For me, the hardest thing about living with Multiple Sclerosis is figuring out if/when/how to tell someone that I have it.
Usually I don't say anything, because I'm fine. No pain, no symptoms or disabilities. I couldn't get handicapped parking if I wanted it.
My MS is no big deal.
How Quickly We Forget
Well, it's no big deal now. When I was diagnosed in July of 2002, lying in a hospital bed and hooked up to IV steroids, it was a nightmare of epic proportions. It scared the shit out of me. And my husband, Jeff. And my family, and the few friends in whom I confided.
I eventually recovered from that episode, and then got so much better that I forgot how sad and confusing my life was in that first post-diagnosis year.
Those early days came flooding back when I met a 28-year-old woman (let's call her "Maya") who was newly-diagnosed with MS. We shared diagnosis stories, and I found myself assuring her that:
- Your body gets used to the medication and you stop getting giant red welts at the injection site. Until then, Benadryl cream helps.
- My hair also fell out after I was hospitalized. It all grew back.
- You won't become instantly paralyzed if you dip your toe in a hot tub, take a hot shower or do a hard work out. Even if you feel some symptoms, they will most likely go away when you cool down.
- The scariest thing you can do is hang around online forums, because only sick people have enough time to be there. The rest of us are busy living our lives.
Maya had a great perspective relative to that last point, about all of the scary information available online. Through a support group, she met a lawyer in NYC who works 12 hour days in 4" heels. This lawyer said*, "Organizations like the Multiple Sclerosis Society are in the fund raising business. Who would donate money based on the story of someone who's totally fine? They're going to promote the stories of brave people in wheelchairs, not people like me."
Sure, I think I'm lucky, but also I suspect I'm pretty average. You just don't hear about the people like us who aren't struggling, because there's not as much story to tell!
*I'm totally paraphrasing! And the MS Society is AWESOME, everyone should give them money!
Sharing is Good
After lunch with my new friend, I kept thinking about how, back when I was in Maya's shoes, it was impossible for me to imagine feeling as well as I do now. I think I hoped I would be better, but mostly I was afraid.
The best thing that happened to me was a conversation with a woman who had lived with MS for a few years and said flatly, "Not everyone with MS winds up in a wheelchair and on disability. We have jobs, we go on hikes, go grocery shopping, and live full, happy lives."**
Even though her experience had no bearing on the progression of my disease, on bad days it kept me going to know that a fully able-bodied life was possible for someone with MS.
I was grateful to be able to return the cosmic favor, and say to someone who was struggling, "REALLY it's possible that you will be okay, because I'm okay, and I know other people who are also fine. Just hang in there!"
It seemed to help Maya to hear this, just like it helped me eight years ago.
That in turn made me realize that I'm finally ready to tell my story. Perhaps it will help someone else who is newly diagnosed with MS, surfing the internet for information and getting terrorized by all of the sad -- and yes, all too real -- stories of people who suffer horribly with MS.
If that's how you found this post, and your heart is racing from reading vivid descriptions of just how grim your symptoms can get (that stuff still gives me sweaty palms and hives!) I want you to know, there are a lot of ways your "journey with MS" can work out, including having it be Not A Big Deal.
There aren't any guarantees, but there are plenty of possibilities. Be brave enough to hope that you're one of the "lucky" ones, too.
**No disrespect meant to people in wheelchairs and on disability, who live full, complete lives, including grocery shopping and jobs -- but lets be real, the first thing that everyone thinks when they hear "You have MS," is "Shit, I'm going to wind up in a wheelchair!" No one wants to be disabled.
My Diagnosis Event
Here's how I was diagnosed:
In the early spring of 2002, my feet and legs got numb. And counter-intuitively, also incredibly painful, with throbbing pins and needles.
In May, my BFF Stefania hosted a birthday party for me (I was 33, a very common age for MS onset) at a restaurant with a belly dancer. I couldn't stand, sit, eat or get comfortable. I tried to get drunk. It didn't take away the pain.
I thought I had a pinched nerve. I took hot baths. I took Vicodin. I propped up my feet. It hurt to lie in bed, so I tried the floor. That also hurt.
I couldn't sleep, and I cried and cried in frustrated exhaustion.
Friends came to town for Gay Pride at the end of June. It was an unusually hot San Francisco summer day. Overheated and sweaty, in a crowd of mostly-naked men at Civic Center, I was brought to my knees when I tipped my head forward to swing my fake hair, and literally saw stars.
