The Unknown


Here I sit, at 29 years old ( I know.. I know.. I’m still young), wondering why I can’t figure anything out in life. I don’t think I’m alone. I’m starting to think that this may be an impossible task. How can you ever have life figured out? How can you ever have yourself figured out? Maybe the answer is… that you can’t!

These are questions I am always asking myself. People are changing every day. Most of the time you are changing without even noticing. All of a sudden, a year has flown by and you are nothing like you were the year before. You could have grown for the better, or, maybe you’re not doing so great. Who cares! Your situation will never stay the same.

I am not one to trust any type of relationship to last forever without pain, let downs, boredom, or drifting apart. This can be romantic relationships,  friendships, family, etc…I have grown apart from people I thought I could not live without.

I’ve been hurt by every single person I have ever trusted.

Maybe that is just life.

We are all human.

I do it to other people too. Are people supposed to be like this? Because it seems like we all are the same in a sense. Some people try to be a saint while others enjoy being the devil. Either way, we all lie, don’t say things that we should, say things that we shouldn’t, are confused, think we know what we want, and we all strive to be our version of happy.

You build your own life and start moving in a different direction. You get married and settle down, you lose your friends and make new ones, you raise your kids and lose focus of everyone else on the planet. Most people get divorced and start over again. Changing all over again, over and over. These changes within you, and within the people around you are constant. Every day you go on with your life without noticing how you are changing into someone else.

Some people learn from their experiences and become more humble, while others are terrified of the world and become bitter. Everyone takes a different path. You travel your path with expectations that you can never fully control. You have no idea what your life will bring.

I always wondered what my “purpose” is going to be. Maybe it is to help others and work my life away. Maybe it’s to raise a family. Maybe…it’s nothing at all. That is the scariest, yet the most beautiful part of life. We don’t know anything…and that’s okay.

Why do we feel the need to know what our future holds? Why can’t we just let things fall into place instead of trying to control everything? I am exhausted from trying to control my entire world.

I do not believe that everyone has a soul mate. I do not believe that everything happens for a reason. I do not believe that everyone comes into your life for a reason. I believe that things just happen, and we are just people who make a bunch of mistakes. We are people who never stay the same.

Love will come and love will go. Friendships will be made and destroyed. Happiness will come and so will pain. Life can be simple; it’s only complicated because we make it that way.

Maybe I should just go with the flow and see what happens. I try to manipulate my life and it never works out. It’s like I have control, but I don’t. I don’t think a person can be truly happy while trying to control every aspect of their life.

I don’t know what I am doing. I don’t know who I will be in the next year, 5 years, or 10 years. I do know I won’t be the person writing this today. Who knows if I’ll be married, single, kids, no kids, working my life away, jobless. It’s all unknown. And I’m okay with that. Accepting the unknown might just be my key to happiness.

 

Meghan Farr
Meghan has an Associates Degree in Human Services, Bachelor's in Human Development and Family Studies, and a Minor in Psychology.

You Look Good But Looks Can Be Deceiving

I wish I had a nickel for every time someone said ‘you look good’ when I was in pain, fatigued and feeling broken.

I like to use to an iceberg as an analogy for what my lupus looks like. Most people only view the tip of the iceberg but there is more than imagined below the surface. The iceberg analogy can be applicable in describing many different illnesses, such as depression. They may look ok on the outside but hopeless on the inside. It’s difficult for people to understand that you’re experiencing health difficulties when you look normal or ok. It’s not like a broken leg with a cast or walking with crutches/cane/walker or using a wheelchair where everyone can see the disability.

My rant begins with an experience I had recently when using my handicap placard. While walking into Jewel to pick up my prescription, I had an older woman approach me who proceeded to inform me that I parked in a handicap space and should be ashamed of myself for taking that space away from someone who ‘really needed it’. At first, I was dumbfounded by her gall but recovered enough to say I have Lupus. She continued to appear agitated with me so I said do you know what that is? A little less annoyed, she said no. I openly admit that I was frustrated and felt like telling her to kiss my @ss but attempted to explain that she had no idea what health issues I was dealing with and tried explaining that I have a heart condition and pain with swelling in my ankle and hip joints. The woman rolled her eyes and walked away before I could tell her that looks can be deceiving. I was raised old school and wouldn’t be disrespectful even though she was disrespectful and rude to me but I would have liked to tell her to mind her own damn business!

