Category Archives: Marriage

When the going gets tough…

April is Parkinson’s Awareness Month, and this is a disease that impacts me daily. About a decade ago, my husband was diagnosed with PD at the age of 44. This hit us out of the blue—there was no family history to foreshadow the condition and we were attributing his symptoms to something very mundane—a pinched nerve, carpal tunnel syndrome, etc.

I could write a lot about my husband and how terrifically he copes with the hand he’s been dealt… The man never complains or feels sorry for himself whereas I’m pretty sure that, in his shoes, I’d be the hostess of a 10-year pity party.

There are lots of nuances to his symptoms, but the upshot is this: His day is ruled by his medications and whether or not they are working. We sometimes refer to it as a Jekyll and Hyde existence but that doesn’t seem quite appropriate—while it’s “good” when his meds are “on” and “bad” when his meds are “off,” the whole Jekyll/Hyde analogy makes it sound like he turns evil, when he actually handles his off times with as much grace as any human being could muster.

Recently, he came up with another analogy—when his meds are off, he’s wooden and can’t move and when they are on he becomes “a real boy.” This seems more appropriate, and the transformation of how my husband comes to life when his medication kicks in is not unlike Pinocchio.

But I won’t presume to tell his story and instead will share my own. This is what I’ve learned having Parkinson’s “by proxy”…

1) There isn’t much I can control. I have a control-freak nature. And while having children was my first lesson in learning the limits of what I can control, dealing with my husband’s Parkinson’s is like being in graduate school. I find myself reciting the Serenity Prayer a lot. It’s a good prayer. I’m hoping one of these days it will sink in.

“I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.”       –Mother Teresa

2) There’s a method to His madness. While I think the adage, “God doesn’t give you more than you can handle” has some truth in it, I also think He likes pushing you right up against your limits at times. For example, I’m not the stop-and-smell-the-roses type. For a Midwesterner, I’ve got a rather intense East Coast approach to life and Parkinson’s is a condition that could try the patience of the most easy-going Southerner.

When I would think of my husband or myself dealing with illness, I imagined being struck with a more common condition, like cancer. This is a horrible, awful thing to deal with—no doubt about it. However, in many cases you can “battle” cancer, and if you’re lucky, you can win. Trust me, I’m not wishing my husband had cancer instead of Parkinson’s, but I sometimes think that fighting cancer would be more in line with my temperament. I like to think I would bravely don my armor and be at his side to help slay the dragons. But Parkinson’s isn’t a dragon—it’s the mosquito in the room whose buzzing keeps you up all night and slowly drives you insane.

There’s a David Byrne song with some slightly blasphemous lyrics that captures my perspective on this, “Green grass grows around the backyard shithouse. And that is where the sweetest flowers bloom. We are flowers growin’ in God’s garden, and that is why he spreads the shit around.”

Now, I don’t believe in a spiteful God, but I do think He is aware that my Serenity Garden is a bit overrun with weeds–and that my husband’s illness is part of a larger plan intended to help fertilize the flowers.

3) God provides help where you least expect it. Despite the negative lessons I’ve learned about myself, I’ve also learned that I’m not completely on my own. While testing me big time on the patience front, God has also sent some unlikely angels to support me through this process. People who accept me despite the aforementioned shortcomings. I’m very thankful for these people in my life.

Diamond or basketcase? The jury is still out...

Diamond or basketcase? The jury is still out…

4) We all need to cut each other some slack. There’s one aspect of my lack of patience that I’ll accept, and that is my growing intolerance of hatred and judgment and negativity. Life can be tough. But most of us are doing the best we can, and we all need to remember that. When it comes to disability awareness, I’m probably on the “more enlightened” end of the spectrum having worked for two organizations serving people with disabilities and consequently spending a lot of time around people with various conditions. Despite this experience, I cringe when I think about past incidents where I might have thought someone’s slowness was just disregard for other people’s time or assumed that someone’s lack of balance was the result of too many drinks. I know there are times when my husband’s symptoms are probably misinterpreted and that if others knew the true cause they would be more tolerant and considerate as well.

5) It’s anybody’s guess. Parkinson’s is a very individual disease. While there’s a typical progression to the illness, not everyone experiences their symptoms the same way. Some people’s illness progresses very quickly, others more slowly. I have no idea exactly what’s in store for my future–but then again, does anybody? I also have no idea how well I’ll continue to cope with it all. My only hope is that I continue to recognize the blessings in my life and appreciate those who are helping my husband and me along this journey.

How this came about: KitKat’s story

I woke up one day as a grown up. No one tells you how to be that. Sometimes I excel at it and other times I am tripping through it.

