Tag: SELF IDENTITY

The Hunger

This morning I was scrolling through Linked In posts and found this quote “Sometimes it’s not about who has more talent. It’s about who is hungrier.” I would assume the author is not referring to hunger for a plate of pasta carbanara—although that does sound delicious doesn’t it?

All joking aside though– I was struck by this quote. If I apply this to my own life… I am Starving. I have a hunger inside of me that is almost indescribable. However, I will do my best to put it into words so you might understand. I have a hunger for my Life. The one that you might not see that I fight for every day that I open my eyes. I have a thirst for parts of myself that I am not sure I will ever get back.  I have a hunger to walk in a room again with total confidence- I want my outsides to match my insides. I have a hunger to keep growing into this woman I haven’t met yet. I wonder what she will be like?

I want to drink in the sunlight and spit out the shadows that linger behind me. A hunger to find true joy again within myself. I welcome silliness and more laughter. I believe that we all have talent – but it’s up to us what we choose to do with it. What good is talent without the fire behind it? The hunger helps us all grow into our best selves. I had made the choice after being diagnosed that I no longer wanted to pursue mental health therapy as a profession. I let that part of myself go, and do not regret it. In essence I am now trying to create something from nothing. I may not have the X number of years to show a prospective employer, but I do have that hunger in my belly that will never cease.

In this current moment my health is stable. This is something I never take for granted. I have survived so much already and know there is more to come in my future. As time moves us all on though, I think this hunger has morphed into different things for me. At one time, I wanted a life that I no longer know anymore. Another time, I just wanted to survive and make it out alive. At this current time I want to feed my desires for more in life, whatever that may be. Many times, I have felt like I have nothing left to give, the pain gets to be too much. Time and time again we get up and fight.

 A quick note regarding job rejection emails – the template always says something like “ we regret to inform you that you were not chosen at this time.”

In response to this I think the following: “I regret to inform you that I will keep going, and ultimately life tends to unfold as it should.”

Whoever might need to hear this… keep holding on my friend. You are not alone.

The Window

I feel like a failure. Whatever talent I have or had is being wasted as each minute rolls by the ticking clock. The sound of it getting louder and louder. Taunting me. I feel like a beggar. Tattered clothes and all, peering into the window from the outside. Everyone else is inside the door. As I look in, I can see the warm light surrounding them. I can hear from a distance people laughing, smiling, as they climb the ladder of outward success. It’s snowing now, the darkness blankets me as I take slow breaths in the chilled air.

Darkness. My old familiar friend. We have come to know each other so well. For so long I have relentlessly tried to break free from you. I can’t feel my legs now, standing in the snow. My feet get wet and tired from waiting so long outside in the blizzard. I watch still, the others can’t see how I envy.

The ticking of the clock is fierce now, almost screaming at me. Do something, move. My feet frozen in time, stuck in the snow. I beg for help, but no one can hear me because I am on the outside, alone. I try to tap on the window. No one answers. The fire inside the house fills the space with warmth. At the same time, the fire that was once inside me barely flickers. I bang on the door. Waiting for it to open. Nothing.

Silence for me, while the inside roars with breath and light. I do not ask for pity. What I ache for is opportunity. Not given, but rightfully earned. Know this…my struggle is real but do not mistake this for weakness. I may grapple with this illness, but that does not mean I belong in the discard bin. I have a voice, I have opinions, and I have life. I stare through the window, wishing I could grasp my former self.

I start to fade away into the darkness as time moves us on, yet keeps me still. Waiting. Just waiting to join the rest of you.

Mirror Mirror… What Do You See?

Each morning I wake up and take those few first steps of the day into my bathroom. I sweep my hair up off of my neck. Glancing in the mirror, I fumble around at the sink with the hot and cold water. Trying to set the temperature somewhere in between scolding hot and freezing cold. I bend down slowly so my face gets close to the running water. I cup my hands together and let the water slap me across the face. As I wash off the night before, I try to control my attitude or outlook at the beginning of each day. Start fresh, I tell myself. It is a new day. Yesterday is now somewhere down the drain with the rest of the water from the faucet.

