“Lies are what the world lives on, and those who can face the challenge of the truth and build their lives to accord are finally not many, but the very few.” -Joseph Campbell
When I first went on daclizumab, I was euphoric. After going through six neurologists, and three MS medications, I finally found a brilliant neurologist who had uncovered an off-label medication that appeared to actually work.
My husband remained unmoved. He girded himself for every outcome, including the possibility that the medication would fail.
I shared his neutrality. At first. But then daclizumab surpassed my expectations. I had wanted nothing more than a medication that would prevent further exacerbations. What I got was a medication that did all that and more. Suddenly, I felt…able. I was able to hike and swim and lift weights. So I did. I pushed my suddenly able body to astonishing new limits. I rode the wave. I soared. My husband stood steadfast, like a beacon on the shore. He appreciated my toned body, but he didn’t expect it to last.
Indeed, it didn’t last.
No body lasts.
Years passed. My physical capabilities became less and less astonishing. I had very much enjoyed becoming super-fit. As my physical parameters kept shrinking, I kept pushing back. It was with great reluctance that I finally learned to stop wanting more of my body than it can deliver.
This week, my hard-won acceptance was put to the test. I would have to also learn to stop wanting more of my medication than it can deliver.
The moment of truth arrived on Tuesday. I finally received the news my husband has been girding against ever since I started taking daclizumab, shortly after Tysabri was pulled from the market in ‘05. In all that time, my MRI’s have always come back with no further lesions. I’ve been lucky.
I’ve kept up on the preliminary results of the daclizumab trials, and while they are impressive, I couldn’t help but notice there hasn’t been a 100% cessation of disease activity across the board. Something had to give.
Now finally, something has.
My latest MRI came back with one enhanced lesion.
Just one little lesion, located in the so-called “silent area.” My local neurologist doesn’t think one lesion would be worth attacking with steroids. (And I must say, I’m relieved.)
The news of the MRI didn’t shock me. It was almost a comfort. I already knew I wasn’t well. It actually felt good to have some confirmation that there was a reason, even if that reason was inconveniently screaming from the “silent area.”
Daclizumab has worked wonders for me. But it is what is. It’s a medication—the best I’ve ever taken. It is not a miracle. It is not a cure.
Daclizumab is fallible. Just like me. That doesn’t mean it’s a failure.
I’m glad I haven’t been afraid to hope. Hope did me no harm, after all. Yes, I was once euphoric, but with good reason. I’d been given a reprieve. When the facts changed, I didn’t break. I changed along with them.
It’s been a good ride.
Posts Tagged ‘neurologist’
“Lies are what the world lives on, and those who can face the challenge of the truth and build their lives to accord are finally not many, but the very few.” -Joseph Campbell
In the past few months, I’ve made the same complaint to every health care professional I meet. I report that my range of abilities is shrinking. That I don’t feel as fantastic as I used to back when I first went on daclizumab to treat the multiple sclerosis.
Year One on daclizumab, I was inspired to stretch myself to my physical limits. I was suddenly able to swim three hours a day. I could hike for an hour at a time. Every other day, I’d be off to the gym. Once a week, I’d attend an hour and half yoga class. Year One, I discovered I could stretch pretty far.
I am now in Year Four on daclizumab. I still stretch myself to my physical limits. But I tell you, those limits are not what they once were. Hike for an hour? I’m lucky to walk a few blocks. The funny thing is, I do feel lucky. But isn’t that also perverse? Shouldn’t I feel…outraged?
These days, if I decide to go to an hour and a half yoga class, that means I am implicitly deciding to write off any further physical activity for the remainder of my day. Which would be fine if I didn’t have a family. But I do have a family. My day is also my husband’s day, is also my son’s day, is also my dog’s day. My cat could care less if I walk or not, as long as I am still able pour his food. But the rest of my family is aversely affected if I overextend. They would probably prefer it if I would under-extend.
I wouldn’t want that. I’m not dead yet.
