person at several stages in my life (a few in high school, a few at college age) but I was never particularly close with. They read my blog and statuses, and messaged and commented that they were going through their own chronic or mental illness journeys. They have been wonderful sources of mutual support, and my only regret is that I did not become friends with them sooner. 

And then there are my online friends and support groups. I am blessed to have several wonderfup support groups full of online friends: some specifically geared towards chronic illness, some not. These people have become dear friends over the months and years, and an exceptional source of mutuality and support. They may live far apart and I may only know them through my computer, but they are nevertheless essential to my support system. Since many of them are chronically ill as well, many with the same illnesses as me, they understand my struggles in a different way, and therefore can help me in a different way. 

I’m not perfect in a lot of ways, of course. Sometimes, relying on technology means I mess up, and drop off with people who really care about me, like my mom and little sister. I know she is so much better at checking on me than I am on her, and I know I can be accidentally hurtful when I leave her out from my life. She is so caring and reads all of my blog posts, and always follows my health, but I don’t always do my best at updating her personally. 

Technology makes me lazy sometimes. It means I do group updates instead of talking to people individually. Again, technology is a tool. I want to tell as many people as possible, but I end up leaving those closest to me out of the loop. So to those I do make feel worthless: I am so, so sorry. 

My family is of infinite worth to me. My sister is my best friend. We fought like cats and dogs growing up, but I miss her every day now that she lives far away. She cares about me so much, and she makes such an effort to help me out. Technology helps us talk, but I know I underutilize it. Ahain, a lot of it is laziness, and me not being intentional. I need to fill my mom and my sister in first, and that’s something I need to start making a habit of. I think that’s something all chronically ill people can learn from: know who your close circle is, especially if they live far apart from you, and fill them in first, before updating everyone else. They shouldn’t have to hear your updates through the technological grapevine. 

So the next time you see someone on their phone, especially a chronically ill person, chances are, they are not being rude. It is a source of support, love, and guidance to many of us. It is an anchor to me: it is how I get support from my mom and my dad and my little sister and my in laws and the rest of my familh, from God through my Bible app. It does so much more than just aimless scrolling. 

I am also thankful for out of town relatives and their willingness to be flexible and go the distance for us, even when it’s hard. My parents and in laws frequently step up to the plate, and have watched my daughter for weekends and vacations and other extended periods of time to give us a break. The ways they have helped us have bridged the distance considerably, and we couldn’t make any of this work without them. 

Other people locally have made this new community feel like home, and stepped in in emergencies. In situations that have felt dire, the most wonderful local people have stepped in and provided practical help, childcare, and love, making a place that was initially strange and large feel a lot more like home. I don’t talk to all the parts of my support system all of the time, but it doesn’t make me any less grateful. 

Outside of my phone, my two major local support networks are work and my church. I wrote a post earlier this year in church shopping when chronically ill, and I plan to write a follow-up post soon about how finding the right church was a hugely important part of my chronic illness support system. 

Finding the right church helps in a multitude of ways. For one, while my online support system is vast and extremely helpful, living in one’s phone can be very isolating. For me, it’s very important to get out of the house and have in-persom networks: it helps me feel much less alone, much less isolated, and even less sick. 

Since I don’t have family in town to visit, a church helps meet this longing for close social networks. The church I’ve found has an array of social offerings that were easy to get plugged into. I quickly found a great Sunday school class, Sunday worship, and midweek classes for my daughter and I. One of the best parts for a chronically ill person that I’ve found is my church is extremely nonjudgemental when i miss a week or several weeks in a row, or if I need to sit in my car while my daughter attends her Wednesday night class instead of going to my Bible study because I’m feeling too fatigued and ill after work.

 They’ve also been accepting and non-judgemental when I need to sit during the standing parts of the church services. I have found an environment where I am able to be open about my illnesses, and have found myself surrounded by a community that prays for me and supports me along each step of my chronic illness journey. I definitely would feel a lot more alone without my church family. 

Finding a fulfilling job that worked with my chronic illness and also allowed me time to write, rest, recover, and self-care has been absolutely critical. I kind of fell into this job by accident, because the shift–a split shift, with a shift early in the morning, a break in the middle, then going back in–worked with having another job. I quickly decided not to have another job, my illness being a big factor in thst, and to completely switch fields over to education and childcare, and it’s been such a worthwhile switch. 

