Many people are on disability for a clearly apparent reason.  It is obvious, when you see them get out of their car in the handicap spot that they are disabled.  Many others though, don’t appear to be disabled.  That is my category – the disabled ghost.

It is embarrassing and frustrating to repeatedly hear “you don’t look sick” or “you should get a job doing…..”.   A few days ago I stumbled upon the best description of this I’ve ever read.  It is called

The Spoon Theory

by Christine Miserandino

 

Miserandino has Lupus, and she was asked by a long term friend what it really felt like to live with a disability.  They were at a diner, and Miserandino came up with the Spoon Theory to explain it.

Essentially it goes like this.  Let’s suppose that each spoon equals an activity of daily living.  When you are not disabled you have an unlimited amount of spoons.  You wake up every day and go about your normal routine, showering, getting dressed, eating breakfast, leaving for work, all with little thought.  You are on autopilot,  because you have unlimited spoons.

People who are disabled though, have a finite number of spoons.  Lets say I’m having a good day today.  I’ll start my day with 12 spoons.  Each activity I engage in requires I hand over a spoon.  My shower equals a spoon.  Getting dressed is a second spoon.  Eating is a third spoon.   Before I’ve even left my house I’ve used up 3 spoons.  Leaving the house uses a spoon, running errands uses several spoons, exercising uses a spoon or two, socializing another spoon or two.   By noon I’ve used well over half of my spoons, yet  I still have to get through housework, homework & dinner with my son, walking the dog and preparing for bed.  By the end of the day my spoons are all used up, usually by 7 or 8PM.

There are days that I might have more energy than others, and on those days I’ll use more spoons.  But I will pay for that.  Using more spoons tomorrow means that on another day I’ll have less spoons.  At some point I will have to recover from my overindulgence of spoons, and the only way for me to do that is to have a day or more in which I use less spoons.

This was a great way for me to visualize my life.  I’ve been healthy and I’ve been sick, so I know the difference.  When I was healthy, I never thought about whether or not I could get through my daily routine.  I was up at 5:30 and kept going till 10 at night.  Yes, I was tired, but I always knew I was able –  I had an unlimited amount of spoons.

Now, I wake up every morning and assess my spoon allotment for the day.   If I’m feeling well, I know I have 12 spoons.  Some days I feel well enough to use 14 spoons.  Some days I go crazy and spend 20 spoons.  Always though, I pay.  There is a finite number of spoons available to me, always, and I have to think about every thing I do.

Today was a great example.  It is fall, so I am “putting on my winter lungs “as I like to call it.  I am starting to cough more, I’m wheezing  when I breathe, I feel my chest constricting, and I’m requiring more nebulizer treatments each day.  This happens every year, so I’ve come to expect it.  It will last until late spring and, if I’m having a good year, I’ll get a break over the summer, then start up again in the fall.  (I’m allergic to molds.  All of them.  Falling leaves, spring showers, indoor molds, molds in our bodies = bad).

I haven’t been feeling well, and I’ve spent most of the past 4 days in bed.  Today I was determined to make it outside.  I did.  I got up and showered.  I ate breakfast.  I went to a noon yoga class, then the grocery store.  I came home and rested, then made dinner & cleaned up.  That’s a great day for me in the fall.   It could be that I over extended myself, because tomorrow I have to work 4 hours.  I’m hoping I didn’t use tomorrow’s spoons today, but I won’t know until I get to tomorrow.  If I use up too many of my spoons between today and tomorrow I’ll have to cancel the educational commitment I have for Thursday morning.  I hate having to cancel things I’ve agreed to do, but I have learned that when I am out of spoons, I have no choice.

My mother is one of my greatest fans.  She is convinced I can do anything (thanks Mom!) and she loves to tell me so.  I’ve tried for years to get her to understand the limits to my existence, to no avail.  Last winter she got bronchitis.  She was down and out for about 2 months.  (I was actually getting very worried, but she did eventually pull out of it.)

While she was sick I reminded her that her current state of being is, more often than not, my state of being.  In that moment, while she was sick and counting her spoons, she understood.  She realized that she had to make choices every single day about aspects of daily living.   If you choose to take a shower you will fork over a spoon  (hahaha!).   She was extremely frustrated during this illness.  Not only was she severely limited, but she looked well.  When her friends came to visits they said “you look great, you should come to pilates”.   In those small, humiliating moments, she understood what it means to have a hidden disability.

Alas, she got well.  She is no longer counting her spoons.  Her time counting spoons was so short and unusual, she doesn’t really remember it.  If I were to ask her today how it felt last winter when she was sick she would have a vague memory of the tedious nature of daily living while unable to breath, but she wouldn’t inhabit that memory.  I suppose it’s somewhat like childbirth.  We leave the experience knowing it wasn’t much fun, but we can no longer imagine or feel the pain.  Our brains are wired to protect us in this way.

The final piece to all of this is our pride.  Having been a fully functioning, strong, independent woman, I have a barometer of comparison.  I know what I could do, if only my asthma weren’t severe, or my immune system a mess, or my allergies off the charts.  I’ve lived a life of wellness; I’ve proven myself capable.  So in the back of my brain I have a whisper that says “Are you sure?  Are you sure you have limited spoons?  Maybe you’re making it all up?”.   When I can hear myself breathing, or I’m coughing up a lung I can squelch that voice.  I can say “hear that, dummy???”.  It’s those in between times that create the struggle.  Those days in which I have a full 12 spoons are the problem, because I know there will come a day in which my spoons are gone.  I know that no matter how tempting it is, I must be careful with my spoons, because if I use them all up I’m in big trouble.

I hope there comes a day in which I no longer feel the need to justify my existence.  I pray for the day that I think “it’s okay to be sick, you still have much to offer”, but I fear that day will never come.   I also pray most of you will never have to count your spoons.