Life Experiences Part 1: Life Isn’t Always What it Seems
This is going to be a long article. But, I feel it’s important that I be vulnerable and share my story. I’m not sure why, but I hope it can help someone else who may have once walked in the same shoes. So without further or do, here is Part 1:
I feel like in the majority of my articles thus far I may come off as overly positive or sometimes even too positive about my life with MS. But, I want to be honest and tell you all that wasn’t and certainly isn’t always the case. My positivity has been learned. It was learned after tragedy and triumph. It was learned over years of being unable to face neither my past nor diagnosis… and have no sympathy or pity for others in the same shoes.
Darkness and confusion
For years I was extremely negative. I was a miserable human being. I didn’t want to face my reality and so I lived my life not caring how I took care of myself and sadly not giving a second thought to those around me. I didn’t care about my own well-being, so back then I certainly didn’t have the capacity to care about anyone else either. In my eyes at that time, I was going to do what I wanted and the consequences of what I was doing to hurt myself and others wasn’t even an issue in my mind. Mind you, this was all happening when I was around twenty years old, thus being approximately 5 years from my actual diagnosis. From previous articles you probably know I was diagnosed at 14. Around a year after the initial diagnosis I was ultimately taken advantage of by an older boyfriend that I thought “loved me”, sinking me further into a pit of darkness and confusion. And, for some reason around that 5 year mark after those two big hits in my life is when the reality of it all slapped me in the face. I drank in excess, I smoked cigarettes like they were going out of style and I experimented with other things. I didn’t take my medication as directed (back then I was on Copaxone and the last thing on my mind was giving myself an injection), and I often abused other medication just to feel something. I didn’t want to feel the reality of what my life with MS could be like, or feel the honesty of what had happened to me, so instead I wanted to do everything in my power to feel anything but that.
A desire to be normal
I felt invincible, because at that time nothing in my mind could make me any worse off than I already was. I wanted to be numb to the world around me, to escape my responsibilities and escape life in general. I wouldn’t say I was suicidal, but I held the thought that if something did happen it couldn’t be any worse than living with MS or knowing I had tragically lost my innocence for the rest of my life. In that time I pushed everyone who truly cared about me away, and I clung to those who enjoyed the numbing lifestyle I had become accustomed to. I even began denying and questioning my faith which has been important to me since before I can remember. I yearned for freedom to live my life as I pleased, to do everything I hadn’t been able to do growing up in a more conservative household. I wanted to be wild and live in reckless abandon. I wanted to do everything vaguely possible to distract me from the fact that I wasn’t “normal” compared to everyone else around me. I didn’t feel sick, (plus I was in utter denial of the other life altering situation) and I certainly wasn’t going to act like it or let anyone in on my dirty little secrets.
I’m approaching my 27th year of life and it’s been almost 13 years since I was told I had Multiple Sclerosis. It’s been almost 12 since I was taken advantage of. I look back now on that mere year and a half of life (5 years after diagnosis and the likes where it all hit me), where I allowed negativity and denial take control and it seems like I was in that stage for at least 5 years. You know how when you go through situations in your life and time seems to stand still? This was one of those. And, I think I feel that way, about my negativity seeming to last much longer than it did, because I have no idea who that girl was back then. That girl felt worthless. She felt like she was the bane of her parent’s existence and a huge failure of the daughter they had once imagined. She had let some slimy boy steal her innocence and now she had an incurable disease, what good could she be to anyone?
While my life and mindset have changed dramatically from that girl in her 20’s struggling with the reality of pain and hardships thrown her way, I do still struggle with negativity indefinitely. I come from a long line of worrier’s, you see. My grandmother worries, my mom worries, and so as fate would have it, I am a worrier as well. And with an MS diagnosis you find you have plenty to worry about. I worried for the longest time I would never find someone to love me. That I was unworthy of someone’s love after I had my incident with that boyfriend and also had a life full of doctor’s appointments and unpredictable symptoms. I worried that I would never be able to face MS head on and let others know without fear and angst of condemnation that I did have MS. I worried that my family and close friends would never forgive me for going off the deep end and living a life I was less than proud of. And, while all those worries have proven untrue, I still allow worry to get the best of me at times. As I grow older I’m thankful that I’m able to see my past as just that-the past. It doesn’t define me anymore. It’s helped build me into who I am today and helped guide me through other hard trials. As I grow older I’m also thankful that my MS seems to be stable as of now, but that doesn’t mean I don’t worry or become a pessimist about it. I do notice new and varying symptoms that I haven’t dealt with before and that’s scary to me. I notice new pains here and there and I’ve noticed that the last couple of years have been harder on me physically than many of my younger years. It’s not as easy to jump back up and recover as it once was. And, with all of those worries, of course, comes fear. Fear of the future. Fear of the “what if’s”. Fear of how my body might betray me. I’m not going to lie to you (I’ve been completely honest so far), a lot of times when I think of the future I am plain scared of what could happen. I don’t want my life to change from where it is now, because I worked so gosh darn hard to get here.
I still feel lucky
If you’ve kept up with my journey thus far through past articles, then you know that while my initial diagnosis was incredibly difficult for me-a complete and utter shock to my system-for the past 12 years I don’t consider my MS to have affected my life in any detrimental ways. Physically at least. Emotionally, is a different story, but that is an entire article’s worth of information in itself. However, when it does come to my emotional health these days, fear and worry are my largest demons. When I think that severe fatigue as well as temporary pains here and there has been the worst of my struggles thus far, I deem myself lucky. Blessed. Even the worries and fear that sometimes negate my life can’t take that away from me.
Focus on healing
I try desperately not to live in fear. I feel that’s why I try desperately to remain as positive as possible. If I focus on the good, then I don’t have time to worry about the bad. But, that fear is a constant…always lurking in the back of my mind. If I let my guard down, it’s there to remind me of the negative aspects that could be down the road. So, let’s just say, I don’t let my guard down often. I honestly can’t handle dealing with that intense fear on a daily basis. Some days when I let it slip through the cracks I feel as if the fear alone is enough to swallow me whole. Yes, I do my best to overall be realistic about my future and what could happen. I know that my future isn’t certain and any day could bring on something new and permanent. I’m not naïve in that sense. While I know my MS diagnosis isn’t a death sentence per say, it is most certainly life-altering. It has already caused me to waste years of my earlier life in negativity and denial and truth be told, I’m not ready for the anxiety of the “what ifs” to spill over into everything I do.
So, every day, I continue to allow myself to heal a little bit more. I’ve healed more than I ever thought possible since this all began, but every day brings back new emotions, so it’s still a work in progress. And, with that I will leave you to wait Life Experiences Part 2: The Importance of Allowing Yourself to Heal.