5 Ways Hope Can Suck When You Have MS
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| Make a wish and then prepare to get burned. |
The problem with hope and MS
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.
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| 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.
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| 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.
Not convinced?
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.”
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I don't know what we all do about hope, but I know we have to stay brave and keep fighting. Even if it eventually means wheelies in a wheel chair or scooter for a lot of us.
The only thing that gives me hope is knowing that I am more intelligent that MS. It's like a school bully. The bullly is not beaten by defiance and confrontatiiion but by stealth, planning and finding ways around our weaknesses.
Go to Paris every month. Check on the progress of repairs on the Notre Dame. I hope that you sing there again.
Also go to Rome, Florence, Cannes, etc.
As always, you speak my language. I have to keep remembering there’s no silver bullet. But I keep also remembering a winter about 7 years ago when I awoke one morning and got out of bed and just walked away from my walker. I feared to have anyone notice or mention it. I just kept walking and my husband finally put forearm crutches, walker and scooter in the truck and we pretended. After so many years of being SPMS and totally dependent on aides . . . WTF? It lasted for almost 3 months. I knew I still had MS. Little things reminded me. And then it was back to my MS normal. I’ve had very few MRIs and never one of neck and spine and no neuro ever discussed them with me. Knew they stopped using dye at some point. My days roll along pretty much the same. Once in awhile the spasticity goes bonkers and the pain is never well controlled. But, I’m still waking up glad to see a new day and determined to cope with what it brings. My life span is coming to an end. For if you, I do hope that you find peace, joy, love in spite of your life with MS.
Loved it. Like always. <3
Am I the only one confused about what SPMS means? If you’re still having new lesions isn’t that rrms.
I’ve been between neuros for the last few months and I’m finding it hard to justify finding a new one. I’ve been having the same conversations for the last 4 years that have led me nowhere. I’m enjoying the reduced aggravation.
I'm in New Zealand. Unfortunately we dònt seem to have anything available for SPMS (mine) and we dònt have a choice of nuro. My HOPE is something will come along…sòon
Best. Prescription. Ever.
Hi Mark, I can't explain this like a doctor, but it seems like the line between RRMS and SPMS isn't a clear divide. Many patients can experience relapses and inflammation while at the same time have worsening disease and progression.
Thank you for telling the story of SPMS without active lesions, I live there too. In the current climate of MS treatment options, it's the ugly step child that feels ignored. Rage on!
Deepak Chopra says hope is a sign of despair. I think he'd totally love to read what you just wrote. So honest. So appreciated!
Nice
Oh that's so interesting. I'm going to look this up to see what else he has to say. Thanks Julie.
Thanks for reading Amy. It really is time for researchers to start throwing some love our way.
Be brave is my mantra right now. Unless I'm on the ground. Then my mantra is: get up, get up, get up.
I am slowly progressing; have no new lesions and recently had optic neuritis where one eye looked forward; the other sideways. It was a paralysis of the third nerve in my eye.
A quick massive dose of steroids and 2weeks off using all remaining sick days I ‘recovered’.
“Everyone’s different”; “We’re not sure”; “Call if there are any changes”…
“Stay positive…”
Thank you so much for your blog. I've just progressed to walking (shuffling) with a walker and finding that hope and fear are blending into one – maybe despair is the best word. Trying to be thankful for what I have but so frightened of what is to come. I have an appointment at the MS Clinic in August, but not sure I want to hear the result.
First – Is that SERIOUSLY a picture of your doctor’s office?! Second – I’m confused (not too surprising) the US doc said that you SHOULD try the new med but the CAN doc said you couldn’t because you don’t qualify? Did your symptoms decrease on your trip home? Could taking the drug without qualifications cause you harm? Third – Are you taking down your website and just going with FB? So. Many. Questions…..
Oh wow. I'm happy to hear your ON improved. Vision loss is so scary.
Every now and then when I feel myself start to spiral, I ask myself if I am ok in this exact moment. It seems to help. Mostly.
I love this advice—am I ok in this exact moment?— it helps keep me from catastrophic thinking. Finding you and your followers, and all of your combined wisdom and experience is an amazing gift that has come to me this week. Thank you so much.
Welcome to the club you never wanted to be a part of. We’re happy you found us here.
