2017 was the Year of Uncertainty. Being able to look back on it as a whole I think that is how I would characterise it. The most basic certainties disappeared: Phil became unemployed in the April and has not worked since. Fortunately, so fortunately, we are financially sound due to an inheritance, but the uncertainty remains. When will he find a job? What will the new routine be? How will we cope with being together all the time? And now that we’re used to that, when he does get a job how will we all cope with being apart? What will our income be? How long will our finances remain intact? At first we were certain it wouldn’t be for long. Then we almost became certain he would never work again (after a particularly brutal setback). The reality is that of course he will find a new job. We just don’t know when.
The job search has been put on hold temporarily, or has slowed down a lot, because we are now waiting for David’s third open heart surgery to take place. This is imminent. But we don’t know exactly when it will be. Another huge source of uncertainty. Alder Hey hospital typically performs its Fontan completion surgeries on a Monday, with the child coming in the Thursday before for bloods and other prep, then returning on the Monday for the op. So we will probably be in on those days of the week. But which dates we have no idea. It will probably be in February, but it could be the last Monday of January. Or it could be another day of the week depending on schedules and emergencies and cancellations. And David could need to be in hospital for one week, two weeks, six weeks, eight weeks….. The reality? Total uncertainty. We just don’t know.
Those have been, and remain, the biggies. But there are smaller uncertainties too. When all of this is over, and later on this year when David starts school full time, what do I want to do? Do I want to earn money? If so, how? Having left my last job due to panic attacks, how will I cope with the workplace? Will all of the treatment I have had for anxiety pay off, or will I be just as overwhelmed as I ever was? Do I want to go back to voluntary and campaign work instead? Do I want to live a life of leisure? Can we afford that? Would it be desirable? What will actually make us all happy? Who knows. Another opportunity to embrace the uncertainty. We will try some things and see what works.
Because as awful as it is, uncertainty is something that can be embraced. 2017 was also the year that I lost my political certainties. Having wrapped myself in the liberal bubble, fuelled by fear of the Brexit referendum and the election of Donald Trump, I was more certain about politics than I ever had been before, at the beginning of the year. And then I met new people. And stepped out of the bubble. And I asked questions – but crucially was also questioned myself. And I saw what could happen when people with ostensibly the same political leanings as I let themselves get carried away by their certainties and self-righteousness. No matter what your politics, when you let the issues become more important than your relationships and interactions with other human beings, when you let rightness overcome kindness, you need to stop and take a look at yourself. Which I did. And I am happy to say that I don’t have the answers anymore. I am uncertain. Which I think is a far healthier place to be.
Uncertainty affects us all in different ways. I find myself reaching for any kind of control that I can grasp. Suddenly I will be nagging Phil to get done jobs around the house, suddenly the smallest tasks become essential because we need to be on top of things, we need to be ticking off things on a list, we need to be achieving something so that we feel in control of the minutiae, because the big things are out of our control.
Phil has found an excellent outlet in creativity, using the facilities at Fablab and Hackspace to do wood and metalworking. These places have been his refuge and he has had the time to hone skills he has always wanted to explore. Keeping busy and trying new things has kept some of the chaos at bay.
Edward has struggled as David’s operation approaches, and just before Christmas his wonderful school arranged Play Therapy sessions for him, which have made such a difference. The sessions themselves include all manner of certainties: the same therapist each week, the same time and day, the same room, it being made very clear which session he is on and how many he has left…. The day that he had to have his session on a different day of the week really threw him. We all crave certainty and familiarity, especially at times of turmoil.
David, at the centre of this particular whirlwind, is as unfazed as ever. He is certain that he is David, and that David is awesome. At four years old, what more do you need?
