Strength and Courage.

_{^{context here — if you have said these things to me, I love you and don’t read anything into this. This just my journey and where I am today, I’m always honest xx}}

These are words I’ve heard a lot in the last year. I might add “well you look good” and ‘at least it happened during the pandemic” to the list. And yet, I feel as far away from strength, courage and looking good as I can. And sure, it was during the pandemic, but it’s for the rest of my life too. For someone not in the daily grind of disease maintenance or treatment, I get it, what I’m doing might look like strength, may appear to be courageous….

For me, what choice do I have?

I’m just getting up and doing the next big thing in front of me the best I can. Some days I can do it with a smile and some optimism. Some days it’s truly an effort to get up. The reality of it all is in direct conflict with the vision of my life I defined years ago. That collision is hard and my only choice is acceptance. I’m working on acceptance.

I will admit, when I summarize the last 370 days, it sounds insane:

Clival Chordoma diagnosis
MOG AD diagnosis
which led to:
29 nights in the hospital (that’s more than most Februarys)
2 inter-cranial surgeries
38 rounds of radiation
60 rounds high dose IV steroids in 3 hospital stays
5 rounds Plasmapheresis
5 rounds of IVIG (and so many more to come)
Pneumonia
4 sinus infections and antibiotics to match
10 billion (that’s only a slight exaggeration) CT and MRI scans

And I’m not done.

I’ve gone from worrying about my health in a proactive, let’s eat healthy and exercise kind of way to having to worry about cancer and MOG EVERY DAY!

It’s overwhelming at times, so I focus on the next thing ahead, one day at a time. Not strength, not courage, just focus.

I know it’s hard to know what to say. And everyone is a little different. For me, you don’t have to know what to say. You don’t have to say anything. Or start with, ‘boy that sucks’ – or your version of that. Please don’t praise me or congratulate me. Please don’t define it for me or rationalize it for me. Please don’t dismiss it as ‘lucky timing’. Just be present with me, the normal me. See me, not the illness. I realize that sounds foreign given the list I just wrote above. But that’s my list, let me have it. See me beyond it.

I’m navigating the emotional and psychologic aspects of it all the time. I don’t know what to do. I DONT KNOW WHAT TO DO. So I blog, I talk to my therapist, write and keep moving forward each day. Some days are easier and better than others.

So what can you do, for me, for other loved ones who might be sick? My suggestion is this.
Love me. Be present with me. Ask me how I am. If I want to talk about it, I will. If I don’t, I won’t. Mostly invite me out. Say to me ‘that fucking sucks’….give me a hug…..pour me a drink and let’s move on.

I need normal. I need normal, even when normal is hard.

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