Disease Quantified

My doctor looks at the stacks of paperwork in front of him. His silver glasses slide down his nose and he uses one finger to push them back into place. He has just finished my daughters lengthy Lyme appointment and now she is in the next room with my husband getting poked and prodded – another appointment, another round of tests, another day spent using our energy and resources to fight this battle. Dollar signs mount in my head as he gathers up her files and places them neatly to the side, grabbing mine from underneath. He pulls each page of my medical history out of the folder like he’s dissecting something living. He lays the specimen on the table in front of him and examines all of my insides in written form.

I have a feeling he’s had a long day even though it’s only 1pm. His answers have been short and to the point. He barely glances at me as he runs down my list of symptoms and asks stoically, “Since you were here last, how would you say you are doing?” He is looking for a percentage. We’ve been through this more times than I care to remember. My first visit almost 4 years ago was a big fat 20% and that was just because I was breathing and I had made the almost 2 hour drive, so I figured I couldn’t say zero.

I know this question is coming and yet, I can never seem to answer it. Every 6 month visit, I sit in this same stupid chair, mute and blank. I sit in silence for what feels like an eternity. Just me, a nurse with her back to me typing notes, and my LLMD. I stammer mindlessly, but I can’t answer the question. I have wondered why this particular question out of the many that are asked at my appointment is so difficult for me to answer and I think it comes down to this: my health cannot be quantified into a number. I don’t know how to do that. I understand that it’s just to give my doctor a rough idea of how I’m feeling, but this disease is so mysterious. It’s always changing. There is not a good answer. Case in point: if he had asked me that same question this week, I would have said 30%. I think I’m in the middle of a relapse…I’m not sure, but something is brewing and it has hit me hard. The day before I was fine. Today, worse. 70% 30% 40% Then what?

How do you quantify days of pain, of sickness and fatigue, even one day of life with this disease? I find it quite impossible because it never stays the same. Disease doesn’t have a solid foundation. Bacteria travels. Some days the meds help, some days they do not. Remission is temporary. Relapse happens. Pain is cyclical. I push myself and make things even worse. It’s an endless loop of chronic… everything.

So, how do I feel today? About 70% better than I was four years ago or perhaps, with a shift in perspective… 30% of the person I was before Lyme took over. It’s all in how you look at it. When I think about it, my current “70%” probably isn’t the same as it would have been before I had Lyme. My standard of living has changed with a chronic illness. It goes back to “how do you quantify disease?” I don’t have the answer.

It doesn’t really matter, because they are just numbers after all. My daughter and I are much more than a number and this disease is much more complicated than a percent sign. I hope one day I can sit in that office and not have any hesitation before I can say I feel 80% better than the last time I was here. Maybe I will even get to 90.

The problem is that it’s in that pause where the fear of  the future lies dormant but restless. It’s the continual worry that treatment didn’t work or the memory of a day not long ago that was agony, or the thought of those tremors that haven’t gone away, or the constant panic that is in the background of everything wondering if tomorrow is the day it will all go right back downhill again. So the pause – that quiet hesitation – means I am running through all of these things in my head and as much as I want to be optimistic, I know the reality of this disease.

But, they are only numbers in the end and if numbers can help propel this disease out of my life, then I will do all that it takes. So, I lift my head up and I deduce the disease to a percentage point. “70%,” I say, as he continues to examine the ink blotted specimens.

I don’t know what to do with you anymore

the uninvited guest who comes and goes

feeding off of my body 

eating away the best parts of me

I thought I got rid of you once

but not without a price 

you took so many years

leaching onto my unborn child 

you sleazed your way through her beautiful veins 

making her feel the weight of your ache

but we fought back 

pills, ports, and protocols

moments of childhood stolen 

and I just wanted you to know 

our health is


you are not welcome here


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