Nick, Struggles

I’m positive the glass is half empty

Nick and I have a long-running debate in our house. It’s part of the oil-and-water, fire-and-ice dynamic we’ve functioned on for years.

His sunny-side-up brand of optimism strikes me as Pollyanna-ish and naive.

My glass-half-empty, pessimistic realistic approach to life grates on him.

But I might be close to winning this argument.

Hear me out. (And read this article in the New York Times about the power of negative thinking.)

Maybe sunshine and rainbows and silver linings aren’t all they are cracked up to be. I maintain that if you only think positive, you’ll be caught off guard when bad stuff does happen.

That’s not to say I dwell on the bad. But I do factor worst-case scenarios into all of my plans.

Some research is being conducted that shows positive thinking has its downsides. I’m not advocating that we swing the pendulum too far the other direction, either, although I tend to stay on the frowny-face side of the spectrum.

But positivity for the sake of it feels artificial and arbitrary, doesn’t it? Like forcing it doesn’t actually make the situation better and can distort reality to the point of ignoring serious problems. Sometimes mind doesn’t trump matter. That may sound defeatist, but I have some experience in this area.

Sometimes hot coals are stinging stones of pain.

Sometimes MS is a brooding cloud that has no silver lining.

Maybe sometimes negativity, as long as it isn’t depression, isn’t the worst thing.

I’m reading The Marriage Plot by Jeffrey Eugenides right now. Without giving too much away, there is a character who manic-depressive. He tries to explain that depression is a different beast from being depressed. I wish more people understood that.


Multiple sclerosis, Nick, Struggles, What was I thinking?

The year that was

2011 is a year I’d rather leave in the rear-view mirror. I think the world agrees with me. We should have known things were off to an inauspicious start when blackbirds fell dead from the sky on New Year’s Eve (of course, that just happened this year, too).

The bad had a way of eclipsing the good. The disasters, setbacks, politics, struggles. Enough already.

Well, almost enough. Let’s call this the coda and then wash our hands of it all.

The year that was:

• In January, I went to a concert. That was rough.

• In February, I considered a cane upgrade. Ultimately, I stuck with the standard-issue aluminum one I got in the hospital. I haven’t had to use it all that much.
• In March, I wrote about writing about two people in the MS community, Debbie and Phil.
• In April, we walked. I got involved. When I wasn’t working or enriching my mind in front of the TV, I joined the National Multiple Sclerosis Society. I am now part of the government relations committee and a regional marketing group. As a person living with MS, I feel that my voice needs to be heard. So many times this disease can make me feel helpless. And in these groups, I feel empowered. Oh, and I had a birthday, on the 99th anniversary of the Titantic sinking. And my day went about that well, too. Hey, there are ups and downs. This was a down.
• May-July. Not worth revisiting. Still too painful.
• In August, Nick and I celebrated 10 years together as a union! The Godkers. The Walkwins?
• In September, I had a different kind of anniversary, my year with MS.
• In October, I wrote about how my new therapy was going. (Not that well.)
• In November, I wrote a whopping three posts. Yes, I’m so prolific.
• In December, Nick graduated! We closed ranks this year, which certainly had upsides and downsides. We started watching an obscene amount of Netflix. And Hulu. And then Netflix, when it got back in our good graces. We became homebodies, more out of necessity than anything else. (That whole energy conservation thing.)
So that’s it. No more dwelling.
2012 is for better things: More writing, more activism. More photos. Probably (OK, definitely) more Netflix. More laughing. A lot more of that. More dancing. More cat videos. More being me, only better.


Multiple sclerosis, Nick, Uncategorized


Today is a big, huge day.

In fact, it’s probably the MOST IMPORTANT DAY OF THE YEAR, worthy of screaming it in all caps.

No, not the end of the Iraq war, although that is pretty significant.

Nick graduates from college today with a master’s degree. (Happy dance!)

To give you an idea of how momentous this is, consider that three years ago he was in a completely different career on a path that meant working nights and weekends for relatively meager pay ad infinitum.

