My dad had 4 sisters that were very much a part of my childhood.

Aunt Gail had a glamorous career with the airlines. Rosemary and her husband Uncle Donald lived in the South Hills with their four children Kathy, Mark, Marsha and Tracy. I can remember staying overnight with Aunt Ro and Uncle Donald. Aunt Ro used to put out those puffy mint candies that were shaped like balls and were either light green or white with red stripes on them because she knew I loved them. I used to have a giant stuffed snake at their house that I would play with during sleep overs and I’d always tell them that the snake ate up all of the mints, not me. Aunt Patty was a beautician who used to own a bar. She used to bring us kids a box full of the 45s that she took out of the jukebox at the bar when they put new records in. That was how my sister, brother and me got exposed to music in many ways. Aunt Patti gave me more than one perm over the years and more than one kind of crappy hair cut but there was no pleasing teenage me when it came to my hair (some things never change!). Her boys Pepper and Ricky were like a comedy team. As we got older they made holidays bust-a-gut funny occasions with their constant jokes at all of our expense but in secret at the “kids” table on Christmas when none of us were actually kids anymore.

And then there was Aunt Joyce.

Aunt Joyce and Uncle Mike were my godparents, meaning they stood with my parents and me when I was baptized pledging to guide and support me should anything ever happen to my parents. I was a huge fan of my Godmother. She also worked for the airlines at some point in her life (as did my Uncle Mike, I think, it’s so hard to remember the details now so many years later). After that, she started a career as a travel agent traveling to exotic places herself. When she went to Mexico she brought us maracas and sombreros. Aunt Joyce was always going somewhere that sounded exotic to us kids who had never been out of Morningside further than a few jaunts to Lake Erie as kids (we thought it was the beach – like the real beach). That picture above is us kids, my dad (standing) next to Aunt Joyce and Uncle Mike (in red on the bench) on one of many pumpkin picking trips. And yes. I made those sweet ass custom bleached jeans myself but this story isn’t about my killer fashion skills.

After Aunt Joyce took a trip to Hawaii when I was a little girl she brought me back a real Hawaiian bikini like the hula girls wore (I mean, that’s what it was in my mind). I remember it was purple and had blue and yellow flowers on it. She also brought us those funny coconut heads that had scary faces on them. I became obsessed with all things Hawaii after that. The birthday dinner when we went to a dinner place in the North Hills called the Hukilau was one of my favorites. We saw a live Hawaiian show, drank virgin coladas from pineapples and ate pu pu platters and listened to Don Ho music. I mean, does it get better than that?

But her exotic travels were only part of the reason we kids used to call her the fun aunt. Not that our other aunts weren’t fun! They were fun too, but Aunt Joyce and Uncle Mike never had kids of their own so we felt like we were their honorary kids too.

When Aunt Joyce and Aunt Patti opened up a plaster craft store up the street from our Morningside home within walking distance it was like dying and going to heaven. There were what seemed to be a million cool doodads to paint up and use to decorate our shared bedroom or give as gifts. My mom and her friends were totally into this whole trend. I guess it was probably the late 70’s? I could find out exactly when by asking one of those cousins I mentioned above but the exact details don’t matter all that much as my memory of them do, for my purposes here. I remember painting little plaster mugs and frogs with big pink lips sitting on lily pads that could be purple because I wanted them to be. PJ’s Plaster Crafts was the site of lots and lots of fun and the birth place of some pretty freaking weird statues and oddities some of which are still in my mother’s house, like that creepy baby that my mother painted bronze but with eyes painted like normal eyes in white and brown. It still scares the shit out of me if I happen to walk into the upstairs room where creepy baby still lives. I mean…why? But why also doesn’t matter. What matters is that we hung out that little corner storefront and it was like a little land full of wonder for us kids.

Aunt Joyce and Uncle Mike had a houseboat on the Allegheny River here in Pittsburgh and us kids thought that was pretty freaking amazing. Going “down the boat” with Aunt Joyce and Uncle Mike was always good for an amazing day and even more so if we got to go through the locks. That was an event that required the tossing of ropes up to the lock master while the compartment filled up with water that allowed us to sail safely over the dams in the Allegheny. Going on that boat was so much fun! We kind of threw Aunt Joyce’s boat aside when our cool cousin Pepper got himself a mini-yacht that was faster and much cooler for teenagers than that very staid houseboat was. But that houseboat provided weekend fun on many gorgeous summer days and nights when our family would head down the boat and leave our cares on the shore.

