Author: Sarah

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 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.

2020 Reflections

We made it. It is the end of 2020. The Year like no other before it, for so many reasons. I’m sure I am not the only one carving out some to reflect and process what an unprecedented year this has been. I remember celebrating out with friends on New Year’s Eve this time last year. Everyone had a glass of champagne in hand, balloons dropped from up above and voices yelled the familiar “Happy New Year!” This year has an entirely different tone. Instead of feeling this renewed energy to bring into 2021, I feel such a mix of emotions. So much of this year has been about Loss for me and so many others.

I started this year of 2020 on a medical leave from my job that I had been working at for a year. For the first time in my life, I was fired. Job Loss. Through much reflection, I had come to realize that I no longer wanted to pursue being a mental health therapist. How could I be expected to hold my clients up, when I was having trouble holding myself up? You cannot pour from an empty cup.

Then, as we all know the pandemic hit us in March. We were unable to celebrate my Grandpa’s 92nd birthday. Early April, my grandmother took a serious fall and was never able to recover. We said goodbye to her and then 5 weeks later, my grandfather followed. Through this terrible loss, I was able to find a new level of strength within myself. I feel a sense of peace knowing they are together and will help guide me through this life.

Fast forward two months…

August came, very aware of the dangers of Covid, I was taken down by something else. Neisseria Meningitidis. That’s the thing about having a weakened immune system, no matter how good you think you are doing physically, I constantly have this question in my head “What is the next challenge I will face, and when is it coming?” My doctors told me over and over how lucky I am. Just another few hours things could have been much worse.

I am STILL here. And so are YOU. Once again, I became instantly humbled, and one thing was very clear. Resilience. This became another word that I will use to describe this year. We are all faced with so much and yet we think at the time that we will never get through it.

The human Spirit is unbreakable. Yes, it’s true that time and time again we get knocked down and pieces of ourselves seem to fall away. Things may even seem beyond repair. I have learned to slow things down yet again, and focus inward to heal and acknowledge those parts of me that were lost. I pause and give us ALL credit for being resilient beyond measure in these uncertain times that we live in. Instead of tearing each other apart for our differences, why does it seem so damn hard to lift each other up when ALL of us have the common factor of struggle?

I think I can safely say that we all have another common factor… HOPE. Hope for Brighter days to come. Hope for a return to the Pre-Covid days. I also Hope for Health. For ALL of us.

Cheers & Love!

Sarah

Let’s Talk About the Forbidden………Money!

Green, Benjamins, Dough, Coin, Bucks, Cash-money, Salary, Wealth, Loot, Moolah… Okay, enough with the synonyms! No matter what terms we choose to use for Money there is always going to be a certain level of skirting around the subject. For those of you who do not know, one of the first treatments I was put on to treat my Paroxysmal Nocturnal Hemoglobinuria (PNH) was a drug called eculizumab (Soliris). I was on one of the most expensive drug therapies in the world coming in at more than 500,000 dollars per year!!! Approved for PNH in 2007, I was just thankful to have this kind of a treatment available. The price tag of the drug didn’t matter, my life obviously was the top concern. I wanted to focus in on the topic of financial difficulties because some people might be unaware that this is something most patients have to struggle with.

The reality is that for myself, I went from walking across the stage getting my college degree, to laying into a hospital bed. I have been on state insurance ever since my diagnosis in 2014. My grandmother always used to tell me that she did not ever want me to lose my “good insurance” through the state. This always made me sad. I told her that it was not my life goal to stay on state insurance. If that were the case, I could only make up to 24,000 per year. How can any person actually survive on this? Especially being a young single woman trying to live on her own with 100,000 dollars in student loan debt…. That’s right! I currently have 60,000 in principal debt plus 40,000 in interest because I have had no choice but to constantly defer my debt.

Why did I have to keep deferring you ask? Well, for starters I am not rich, nor are my parents. In the six years since being diagnosed I have been unable to have steady employment for various reasons all related to being sick in some way shape or form. The amount of money that I owe makes me sick to my stomach…and believe me it has kept me up several nights wondering how I will ever be able to stand on my own two feet.

I know I am not alone when I say the last thing that we should have to stress about is how we are going to pay our medical bills or the mortgage. Something is very wrong with this picture. Not only do I fight the battles that you see, but I also fight to get myself out of this mountain of debt, that silently suffocates so many of us. But, we are not supposed to talk about any of this… right?? Not anymore…this is a battle that many patients fight and should never have to. We did not ask to be sick, so why does this fight for our lives come at such a heavy price… literally?? Silence Broken.

The Tall, Dark, Mirage

Yes, he was. I was fresh back onto the dating scene that summer of 2015. With both intense treatments behind me, I had made a choice to step back out there and give this thing a try. I remember leaving the house that night saying to my mom “well, here we go again.” Which is something I always say to her even now with first dates.

I wore this flowy white sheer dress and sandals. I remember stepping out onto the restaurant patio and locking eyes with this Tall, Dark, Handsome man. I was so nervous I hardly touched the food on my plate. It was completely unexpected, and was so effortless. Several hours later, he walked me to my car and kissed me. That Hollywood Kiss that every girl wants on a first date. Fireworks. I was Smitten.

Not much time had passed, and I was getting ready to tell my parents that I had found the man I was going to marry. Ready to call Dad to give me away, and go dress shopping with Mom.

Just one thing… it was a Mirage. As I stepped closer to him, he faded away.