Every day becomes an experiment. I check in with my body more or less continually. If I don’t, my body checks in with me. More and more often, my body is saying, “Enough.” More and more often, I listen. I stop what I am doing. And I agree it is enough.
Is this acceptance? Or is it complacency?
I think there’s a difference. Acceptance is wonderful. But complacency is dangerous, particularly when you have a debilitating disease. You can mistake a medication for a cure. You can think you are doing enough, and by the time you find out you’re not, it’s too late.
Lately I’ve been wondering if daclizumab is doing enough.
I will whine to the nurses, or to the neurologists, “I feel like my physical range is shrinking.” I will speculate, “Maybe I don’t have Relapsing/Remitting MS anymore. Maybe I’m slipping into Secondary Progressive.”
No one can tell me. There’s no clear line to cross. What they can tell me is this: every MRI of my brain comes back showing no new lesions. How have I responded? I’ve asked to have an MRI taken of my spine. I want the whole story, even if it doesn’t have a happy ending. I don’t want to be living a lie. I want a clear answer to the question: why I do I feel I am in a long slow decline?
A very clear answer occurred to me just this afternoon. I was downtown, picking up a new pair of glasses, which happens to be my very first pair of bifocals. These glasses are totally and completely nerdy looking. It turns out my distance vision is -11.75. And all these years I thought the vision span only went to -10. It looks like the parameters for bad vision can stretch like the debt ceiling. Maybe the parameters for physical (dis)ability will stretch that way, too. And stretch. And stretch.
In the optician’s office, I thought of an explanation for this insidious phenomenon I’ve been experiencing. I am aging. That first year on daclizumab, I was still in my thirties. I’m not in my thirties any longer. Maybe the answer could be as simple as that.
This morning, my local neurologist sat me down after performing my annual exam. For the exam, she’d checked my reflexes, had me follow her fingers with my eyes, had me push against her (“you’re strong”), had me stand on one leg, then on the other, had me walk on tip-toe, walk on my heels, walk a (flawless) heel-to-toe.
She prefaced her conclusion by saying, “You might be unhappy to hear to this.” Naturally, I was all ears. “How long did you say you’ve been diagnosed with MS?”
“Sixteen years. I’ve had MS for over twenty years.”
“Over twenty years? And you can still swim laps for thirty minutes?”
“But not for thirty five.”
She nodded. “Not for thirty five. Swimming laps for thirty minutes is really good for someone who has had MS for over twenty years. Maybe you don’t want to hear this, maybe you want to do better, but you are doing very well.”
I corrected her assumption. “I do want to hear that. I’m so glad I’m doing well.”
I’d reported to her, earlier, that the parameters of my abilities are shrinking. I’d wondered aloud if I was transitioning into Secondary Progressive MS. “I can’t do as much as I used to. I can’t walk as long, or as fast. Every time I push myself, the MS pushes back.”
She’d agreed with my tentative assessment. “I often see this kind of gradual decline with people who have a mild form of MS.”
There was once a time when I would have bristled at that remark. I would have resented the suggestion that my nemesis, MS, could be described as “mild.” There was nothing mild about the pain I was experiencing right there in her office, which was why I had swung my aching leg up onto her examination table and used the table as a barre to stretch.
There was a time when I wasn’t willing to believe the MS could get any worse.
I know better, now.
My neurologist sees worse cases of MS every day. At least these days she can tell her patients that there are effective medications —medications like the one I’m on—in the research pipeline. There’s much more reason for hope than there was back when I was diagnosed.
And that is why today’s post is simply a post of gratitude.
I am very grateful.
Grateful for having a fine local neurologist.
Grateful for having insurance.
Grateful for having a $15 co-pay.
Grateful for being on an effective medication.
Grateful to be receiving that medication free of charge through an NIH study.
Grateful to have friends and family who support me. (It’s not too late, by the way, to support me in the MS Walk.)
Grateful to be able to swim 30 minutes of laps.
Grateful you visited this blog.
