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jencraigkaiser

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This post is a bit different. It’s mostly because I want to remember this time in my life and someday reflect back on how I felt.

Have you ever gone through some really tough times and you hear incessantly from people, “stay positive”, “this too shall pass”, “everything will be fine”, “God will never give you more than you can handle!”, “everything happens for a reason…” These phrases literally make me cringe.

Most of you know that I am not a negative person. I have been through a lot and still hold my head up and do 90% of what I set my mind to. Whether that’s travel, spending time with family, exercise, volunteering, working, tasking away at home… I am not the sit on the couch and feel sorry for myself sort of person. I don’t really have an option but to be strong. I mean I do, but where would that leave me?

But, what does instill negativity in me is toxic positivity which is pressuring people to look on the bright side and suppress their anger, sadness, anxiety, and grief. It leaves us feeling alone. Instead, a healthy way of supporting is shielding people from those hard times and inviting them to express their pain, show them they are not alone, and that this won’t last forever.

There is an Emily Dickinson poem that starts out “Hope is the thing with feathers- that perches in the soul- and sings the tune without the words- and never stops- at all.” She never says one stops hearing the song of hope, but that hope never stops playing. So instead of telling someone to “stay positive”, or “God won’t give you more than you can handle”, maybe say “I’m sorry you are so sad, overwhelmed, or in so much pain. Your pain is real, but the song of hope is still singing. I know you can’t hear it, but someday you will.”

I know that’s a bit odd of a post for me, I’ve just been really struggling lately with this flare, side effects of prednisone, and nearing my first infusion of a whole new scary territory for me. In one week I will start a regimen that has not been approved or studied very well as a combination of treatments. There are a lot of risks. On top of that, my prednisone has induced some weird side effects this time around. It’s so different. I am dealing with a very low heart rate that is really a struggle as well as some muscle, tendon issues which could be prednisone as well. Tomorrow I will start the antibiotic I need to be on to prevent some weird type of pneumonia. Who knows how that will go, but I’ll remain hopeful.

I’ll end with saying that I know so many dear friends and family who are going through hard times right now. Whether it’s sickness or grief, they don’t need you to constantly tell them to stay positive. They need you to validate their emotions, actively listen, be empathetic, and really just tell them that “it’s ok, to not be ok.”

The holiday’s can be a very joyful time, but also a tough time when you are missing those you’ve lost, don’t feel well to embrace some traditions in their fullest, or just suffer from overall sadness and feeling overwhelmed. I have always loved Christmas and this year is a bit harder for me, but I will start by breaking my “don’t decorate until after Thanksgiving” rule and breaking out the Christmas stuff today and see where that leads me.

Thanks for reading and Happy Turkey Day! I’ll post once I start the new infusion next week.