One Year In

Saturday marks one year to the day since Mike’s multiple sclerosis diagnosis.

One year ago, I was up early, putting on my make-up and getting ready for work when Mike met me at the bathroom door. The MRI was back already (it had been less than 24 hours) The results undeniably clear, as two neurologists later confirmed.

A classic case of multiple sclerosis.

I called into work, put my pajamas back on, and we sat on the back patio drinking coffee in stunned silence. The months and months (and months) of bizarre symptoms now had an explanation. But this. We never thought it would be this. We never thought it would be anything, really. We thought we might get a, “Oh, you’ve turned 40 you know. Things don’t work like they used to.” Or a, “You’re getting older. You need to not work 12 hour days outside in the sun.” Or – in the absolute worst case scenario, maybe a lecture about not eating so much pizza or drinking so much beer and taking better care of oneself. Even though we already took pretty darn good care of ourselves. We expected something, just something minor.

We never expected MS.

Except that we did.

The months of ongoing symptoms that came and went affecting his vision, legs, and sense of touch had unnerved Mike enough to ask two separate doctors about MS. Both agreed that was unlikely. His symptoms would certainly be different if it were MS. Certainly more drastic. Certainly not so intermittent. I chose to agree with the doctors. There was no way that Mike’s troubles were anything serious. We were some of the most active, healthy, natural-living people around. We ran an organic market farm, for crying out loud. We did 10 mile day hikes on the weekends. Organic farmers and avid day-hikers don’t get chronic diseases.

Except that they do.

So that April before the diagnosis, after one of our day hikes that should have been easy – 8 miles in a national park along a trail that was largely flat, I knew, too. When Mike had a hard time keeping up with me (he’d always out-hiked me making me mad at how far ahead he could get) I made him go first to set the pace.  On the one brief steep stretch of the trail I saw his right foot completely cease working. He couldn’t lift it high enough to take the steps out of the canyon, so he had to over-compensate with his hip, giving him a strange gait and a bad limp. But this wasn’t the painful limp of a sprained ankle or bad knee. It looked for all the world as if he had a disability. As if his brain wasn’t talking to his leg. My outdoorsman, flannel-and-hiking-boot wearing husband could barely get out of the canyon.  Cold fear washed over me and then settled with an unnerving certainty in my stomach.

We knew.

So when that Friday morning the news became official we were stunned yet not surprised. We sat, for hours probably. It was Friday, harvest day, so we must have harvested the vegetables, packed the truck, and prepped the money box for the market, though I remember none of this.  The next morning we were at the market, trying for all the world to pretend it was a normal day. To pretend that we weren’t terrified both for Mike’s health and for the future of our our little farm that we’d worked so hard to build and that relied so heavily on physical labor.

But now we’re one year in. And beautifully, perfectly, one year in falls on a market day which means we’ll be in our usual spot in the park with our usual pile of vegetables doing our darnedest to try and beat the previous week’s sales…just like usual.

I’ve spent the last couple of weeks in a strange time machine in my head, flashing back and forth between this summer and last, trying to figure out where we were then, how far we’ve come now, and attempting, with absolutely no success, to try and predict where we’ll be next year, five years from now, or ten. The thing about a chronic illness diagnosis is that it simply forces you to come to terms with the uncertainty that, in reality, confronts all of us daily. No one knows tomorrow.  None of us know how long our health will hold. We can’t say how long our loved ones will be with us, or when (not if) that day will come where one instant changes everything.

For us, we don’t know how long Mike’s MS will stay in the “remitting” (remission) stage. We don’t know how long it will be to the next attack, though daily we hope for “never.”  We don’t know if the physical therapy routine we’re planning to implement in the fall, after market season ends, will make any difference in extending his stamina for walking or his balance.  We don’t know if his health will hold steady, decline, or if he could be one of the lucky few who never slips into the secondary progressive stage of the disease. We don’t know if we’ll be able to keep health insurance. We don’t know year to year costs – financial, emotional or otherwise.

We simply don’t know. So many things.

Except, naturally, how to grow some good lookin’ vegetables. And raise some good lookin’ chickens. Who lay some good tastin’ eggs.

So we’re sticking with what we know.

What other choice do we have?

We know how to pull three months of carrots for a market from a (relatively speaking) tiny garden. We know how to prevent leaf miners from destroying our beet greens. We know when to plant garlic, how to amend our clay soil and which tomato varieties will ripen earliest.  We know  how to recognize the different squawks of our laying hens (begging, bickering, or content,) we know how keep greens from wilting at the market on a hot summer day and how close we can run the lawnmower to the beehive without pissing off the bees.

We know that life as we knew it pre-diagnosis has changed but it certainly hasn’t ended and to lay down, roll over and play dead when really you’re just diagnosed seems a bit overly dramatic.

Mike and I, we’re not overly dramatic people.

So we dug in our heels, set our jaws and got about the business of knowing new things.

Now, he knows not to deadlift anything heavy, or it will result in an instant onset of his limp. Now, I know that whenever he says, “Can you run and get me________,” the answer is always, “Yes.” Now, we know that coffee triggers symptoms, a paleo-type diet reduces them, and to always keep Tylenol on hand in case of a fever. We know how to divvy up work on market days so that he’s got enough leg stamina to make it through, we know that when we harvest garlic we should put me on the bending and digging end of things, and we know that we should plan every physical task with efficiency in mind.

But mostly, we know now, more than ever, that neither of us could run this homestead without the other. I don’t have his flexible schedule, his ability to work from home or, most importantly, his attention to detail. He doesn’t have…well, my extra set of legs. We know that rather than pulling us apart, the stress of the last year has only brought us closer together.

We also know when to chuck all the hard work, reflection, and ponderings and just go drink a glass of wine. Sometimes, maybe a bottle.

So while we’re living in an unsettling time of uncertainty, we’re choosing to deal with it by sticking to what we know. And we know that this is our story. We’re your typical, small-time farmers joining in the growing local food movement and hoping we can make it work. Despite one little extra challenge we didn’t count on.

We know how to grow good food.

We know how to roll with the punches.

We know we’ve got each other.

So one year in from the day we thought our entire dream was crashing down around us…

We know we’ve got this.

5 Replies to “One Year In

  1. I think of and pray for both of you often. Thank you for sharing your story. I admire the strengh and determination that you each have. You are both amazing! Much love!!

  2. It is a lot to live with! Gumption is important, as is a lot of forgiving yourselves for things that you really can’t control. Living with uncertainty is especially hard for those of us blessed with a strong streak of determination. It is humbling and a reminder that as much as we try, we are not in control. But then we still have to try…and to hope and believe that what we do is making a difference. You know my spirit is out in the garden with you as well as at the infusion center that hopefully continues to allow you to be out there digging!

  3. Yes, you’ve got this–in more ways than one. Sounds for all the world like you two are living out a mantra that I made up for myself during some anxious times a few years ago: “There is no ‘there’–there is only ‘here.’ There is no ‘then’—there is only ‘now.'” So proud of you.

  4. So heartfelt and beautifully written, I’ll be thinking a little different today when I am digging around my plot ….

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