It’s still early in the morning now. So, as I look at my reflection my edges are still fuzzy. I pop my contacts in, left eye first, and then the right. My world is now in complete focus. If I am seeing 20/20 then why is it that I feel so lost?

Mirror Mirror…What do you see? Do you see what I show you, or do you see through me? Can you see the pain behind my eyes, or just the smile that I show to the world? As I brush on my eyeshadow and eyeliner for the day, I attempt to layer on a piece of armor. Make-up to protect that little girl reflected back at me, that Mirror Mirror… only you can see. Mirror Mirror…who do you see? Who do I see? Who do I want to be?

 As I head to my closet to pick out an outfit I feel like an imposter. I put on some nice dress pants, and business casual top. I dress the part because I fear if I don’t, that little girl from my past will reemerge. As I put on this additional armor, I feel myself trying to outrun my past. All the hospital stays, clinic visits, blood draws, painful procedures. Wanting to step out of this patient role for a little while and try out my legs with the big boys, so to speak. Going toe to toe, feeling like I have something to prove. I step into this healthy world ever so briefly. I so desperately want to make up for lost time.

This September, it will be eight years since my diagnosis. Eight years of fighting to live. Eight years of holding on. Speaking even if my voice shakes. I find myself pushing back that voice that says “you can’t” or “you don’t belong here” or “you are not enough.” I push onward trying to grasp a little bit of control.

Each morning, I slow down in front of my mirror in a world that has us programmed. Programmed to move faster, go harder, push faster. I let the water slowly run down my face and wash off my armor for the day. Taking the conscious time to be with myself and who I am in this moment. The mirror reflects back to me, sometimes things I wish I could forget.

But we cannot simply avoid the mirrors within us. As a patient, to start accepting all parts within us can be very painful as well as a beautiful thing. The little broken pieces and the whole pieces make up who we are. Try to be kind to that reflection staring back at you. It may not look like what you thought. Give yourself the time to heal from loss, to break, to scream, to fall down. You are not alone. I am right there on the floor trying to pick up those broken pieces too. So, rest tonight. You have done far more than others can see from the outside. Mirror Mirror… What do you see?

The Little Tree

When eating the fruit, remember the one who planted the tree.

~Vietnamese Proverb

Thanksgiving has now come and gone, with Christmas less than four weeks away. Holiday time for many is often a time of reflection and introspection. It’s a time to pause even if just for a few moments among the hustle and bustle this time of year often brings. I found this quote and wanted to share it with you. As many of us know who are living with a chronic illness, this can be a lonely road. I continually feel cast outward fighting up the stream of life and this can be very exhausting both mentally and physically. I often feel without, as my peers steer their ships far off into the distance. Too often I ask myself why am I the one to be faced with this seemingly impossible challenge? Yes, these are heavy questions often on the minds of myself and others like me.

I am taking this opportunity to stop and remember the one who planted the tree in my story. Some days I can hardly breathe because of the weight I carry. The interesting thing about life though is that each day we can have the chance to start something new. What if this something new is to pause and be grateful that we opened our eyes today. Maybe you build a leaf on the tree you have worked so hard to create from absolutely nothing. Maybe you take the time to heal today after a mental or physical storm that happened yesterday. What is it that you need today? You have the choice to decide everyday in even the smallest of ways.

I am often surrounded by other’s opinions of what I should be. How I should talk or act. I too often have kept quiet about my illness to make others feel more at ease around me. This voice needs to be heard. As long as I fit in this little box and don’t make any waves, everything is smooth sailing on the surface. By appeasing someone else, we shrink our authenticity and our voices to fit within another’s expectations. By listening to ourselves and voicing our needs we are taking the time to nourish the tree we have created into existence.

