In the last weeks of 2019, social media was full of people talking about their accomplishments of the last decade, or what they were most proud of, or the biggest changes they made. These posts made me feel terrible. What accomplishments could I brag about, apart from surviving?
The last five years have not been kind to me or the people I love. My mother died. Then my brother-in-law died. A year after that, my mother-in-law died. My husband had a stroke and is permanently disabled. My best friend’s mother died, and my other best friend’s father died. Family members moved away. We spent more than a year and thousands of dollars in a legal fight to keep my husband’s disability benefits. I had surgery, and my best friend broke her back. Another friend was diagnosed with a degenerative disease. My dog died.
Yet the first thing I thought of whenever I saw one of those decade accomplishment posts was, “My book isn’t done. I’ve poured so much into it, and I don’t even have a completed first draft.” I realized a few days ago that there’s a pretty good explanation for that. *gesticulates wildly at the previous paragraph*
For the last few years, I’ve marked the new year in cake form. I think my attitude about those years is pretty obvious.
As I thought about this year’s cake, though, I thought about some of the wonderful things that happened in the last few years. My niece and nephew (7 and 4 years old, respectively) are amazing and wonderful and funny. I started playing the cello, and my excellent teacher has also become a friend. I grew extremely close to two new friends, and I met one of my heroes. I attended a Yo-Yo Ma concert. My ME hasn’t gotten worse. The book isn’t done, but I haven’t given up working on it.
All the hardships of the last few years have not broken me. That’s what I want to remember, not all the failures and all the things I did not accomplish. Not the goals and milestones I did not reach. Not the losses.
I’ve done more than just survive. I am a different person, a better person (I hope). I hate things about my life, but not my life as a whole. If someone had told me in 2014 all the shit that was going to come down between January 2015 and January 2020, I a) would not have believe them and b) I would have noped right out the door. I never would have predicted that I could walk through all that and be ok.
I have no doubt that more fuckery awaits me. I love many people, and some of them are probably going to pass away before I do. I may never finish my book. There will be more hardship, and at the end I will die. Yet there will also be new people to meet and new things to experience. And you never know, I may actually finish the book and maybe you will get to read it.
So this year’s cake went in a different direction than previous years.
I don’t mean to tempt fate with this one. I want to take each year (each day) as it comes, and do my best with whatever happens next. I guess I’ve done ok so far.
Can I have a slice?
There’s plenty!
You’re wonderful…Thanks!
I could relate to your difficulties, the pluses and minuses. I love your humor, and the balance somehow that let’s you see all this, while struggling with what comes. So much is not in control, not what we wanted or believe we can handle—and then more challenges come in.
Personally, I do not know if I will be knocked down by the next wave! With worsening physical and cognitive difficulties, I live in a reality that others do not share, know or even want to know about; it is (therefore) a field of experience that is hard to communicate from, and to coordinate from, to connect with others. It would be hard for me at this stage of physical and cognitive breakdown anyway, but the discordancies in people’s different realities, the blanks and blocks, make it impossible to « dance » well together. I’m using dancing as a metaphor for the coordination one needs to take place among the people in one’s life. I think I am still sane enough to see this situation as a bit crazy!
So, among outer challenges, there is this interpersonal, « inter-reality » field of challenge too. Ironic that the more I lose brain capacity, the more « brilliant » I have to be to get a wrap on the whole thing.
You in your writing, Jennie, show repeatedly how one might encompass the whole thing, not only by trying to deal with challenges, but by seeing them—all of them— realistically too. Thank you for sharing your particular way. It helps accompany me in my own.
It is very hard- and SO frustrating- when there is a disconnect between our reality and the reality that others see. One thing that has helped me is to try different ways of communicating, and different ways of connecting with people. I hope you can find a way to coordinate that dance.
Cecelia (hope I’ve remembered the spelling in the few moments it took to start this comment!) ~
I really relate with what you’ve written. I’m someone who understands exactly how you feel.
Many {{{hugs}}} and best wishes for the new year.
@dSavannahCreate from dSavannahRambles
Thanks for sharing. I always love reading your posts!!
Love your sentiments .
Wishing you the very best in 2020 and beyond.
“We Got This”
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And don’t forget that you are MY hero. Marcie
Thank you, Marcie! That is so kind of you to say.
Wow. Sigh. Wow again. You must, by all means, have a great big piece of this! Savor it! Share it, freeze a few slices or squares so that you can have it on hand as an Rx. You got this, you certainly do! Happy New Year!
I definitely need to freeze what’s left of the cake, just to stop myself from eating it.
Jennie, you are the Indomitable! Even if there is no good news (there usually is some good news–Klimas and Broderick, Naviaux, and some others seem to be getting somewhere these days) you keep us informed. And meanwhile you still have young family members, and the cello, and just not getting worse counts as progress in our strange almost off-planet world.
I hope you have a long future ahead of you filled with some good things–I am now 86, and never know whether the latest symptom is just age or ME up to its tricks. But there are still things I enjoy, and your blogs are one of them, even if the taste is sometimes a little bitter–the fault of the ingredients, not the cook!
Happy 2020, and enjoy your cake!
Best wishes, Chris
Much love to you, Chris. Happy New Year!
I’m so sorry you’ve gone through all that! And yet, here you are – still, um, here, to tell the tale.
Us MEeps are the strongest ppl I know!
@dSavannahCreate from dSavannahRambles
We are!!!
Just a reminder that we have value for being. Our value is not in what we accomplish, although I do think that finding joys in the midst of this horrible illness is quite an accomplishment. 🙂
I agree 100%. That is also the hardest lesson from ME that I am still working on.
You got through the last five years and are still going. And you have advocated for us constantly and analyzed NIH data — to tell the truth about their funding or lack therein.
We all appreciate your dedication to the ME/CFS community and your hard work.
Hope this years is better for you.