With MS, it’s OK to let people see the unedited version of ourselves

Last week’s column almost didn’t happen. I’m trying out a new-to-me medication for cognitive issues, and it affected my writing process.

About halfway down that medication’s list of possible side effects was “abnormal dreams,” reported by 10% or less of users. As luck would have it, I’m in that 10% because I’ve had some impressive ones. Nothing scary, but nothing particularly enjoyable, either — just long, memorable, and very, very detailed.

You might think that those long periods of rapid eye movement, or REM, sleep mean that I had some restful nights, but you’d be wrong. After each dream, I spent about three hours awake, and then repeated the cycle until morning. That pattern, combined with a few other side effects along with my usual multiple sclerosis (MS) fatigue, led to a couple of particularly hazy days.

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Fortunately for me, that only lasted for the first few days I took the medication. Unfortunately for me, it showed in my writing. What I’d written looked less like a column and more like a collection of words assembled under threat, and very much against their will.

My usual method is to flesh out a column three or four days before it’s due, then review it about 24 hours before the deadline, make any necessary changes, and turn it in. Last week, when I opened the document to review, I wondered who exactly had written it. Entire sentences were missing, and there were multiple examples of incorrect or even inappropriate word choice. You should be glad you never saw the unedited version; it would never have survived the editing process.

My ‘unedited’ life with MS

Like the original version of that column, so much of my life with MS is never seen by the average person. What the majority of people see is the edited version.

I’m not sure exactly why that is. I’d like to think that I hold on to myself so tightly because I want to shield people from what might scare them. However, I’m beginning to think that I might be the one who’s afraid of letting anyone know what my life is like when it’s unedited.

What is my rough draft? Believe it or not, my readers get to see a somewhat more realistic version of me, but it’s probably because they’re also intimately familiar with MS. Still, readers here only see a 400-to-800-word snapshot each week. The truth is that I’m every bit as angry, frustrated, tired, and even depressed at times as anyone with this chronic disease. Edited can be dishonest, and even though I sometimes might be a little dishonest, I don’t want to be.

Who gets to see and connect with my honest self? Sadly, it’s the people who are around me the most, which means the people closest to me, the people I hold dearest. It often seems like my family suffers as much from MS as I do. After all, if I’m going to lash out, it probably won’t be to a stranger. Unedited may be honest, but it can also be cruel.

Conversely, my healthcare team, doctors, nurses, and therapists sometimes get the edited version. That’s wrong, too, because they’re the ones who need to see a real picture of me. I don’t know how many times I or my wife, who is my caregiver, catches me telling a provider that I’m doing well when it’s pretty obvious that I’m not.

I’d like to think that’s because I read all my own medical notes, and the truth often hurts to see in official writing and makes me want to edit what I present. It hasn’t always been this way, but today I try to be honest with healthcare providers because being unedited leads to me receiving the best care possible.

I wonder if my reticence to present my unedited self is just my pride and ego getting in the way. Am I afraid someone might feel pity and that it’ll grate on me? Maybe I’m afraid that if someone feels sorry for me, then I will, too. I still do sometimes, and I’m ashamed every time even though I’d be the first to tell someone with MS that it’s OK to feel sorry for yourself sometimes.

Unedited can also mean giving yourself grace — and being able to accept it.

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