Being in the right career helps me get out of bed each morning, even when I’m not feeling well. Seeing “my” 50+ kids I work with never fails to put a smile on my face. My work feels meaningful to me, which helps distract from pain and other symptoms. While I’m at work, I often forget I’m ill, which is huge. 

Moving back home is never fully out of the question, nor is potentially moving closer to my in-laws, or somewhere in between my parents and in-laws. But until then, I am thankful that I have other ways to stay in touch with the many people that support me, love me, and make my life full. God did not intend for me to go about this chronic illness journey alone, and luckily I have wonderful people in my life, both near and far, so that I never have to. 

Holding Out Hope when the Chronic Illness Journey is Long 

One of my favorite metaphors for life, however cliche, is of life as a journey. Having a chronic illness, especially young, is its own journey, and sometimes the legs of the journey can be longer than expected. 

Yesterday, I had one of those times. I had a first appointment with a neurosurgeon two and a half hours away from where I live to meet about my Chiari Malformation. I had built up this appointment in my mind as the End of the Road, but it ended up being an overly quick appointment. The surgeon seemed  very competent, kind, and well versed in Chiari, which was great, but he wanted to be cautious and order more specialized tests before scheduling surgery. Since I had gone in expecting a surgery date set, this was initially a huge disappointment, even though logically I know I need the testing and this doctor is exactly the kind of doctor I want: the kind that is willing to be cautious and order the right testing before jumping into a procedure.

I know firsthand how sometimes my desperation for answers and timelines and treatments on my chronic ilness journey leads me to cling to things that are not best for my overall health journey. In July 2016, for instance, I thought I had finally reached the end of an arduous diagnosis journey, and I was diagnosed with fibromyalgia. But it turned out to be a misdiagnosis. After dealing with that, and treatments that ended up being counterproductive to the Ehlers Danlos Syndrome I really had, I am slowly learning to embrace the journey and the fact that, since these are lifelong, incurable illnesses, this can’t be anything I can rush. It needs to be the right steps on the journey, and I need to be patient so that the journey can take those right paths. 

As validating and comforting as answers and timelines are, the rational part of my brain reminds me that I don’t want answers, or timelines, if they’re the wrong ones. 

One of my favorite stories on The Mighty is written by fantastic contributor Nikki Albert. It was written just over a year ago, and I believe I read it when it was first published, when I still thought I had fibromyalgia, the topic of the story. In the article, titled “Why Those of Us with Fibromyalgia Should Embrace Being Turtles,” Albert writes about the importance of a slow-paced, turtle-like lifestyle for those with fibromyalgia: which certainly applies to those of us with similar chronic illnesses as well. 

Albert discusses how the world can often seem intensely fast-paced, a chaotic rat race, but that those of us with chronic illness can and should, for our own health and wellness, choose a new way to live. This “way of the turtle ” is slower paced, filled with self-care and not comparing oneself to healthy people. She also talks about the #1 lesson I learned in 2016: not basing your worth on what you do, but rather who you are. And since I practice a Christian worldview, for me this means basing my worth in who I am as a child of God, not on any earthly accomplishments. 

Not only should I embrace being a turtle and pacing myself with everyday activities, I also have to remember that the pace of chronic illness treatment–the pace and length of this chronic illness journey I’m on–is going to be different. 

I have sometimes wished through the years, on the hardest days of my chronic illness journey, that I had something “more serious”: that is to say, something that sent my medical teams into what I see as more action. I haven’t thought this because i think those illnesses that are treated like emergencies are easier: on the contrary, I am sure they are extremely difficult and full of challenges I can’t imagine from this vantage point of having never experienced them.

 All it means is that on those hard days, I sometimes long, if I have to be sick, for an illness to which there was a clear treatment plan, and treatment was done expediently, rather than at the turtle’s pace life with Chiari Malformation and Ehlers Danlos Syndrome Hypermobility Type often feels like.

But some of the best advice I’ve gotten this year is that “nothing good can come from dwelling in ‘what ifs.'” I do not live in some hypothetical alternate universe, and never will: I live here, in this world, in this body, and this is the hand I’ve been dealt.

So, my advice to my fellow “turtles” on a long, winding chronic illness journey, that seems to be just getting longer day by day, is this–which is also my advice to myself: for a long journey, pack hope. 

Hope, as I’m choosing to use the word, means living with the faith, expectation and trust that things will continue to progress and continue to get better, even when they seem very hard. Since I am a Christian, my hope comes from believing there is an author of my story–God–who is much bigger than me. 

