Tag: mental health

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 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.

And She Starts Again…

She gets up again with faith and fire in her heart.

My last post was early April, so I grant myself grace as I slowly slip back into the rhythm of writing. For those of you who may not know, I took some time away from blogging because my grandmother passed in early April, and then five weeks later my grandfather followed her. There is never a good time to lose a loved one, but the added stress of Covid-19 came with many more levels of grief for my family and I. I was quarantined during that time like many of my other friends with pre-existing health conditions. But, when that phone call came for us to come to the hospital to say goodbye to my grandmother I was at the hospital without hesitation.

Even though she had just celebrated her 90th birthday, we were not expecting her to leave us…she was tough, a fighter, and still sharp as a tack! Five weeks and one day later, my grandfather left to be with his beloved. I believe that he died of a broken heart. He just didn’t want to be without her.

When I was in the hospital room with my grandma, I prayed. I told God that I wasn’t ready to let go, but if she needed to go, I understood. I understand that my grandpa needed to be with his wife, needed to hold her hand again. Grief comes in many forms of emotions. It is not linear. I am no grief counselor. However, I do know that it is important to allow yourself the space to feel whatever emotions that do come up for you.

What is my point to all of this? I took time away from writing to take care of myself. As all of my fellow warriors know, extra stress mentally or physically is not optimal if you have a health condition. I recognized in myself that I needed to take a step back and focus on my family. So, when those external pressures start to stack up from those around us… remember whose race you are running on that track. You are in charge of the pace, You can decide to stop for a bit to rest. Hell, You Own the damn arena! Be kind to yourself and to others. Some of us may be fighting battles that are not seen by the physical eye. The Strong reserve the right to fall apart from time to time, this does not show weakness. This shows humanness.

As She starts again…She will rise.

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.