Grateful that yesterday, somebody searched Google for “Happiness with Multiple Sclerosis” and ended up on here on Ms. Lab Rat. What a hoot!
Am I happy with Multiple Sclerosis, the disease? Nope. I can’t say that I am. I hate this disease.
But am I happy, despite Multiple Sclerosis? You bet.
I welcome all seekers of happiness, with or without Multiple Sclerosis.
Thanks for visiting.
Why are my husband and I such fans of The Adjustment Bureau? Perhaps because this film tells our story.
It tells every great love story.
The conceit of a mediocre love story is that Fate brings lovers together. That’s just nonsense. Fate tears lovers apart.
The greatest love stories recognize this. Think Orpheus and Eurydice. Think Bonnie and Clyde.
David and Elise, the lovers of The Adjustment Bureau, join the ranks of the exceptional by choosing to give Fate a run for its money.
My husband and I recognize their struggle to stay together against all odds. We live that struggle every day.
The trouble begins with knowing too much.
David (Matt Damon) has the misfortune of peeking behind a curtain he wasn’t supposed to know existed; he witnesses his friend and associates having their minds wiped by the dapper, fedora-donning agents of Fate.
The lead agent, or angel, (John Slattery) is kind or cruel enough to explain to David that these poor saps are being “adjusted” so as not to get in the way of David fulfilling his destiny, which is to ascend politically all the way to the White House. The Presidency would fulfill David’s greatest ambition. There’s just one catch. David can only achieve this goal if he’s apart from Elise.
I, too, have been in the unfortunate position of learning my fate. My informants weren’t wearing fedoras. They were wearing white coats. And no, they weren’t angels. The first was a neurologist, who told me I had multiple sclerosis, which meant my central nervous system was self-destructing, and would most likely continue to do so until the day that I died. Bad news, huh? The second informant had worse news. She was my gynecologist. It was her opinion that I ought not have a child.
Just as David refuses to accept a fate without Elise in The Adjustment Bureau, I refused to accept a fate without a child.
David says to his lover, “I need you to trust me.”
I said to my husband, “I need to have a baby.”
I’m not going to spoil your enjoyment of The Adjustment Bureau by giving away Elise’s response to David’s plea.
I’ll just tell you how my husband responded to mine. He agreed to fathering our child, in full knowledge of my inevitable decline.
The lead agent urges David to abandon Elise. “If you truly love her, just walk away. If you choose to stay with her, it not only kills your dreams, it kills hers, too.”
I won’t tell you if David abandons Elise. I trust you can infer my husband did not abandon me. Like David, my husband faced the prospect of giving up his greatest ambition for love. My husband always wanted to become a professional writer. He has a talent for writing stories that reveal his literary influences, which include Samuel Beckett and Philip K. Dick, the author of the short story on which The Adjustment Bureau is based. My husband’s stories are not necessarily the sort that would attract great riches or great fame, but rather the sort that would attract a small fan base of passionate, uber-nerdy intellectuals. In other words, he has the sort of talent that wouldn’t necessarily pay the rent, and much less the health insurance. With a disabled wife, and a baby on the way, my husband chose to defer the dream of becoming a cult fiction writer, and embrace the reality of a steady job.
Did that mean he gave up?
We’ve never given up.
I’ve never given up defying the prognosis. I eventually found myself another neurologist, in another white coat, and she introduced me to a drug which appears to have halted any further decline. The child my gynecologist told me I’d be too disabled to raise is turning out to be healthy and strong. He’s fifteen now. Before we know it, he’ll be a grown man, out on his own. Once he’s grown, my husband might just find the time to write those crazy short stories again. With the life we’ve lived, his stories are bound to sound a little like Philip K. Dick. And more than a little like Beckett.
We can’t go on. We’ll go on.
No matter how gracefully I walk into a neurologist’s office for an evaluation, the dreaded heel-to-toe test invariably punctures my façade.
As soon as I place one heel directly in front of the other foot, I start to sway. My arms float up, like a gymnast…a gymnast on the Titanic. I tilt toward the left. I regain my balance…for one brief hopeful moment. I tilt toward the right. My legs start to buckle. Then twist.