I have realized something along the way. Some people cross your path to Show you, and others cross your path to Grow you.

This man has shown me that I want someone with depth. Someone with strong enough shoulders to lift me, because sometimes I might not be able to lift myself. Someone who can accept all parts of me.

He wanted my illness to fade away or disappear. The more I couldn’t talk about it, the more parts of myself I had to swallow. I won’t ever do this again. It’s not all of me, but it does exist. It’s the reason that I have had a hard time working. It’s the reason why I have financial difficulties. It’s the reason why I still live at home with my mother, despite being 34 years old.

I let this man go because I knew it wasn’t right. I found my voice and listened to it. To make a relationship work, it shouldn’t be so much work. Could I be married right now? Yes. But, I know with every fiber in me it would have been a mistake. I get asked all of the time “why are you still single?” The answer is simply this… because I haven’t settled. I also want to say there is Nothing wrong with being single. The cliché ‘keeping up with the Joneses’ no longer applies when you get hit with fighting for your life. It has this way of having you think smaller. Like appreciating a calm breeze, or the way your heart quickens when he brushes the hair off of your face. The ultimate goal is happiness. This process has taught me that it starts with ourselves. There is nothing wrong with continuing to grow and work on being your best self.

This girl has come a long way since the Mirage. She was chasing the Mirage… now she chooses to just have fun in the waves of the ocean. Because she has faith that those waves will bring her to where she is meant to be.

Finding That Special One

It wasn’t until after those 2 rounds of treatment that I found my One. Now, some of you may be thinking…Oh God, she’s going to write about her love life! Take a breath guys, the conversation about relationships will come at a later time. Although, I am referring to another kind of special relationship that can be found and cultivated. My Special One is my Hematologist/Oncologist, Greg Vercellotti. He is my Specialist that I have chosen to be my teammate, my advisor, my defender, my rock, and I can fondly say my Friend.

My hope is that everyone is able to find that great working relationship that should happen between a doctor and a patient. In having this lifelong rare illness, I believe it to be necessary to choose your care team wisely. Let me say this again, you have a Choice and a Responsibility to find a care team that you feel comfortable with.

My first specialist was not the right fit. I knew this, but I didn’t have the strength at that time to make a switch because my mind was clouded with treatments, facts, figures, and fear. I would walk into that small office and she would say “Hello, Ms. Nesheim” in a monotone voice. She would walk over to that computer in the corner and start typing away without so much as a glance into my eyes. So much is going on behind those eyes. I wanted her to see beyond the numbers and charts. I needed someone to acknowledge that I was a person with a god damn life. Don’t get me wrong, it is crucial to find a doctor that is well versed in the realm of PNH (or other rare disorder). I knew I needed more for myself. I wanted open, honest communication. I wanted my doctor to show compassion and empathy. Neither of these skills can be taught.

I respect the white coat, but what I have come to know is the man underneath. That Special One. This is a long, hard road and I knew I wanted someone to walk beside me, not miles in front of me. Now that I have that Medical One figured out, maybe that other One isn’t very far behind…

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.

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…?

Not Going to Be A Walk in The Park

In order to see the light, we must first confront our darkness. For so long I struggled with writing down my thoughts because I was afraid of what might come out onto the pages. I wasn’t ready to share with others what this darkness had done to me, what it had taken from me. It all had happened so quickly. With the confirmed diagnoses of Paroxysmal Nocturnal Hemoglobinuria (PNH) and Aplastic Anemia (AA), the googling was in full effect. My mind was racing with so many questions, but I remember barely being able to speak.

This was someone else’s life, not mine. Not now. Why now? Had I done something to bring this upon myself? Can I handle this?

My doctor had asked me about a healthcare directive. No, I didn’t have one. Oh, God… Why? Do I need one? Am I going to live? No time to sit and dwell on those questions now, my doctor had just explained to me a treatment to help with my Aplastic Anemia. It is an immunosuppressant called Antithymocyte Globulin (ATG), a treatment derived from horses. Yes, I said horses. Another alternative is derived from rabbits. “It’s Not Going to be a Walk in the Park” she said. That statement is now burned in my brain. No, it certainly was not a stroll in the breeze. It was more like a slow torture that dragged me on the floor and stood on my neck.

I had arrived at the U of M with my PICC line inserted into my right arm. I was on the Bone Marrow Transplant floor. This was to be my home for the next several days while I get this serum pumped through my body. The first night was brutal. As a precaution in the event of a reaction, this is NOT supposed to be administered at night and should be given at a slow rate of infusion. Of course, my treatment was given to me at night and at the highest speed.

I was in the middle of a sentence, and suddenly my body started to uncontrollably shake. I had rigors, low blood pressure, fever, vomiting, and night sweats. I was brought into the ICU because of all the reactions I was having to the medication. My platelets were lowered to just 5,000. Many patients actually respond well to this treatment with little to no side effects. I was faced with them all.

After I was released from the hospital, I was lethargic and could barely walk. A day later I had developed mouth sores all over my lips and inside of my mouth, down my throat. There I was, black and blue, puffy face from all the prednisone I was on. I was so weak. My mother had to practically carry me down the hallway to get to the car. I had to go back to the hospital, because my first experience wasn’t joyous enough. This was another reaction to the drug that could have been prevented. My purpose in sharing some of these not so pleasant details is not to scare you. It’s to show some of the physical demands on the body that many patients go through at one point or another. However, having a diagnosis is so much more than its physical features……