My sister and I used to spend the night with Aunt Joyce at their house in Blackridge over near Wilkinsburg. For us, that was like the freaking suburbs. The houses in that area were much nicer and fancier than the houses in our neighborhood. Aunt Joyce’s house was white stucco and with lots of black wrought iron accents in a sort of Spanish style of architecture. You could tell Aunt Joyce and Uncle Mike didn’t have kids because they had white carpet and a formal living room. Most family parties took place in their finished basement where we could listen to cool music like Jim Croce, Neil Diamond and Harry Belafonte. We’d dance around with maracas singing every word to Bad Bad Leroy Brown and Gitchy Goomy. When we were little some of these evening parties would lead to sleep overs where my sister Gina and me would get to stay up late listening to music in the finished basement and draping ourselves with pieces of fabric called Qiana that Aunt Joyce bought for us to play with. Qiana was silk to us (even though it was actually nylon polyester) and we’d tie ourselves into silky evening wear and listen to Barbra Streisand and disco.

One year they got themselves an actual hot tub and of course the whole damn family had to get in that tub. There is photographic evidence. I will spare you but trust me…it’s hilarious. We kids were teenagers by that time and we had to take turns getting in the hot tub because the whole family couldn’t fit in there at once. Though we stuffed that tub with a few too many grown ass adults. My sister and I flew on our first airplane alone when my mom let us go to Florida with Aunt Joyce who was leading a tour group at Disney. That was the first of a couple of trips we went on with Aunt Joyce as teens. My family didn’t do things like go on fancy vacations. We wanted for very little as children but vacations on airplanes weren’t really in the cards for us since my dad worked construction through a labor union as a heavy equipment operator and was often laid off. We were very frugal but Aunt Joyce took us on little adventures we probably wouldn’t have had without her.

My point to all of this reminiscing is that Aunt Joyce and Uncle Mike were a big part of our lives well into our early adulthood. She got older, we all did, but she was always the fun aunt. In some ways, she showed me how to be a good aunt when it came time for me to play that role for my sister’s kids. At some point in our lives shortly after my Nana died, we all fell out of touch with Aunt Joyce and Uncle Mike. I wasn’t privy to the family drama that happened between my dad and his sisters with my Aunt Joyce but I know it had something to do with money. Most drama in Italian families can usually be traced back to money that ends with families members who no longer speak to each other. It’s kind of funny, really, because we weren’t the kind of family with the kind of money that should create a major family schism! But who knows? I never knew the details but around that time we just stopped seeing Aunt Joyce and Uncle Mike.

I don’t know if it was before or after that time when we learned that Aunt Joyce had MS. I have vague memories of her walking with a cane and being frustrated by it. I remember her being frustrated with her health as late in life as when she was at my wedding when I was 27. I must have known she had MS before the family break but I don’t remember the family talking about it much. I was an adult and off living my own life. We all just kind of grew apart and I’d think of Aunt Joyce every now and then when my dad’s side of the family would gather for some event or other and she’d be missing but I never went to visit her at her home after that family drama.

It haunts me.

And here’s me, actually being the fun aunt when my sister’s kids were still small.

In so many ways, I am the Aunt Joyce to my sister’s kids. Well for one thing, I’m their favorite aunt because they only had one other aunt on their father’s side and she wasn’t around much. I was very much around and in their lives from their birth. I played Aunt Bethy the performing seal at the swimming pool doing things I’d never do for any kids other than my sister’s kids. There were trips to the zoo and sleep overs and lot of family vacations that I was lucky enough to horn in on. I never married again after my husband Chuck died when we were both 30 and I chose not to have any kids. My sister’s kids were my kids in my mind. They were the only kids I needed! Being an aunt is one of the best things a person can be. You get to have all the fun, buy the cool gifts, look like a hero in lots of different ways and you never have to deal with them growing up and suddenly hating you or rolling their eyes because you’re suddenly not cool anymore. I am a great aunt. I am 100% confident in that statement. But I am not a great niece.

I always meant to go visit Aunt Joyce. I thought about her and wondered how she was but I’d get the updates from mutual family members about her health and it made me really sad to think of her as anything other than my fun aunt. I was busy living my life not having any real cares in the world (for the most part) and that visit never happened. When I was a teenager and I’d forget to stay in touch with Aunt Joyce for weeks on end because I was a stupid self-centered teen, she’d always end up calling me and asking why I didn’t call her. She told me all she wanted was a “hi call.” I didn’t have to have anything to say. I just had to call and say hi. I would make a note to remember to make more “hi calls” and promptly forgot again.