It’s all very suspenseful.
Inside my atrophied little brain, I’m reminding myself of all these tricks I’ve been taught at yoga. I press into all four corners of my front foot. I root down into my tail-bone. I lengthen my spine. Oh yes. I breathe.
I lift my back foot. Gently swing it around my front foot. Start to set it down…
I tilt toward the right. A little too far. I break my fall…by breaking out of heel-to-toe.
Inside my atrophied little brain, I’m thinking that losing my balance is all my fault. I wasn’t…yogic enough. I didn’t make the right mind-body connection. Of course! Mind-body connection! Why didn’t I think of it sooner? What I should have done was visualize myself walking down the hallway. Visualization. That’s the ticket.
I request another try.
This request typically inspires a panic.
“Oh, no, no, no. That’s fine. You don’t have to do that one over. I’ve seen enough.” And I wind up feeling like an out-of-work actor who has just asked for a re-try on a crappy audition.
The first time I took the heel-to-toe test, I made a lame joke. “I guess my tightrope walking days are done.” The joke fell flat. My stand-up comedian days were dead-on-arrival. Fine. I don’t want to play the role of the wisecracking patient with multiple sclerosis. I don’t want to be in that sitcom. Or even on that channel. I’d rather be on the yoga channel, floating two feet above the gleaming wooden floor without even noticing, a tiny, enigmatic smile on my placid face.
Has my practice of yoga been based on unrealistic expectations? Or has my practice of yoga been the only reason I can balance at all? Without yoga, would I be in a wheelchair by now?
I cannot say. I don’t have a control group; a clone or a twin sister with multiple sclerosis who thinks yoga is a complete waste of time.
What I can say is that my expectations for my balance are consistently higher than my performance in the heel-to-toe test.
My performance in my normal daily routine can be fairly convincing. Contrary to what my blog posts may have you believe, I pass for a relatively fit healthy woman at least 90% of the time. In public. Before 8 pm. But still. I’ve got a good façade going. I’m fond of it. I don’t want that façade punctured. Which is why I don’t like the heel-to-toe test. Not one bit.
I never thought I could ever meet a person who could make my objections to the dreaded heel-to-toe test seem petty. That was before I met Dr. X.
I wasn’t supposed to be meeting Dr. X in the first place. My appointment was with Dr. Y. It so happened that Dr. Y was running behind, so she sent in a resident: a black man in a wheelchair. To see me: a white woman who felt irked every time she was asked to take the dreaded…never mind.
When Dr. X had me take the dreaded heel-to-toe test, I failed it, as usual. But this time, failing the heel-to-toe test felt fairly privileged. At least I wasn’t stuck in a wheelchair. Without a doubt, Dr. X would gladly trade places with me in a flash.
Or would he? Was Dr. X’s life really all that bad? Is mobility, or lack thereof, the decisive factor in anyone’s quality of life?
As we chatted, I came to see that Dr. X’s life was actually pretty good. He was nearly done with medical school. He was on the verge of a lucrative career. He had a job lined up for him in his home state, where he could live near his beloved family of origin. His upcoming move wasn’t all he was looking forward to; he was getting married in a few weeks. His honeymoon plans included snorkeling in the Caribbean.
My atrophied little brain thought it appropriate to mention a book I’d just read, The Body Has a Mind of Its Own. I enthused about the data showing that visualization could improve sports performance, and shared my plans to visualize walking down my staircase without using the banister.
Dr. X’s response? “Use the banister.”
I take it Dr. X doesn’t visualize leaping out of his wheelchair. Or passing heel-to-toe tests. Dr. X is more focused on what his brain and his body can actually do. I’ll be the first to concede, his brain and his body can do quite a lot. So much for visualization. Maybe there’s something to be said for looking around, and seeing the world clearly. The world is a beautiful place, from any perspective. I bet the world looks spectacularly beautiful while snorkeling in the Caribbean.