About The Author

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?

Beyond The 9 to 5

For those of you who don’t already know, before I was diagnosed with PNH and AA I had gone to school to be a mental health therapist. I thought that this was the right career path for me at the time. All I really knew was that I wanted to help people. As it turns out at my last job as a therapist I was fired. Not for falling behind on some case notes, but for being on medical leave for too long. I know… can we say ILLEGAL?? I had taken the LOA because my body needed time to adjust to new infusion medication (Ultomiris). I got the big axe just before the pandemic had hit, and on top of my health this was another blow I was not prepared to take. Feeling completely adrift with nothing but time and empty space to fill.

My God… was earning my Master’s degree a complete waste of my time and money? The answer is no. It is my personal belief that education in any form is never wasted. Many of us in the United States culture associate our identities with our careers. It becomes imbedded within us to succeed at all costs within the work environment.

I had been given the task of finding my identity without a career, because for many years I was barely able to get up out of bed. It was back to basics for this girl. Saying goodbye to my first career choice was painful at the time, but now I see it as a blessing. It wasn’t meant for me so I gently let it go, like releasing a single balloon into the sky.

A couple of weeks back, I was prepping for an interview. Sitting in my living room glancing through my notes and my two-page resume. There it was… a list of my accomplishments in black and white, that filled the white space so effortlessly. Those things that I had once held in such high regard had lost its sense of pride and importance. I thought to myself looking at the pages ‘Does it really matter that I have earned a Master’s degree?’ All of the bullet points seemed smaller somehow than before. My list of accomplishments are much different now.

My achievements go much further than working a 10-hour work day, or getting that year end bonus. While others may be working late, my body works 24 hours a day to keep those blood counts from plummeting. Some may be focused on getting that next big promotion, while I worry if my body can handle the rigors of the standard 8 hour work day. My point to this is when did what we do for a living become who we are? I know that when I die, I don’t want my plaque to read “She was really devoted to her company, and always completed projects ahead of schedule.”

We are so much more than what we do. Life is so much more than a list that we compile on our resumes. So, am I working? Yes. But, not in the 9-5 way that you might think. Do I have things to be proud of? Yes. But, these things won’t be found on my resume. The Work I continue to do learning to cope with my diagnosis and the progress forward each day is what I am most proud of. And whether you can see it or not, I can feel it with every fiber of who I am.

“Ironic that in order to do my life’s work, I had to quit my day job.” -Michael J. Fox.

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.

Still Burning the Candle

Hungry for more, she sits and she waits.

For others to seemingly control her fate.

Her body still shackled,

The mind miles ahead.

But she can’t ever catch up,

her legs are now filled with lead.

Darkness around, this lonely place,

Her emotions etched right underneath her face.

Look into her eyes and you will see,

Just what this illness has taken from me.

Hospitals, treatments,

Her patience has worn thin.

Her rage and sadness start to seep from within,

She will always mourn the person she would have been.

So tired, so sick of the shit,

The flame inside is barely lit.

God help her, how much more can she take?

All she wants is for you to fix this mistake.

The girl in the mirror sometimes looks tired and weak,

But all she wants is the chance to speak, to change.

Because she knows at the end of each day in her heart,

She will not just survive,

She was built for more,

And chosen to thrive.

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

There’s No… Going Back Home Now

We are all familiar with the 1939 classic story “The Wizard Of Oz.” It starts off with Dorothy singing on the family farm, daydreaming about that perfect place that’s somewhere over the rainbow. Then the wind picks up with black clouds overhead. The rest of the family including her beloved Antie Em find their way safely into the storm cellar. She tries to yell for her family to open up that cellar door to let her inside. They can’t hear her over the storm, so she seeks shelter on her own inside the house. The storm blows so fierce that it breaks the window and knocks Dorothy completely unconscious.

For reasons that are still unfolding, I and many others have been given this blow to the head just like our dear Dorothy. She thought she wanted to be safely under the cellar with the rest of her family, however something out of her control took her into this alternate universe. The Technicolor Universe. I along with so many others like me are living in this new reality. We now walk around with rose colored glasses, when the majority of the population is still viewing the world in black and white. Now, parallel to Dorothy we learn with time we can’t just sit like a bump on a log waiting to be rescued by that guy behind the curtain.