We have the ability to create our own support systems. We can choose to pick up what or who serves us, and leave the things that do not. Our relationship with ourselves is the longest relationship we will ever be in. I am a firm believer in we accept what/who we allow into our lives. As that little voice inside of you grows, you will more clearly be able to see what serves you in this moment. I have great gratitude for those who have helped lift me up and slowly water my little tree. The little droplets have given me strength on those days I feel I can’t go on. I bend a little more towards the sunlight, and a little less into the shade.

The Seven Year Itch

This month of October is the seven year anniversary since I was diagnosed with PNH and AA (Paroxysmal Nocturnal Hemoglobinuria) (Aplastic Anemia). Somehow this year feels different for me. Throughout my days recently I catch myself reflecting on this one hell of a curve ball thrown right into my chest. I was 28 years old at the time. I had so much light in my eyes, but quickly was confronted with this darkness that I never wanted to know.

The first couple of years post diagnosis I was totally numb, and tried to numb the pain even more by reaching for the bottle. It was warm, a sense of comfort at a time when I was slowly fading into the background. A part of me had felt like I had died already. I was chasing a version of myself that I so desperately needed to be. Or at least I thought I needed to be. I lost her. She didn’t die, she changed and grew into another version of herself.

It’s seven years later now and some old parts of myself are starting to reemerge. The anger and sadness I carried with me at the start somehow have gotten lighter. I have gotten lighter. It sounds cliché but I have learned to let go of the things I can’t control.

It has taken me years, but instead of battling against myself and this diagnosis, I have learned to be kinder and gentler with myself. I take risks, step outside of my comfort zone to see what this universe has in store for me. So many times this illness has tried to demolish who I am and what I want to become. But every time I start to rebuild, I am stronger, more humble, and give myself the time to heal before trying again. I have grown to accept more and fight less.

Just because we accept however, does not mean we remain stagnant. This is a delicate balance of pushing ourselves versus giving our minds and bodies the rest it so clearly needs. “If it doesn’t open…it’s not your door.” This is a quote that has always resonated with me.

The past seven years I have come across many doors. All different colors, knobs, and sizes. I have tried to knock. I have tried a secret password. I have tried using a crow bar in the middle of the night (figuratively ha!). I have tried a running start to bust it down. I have tried using a whistle. I have tried it all to get the damn thing to open. What I have realized is those doors were never for me. I am figuring out the blueprints to build my custom home. Building your own home takes a hell of a lot longer than opening some little door.

Frequently Asked Questions

Do you…have a job yet?

Do you…have a relationship yet?

My answer to these questions should not determine my worth. You may think that I don’t hear the dissatisfaction in your tone of voice, but I do. You may think that I can’t see the look of disappointment in your eyes, but I do. You may think you know how I should live my life…but here’s the thing…only I do. Just because I get a job, a relationship, or am out on my own does not change who I am at my very core. From the outside it would be easy to think or say that I am not doing enough, or moving at the pace you would like. The pressure, the subtle comments that you think I don’t notice…I do. Success is subjective. My idea of success may look very different than yours but that does not mean you have the right to look down on me and think that you can tell me I am less than.

I am successful because I am alive. I am in a whole different arena than you. I was given this challenge, and it was demanded of me to go deeper. To explore parts of myself that I never knew could be there and to nourish those parts. So, you may not know where I am going or what I am doing…but I do. I am building this new pathway for myself, laying down each little grain of support beneath my two feet. Going through this very unique journey can be very lonely and isolating. We need support. We need you to listen, to lift us up. So instead of looking over in my lane to see what I am doing, please turn your focus inward, because this is what I have been doing. I am turning inward healing my bruises that I so often hide from you. Healing mentally and physically, making myself stronger for what the future may hold. 

Please be kind. We go through so much more than what you may see on the surface. It is not my job to appease everyone and get a pat on the back at the end of the day. It is my job to get myself through the day and be at peace with myself.

