Tag: RESILIENCE

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.

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

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.