After my initially-disappointing appointment this week, I am choosing to pack this new outlook for the journey. So what are some practical ways I am choosing to pursue hope? 

In a recent post, I wrote about my scripture habit that helps me as very intentional self-care. I use the YouVersion Bible App and have read through many, many of its devotional plans. One of the most helpful features of this app is you can search for plans using a keyword. So when I was specifically searching for plans based on the life of Joseph, as I talked about in my last post. So right now, I am reading through as many plans about hope as I possibly can. I cling to all the scriptures and promises I can about hope. I also am reading reassuring quotes about hope, and these all serve as lights for my journey.

Another helpful way of keeping hope, for me, is looking over the topography  (using the journey metaphor) of my illness journey so far and seeing how far I’ve already come. A popular phrase I hear a lot in parenting is “the days are long, but the years are short.” This is true in my chronic illness journey as well. Certain days seem unbearably long, but the amount I’ve journeyed in just a year and how much more I know now is impressive. And that gives me hope that a year from now, I’ll be looking back on this leg of the journey and have a brand new perspective. 

A third way I am choosing to pack hope for my journey is by not traveling alone. My next post for my blog will likely be about building an intentional support system with chronic  illness when you have moved away from your hometown. I need to be intentional in sharing my journey, which is why I am very public about my health struggles, and talking honestly about it with friends and family. Isolation leads to hopelessness. My support system carries hope for me and helps me carry this hope for myself. 

Finally, my fourth tip I’ve discovered in the few days I’ve been choosing to intentionally embrace having hope along the journey is to smell the flowers along the way. I am learning to enjoy the little things in life more, instead of obsessing over things like what’s to come next on my treatment journey. Living in and relishing the beauty of the day to day helps give me hope, too  (more practical posts on how I do this are in the works!). 

Notice that never once in this post did I say a chronic illness journey is easy, nor is it something I believe you have to be Pollyanna happy about. I can’t always choose where I’m called to journey with my chronic illness, but I can choose what to pack. And starting now, I’m packing hope.

 Avoiding the Comparison Trap As a Chronically Ill 20-Something 

Wedding selfie!

This weekend, my husband and I went to a wedding near his hometown for two of his high school friends. Some of his friends are people I haven’t seen since our own wedding four and a half years ago. 

My husband’s friends are a group of generally very hard-working, successful people, and I love them all a whole bunch. They are a lot of engineers, pharmacists, and scientists, and already doing very well for themselves in their early to mid 20s. 

At gatherings of people that know each other well but haven’t seen each other in quite a while, the same questions are bound to come up over and over. “How are you? What doing now? Where are you living? Where are you working?” And you, in turn, ask similar questions back. If you know them and are already connected on social media, as I am with most of the friends I saw at the wedding, you may have some familiarity with some areas of their life, so the questions may become more targeted.

 I answer a lot of questions about my 3 and a half year old daughter, because I am one of the only parents in our friend group. I am always more than  happy to talk about her. I also end up talking some about my health, because of course I am open about my struggles with chronic illness and my upcoming appointments and potential surgery. I do my best to be honest about that as well, as honesty and candidness are big things I pride myself on as an advocate for chronic illness: though it’s never nearly as fun as the little one’s antics. 

Sometimes, during these exchanges, I can’t help my mind from spinning and starting the comparisons. “They’re so much more successful than you,” my anxiety will try to say, trying to spin me into that negative thought trap and out of having a good time. “If only you were healthy and actually working full-time year round. Think about how much more you could accomplish.”

One’s 20s is a fragile time in life to fall into the comparison trap, no matter what their health is. But when you add chronic illness, it can feel like the playing field is more uneven: and make you feel like even more of a failure, if you let it. 

And comparison traps aren’t only present with chronically ill people being tempted to compare themselves to healthy people (or people they think are healthy: we never truly know everyone’s personal inner struggles). 

And it happens both ways. Chronically ill people can see someone who has an illness and doing awesome things with their life–advocating for the cause, working their dream job, heck, even just wearing jeans every day, and another chronically ill person wonders why they can’t do the same things. Sometimes, this unfortunately turns into jealousy and attacking other chronically ill people seen as “more successful” or even “faking it.”

