The Naptime Conundrum

Naptime. A time of day often coveted by parents of young children and dreaded by the children themselves. What other time of the day do you have no one pulling at your legs, asking question after question, or coloring on the carpet? In fact, as I write this, I am babysitting a little one who is napping. Peace.

Such is not the case in the life of this woman with lupus. For me, naps are a necessity, not a luxury. Louie has made it clear that if he gets twelve hours per day to sleep, I can have the other twelve to do with whatever I’d like. If he doesn’t get what he wants, it gets bad in a hurry.

Most mornings, I run through my plan for the day and portion out my time. It will take me so long to get to work, and then I’ll be there until whenever, and drive home. Will I have time for a nap before I have to start my evening plans? (I only have set plans one evening a week, mind you.) Will I need to get off work early in order to nap? What if I didn’t nap? I could just go to bed at 7…

Daily, I have to decide what’s important to keep and what can go. The amount of people I can see in a week and invest in well has gone down quite a bit. Many times, I miss it more than I can explain. The things I love most are now given fewer hours, as Louie is more demanding than ever. I got a real good look at what my actual priorities are when I had to start cutting from the bottom and work my way up. There were some sucky decisions to be made.

In order to function sort of as a grown-up, I have to have income. Therefore, I can’t not work. But I can work less. Coffee with people all week has all but stopped- partially because of the time, and partially because of my reduced income. There are about half-a-dozen people I make it a priority to see, but anyone after that is just bonus. It’s rare now that I do lighting at church, which I love, but instead I am training new young pups to do my job.

Possibly the hardest thing has been to have less time and less energy to spend with my beloved high school students. I still give what I can, and often walk away spent. There’s nothing I wouldn’t give for them. My weeks are planned around making sure my Wednesday is set up for success- success in rationing my energy to have my best to give to them.

Over and over I have watched God give me exactly what I need right when I need it. It is true that He supplies our every need- even if it’s 14 hours to sleep, or to make it through the day without a nap. For that, I will rejoice… when I wake up.

Grace for Us

Over the last few months, I have been reading and thinking a lot about grace. Unfortunately, those of us in the Church are often the least able to extend it, and I have watched a dear friend of mine be the recipient of such ungrace. Thus, the search in my life.

Anyway, amongst other things, I am reading Philip Yancey’s book What’s So Amazing About Grace. In one chapter, Yancey describes all of the things that made the Jews of Jesus’ time unclean. You see, according to the law of Moses, there were several foods they couldn’t eat, along with other circumstances that made them unclean. If they were in a state of uncleanliness, if that’s even a word, they were not allowed to enter the temple or worship God, and in some cases, touch other people.

Having heard all this before, it was sort of old news to me. One thing, though, caught my attention. Yancey went on to explain that many people were banned from the synagogues and worship and declared unclean because of diseases. Rashes, sores, cleft palates, arthritis, any deformations, and countless other things counted people out.

That got me thinking.

I started wondering how many of us would be kept out of worship because of our disease. What if we were the ones who were banned from what we most wanted to do because of a circumstance we didn’t choose (and certainly don’t want!) For those of us with lupus, best known as the “look good, feel bad” disease, this may not be the case. Most people can’t see that we are sick, unless the unsightly “wolf cheeks” gets a hold of us for the day, and even then, some people may not notice. But what if lupus were more visible, like muscular dystrophy or Down’s syndrome or even skin cancer? People with these, not unlike myself, would be barred from church, from worshipping the God of the universe.

This epiphany led me to two other thoughts.

First of all, I am even more thankful that God sent Jesus to pay for my sins and that we are all saved by grace. We didn’t deserve it, and we certainly aren’t good enough, even the healthy ones, to earn it. Plus, since Jesus came, we no longer have to follow so many rules to get to God. Ceremonially unclean is not an adjective I ever have to worry about.

Beyond that, though, I wondered how much grace I extend to others- with physical ailments or without. When a man in a wheelchair comes to the door at a restaurant, do I get up to open it, or watch as he struggles. Do I hold the elevator or some other door for someone who may need an extra few seconds, or am I too busy? Do I forget to greet people at church because they are somehow different from me?

Sin is the great equalizer. We all are sinners. We all are the same. Even if we don’t look it. I am eternally grateful that Jesus broke down the wall between me and the God, and also the wall between me and people who don’t look like me. I’m glad God has grace for us, too.

Nothing's Gonna Hold Me Back

Often in my writing, I use songs as jumping-off-points for my musings. Oftentimes, they are worship songs that I hear at church or on the radio.

