The Ride

What is it about life? How it hands you all these twists and turns and makes you feel like you’re riding a roller coaster and you’re unable to get off. The more you try to get off, the faster the twists and turns come at you. You feel like it will never end. I mean, will it end?

Is there a way to get off? Or to at least have the twists and turns slow down so you can catch your breath. Catch your breath and have some joy in your life because it’s not a fun ride on this roller coaster. It takes all your strength to not cry and to steel yourself to continue on this ride that is beyond your control.

You put on an act so no one knows what you are really feeling. So they can’t see your pain. You’re screaming and no one is hearing you. So you continue to ride and hope it will stop.

“Follow your dream no matter what.” – Jared Leto

This quote has been bothering me for some time. I mean, how can you follow your dreams when you’re stuck on this roller coaster called lupus? Do I just stop dreaming? Do my dreams have to change now? Does my life need to continue to be on hold while I grow older and battle this disease? Is there a way to still be able to follow my dreams?

While I’m on this roller coaster others are continuing to live. I’m falling behind, far behind and in order to catch up I need to get off this roller coaster, but every time I see an exit the door is slammed in my face and the ride begins again.

Round and round I go. This medication to treat this and that medication to treat that. Countless doctor’s appointments and needle pokes. The pharmacists, lab technicians and receptionists know me by name. They’re friendly faces amongst the other riders of this roller coaster. Those riders get to leave. I try to follow but cannot undo my seatbelt.

Everything has a cost. This horrible ride is not free. Each medication has its own consequence and these consequences are further hills and valleys on the roller coaster. I feel that people are starting to hold these against me. I feel life is one giant side-effect and the twists and turns of these side-effects make me sick.

It’s not just the side-effects. It’s the toxicity of the pretty pills they supply me with. This is just another curve in the tracks. To treat the disease I need to take medications that kill other things in my body. Other things go wacky just like this wacky ride but these things are considered minor compared with the other option, falling off the tracks at full speed.

Continuing to ride I notice people looking at me differently. Hell, I look at myself differently. Some parts of me I don’t even want to look at at all. The ride has changed me again and it’s not what I wanted or expected and it’s put a damper on any sex life I thought I’d ever have again. The roller coaster speeds up and I’m on it alone once again on a Friday night.

I’m riding this ride that no one can understand. They try to, but can never fully join me on this crazy ride. Friends pop in and out of my life. They can’t handle the ride. The thought of staying on this ride forever makes them stay away, distant and unable to communicate with me.

People are lost; those that can’t handle my illness. My heart is broken by a man that said he loves me. The ride was too much for him. I wonder if I’ll ever find love again.  I have lost the feeling of my heart in my stomach that happens when you go down a hill permanently to protect myself from being hurt again.

I have begun to wonder if the disease or the roller coaster ride are making me sick. Continuing to battle becomes hard. Looking for a way off consumes me. Trying everything until I just throw my hands up in the air and surrender to the ride believing it will never end.

Falling in to the deepest dip in the tracks I feel like I cannot go on. Laying down in the roller coaster car is all that is possible. Tears are running down my cheeks and I cannot do anything to stop them. There’s nothing good or happy in my life. I wonder where I can find the strength to go on because this ride is happening whether I want to take it or not. The fact that I have no choice is killing me.

This ride has also hurt me financially. I think back to the days when I had a career and made money that supported me and my children. I end up on a ride within a ride when dealing with social security. Applying and getting SSDI has many twists and turns and low dips. I’m on the ride with SSDI for a year. While fighting this battle I have lost other battles and my house and have to deal with a low dip and turn and move into my parents’ basement. The pain from this is so great that I feel I will never recover. It adds to my loneliness because who wants someone that lives with their parents.

Dreams…. How can I even have dreams anymore? This ride has taken them away. It’s not like I haven’t dealt with this before. I guess that I was never strong enough to follow them anyhow. Starting at 18 is one thing, starting at 42 and on this ride called lupus is another.

Dreams… The ride goes on as I focus on the past. It was all about making everyone happy; doing what was right. There was no encouragement to do what I really wanted, not that that’s a valid excuse.

“Follow your dreams no matter what.” Did he consider people that are ill and their dreams have changed. No not changed. They still have those dreams but are now on a different roller coaster and on this coaster they are fighting for their life, yet they still have those dreams and feel that these dreams are now unobtainable and the more they think about it the more angry they become. The roller coaster takes another turn.

I feel worthless, useless, and ugly. It feels that the more I fight to get off this ride the more it sucks me in and won’t let me go. I wonder why bad things always happen to good people. It’s true. Bad people get away with everything while good people get sick, are hurt or killed. The feeling to punch something comes over me. Or maybe scream, but I wonder if anyone can hear me as I speed by on this roller coaster.

Dreams… You always have them, you always want them, you strive to reach them, you stumble on the way to reaching them, but you get up and try again. Riding this roller coaster has taken its toll. Hearing people talk about their dreams and how they can reach them kills me. All I can say about my dreams is that I took the pretty blue and pink pill that is toxic.

The ride goes on and on. I’m still trying to escape but can never get the operator to stop at the station. It’s a great big circle going round and round, never ending, always running. Explaining my illness to someone else is hard. It’s not cancer but is treated with chemo, I didn’t contract malaria but I’m taking medication to treat that. I try to tell them what these do to my cells in my body. They are kind and pretend to understand but I know they don’t and they never will. I begin another lap on the track of the roller coaster.

Dreams…  I see other people talk about how this quote inspired them to chase their dreams and I wonder what kind of roller coaster they are on; what kind of twist and turns they’ve had and how they have overcome them. I wonder if they’ve had something such as illness permanently change course with no choice but to ride that ride and never get off.

I sit here and wonder if this ride will ever end. I want to get off and follow my dreams, but am frozen in place in the car on the roller coaster with one hand on the buckle hoping it will unbuckle and let me go. I wonder where I can/will go.  Is it possible to dream of anything other than being healthy?

Can I dream of finding love again? Are dreams of a career,, not just a job possible? Can I make a difference and raise awareness about a disease that affects millions, but no one knows about? Will there ever be medications developed to specifically treat lupus, not like it is now where there is one?

Dreams… The roller coaster speeds up and I feel like I need to vomit. I’m just going in circles, not moving forward on this ride. How can you reach your dreams when you’re really going nowhere? I’m stuck in a spiral of thoughts. Trying to figure out what to do next.

Can my dreams come true? Will this ever end? Does anyone care?

I begin to dream again and hold on to the thought that I’ll be able to get up from this fall and rise again stronger.