Do I have a job yet? Yes, I volunteer my time to help other patients in multiple organizations which will some day turn into a meaningful career and also write this blog to connect with my fellow patients.

Do I have a relationship yet? Yes, I have a relationship with myself. I have been building a solid foundation… and by the way we are pretty serious!!

You are Enough.

Much Love & Support,

Sarah

The Sum Of A Resume

The white page is blank. The space bar is blinking seemingly begging you to write the words in the space. I format the page using a legible font and size to describe myself to the professional world. How do I display a life in such a way that will stand out? The competition around me is fierce and I feel like a piece of pray surrounded by lions. You start to question yourself. Do I know this part of myself? Is she still buried somewhere underneath all the scars and pain she knows all too well. The purpose of the resume is to show people what you have done and what you can bring to the table. However, if you read between the lines on the formatted page, this is where I reside.

If you were to look at my resume you would see gaps of employment. “Why were you unemployed during this time?” My hands clammy and throat starts to dry up. Am I supposed to lie? Tell you that I took some time off to “find myself” or that I spent that time backpacking through Europe? Full disclosure, I have skirted around the subject and also taken the risk of telling a future employer the truth regarding my bumpy job history.

I have learned that I cannot hide this part of who I am. For so long, I continuously fought against acceptance of my diagnosis. Through time and introspection I have learned to let go. Instead of fighting this tsunami, I lean into it. I have never been an overly religious person, but living this life now has opened me up to trusting in something bigger than myself.

This diagnosis was given to me for a reason, and that reason is still unfolding with each passing day. The energy it takes to fight against something is exhausting. The energy it takes to lean into it is far easier. I used to feel ashamed and resentful of my illness because it took so much from me. Now, I acknowledge it and work with it to heal myself and hopefully help others who struggle in similar ways. It has become lovingly woven into my identity as a strong young woman.

Listing the qualities you have on a bulleted piece of paper does not sum up who we are as human beings. The real strengths we acquire happen outside of that 8.5 x 11 resume. So, on paper you may see a candidate with unemployment gaps. I see a young woman who fights everyday to find her place in this world when circumstance took her away for a little while. I am still here. Still smart, capable, passionate and gritty as hell. Don’t just gloss over the words on the page. See me and the fight that’s still there deep inside.

The Invisible Fence

After my first round of treatment was completed I was finally able to come home. I remember being pushed outside in a wheelchair with tears in my eyes, just so thrilled to feel the crisp air on my face. When I left the hospital, I had a PICC line inserted in my right arm and a bag of medications to carry with the other. I took out all the orange pill bottles to see what they had been giving me in the hospital. I started to cry uncontrollably and I let out a scream that I had never heard myself make before. I felt so small, so weak.

Looking back on it now, I wasn’t feeling at all. I was going through the motions, just existing and not really living. I couldn’t process any actual feelings because the physical trauma had masked them. I was so exhausted, I had nothing left. I was on the other side of the fence and didn’t even know it yet. It took effort for me to even speak.

Two months later, I was still unable to work. My friends had decided to throw a fundraiser for me at my local pub to help pay for medical/living expenses. There are pictures of me on that day. I don’t see myself.

Making my way through the crowd of people, it was as if I was speaking about someone else. Seeing the head tilts and the sad looks over and over again. I was on that other side. The one needing help, not giving it. The one losing her job, not getting that promotion. The Sick one, not the “nothing can happen to me” one. The one with friendships pulling away because they are uncomfortable having a friend with chronic illness.

I must say however, that I am blessed to be on my side of the fence. I can say with absolute certainty that I am my most authentic self. That American Dream that everyone attempts to chase is just a disappearing horizon. Monetary success does not equal buying your way out of being sick. What matters is who is willing to meet you face to face at that barrier. Who is willing to just sit with you a while, until you are strong enough to Break it down.

Thank you to all of those who Choose to sit with ALL Fighting Warriors.

And to my Future Forever…

That fence around my Heart will come all the way down for You.

You just need to be willing to jump over it.