Facing Mortality

Sometimes things happen that are beyond your control. Bad things. You can face them, try to deal with them, or you can hide in denial.

My wife, Anne, has a number of illnesses and has been finding things increasingly difficult since the end of last year. We haven’t been out socially since New Year. In fact the only times she has left our home since then have been medical appointments.

She has always been strong-willed: that is what has gotten her through this far. Through traumatic events, through heart attacks, through cancer treatment. Through all of that she has kept going. When she suffered necrotizing fasciitis in her spine resulting in major surgery and it was not certain if she would ever walk again she never gave up, pushed herself and regained her mobility.

But there are limits. She saw her doctor earlier this week, and he was in tears as he told her that, basically, there was nothing that could be done beyond adjustments to her medications. She has emphysema and cancer, either of which can be fatal. But it is her heart that is the weakest link. It is most unlikely that she will see me complete my gender transition to fully become the person I am inside.

She who has always handled fear face-on, fighting with all her strength, has little strength left. She is truly afraid, not of dying, but of losing what independence she has. She copes with her pain very well, rarely becoming angry or upset. She hates to be an object of pity and hates to think that she will have to rely on others, primarily me, to care for her when she is unable to care for herself.

She has become afraid at the thought of going out socially. Afraid that people will show pity or treat her differently. That they will see that she looks ill.

These past few days since she saw her doctor she has been trying to face the fact that her illnesses are getting the better of her. Her years of denial have come crashing down and she is finding it so hard to accept the stark reality of her situation. To face the overwhelming probability that she will never feel better, that she will deteriorate over time. To face the fact that she is mortal, that the clock is ticking, and that her best days are all behind her.

She draws strength from her faith — she is Catholic — and that is a great comfort to her. She also finds comfort in my presence. I can’t make her better. I can’t take away the pain or ease her suffering. I can only be here so that she is not alone.

I’m An Embarrassment?

Somebody that my wife, Anne, has known all her life phoned her the other day. She hadn’t spoken to this person for a couple of months and had thought it strange that they had not been in touch for so long.

It turned out that this person had been on the receiving end of some transphobic teasing in public because of his association with me through my wife. Rather than standing up for Anne and me, he found the experience humiliating and took this out on my wife.

I’ll not go into all the details, but she was subjected to a torrent of insults and abuse shouted down the phone by this so-called close friend and ended up very upset and distressed. Being called some of the things — perverted, disgusting, embarrassing, mental — was bad enough, but there was worse which I will not repeat here. I’ll just say that it was a massive slur on her character and definitely slanderous.

All because she continues to love me as a trans woman. So these people think I am an embarrassment because I am making the journey to become my real self? Anne and I are two people who love each other and we can’t see how that affects the lives of these others.

We have a message for the people who don’t like how we are: we don’t want anything to do with you and your intolerance. You are an embarrassment, and your ignorant prejudice has no place in our lives. We choose to associate with people who value and practice tolerance, acceptance, understanding and love. Not those who close their minds and treat anything outside their narrow view of the world with fear, contempt, disgust and hatred.

Coming Out

In the week that a good-looking young man, Tom Daley, Olympic diver, came out as bisexual I have found myself wondering why this even constitutes news. To me it reinforces the impression that even today to differ from the heterosexual norm is still seen by too many people as worthy of comment.

So what are people going to make of me?

Continue reading

Financial Disaster Area

I screwed up again. Nothing new there: it’s a regular occurrence. This time I paid three bills twice, but luckily I’ve got the money in my account to cover it. Finances and me are not a felicitous combination: left to my own devices I will forget to pay bills, lose track of my balance and go overdrawn. Why should this be? I studied math to university level, I was an A student at school and won a Gold Award in a national mathematics competition, I’ve been working as a software developer for most of my adult life: I am completely comfortable with numbers and higher mathematics.

So… it’s not the numerical or arithmetical aspect that gives me trouble. It’s executive function (EF). Or rather executive dysfunction, specifically as it relates to planning and working memory. I’ve tried to manage household finances over the years but I always come unstuck, losing track of what’s paid, what’s due and how much money remains in the account. I’ve tried using written accounts, spreadsheets, internet & mobile banking and still I fail to keep on top of it.

Of course the household budget is not the only area where I suffer these or similar problems, but it is the most serious. I can’t multi-task – I am only able to concentrate on doing one thing at a time, which can be a limitation in the kitchen when I’m trying to toast bread at the same time as frying bacon. I’ve lost count of the number of times it has resulted in burnt toast since I forgot about it being under the grill until I smelled the burning! And at work I have problems with meetings – I sometimes forget about the meeting until after it has finished, or get confused about what day it is scheduled. And this is with a reminder on my PC: without one I am totally at sea.

Grocery shopping is another problem area (even without the associated sensory issues and the severe discomfort caused when they reorganize the shelves, but that’s a whole other subject). I have a routine – no surprise there – where I make a list first, sorted according to the store layout. I pick up the items in list order, and I still miss one or two items as often as not.

