My post today is not really about FTD. More about what has happened in the post-FTD era. Your experience will be vastly different to mine. Perhaps my sharing will help you. But I think it will help me more. FTD has shaped my life in ways that are somewhat indescribable, but I will do my best.
Last September, I had cause to get together with family members and many old friends for the first time since the bastard disease took my husband. I was able to successfully coordinate seeing many people in the space of 2 weeks during a visit back to the UK.
My husband had died a year before and I had not seen most of them in the interim. I expected it would be emotional and it was. More for all of them than me. I had had a whole year in which to begin reshaping my life. They all said I have not changed. But I am changed. I think for the better. I have a life that my husband and I started together. A different life than the one I envisaged six years ago, but still a life. A life that we filled together with stuff, people, and love. Only now I am enjoying it without him.
People never cease to amaze me. Their perception of widowhood is varied. Of course, I am not the only widow they know. There are many women much younger than me who have arrived at widowhood unexpectedly under much more tragic circumstances.
One of the things you ask yourself when newly widowed is “Who am I?” You have been someone’s daughter, wife, mother, sister/son, husband, father, brother your whole life. Figuring out who you’ve become in the interim is not easy.
Then you realize that you haven’t become anyone else. You’re still you. All those little things you never liked about yourself are still there. Ha!
But, here’s the thing. The new you is the old you with a new view on the world. It’s as if you can see things more clearly somehow. When you’re part of a couple, a partnership, you tend to like the same things, move in the same circles. That’s why you’re a couple —right? You even do things just because you know it pleases the other person. When you don’t have to that anymore, it feels weird. You don’t really know what to do. But then you begin to see things from an entirely different perspective. Instead of seeing the world as one of a pair, and what it means to both of you, a collective being like the Borg, you see it as a single entity. What it means to you, not what it means to us. That’s not to say that when you were part of a couple you didn’t have independent thoughts and opinions. Just that somehow, those things are less important than just being us.
Of course, you miss all the old things. The sharing, the affection, those small things that were only funny or meant something to the two of you. That happens while they are still alive. But acceptance brings a power from within you. A power that you didn’t even realize you had. It’s the power of you. Not pleasing someone else brings freedom. Not the kind that you would have wished for necessarily. But the freedom to have opinions, make decisions, do things that you may never have even considered before.
Ours was not the kind of relationship where one partner had dominance over the other. Not the kind where either told the other one what to do. It was built on the respect for one another’s feelings and sensitivities that develops over many years of watching and experiencing life’s trials and tribulations together. Years of success and failure, tears and joy. You may not always like your partner, but you always love them. Even when you don’t like their behavior, opinions or decisions. You still love them, if your love is true and unbending.
So the freedom that widowhood brings is bitter sweet. You are free to say, think, do whatever you please. But often you don’t want to. Or you have forgotten how. Or maybe you never even knew.
I went from my parents house to being married, other than a short period where I lived away from home with friends. So complete independence was somewhat of a mystery to me. I had never lived alone, never been financially independent, never owned my own home. Never did any of the things that young, single women take for granted these days.
I was born into an era of building and rebuilding lives that had been irrevocably changed by World War II. My own parents and their families had been affected in all the ways that wars cause to people. They had lost family members, been bombed in their homes and lived off government food rations for years. My paternal grandfather survived the D-Day landings. My maternal grandfather was captured and taken as a prisoner of war for years. My mother never got over that. He was gone during some of her most formative years. She learned to be independent, take care of her little brother while her mother went to work.
In the absence of another provider, there was little choice. Learn how to do it, or live in abject poverty My grandfather was appalled when he returned home after the war that my grandmother knew how to change an electrical plug and do other home repairs. Before that she had been a housewife, relying on the breadwinner to care for her and their children. He wanted to know who (what man) she had in the house to show her how to do all those things. But there was none, she just figured out what she had to do to survive.
When I was born, ten years after the end of the war, things were beginning to improve. There was more food, a better infrastructure and just an overall feeling of hope. The 1950s and 60s were a re-awakening of everything good that had been destroyed for many people.
The fighting spirit instilled in my mother by her parents and their experiences has somehow been passed to me. Whether it’s genetic or not, I’m not sure. My grandfather survived three years of starvation and god-knows-what in prisoner-of-war camps in Italy and Germany. He never spoke of it, but whatever it was that kept him going is most certainly present in my mother and has been passed on to me.
