Bryan: WTF? You are not serious!
Me: ROFL. Of course not.
Bryan: Rolling my eyes. Just go and have fun. Mel and Luke will be there too.
This is about getting you out of the house and having fun again.
Me: Fine.
Bryan: You better go.
Me: I will. I don’t want to, but I promised and I will.
Bryan: Good.
Me: Yeah. Yeah. ;)
Bryan: Hey Em?
Me: What?
Bryan had never shortened my name before. Then again, I was the only person in the chat window with him, so he hardly ever used my name to begin with. I liked it. I loved the tingly feeling when he used my nickname.
Bryan: Nothing. Never mind.
Curious by nature, I pestered him.
Me: What? I’m an open book today. Better ask while you can.
It felt as if minutes ticked by, but it might’ve only been seconds. When I thought he wouldn’t type anything, he did, and his question shocked me. Out of anything he could have asked me, this had been the one I didn’t expect.
Bryan: What did it feel like when you got sick?
Me: Why? Are you having weird symptoms?
Bryan: No, curious. One day you were fine. The next…
Me: Pretty much how it happened.
I have asthma and went in for my normal checkup on a Friday morning. For the first time in a long time, everything went perfect. My stats were great. Doc was happy.
That night, I went out when some friends to a concert and drinks.
Saturday morning, I thought I had worn myself out and excused it as partying too much. I thought that’s why I felt so run down, and needed extra time to recoup.
Sunday I felt the same, and Monday I was tired, but I still went to work. I struggled the whole day though.
Tuesday, I couldn’t breathe. I went to the ER and they thought asthma.
I did too, except I got worse throughout the week. My regular doc couldn’t understand it, but he knew something was wrong. I saw him the day after the ER and the day after that. And finally, he put me on what we thought would be short–term disability until we figured out what was wrong with me.
A month later, I was diagnosed with myasthenia gravis. From that first day in the ER to the day I got the verdict, 36 days passed. The day I ended up in the ER, my life changed forever.
LOL. Ok, that sounds more ominous and dramatic than it really was.
Bryan: But going through it all, I’m sure it felt dramatic. Still does sometimes?
Me: It did, and it does.
Bryan: Tell me about you before you got sick.
Me: Me before?
Bryan: Yes.
I paused. Me before? It all seemed like a lifetime ago, and yet, only four years had come and gone. Before…during that time in my life, everything revolved around whatever I wanted it to, and I didn’t care about tomorrow as much as I did now. I never thought everything would change overnight, or that I would somehow lose a part of me.
Bryan: Hello?
My mind had wandered again, and I had left him sitting there without an answer for almost five minutes. My eyes roamed around my bedroom. They took in the walls, the pictures, the window, and finally landed on Curley who was curled up in between my slightly spread legs. Life had changed.
In my old apartment in Texas, the manager allowed me to paint the walls and I had covered my bedroom in a soft lilac. Pink may have been my favorite color, but I loved how the pastel purple glowed in the sunshine that shined through the big picture window. My bedroom in Charleston measured slightly smaller, and the walls were stark white. Management refused to allow me to paint them. Since I couldn’t paint, my sister came over one day and we covered the walls with pictures and framed posters. We didn’t cover everything, but at least the art contributed a pop of color. Something the apartment desperately needed.
Bryan: Em?
Me: Sorry about that. Dog had a potty emergency. And since I have to put him on a leash and walk outside, took me a sec. He was crying. LOL.
My cheeks turned pink as the lie rolled off my fingers. I squirmed in bed, afraid he could see me, knowing he could not.
Bryan: NP.
Me: I loved going to school and learning, but I also liked my job. I was probably a more carefree person after I got my Master’s up until I got sick.
Before I got my graduate degree, I worked my butt off so I could go to college, but I told you that whole story.
I loved playing tennis, hanging out with my friends, singing karaoke or whatever. I traveled as much as I could, watched a lot of sports (still a sports fanatic), probably drank more than I should, and did whatever the hell I wanted to at the time.
I hate to admit it, but I didn’t spend as much time with my grandparents as I probably should have. My grandfather is gone now, but my grandmother still lives in Texas right outside of Houston with a horrible relative.
I always told myself I’d have tomorrow to visit. To do things. I didn’t. I used to run, skydive, and ice skate. Not anymore.
Bryan: You’re from Texas, right?
Me: Yep, but not born there. I was actually born in Maryland. My dad was in the Navy and is now retired. When he retired we ended up in Texas, and after I got sick, my family decided I needed to be closer to someone so that I had help.
Bryan: Where are your parents?
Me: Oklahoma. They both travel for work, which is why I don’t live closer to them.
I think my mom would help take care of my gma if gma didn’t want to stay in Texas so bad, and if mom didn’t travel as much as she does.
Bryan: And that’s where your horrible relative comes in?
Me: Yep. She’s a first rate BITCH.
Bryan: Wow. All caps.
Me: All caps. And if I could bold and underline it, I would.