A few weeks ago at church, we introduced a new song by Tim Hughes, called “Holding Nothing Back.” It’s a fun song, with some good lyrics, but didn’t stand out to me. I’ll come back to it, though.

About two weeks ago, I had to make my very first employment decision based on Louie. I had been working 40 hours a week and preparing to move up to management, which would entail working 45 or more hours per week, but included salary and benefits. In a hard decision process, I realized that working that much wasn’t actually a reality. As it was, I was working and sleeping and working and sleeping. Everything else that I care about or enjoy had been cut out of my schedule. The only thing I had kept was a few hours of ministry per week, but that was about to get cut too, when I talked to my bosses. As hard as it was, I really didn’t have enough energy or strength to make the decision to work more. In hindsight, it was a great choice.

So, since I all of the sudden had a lot of time on my hands, I got to do more ministry. Due to some transition at church, there actually was a lot more for me to do than usual, which was exciting for me. Still working a few hours a week at my job, I was working 50-60 at church. Yes, it was hard, but relationships were growing, I was getting to do something I love and teach others to do it.

After an entire week of days lasting longer than they should, most without a nap, I drove to church in the early-morning hours of Sunday. The sunrise was beautiful! I went inside, and set up for a crazy day of artists and musicians and technicians and God. By this point, Louie was getting jealous of all the attention other things have been getting, and he started acting up. But then the worship team started running through the set for the day, including this song.

As I ran around like a crazy chicken, up into the catwalks, checking on painters, rounding up stage crew, this phrase kept running through my head. “Nothing’s gonna hold me back.” I was dancing!

Often, I think, it is our decision (more or less) what we’re going to let hold us back. Maybe we change our standards a little, and don’t get held back from what we love. (When I was 18 and 19, I did 30-40 hours of work at the church, the same amount at my job, and was in college full-time.) It would have been easy to let pain or swelling or exhaustion keep me from doing what I love, and what I had set out to do, but I didn’t. It was only by God’s grace that I made it, and did my job as well as I could.

Granted, finding the balance between what our bodies and diseases want and what we want to be able to do is tough. After spending 6 long days working, I felt like I had been hit by a truck, and spent an extra 6 hours in bed the following day. This, though, was worked into my schedule. I saved that Monday for nothing other than resting, giving Louie the attention he wanted, and doing silly things like laundry that had been neglected for a week.

What’s holding you back? Should it be? What do you want to do and how can you make it happen?

I read this quote on someone’s forum page, and it resonated within my soul.

“Perhaps we are like race horses - one of the old traditions was to 'handicap' the greatest horses so that they would not run away from the pack. They would pile on lead weights; whatever was needed to get up to the amount of weight the handicapper said they should carry. We're handicapped because otherwise the world could not keep up with us.”

What We Lose

A common topic in writings such as these is the amount of things we lose when we get sick. Some people lose the ability to walk, others end up losing their careers, and still others the ability to do what they love- be it working out, doing intricate work with swollen hands or staying awake all day. Yes, we’ve all lost something due to illness.

For me, the biggest thing that I’ve lost, specifically due to the combination of Louie and a full-time job, is the energy and time to spend with the people I love most. I have more or less pared down the relationships I have, into an amount I can handle to just a few, and even those are not where I’d like them to be, as I only have a few hours a week to spend with people. Most of the other things I can live with losing, but losing the people in my life is the hardest.

Tonight at church, we sang a song that thanked Christ for going to the cross and for giving his life. It got me thinking.

I wonder what Jesus’ childhood dreams were. Was He excited to become a carpenter, perhaps the best carpenter in Nazareth? Did He want to do something else? Was He hoping to get married and raise a family? As He got older, did he realize that those things would never happen?

The night before He was captured, in the garden of Gethsemane, He prayed that if God had any other way to accomplish His will, could the cup of suffering please pass by Him. Generally, people understand that Jesus was not wanting to go through the pain and suffering and dying He would experience in the next few days. I completely understand that. But, I wonder if there was a part of Him that wasn’t ready to die, as in, He had more hopes and dreams and things He wanted to do and accomplish.

Jesus was approximately 33 when he lost His life. If we remove the God-Man part of it, which tells us that He is alive in heaven, and only look at the part where He was human, our perspective changes. A big reason why God send Jesus to live here with us is so He could experience all the aspects of being human- all the emotions, growing up, pain, the flu… He felt sad at the loss of loved ones, maybe got made fun of as a kid, and I’m sure He had hopes and dreams for his adult life.

I look at my situation with Louie, and I know that the rest of my life is changed. I will lose out on some things I was hoping to do, but I’m gaining other things, like wisdom and patience. Did Jesus look at His life and circumstances and feel a sense of loss at what He wouldn’t have because of a life cut so short? He lost more to be our Savior than we ever will due to a disease.

