Category: DIAGNOSIS & MENTAL HEALTH

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 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.

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!!!

I’ll Take The Stairs

“No man is an island entire of itself; every man is a piece of the continent, a part of the main.” -John Donne

I learn this over and over again with each day. Before my diagnosis, I was so driven to succeed and I saw my path as a mental health therapist to help others. I created this direction in my life and was so proud to have built it on my own so efficiently. I was so alive with promise and self-confidence. I was ready for my career, to make my parents proud, to make myself proud.

All of that was swept away with one phone call that shifted my entire being.

I couldn’t see it at the time, but reflecting back I had options.

Option one was to lay on the floor in this unfamiliar building that I was violently thrown into. Do nothing, say nothing, feel nothing. Creating no meaning of this experience in my life. Allowing myself to become an island without growth. Continuing to watch others move beyond me, further away, as I remain stagnant blending into the edges of the floor.

Option two I could get up off the floor and walk into an elevator. Alone. It is secure. It is predictable. It has a methodical way of getting you to a specific floor. I push the button and I effortlessly get taken to whatever floor I choose. This requires little mental effort and I can choose to keep the door closed while I wait for this machine to do its work. I am not an island. No. I need others to help make my elevator function. Because no matter how much I may want it to go up, I do not go anywhere without several mechanics.  

Option three I could start at the bottom of that floor and take the stairs. I look up and I start to sweat as I see the staircase and its winding features. The staircase is unpredictable and seems to have no end in sight. It reminds me of the complexities of the human mind. The curves of the steps are the curves in my mind never linear and ever changing. The railing serves as my support. I know it’s there if I need to slow down, stop, or refuel. The railing is my therapist, my friend, my family. I do not know who or what I will come across when I take the stairs. With every step I remind myself…I am not an island.

Are the stairs mentally and physically exhausting? Absolutely. Are the stairs more difficult than taking an elevator? Yes, without a doubt. I believe to become the best version of the self we must do the hard work, confront the obstacles and celebrate the victories along the way. To really recognize within yourself when it’s time to take steps and when its time to rest by grabbing that railing by your side. Even though my progress has been wiped away many times throwing me back down on the ground floor, I will always start again by taking the stairs. Every single time. I’ll take the stairs. Side note…I’m getting great calves!!!

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.

A Letter To You

Dear ______________ ,

Please know that sometimes I do not want to talk about my health.

Please know that even if I appear to be doing well, still check in with me.

Allow me to feel and express to you whatever feelings I may be having.

Please know that if you have questions about my diagnoses, Ask me!

Talk to me about how you are feeling, don’t worry I can take it!

Please do not introduce me as your “cancer friend.” I will decide who I share my story with, not you.

Please know that you are not exempt from getting a serious condition yourself. It can happen to you just as easily as it happened to me.

Please do not compare me with your cousin, aunt, sister, or other person you may know with a similar health problem. Each person’s story is different.

I am aware that when I am out in public I often times do not “Look Sick,” but you don’t see me on my worst days.

Sometimes when you tell me that I look well or beautiful, I still hesitate in disbelief.

Please do not pity me, I can see it in your eyes. I am stronger than you will ever know.

I know that you want me to have a positive attitude, but please know that I will not ALWAYS be positive. And you know what? It’s reality to have other feelings. Please validate my experience.

Please know that I will not settle down with a man who can “just take care of me.” And No, I will not be with someone because of their insurance plan or wealth. This is insulting. I will find love again when I am supposed to.

Some days I will just be too exhausted to go out. Please know that I still want you to ask me and include me in things.

Please know that having something physical, is also very much mental.

Yes, I do see a mental health therapist, and please know that there is nothing wrong with it or shameful about it.

I know that I have a long road ahead, so please know that I still need you in my life and wouldn’t have gotten this far without you.

Your actions and words do not go unnoticed by me. I see them, and I see you.

Do You See Me…?

Standing In The Ashes Of Who I Used To Be

Stepping under those florescent lights had burned away this young woman I used to know. That’s the honest truth. I had now entered into a world that replaced my identity with obscure numbers and letters on a spreadsheet. PNH is a life-threatening blood disorder caused by a mutation in the PIG-A gene. As a result, the red blood cells in a body destroy themselves and create overall bone marrow failure.

 Here are some numbers about me that you may not know. When I was diagnosed with PNH my Hemoglobin was at 6.7. Hemoglobin is essentially your red blood cell count where iron is stored. The normal range for an adult female is anywhere between 12-16. If your body cannot produce enough Hemoglobin, your cells do not get sufficient oxygen. Platelets are an important function in the body because they help form clots to prevent spontaneous bleeding. A normal platelet count ranges between 150,000- 450,000. I had a platelet count of 10,000.

PNH affects 1 person per 1,000,000 (million) people in the general population. One third of those with PNH will develop Aplastic Anemia (AA) at some point in their lifespan. I have both.

My body was attacking itself, and I could do nothing.

My parents could do nothing but sit in that tiny room with me. Then the questions started shooting out in a panic. To this day, I can still hear my dad’s voice raising at the doctor and shouting “Is it something in her diet?!?!” I swear I thought the whole clinic could hear. He would continue to ask this at several appointments in the hopes that this could be solved with a minor diet tweak.

I was later moved into another little room for my first of several bone marrow biopsies. I lay on my stomach quietly as the doctor explains the procedure. The extraction of bone marrow is as about as pleasant as it sounds. I focus on my breathing while what feels like a wine bottle opener is being pierced through my back. Anesthetic NOT included.

In those moments, under those lights, I had lost myself.

My body was gearing up to fight and survive, while my mind and sense of self shut off. I was a medical record number (MRN) now, I was a collection of cells under a microscope, I was defective, and I was a lab experiment. I was not Sarah. People were talking around me now, not to me directly. I felt nothing. I was numb. I fought the acceptance of my diagnosis for so long. I wanted so badly to hang on to my former self, but I realized she wasn’t there anymore. I was chasing the girl I used to be, and denying a part of me that would change forever.

I am one in a million. After struggling to accept for so long, I now embrace.