Category: DIAGNOSIS & EMPLOYMENT

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.

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.