More important, though, I think isn’t the amount of things He lost, but that He made the most of all the time He had, despite circumstances. Everyday was lived doing the will of God.

What am I using my time, energy, circumstances for? Does my sense of loss overshadow what I can still do?

What is Unseen

In my Bible, I have several passages next to which are marked “Louie.” These are pieces of scripture that directly pertain to illness in some way. One of which I was recently reminded of. It is found in 2 Corinthians, where Paul is writing to the Church in Corinth and reminding them of what they have learned, who God is, and encouraging them to keep going. The end of chapter 4 and the beginning of chapter 5 is where I have underlined.

That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever. For we know that when this earthly tent we live in is taken down (that is, when we die and leave this earthly body), we will have a house in heaven, an eternal body made for us by God himself and not by human hands. We grow weary in our present bodies, and we long to put on our heavenly bodies like new clothing. For we will put on heavenly bodies; we will not be sprits without bodies. While we live in these earthly bodies, we groan and sigh, but it’s not that we want to die and get rid of these bodies that clothe us. Rather, we want to put on our new bodies so that these dying bodies will be swallowed up by life. God himself has prepared us for this, and as a guarantee he has given us his Holy Spirit. (v 4:16-5:5, NLT)

Wow. That is one packed passage!

Paul covers or dying bodies (and who doesn’t feel like their body is dying with lupus or something else?), our troubles are small in comparison and won’t last long compared to eternal life in a perfect, painless body (but sometimes our troubles don’t feel small!), and some of those troubles are unseen (hello, invisible illness). Yes, we grow weary in our present bodies- the constant pain, swelling, or malfunctioning is exhausting! We groan and sigh and just would like to get cash for clunkers for the ones we live in! But Paul reminds us that God has prepared us for this; that he is taking care of us, and in the end, we’ll get a different dwelling place. How nice does that sound!

The part that most popped out to me today was the part about focusing on the unseen (v 18). (In most translations, it reads: So we fix our eyes not on what is seen, but on what is unseen.) Many autoimmune diseases are known as “invisible illnesses.” When I first started researching lupus, the two common phrases I found were “but you don’t LOOK sick” and “look good, feel bad.” Both are true. Fortunately, and unfortunately, lupus isn’t a disease that most people can see when they look at you. Sure, maybe you have a bit of a rash on your face, but other than that, nothing physical, generally.

The funny thing is, oftentimes when we’re sick, what remains unseen is all that we see. Honestly, I look at everything, every plan, every trip, every job, through the lens of lupus. How will it affect my health? Will I be able to nap? What about when I need to take my meds? In our case, what is invisible is seen, and is not what we need to focus on.

After this life on the earth, our bodies will become worm food. The pain will be gone. The swelling will disappear. The rash will vanish (haha!) That body, whatever it looks like, is the one that will last forever. I plan to use this body completely up, wear it out, before I’m through with it. And, most days, it seems Louie is helping me do that!

I’m not saying that I’m not going to take care of myself- take meds and naps and things like that- but I’m not going to let the Louie-colored glasses affect my decisions on how I live. He will not keep me from truly living. Yes, my life is altered from that which I was hoping to live, but I can still live well. Louie will not change how I love people, or the dreams that I have. I’ve lost so much to him already that I can’t afford to give up anything else.

In fact, the week I told my parents and extended family of my diagnosis, I also told them that I was spending 6 weeks in East Africa that summer. Yes, there were lots of questions and concerns, but my doctor said it was fine, and I can’t imagine not going!

Our light and momentary troubles are just that- light and momentary. Even when they don’t seem like it. When arthritis swells up my hands and I’m in pain and can’t hold a pen, that’s what I think about. But, that’s not all that life is or all that God has for me. These things will soon be gone, but God lasts forever.

The invisible-seen things should not keep us from the life God planned. And, those things, such as invisible illnesses, should not be our primary focus. “We fix our gaze on things than cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.”

Four Hours

A year into this journey, a year from the date I count my medical life “changed,” a year since someone put a name on it, I still go back and forth.

Some times, I lie in bed and wonder “am I really sick anymore? I don’t feel sick, and I’m not as tired or in as much pain as I used to be.” Then I realize that I’m in bed at 3 in the afternoon for my nap. In order to survive and somehow thrive in this new world, I have had to make some big changes and small ones. Most of the big ones have been how I handle my schedule and how much I sleep. Several months ago, I figured out that 12 hours per 24 is my optimum. 10 hours at night with a 2-hours nap. If I do this, I can function more often than not. Essentially, I schedule in times for naps and sleeping like I would appointments.