There are many disabilities that are not obvious and we should not be so quick to judge! As for my lupus, sometimes I actually have a limp when my ankle, knee and hip joints inflame but most of the time my symptoms are relatively invisible to the untrained eye. There are times that are obvious and others a mere rash on my face or redness revealing the butterfly rash. At times, when I get palpitations I stop, sit or lay down until the episode passes but it can last for hours at a time. I always carry my medicine with me to relieve some symptoms however it can take at 30 minutes for it to work. With my joint pain, sometimes it’s difficult to hold a full glass or cup in my hand or simply button a shirt because of my swollen, painful joints. I cannot lift a gallon of milk due to my joint inflammation! The fevers and fatigue take me down to where I’m confined at home and sometimes to bed. If my hip or knee is painful, sitting, standing and walking takes more effort and I compensate to get around and use a cane also I avoid the stairs. I keep a pull-out couch on my first floor when it’s too difficult to climb stairs due to fatigue or pain. Some days I can paste a smile on my face and fake it while other days I feel ok enough to enjoy activities and other days I’m unable to leave the house.

It’s hard to explain exactly how much having Lupus effects living a ‘normal’ life. I never know when or where that traveling circus of inflammation is going to put down stakes – that means I don’t know how bad the inflammation will be because it can vary from day to day. It’s difficult to make plans since I don’t know how or what will be affecting me most on any given day.

Life, in general, can be unpredictable for everyone.

For me, life is extremely unpredictable every day. I can wake up feeling ‘good enough’ but by noon experience palpitations with a heart rate of 120 at rest without any apparent reason which leaves me feeling fatigued for the rest of the day. Or run a low-grade fever preceded by body aches and chills. Or be up every hour during the night with palpitations or joint pain. Therefore, I try not to commit to activities by keeping everything tentative. When I do give my time to someone or something it’s truly giving a piece of me. It takes genuine effort to get to an activity and be social. True friends and family have realized what it means when I attend functions and don’t take it for granted.

Along with unpredictability, the loss of control is one of the hardest things to deal with. I’ve learned over the years to compensate so I can enjoy life to the best of my ability. On bad days, I rest with only bare necessity activities, on good days participate in minimal activities but get to socialize! Every day I try to anticipate by planning out my day and spacing activities with rest periods in between. I’ve learned to accept when my mind says go go go but my body says no no no!

Living with Lupus has its limitations but it doesn’t make me useless! Yes, some days are more challenging than others but I’m still me, caring, kind, considerate and helpful. I like to think of the classic movie “It’s A Wonderful Life”. If you’re not familiar with it, check it out. It’s about how one person touched the lives of many others without really knowing it. I may not be able to climb a mountain or run a marathon but I can be supportive of those around me and be a good listener. I am a devoted mother, sister, and friend. I can still make a difference in other people’s lives. I try to find the goodness in others as well as myself. Personally, I try not to compare my before lupus life to life after my lupus diagnosis but I think I’ve become a better person over the years, definitely more compassionate, appreciative and in tune to my surroundings.

A little self-awareness goes a long way. With self-awareness, we become better humans, better people. We need to find compassion and acceptance, to accept others for who they are. Life is about acceptance and so is Lupus. It has taken me many years to come to terms with who I am with lupus vs. the life I lived before my diagnosis. Every day I choose to be a survivor, NOT a victim. A life with Lupus is better than no life at all. Right? What’s the alternative… A dirt nap!

I start every day by saying The Serenity Prayer authored by the American theologian Reinhold Niebuhr(1892–1971).
God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.