I am not comparing the experience I went through in caring for my husband and his dementia for five years to my grandfather’s imprisonment. Not at all. But I came to understand a different kind of incarceration. One of the spirit. The kind that beats you down so many times, you often wonder if you can survive it. It’s not a physical beating; there are no visible scars. It is emotional bruising that takes a long time to get used to. I say that because it doesn’t go away. You get used to it, but it doesn’t go away. It’s like a permanent deathmark. A port wine stain of the soul. No surgery could take it away.
You feel like your port wine stain makes you stand out. Being by yourself in the midst of a crowd of people, feeling different, is a strange experience. I wouldn’t call it loneliness. I don’t feel lonely. I miss my husband, of course I do. I miss the familiarity, the everyday grind of normality. But I often wonder what we would be doing if things had taken a different course. I don’t dwell on it too long because it’s not a very productive way to think. It’s hard to describe your thought process when experiencing losing someone close. It’s different for everyone of course. No one had what you had. No one shared what you shared.
It’s so easy to slip into Clichéland —“I’ve lost half of me”, “I feel like part of me is missing”. All true of course, but so inadequate when trying to describe how you really feel. I’ve read many books, articles, newsletters sent by Hospice and the funeral home for the first year after my husband died. They are well-intended and actually sometimes food for thought. But still, there is this indescribable hole inside me that defies illustration.
Truth is, sometimes you forget what’s happened. You get on with the day-to-day stuff. Your lost one pops into your mind frequently of course, but you have to work, sleep, eat, see people, so the experience becomes even more personal. Even less worthy of sharing. Because really, no one want to know. They don’t want to see it, hear about it, have to remember it. I’m not being self-pitying here, just realistic. People tell me their own woes. Hospital visits, deceased parents, sick kids. It’s all just life.
I accept life. I accept that shit happens. Most people fall into two categories. They were part of what happened. They saw the anguish, the pain, the screaming, the tears. Or they weren’t. So the only point of reference they have is how it affected them. How close they were to the proceedings. How much they were involved. Other than that, it’s all mine.
Seeing people who remind me of my marriage and life with my husband is often painful. But there is a kind of numbness that exists. Psychoanalysts would probably say that it is my brain trying to protect itself from the pain. But I have faced the pain. It’s there. I can’t ignore it. I have embraced it just like someone who has to inject themselves with insulin every day. I accept that it is a part of me that will never go away. Having pain doesn’t mean I can’t be happy with my lot in life.
It is what it is. An overused saying but oh so true. So, as my life is not what I envisaged before the bastard disease took hold of it, I don’t really envisage any more. I take moments, days and keep them in my new memory bank. I have put the other one onto a virtual jump drive in my mind, where I take it out frequently and look at it. Sometimes every day, sometimes less often. It’s like a photo album that catalogues all my experiences for thirty-eight of the first fifty-six years of my life. For all I know, I could have another fifty-six left to go yet. I’ll need another jump drive.
I have other albums from before. From happy childhood days. From teenage years. I look at those too. But this new album that I’m working on; this new jump drive that is my widowed life is a little different. Because the pictures are superimposed on the pictures from all the other albums. So, sometimes, the pictures are out of focus. Blurry. Unclear as to what they mean or symbolize.
I quite like it. The blurriness. I can see what’s happening, I can see what happened before. Some people around me can only see this album. Only see today’s pictures. It takes a special kind of vision to be able to sort the images from one another.
So, where to from here? I’m not making any plans. I like the day-to-day. I find that when you make plans, something usually comes along that presents another path. Sometimes it’s better than the original plan. I like that. And if it’s not, well, so be it, It’s just another file on the jump drive.
FTD was an experience in my life. Not one I would have chosen, but one that came along anyway. “It” took away what I had become, what my husband was to me. Then, eventually, it took his physical entity. If you are the type of philosopher that believes everything happens for a reason, then I am still waiting to find out what that reason is. But it’s not been that long. I can wait. Until FTD came along, my life, our life, was ticking along quite nicely, just like everyone else’s. Ups, downs, but mostly in between.
That’s life. That’s how mankind has moved through thousands of years of existence. Doesn’t help when life/FTD/cancer/people step in and change it, but no one ever said that you could have everything you wanted.