Recently I’ve been getting some emails and responses to the blog that have perturbed me. The basic gist of the feedback – some trying to be helpful, others to be critical – is that by writing this blog I am, in some way, propagating my own demise. That I shouldn’t be giving weight to the fact that I might not be here, but should, in fact, be creating a mantra that leaves no room for any other result but my continued life. It’s the “what the mind dwells upon, the body acts upon” idea.* One person suggested I should write from the perspective of myself at 97. As if I’ve lived a full life and am looking back and reflecting on all the good that happened. Though I think this is an interesting exercise – along the same lines as writing your own obituary in order to reveal what kind of life you’d like to lead or what kind of person you want to be remembered as – it isn’t what I’m doing here. I have not lived a full life. I am not looking back. I am looking forward and can only speak the truth as I know it now, from the perspective of the person I am today. I’m looking to give Lochlan advice on who I want him to be, not muse upon who he has become. Who he’ll be is still a mystery. An exciting mystery and one that I have no interest in speeding along or guessing the outcome of. All I’m hoping is to give him guidance on how to stay grounded, safe and happy on his journey, whether I’m around or not. You don’t have to be sick to worry that you won’t be able to tell or teach your children all you want. I could die tomorrow in a car accident (God forbid) or in 60 years in my bed. It doesn’t change the fact that I want to leave a legacy for my child. Nor do I think it makes me negative.
One woman recently wrote to “reframe my language”. She claimed that people like me get too “attached” to our “labels and stories” and if I wanted to be around for a long time I had to stop using the “sick” and “in case I won’t be here” language. She told me to “live my life from the perspective that things are wonderful, perfect, healthy and happy” and I would be “amazed at what could happen.” Now, after I cried at the criticism – because no matter how positive I feel on most days, I am very sensitive to someone suggesting that I am, in any way, making myself more sick – I got angry. I am a huge believer in the power of positive thinking. I’ve seen The Secret. I’ve done my mantras in the mirror – “I get better and better every day” – and after the mourning period of my diagnosis I brushed myself off and got on with my life. But there’s a big difference between being positive and being in denial. Everything isn’t wonderful and perfect. I’m not perfectly healthy no matter how happy I am, and to suggest that I just have to reframe my thoughts to see the magic happen, is not only naive but slightly insulting.
When Sean and I were first married we got a call about life insurance. Our insurance company suggested that now that we were married we should think seriously about our futures. At the time I couldn’t deal with it. I just got married. I had my whole life ahead of me. Why would I want to sit down and talk about my death.
When Sean turned 30 they called again so he could “lock” in the 20-year-old rate. We just figured it was all about making a buck and frankly, we still weren’t ready to think about it. Hindsight being 20/20, I should have done it before I got married. Now that I have PH I don’t qualify for life insurance. I’m too big a risk. Right after my diagnosis Sean and Loch signed up immediately – the concept of death was now part of our reality, so preparing for it didn’t seem so weird – and I’d advise anyone who asked, to get on it as soon as possible. It’s not depressing to get your affairs in order. It’s responsible. Having life insurance, or a living will, isn’t tempting fate, it’s accepting the inevitable and handling it in a mature way.
What I should have done with my life insurance I’m doing with these letters. The reality of my situation might have prompted the initial step, but at this point it’s less about writing the letters in case I’m gone, and more about writing the letters themselves. They make me happy. They make me feel productive. In doing something proactive for my child, I feel more alive and connected to the world as a whole. To the people who think I make myself weaker – accepting and referring to my reality – I humbly disagree. If anything I’m stronger because I’m less afraid.
I believe in the power of the human mind. In the strength of a positive outlook. In making your own destiny by framing your own reality. But I also believe in Reality. In Truth. In Fact.
The fact is, I’m sick.
The reality is, we don’t know how long I’ve got.
The truth is, no one does.
I’m doing the best with what I’ve been given. As I say in the intro to my blog: I’m just playing the cards I’ve been dealt and still trying to win. Pretending reality is different doesn’t make it so, but having faith and taking steps to ensure the best possible outcome certainly helps.
Expect the best, plan for the worst, and prepare to be surprised.**
It doesn’t hurt to plan ahead. It wasn’t raining when Noah built the arc.***
Thanks for reading.
*Denis Waitley – motivational speaker
** Denis Waitley – motivational speaker