an unbelievably high cost

My friends,

There is a truth that most Lymies would like to express, but rarely say because it is so intimate. It is a fundamental truth of our lives that if received poorly  would feel devastating. And frankly, it’s just plain awkward. But if our loved ones could know this and believe it, it would be incredibly securing.

The truth is that literally everything we do has a high cost attached. Literally everything we do is a fight. Never once are we care-free anymore. There is thought, intention, strategy (and often anxiety) over anything beyond reaching for a glass of water — and even that isn’t entirely off-limits.

What do I mean? There are all of these hidden, deep, frustrating moments for a Lymie. Normally, people don’t cry or crawl as they fight to go up two flights of stairs. They don’t get intimidated by the thought of walking to the mailbox. They don’t put off showering for five days because they just can’t stand for 10 minutes in a row. This is what a Lymie does. Lymies may only put one thing on their to-do list for the day, and feel it’s a victory if they accomplish it. Lymies know that getting outside of the house even twice a week is “winning at life”.

When it boils down to it, normal life things — like cooking dinner or writing an essay — are huge things… and leave you recovering for many hours or even days. And small things are still big things: Talking on the phone for 5 minutes. Processing information in a meeting. Cutting your meat at dinner. Choosing tomorrow’s clothes. Picking up a child. All of these things have a tangible and noticeable cost.

In the end, no action, no thought is “free”.  Lymies pay dearly out of their physical, mental, and emotional reserves, so every action has to be weighed. Every action has to be prioritized. And not every action that is in our hearts is able to be accomplished.

Let’s just be honest… This sounds dramatic. The sad and shocking truth is that it’s not. Most of the chronically ill people who I know are major power-houses… They are the people who ran organizations, had four kids, and still managed to find time to serve others. Now, when I see them laying in bed week after week, I have this sobering thought… They are (I am) operating at 5-10% of what they used to. That’s alarming. That’s devastating. It’s so hard to comprehend – both for the Lymie and their loved ones.

Chronically ill people tend to have a hard time being honest about what their lives really entail, especially when they have an “invisible disease” (a disease where you are very sick but look normal). Sometimes it’s simply that they want to focus on the good in their lives, because they know it would be easy to wallow. Sometimes it is fear of not being believed, because of judgments made by people in the past. And sometimes, it’s because their lives are simply not easily understood. When you’re living with such apparent loss, sharing details feels tender, vulnerable, and intimate… Other people’s responses can be craved and feared at the same time. 

OAT_Tightrope

I think that communicating difficult truths is like walking a tight rope. It’s difficult to know how to communicate in a way that is most helpful… That rare, beautiful footing which gives us freedom to be open and dignity to still be “Me” and not “Sick Me”. Each chronically ill person I know has had trouble with this. It’s just what happens, and it’s difficult to keep towing the line… Especially because each step forward restarts the balancing act.

Being honest to this degree has the ability to change how people think of us, and it feels risky.  We don’t want your perception of our identity to be “sick”. We don’t want to be uninvited from participating in life. But we do want you to know our world, so that we don’t shoulder it alone… so that we can feel known.

So, I want to say something directly to you, my dear Lymies, and I want to say something directly to your loved ones.

My dear Lymie friends:

Your life has a high cost attached, one that no one could ever fully understand. I am so sorry that even simple things are painful and long-lasting. I’m so sorry that it takes you two hours of great effort to get out the door for the day, and that you have nothing left of yourself when you get home. I know it’s discouraging. It is unbelievably tough to be constantly “on” — thinking about the ramifications of simply living life. And though it sounds cheesy, please hear me and believe me when I say that you’re amazing. Because life is costly for you. Any living… just breathing is a great feat. It requires strength just to get through the day.

And what is even more amazing is when you give your precious strength to anyone else. Baking a birthday cake, making a meal, dropping off your neighbor’s kids after school, calling a friend who had a rough day, holding a door for someone with full arms… It’s all amazing, because no one could ever know how much it costs you, and yet you do it anyway. There is this story in the Bible about a poor widow who gives her last two coins as an offering to the Lord. Meanwhile around her, all of these rich people are dumping in a lot… And Jesus says that she gave more, because the rich people gave out of their overflow but she gave out of her need.

