After a particularly dismissive appointment with my interim, now former, neurologist, where all I was sent away with was a you’re worse, there’s nothing we can do, see you in a year treatment plan, I found myself feeling like so many others with Secondary Progressive MS: sidelined, abandoned, hopeless.
I left the MS clinic that day with a desperate vibe, believing that even though nobody will look me in the eye and say it out loud, it’s only a matter of time before I can no longer use my legs at all, and why the fuck isn’t everyone (or anyone, for that matter), freaking out about it?
If my appointment hadn’t felt so rushed (aside from the 90 minutes I spent in the waiting room); if the clinic weren’t so under-resourced that it’s near impossible to be seen outside of annual visits; if the doctor had taken my symptoms seriously (as opposed to chalking them up to anxiety); and if his office hadn’t been such a fucking garbage fire, maybe I wouldn’t have felt like I needed a second opinion. Not to mention a new doctor.
Would you trust this hoarder with the health of your brain?
So I went to the Tisch Centre in New York, where some exciting, hopeful research is being done in the field of MS, to seek that second opinion. I kept my expectations low. At the very least I’d hear confirmation that there really isn’t anything that can be done.
When the NYC neuro recommended I try one of the drugs recently approved for progressive MS, I left his office with a hope I hadn’t felt in four years. I was excited. I felt light. I caught myself smiling at strangers instead of scowling at babies. Don’t get me wrong; I know this disease well enough not to hope for a cure or even substantial recovery. But the sliver of hope I was granted that day was intoxicating.
Well, fuck hope.
I took my fancy, big-city recommendation back to Canada – not to Dr. Paperwork; I’m done there. I took my recommendation back to a neurologist I hadn’t seen in three years; the doctor who initially diagnosed me and treated me for more than a decade – R-Dogg. I have to travel out of town to see him; The Banker must take time off work to get my non-driving ass there (the reason I’d left in the first place), but I knew I’d be getting better care than what my current clinic is able to provide.
R-Dogg and his staff welcomed me back to their practice where the office hasn’t changed. It felt weird to be there, but good. Safe. I trust this man. I trust his whole team. But you already know what happens next; or else, why would I be writing this.
R-Dogg has been giving me the shittiest news of my life since 2001. Why should this day be any different?
I have SPMS, but I don’t have active SPMS. I don’t have new or enhancing lesions. No enhancing lesions means no treatment. Even if I feel like MS is actively trying to ruin me 24 hours a day, no MRI activity makes my lazy, insidious disease quantifiably less susceptible – some would say completely insusceptible – to therapies, therapies that carry risks. I knew all these depressing af facts going in, but my shiny, hope-shilling, freedom-loving American doctor has his reasons for believing more treatment is worth a shot, and that was good enough for me.
High on hope or just high?
But it wasn’t good enough for my maple-glazed, gunless, cautious Canadian doctor who told me to trust the science. Not my emotions.
R-Dogg doesn’t write prescriptions for hope.
I sucked the tears back into my eyes as I left my new/old neurologist’s office feeling like I’d been punched in the stomach. I can’t be mad at him for taking away my hope. I never should have hitched my wagon to hope in the first place.
I mean, why do we have such a good opinion of hope anyway? How is hope an actual virtue when hope is literally the desire for something and the expectation of receiving it. In what world is hope not a douchebag? Hope sounds like a toddler melting down because you won’t let her feed hamburger buns to the cat.
Allow me to break down the problem with hope and MS:
Hope can be a real downer
Hope can set us up for incredibly cruel disappointment. Not I’m bummed because everyone’s wearing pink now, and that was my thing kind of disappointment. When hope is repeatedly dashed, hope can turn into hopelessness, even despair.
Hoping against hope that my MS simply goes away sets up a cycle of grief when, year after year, it laughs at my restraining order, and continues to get worse.
Hope doesn’t prepare us for negative outcomes
If you don’t save for retirement because you hope to win the lottery, duh, that’s irrational. We call that out. We know it’s unhealthy to put our heads in the sand and hope for the best without preparing for reality, yet we encourage this kind of thinking in sick people.
When we’re diagnosed, everyone tells us to have hope, when what we really need is to be encouraged to be brave, to nurture strength. We need doctors and loved ones to acknowledge that what we’re up against is going to be hard. Really hard.
When we accept that the world is unfair, that suffering is part of the human experience, we can focus on what’s realistically modifiable. Hoping that my body will heal can prevent me from cultivating the courage to cope with what happens if it doesn’t.
Hope can make us do stupid things
Being drunk on hope can cloud our judgement. The more we have hope because we’re desperate, the more likely we are to undergo risky treatments, spend money we don’t have, even travel to sketchy places for un-approved procedures. I’m not judging. I’ve done all these things. The other end of this spectrum is to hope that things will work out without intervention. This can lead to neglecting the importance of diet and exercise, maybe taking up smoking, or ghosting the dentist, or even refusing medical treatments that could help.
Hope can be a barrier to acceptance
Whether it’s faith in God or faith in pharma, we’re taught from diagnosis that the only acceptable way to proceed is to believe we will get better. We’re told to be warriors, to fight against fate, as if by refusing to accept our diagnosis we will somehow be able to reverse it.
It’s hard to have this kind of hope without actively hating your life. It takes more courage to accept an unjust future than to deny one. It takes more courage to love your body, broken though it may feel, than to rage against it.
Clinging to outcomes over which I have no control keeps me longing for the way things were. It keeps me feeling bitter about the present. It keeps me fearful of the future.
Hope and fear are kissing cousins
Hope and fear are just informed guesses about what comes next. But there are no guarantees in the unknowable future.
I spend zero seconds of my day hoping I don’t get hit by the proverbial bus. I don’t have to hope the murder-bus doesn’t get me, because I just expect it won’t. However, I spend all my waking hours (and some of my sleeping ones) hoping MS doesn’t destroy me because it’s the thing I’m most afraid of.
Hope is not the absence of fear. It is the manifestation of it.
What am I supposed to do now? They say you have nothing if you don’t have hope.
Letting go of hope doesn’t mean feeling hopeless. The key is to hope wisely. Par exemple: I hope I go to Paris every year for the rest of my life. That’s good hope. I hope you have a nice day. Another fine example. I hope I never turn into my mother is the kind of self-deluding hope that would be better served by making space in my closet for giant hats and used wrapping paper, while looking forward to the day I get buzzed off of half a glass of zinfandel.
Letting go of hope and accepting the way things are doesn’t mean being complacent with your health either. Like Derrick Jensen (Endgame) writes, “When hope dies, action begins”. For me, letting go of hope means being even more committed to diet and physio, because for now, they’re all I’ve got.
Letting go of hope means living in the present and finding gratitude for the way things are despite the difficulties. My hopes aren’t high; in fact, the thing I seem to always be hoping for the hardest is to just stay the same, to not get any worse. In some ways, the thing I’m hoping for is the thing I already have.
And if a cure does come along it won’t matter if I hoped for it or not.
This is the part of the blog where I kiss you good-bye and ask you to follow me here. But just as your tragic heroine (moi) was about to proofread and hit Publish, the phone rang. It was R-Dogg with a third act plot twist. He’d like me to repeat my MRI. Turns out Dr. Paperwork wasn’t monitoring my thoracic spine – the place where my worst lesions live. If there are changes there, we will consider treatment after all.
Right before we hung up R-Dogg said, and I kid you not, “So, there is hope.”