Perhaps you’ve noticed a certain lack of words coming from these pages as of late. Maybe you haven’t and you’re also sick and tired of reading about how tired I am of being both sick and tired. I wouldn’t blame you.

This not writing thing started as me telling myself I needed a little social media break over the holidays. I didn’t want to take pictures of my first family holiday in my new home – I wanted to be in it, living it, soaking it up. This is just the kind of quaint little fiction I create for myself when I’m avoiding something. Me? Not taking pictures of my mom’s fabulous spread and the amazing cookies my niece and my sister whipped up and the general gorgeousness that was my decorated home – my first tree in 18 years (the age of my oldest cat when he died a little while back)? This wasn’t usual at all. I don’t even know where my phone was for all of the festivities that took place here over the course of Christmas Eve and Christmas Day. I didn’t miss it. But it wasn’t for some lofty reason like wanting to live in the moment (how judgey is that anyway?).

I’ve been avoiding social media and writing in general because I’m so sick and tired of writing about how overwhelmed, traumatized and generally shitty I’ve been feeling for so long now, I can’t quite put my finger on when it started.

I mean, of course I’ve written about it here ad nauseum in my quirky sometimes darkly humorous prose but those posts only feel semi-honest. The real thing has been much darker lately. So dark, in fact, that I’m going to stop writing about it now because the truth is, it doesn’t help me. How’s that for a truth bomb? Writing isn’t helping me so I don’t want to do it. I don’t want to write about me.

I’m sick of me. I’m sick to death of me. Maybe you are too? So I’ve decided to write about something else.

I’ve decided to do a series of posts about the people in my life both physically and virtually (via the socials) for whom I am grateful beyond words. People who help me keep going even when I honestly don’t want to. These people pick me up and dribble wisdom on me like honey from the chronic illness gods. Sometimes they’re aware of how much they help me because we are real friends, not just people I follow on social media, but sometimes they are people who have no idea who I am because they ARE people I follow on social media. Crazy. Strangers help me without knowing it on the daily.

I call this the first in a series in my title above, but in fact there was already a first when I wrote about my friend Meggie a little while back. I asked you to put your collective energy toward sending light to Meggie who is having a really tough time and you did it. It was overwhelmingly kind that so many of you prayed, sent vibes and healing energy – whatever it is you do to send good intention out into the world – and that’s what Meg needs and you did it. She still needs it, by the by, so keep that love flowing. But when I wrote about Meggie I didn’t see it as an exercise in gratitude. I saw it as a desperate plea for that bitch of a Universe to maybe help someone I love who really needs that help. It was about Meggie but it was also about me. I needed something. I wanted something. I wrote about it and it made me feel better. It might also have made Meggie feel the love, too, but I felt like I needed her to catch a break so badly I couldn’t bear it for one more second. Fire up the blog fingers! I still love that post, don’t get it twisted. Meg is pure light and she deserves all that love and more. But I want this writing to not be about me for reasons I’ve already stated so that’s what I’m going to do. We’ll see how much energy I have once I get started.

So here we go! I want to tell you about my friend Alicia.

No. That is not an actual pic of Alicia up there because she’d probably kill me if I posted a pic of her and she deserves her privacy so this will be a first name only post, but that picture reminds me of Alicia because that person looks like a badass that can do just about anything useful one might need doing and that, frankly, is the kind of person Alicia is.

Her list of skills is a bit mind boggling. She can fix anything, rig up a solution to any handi-girl problem one could think up and explain the most complicated scientific concepts to the lay person (in this case me) while fixing things that are really high up on the ceiling because Alicia is also very very tall, a full six foot four inches tall. This makes me very jealous. I’ve always wanted to be tall. Alicia also has MS. I found out about that in the most bizarre way possible – but I’m getting ahead of myself.

How we met is the most random of stories and a great example of how there is serendipity in this world that is quite mind blowing when you stop to think about it for even a second.

Alicia is from Seattle and was a research scientist in the areas of immunology, infectious disease, and vaccines. Her sister’s husband has a PhD and specializes in nanochemistry so he got a job here in Pittsburgh at PPG. Alicia is a single mother of three kids. She moved to Pittsburgh for her kids to be near cousins and because it’s cheaper. The cost of living here in the ‘burgh is a huge allure (or at least it used to be). Alicia had to give up her career in the lab because of contracting allergic asthma so affording her house in Seattle wasn’t so easy. Before all of that super cool science-y stuff, Alicia was a vet tech. This becomes relevant, I promise.

