When I was young I used to love the funhouse mirrors. You know the ones; you stand in front of them and your body’s reflection becomes completely distorted. Some mirrors make your hands look huge while your head is the size of a marble. Other times you might get lucky enough to find the mirror that gives you the TINIEST of waists with the only ill affect being a nose the size of your entire face (but really, who cares about your nose when your waist is that tiny?!?!?!) There were all sorts of funhouse mirrors, each with their own unique way of distorting reality.
As I have grown older my love of funhouse mirrors has diminished considerably, perhaps it is because I know that the image I see before me is not real, or maybe it’s because I realize that those looking in the mirror as I stand before it aren’t seeing the real me. Either way, I have grown to dislike the funhouse mirrors. Ironically of course, as I grew to hate them more and more they became more and more a part of my life.
For those who don’t know, some 8 years ago I was diagnosed with a disease called Mixed Connective Tissue Disease (but let’s call it MCTD – shortening it makes it sound so much cooler… dontcha think?) MCTD is a rheumatic/autoimmune disease that affects the many different soft tissues of the body, including the usual suspects (cartilage, tendons and ligaments, etc.) and some not so usual suspects (the eyes, blood, kidneys, hair, etc.) It is a disease wherein my body attacks itself. It recognizes my own tissue as a foreign body and goes into attack mode. Essentially… I am allergic to myself. Yeah – bizarre… I know!
Yes, in the world of rheumatic disease there are some bigger and flashier celebrities, such as Scleroderma, Rheumatoid Arthritis and Lupus. So, in order to better understand MCTD, just picture the cover of the National Inquirer doing an expose on the scandalous love affair between Lupus and RA wherein they parented a secret love child… that love child is none other than MCTD! Yes, I get the best of both worlds. I have the blood of a Lupus patient (I don’t care what you say Dr. House… sometimes IT IS Lupus!) and the joints of an RA patient. Some package, huh?
Having MCTD has certainly not been a walk in the park. During the past 8 years I have developed a serious hate-hate-hate relationship with this bastard love child. It has taken a lot from me, thereby forcing me to hate-hate-HATE it! It has taken away months of my life as I recuperated from surgeries, illnesses and injuries. It has taken away my ability to easily do certain mundane tasks that my joints used to do almost reflexively on a regular basis. It had even stolen my hair for a few years there. Still though, the one thing that it hasn’t been able to get its grubby little cells on is my sense of self, my sense of the REAL me.
It is difficult, I won’t lie. MCTD has turned into my own little no-so-funhouse mirror. I carry it with me everywhere I go and try to keep it out of view of curious onlookers as best I can. Try as I might though there are times when my MCTD mirror is on display for all to see. Sometimes, my MCTD mirror makes things seem as though I am weak… I certainly am not! Sometimes it makes me look broken… wrong again. Your standard onlooker would probably take one glance at me through my horrible looking glass and think that they understand the reality… that they understand who I am… that they see the real me. But as anyone who has stood before a funhouse mirror knows, what they are seeing is not the REAL me… it is just a distorted reflection of who I truly am.
My MCTD mirror somehow always emphasizes the wrong parts of what makes me… me! (Yeah, that awesome skinny waisted mirror? No such luck, I didn’t even come close!! And I TOTALLY would have settled for a cantaloupe-sized nose too!) No, my mirror reflects the parts of me that scare me the most. The parts that I detest the most. The parts that hurt the most. Someone looking in my mirror might mistakenly see weakness, vulnerability and limitations, because in my mirror they seem to inflate a thousand times over.
But what about the real me? Yes, my MCTD mirror would have you believe that I am weak, because my MRIs and X-rays say so. But if you take a good look at me… the REAL me, you will see that I am stronger in so many more ways than the mirror can reflect. My mirror might have you believe that MCTD has given me tremendous limitations, but if you walk away and look at the REAL me, you’d see that for every limitation, I find a way to get around it. Most of all, and WORST of all, some onlookers passing by, taking a quick glance at my reflection might think that this disease must have taken away my passion for life and my sense of humor, the essence of who I truly am. This is, I believe, the most terrible illusion of all. Because if you look at me, through knowing eyes, you would know that it is those very things that give me the strength to take my mirror and throw it in the corner, free from prying-yet-sympathetic eyes, and allow me to grow each day and surpass each challenge as it comes.
Yes, MCTD, has tried mightily to take me down. Certainly there have been times where it has been close; and there are even days when I too have a hard time discerning between the reflection in the mirror and the woman who stands before it. Yet with each difficulty I have miraculously found the ability to forge on, move ahead and to keep on laughing while I do it. Sometimes it took more strength than I alone could muster, but I am blessed with many people in my life; doctor’s, family members and friends, who when my own strength fails me, have been and always will be there to lend me some of their own. Sometimes I need their shoulders to lean on and other times I just need them to cry on, but between my “people” and myself, I always seem to find a way to take that mirror and hide it away, even if only for a little while.
No, MCTD isn’t the sexiest disease out there; for G-d’s sake, it doesn’t even have a cool name! But it is mine, and I’m stuck with it. My mission now is to get over the fact that I am carrying around a mirror, and instead focus on the real me. Focus on who I am, what I want out of life and how I am going to go about getting there. One day I will have the strength to smash my MCTD mirror for good and walk around without a care in the world as to what other people think. For now though, I will just keep my custom-made-pretty-little-European cane by my side and walk with it as proudly as I can (and if I catch you staring at me for too long... I'll just take that custom-made-pretty-little-European cane and whack you with it!)
Now how’s THAT for weak, vulnerable and limited!
