I’m tired of writing about my MS.
The thing is, nothing is changing fast enough for me. I’m still struggling. I’m still waiting for the illusive switch to flip. It still refuses to budge. I’m still stumbling around holding on to what feels solid and hoping it can support me. I still occasionally find myself on the floor without intending to be there. It’s boring. It’s not interesting. It’s tedious. You know how it is! It bores you too.
This holiday vacation brought some awesome visitors into my life. Old friends. Friends who I don’t see very often but who I pick up with without missing a beat, remembering the familiar feeling of their smile, their funny jokes and their awesome stories as if we’d just seen each other last week – not last year or even ten years ago. Friends who were willing to come to me.
I used to love entertaining. I’d plan elaborate parties with every detail tended to. I’d make more food than people could eat. I’d have the perfect dishes, the perfect glasses for every cocktail and the perfect background music. The house would be spotless and perfectly arranged to be both artsy and comfortable. I would invite people to my home and impress them with how perfect everything was.
Now, when you come to my house chances are you’re bringing everything with you because I don’t have the energy to tend to those details myself. I still want to see you! But I’m a lot more OK with the rugs not being recently vacuumed or the table not perfectly set. Now I’m just happy to be able to get to the door to welcome you. Or maybe not even that! Maybe I’ve left the door open so you can just walk right in. That works even better.
This week my friends did just that. And it was awesome. I managed to make coffee and have a full water cooler. How is that for adjusted expectations! I managed to put on clean cozies (what I call my daily clothes that aren’t pajamas but kind of look like pajamas). I didn’t put on makeup. I barely touched my hair. None of it mattered even a little bit. My fabulous friends were still their fabulous selves but they were perfectly OK with this slightly more rumpled version of me.
For both visits I spent a good deal of time talking about my MS and what it means to my life now but something crazy happened while I was doing all of that talking about MS – I stopped feeling like my life was falling apart and started feeling like maybe it was just different and probably ok. I realized that most of my friends were in a simpler, easier mindset themselves which wasn’t the result of disease at all but merely the result of growing older and living life the way they wanted to and not the way other people expected them to live.
Some of my friends are also in the advertising business. Most of them I met years ago while in the very beginning of this crazy career journey, nearly thirty years ago when none of use knew or cared what a holding company was but would find ourselves eventually working for a few of them, working our way up into lofty positions our younger selves yearned for. Once we found ourselves in those positions we realized that we needed more. We needed to remember why we loved this work in the first place, the reasons that had nothing to do with titles or salaries or benefits or perceived power but were more about making something happen. The energy, the joy that came from creating something that wasn’t there before.
One of the things that struck me in the middle of these conversations was how much my 20-something self could have benefited from hearing things like this back then when all I could do was try so very hard to be what the world expected of me to be. How much my 30-year old self could have benefited from the perspective that the only people I needed to please were myself and the people I love. How much my 40-year old self would have felt reassured that I’d finally figured it out. I was finally on the right path.
In the middle of these chat sessions I couldn’t help but think how every young woman would benefit from having relationships, real relationships with their elders. I’m talking about the older women in their lives who might be able to shed some light on their struggle because we’ve seen it, lived it and survived it, too, so we know all of those expectations we heap on ourselves are mostly silly and likely not very useful. I found myself realizing the value of age and experience instead of feeling old and out of the loop. It felt really good to be around more women who were like me but not like me because a disease had forced them into a new game but because life had taught them a different and probably better way.
I blame this disease for a lot of things.
I blame it for turning my life upside down and inside out. I blame MS for taking away my vanity and and my desire to please as if those were good things I should hang on to instead of baggage that has always, always held me back. I blame it for stealing my perfect life and replacing it with something slower, quieter and boring. The truth is, I should probably thank MS for teaching me these lessons more quickly than I might have learned them on my own. Maybe I should thank MS for giving me the perspective I’ve lacked in so much of my life, perspective that would relieve me of so many ridiculous expectations allowing me to just be instead of always trying to be something better, something more, something I wasn’t.
Being around women I love who are also realizing these realities but who do not have a chronic disease helped me to see these realities more clearly. It helped me to remember that it was all going to change anyway because change is the one thing in life we can count on. When we don’t fight it so hard good things come out of it. When we flow instead of resist, we evolve into something our younger selves would have admired. Maybe if we flow instead of resist we start to understand that what’s out there is a game we are playing and not real life at all.