You know how when a cartoon character gets an electric shock, you see their skeleton? It was like that, except I saw it from the inside, and I saw every nerve ending instead of my bones, and those nerves were made of sparklers, like on the 4th of July.
Freaky. Also, ouch.
I went to my primary care doctor, who sent me for an MRI, which didn't show anything. The painful numbness and bizarre head-tipping-sparkles continued for the next few weeks. I also developed a strange tightness around my ribcage. I went back to the doctor, and after this second visit, where I sobbed through the examination, she sent me to a neurologist.
Saved by Dr. Nonchalant Neurologist
I saw the neurologist on a Friday afternoon. He asked me a couple of questions, then tapped my knee to test my reflexes. My leg went flying into the air, and I felt the impact reverberate through my body, up to my jaw, and behind my ears.
"You need to check into the hospital. I'll see if they can take you right now," he said matter-of-factly, and turned away to make a note on my chart.
"WHAT? NO! THERE'S NOTHING WRONG WITH ME!" I said.
"Does that seem like a normal reflex to you?" he asked, pointing at my spastic knee.
I had to admit, no, it was pretty messed up.
"What's wrong with me? Can you just give me some medicine?" I asked pleaded.
"You have transverse myelitis," he said. "We need to get you some steroids, and then you'll be fine."
Really. He diagnosed me with a major spinal condition and assured me of my recovery almost dismissively, based on a high kick and my vague description of "painful numbness".
"How long do I have be there?" I asked petulantly, expecting him to say overnight.
"Probably a week," he answered, not looking up from his notes.
I've never been really sick in my entire life. No broken bones, not a single trip to the emergency room. I catch bronchitis every the winter, and I had mono the summer between junior and senior year of High School. A little Nyquil, an afternoon nap, and I'm always back on my feet in a day or two.
To be told I had a mysterious illness so serious that I had to be hospitalized -- immediately and for a week! -- was impossible to process.
So I bargained.
I was adamant that I had to go home and get my husband, and some clothes. And my contacts case, and my glasses, and something to read. And my toothbrush, and...
Eventually he let me go home, with the promise that I would return to the hospital within a few hours.
What I really planned to do was find out WTF this "transverse myelitis" thing was so I could "prove" he was wrong. I raced home and Googled it, which was a HUGE mistake, because TM is a TERRIFYING, fast-progressing disease that leaves you paralyzed in like 24 hours, except in the 5% of cases which are "just" the onset of MS.
Ummmm, lucky me?
Worst. Patient. Ever.
I don't remember if Dr. Nonchalant Neurologist told me he was going to do a spinal tap that night, but that's what happened. It was my lowest moment, when I realized that this entire experience was way out of my control.
And by "lowest" I mean shamefully hysterical. I'm sure anyone passing by that room thought I was being tortured. There was no bravery, or noble suffering. Not a smidgen of grace. I was a wretched mess, wailing and clutching Jeff's hand as he watched the doctor stick a giant needle in my back, mute and helpless in his concern for me.
I sobbed (and moaned) for the entire week I was in the hospital.
In hindsight? The physical part wasn't even that bad. I was just exhausted and scared. But in high enough doses, those two things are more than enough to shatter you like a glass dropped on concrete.
Yeah, I Totally Have MS
They gave me steroids and did another MRI, with the magic imaging dye. This turned up a handful of plaques on my brain, and confirmed the lesions on my spine that Dr. Nonchalant Neurologist suspected.
Even though it was my first (and so far only) event, and my spinal tap came back "clean", everyone from the MRI lab tech, to the attending physician who wandered in and glanced at my chart, to my primary care doctor, to Dr. Nonchalant Neurologist agreed: I have Relapsing Remitting Multiple Sclerosis.
When you get diagnosed with a permanent, potentially crippling, blinding and mentally debilitating (plus to this day every medical professional I see asks if I "still" have control of my bowels and bladder) disease, you freak out.
Everything you read is about how bad it can be. And how to cope with being so sick.
There are all kinds of wacky diets, and supplements, and procedures involving bee stings. Plus the drastic and experimental medical treatments -- like chemotherapy for when nothing else works to hold the relapses at bay and you wake up paralyzed and blind.
And possibly incontinent.
There is also a surprisingly high volume of tips & tricks for getting insurance to pay for your wheelchair. Or scooter. Which seems to indicate a terrible and pressing need for a wheelchair.
The worst part is that no one can tell you why you got MS, or how the disease will progress, or if it will progress, or what your life will be like later in the day, never mind tomorrow or a year from now.