There are risks with any drug and this one is no exception, and without inflammation/active disease, my Canadian doctor doesn't believe the risks warrant the (very low likelihood of) reward.
I'm not taking my site down. I always ask readers to follow my FB page in addition to the blog because I share this blog there but also curated MS-related content from other sites.
Thanks for reading and for commenting Christy.
ahem…as your mother, I suggest you make room in that closet for hatboxes too.
Ah…Dr. Williams. He's been my doc for 6 years. He and the IMSMP are awesome. They will try everything. I'm not really walking any more. 35 yrs. of MS and 13 or SPMS. But, even though I've given up on myself, he's never given up on me.
You dear really need to do HSCT in Mexico or Russia. Don’t let this stupid disease take your life! If there is even an ounce of “hope” to feel better isn’t that worth something? And btw that dr.’s office screams “RUN” or in our case hobble away as quickly as possible! (Or hit the throttle in some cases!)
Best of luck.
And emergency chocolate?
He def seems to care for his patients.
He does care. I have no active lesions and haven't for 11 years. I agreed to Ocrevus last year, after failing intrathecal methotrexate after 2+ years. Of course, Ocrevus did nothing for my MS, but he felt he had to offer me something. On my visit last month he, again, encouraged me to take Cellcept. I declined. These days, hope is just another four letter word. Even stem cells aren't really the miracle they are touted to be.
If I may interject… Mark as I understand (but I might be wrong), RRMS means enhancing lesions and flare ups, but the capacity to recover and plateau for a while. SPMS means you're transitioning to PPMS, which might take a couple of years or a couple of decades. One can have SPMS, not return to the baseline, plateau for some time, and then symptoms get worse and/or new symptoms emerge, after a flare up (with enhancing lesions), or simply get worse without a flare up (enhancing lesions not present). When one has PPMS there are no enhancing lesions, no recovery, no plateau intervals (or very short intervals), just progressive decline. However, some neurologists believe these distinctions do not mean anything (like my former neurologist); there is only pure MS. Yes, quite scary stuff! 🙁 I was first diagnosed as RRMS, but after 2 years quickly progressed to SPMS (with no enhancing lesions) and declining very, very fast (from EDSS to 3-3.5-6.5 in a year). HSCT in 2017 stopped my disease progression. I am not trying to sell anything here. MS is an insidious disease and, of course, experiences might vary. Much love to all who fight this terrible disease!
Funny! In my case, hope has also cost me a lot of money. Unnecessary money!
omg, tell me about it!
Watching Downton Abbey again, the Dowager says “hope is a tease designed to protect us from accepting reality”. That comment struck me so hard. But rather than resign myself, I work on tiny gains or tiny foothold – I keep exercising to preserve my legs, my walking. I drive at least once a week with my hand control kitted car to keep in practice, I write, I read, I play games to exercise my mind, I chat with friends. An I turn 65 this year, but I am also planning more reno or updates to my house. Nothing like hammers and saws to brighten my day, and planning better gardening this year.
So difficult to have hope. I’m in relapse and getting a 3 day steroid infusion starting Tuesday… because this pandemic the infusion site is closed until Tuesday…. ?. And prednisone. They say it will help. I hope it does….
oh, man. A few days can feel like a few weeks when you’re waiting for steroids. Hang in there and I hope you have good recovery from this relapse.
Sorry a few beers in. Booted from PT today! If this is better I’m screwed! Diag. PPMS Nov 2019. Wife has RRMS. Odds of us both having MS, about 5,000,000 to one!unless were related! NOT
Diagnosis of PPMS 3 years ago, ’cause’ I was caregiver to my husband for 12 years who lived with Alzheimer’s. Chose to ignore my symptoms he needed me more. He has passed and now………..
This post hit me very hard. I have had MS for over 35 years and I’m still walking. Not well, but still walking. I have always admired your style and making assistive devices look stylish and not looking like an old person. It breaks my heart that you have given up on hope. You’re still my role model.
I am scheduled to have my first MRI in 3 years because my neurologist suspects that I have probably gone from RRMS to SPMS. I am so scared for all the reasons you just talked about. ? Yet I’m still foolishly hoping for active lesions. How pathetic is that?