 Often, I see this taking the form of internet commenters complaining about a celebrity or even just a normal writer who is able to hold down a full time job despite their illness. “Wouldn’t it be nice to work. I can’t even get out of bed thanks to my xyz illness.” At its most toxic, this turns into infighting in the chronic illness community, a chronically il dog chasing its own tail or, even worse, accusing others of “not being sick enough” to “truly” be chronically ill. 

And on the other side of this, those of us who are still working can feel like we aren’t ill enough, like we live every day as fakers, despite our daily pain and diagnosises, and that people are just waiting around every corner, waiting to call us out as the “not sick enough” frauds we are. Not sick enough to be chronically ill, not healthy enough to be successful; the comparison trap does its best to make you feel like a failure in whatever realm you dwell in. 

Something I try hard to remind myself, and that I am lucky to have wonderful people in my life reminding me, is that there is no place for the comparison trap: it’s worthless to compare one’s own journey to someone else’s. 

Everyone’s journey is different: and everyone’s journey is important. When we are chronically ill, our journeys might look slow, and our steps might seem small: but every day I remind myself that life is not a race. Progress is still progress. Just because I had to set aside some of my dreams, like self-publishing a novel, so I can focus on getting brain surgery doesn’t mean they aren’t going to happen. Just because my career doesn’t look like the trajectory I saw myself going on when I entered graduate school doesn’t mean it’s not a worthy, necessary job that touches lives of children every day and makes a difference in the world, while at the same time allowing me to be part time during the school year and focus on my health right now. 

I wrote a post a little while back about how my scripture reading habit has become essential to my self-care. In my daily scripture reading practice, I often go through seasons where I gravitate to certain characters or scriptures that help me in my current season, and end up reading every single different perspective I can on them.  

Right now, the Biblical character I’m really resonating with is Joseph–the one with the multicolored coat, not the husband of Mary. Joseph had big dreams: and big struggles. He went from being the favored son of his father to being thrown into a pit by his brothers, sold into slavery, thrown in jail: and eventually made a remarkable recovery to be the second in command in all of Egypt, saving his entire family in the process. 

But Joseph’s journey didn’t happen overnight. It took approximately 22 years for him to go from pit to his brothers bowing before him in the palace! 22 years of suffering is a long time…and while I don’t relate to the exact kinds of suffering Joseph went through, and can’t imagine the horrors, what I can relate to is holding suffering around in my body for years and years, clinging to hope, wondering if it’s still ok to dream when I feel like my body might give out on me at any minute. 

One of the best bible study plans I’ve tread about Joseph is The Joseph Challenge by Dr. Kanayo Dike-Oduah, available for free on the YouVersion Bible app. On the last day of the plan, Dr. Kanayo writes, “remember that your life is important. You are necessary. Your God-dream, God-vision, God-idea and purpose is what someone else needs.” We weren’t designed to be all the same. Chronic illness sucks, and I’m not one to say “everything happens for a reason,” because some things are just awful, pure and simple. Bit what I do believe is that God can take everything, even the crappiest things, and use them for God’s own glory. And I believe God gives dreams to everyone: healthy and ill and in between. 

The thing about dreams is that they take time, and everyone’s dream operates on a different timeline. Struggles don’t mean dreams won’t come true: in fact, if you look at most success stories, there is a great deal of struggle and pain in all of them. 

The only person I want to compare myself to is…myself. Am I at a different place, a better place, holistically, than I was a year ago? I can answer that question with a resounding yes. Sure, my symptoms are getting worse: but my symptoms do not define me. 

So much more has changed for the better. I made my resolution word for 2017 wellness, and we near the end of 2017, I am generally so much more well. I have better self-care practices and better self-esteem. I love my new job and new church. I spend more time with my daughter and husband. We are working towards medical answers and treatment, and I have accepted that my diagnosises are a part of me but don’t define me. I’m writing more and have a solid bible reading habit. I’ve cut out negative habits. All in all, that progress, progress that I am sure will continue, despite inevitable bumps on the road, is the only comparison I need.

Living Life Whilst Waiting for Medical Answers 

This post has sat, a quarter-written, in my drafts folder, for over a week now. It’s not the first time a blog post has languished, but it may be the first time that avoiding a post has scared me away from writing entirely. You see, I am in a season of waiting. Waiting for answers, waiting for comfort, waiting for surgery. Waiting for God. It is not a season I like, and it is not a season I, to be totally blunt, particularly want to write about. 