It’s a curious, sometimes frustrating state of affairs. I can hold down a full-time job, I can drive, I even run a darts competition in my local pub. But I can’t live independently. There are key areas where I need assistance that center around running a household: finances, laundry, cleaning, maintenance. I know that I have the skills to perform these tasks, which is the most frustrating part. I just lack the organization to do them consistently in a timely manner. I’ve tried, I really have. I’ve lived on my own for periods when I was a student as well as when I first moved away from home permanently to take up a new job. And every time it has been the same end result: things fall apart after only a few weeks.

It’s a benefit of being married that I have somebody else in the home whom I can rely on to do the organizing, to balance the books, and to remind me when jobs need doing. As I said to my wife only this morning, I don’t know what I’d do without her.

Empathy and Selfishness

I fear I’ve been behaving selfishly recently. I don’t want to make excuses – just try to explain. As I wrote recently, my wife is very ill at the moment and her physical pain, exhaustion and isolation are causing severe depression.

I find that I resonate with how she is feeling. I feel her depression like a deep, black pit; like a hundred hooks in my insides drawing them down into the depths, leaving a void yearning to be filled with anything other than the aching emptiness. I find it very difficult to function in the face of such intense emotion – and I am only feeling it second-hand, picking up the echoes of what my wife is experiencing!

I just don’t know how to handle the situation; these feelings. I don’t know what to do for my wife to help her with her depression. I feel lost. So, selfishly, I have been withdrawing and taking refuge in familiar routines. I’ve been alternately detached and irascible with her instead of being supportive. I know that’s wrong and I want to be supportive – it’s proving to be a big challenge.

My reaction to strong emotions is not at a conscious level – it is sheer gut instinct. Such feelings push the buttons of my primitive fight-or-flight response and my conscious mind has to fight hard against the tide to overcome these basic instincts. It doesn’t always succeed and that is when I overload.

Imagine, if you can, how a pet dog would react to its owners having a row in front of it. The dog can’t understand what is causing the situation but can pick up the emotional overtones and becomes distressed. Perhaps it slinks off, tail between its legs, and cowers in a corner, whining. And over time the dog will become more wary and it will take time and effort to overcome its reluctance to approach, its fear of being in that situation again.

Neurotypical people don’t react like that dog, and so don’t expect that other people would either. But some autistic people don’t have the ability to handle these emotionally-charged situations. We can’t rationalize the causes when we’re experiencing such distress. All we can do is react instinctively. There’s a very good article on this subject on the Autism and Empathy blog.

When I fail to react to somebody in the way that they expect, when I react in a way that appears unfeeling, irrational, selfish – that is often the result of all too much feeling on my part. Feeling – emotion – so strong that I can’t rationally cope with it and my mind regresses to a more primitive mode of operation: instinct, the primitive drive for self-preservation.

Rising Stress Revisited

A couple of days ago I mentioned a major cause of worry but couldn’t go into detail. Well, it’s to do with my wife. She had the results of tests on a tennis-ball-sized lump that was removed about three weeks ago and it was not good news. She doesn’t want me to go into detail so I can’t be more specific.

She has been very ill since the operation – internal bleeding causing a swelling as if she had a butternut squash under her skin and acute, chronic pain. I don’t know how she has managed to stand it so far – I doubt that I could.

But the worst part for her as a gregarious, outgoing person has been the isolation of being stuck at home apart from my company when I’m not at work and occasional visits from friends. This is causing depression.

Now I feel selfish talking about my feelings when she is going through so much but I need to write it down to help me get through. I am mostly coping, thanks to the distraction of work, but it is her depression that I find the hardest to handle. I see and hear how she is feeling and I come so close to being overwhelmed that I feel as if I’m on a knife-edge where the slightest push will tip me over the edge.

I came within a fraction of a meltdown tonight – ended up punching a door frame. I’ve got my equilibrium back now but I feel under tremendous strain. This situation is very likely to continue for weeks if not months and I’m worried that I’m not going to be able to cope if I’m having difficulties after only three weeks.

I’m telling myself that I have to keep it together for her sake but I feel as if I’m failing because she is suffering. I’m not managing to meet my own expectations as regards being there for her: I have work commitments to meet to make sure we have money coming in to keep the roof over our heads and make sure the bills are paid, so as much as I’d like to I can’t be with her 24/7. My employers have been very understanding and supportive and I thank them for that, but obviously I can’t be absent long-term and expect to still be paid after my annual leave has all been taken.

So I’m putting myself under pressure to care for my wife adequately, to keep going in my job, and also to try to help keep the household running by doing as much as I can. I try to keep telling myself that I’m not doing too badly for someone who has struggled to look after himself in the past. But I still feel as if I’m being selfish by taking time out for myself – some down time on my own to try to unwind and help myself keep going. I feel as if I could and should be doing more for my wife, but at the same time realise that I need to make sure that I am here over the weeks to come. I really can’t afford to let things get on top of me so that I overload. I’m worried as hell but I can’t let that distract me until the situation improves.