Line upon Line

When I was a small child, I once came upon my mother and the Primary Presidency looking at a picture and laughing. It was affectionate laughter, to be clear, but I heard my name so I went to see what they were looking at. I saw a picture that had been taken of the entire Primary with their arms folded and their heads bowed in prayer. It was a sweet picture, with one oddity: one little girl (me!) had bent her whole body down so her head was on her knees. All of those prettily sitting children, and one in the front row bent over. As an adult, I can see why they were laughing!

But as a child, of course I was embarrassed. More than that though, I was amazed: until that moment, I didn’t know the other children weren’t bending over the way I did! Sitting upright and bending my head down was deeply uncomfortable, borderline painful, so I had always bent my whole body over. My blessed parents never criticized or corrected me, and I was not adventurous enough to open my eyes during prayer. So, I had always assumed bending over to rest on their knees was how people bowed their heads.

After seeing that picture, of course, I started trying to sit up and bow my head like everyone else, but it was always a struggle. The older I grew, the less willing I was to bow my head at all (especially if there was any likelihood of the prayer going long.) I often kept my eyes open, looking around as everyone else prayed properly. I was doing it out of discomfort, but… it’s not that uncomfortable. If I had been truly humble, and fully obedient, I would have bowed my head. The fact that I didn’t, I assumed, must mean I was lacking something spiritually.

In middle school I joined the track team and loved it. I was not fast or particularly coordinated, but I had fun. Except for one thing – I was constantly getting injured.

But not … really injured.

Something would hurt and I would go to my coach or the nurse or the doctor, but they could never find anything wrong. One month it was my knee, the next my ankle, then my hip and wrist, then my ankle again. I was surrounded by kind and supportive adults, but after a while I could tell they thought I was being kind of a baby. I was clearly normal and healthy, and yet I constantly whined about pain that nobody else had and that didn’t come from any sort of injury. There was no other explanation but that I was kind of a baby and a wimp.

As an adult, at one point I decided to learn to play the piano. I had always wanted to learn and I loved music, and I had a good friend who was a piano teacher, so it seemed perfect. And I was a really reliable, hardworking student! I practiced diligently and made good progress. But… there were some things I could never do. I had a hard time adjusting my volume when I played, had lots of pain in my fingers and wrists, and I got tired quickly. I tried and tried to perfect my form (which was difficult) but never got to the point where I could play without strain. I could never play loudly, and I soon reached a plateau where I just couldn’t go any faster.  All my research insisted that volume and speed and stress in the fingers all came from improper habits and/or bad form, so I must have been doing it wrong.

Just looking at my life from the outside, I don’t know what other conclusions a person could come to. I was perfectly healthy and perfectly normal, but I whined about pains all the time. I was supposedly obedient and faithful, but I wouldn’t bow my head to pray. I claimed to be working hard and carefully to play piano properly, but I couldn’t progress and had sore fingers all the time. Anyone watching me would have thought that among my faults were: a tendency to be whiny and wimpy, a pointless rebellious streak, and lazy self-deluded piano practicing. Anyone who dealt with me assumed I had low tolerance for pain or a high tolerance for being labeled a wimp.

I assumed the same thing, and felt just a little ashamed and pathetic all the time.

Then one day my husband read an article about swimmer Michael Phelps, who has a connective tissue disorder, and noticed that I had some of the markers of that disorder. A few months of doctor visits later, and I was diagnosed with Ehlers-Danlos syndrome, a connective tissue disorder that causes, among other things, joint pain and weakness, and in my case a minor wrist deformity that limits the strength and dexterity of my hands. It’s incurable and not really treatable either, but for the next few weeks I could hardly wipe the smile off my face.

I wasn’t wimpy and pathetic! My body just didn’t work properly! I was elated.

All my life I had failed to do be able to do things that were manageable for almost everyone else, and assumed that the only explanation was that I just wasn’t working hard enough or having the right attitude. I distrusted my own sense of how hard I was working or how badly I hurt because I assumed my issues must just be in my mind. And all along I just had a rare, undiagnosed disorder.

It was a wonderful, freeing thing to be formally diagnosed. But as I got used to my new reality, I started hearing certain discussions in a new way. Because we often talk about others who are struggling with the same attitude I had had toward myself – like “He must not be trying very hard; there’s no other possible explanation!”

Or, “She just went right back to it; I guess all her talk about getting clean was a lie,”

Or “He was raised right, he knows what to do, he just keeps making stupid decisions. I guess he just must want to live that way.”

Or, “She complains about this all the time; why doesn’t she just fix it?”

And so on.

As mortals, we have no sure way to tell the difference between a person who complains all the time because she has undiagnosed Ehlers-Danlos and one who complains all the time because she’s whiny and trying to get excused from gym class. Both seem, to all appearances, perfectly healthy, and both will tell you they’re really trying their best and it really does hurt! There’s no way to know for sure from the outside.

But.

Just because we don’t know that someone is genuinely struggling doesn’t mean they aren’t. Some people are doing the very best they can and it’s just not very good. There may well be another explanation besides that they’re faithless, lazy, or self-destructive.

Maybe the most difficult person in your life isn’t pathetic.

Maybe they’re just like me, pounding away desperately but uselessly at piano keys with fingers that don’t work, and wondering why why why they never seem to get better.