This picture is angry but cute. my feelings are decidedly not cute. I mean, I had a plan, y’all. I had a post brewing about how the combination of taking on a new course of physical therapy in the past few weeks coupled with a slew of doctor appointments (none for my MS oddly) with a topping of work weeks that have been looking like this recently:

…well.

It has me feeling like a frazzled mess. Aside from a quite successful outing on Friday the 13th with my new friend the EZ Light Cruiser when I decided a day full of meetings with our new CEO whom I’d never before met would be a terrific test for my new wheels that I had previously only tested in my first floor obstacle course, I felt overwhelmed with the realities of my day to day life these past few weeks. I was overwhelmed by the simple fact that not being able to use my legs properly nor readily use my new wheels in the outside world without assistance getting said wheels into and out of my car meant that on top of the stress of living an overly scheduled daily life without operational limbs there is the constant worry about where and when and how I would need to pee.

Yes. You read that right.

Peeing has become the new bane of my stupid existence. Whether or not I’ll be able to pee, get to a place where I can pee safely, a place that doesn’t require me to walk very far or up too many steps before I can pee, whether or not I’ve had too much water that day to risk a drive where I’d need to make it home before I have to pee (and up the steps into my home or able to lift my own legs over the 6” threshold that stands between me and my house once I’ve managed to make it to the porch)…let’s just say that urination may be my ruination.

I’ve yet to actually gamble and lose, in other words, pee myself in a public place or a private place that is not any of my loo options currently available in my home (this is also not something one should ever say let alone put in writing because tempting the pee gods is not wise people but I’m a daredevil like that). It’s a level of stress that I’m not sure I can adequately describe. On top of all of that (that schedule up there) I’m constantly worried about planning properly for my next need to pee. I won’t even get into the struggles associated with that other thing we all do in the bathroom! That stress takes the pee-related angst to an entirely different stratosphere. We don’t need to go there just now but trust me when I tell you that no new business pitch, client meeting or visit from visiting corporate dignitaries could ever approach the level of stress that whole, uh, function can cause. It’s just the truth.

But I was distracted by all of these very important issues, not to mention the myriad related issues (do I need to give in and install the fucking stairlift already so I can stop peeing in a damn bucket, should I sell this goddamn house and be DONE with it already, if I do that, where and how will I live, if I do that will I be able to overcome the unbearable level of heartbreak I will experience, and if I don’t do it will I live long enough to pay off the debt that will result from actually building this damn addition onto my home and do I even want to work that long in this condition where career-related stress fails to come anywhere near the level of accessible bathroom-related stress and whose fucking life is this anyway?)…it was something else entirely that distracted me.

I was distracted by the latest Instagram post from actress Selma Blair that gave me more things to stress about, mainly the reality that the simple emotions this post elicited proved beyond a shadow of a doubt the sneaking suspicion I’ve had throughout my entire lift, that very real suspicion that I might actually be a shitty human being. This Instagram post of joy and hope, you see, filled me with what can only be described as rage.

Selma was gifting one of her Alinker bikes to another MS’er who desperately needed it because since her treatment with HSCT she doesn’t need it anymore. Or she doesn’t need two of them anymore? The whole thing is kind of vague for me but that’s neither here nor there.

The point is that the hot news in the consumer media world is all about how Selma and her “aggressive” MS have been given a new lease on life since her groundbreaking treatment. She’s been spotted out walking around LA in cute outfits without use of any mobility aid at all. She’s posted on her own Instagram page her ability to stand up unaided, walk about unaided and even dive into her pool, once while wearing no bathing suit bottoms! It’s a goddamn medical miracle! MS’ers the world over should rejoice! Maybe this whole MS-mess isn’t really that hard after all! Maybe you go from a very public diagnosis, a famous red-carpet stroll with a fancy cane and then a harrowing mystery treatment where you actually go bald (how brave!) to sporting your brave bald head around LA in cute outfits on your own suddenly working two-good legs. From diagnosis in August of 2018 after struggling with symptoms for years to late summer 2019 (or thereabouts) when she came out to talk about her recovery process publicly, to today’s post about passing on the good fortune of the Alinker walking bike to another MS’er in need, Selma’s story has unfolded so fast it’s making my head spin.

Ok, none of this happened overnight at all. HSCT is indeed harrowing. It’s a complicated, dangerous treatment that comes with significant risk. Suffering for 6 or 7 years with undiagnosed symptoms while being a working single mother who happens to be an actor, then realizing that your job may be seriously impacted by your inability to dress yourself, walk and eventually to use your voice properly (Selma experienced a little known symptom called spasmodic dysphonia which she very publicly shined a light on with her interview with Robin Roberts) is terrifying. When you need help to take your kid out for a day of fun at Disney and you need a friend to wheel you around in a wheelchair, that is also a lot for a single mom to deal with. Even when the friend wheeling you around happens to be THE actual Buffy the Vampire Slayer, it still sucks. You want to be able to do those things yourself. You want to be confident that you can manage a very public career as an actor alongside being a single mother of a terrific kid all while dealing with a chronic, incurable illness. This isn’t what you thought your life would look like! Or feel like. The anxiety would be crippling to say nothing of the impact of the actual illness.