A couple of years into my diagnosis with MS around March of 2017,  I happened to notice a post on our local region Facebook page where a mom was looking to buy a used iPad that she needed so her youngest child who was 4 at the time could use it for speech therapy. Some of the tools he needed to use on the iPad required a newer model than they had and Alicia was hoping to buy one a little cheaper by getting it used. I was sitting in my house looking at two iPads at that exact moment thinking about how I spend money so stupidly because I didn’t need a new iPad since I barely used the one I had. It seemed like a sign from the Universe that this woman’s kid should have that new iPad that I didn’t need and shouldn’t have purchased in the first damn place.

A Messenger conversation began around me wanting to give Alicia the excess iPad that would do her kid a thousand times more good than it was doing me by sitting around not being used. In this chat, I learned that Alicia lived about ten minutes from me and I offered to drive by and give her the iPad. I explained it might take me a minute or so to get to the car because I was having a crappy leg day as a result of my relatively new diagnosis of MS. Wait! Here is our actual Messenger exchange (I’m in blue):

About a month later I got this message from Alicia:

We’ve stayed in various degrees of contact ever since. My new house is exactly seven minutes from Alicia’s house where she still lives with her three kids and one bonus kid who doesn’t “belong” to her but who she is helping by giving him a safe place to live. Because that’s the kind of shit Alicia just does.

She’s on disability now. She spends her time caring for the kiddies and generally doing amazing things like putting in a new bathroom in her house BY HERSELF, or snaking sewer lines or cooking the best Pad See Ew in Southwestern PA. She raises chickens (the exact number of chickens permitted by our pain-in-the ass township and that’s all I’m going to say about the quantity of Alicia’s chickens). Alicia tends to her plot of land where she lives in a very sweet little house with her offspring (and bonus offspring) and a virtual menagerie of animals.

Alicia will quite literally drop whatever she is doing, hop in her car and come to save me. She did it in my old house and she’s been doing it here too. Back in the old house she used to bring her daughter along to my house for kitty time (I had four at the time and Alicia had none). During one of these visits, her daughter made me an entire set of tiny origami animals made from two inch square pieces of colored paper that I kept until they fell apart.

Alicia’s brain is legendary. That’s not hyperbole. She explains the intricacies of monoclonal antibody treatments with the patience of a saint. She explained the difference between Rituxan and Ocrevus long before The Great Scott (my MS specialist) did. Hint: it’s the difference between mouse and human molecules.

Alicia knows things. Important things. Things about my MS I am still trying to learn 6 years later. She explained to me the critical notion of medication hoarding early on in our friendship. Medication hoarding means never tossing a med, especially the giant 90 day supply bottles, because you never know when some rando insurance change is going to straight fuck your life up and a chronically ill girl has to always be prepared. Or someone you know who is also chronically ill who might get straight up fucked over by their insurance company and need that drug you aren’t taking anymore. Crips help crips. Alicia taught me that too.

Alicia is a mad woman with a tool belt. She can fix just about anything and that includes the toilet seats on both of my accessible toilets when they needed reinforcing after installation of the Tushy bidet. She, of course, also installed the Tushys and totally got creative with me and duct tape when the Tushy made my toilet seat all slide-y. She never questioned once why a toilet seat that isn’t slip proof would be a problem when one has MS with extreme spasticity and can’t lift her ass off the toilet seat in any kind of twisting motion that would be easy peasy for a healthy Tushy user. (Also…if you don’t have a Tushy yet, and you are as obsessed as I am with having the worlds cleanest post-poop butt around, you need to get one stat. The Tushy is s game changer. Trust me on this.)

Alicia always has at least one roll of Dycem in her possession at all times. And now so do I. That stuff is a Crip chick’s multitasking miracle substance. Trust this. Then go by some on Amazon.

Let’s also be clear. I’m not the only person Alicia helps. She is a one woman saver-of-the-days for many, many people in her world.

Today, for example, she was heading over to a friend’s house to administer antibiotics to her friend’s sick chicken. Because of course she was. I found this out when I texted Alicia this morning to ask her for yet more help.

“Chicken is fixed up. Gave it a shot of penicillin. Hopefully got all the infection out, it was a fucking mess…poor thing. I’ll probably check on it Monday and change dressing and give another shot. I can do whatever you need. Is it time sensitive?”

Well that is a big question Alicia. And it kind of depends on how important it is to you to get a shower at the very least once a week. I know. Somewhere out there someone is gagging at the mere idea of showering once a week but for me getting that one shower in is a miracle and nothing less. My caregiver friend Lena usually helps me with my shower every Sunday. Lena is visiting family in Venezuela until January 6, though, so I’ve had to get creative. This has involved my wonderful and patient occupational therapist, Jody. But Jody took the week off between Christmas and new year’s so it’s been beyond my week showering window.