Bryan: Must be pretty bad.
Me: She is. She treats grandma like she’s an invalid and tried to forbid her from driving. Then she tells everyone that gma is senile, which she isn’t. My gma is probably sharper mentally than you or me. Still sharp as a tack. On top of that, the bitch goes behind gma’s back and makes decisions for her, takes her money, and has tried putting her in a home multiple times. Relative always loses.
Bryan: Why not just let her live alone.
Me: Gma isn’t a spring chicken any more. Her words not mine.
She has some health issues, so she stays with my aunt and uncle. It’s more for just in case, but aunt seems to think she is in charge and my grandma’s boss. Her husband is just as bad.
They said something on FaceSpace and I called them out for it. They didn’t like that, and the next morning I found myself blocked and unfriended. So needless to say, I’m on their blacklist. LOL.
Bryan: You don’t sound too upset about the unfriending.
Me: I’m not. They have tried to play the victim card most of my life and I’m done with them. I care about my gma, but not them. Does that make me sound heartless?
Bryan: Not at all.
Me: Good. LOL.
Bryan: Family can suck sometimes.
Me: It can.
Bryan: You’re a strong woman.
My cheeks burned from the compliment. Reading those words, felt like a caress to my heart and soul.
Me: Thanks, but I don’t think I am.
Bryan: You’ve learned to cope and live w your disease.
Me: It’s either that or die. It’s not my time.
That was my philosophy in a nutshell. I could choose to not take the numerous medicines that managed all of the illnesses and effects, but if I did that, I wouldn’t make it. I could live with a defeatist attitude, and if I did that, I would be miserable, depressed, and more dependent on people than I was now. I had always been independent, thus depending on someone fulltime terrified me. I hated depending on my sister for little things as it was.
The life expectancy of a person with MG was supposedly normal, but they also told patients that they coul
dn’t die from MG. I had seen the opposite to be true. In my support groups, children and adults died from the effects of MG. They would attribute the death to the lungs, heart, or anything else, but it came down to MG in the end. As with other autoimmune diseases, our bodies could not fight infection as well as a “normal” person, because our bodies were already attacking themselves. A simple cold could put us in the hospital. We had to always be careful and mindful of the people around us.
With the cards stacked against me, I had to fight for myself, my family, and my friends. I could mope, and I sometimes gave into my depression. However, if I didn’t fight, if I didn’t try to stay positive and continue to live an independent life, I would wither away. I believed wholeheartedly that attitude was half the battle.
Bryan: You could still live without really living.
He understood. He got it. I could live without living, but what kind of life would that be? Empty.
Me: I thought that’s why you were helping me, because I’m not really living.
Bryan: You do, except in the love dept.
You don’t like to complain about what you deal with. I basically have to pry it out of you. I also like how you try to remain positive.
That’s some of the stuff I’ve learned about you.
The blush that had started to diminish, intensified once again. I fanned myself suddenly feeling very hot.
Me: Thanks. It’s either adapt or else. I feel depressed and I let it get to me a lot, but I also know that it could always be worse. I’m still alive and can get out of bed most days. Sometimes I’m bedbound because I’m too weak to get up. I can still breathe, see, walk, learn, and drive…for the most part.
I can really only drive short distances now. I get too tired and my eyes start seeing double even with special prisms in my glasses to correct the double vision. I mean I see double all of the time without my glasses, so they do help.
Walking can be touch and go. LOL. I take it all one day at a time. I think a lot of people who get a chronic illness have to shift their mentality in order to stay positive.
Bryan: Not everyone succeeds.
Me: Maybe.
I didn’t want to think about those people who gave up without a fight, who were unable to alter their mentality to match their new situation. I had seen it happen to newly diagnosed patients in the support groups. They joined for answers, for a cure, only to leave disappointed. There have been cases where people with MG went into remission, but that usually only lasted a couple of years. MG was a bitch of a disease to have, and there were few strides made to find something to help the patients suffering from it. To some, it was a death sentence. To others, it was a wakeup call.
Bryan: Were you mad?
That sounded like a stupid question to me, but then again, he hadn’t had his life turned upside down. Therefore, he didn’t know. I answered as honestly as possible, still a little shocked that he continued with this particular line of questioning.
Me: Yes. I wanted to be mad at God, my parents, the world…anything and everything. Why the fuck did this have to happen to me? I hated that I couldn’t do all the things I used to be able to do with such ease. I wanted my old life back. I felt robbed. My sister has nothing wrong with her, but I won the lotto and got a fucked up disease. Where’s the fairness in that?
Bryan: And now?
Me: I still get angry, but it’s more at myself than anything. And I wouldn’t wish this on my worst enemy. Sometimes I wish they could have a small taste though. My parents and the people around me had no control over me getting sick. I just got sick one day. No one could have predicted it.
As for God, I figure He knows better than me. My life has completely changed, but at the same time, doors have opened for me that wouldn’t have been able to explore before I got sick. I’ve met great people and made new friends. In some ways, it brought my family closer together. I’ve learned more about myself in the last four years than in the 25 prior to that, and I’ve learned to appreciate the life I used to take for granted.