I don’t actually diminish any of what Selma Blair has gone through and will likely go through as time goes on with this absolute mother fucker of a disease. I’m a bad person but I’m not a wicked, horrible unfeeling bastard of a person! I am truly happy for her. I’m happy she got into the program that I didn’t. I’m glad it seems to be doing wonders for her. I’m thrilled that she is using her platform and her fame for bringing attention and understanding to this disease that started turning my life upside down around 2013 until my eventual diagnosis on December 1, 2015. On top of the spotlight on MS, I’m really happy that she seems to have a really amazing heart and a dedication to sharing her good fortune with others. I’m happy that when things weren’t all sunshine, roses and teddy bears that she was honest about it. Not many people are. We spend so much time trying to pass in the normal world, we sometimes forget that while appearances are definitely deceiving, we all go home eventually and deal with the reality MS has created for us.

I am filled with rage when I break my own rule and read the comments on anything on social media. This kind of seemingly overnight success is NOT the norm. It’s not what many of us will deal with and it’s not what many of us should expect. This is only one face of MS that is creating all of this hubbub in the MS community and in the world at large. Many, many people will struggle for years, decades in some cases, lifetimes in others. Many, many people won’t get the opportunity to even take on HSCT let alone have such an amazingly positive success story from it. Many have! I’ve read those stories too but even getting access to the treatment is difficult and in a lot of cases cost-prohibitive. For the time being, anyway, nobody new will be accepted into the program Selma used for her HSCT because Dr. Burt is off on a sabbatical.

Knowing how the social media world, and our culture in general, tends to gloss over important details of complicated stories involving scary chronic illness and seemingly “miracle” treatments it makes me see red that even one person will look at Selma’s story and believe that it should be seen as normal or even remotely possible with the availability and efficacy of HSCT over the long term. It’s just not that easy! Nothing ever is. But any attempt to bring that perspective to this story of overwhelmingly positive vibes gets slammed and slammed hard. How DARE you try to bring Selma down! How dare you try to clarify a point of confusion in the comments about what you should and shouldn’t expect from this treatment or who it is appropriate for! I saw one MS-advocate friend attempt to do so and get dragged by the angry hoards who wanted nothing but sunshine on Selma’s tale whether it might be leading the uninformed and overly optimistic astray or not. Go away, you negative nay-sayer! Only sunshine allowed over here.

Listen. I know better. I know better than to delve into the world of social media comment sections. It’s my own number one rule of social media use! NEVER read the comments on anything associated with politics, religion or social media chronic illness pages of celebrities with over a million followers. Never. It’s just asking for your soul to be sucked from your body through the internet. Especially don’t read the comments from people who have cured their MS by eating “clean,” or by eschewing western medicine or by any other self-help hoo-ha that probably wouldn’t stand up to longer than 30 minutes of light investigation. This disease isn’t called the “snowflake” disease for nothing! It’s different, sometimes better and sometimes so much worse, for every one of us.

Duplicating what someone else has done to “win” against their MS is a fool’s errand. I’ve fallen for it! Believe me. If it promised to help me feel even a tiny bit better, I’ve probably tried it. I didn’t fail because all of those people were patently full of shit. I failed because I have MY MS and they have theirs. Their MS behaves one way and mine its own way. It’s frustratingly true. None of us know why some people go off meds and seem to thrive and others follow all available FDA-approved medical protocols and also thrive. Or why others do both of those things and continue to decline. Nobody knows. Not you. Not me. Not the medical community! NOBODY. Not even my own frustrating and soon to be my ex-MS specialist The Great Scott himself! And that’s not why he is likely to soon be my ex-MS specialist either.

I’m likely going to part ways with TGS after my second round of Lemtrada in November not because his “biggest gun” has seemingly failed me. I got significantly worse after round 1 of Lemtrada. Why do round two then? I would give you my lengthy rationale but it wouldn’t matter. Once again, MS is a giant asshole. It’s gonna do what it’s gonna do no matter what I tell you mine is doing or why I’ve decided to do round 2 and then break up with one of the most frustrating men I’ve had the pleasure to be in a long-term relationship with. And let me tell you some straight truth right here, BBADdies, the list of frustrating long-term relationships I’ve been in with men over the last twenty years or so is nothing to sneeze at. I’m breaking up with him because he seems to have given up on me. I can endure many things in a bad relationship (ask any of them…they’re out there!). I might tend to hang around a tad too long, but I won’t hang around someone who has so obviously given up on me. Tell me it sucks. Tell me you’re frustrated and sad and that you wish things were different but we’ll do our best to make life as good as it can be in a crap situation! But tell me “best regards with your future endeavors” as a sign off to an email where I desperately ask for your help? Nah. I’m good son. Boy, bye. Thank u next. Or whatever the kid are saying these days. If I’m going to be in a hopeless situation with someone, I should at least get a little pat on the head with my hopeless prognosis.

Here are things that are universal about MS – and they’re not treatments or the course of any two people and their individual experiences with the disease.

You find yourself feeling kinship with people you’ve never met. While my MS and your MS may not be anything like each other, the ways they make us feel are probably eerily similar. We may not experience the same things but we probably have felt similar hopes, dreams, frustrations and horrors in response to individual very particular versions of this incredibly annoying snowflake disease. This blog has taught me that. I’ve made some amazing connections I’d frankly be lost without if not for the universal reactions we all have to very individual situations. We’re all beautiful, frustrating little snowflakes that have one very important thing in common: We can instantly make someone else feel less alone by reaching out and making a connection. We may be nothing alike! Yet all of those snowflakes can turn into some gorgeous sparkly drifts when they lay on top of and alongside each other.

The comments on my own social media posts? I read and respond to every single one. I am also grateful for every single one because even if we’re nothing alike right down to the condition of our central nervous systems or the behavior of our T’s and B’s – you’ve made me feel less alone. What’s more important than that?

Making the call to the motherfucking stairlift company probably is more important but Monday’s coming. I’m going to add making that call to next week’s calendar.