My mom is an angel person who helps me do a sponge bath when stuff like this happens so I can feel clean even if water hasn’t touched my body. But there’s a wrinkle in the sponge bath solution and that is my hair. I’m too weeks beyond needing a hair cut to even count. For anyone who sports a short hair epic fade like mine, you know this isn’t a good situation. My hair is just…it’s just not good. My hair is that picture you post of “tell me your stylist has Covid without telling me your stylist has Covid.” Being almost 8 weeks out beyond regular hair cut time when you have hair that is as short as mine creates some crazy ass hair situations. My mom tried to sponge bathe my crazy hair and while it was a valiant effort, it was less than effective. I woke up that morning feeling desperate for water to touch my hair and my body.

I wheeled around my giant accessible shower countless times last night around 2am trying to determine how I could somehow get myself in and out of the shower without killing myself or drowning Idris Elba my wheelchair. I was up until 2:45am trying to envision myself into the shower without perishing. The problem refused to be solved. I was going into a fresh new year three days past my shower due date. I was going to start back to work on Monday as a real live dirt pig.

I felt desperate. And fresh out of people I can ask to pop by and shower with me. But who could I ask?? Who was going to be the “lucky” person to enter the shower with me and delouse my person? Who was gonna help me stand up and sit down while wet and butt ass naked in the shower this time?

Who would be strong enough to lift my feet off of the wet shower floor when either left leg or right leg refuses to move when my brain tells it to? Alicia can fix anything. But can she fix me?

I texted her asking if she’d be ok doing something potentially weird involving seeing me naked, touching my naked self in a completely non-sexual way and getting me in and out of the shower in one piece. I hit “send” and held my breath while those dreaded three gray dots told me Alicia was typing her reply

“I’d be totally ok. Bodies are bodies and super am not hung up or feel weird about it. I’d shave for you if your hands weren’t steady, except mine also aren’t. I give zero fucks. I have a friend that I barely know, tbh. And she got an IUD and it was giving her hell, and the doc couldn’t get her an appt for weeks. I told her how to safely remove herself, but she couldn’t find the strings. She thought she was just incompetent, which I doubted, but I offered to help her if she was comfortable with that and quite literally went and put my finger up her vag and spent a couple minutes being sure – those strings were GONE 😂”

How did I know she’d feel this way? How did I know there was literally nothing i could ask Alicia to do for me that she wouldn’t do? Or in her words, “There’s literally no help I’m not ok with giving, unless it’s criminal with high likelihood of being caught. Lollllll but I don’t get caught.” Color me not surprised.

Even more, I usually get 100% in a twist before a shower because it’s the scariest thing I do. I have terrible visions of my chunky naked body laying on the floor of my fancy accessible bathroom. The getting from the shower bench back into the wheelchair moment of the shower is terrifically scary and usually requires fast reaction times, fancy foot work and unusual strength on my shower helper’s part. Alicia checks all of those boxes plus the box that says “knows MS and how crazy unpredictable it is and what to do when weird shit starts happening without being told.”

After our first epic shower experience she casually said to me, “You know, I could do this with you every Sunday. It wouldn’t be hard for me and I like helping you plus we get to hang out AND  there’s the bonus of if the worst happens and you end up on the shower floor I could just pick you up and plop you back in the chair, no problem.”

I just looked at her, completely stunned. That first shower with Alicia was the first time ever that I’ve felt more than 50% safe taking a shower. It was such an enormous relief and such a weirdly unexpected experience I wasn’t quite sure how to react. I wanted to cry but not from sadness. I wanted to hug Alicia but we were both partially naked and soaking wet and hello? Covid. How am I so fortunate that these angels in person form keep finding me? How is it even possible?

We agreed on a weekly time for our shower meeting and we agreed to disagree on the topic of whether or not she’d be able to pick me up and plop me back in the chair if I fell in the shower. We’ve been doing the Sunday shower for a few weeks now and it’s been nothing short of awesome. Also a little bit weird? But if that doesn’t describe the paradox of finding the amazing people in the middle of the shit storm that is having a chronic illness, I don’t know what those words would be. Awesome and a little bit weird. Perfect.

Not completely off topic would be how Alicia got to prove she could just pick me up and plop me in my chair just a few days later.

I wasn’t soaking wet? But I was dead weight after a long week. I’d started back to work full time after the long holiday break and my stress levels were off the charts. My pump needed adjusting a few times within the week to help keep my knees bending as knees should so that I could transfer safely off of the toilet. Pump adjustments always set me into a spin because as soon as the controller is done doing it’s thing and the new setting is locked in, the 24 to 36 hours of uncertainty begins when I have to wait and see if the adjustment was enough (my knees bend) but not too much (I’m so weak I can’t bear weight at all).