As I got older and Aunt Joyce’s condition got worse and she stopped being able to leave the house I always told myself I’d go see her some afternoon. I wasn’t a part of any silly family feud. I could have gone to see her. I should have gone to see her. But I didn’t. I could probably figure out a way to go see her now but one of my cousins who still sees Aunt Joyce advised me not to. My cousin explained that Aunt Joyce probably wouldn’t even know me by now because she’s kind of challenged now remembering things, and she’s in a really bad way by now being mostly confined to her bed. I think my cousin was probably trying to make me feel better about not going to see Aunt Joyce now that I have MS too. It would be really hard for me to do in a physical sense right now, number one, but even harder for me to see what’s become of her.

Aunt Joyce got diagnosed with MS before all of the wonderful treatments we have now. I don’t even know If she ever used a disease modifying therapy. These weren’t things we talked about in our family. And then we didn’t talk at all.

This isn’t a blog post about me blaming my horrible treatment of my godmother on me getting MS. I have a lot of twisted ideas in my head about why bad things happen to me. Twenty years of therapy have taught me that every one of those ideas is, indeed, crazy in a very literal sense. Cheryl, my precious therapist, never minced words when it came to some of my nuttier ideas around why bad things kept happening to me. I guess I’m writing about Aunt Joyce because I am afraid I’m becoming her. I also barely leave my house. I also get bummed out when my niece and nephews don’t come to see me or aren’t available when I need them. I used to go on their fun family vacations but I’ve skipped the last few because I wasn’t in traveling form.

I used to be the fun aunt.

Now I’m the sick aunt who can barely move her legs. It makes me sad. It makes me long for a time of normalcy where this constant worsening would let up for a hot minute so I could learn things like how to use my wheelchair more often or have a break in the action long enough for me to even WANT to leave my house more. Seeing what Thanksgiving did to me where all I had to do was show up and eat, threw me for a loop. I realized today that I haven’t been outside of my house since Thanksgiving. I’ve had visitors. I’ve not been home alone crying over my sad, sad life. I’ve been doing my best. I’ve even laughed a few times. I am not feeling sorry for myself tonight as much as I’m feeling very afraid.

See, I have my intrathecal baclofen test dose on Tuesday. My sister will deliver me to the hospital for 6AM when I will have a lumbar puncture so they can deliver the test dose and see if I qualify for the baclofen pump at all. My sister will hang out with me for the day as I work with a physical therapist to see if I’m a good candidate for the pump. I’m freaked out about another spinal tap because, duh, those things suck in pretty much every way but that’s nothing compared to my fear that I might not be a good candidate for the pump. If that happens I’m not sure what I do next. I guess I keep doing what I’m doing? I tell myself it’s OK that I can’t leave the house because the weather outside kind of sucks and I’m not missing much at all. But I will have a hard time boot strapping myself outta that outcome if that is my actual outcome.

I mean, I will. I know I will and you know I will. But I don’t really know tonight, sitting here writing this, how I will. My body is both rigid to the point of solid stone or spasming like one big Charlie horse that starts at my curling toes and ends at the stiff hip flexors that bend me over at the waist without my permission nearly every time I attempt to stand up. I took an amazing amount of muscle relaxers and anti-spasm meds just a couple of hours ago and it’s like I swallowed jelly beans. I walked laps around my first floor today just to keep my feet from turning purple and swelling but it wasn’t fun at all. The idea of trying to do that in the outside world right now is not at all appealing. I’m not even sure it’s even possible. I do still have those four steps between my front porch and my car, but I wouldn’t even attempt driving in this condition. And getting into someone else’s car still involves some form of ambulation. Ambulating ain’t easy right now folks. Sitting in a wheelchair isn’t fun right now either since my legs seize up and I get a searing pain in my ass that comes from not moving around enough.

I get a literal pain in the ass. Isn’t that just fucking poetic?

OK. That’s about enough of that. I’m going to be OK. Even if I am shitty goddaughter. If I don’t get that fucking pump I will get MORE ramps. I will get a van with a ramp for easy loading. I will do whatever has to be done to get myself back into the world outside. But don’t get it twisted. I probably won’t always want to do that even when I can. I finally just remembered that I actually like being in my house when it’s gross and cold outside and being a shitty goddaughter isn’t the worst thing a person can be. I mean, it’s not great. I’m not proud of myself or anything.

But history doesn’t always repeat itself. Not always, right?