Michele Palermo
Michele is a retired registered nurse who spent 15 years in Emergency Medicine. That's where she learned there's a fragility to life. Diagnosed with lupus after going through a divorce has taught her to be a survivor instead of a victim. With her career shortened by illness she turned to books. She fell in love with the written word as a young child. To her, words convey emotion. Her new passion is writing. As an aspiring author, she hopes to inspire others on this roller coaster called life.

Accept Yourself For Who You Are

Most people who know me are well aware of my childhood. By the age of 14, I learned how to take care of myself and my 10-year-old sister. All of the adults in my life were substance abusers and I had no choice but to figure it out for myself.

I’d say it was a sad sob story, but it turned me into someone that could never be destroyed, someone who worked hard, and someone who was admired. Things that would traumatize other people couldn’t touch me. I learned that I didn’t need anyone to survive, and no one was going to take that from me.

As I’m getting older my personality is changing from a bitter bitch to someone who cares too much. When I was young, my mother told me that tears were for the weak. You don’t cry, and if you did.. it better be in the shower or into your pillow.

Over the last few months, I have been breaking down barriers. It happened so fast and all of my emotions were just out there in the open for everyone to see. That should be great right? Wrong! I felt weak. I felt like every wall I built, everything I have done to protect myself was going out the window.

I immediately hit the panic button and I ran so fast it was like a blur. I am fully aware that I am thinking in an unhealthy way. I am aware of the person that I am striving to be, and that I am doing the opposite of what I say I want. I am aware that I am stopping myself from moving forward.

I am able to admit that I will push anything away that makes me feel emotionally uncomfortable. I have been going to some extreme measures to try to figure out why I act or think this way. I have tried to explain my way of thinking, but it has been difficult for people to understand me. I have put all of my thoughts and emotions out there, and each time I am criticized and never understood. So why say anything at all?!

I thought I was able to overcome this, but I am not ready right now. I know that this won’t work for me forever, but I can’t seem to fight it. I am so strong, but I am so weak.

I try to cut anything out that might make me feel weak, which in return makes me weak. I battle myself every day. Feeling so many emotions gives me anxiety. I destroy myself with no way out. I numb myself to everything and it is the safest feeling in the world.

I am able to envision the person I want to be. I have experienced the thoughts that make me happy, and that is my motivation to work on changing my entire mindset. Instead of putting a knife into myself every day trying to understand myself, I need to accept that I am who I am.

The positive that has come out of this entire situation, is that I am being honest with myself. I can be honest in saying that I don’t know where to start and that I am uncomfortable with change. This is the first time that I have been able to acknowledge that my actions are on purpose. Maybe this is where I start in order to change.

Overall, I make my own choices and I am responsible for myself and my actions. Taking responsibility doesn’t free me from my thoughts, but it shows me that I have the power to make changes when I’m ready.

 

 

 

 

Meghan Farr
Meghan has an Associates Degree in Human Services, Bachelor's in Human Development and Family Studies, and a Minor in Psychology.

Our Obsession With Labels: Why Is It So Backwards?

It’s almost the end of 2017 and here we are fuming over labels. You know, back in the early 90’s  when we spoke about labels it was all about the hottest fashion trends. The world’s most sought out fashion designer, Gianni Versace was taking the world by storm turning the most unfashionable people like Courtney Love into an overnight sensation by simply wearing one of his designs. Now, when we speak of labels I feel like we’re turning people into mannequins where we either can praise them, insult them, or ignore them.

We are a society that once upon a time ignored the sticks and stones thrown us. Now we’re picking them up fighting with them simply because we feel justified. And if we’re right then the other side is automatically wrong, and zeroing on them simply because they can. From changing the symbol of the handicapped parking sign simply because someone thought it implied that the entire disability was being represented wrong, to using the word inspirational, and to most recently not using the term special education.

My question is, why is so backward?  Why are we more concerned with titles, and what signs represent or don’t represent us? In my opinion, we have consciously swapped out general descriptive words and used them as labels simply because it’s easier to assume about someone rather than learn from someone. My personal options about labels are simply this labels only affect you if you let them stop you. I also strongly believe that the only labels we should answer or listen to are the ones we’re putting upon ourselves.