Anyway. I had some really nice visits with friends this past week and it really did my soul good. I have a few more visits planned this holiday week along with the usual holiday gatherings with my family that I really truly love. I’m not going to get all dolled up and fancy because it’s more important for me to be there and be comfortable than it is for me to be there and be glamorous when my body isn’t behaving as well as it should as it is doing this holiday season.
I’m going to spend this holiday week reveling in not fighting it. Any of it.
Now you and I both know by now that this incredible feeling of balanced Zen will elude me eventually. Sometime in the coming week my MS will give me a reason to focus on things I have no control over that bum me out, make me sad and harsh my vibe. I will struggle to drag my dead legs up the stairs and I will curse my stupid legs. I will look at Clara my fancy Danish rollator and curse her for becoming an unwelcome part of my living room decor instead of admiring her sleek lines that make her not your average walker. I will wake up in the morning with legs and feet I can’t feel at all and I will curse the inconvenient reality that I now have a life where occasional paralysis is part of the deal whether I like it or not.
I guess part of the whole balance thing is accepting out-of-balance when it rears its ugly head. Part of getting older and better is knowing that the shitty times don’t last forever and life is always changing. It’s much better to try and enjoy it, but when you forget to do that, it’s also better to be kind to yourself than to berate yourself for being ungrateful.
So merry, merry to all of you BBADdies who stick with me through the Zen and through the crazy. I hope whatever you celebrate gives you great joy this week. I hope you are surrounded by love, support and acceptance. I hope your dreams come true, especially the ones that can’t be put into a pretty package with a shiny bow. I hope your bodies cooperate during the holiday hustle and bustle but when they don’t, I hope you remember to rest and care for yourself.
And finally, thank you for being the most unexpected gift to come to me from my MS. Your experiences, comments, guidance and support lifts me up when nothing else will.
May your days be merry and bright.
Betsy Riley
December 24, 2018 3:39 pmSo glad you have achieved some peace and calm for the holidays.
bethnigro0212@gmail.com
December 27, 2018 11:13 pmI hope you found some for yourself too, Betsy! ❤️🎄❤️
Mike Strasheim
December 24, 2018 7:48 pmHey Beth,
It’s good to hear from you, I have been thinking about you. I second what Betsy says and wish everyone a Happy Holiday season.
Hang in there Beth we are all rooting for you.
bethnigro0212@gmail.com
December 25, 2018 9:15 amThanks Mike! Really appreciate your kind words. 💕
StephanieG.
December 25, 2018 3:46 amWith the chaos that I would be sure to put myself through in the next 24 hours, that was exactly what I needed to hear and be reminded of. Thank you so much Beth for taking the time to remind us all of those simple yet unbelievably complicated thoughts.
bethnigro0212@gmail.com
December 25, 2018 8:44 amYou are most welcome Stephanie. I hope the 24 hours ends up good and you get lots of rest time in the 24 hours after those. 😉💕
Ashley
December 25, 2018 6:02 am100 % agree with what you’ve written and I wish all of these things for you too. xx
bethnigro0212@gmail.com
December 25, 2018 8:43 amHappy holidays to you Ashley! ❤️
Debbie
December 25, 2018 1:30 pmBeautifully written! Thank you for putting a perspective on your disease. Mine differs (CRPS) but your words are a refreshing view of letting go of desired perfection so one can have a perfect day!
bethnigro0212@gmail.com
December 25, 2018 4:23 pmThank you so much, Debbie. That is so nice of you to say. I hope you give yourself a break this holiday. ❤️
Michelle
December 29, 2018 9:31 pmI hope you feel better really soon. Remember it’s a marathon! And it makes sense you feel so lousy with such low counts. I bet you’ll feel better sooner!
bethnigro0212@gmail.com
December 29, 2018 11:52 pmI sure hope you’re right. This whole marathon thing is as NOT fun as I always imagined it would be. 😉💕
Mindee
January 2, 2019 11:21 amYou inspire me! I have fibromyalgia… I am in school to be a Medical Assistant… Because of your brave words I push on… Thank you!!
bethnigro0212@gmail.com
January 2, 2019 11:56 amWow Mindee, that’s awesome of you to say. Best wishes to you as you push on!! 💕