World MS day happens every year on May 30. As I look back over the last four years that such an event was even remotely relevant to me, I’ve struggled about what to post, how to commemorate it, what to say that might be remotely useful to this little corner of the MS community that hasn’t already been said a thousand times before. This year’s theme is about Connections:

The campaign tagline is ‘I Connect, We Connect’ and the campaign hashtag is #MSConnections.MS Connections challenges social barriers that leave people affected by MS feeling lonely and socially isolated. It is an opportunity to advocate for better service

Also, this year World MS Day happened to fall in the middle of yet another personal existential crisis centered around how much I’ve lost and how tired I am from trying to “come back” (again) and how sad I am because it’s a fucking perfect convertible day today and while I am fortunate enough to have a convertible in my driveway I am not fortunate enough to have legs reliable enough to actually drive it and this irritates me. You could say I was feeling a bit selfish and ungrateful and generally bitter on this World MS Day.

Connections! P’fft. Connect THIS, World MS Day, connect this.

World MS Day also happened to fall on a shower day this year, the one day of the week that I dread (yes, I said day of the “week”) because it will highlight all of the reasons why I feel sad, broken, useless and pathetic because I can’t shower alone. Sometimes I can barely make it out of the shower on my own two feet – hence why I require a shower audience. Showering also usually ruins me for the rest of the day because I’m both physically exhausted and emotionally spent.

What does this have to do with World MS Day, though? I mean, I’m always verbose but this is an awful long way around for me to tell you that personal connections, the ability to ask for help and the luck to have people in your life who are not only willing but enthusiastic in providing help is what forces me to refocus my day around gratitude and my sincere hope to inspire you, or someone out there just getting into this mess, to just do it already.

Ask someone who loves you to help. Make a new kind of connection than you had before. It will feel weird! I mean, some of the things we MS’ers need help with involve nudity and/or compromising positions but if you ask someone to help you in these very situations, you too, might find joy in the weekly shower that used to bring you sadness and sometimes actual tears.

Lately, shower day is my favorite day of the week. And that’s because of my friend Michele, my official Shower Buddy.

Michele has been my friend for most of my life, not just my adult life but my whole life because our moms grew up together. We grew up hanging out while our parents had grown up play dates that sometimes involved mixed drinks, smoking and playing cards at the dining room table for the adults and living room snacks and getting to stay up late to watch scary movies on Chiller Theater for us kids. We both have one sister (older) and one brother (younger) putting each of us in that illustrious middle child position known mostly for feeling neglected and thus being tiny little attention hounds as children and perhaps as adults, too.

If you know my friend Michele, you probably know her by another name that started when we were younger and somehow stuck. We call Michele, Foody.

Foody is what happens when an innocent young child, her older sister’s first born, Elisa, who idolized her Aunt Michele as most nieces do their aunts, heard her grandfather refer to Aunt Michele using a word she’d never heard before. Pap-pap called Aunt Michele a floozy – mainly because of Michele’s passion for color, wild clothing and a penchant for heavily accessorizing with glitter. Michele has also always had rather giant boobs, sometimes also covered in glitter. It might have been a specific outfit that caused her to gain the floozy comment from her awesome and hilarious father, it’s hard to remember the actual details but suffice to say that Elisa then asked her Pap-pap what a “foody” was…and thus Aunt Foody was born.

Foody is the life of every party and has been at the center of most of the parties in my life from the time I started remembering them. She was a bride’s maid in my very small wedding party. She’s been at my side for every big event I can remember and most of the small things like happy hours and dinners that turned into events after a few too many cocktails. We used to go on regular cruises with our small group of girlfriends where we all got treated like rock stars because Foody had high roller status. This meant upgrades to penthouse ship-top cabins with full domestic staff, private pools and decks. We also had epic family get togethers for things like the Fourth of July where Foody unloaded giant boxes full of backyard fireworks. These family fireworks sessions would inevitably lead to some ridiculous mishaps like some dangerous cannon backfiring which would lead to pants being peed well before MS made that a regular occurrence. We had some serious fun (the pics above are just a few examples).

Foody is legend in our families for lots of things, but most of them have less to do with actually being floozy (anymore) and more to do with the size of her heart more than the size of her boobs. The simple fact is if Foody can help you, she will. If she can help you in a grand, large, loud and enormous way, even better. When my mom fell and got hurt and was unable to help me shower anymore, Foody jumped in without a beat and offered her services. She is in the middle of moving to new house with all of the work, blood, sweat and tears that involves but she makes time every weekend to come over for shower time.

There is no alcohol involved in weekly shower time (I can’t stand up reliably even when I’m stone cold sober) but there is a lot of laughing. Preparing for getting in the shower involves gathering the many tools of the trade like multiple wash cloths for sitting on and gripping various smooth surfaces from various drawers and closets while I sit on my lame ass in the bathroom and wait.