If I could, I would just neatly push the delete button on this draft, let time and life happen, let this season pass by at its excruciatingly slow pace, let the answers finally come, this season finally pass, and never write this post, so that there would never have to be a record of this, my very least favorite type of season. 

But, if you’re anything like me, this is the kind of post you probably need most, because this is probably the kind of season in your life you probably live–and dread–the most. 

My life as a chronically ill person who is simultaneously a lot of other things  (educator, mother, wife, family member, friend, church and community member, etc) involves living in a lot of in-between areas.

 In a previous post about chronic pain, I talked about how, if we all have a stoplight of pain–red meaning total, disabling pain that means we stop everything do, and green meaning nearly no pain–I spend most of my days on yellow. I am at “slow down”: clearly aware of my pain, but, with medication and solid coping strategies, able to go to work, parent my child, and spend time with family and friends. However, that pesky pain of mine is always a constant companion and reminder. 

Just like my days are spent in the yellow, in between zone of pain, much of my life is spent in another in-between zone that is less-than-pleasant: a waiting zone. There is no fast forward button. Unlike on a TV show or in a novel, most of my life takes place in the uninteresting bits. 

It’s crazy for me to think about, because it consumes so much of my life now, but last year at this time I didn’t even know I had Chiari Malformation or Ehlers-Danlos Syndrome. Life has changed in so many different ways since I got my diagnosises, but one thing that hasn’t changed is then, just like now, was a period that was fraught with the tension of waiting for medical answers. 

Most people with chronic illness know that the diagnosis process can be frustratingly slow. It can take months or even years to find out what is wrong with you. And sometimes, you can get an answer, and later find out it is the wrong answer (like what happened with me and being misdiagnosed with fibromyalgia.) 

Getting the right diagnostic labels was such a relief to me, but what I didn’t expect was that there would be new seasons of the same kind of nervous, anxious waiting once I knew what illnesses I had. No longer is the question “why do I have these horrible, crushing headaches and neurological symptoms?” the first one on my mind, sure. I know they’re owed to my Chiari malformation. 

But answers aren’t treatment. I have been waiting for months to get in to finally see a specialist to find out whether or not I will need brain surgery for my Chiari. 

One of the other difficult things is that one’s own acceptance journey and their medical red tape journey never seem to travel at the same speed. Chances are I would already have had the brain surgery now if it wouldn’t have been for my own anxiety and waffling over it. 

But now that I’ve finally accepted that I do most likely need surgery and that the risks are worth the potential rewards, since my symptoms are so severe and continually escalating, I have to wait for my treatment schedule to be on the same page as I am emotionally. Sure, if I would have booked these appointments and done all of the legwork earlier, I could have had the surgery now, when I was emotionally ready, but I wasn’t in the place of acceptance before to take those steps to get the treatment. So it’s a challenge for sure. 

I started drafting this post on a Wednesday, the day after I was released from an emergency room trip that yielded absolutely no answers. Today is Saturday, over a week later. The biggest thing that has happened in that time is that last Friday I finally was able to schedule an appointment to see a neurosurgeon specialist for my Chiari, three hours away. 

If this was a TV show, we would only see the highlights, and this whole 2 week period, from emergency room visit to specialist’s office, would be one episode. But this is real life, and there is life to be lived in the in-between, in the tension of not having answers or proper treatments or timelines. There are questions to be answered honestly when parents at your education job ask you how you’re doing and you have no new news to give them. There are frustrated prayers to pray when you cry out to God, begging for a little peace among the pain as you try to wait the best and most faithfully you can. 

I am looking forward to Wednesday, and the appointment with my neurosurgeon, an appointment that has taken months to schedule, like it’s Christmas. But I am nervous about it too. What if it goes badly? What if they can’t help me? Or won’t? What if it makes all of this feel like I’m back at square 1 with treating my Chiari? 

In the meantime, the best I can do is push the “what ifs” aside, pray a lot, trust God has a plan for all of this, lean on my support system, and try to remember that there is life to be lived in the wait. Unlike on a  TV show, in real life the little moments matter. Each job shift where I get another opportunity to impact a life of a child. Each night I get to snuggle up with my daughter. Each time I get to go out on a date with my husband. These times are precious, and they deserve to be treated as such, not consumed by the worries of living in the in between. 

So I wait, and I muster as much peace as God can possibly give me for the wait. The wait may be hard, but there is life–beautiful, full, worthwhile life–still to be found in it if one looks hard enough.