Marriage is tricky. It is this thing so many hold strong opinions on: to who should be allowed to take part in this thing, to how this thing should be conducted in the day to day. Marriage isn’t something that can be held or seen yet it manages to be and is capable of being broken. This sightless being impacts others – children, in-laws, friends and even businesses – but remains personal. It is between two people. Based on something, and then runs merry over everyone else.
The foundation of our marriage seemed to be hiking. We may have met in a dodgy dance club, but our first real date was up Lion’s Head, which is where he eventually proposed. Hiking. It is what we did together as our thing rocked from side to side and was dragged half ass backwards across continents. Over the years our thing has been stretched, torn, twisted and frayed. But the one constant was that the we that made us was dependent on being partners. I’d grab my end, he his, and together we hauled our thing towards the next adventure, the next challenge, swiping the sweat from our brow while covered in dirt. (And once praying to God that the damn bear didn’t decide to sit on our tent).
Balance. Isn’t marriage supposed to be balanced? Or is that another myth?
Either way, the deal seems to have changed. Not on purpose. But there we are. In the last few years I’ve gone from being a good old reliable car that chugs up hills to a jalopy. This life long flexible trait of mine – hypermobility – had been gradually morphing into hypermobility syndrome. Which triggered fibromyalgia. All of which has revved up my autoimmune response. In short, I’m a bit of a mess.
The change of me has impacted almost every aspect of life: from driving to how I write, cook, do laundry, parent and walk the dog. I am wary of certain taps and door handles. I’ve selected soaps, creams, detergents and wine based more on the way they are packaged than what they contain. There are days where the condition dictates what clothes I wear to how I do my hair. Sometimes it is a matter of changing my approach, such as how I grocery shop or read a book (that’s a whole ‘nother essay). Other times it is learning to ask for help.
As my life modifies, so does my marriage and how we and our two children operate as a family. It takes time and trial and error because, for the most part, there are no cut and dry rules of how we should proceed. This is because the physical limitations of the condition are often not as simple as ‘I can’ or ‘I can’t.’ Rather it is about costs, the repercussions of an action, which must be weighed against living a full life. Andrew Miller, who has Spinal Muscular Atrophy, explains this brilliantly in his article “Working with Failure”:
With a progressive disease, the reality is that there are limits to what you can do physically. Now, you can challenge those limits, and you should, but you also have to deal with the risk of mindless positivity. When you push too hard and fall on your face, in other words, you often break something. A hip, let’s say. And that puts you in hospital, under the surgeon’s knife. This is the context where you lose strength in huge chunks, never to be regained. And then there’s the flip side – much of the time you would prefer never to go outside the house again, but hiding away will see your body turn into terminal jelly. You need to move at the outer bounds of your physical ability to stay as strong as you can.
I try to do as much as I can so I’m strong enough to face another day. Yet not so much that I ruin everything. All of which requires fitting in lots of rest. But not too much. Because that will ruin everything, too.
The ways to achieve this new life balance are numerous. The hardest one is an attitude adjustment. And I don’t mean about having to do physiotherapy or giving up knitting. No, I’m talking about pride. When I was forced to stop rowing I avoided joining my family for boating activities. It is embarrassing to sit on my butt doing ziltch while everyone else – even the five-year old! – took turns digging in. I tackled real rapids and the sea at 12. I rowed competitively. I do not just sit there in boats. At first my excuse was that this was temporary. ‘A few more months and I’ll be better,’ I would say, but that day never came. Eventually I had to face the fact that never being there, never sharing in those moments, impacts everyone, including that thing called marriage. So I’ve swallowed my pride and from time to time sit in the boat, oar-less. (Backseat drivers have nothing on my backseat rowing.)
With the attitude adjustment the second hardest has been to be open and honest (in public, not just in the blogging world). That it is better to explain why you are hesitant than pretend you don’t want to participate. Which is how I managed to take part in the Tsitsikamma Canopy Tour. They have a solution for those with physical challenges, you see. You simply have to ask. Admit. That there are things you can’t do, but would like to do all the same. Which is what Husband taught me when he asked the tour, ‘Is there an option for those who are disabled?’
Yes, actually, there is.
Life is there to be lived; we simply have to understand my limitations, the rules. Except the rules keep changing. I rarely injury myself while actually exercising. Mind and body are focused solely on movement, holding joints in position, tightening the core. But it is hard to keep that focus while dealing with the every day. Thoughtlessly pick up a mug of coffee – ouch. Rush for the phone – whoops. Help the kids with an art project – uh oh. Or absentmindedly suck on a mint while driving a car – pop. That last one is known as the ‘rib thing,’ where I cracked / tore/ ripped, dislocated something(s). (It’s a long story.) Whatever it is, nothing I’ve ever done has been more painful or set me back like this damn injury has. The consequence (amongst many!) was no hiking. For months.
It wasn’t that my family hasn’t been good sports about it all. But it was like watching another piece of us, that foundation to our thing, get chipped away. Husband and I had already stopped surfing together, rowing side by side, climbing, ping-pong. All activities he now does alone, with only the kids or skips. We’ve even changed the way we camp. Sure, marriage evolves. Nor is Husband such a child that he’d pout. But there comes a point where you are ready to gamble. Like writing. There is a cost of continuing to type away as I do. But the expense of not writing is higher – to my mind, my soul. Even if I never produce anything worth publishing. Because it is mine.
Similarly, Husband and I need something that is us. That time out there – being – was more than dust and lovely views. It is a part of our thing. We both know that the hiking may, eventually, have to come to an end. But I wasn’t ready to do that just yet. So after the ‘rib thing’ I set up a series of small aims, which were all set to lead to one big goal: by the end of March Husband and I would hire a sitter and do the St Blaize trail.
For six months I clawed my way forward. First there were the infantile exercises to get me back to my regular physio routine. Then I started hitting marks: back to swimming a full 20min without arms, first walk on the beach, first 20 min hike (off tarred paths), first 40 min hike, swimming 20 with arms, 30min sessions at the dojo, exceeding my old physio routine, 60min at the dojo, 60 min hike, walking my dog on lead by myself, cutting an onion, making a damn dinner from scratch… I worked hard, all the while trying to pace myself, listen to my body so I wouldn’t suffer another big set back. And listening to my body meant conceding that the St Blaize trail wasn’t happening in March. Cardiovascular fitness was fine, but the muscles and ligaments were not ready for that much instability for that length of time. So we adjusted the goal post - 27 April, the day before Husband’s birthday. A fitting ‘present’ to both of us.
Reader, we had a wonderful day.