Everything is set up to remind you: THE MYSTERIOUS AND FEARSOME MULTIPLE SCLEROSIS CAN STRIKE YOU DOWN AT ANY TIME!
My (Perhaps Total?) Recovery
Except, you know, it hasn't. And it might not. Ever.
After I was released from the hospital, my symptoms ebbed, like the tide going out. One day I would feel the tingling and aching in my feet, then it was gone. Two days later it would be back, a bit less noticeable, but there. I'd be symptom-free for a week, then have a terrible day when it was all I could do to hobble around in slippers because my feet hurt so much.
One morning, ten months after my diagnosis, I was surprised to notice that my feet didn't hurt. I realized it had been almost three weeks since I'd been in pain. Gingerly I tipped my head forward. No sparklers.
That's when I knew I wasn't going to be sick forever with MS.
The Next 7+ Years
Like anything you live with day in and day out, after a while it's easy to forget to worry about MS.
I learned to give myself a shot of Copaxone every day. That becomes run-of-the-mill a lot faster than you'd imagine.
I started working out, and discovered that my symptoms stay more in check when I exercise. Sometimes I get the sparkler things after a hard run, but they go away in a few minutes.
My pack-a-day cigarette habit was eliminated, and I try to avoid preservatives as much as possible. I learned more about organic foods. I couldn't stay off the Diet Coke, because it's refreshing and delicious. And yes, bad for me.
I'm not perfect, but I'm healthier now than before my diagnosis. How's that for an unexpected benefit?
Eventually I stopped doing "The Check" every morning:
- Eyes open: Thank GOD, I'm not blind...today!
- Flex hands: Okay, I can feel all of my fingers.
- Rotate feet: Whew, they move! Also, no pain.
- Sit up: Excellent, no "invisible bondage strap" across my ribs, and hey, I can bend my legs!
- Head tip, done very cautiously: All clear!
Five years ago, in the middle of a meeting at work, the vision in my left eye went dark, like the aperture closing on a camera. I finished the day in a fog, positive this was finally the onset of an MS flare up. Some Excedrin and a good night's sleep later my vision was fine again. But the same thing happened again, exactly one month later.
True to my grace-free method of dealing with a health crisis, I panicked. Then I figured out that it was a migraine, caused by a change in my birth control pills. I switched meds, and the blind spot never came back.
Lesson learned: I will probably get sick again, at some point in my life. It might be with MS, but it's equally likely that it will be something completely unrelated.
You know, just like everyone else.
My Advice for the Newly Diagnosed
I'm not a doctor, I have no medical training, this is simply my perspective:
- Believe you're going to get better.
- Don't panic, but forgive yourself for freak out moments -- This IS a big deal. Or it could be. No one knows! Only a crazy person would be unmoved to learn that you have a mysterious chronic disease!
- Take the medicine -- what, you're squeamish about needles? Look at it this way: one injection a day vs. not being able to walk? Yeah, you can do the shot.
- Be as healthy as possible -- when you are recovered enough to move comfortably, find a way to exercise. And maybe those Twinkies didn't give you MS, but do you really want your healing body to have the extra work of trying to process all of those chemicals? They aren't good for anyone.
- Talk to people who have experience with MS, but avoid those scary online forums -- comparing notes helps normalize your situation. Just remember, only people who are so sick that they're not working have time to hang out online, complaining all day.
- Go live your life.
Happy Stories Should be Worth the Big Bucks, Too
I keep thinking about Maya's cool lawyer friend in NYC with the fabulous high heels and her comment about happy stories not raising money for the MS Society.
As you may know, the Multiple Sclerosis Society provides a wide spectrum of services -- and kindnesses -- to people when they need it most: when we are scared, confused, often in physical pain, and trying to navigate the bureaucracy of health insurance companies, or deal with a new medical dilemma. They also provide funding for the ground-breaking research that produces the medications that keep so many of us healthy today.
I think it would be fantastic if telling you my happy MS story could raise money for them. So let's do that!
Below is a donation widget, with the goal of raising $1,000. The money goes directly to the MS Society by way of FirstGiving, who takes 7.5% off the top for administrative purposes.
If you are inspired to donate, wonderful, and thank you.
Just as importantly, if you meet someone who is going through the first hard days/months/year of their diagnosis, please reassure them that there is hope. If it will help, tell them to swing over my way, I'll be happy to chat.
And thanks for reading my story. It really is good to share!