And it isn’t just me.
So many people I know both with MS and without are in that not-quite-spring funk we all suffer from at this time of year.
My funk, however, is distinctly MS-driven and it’s been getting me down. I usually have pretty good coping skills, what with my expertise in tragedy-related personal recovery, yet this one keeps slapping me upside the head every time I turn around.
I cannot accept this one. I know I have no choice! MS is not optional once you are officially diagnosed. But the impact it has had on my life is getting me down lately and I’m finding it hard to write about it because I really don’t want to bring all of you down, too. There’s enough of that bringing each other down thing going on in this world these days. I don’t want to participate in it.
But I can’t write about unicorns and rainbows either because, dudes (if I can call you dudes without offense), I am deeply, darkly, and vividly depressed.
My life has changed into something I don’t recognize. I have turned into someone I don’t recognize not only in the way I look but even in the way I think. I am having thoughts that I just don’t have and I don’t like it. I find myself feeling hopeless. I find myself struggling not to just…I don’t even know what. Quit? Succumb to misery? None of these things appeals to me.
My last session with Cheryl, my beloved therapist, made me feel bad for HER. I was relentless. I had a comeback for every single constructive piece of guidance she was so expertly tossing my way, like so many lifelines, ignored and downright shunned. I evil laughed at Cheryl’s wise lifelines and it was mean. For every cognitive behavioral adjustment technique she threw at me, I batted that shit right out of the ballpark. Thank god she loves me!
Believe it will get better (I can’t). Don’t obsess over things you cannot control (I am unable to resist). You do hard things all of the time! (I do, but they’re easy things to me so they don’t count…this kind of hard thing I clearly suck at). Be gentle with yourself, you are in enough pain as it is (yeah, that’s probably true but I make such a handy, squishy punching bag it’s impossible for me to resist beating on me). Get out of your amygdala, you fool, and find your way to the mid-brain where things are OK! (Eff my amygdala and the horse it rode in on).
An article popped up on my Facebook feed from a dear friend who has had her share of adversity in life, and who happens to also be around my age. It hit me like a ton of bricks. The article was called “How to Build Resilience in Midlife,” from the New York Times.
A couple of things hit me all at once. This isn’t just a MS-thing for me, this horrible depression, it’s also a lady-of-a-certain-age thing. I’m having a MS-crisis and a full-blown mid-life crisis at the same time. Granted, I thought I’d already had my mid-life crisis in my extravagant shoe-buying, oh-so-slutty phase that was my 40’s. But I guess the thing about mid-life crisis kind of things is that it all depends on when your life might end, and I’m kind of hoping to make it to 102 so maybe this IS my actual mid-life?
Anyhow.
Cheryl’s gonna be pissed that I’d somehow listen to The New York Times but not to her, but I also think she would be proud. In fact, I know she is proud because I just sent her that link too and she responded, “I’m always proud of you.” Which is also nice to hear every now and then from someone you love so much.
I’ll let you all read the article for yourselves and take what you will from it, but one big thing that popped out at me was this:
“Any way you can reach out and help other people is a way of moving outside of yourself, and this is an important way to enhance your own strength,” said Dr. Southwick. “Part of resilience is taking responsibility for your life, and for creating a life that you consider meaningful and purposeful. It doesn’t have to be a big mission — it could be your family. As long as what you’re involved in has meaning to you, that can push you through all sorts of adversity.”
I guess that’s why I cling so desperately to my work. I feel useful there. I can do good things that create other good things in other people’s lives. I’m not gonna dwell on how much of that effort is really focused on making money for other entities that I will never see a penny of. I’m going to focus on the good things my work brings to people I do care about: my team, my family, causes I care a lot about, people I like to help in little ways.
It’s also why this blog has become a lifeline to me. That has something to do with this little gem from the same article:
“It’s about learning to recognize the explanatory story you tend to use in your life,” Dr. Southwick said. “Observe what you are saying to yourself and question it. It’s not easy. It takes practice.”
This blog is my way of trying to change my own explanatory story. It’s about re-framing my perspective and learning what my new story might be about. It’s also about sharing in a community that makes me feel supported, understood…just plain freaking SEEN. To be seen in this way, without having to explain a single thing, to have so many of you write to me or comment on a post, “I get it, I feel that way too.” That’s the other thing that keeps me going. Without that, I’d feel completely isolated even while surrounded by people who truly love me.
An old friend that I hadn’t seen in decades came to my sister’s house for Sunday dinner. It was so cool to see her! She and her son played a big part of my sister’s high school years and in our family overall during that time frame. I almost didn’t go to the dinner because I dreaded the inevitable. It happened ten minutes after I made my entrance.
“Hey Bethie! So tell me what you’ve been doing! What fun stuff do you have going on?”