Looking at myself from the outside, I see a woman busy raising two young kids, enjoying great family and friends, and building a demanding but good career. Shouldn’t that be enough? Isn’t it all I ever wanted? If I have it all, why do I fantasize about giving it all up and running away to sell toe rings on a beach? Maybe I need to add another distraction to my already over-scheduled life?

Usually a glass of wine and good girlfriends get me over the hump. Lately, the more I talk with others, the more I find out I’m not alone in my contradictions and craziness. Take Stormy for example, she was my professional mentor, the one who always provided words of wisdom through my ups and downs, gave sound advice on marriage, parenting, and career choices. Yep, the one who had it all together! So as our friendship grew over the years and we became peers, I was surprised (and secretly thrilled) to discover not even she had it all figured out and put together.

Since talking and sharing is what has helped us get through some major and minor internal struggles, we’re hoping this blog will allow other women to know they aren’t crazy – or if they are, well at least realize they are in good company. I also am hoping that by writing down and examining all the contradictions running though my head, I will finally discover that perfect balance between adding new excitement and being content with what’s already there. I have a feeling that this is easier said than done.

How this came about: Stormy’s story

For many of my adult years, I was consumed by activity. I married and started a family when I was relatively young, while simultaneously working part-time in my chosen field (marketing/communications) and earning a bachelor’s degree.

Once I had degree in hand, I redoubled my career efforts and took a challenging, full-time marketing job—where I met KitKat (more on that later). I also began a process I’d been considering forever—adopting a preschooler. This was the Holy Grail of my existence: something I had felt called to do my whole life. I have never felt so full of purpose and clarity as when I was working on my daughter’s adoption. Afterward, with my newest child settled into our home life like she was always meant to be there (because, in fact, she was), I felt a sense of fulfillment, but at the same time, a bit aimless. I felt like a bride after the big day or a kid on the 26th of December and was left wondering, “Now what?”

After crossing such big to-dos off my life’s list, being a standard-issue working mother of three didn’t seem like much of a challenge. Although my company did its best to keep me on my toes by changing its brand monthly (that’s only a slight exaggeration), I felt adrift for several years.

Whether you think nature abhors a vacuum or God has a twisted sense of humor, my world was turned upside down in 2003 when my husband was diagnosed with a serious degenerative condition. Wait a minute, God…This wasn’t what I had in mind when I said I needed a purpose! Couldn’t I just adopt another kid instead?

This kicked off what has been a decade of struggle. I knew in my heart that my new “calling” was to be a supportive wife to my husband as he battles his illness, but inwardly I rebelled against that role. (If you ask my friends, family or colleagues to describe me, I can assure you that “caregiver” will not come up anywhere in the description.) So, while I was committed to doing right by my husband, I felt that rising to this particular challenge might kill me in the process.

Denial seemed easier than acceptance, so having taken a decade to earn my BA as a part-time student, I plunged back into the familiar distraction of school. But once my MBA was complete, I finally had to face my new reality. My relationship with my husband needed to be renegotiated at the same time my kids were leaving the nest. I suddenly had more free time than I’ve ever had in my adult life–time to pursue a lifetime of interests that had always been put on hold. But now my husband’s condition complicated things, and I had a burning motivation to escape the premature “senior” lifestyle that his illness seemed to be forcing upon me.

Which brings us back to KitKat—and this blog. KitKat and I have known each other for almost 15 years. In that time, we’ve supported each other through a number of transitions: marriage, infertility, childbirth, adoption, career changes, unemployment, grad school—not to mention hairstyles and fashion trends. I’m a few years older, more established in our mutual field and have double the experience with marriage and kids. Therefore, she’s always looked to me for good advice and usually I can provide it. However, I’ve recently experienced the Peter Principle where my life’s choices are concerned—I’ve risen to the level of my own incompetence and it’s clear that I need a new approach to the rest of my life.

Although we are at different life stages, KitKat and I have similar temperaments—we challenge each other, but can always rely on the other to withhold judgment and to provide sound counsel. We’re on similar journeys with different motivations, different tactics and probably different ideas of what a “happy ending” will look like. But we’ve decided to tackle our individual challenges together and invite you, our readers, along for the ride. We believe “there is strength in numbers,” “some of us are smarter than all of us,” and “there is no I in team” (oops—that last one slipped in). We believe there are probably others out there who can relate to our thinking, who are attempting to solve problems of their own, and who might offer up a new perspective that provides insight into our own issues.

That being said, we’re looking forward to learning about ourselves as we continue to challenge each other—and to hear your thoughts and advice along the way—even if it’s all “easier said than done.”