Bryan: Now if we could only get you to apply that attitude to your love life.
Me: LOL. I’m trying.
Bryan: I know, baby.
You said one time that you lost friends because you got sick?
UGH! That “baby.” My insides quivered reading it, and might have wished he sat beside me instead of on the other side of the country.
Me: I did. They didn’t…appreciate the fact that I couldn’t do everything I used to do, and got mad about it all. My life now is a lot of day to day. I make plans, but I might have to cancel last minute if I’m having a bad day. You’d probably be surprised at how many people don’t like that.
Some say they can accept it, but then you notice that the number of invitations has suddenly decreased. Then there are those that aren’t quite sure how to act or what to say around someone like me. I don’t look sick, but then I use a cane or a walker. The term ‘walking on eggshells’ comes to mind.
Bryan: Do they ask about it?
Me: Some do. Most don’t. And when I’m out amongst the population, people stare and give me funny looks. Some look offended by my presence. My sister gets pissed off at them and grumbles that I can’t help that I have to use a walker at a young age. Some look curious, but are too afraid to ask. Different is not always good.
Bryan: Does it bother you?
Me: It used to. I guess sometimes it still does. It’s awkward more than anything. I’m 29 and use a walker like an old person. Here they see someone young using something like that and it stumps them. My sister wants to confront them all for me. She gets mad on my behalf.
There have been funny moments too. One time I went to the store to pick up some medicine. I had to go in because I needed milk. I pulled into a handicap parking space, and before I could get out of my car, an old man started yelling at me and told me to stop using my grandparents’ placard. He said young punks like me were what was wrong with the world today. LOL. I had a good laugh about that one.
Bryan: Did you tell him off?
Me: Nah. I let my walker do the talking. I got out of the car, shuffled to the back, and carefully pulled out my walker. His mouth snapped shut, he huffed, and then walked away as quickly as he could. I never said a word. Haha.
Bryan: What do you miss the most?
Me: Freedom.
Bryan: Huh?
Me: Freedom to do whatever I want, whenever I want. To not have to worry how I feel from day to day and I can make plans without fearing what will happen. Freedom from using a cane or walker. From having to depend on people. Freedom.
Tears streamed down my face as I admitted the one thing I still craved, the one thing I missed above all else. In some ways, my disease had made me a prisoner and had stolen my freedom.
Bryan: I’m sorry.
I loathed it with every fiber of my being when people told me they were sorry. What were they sorry about? Did they do this to me? No. I had won the genetic lottery, which unless they were a mastermind to an evil plot, they had no control over who the disease affected. There was no reason for them to feel sorry for what happened to me, and I sure as hell didn’t want their pity or for them to feel sorry for me personally.
Me: Don’t be. Not your fault.
Bryan: Still am.
The tears fell faster and blurred my vision, signaling an end to my conversation.
Me: I’ve gtg. Bye.
Bryan: K. Bye.
Shutting my laptop, my face scrunched up in an ugly frown, I allowed myself to cry. With my body wracked with gut–wrenching sobs, I grabbed my pillow and screamed, holding it tightly to my chest. Curley woke up and tried to console me, but all he could do was lick my arm. I needed to release my pain. Tonight, as I had done many times before, I mourned for everything I’d lost since myasthenia gravis swept into my life and turned it upside down.
Chapter 19
Emma
Blinking my eyes open, I slowly surveyed the room, noticing how bright everyth
ing appeared. Morning had come without me knowing. I grabbed my muscle pill, mestinon, and took it with a sip of water and lay there in my bed hugging my pillow for a little longer.
My eyes were crusty with dried tears, my mouth tasted like cotton had grown inside it, and my head was pounding as if someone had used it for target practice with a sledgehammer. All in all, I felt like crap thanks to my conversation with Bryan. Not that it was his fault.
The first counselor I saw shortly after getting my diagnosis, told me that grieving the life I lost was a normal process. Loss hurt. She informed me that I would go through the various stages of grief, and in doing so, it would help me to heal and cope, but she also warned me that I would undoubtedly go through the various stages multiple times throughout my life’s new journey. And I had. Sometimes I even volleyed back and forth between a couple of different stages. Every time I thought I reached the end of the stages, something happened, and I cycled through the stages again.
I accepted that my life would never be the same. I knew everything changed the day I went to the ER; however, that did not mean I accepted everything so easily. People who had lost a loved one could accept that they would never return, but they still mourned that loss. Becoming sick held a similar loss to me. Like my counselor said, loss was loss no matter what it was.
When I felt my medicine kicking in, I opened my eyes again and stared at nothing in particular. I needed to move, and yet, I had no motivation to leave my bed for any reason. I especially didn’t feel like attending the party. I didn’t care about my promise to Bryan. How would he know?
Exposed: Book One of The Love Seekers Series Page 15