I Have a Debilitating Disease: My Truth

What an exciting title, right? As I am writing this, I am not sure that I will even publish this. You guys know I am always transparent on here, but this is something I have literally not talked to anyone about. It’s a secret I’ve managed to keep from most of the people in my life for three years and honestly, there was never a timeline in my head for “letting people know.” Most people do know that there’s something wrong with my legs and that I have trouble with stairs, but for the most part, that’s all they know. Usually they attribute it to bad knees and I’ll give a non-committal sort of nod and avoid giving a real answer. To be quite frank, I just don’t want people in my business especially about something that is so personal and beyond that, crippling to talk about. So then, what inspired this post? The simple answer? High heels.

I recently went to the Xscape concert with some friends and as is customary, we all got cute as hell and with that cuteness comes the required wearing of heels. Not necessarily 16inch stilettos because we are just too damn old for that, but a heel nonetheless. I have long since known that my heel wearing days had come to a close, my neurologist suggested severely limiting the time I spent in them well over two years ago. For the most part, I listened. But then came the concert. I stood in the closet agonizing over what shoes to wear with my new faux leather slimming leggings which made my ass look deceptively fabulous by the way. Imagine, something as simple as picking out a shoe turns into an hour long internal battle: “How much will we be walking? A block heel shouldn’t be that bad. I should just wear flats and avoid the problems. Who wants to be the friend in flats? But they are cute flats. Heels would really set this outfit off. My legs look amazing in these heels though. Will there be stairs? Fuck, what if there are stairs?” And on and on it went. Who makes a big deal out of shoes? Me. Why? Because it’s so much bigger than just a pair of shoes. Just like the fight about the toothpaste is never about the toothpaste. This ain’t about no goddamn shoes.

It all started sometime in October three years ago. I was washing my hair and my arms were just so sore. And then my shoulders were sore. I ignored it for a while thinking that I was just lifting too many toddlers at work. Then I started noticing that my legs were so tired when walking up the stairs. It felt the exact same way your legs feel after some major squats with not so light weights. It went on that way for a while and I just kind of dealt with it. Then one day, I couldn’t write. My hand felt like there was electricity flowing through it and it was the most uncomfortable feeling I have ever felt. A few hours later and I could barely walk….my husband whisked me off to the emergency and then after that it was nothing but months of MRI’s, blood work and lots of confusion. They thought maybe it was MS then they thought a million other things and eventually they arrived at Polymyositis. I won’t bore you with the details (you can read about it here if you would like) but basically my legs, arms and shoulders get tired after ordinary activity and the muscles can gradually weaken, including your lung muscles…the symptoms can either worsen or go into remission. Right now I am managing but I will say that we will definitely be looking for a ranch style home in the very, very near future.

So. The heels. That day, I wanted to wear them. I wanted to fit into the picture. I didn’t want to have to explain why I was in flats. I just wanted to be like everyone else dammit. And so I wore them. And I was uncomfortable from the second I put them on my feet. But I wore them anyway. And yes, we had to walk. We had to walk far. We walked uphill and downhill. We walked up stairs, and down stairs. I was in agony and the only reason I was in that position was pure vanity. But I felt cheated. It would have been different, at least to me, if I had been the one to decide what shoes I was wearing. But I wasn’t. I didn’t get to decide. I feel like so many choices are not mine anymore. And it’s hard. I’m an independent, maybe too strong willed human being and the idea that something other than myself is calling the shots has not been an easy one to reckon with. I want to naturally rebel, but against what? I wore the shoes, I rebelled and I paid a hell of a price. Of course my friends wanted to know what was going on. Why did we have to wait for the elevator? Why couldn’t I go up the stairs? So when they asked the inevitable “is it your knee” question, I didn’t know what to say. I was already embarrassed, already in pain. So I told the truth. Something that I have avoided doing for three years. I can count on my hand the amount of people that know the actual truth. Something changes when people know. Then you feel like a handicap, you feel like you’re always under a bright light. People always asking, “can you take this walk?” or “we don’t have to go there, I know you probably can’t do it.” You suddenly become an invalid and I don’t want that. I do not want to be treated differently than the next. I do not want people staring at me with pity in their eyes asking me all the same questions I have asked myself every day for the last three years. As I am writing this, I am wondering how long I thought I could keep it to myself. How long did I think people would continue buying my bullshit excuses? Do I owe anyone an explanation? No. Not really. But these people care about me, they worry about me. How can it be fair to shut them out? My friends, my family, my kids…. maybe when I have to walk around using a walker, I will tell everyone. How realistic is that? Not very.