I had my regularly scheduled appointment on Thursday evening for a massage and stretching session with Michael my massage therapist – yet another real-life angel in my life.

Michael and I had been doing our sessions on my bed because I haven’t had the energy for all of the transferring required for using the raised physical therapy mat in the lower level of my house because it involves two wheelchairs, a stairlift, one rollator and one old-school walker. The bed had been working out well the last two times we met so we headed to the bedroom to do our session as usual. Afterwards, Michael said he could tell I was exhausted before we even began. By the time I was flipped back over after stretching my quads and attempted to stand up from the side of my bed, I couldn’t do it. No way, no how. We tried many different creative problem solving options for getting me back into my wheelchair but nothing was working. Michael is a strong person, no doubt, but getting me back into that chair without me ending up on the floor in the condition I suddenly found myself in wasn’t something I was willing to ask him to do alone. Michael would do anything to help me but I was needing some extra reassurance after 20 minutes of trying and failing to stand up.

“I know who can help us,” I said. I called Alicia.

It took Alicia a little longer to get here than usual because of course it had suddenly started snowing and the roads were bad between my house and hers. When she walked into my bedroom and instantly assessed the situation as she usually does her reaction was, “OK. You’re going to put your arms around my neck and I’m going to lift you and place you into the chair while Michael stands behind the chair so it doesn’t slide out from under you while I’m trying to set you in it.” I can’t even begin to tell you how much I doubted the possibility of this plan working. I am not a small woman. I was dead weight. I was also desperate. We followed directions and got me back into my chair. I still consider it an actual miracle that Alicia was able to get me off of that bed. I consider it a bigger miracle that she then decided to stay with me for the rest of the weekend to make sure I was alright (I wasn’t alright…I needed the baby sitting because my pump adjustment still wasn’t allowing my knees to bend).

“I can’t let you do that, ” I said. “What about the kids and the foster kittens and the animals and YOUR life? I can’t let you do that,” I said.

“My parents have been dying to spend a weekend with the kids so that’s not a problem. My mom knows how to care for the fosters and the dogs. And for me? It will be really nice to have a little staycation at your house without kids, fosters, animals and my real life to deal with. You’d be doing ME a favor.”

Add to the list of her ridiculous number of talents the ability to lie through her teeth without blinking.

She stayed with me Thursday night through Sunday night. She wouldn’t have it any other way. I needed her, she saw no other option. I was gob smacked by gratitude. Whilst baby sitting me and keeping me off of the ground, Alicia also installed a door knob that has been sitting on a table in my hallway forever. She hung my headboard in my bedroom that had been sitting in the box it arrived in for over a month. She replaced various light bulbs too high up for me to even attempt changing (without a ladder I might add). She helped me warm up my meals in the microwave and cleaned up after me. She rearranged my entire kitchen to get it ready for the contractors who were scheduled to arrive later that week to start my kitchen renovation. She left a few times to go home and check on children, parents and creatures of all species and then came back with a container of the fluffiest scrambled eggs a girl could hope for from fresh eggs laid that day by her totally-legal number of chickens. “You can eat these for breakfast they re-heat easily.”

I do what I can to help Alicia in kind, but you have to realize by now that my ability to hit the “send payment” button on Venmo never feels like remotely enough. When I ask her how she can continue to be my savior both from a home repair perspective AND as the smartest and most able not-official-caregiver without just not answering the phone when caller ID shows it’s me, she said, “Listen, there’s a lot in this for me. It’s the only serotonin boost that works for me. It’s the ability to feel useful when my spotted brain ruined my ability to do the things I loved doing. Helping you is better than any anti-depressant I’m on. They don’t do shit a lot of the time but this? This helps ME. So stop being so thankful. We’re helping each other.”

Just…wow.

Alicia’s brain is still pretty magnificent even though she doesn’t use it in a research lab anymore. She is one of the smartest people I know, if not THE smartest person I know. Her usual response to my many household challenges is, “There’s got to be an engineering solution. There is almost always an engineering solution I just need to figure it out.” And 9 times out of ten, she does figure it out. Alicia makes the Rubik’s cube of disabled life look like a cake walk to solve. I am beyond grateful that a random Facebook exchange put us into each other’s lives when I had no idea where this MS/disability journey would take me. She is a walking talking miracle in my life.

Neither of us is big on the whole god thing so when I say “Thank god for you” she reminds me that she is an ordained minister in the Church of the Flying Spaghetti Monster. She got ordained on the internet a while ago in order to marry some friends.

So now I just say, “Thank FSM for you, Alicia.” And we laugh and laugh.