He’s in a different field now, one that he has always loved but that was always just out of reach. It seems when you go down one path, you might lose your way before finding the right one again.

That doesn’t mean the first path was all too terrible, at least not in the beginning. He loved journalism, but we didn’t love what it did to us. There was a lot of sacrifice.

Consider that up until three years ago, we were on different schedules that had gotten so ridiculous we only really saw each other four waking hours a week. Period. No weekends together (no weekends at all).

We call those The Dark Days. We don’t like to talk about them.

At that point, we were questioning our sanity. Several times I was ready to throw in the towel. We fought in the time we did see each other.

During it all, MS kinda happened. Because apparently, someone was told we like challenges (maybe they saw us obsessing over the peg game at Cracker Barrel?).

He had school and work. I had my jobs and the house to take care of. There was no time for me to be sick.

We plowed through, realizing that now more than ever we needed each other to cope with my diagnosis.

Nick took the longview. He knew (or really, really hoped) that it would all lead up to this point, to today.

Consider that this weekend, we will be together, getting our house ready for company. We will probably watch Christmas movies and make some meal for the first time. We’ll probably drink hot chocolate and rake some leaves and sit on the couch and marvel that we really do have it good, considering.

We might even go to Bed, Bath, & Beyond, I don’t know. I don’t know if we’ll have enough time.

Congrats, my love. I always knew you had it in you (even when I acted differently). Thank you for being you, and for loving me.

Multiple sclerosis, Nick, Struggles

The need equation

I think one of the reasons Nick and I get along so famously is that we both lean on each other about the same. It certainly can’t hurt.

He brings me coffee and cleans the litterboxes and there should really be another sweet gesture in between those two.

And I … well, I make things pretty and can find stuff easily.

On a health level, he helps me with my shots, and I get him through low-blood-sugar episodes.

I know it won’t always be this way, this near-equality.

There’s this so-so movie, Love and Other Drugs, that rang true for me on a couple of levels, and particularly on this topic.

The backstory: Boy sells drugs (the legal kind). Boy meets girl. Girl has Parkinson’s. Boy falls for girl, and she him. Obstacles arise. Girl leaves boy. Boy chases after her. Cue credits over some banal, catchy music.

Her reluctance to continue the relationship is rooted in my biggest fear:

“I’m gonna need you more than you need me,” she despairs.

“That’s OK,” he says.

“It’s not fair,” she insists.

I see her point.

Sure, there are going to be times he is the stronger one. Those might be sustained.

I worry about putting so much on him, on overwhelming him with my neediness.

So far, he’s been every bit the wonderful caregiver.

But it’s not fair. Not for him, even if he’s doing this willingly.

Multiple sclerosis, Nick

Guest post from my better half

Nick graciously offered to write another guest post today, on our 10th wedding anniversary. I did not have to beg, bargain, cajole, reason, bribe or threaten with bodily harm. Honest! Also, wedding photo to be added as soon as I can find one. Oh, we were so young then!

When Jennifer was first diagnosed with MS, I’m not ashamed to admit, I didn’t know exactly what MS was.
I remember sitting in the emergency room listening to this very nice doctor with a very thick accent and not knowing how to react. I wasn’t sure whether Jennifer was getting a life sentence or a death sentence.

I was a student intern at Windstream who had no vacation, no sick time and no insurance should Jennifer have to quit working. I remember getting on the Internet that night in between packing clothes for Jennifer’s suddenly extended hospital stay. I also remember that the Internet really wasn’t as much help as I’d hoped it would be.

That’s because for all the things we know about MS, there’s way more we don’t.
And for someone who lives in black and white, there was this whole big gray area that I was going to have to get adjusted to.

Lo and behold here we are a year later and I still have way more questions than I do answers. But that gap is narrowing each day. It helps that I have a wife who embraces each day and each challenge with twice as much vigor as she did the last.

Jenn has gotten stronger and more educated about her disease. It helps me, as a juvenile diabetic, to think about her condition as something like my own. She takes medication to treat the symptoms of her disease. And just like the virus that has been attacking my pancreas since I was 18, the lesions on her brain aren’t going away any time soon.