Foody sets herself up on my bathroom rollator that has a comfy seat which faces my shower stool and bench where I sit, all naked and covered in rolls like a middle-aged crippled buddha, and we talk through most of my shower. We laugh and remember old times like that one time we had New Year’s eve in our comfy clothes because the weather was terrible in Pittsburgh and the roads were very slippery but we were determined to be festive in one way or another so we ended up somehow at the bar at a local Olive Garden (of all things) but braved the roads quickly after to get to our favorite local bar in time for the ball to drop where we were outfitted in festive crowns and noise makers before we even made it to our favorite high-top table.

We met for happy hour like it was our religion every Friday night at the same bar (The Fox Chapel Pizza Kitchen) at about the same time (around 4PM) for at least five years, at least as long as that particular bar was in business. Every Friday I’d text Foody to confirm our plans, a completely unnecessary text but I did it most Fridays anyway. My text said something like, “Confirming arrival at HH around 4PM. When will you be arriving?” Later one evening after a few flavored-vodka and soda drinks in tall glasses with maraschino cherries, Foody told me she asked her son Justin to read my text to her because she had been in the bathroom when it arrived and Justin said, “The Widow is saying she’s arriving at Hilton Head around 4PM…are you going to the beach tonight Mom?” And thus, every happy hour after that was always called Hilton Head.

Speaking of calling me The Widow, it was shorthand for my name for obvious reasons, but I used it for personal reasons, too. It was about me taking something back that seemed to make people shudder when they thought of me. By trying to normalize my widowhood I was attempting to make them face the fact that I was still the same, if slightly more sleazy, person whether they wanted to believe it or not. Whether I wanted to believe it or not, too. This also became another Foodyism when her then live-in boyfriend read a text to her from me aloud and misread my contact name as The Window, which I am still called to this day. It is definitely more festive than the Widow? Kind of.

That same then-live-in boyfriend, now husband, asked her today what’s really involved in helping The Window shower.

“I told him it was really nothing. Just being here in case you fell or needed help but really, it’s more like therapy. For both of us.” It is exactly that in so many ways but in many other it’s also so much more. Foody is one of those helpers that anticipates your every need. “It looks like you might trip on that rug, I’m getting rid of it.” Boom, it’s gone. “I put clean sheets on your bed. I know how much you like to be clean in clean sheets.” And when I glance in the bedroom before I ride the stairlift downstairs, I notice the sheets perfectly folded back, the top sheet put on upside down, just like I like it, so the print shows when it’s folded back and the corners tucked in tight (“Hospital corners,” she said because she knows I like to be tucked in tight). She also showed up today with a dozen of my favorite donuts that she special orders and then personally delivers for me and others in our family who love these particular crullers with white icing and chocolate sprinkles. She sometimes brings elaborate lunch or giant packages of paper products (“Bounty…I know you hate generic paper products.”).

Foody does so much more than watch me shower. She’s just there in every possible way – even in ways I don’t realize I need before she does. Hilton Head is a thing of the long-gone past but I miss girlfriends more than the massive quantities of Tito’s and soda. I miss just shooting the shit without any specific topic in mind. I miss laughing at something that isn’t myself but it’s also much more fun to laugh at yourself with another human who just gets it. I miss people who know me so well that I don’t need to explain how hard it is for me to look at three drawers full of expensive makeup in my dressing room vanity knowing most of it will have to get tossed before it ever makes it to my face.

When you’re diagnosed with a degenerative chronic illness that aggressively steals these little things from your daily life, it’s easy to convince yourself that you don’t need those little things anymore. I’m sure this is easy to do even if your MS isn’t an atypical, aggressive asshole like mine keeps reminding me it is. Suddenly having a disease can feel isolating. You might feel compelled to act OK even when you’re not. You might avoid asking for help from people you used to have good old normal-person fun with because not only don’t you want those people to not see you differently but you worry it will lead to them actually thinking of you differently, and you don’t want to see or think of yourself differently either.

There are so many reasons we might find ourselves not asking people to be there for us once you’re in the thick of the changes MS might force on you at any random time. I know. I’ve used all of them. But all of those reasons are utter bullshit. You need help. You need company. You need to feel something other than sick even while doing something only really sick people do, like showering in front of an audience. It took me a really long time to figure this out but lucky for newbies with MS I’m here to make every possible mistake for you before you have to make them for yourself.

Just kidding. We all probably have to learn these lessons for ourselves and in our own sweet, agonizingly slow time but on World MS Day I wanted to tell you how much I need my people. All of my people. I’ve always considered myself ridiculously fortunate to be surrounded by so many amazing family and friends but toss in a bastard of a chronic illness and it hits me so hard it can bring me to tears how fucking lucky I am to have these life-affirming connections.

Without these connections, I’d be screwed. Life would not feel worth living. Life would feel dark and gray and scary more often than it already does when you wake up some mornings with brand new symptoms or you go to bed at night alone and scared. Make those connections. Treasure the ones you already have. Welcome new ones that come seemingly out of the blue (or out of the blog, as the case may be).

Let people see you when you least want to be seen. It might be the only thing that actually helps.