Friday, May 1, 2015

An Open Letter to Those Who Feel Left Behind

(Hey, fellow digressors -- I'm alive! I bet you were starting to wonder, huh? I've actually had this post mostly written for a while, but I'm only posting it now. Sorry about that. Just so you know, I do intend to address the short story situation, as well. And I'm sorry if the formatting is off; I'm using the Blogger app on my phone. That will probably drive me crazy until I can get to my laptop and fix it. Sorry, OCD/OCPD people; I never meant to cause you pain... *ahem* But I digress. 

[UPDATE: I fixed it! Yay! ...I shall let you read now.]) 

You're not sure when it started, exactly. Life was normal -- even if it wasn't always perfect, it was fairly predictable. Then something started to change. Maybe a friend moved to a different state or went off to college. Maybe a sibling went off and got married. Maybe you were diagnosed with a long-term illness. Whatever it was, when it came, you thought you would learn to deal with it. You and that friend would keep in touch often, the sibling would meet with you for lunch once a week, and all your friends assured you that your illness would not change anything between you. You exchanged e-mail addresses, agreed upon an ideal day of the week on which to meet, and started treatment for that illness, confident (or at least hopeful) that things would return to normal soon. 

But sometime between then and now, something has shifted. You no longer feel the security you once did. You don't hear as much from that friend or that sibling, or you find yourself incapable of fulfilling what most people consider to be basic tasks. Oh, sure, all around you life goes on. But somehow you just don't feel like you're part of it. You've begun to feel disconnected from your friend or sibling, or you feel stuck in a rut of lying in bed all day while everyone else works, goes to school, gets married, or just keeps chugging away at [insert ideal "normal activity" here]

And here you are, standing (or sitting, or lying) right where you were when it all started, stuck. Fading into the background. Left behind. 

This letter is for you. 




On August 28th, 2012, I rode with my mom to a doctor's appointment. In my lap, I held a notebook, and on my way to see the doctor, I scribbled all the symptoms I could think of that had plagued me for the past couple of years. I can remember a few of the items now: Fatigue. Brain fog. Memory problems. Arthritis. Muscle aches. Depression. Sensitivity to light. The list went on. Part of me thought it was ridiculous, that at least some of these symptoms had to be in my head. There were too many, and no-one had fully explained them. 

Well, I supposed, someone had. Upon describing some of my symptoms to a friend, they asked if we had investigated the possibility of Lyme Disease. Being a chronic Lymie herself, she was well-acquainted with the disease and even knew who we could visit to get it tested. By then, I had been through several tests, most of them involving blood work, one of them involving electrodes stuck to my chest for a day to measure my heartrate. Although this physician was fairly new to us, we figured that we might as well visit him and try to get some answers. And anyways, his blood tests only involved a prick of the finger rather than a needle stuck into the arm, and for me, the less invasive the needle, the better. (Needles. Blech. I can't even type the word without shuddering.) 

So we walked into the small practice where the doctor worked, and I held tight to the list of things that had plagued me over the recent months and years (more specifically, the past year and a half). We walked into his office and sat down, asked our questions, and I handed my lengthy list over to him. I remember that he told me the list was consistent with Lyme, but of course he would have to check my blood to make sure. I held out my hand, and he pricked my finger and smeared a drop of blood onto a glass slide. I had to look away, of course. I've never been good with blood. 

As you've probably figured out by now, it wasn't a normal test, where you take vials of blood and ship them off to a lab and test for a hundred different strands of disease. This was much simpler. You take the blood and put it under a dark field microscope, and then observe the cell activity and look for parasites. (And believe me, it is effective. It's just different, is all.) The doctor took a look, then switched on a small television set connected to the microscope, indicated all the telltale signs in the bloodstream, and confirmed our suspicions. 

I had Lyme Disease. And by his estimation (combined with our own accounts of when my symptoms had become noticeable), I'd had it for about a year and a half already without treatment. So not only did I have Lyme, but it was late-stage, chronic, and had gotten into my brain and nervous system, wreaking havoc there. 

Strangely, when I got the diagnosis, I did not panic. I did not cry. I did not even wonder much about how this might impact my life in the near future. I just thanked the doctor, went to the car with Mom, and while she stepped into a grocery store, I sat in the car and vented my thoughts and feelings into a document on my iPad as I came to terms with my new identity: 

"I have Lyme disease.
I have been diagnosed with Lyme disease.
I am a Lyme patient.
I am a Lyme sufferer.
I know what's wrong with me.
I know why I've been sick for the past two years.
I know why I've had to quit karate.
I know why my peanut allergy has become life-threatening.
I know why dairy makes my stomach upset, and gluten makes my head heavy.
I know why I'm depressed.
I know why my liver is on the verge of collapse.
It's not my fault.
I have Lyme disease.
I know why a debilitating fatigue sometimes sweeps over me, making it impossible to work.
I know why I'm always sick.
I know the name of my disease, the name of my tormentor.
I have answers.
I have closure.
I have peace.
I have Lyme disease."