In the past 12 months, Jenn has organized a team for the MS Walk, gotten involved in the MS Society and lobbied on its behalf at the state capitol. She’s even had to be there for a friend diagnosed with MS in a way that none of her friends could have when she found out a year ago – she could empathize, not just sympathize.

I worried about what the future held for us is those first few days as Jennifer lay in that hospital bed while I bounced between home, work and a very uncomfortable hospital room couch. As we celebrate our 10th anniversary today, though, I realize that it’s then future that should be worried about us.

I realize that the world is laid out before us. We will get everywhere we want to go, it just may take a little while longer. And the parking will be better when we get there.


Lovin’ summer

This week has blown by. I’ve wandered the sultry streets of Atlanta, marveled at dolphins, watched kids scamper through the fountain in Olympic Park, eaten overlooking Oakland Cemetery, and most importantly, successfully navigated MARTA.

There have been a couple of minor mishaps, but all has been resolved, thanks to the swell guy at the Apple Genius Bar. And baby powder has been a lifesaver, too.

I haven’t been taking too many photos, but here’s the trip so far:

Multiple sclerosis, Nick, Struggles

Mixed message

Good news! My MS treatment was working. (It doesn’t for all patients)

Bad news! I found out because I went off of it for a few weeks and am now having a flare-up.

Nah, I didn’t need my dominant hand for anything anyways. Or my right leg.

I did not want to feel this way so soon again.

For those who watch HIMYM, Marshall had a great line in last night’s episode. He called it a schoolyard bully of a year.

Sooo stealing that to describe my own craptastic last few months.

And hey, his storyline made a happy turn, so maybe ours will, too.

Multiple sclerosis, Nick, Struggles, Uncategorized


So it happened.

I became that girl.

The sad-sack TTC blogger who has nothing but baby on the brain. Writes ad nauseam about desperately wanting it to happen.

It’s like that woman gently weeping in the frozen foods section. Your heart goes out to her, you want to console her, but is it ever awkward.

I’m not saying I’ve made a miraculous comeback — but each day is a little brighter.

I’ve cried. A lot. In public, even.

Still glad I wrote about it (this is as cathartic as it gets for me). And it opened up a lot of dialogue that I wouldn’t have had otherwise. For that I am grateful.

And it made me realize just how common miscarriages/chemical pregnancies/lost months are.

So while I’m still grieving, I won’t dwell. This too shall pass.

In the meantime, I hope to write about new things. Nick and I are starting a new healthy-eating regimen. We have a few summer adventures planned. So food and pics are the order of the day!

Still, if you see me near the ice cream, please hand me a tissue.

Multiple sclerosis, Nick, Struggles

Crummy timing

If there is such a thing as a biological clock, then mine is defunct.

Because if it were working, surely it would have alerted me, say, five years ago to start thinking about having a family.

Instead, it waits until a most inopportune moment to finally chirp up.

Oh, you have MS now? You are on three Category C drugs? Perfect! Let’s get cracking on this baby thing.

Stupid clock.

While I tend to subscribe to the “better late than never” adage, it’s never so easy in practice.

I’ve gotten conflicting advice on whether to stay on my treatment. Two doctors have indicated that it would probably be OK to, but to stop the minute I find out I’m pregnant.

The drug nurse said that wasn’t such a hot idea — not enough studies have been done in humans (or animals, for that matter) to ensure that it will be safe going.

An MS friend was off of the same treatment four months before trying to conceive, and we have the same neurologist. She is now a mom.

The biggest risks on the treatment are miscarriages and preemies. The biggest risk off? MS rears its ugly head again. And every lesion, every exacerbation has the potential to cause permanent damage.

It’s a gamble. I knew that going in. With that in mind, I saw these as my options:

I stop treatment, open myself up to this disease and we go for it.

I stay on treatment, and live every month with the persistent worry that things will fall apart (I also subscribe to the idea of Murphy’s Law).

Neither one feels right.

I suppose there is a third option, and that is take the whole baby thing off the agenda entirely.

But that feels most wrong of all.