Stuttering. Looking askance. “Um, not a whole lot Jane. I’ve been trying to learn how to live my life again since getting this MS diagnosis and going pretty steadily downhill ever since. Oh. I still work. But that’s about it.”
Silence.
I didn’t really say those exact words, but words to that general effect. And damn if that’s not a lot to swallow after not seeing someone for 30 or so years! It hit me like a ton of bricks.
I feel like a freak in every single normal social situation. Things as easy as “what’s up?” are so not easy for me anymore. Casual chats with colleagues over business dinners where people share their latest health craze, who’s on their March Madness bracket or what their new workout approach is or how they’re training for their next marathon or how their kids are doing in school or what kind of amazing vacations they are planning to take…I can’t relate to any of it. Not a single thing.
Unless your response to “What’s up?” sounds something like, “Oh I’m just learning how to live my life again in a world full of able bodied people when I am getting less able-bodied by the minute, that kind of thing,” there’s a pretty good chance I’m not going to be able to relate to you at all.
Old life things are so…irrelevant to me right now. I don’t like that fact but it’s a fact. I’m clinging to any kind of normal by the skin of my teeth and the fact is, recently, I’ve been forced to admit that none of this, what’s happening in my life right now these last two years or so, none of this is normal! Not even a little bit.
In learning how to re-write my own story, you are all here with me helping me to get it. That is something to feel optimistic about, I suppose. Embracing the complete mid-life uncertainty of it all is the goal. Remembering to be like the water. Remember not to cling too tightly to the things we love. Remembering that life is about how you respond not what actually happens…Writing about those things over and over again, in so many different words and ways, is kind of what I have left.
It’s what I do now. The only thing I do these days that doesn’t just piss me off. So thanks for being you, my readers and my tribe, because you’re helping me much more than I could ever help any of you.
Oh. I almost forgot. Wish me luck, would ya? I have yet another new business pitch meeting on Friday and I’m hoping like hell not to drive away from this one in tears again. It’s a goal, right?
Melissa
March 22, 2018 5:27 amI love reading your blog. I graduated nursing school last June, completed the hardest 3 years of my life( or so I thought). 6 days later I went blind in my right eye and was diagnosed with MS. Its been progressively getting worse. So far failed 2 medications. Your blogs definitely make me feel like im not alone, that someone understands. Ive even thought about doing some writing myself to help me work it all out.
bethnigro0212@gmail.com
March 22, 2018 10:01 amDO it!! Writing is cathartic. Even if you don’t share it with anyone. I’ve written in a journal for 30 years. Not only has it helped me through some shit lif situations but it also is nice to go back and read it occasionally and remember that I’ve gotten through hard stuff before. I tend to forget that. You are not alone. We are out here! I’m so glad you found something useful in my writing. Once I decided to write online, it started to worry me that I wasn’t putting anything positive into the world so I should probably consider stopping it altogether. I still struggle with it for that reason. But comments like yours keep me writing. So thank you!
Kathy lavoie
March 22, 2018 9:47 amSame here for this 69 year old lady in Montana trying to absorb retirement after 43 years hairdressing ! My attitude rather stinks!! Thanks for this blog!
bethnigro0212@gmail.com
March 22, 2018 10:03 amUgh that would be terrible! Being a hair dresser is such a big part of any stylist’s life. It’s social. It’s work. It’s fun! I can see how hard that would be to have in your rear view mirror instead of living it every day. Sending you big love from all the way across the country in Pittsburgh!
Heather Bigelow
March 22, 2018 10:33 pmI feel like you’re talking about me, life is so damn hard, only keeps getting harder
bethnigro0212@gmail.com
March 23, 2018 8:43 amI know Heather. Sometimes it gets to be a bit much. But having an outlet for talking about it really helps me. I always recommend journaling to people. I don’t think it’s possible to overstate the benefits of examining your own thinking. You’ll be surprised how much of it you can control. How much of your inner story is working against you. You write it out and it no longer has power. That’s been my experience. I wish you well. ❤️
Heather
March 25, 2018 8:15 amLiving (if you can call it that) with Lupus (SLE) it’s like you crawled in my head and said my thoughts! I try desperately not to contaminate those around me with the ick that lives in me but some days it’s just easier to hide and be me alone. It takes SUPER SPECIAL people to be let into my ick world n I don’t know that any of them were remotely ready for the reality that I live but a few have stuck it out and I have family that are there no matter what so I am
Blessed!
Moment by moment some days, other days are GREAT! Everyday I wake up ITS A GOOD DAY! Just smile until you feel it!
bethnigro0212@gmail.com
March 25, 2018 1:20 pmI’m working on it, Heather. It’s really good advice. I hope today is a good day for you and me both. Of course, I just woke up so it’s already been pretty awesome over here. 😉