Right around the one-year mark, I got a job that I love. Full-time. That means at least eight hours a day. It took some getting used to, both for my body and mind, after two years of no set schedule and more or less doing as I please.

If you take the amount of time everyone is allotted in a single day, 24 hours, and subtract the 12 I am sleeping, or resting, you’re left with 12. Then, subtract the 8 that I’m at work. Four hours. Four hours is all you’re left with. I have four hours a day in which to live my regular life. This includes getting up and getting ready for work, unwinding after work, doing laundry and cleaning my toilet. You know, the stuff that has to happen on a regular basis. But also responding to the demands of my parents, my brother, my sister, my dog, my ministry, my grandkids, doctors appointments, my friends. Not to mention if something crazy happened like I actually wanted to do something specific just for me! Four hours for doing hobbies and making presents and writing letters and spending time with God and journaling and writing and watching movies and just being.

Now, maybe I’m exaggerating a little. I don’t work every day, just five days of every week. I have two days a week off. This leaves me with 44 expendable hours each week. Sounds like a lot, doesn’t it? Almost two full days worth of hours. Well, assuming the regular person works 40 hours like I do, and sleeps 8 hours a night, he or she is left with 72 hours. Ouch.

On my two days off, I sort of have a schedule as well, only because schedules work for me. One of them is Sunday. Some Sundays, I get to sleep in and go to evening service. Other weeks, though, I get to get up at 5:30 to be at church at 7 so I can do lights (which I enjoy doing.) Then, either before the night service or between services or whenever we can work it out, I get to hang with my sister in some capacity. Sunday is her day. On my other day off, during the week, I schedule any appointments I need to hit and then hang with another dear friend of mine. Good thing I don’t have more than two friends, because I don’t have the energy more! I love knowing that my days off are spent with those I love most.

There are a few other people I’d like to see and go to coffee with, but when? I want to see my grandkids and connect with them and see what’s going on in their lives beyond what they post of Facebook. The only times left are in the evenings or right after I get off work on the days I open. Scheduling gets further complicated when we factor in their schedules, as high school and college students tend to be busy.

All this to say, four hours a day is not enough. I want to be able to see my sister more than once a week. I want to have more time for other relationships and other things I want to do. I’m just not sure how to make that happen.

Still Me, Plus Lupus

Why the title?

I’ve been debating for months whether or not I wanted to start my own blog. As an avid blog reader, I’ve gone back and forth on whether or not I wanted to put my heart on cyber paper and publish it. Finally, I decided to go for it. Part of my decision came from the knowledge that writing helps me process so much better, and the other part is from knowing how much reading others’ blogs have helped me. Hopefully, this will be a little of both.

Then, I had to come up with a name. I wanted to have a clever URL, but one that people will remember and that means something. The term “I’m still me” comes from the title of a song by Williams Riley. The song tells of an aged man, knocking on the doors of death in his weathered body, yet, in his head, he’s still young. He’s still who he was in the good ole days. The first time I heard that song, I echoed the sentiment. “I’m still me. Beyond the lupus, beyond the pills, underneath it all, I’m still me.” I think mostly I needed to remind myself.

Shortly after my diagnosis, my sister named my lupus “Louie.” We generally refer to him has a separate entity. Some days, I spend the whole day with Louie, just taking care of him. When I wake up and find malar rash all over my face, I look in the mirror and say, “Good morning, Lou.” We both figured that since lupus is going to be a part of my (our) life forever, he might as well be embraced as part of the family.

The “plus” part in my title is really the kicker for me. In my first few months of processing my diagnosis, I read a lot and did a bunch of research. In an attempt to find someone else who got diagnosed and continued living well in spite of a chronic illness, I picked up Michael J. Fox’s book, Lucky Man. In it, he tells the story of admitting to his young son that he had a disease, and how willing Sam was to accept that. MJF continues, “Clearly, to Sam, I was still ‘Dad,’ just ‘Dad with a wiggly hand.’ Was it possibly that I could look at things the same way, that I was still me—just me plus Parkinson’s?” (p 192)

I have tried to embrace that thought. I’m still me, just me PLUS Louie. He’s a bonus. If you have me over to play games, Louie comes too (sometimes playing extra games of his own.) If I get you a birthday present, it’s from me and Louie. If I come to you wedding, I come, plus Louie comes. (Should I RSVP for 2 and get to eat extra?)

Louie is sort of like my small child- he goes everywhere with me. Except I’m not allowed to hire a babysitter.

So that’s the long and short of it! I’m still me, just with Louie as a bonus.