In my eyes, at that moment, everything was a little brighter. Sure, I was sick, but we would soon make the illness go away, and I could return to life as normal. I would keep going to church and drama ministry group, and soon I would be able to help around the house again without ending up on the couch. People would look at me no differently from before, and within a few months, I would be normal again. 

Two and a half years later, still Lyme-ridden and depressed, anxious, foggy, etc., I've begun to feel stuck. I'll admit it. Yes, when I really think about it, I can point to ways that my illness has blessed me even as I've suffered from it. It's mellowed me, made me care more, and forced me to slow down and take things one day at a time. It's given me no option but to trust God with all that I have and am, and it's taught me to reach out to others and not wallow in my own problems (though I can't say I always succeed in this). 

But I am not perfect. I am human. I have a mind that likes to twist everything and make me feel all the things that are least helpful to my recovery or to my ability to serve God. I have a body that gives out on me randomly and nerves that wreak havoc with my ability to function in public or even sometimes at home. I smile to the world, while inside I'm just hoping and praying that soon I will find relief. I walk into stores, and people stare at my cane, then look away when they realize I've seen them. I throw myself into helping with a project, then try to avoid people's frustrated gazes when five minutes later I have to retreat to my room to collapse. I tell others to hold on and find hope in God, while inwardly I'm screaming and pleading with God to give me even a glimmer of that hope which I pray I've been able to pass on to others. 

Oftentimes, I feel alone. I feel scared and tired and hopeless. Sometimes I stare at my bottles of supplements and just think, "Why am I still taking these? I've been taking them for years, and I'm still sick. It's still costing my family money. What's the point?" 

And when my mind takes that turn, it also likes to dwell upon all the things I haven't done. I wanted to go to college. I'm too sick to go and probably wouldn't have the necessary concentration, either, even if my treatments hadn't made finances complicated. I pictured myself as a stay-at-home mom. I guess at this point I'm open to marriage, but since I'm almost never out in public, I've sort of accepted that men are unlikely to notice me (not that this is an entirely bad thing; being single leaves a lot of opportunities open), and I'm not sure I'd be able-bodied enough to keep up with the responsibilities involved in having my own household, much less in having and caring for kids. I want to get a job and be able to contribute to the family finances so I don't feel like a freeloader. Well, I do have a job, but it's not all that lucrative, and since it's basically freelance work, it's not all that regular of a paycheck, either. 

And then I look around me at all the people who are moving on with their lives and doing all these great things for God and others, and I feel left out. I feel invisible. 

I feel very left behind. 

Maybe you've been there. Maybe you still are there, and it hurts. You wish you didn't feel this way. You see others in situations worse than yours and feel like a whiner if you so much as open your mouth about your own problems. Part of you knows and understands that not everyone does life at the same pace and that it's fine for others to move on with their lives while yours is apparently in intermission. 

But then there's another part of you that wants to run after everyone and yell, "Stop! Wait for me! I don't want to be left out anymore!" 

I guess what Theodore Roosevelt said is true: "Comparison is the thief of joy." 

I know it's hard not to compare our lives to others' when we feel stuck and miserable, but it really gets us nowhere. For me, it just makes my depression worse and makes me want to try less. 

But for me, at least, at the heart of all this comparison is not necessarily jealousy or anger, though those do play their roles. For me, it's more that I feel like everyone else is doing what they're supposed to be doing, and I am somehow inadequate. I should be moving on and pushing through all my difficulties. Yes, I try to serve God where I am in the ways I can manage, but some part of me feels like that doesn't matter when I can't keep up with the everyday stuff that everyone else is doing. 

Okay. Let's stop right there. Enough of my pity party. What does the Bible have to say about this? 

"For all things are for your sakes, that the abundant grace might through the thanksgiving of many redound to the glory of God. 

For which cause we faint not; but though our outer man perish, yet the inward man is renewed day by day. 

For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; 

While we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal." 

- 2 Corinthians 4:15-18 

Sometimes life is hard. Crazily hard. Unbearably so. Sometimes people get busy, health declines, and things start to look bleak. Sometimes you find yourself standing on the tracks, staring after the train of life as it pulls out of the station, and wonder why you didn't catch it in time. But God will make a way. Even if that way means trudging through the wilderness with sweat pouring from your brow, and even if no-one else you know takes exactly the same route or shares in your struggles, God will be there to help you keep moving at the proper pace (not the one everyone else is keeping), and He will give you rest when you finally reach the destination He has ordained for you. Maybe you can't see it now, but remember: Things are always harder to see clearly from a distance. When you get there, it will all become clear, and the struggle will be worth it. 

Recently I discussed marriage and parenthood with my mom, and expressed to her how unnerved I was by the idea of enduring childbirth. I mean, yeah, if I do get married, kids would be nice, but there has to be a reason why mothers scream and cry and curse the day they met their husbands as they bring their children into the world. She told me (not word-for-word, because I have a terrible memory), "When the labor is over, and they lay this cute little baby in your arms, and you realize that it came from you and your husband, the pain is left behind, and you wouldn't trade a moment of it for the world." 

So next time life gets hard and you feel left behind, just hang on and keep pressing forward. Don't worry about the pace; you'll get there eventually. You may not like where you are right now, but with God's help, you will reach your destination, and never again will you be left behind.