When every action is precious, any offering of our time, our bodies, our hearts… is beautiful. It’s deeply beautiful to give out of what already feels lacking. My friends, you are very rich people by knowing the weight of what you offer. So, please, please do not be discouraged that your gift is small.

What you do is big. What you do is important. It’s enough. And when you literally have nothing, know that it is okay. You can only do what you can do. It’s heart-breaking to be so limited, but even if no one understands… You can rest in the integrity that you just don’t have it in you to perform an action. I hope you can rest in that.

And dear loves ones of Lymies

Even if you have always been perfectly supportive in the way your Lymie craves, they may still lean towards clamming up. If they are, my hope is that you will shower them with a feeling of safety, kindness and patience. As I have told you before, watching a loved one be sick is incredibly hard. Your job is hard. And I’m sorry for the struggle and helplessness you often feel along the way.

But since you desire to help, let me offer you some practical suggestions of what to do with the information I just shared:

  1. Mimic my encouragement that your Lymie is awesome, courageous, and strong simply for living, for continuing on.
  2. Keep inviting them to participate in your life (attend the birthday, make muffins for the bake sale, grab a coffee, read your manuscript)… Because even though it is a high cost, they want to be included. They want to try to be there. They care for you, and want to be part of your lives as much as possible.
  3. Communicate continually that their presence in your life is the real gift… That there is never any expectation of their doing more than what their bodies can do in the moment.
  4. Acknowledge that you see the offerings of their heart, and that it is more than enough, and appreciated.
  5. As always, I recommend offering any help that you are able. Chronically ill people have this tendency to think that people will eventually tire of taking care of them, so they stop asking… though what they are going through never gets better. When you think of it, when it is a fit for you… offer your help.
  6. Have grace any where you can. Living in high pain has a way of eating at you, and wants to consume you. Even with the best of intentions, your Lymie may wind up cranky, angry (at themselves, at the circumstances, or at you) as they realize that the cost is higher than they imagined. They may have over-committed and need to back-out, as their body wore out before expected. Your job is to “cover” for them when they can’t do what they hoped… to “cover” for them when they need patience or comfort… that’s hard, and beautiful. Having grace. Choosing to “cover” for them is amazing. You get to be amazing too.
  7. Remind them of all of the mushy, heart-warming, true things. Remind them that just because they are operating at a low percentage, doesn’t mean that they, themselves, have disappeared. They are just as “them” as they were before. They aren’t hollowed out. They still bring something to the table simply by being themselves. You love them always, and believe the best about them.

Finally… Have you ever felt an earthquake? Where I live, I’m constantly feeling tiny tremors, but I’ve never felt a big quake, certainly not anything inducing damage. Lymies live on the fault line. They feel the big impact of their actions and circumstances (controlled and uncontrolled) every day… Where the rest of us might only feel tremors. It’s exhausting, frustrating, and their body is actually falling apart. The problem is that the damage is hard to see. But it’s there, and the more we acknowledge it, the less confusion and misunderstanding there will be. I think we all want good relationships. It’s when life is shrouded in mystery, walls, pain… that we feel separated. So, let’s all keep talking. Let’s drag this thing out into the light, and take joy in being together.

While we wish Lymies did not have to pay such a high cost for small actions, let’s remember that we pay high costs in life for valuable things… and then we hold them dear. The smiles, the laughs, the little acts of service are big, beautiful, and meaningful. I delight in that. I delight in knowing what is valuable in life.

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One comment

  1. Alicia Ybarra · September 28, 2016

    This is so relatable to so many. Love that you share such intimate details. I know that it sometimes seems not intimate because it’s in your face all the time. But it’s so many peoples reality and words sometimes don’t do a situation justice. I often say I have a lot of questions for God, but unexplained illness, although seemingly small, is everything to the one walking in it. Please feel free to come lay with me and cozy up anytime. Well, other than between 8-6, Monday through Friday, when I have to do that daily knock on gods door asking him “why and when will this be over.” Love you!

    Like

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