I have been on a rollercoaster of emotions since that night. I had to have a hard talk with myself. I didn’t even mention it to my husband. I had to force myself to come to terms with this. This is my life now; this is what I will be dealing with for the rest of my life. I can’t run from it; I can’t change it. But I can learn to live with it. I need to allow myself to process these emotions without shame, without feeling inadequate. I need to stop feeling tainted. I just feel like people won’t want me around if they know the truth.  A type of echoing, “Oh don’t invite her, you know she can’t handle the xy and z.” I don’t want that for myself. I don’t want to be “the girl with the disease.” I don’t want that as my descriptor. Will people think less of me? Will I become less valuable to those around me? Will they treat me different, view me differently than before? You all may be reading this and thinking, “all this agony over a pair of heels?1” No. Not heels. Agony over not being able to run with my children, agony over hearing one of them screaming upstairs and it taking me twice as long to get to them, agony over not knowing what my future holds, agony over no longer being me. Because it’s true; I am not the same. I will never be the same and I will always be dealing with this. But I can’t let it control me. I can’t hide behind lies and excuses for fear of being outcast. I can’t avoid activity and social interaction for fear of probing questions and uncomfortable silences. I need to own it. I am me and yes, I have a disease, but I am NOT a disease. It is not who I am, it is simply a circumstance. So, maybe I won’t fit into the picture. Maybe I will just have to be that friend in flats. But you know what?

This ain’t about no goddamned heels.

 

Until next time, keep smiling.

 

 

 photo signature_zpseve40n43.pngDigiprove sealCopyright protected by Digiprove © 2017

9 COMMENTS

  1. Carl D'Agostino | 7th Dec 17

    Work through it. You can’t chase your dreams in heels nor run from a hungry tiger.

    • rudymariee | 7th Dec 17

      This made me smile. Thanks Carl! ✨

  2. floweringink | 8th Dec 17

    My heart is breaking for you right now, because I get it, I really do. Although my disease is very different from yours, I have felt so much of the same things. I have wanted to “fit into the picture”. That phrase brought tears to my eyes because I understand that sometimes, for just a minute or an evening, you want to just be, without having to consider your illness. I get feeling angry that the decision isn’t yours. I have only been reading your blog for a few months, but I know from everything you write that you are strong and funny and full of fire; your illness can’t take any of that away. Writing this post was courageous, and I hope also somewhat liberating. Your soul and heart and the core of who you are can’t be changed by illness. I know you from your writing as an incredible and talented woman, and knowing about your illness doesn’t change that. You aren’t that woman with the illness, you are that incredibly talented writer whose blog I am super excited to have discovered.

    • rudymariee | 8th Dec 17

      This comment literally brought me tears to my eyes. I can’t tell you how much I appreciate it. I totally get all of the emotions; its so hard to come to terms with the fact that our lives are forever changed. Its hard to move away from the “it’s not fair” mentality. But I think only the strong willed are chosen to deal with battles like ours. What choice do we have but do persevere? Writing this was absolutely liberating and it made me feel so much better. You never really understand the weight of something that you’re holding in until you let it go. Now, I don’t have to worry so much. I truly appreciate your kind words and you are really an example of why I write!

  3. K E Garland | 8th Dec 17

    My dear, I do hope that writing this started a lifetime of acceptance. I also hope in time that people will not make excuses for you and just ask if you’ll be able to go, or maybe ask if there are some accommodations you need. But, you’ve already taken the first step, I think, which is to not be ashamed of who you are in this moment. Trust me,we all have something, others are just able to see yours 😉

    • rudymariee | 8th Dec 17

      I really feel like I am on the right path to acceptance now. I feel liberated and less like I am in the shadow of my illness. This is something that I really needed to do and I already feel better for it. You’re so right…everyone definitely has something. Thank you for your comment Kathy!!

  4. vickywillard | 10th Dec 17

    You are truly an inspiration and I am grateful that your blog is transparent and that you are able to share the most intimate parts of your life. I appreciate your blog in this post. Thank you!

    • rudymariee | 11th Dec 17

      Thanks so much Vicky! I really appreciate it! It makes me feel amazing that I am able to reach people through my writing. ❤️

  5. Roshonda N. Blackmon | 12th Dec 17

    Hey Girlfriend! I am so doggone proud of you right now, I mean I always have been …. your truths are vivid, transparent and courageous. I love you and you’re so right, you might have the disease but you are not the disease. I understand the emotions of not wanting to be an outcast especially if we reveal certain truths, but just think of what it does to us on the inside when we don’t. I know it was hard, but so glad that you had a strong talk with yourself and are beginning the process of moving forward. I have my pom poms and I’m in your cheering section, cheering you to VICTORY! Stay Strong and Keep your head up. Hey, I’ll take a picture in flats with you, because I can’t do those heels either…lol. And girl, you got to let me know where you got those leggings, because anything that can make this little padding sit up – is alright with me, I’ll probably never take them off…lol. Hope you’re having a Awesome Day!!

Leave A Comment

Leave a Reply