Labels, in my opinion, have gone from being simple descriptive words in describing something or someone to shields we hide behind simply because we don’t want to go to battle with what challenges us. I say, go toe-to-toe with life. There are will be many battles in your life, and on occasion, some of those very battles will turn into wars of survival. Labels can only affect you if you let them stop you.

Your labels don’t stick with me they become like air. They may touch me briefly, but they don’t stick to me. They don’t quell my desire to overcome, instead, they fuel me. So sound your horns of injustice. I am going to continue to look forward.

Jessica Niziolek
Jessica is the founder of and writes for The Abler - a blog that deals with topics with far too much stigma, and not enough education or knowledge. She is an advocate for the disability community. Jessica is also a contributing writer for MEDIUM.COM. Lastly, she is a coffee and chocolate junkie who loves heavy metal and rock music.

More Weight

Imagine a warm, New England day.

You can hear the murmurs of the crowd surrounding you, but it’s hard to see around the door placed flat, horizontally over your prone form. You can’t believe it’s come to this. You’re not in a compact with Lucifer and you’re not going to rat out your friends to save yourself,so here you are, and here’s another stone placed on the door to crush the breath from your body. What will give away first; your determined will, or your lungs?

In 1692, during the heat of the Salem Witch trials, a man named Giles Corey was pressed to death for refusing to plead guilty or not guilty to witchcraft. His accusers kept asking him again and again, “Will you plead yea or nay to the charges?” His final answer – “More Weight,” wound up being his last words. With those words, he kept his family’s land and legacy intact instead of being put up for public auction. I love that his dying breath was just a huge verbal middle finger to the people who were trying to squash a confession out of him. They pressed the life out of him, but not his passion.

The words are tattooed on my right shoulder blade. I got it last summer as a belated birthday present to myself. It’s a permanent reminder that no matter what life throws my way, I have it in me to handle it – and more.

I’ve taught The Crucible by Arthur Miller in my junior American Literature classes for years. When we first start the story the kids are prepared to be bored but their curiosity is piqued when they hear the words Salem and witches. As we read the story the kids get more and more into the intrigue involved with the events leading up to the hangings. They pick sides and stand their ground when questioned. And they laugh at me because I get really fired up about it.

I love teaching it because of how timely the lessons still are from the events. They can’t believe that many of the events in the story actually happened, and continue to happen even to this day. The kids completely relate to the girls bullying, the adult’s nosiness, and the clergy’s harsh and questionable judgments. It remains one of my favorite stories because it allows me to let my passion for theatre and literature loose in my classroom. Theatre forces you to hold a mirror up to yourself and society and confront what you most fear or desire. Really confront it – not with a whimper but a strong, forceful shout.

Yes, shout! You’re allowed to, you know. When was the last time you were faced with a mounting challenge, and instead of complaining about it, you gave it your best barbaric yawp? MORE WEIGHT. Bring it on! You got this! We expect this kind of enthusiasm from our favorite sports stars but not when bagging broccoli at Wegmans. “Bag all the veggies! GO! GO! GO” It’s like having professional motivational speaker Matt Foley coming out of his van down by the river and giving you a pep talk as you do the dishes. Allow yourself that. It’s a change in perspective that can change how you look at things you may have previously found distasteful. Give yourself permission to cheer yourself on. Sometimes it’s the only cheer you’re going to get so don’t be shy to admit it. At the very least you’ll get a good laugh which is rarely a bad thing in my book.

That level of enthusiasm is a gift we can give ourselves. Allow yourself to be passionate and filled with gusto no matter how menial the task. Believe that you can handle the weight and bring it on. I can’t see you getting crushed under that door – you’ve got this. I know you do.

Karen Padden
Karen, Queen of the Paddens and first of her name. Teacher, Baker, Petter of Cats, Multiple Sneezer and Crocheter of Wubbies. Believes in kindness, always.