Don’t Judge Me for What You Cannot See

After many years of listening to the banter behind my back by those closest to me, I felt it was time to share what is happening with my health, MS and ACM, that your judgmental vision does not see.

By JD
Author, Reporter-Journalist

We live in a society riddled with people who find it hard to believe something exists unless it was in clear view.  We are fixated on the need for visual proof or substance, to acknowledge that a circumstance or event is a reality.  Well what do we do when something is not visible?  We tend to pull out the “judgment” card and claim it cannot be true, because we cannot see it!  We never take into consideration that the reason we cannot always see things is perhaps because the people going through the many health issues associated with MS and other debilitating diseases keep what’s happening to them silent for a reason.  I, personally have already seen how judgmental many are towards other people, and it’s almost heartbreaking, because I see how they judge others and wonder how they would judge me in kind.

To understand what it is like from my perspective, and why I try to never judge someone’s life from just their appearance, I will share with you a bit about my life and my personal struggles in 2015.

For those who don’t know much about me, in 2000 I was diagnosed with a rare congenital condition called Arnold Chiari Malformation.  When I first heard the neurologist tell me that, I was confused as to what in the world it was, since I had never heard of such a thing.  However it did explain the many years of headaches, blurred vision and pain I had felt as well as other odd and unexplainable symptoms I had suffered from for over a decade.  To understand more about Arnold Chiari Malformation, also known as ACM, you can find very informative information here.

https://rarediseases.org/rare-diseases/chiari-malformations/

To top it off, right after I had decompression surgery that failed, I was diagnosed with Multiple Sclerosis.  I got the two for one deal!  How lucky could I be?

Over the majority of 2015, and the previous years, I have been watching myself transform from a healthy, active, invincible woman to a constantly sick, usually grumpy, sometimes defeated, partially disabled, occasionally immobile, and more often than not, needy person. I know what it’s like on both sides now – I’m on top of the fence.

Lately I’m at a tipping point and I know which way I’m tipping. What goes up must come down. My fence has a greener side, the side I allow others to see, but the other side of the fence is perpetually somewhere I’ve already been a few times, hate visiting, but know that eventually I will be permanently on that side. Some days it is as if my fence is a prison wall and I have multiple life sentences. Since there is no cure for MS, and when you add ACM into the mix, I already know that one day I’m not getting out of this alive, so I do my best to just live. In your perfect world, you don’t see this, because of your judgmental views and inability to not see what is going on when you’re not looking, you don’t comprehend, that for me, it’s all downhill from here.

Happy birthday, here’s another medication for you to be a guinea pig and try.  Ready for narcotics yet?

What about steroids?

How’s your infusion this month?

Oops, those side effects really took about a week of functioning from you….let’s try a new drug before that last one leaves your system and hope for the best.  We’re playing the medication dart board: bull’s eye on that last drug cocktail!

I can see myself now. I’m becoming that grumpy old woman with resting bitch face to hide the hideous pain. I’m becoming that woman everyone feels sorry for and others don’t know how to approach because she might explode.

How terrifying to become something we’re all afraid of.

I emit subtle grunts and gasps of masked pain and now it’s happening startlingly unbeknownst to me in public spaces. I am all the time hoping you never notice.  I just have to make it as long as I can, until I find myself alone, to let out a huge gasp and thank the good Lord, I was able to contain the unbearable pain to myself long enough.  It’s like a fart you don’t realize you let out in a crowded elevator. Who DID that horrendous thing?

Now do you understand why I prefer to stay to myself most of the time?  Do you comprehend why I only escape my safe retreat when among those whose eyes aren’t blinded?  Or be cast aside as the friend or family member who is no longer invited to do things with others, or the individual left out because no one wants to be around someone suffering in pain.

For those who are accepting and understanding, I’m sharing my vulnerability without choice, with people who do not know me, and whose only duty is to hold or withhold judgment of this masked-pain crusader. I am exposing myself to you, the doubters. I am a warrior in my own mirror, but society is not a mirror. In my own space I occupy, I am a saint, I am a god, I am constantly overcoming or succumbing. But to the crowds, the masses, the hoi polloi, I am a poor wretched soul who needs to suck it up and shut it up.

I learned a lot about how others perceive me while working a local convention and overhearing fellow volunteer staff people this past May comment about me, not being aware that I was right around the corner and hear it all.

“For crying out loud, she doesn’t look like anything is wrong with her. She don’t look sick and should suck it up, and just work harder, anyone else could do that twice as fast”.