As we all know, but try to ignore, in reality we have no certainties at all. Anything could happen on any given day, and although we can predict what is most likely to happen, all kinds of things can come out of the blue. We learned this when David was diagnosed with Hypoplastic Left Heart Syndrome a day before he was born. We were certain we were having another baby and we were certain we knew what that meant. We were all geared up for Newborn Valley and had got Edward ready to be a big brother. Suddenly our baby was dreadfully ill, might not survive birth, might not survive surgery, might not come home. Edward might never meet him. We did not know.
And I realised that what was upsetting me the most was losing the picture I had in my mind of what it was going to be like. Before I could come to terms with what we faced I had to grieve for what we had lost. In reality we hadn’t lost anything. Because we hadn’t had it. But we had pictured it, and planned it, and imagined it. So we had to grieve and let it go.
The magical thing is though that the reality of David has been so much more amazing and wonderful than anything we imagined. He came into our lives like a tornado and hasn’t stopped since. Not for a moment have I felt sad about his heart condition – even though I haven’t enjoyed some of the things we’ve gone through – because without it he wouldn’t be David. And I wouldn’t be the woman I’ve become, Phil wouldn’t be the man he is today, and Edward wouldn’t be the incredible big brother that David adores.
I was reminded of how it feels to lose a future plan twice at the end of last year, although in much smaller ways. For a short time we thought Phil had landed a dream job, only for him to lose the offer as part of a “hiring freeze” by the company. And then a planned trip for earlier this month had to change significantly, even though in essentials it remained the same. With the job opportunity, we had to grieve for the future we had quickly built up in our minds, even though we had never experienced it. With the trip I needed to say goodbye to the plans I had made, even though the amended plans were still wonderful and the trip that actually happened was fantastic. We hate it when plans change and things become, once again, uncertain, but when we have said goodbye to our imaginings we most often find that the reality is not only something we can deal with but is also something amazing that we wouldn’t have wanted to miss.
When I talk about the fact that, in truth, there are no certainties for any of us, people often quote the old “sure, you could get run over by a bus tomorrow”. Personally I don’t find that motivating – the sudden death of anyone is too tragic to be a motivating idea. But we understand the point: what if a massive change occurred that you weren’t expecting, that meant you didn’t have the choices you do now? That perhaps the “I’ll do it tomorrow” was taken away from you? What if today really does turn out to be the best time to do that thing you want to do, but you only find that out in hindsight? What if the big unexpected change is something wonderful, but it still limits your ability to do the things you thought you’d definitely do? Surely it is better just to seize the day, and then you can be certain that you’ll do it, whatever it is, because it’s already done.
And of course, for some people the real tragedy wouldn’t be massive change but being told that their lives were going to stay exactly the same. For some that would be a hard truth to face. What if you were given the certainty that your life actually wouldn’t ever change, unless you changed it? How would that make you feel? Other than today, right now, when is the time to make a change?
Uncertainty is frightening. It triggers anxiety and it keeps us awake at night and it makes us want to retreat to what little certainties we can find. It can even make us feel like we want to do stupid, drastic things, just so that we can at least be in control. Maybe I’ll just quit my job? Maybe I’ll end this relationship? Maybe I’ll change my car, buy a dog, cut my hair, move abroad – just so that I can say I chose to do that. Perhaps those are the right decisions. But if they are born out of nothing more than a desire to control something, anything, then often the better choice would be to sit with the uncertainty. And see where it leads.
Because embracing uncertainty leads to adventures and new experiences. So many times last year people asked me “what if this happens?” “What if you end up feeling this way?” “What if this goes wrong?” “What if this doesn’t work out the way you hope?” And my answer is always the same: I’ll cope with it when it happens. Reality is always less terrifying than what we imagine. And Phil and I have a good pedigree when it comes to coping with what life throws at us. So we are facing each day as it happens. And making our choices as they are presented to us. And reaching out to the people who love us, who are incredible people that bring joy to our lives.
Whether or not we can see the uncertainty in life, it is always there. All we can do is the best that we can, choose wisely, love fiercely, seize happiness and hold on tight to the things that matter. The rest is just bending in the breeze.