I fought so hard against living in this alternate place thinking… “I just want to go back to my pre-diagnosis life…my black and white days.” But this is not my world anymore. I mourn the version of myself that used to exist, while also exploring who I am and what I want in this world with all the colors. And you know what? Sometimes it can be a lonely fucking place and a scary place. On the other hand, I get to experience levels of myself that no one else will ever see within themselves. Given this rare pass into the underworld I get to rebuild who I am. Everyday I have a little bit more of my own version of Emerald City.

I remember to be graceful with each step on those bricks because this new version of Dorothy has been through so much. This is a daily practice. I have to remind myself that the normal societal standards or pressures no longer apply. To put it simply, my house that I thought I wanted no longer exists. It was demolished by the twister known as my illness. I now reside in Technicolor.

So, you may think outwardly that I am falling behind in your world, but please know that in color I am right where I need to be. This place is beautiful because it has so much depth beyond the black and white. So, you see I can’t go back home ever again because I don’t know that world. I don’t know that me. I intend to work with…not against what has been given to me. To create something beautiful out of something seemingly so ugly. No, we are not in Kansas anymore, and no, I don’t want to go back. I can’t. This is real life.

There’s No Place Like Color.

If I’m Smiling…Am I Happy?

Imagine yourself walking down a hallway. A person is coming toward you and as you pass each other you blurt out the familiar phrase “Hi, how are you?” It’s second nature to respond with “I’m good, thank you.” Or something like “I’m doing well, how about yourself?” Or you might say “I’m living the dream!” As a society we have all become so conditioned to outwardly appear a certain way to others.

Let’s take a moment to talk about posting on social media accounts. What are the moments that we all want to capture with the flash of a camera? It’s to document those exciting times like going out to drinks with your girls, the day your daughter graduates from college, or when you become a proud grandfather for the first time. We post on social media to share with others those special moments in our lives. We portray more often than not that our lives are one good time after another.

May is Mental Health Awareness month. Sadly, there is still a very real stigma surrounding mental health. If we need help or take the initiative to take care of our emotional health we are often seen as weak by others. Throughout our days we are constantly bombarded with messages of being perfect or always having that positive attitude. It is exhausting.

What if I am not okay? Can we take some time to sit in that? If my emotions make you uncomfortable, imagine what it must feel like for me. When I was first diagnosed especially, many people said things to me like ‘stay positive’ ‘it could be worse’ or my personal favorite ‘god only gives us what we can handle.’ I realize that people are just trying to help, but statements like these can be very damaging and dangerous.

Living this life that I have lived with diagnosis has been very hard, putting it mildly. I refuse to sugar coat it. I am not stating this fact to get pity, admiration or attention. I say this because I am a realist. Having a range of emotions when learning to harness an illness is not only appropriate, but absolutely necessary. This is why toxic positivity can be just that. Toxic. I don’t want to tell you only what you want to hear. Let me be clear… I absolutely have optimism, faith and goals for my life. My diagnosis is a part of who I am but it is not who I am at my very core. To really learn to love that part of ourselves we need to feel supported and not stifled. This goes for everyone, not just those who may have a chronic illness.

My face is smiling… does this mean I am happy? The eyes tell us a million times more than a smile ever does. I want to continue this conversation around mental health because it is so often minimized. It took several years for me to start to talk about my illness. I wanted so badly to keep up with my peers. I thought maybe if I didn’t acknowledge that part of myself that I could just ignore it and push past it. BIG mistake! It just got bigger, heavier and more painful. Working through my emotions is providing a lightness. It sounds cliché but growth comes when we can learn to love all the parts of ourselves. So, am I happy? I will answer you honestly. I’ll say I’m working on it. That’s real. That’s honest. That’s honoring all the parts of myself.

I want to thank all of those who sit with myself and my fellow Warriors to hear all parts of us!!!