Shame is, they are just like most of you.  If one cannot see me a total wreck and in total dysfunction, they ASSume I am fine.  How little they know the performer, the actress I have become.  You just think I have become an introvert, who chooses to not participate.  You think I opt to be left alone, not invited to do things.  You think because I post on social media all the exciting things I do, means I am always busy living life, when actually I am masking my illness and struggling hard to hide how I feel just long enough to make memories to carry me through when the time comes and all mobility is lost and all I have is memories.

Then there are the semi-doubters. Many of us you see who are broken, you know us only in our current brokenness. But;

Remember, many of us once were full of life, full of vigor and energy.

Remember, many of us still recall the days we had full control and freedom with our bodies. We desired everything and still believed nothing could keep us from being professional business persons with great careers, soccer players, chefs, teachers, doctors, ballerinas…
Remember, when you see me that I once was like you, healthy and full.

Remember that I still remember what I’ve lost and will continue to lose more of.

Remember, I still have hopes and wishes and dreams, and they are no less important, no less meaningful, and no less worthy than yours.

I love. I dream. I hope. I fight. I need. I survive. I succeed and fail. I live. I am no different than the other people you judge who have an illness that is unpredictable, incurable, and is not always visible until it is about to take my life from me.

We hide the pain because it’s stigmatized, but also because we want to hide from ourselves. These bodies, our bodies, get so heavy we just want them gone. We want to get away from our own prison walls that we did not choose. Our sentences are binding, prophetic, and soul-wrenching. We often wonder what crime we could have committed in our mother’s womb to invite lifelong pain and degeneration. Fairness is a big deal and we battle the meaning of fair with every breath. Why us?

Our tears bathe silent pillows when the world is sleeping. Our cries go unheard when we try to recount them in the cold, sterile, institutional exam rooms we visit more frequently than we care to recall. Our second home is a white paper covered cot with pokes and prods and needles to track the progression of our losses. The humiliation of a gown with gaping back exposing us, we try desperately to pretend is laden with silk, and not so revealing. Home is where the heart is – broken and beating frantically in our throats during the MRI results, lab results and the words “things are progressing”.

Our second shifts (if we can work at all) are the lunch hours and after-hours we spend on hold with pharmacies, doctors, insurance companies, arguing about our medications and considering robbing a bank to pay for them, in hopes to extend the inevitable doom that’s lurking.  Then there is the waiting in long lines for a new prescription that will take full weeks of our lives away from complicated and frightfully severe side effects, while you wait in line for tickets to the hottest new concert coming to town and complain that the wait was uncomfortable.  Our vulnerabilities lie dormant until we stand, embarrassed and demoralized, in a crowded room to beg for some quiet because our head is spinning; or when we place ourselves in front of a congregation of people and ask someone to please drive us home right now because we’re sick, so sick.

You, the people, fight in elections for our own versions of political and social progress.  While me, the chronically ill individual, stage losing fights in my sleep for disease regression and a return to my traditional body. I want an end to this gut-wrenching, spine-aching, head-spinning, disabling gift of my precious sick body. The concept of “mind over matter” muddles with the unpredictable, calculated precision of autoimmune inflammation causing seizures and spasms and this 51-years-old-turning-75-next-month feeling becomes overwhelming.

I am among many like me. We are still alive but we grieve the loss of who we were before this weight of helplessness and disease was inserted into our chest, our brains, our backs, and our hearts. We have been blessed with the curse of witnessing and grieving our own symbolic deaths as we learn to be something or someone we never imagined we’d see in the mirror. We learn to see ourselves from the outside looking in (while desperately peeking outward) because we are strangers in these new bodies and we may never know how to inhabit their unpredictability. If the pain doesn’t take your body the side effects of the pain medication will.

We are not strong, we are not admirable, we are not role models because we woke up and chose to be.  We are strong, admirable role models because we have no choice but to fight for sanity and purpose every day of our lives, with every beat of our heart, with every step of our feet or our cane or our walker or our wheels. What we do is not commendable because our career dream as a third grader was to become a chronically ill warrior.  What we do is commendable because we do not give up the fight against what we did not choose to become. Because we have two choices: give up or fight.

Be with us. Remain with us. We were once leaders, friends, confidants and business professionals. We did not change, our bodies did. We are still leaders, friends, confidants and professionals. We are also sick-bodies, and we’re here until we’re gone.

Love us. Accept us.  Stop judging us for what you cannot see.

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