Summertime, and the living isnt easy

We have been lucky as a family to have some trips out recently. My wife has been able to join us, despite her failing strength. This has been great for the children, they have both finished school, and the time together is a brilliant way to unwind, and make memories.

My wife has a blue badge, which means in the UK she is classified as disabled, and we can park in more accessible locations, and sometimes get better access to things we need or want to visit. Over the last months she has become noticeably more disabled, frail and weak. I always felt before we were judged because she could walk unaided, but now she does need help getting in and out of the car.

Her arms and legs look much thinner, and the muscle definition has gone. In some parts of her body you would think she only has bone with the skin hanging off. I am always put to mind of the harrowing photos of famine victims, with the lack of food causing extreme weight loss. Only now do I realise that a disease can have that same exact impact on a body.

She still walks with us, but after a week of trips, her ankles have swelled terribly. I presume this is due to her circulation not being good enough, and gravity then takes it course, pulling the liquid in her body to the ground. She isnt in pain, but I imagine it cant be a pleasant experience.

The children are great, and help where they can, above and beyond what they should have to do. We havent yet used a wheel chair, as we feel that may be a step too far at this stage. She isnt sick enough to be invalided, but with no treatment plan in sight, despite recent positive scan results, it can surely only be a matter of time.

I hate the feeling of having an invalid wife when we are out. Everything we do takes longer and is more visible -just the effort to get out of a car takes much longer than for anyone else. She cant see where to put her foot, and cant see where to hold to steady herself. You can see people pitying us, watching and waiting, almost tutting, while a seemingly young family struggles. No family should have to put up with the struggle of having a loved one unable to do some of the very basic things a human should be able to do. You feel under a spotlight.

And the tolerance in society has gone as well. People will just quickly stop their car in a disabled spot, not realising that my wife or an equivalent needs that space to get any chance of having a ‘normal’ existence. People push past, hurrying along, not noticing they have elbowed her in the face, which she couldnt avoid as she cant see out her left side (a real event that happened two days ago, leaving a nice large bruise on her cheek, thankfully not a broken bone).

I hate it, and she hates it. Mobility and independence was snatched away from her, with her dignity not far behind. Imagine being able to drive, having a full time job, a partner, children, fulfilling hobbies outside work, only to have those things taken away, while hearing how your friends careers, holidays and sporting endeavours are going. I struggle to cope with that, and cannot fathom how she doesnt go mad with anger and envy.

I find summer particularly hard, as everywhere you go there are happy families and friends, out and about, enjoying the good weather. Couples will walk hand in hand, not to lead one partner along the path, but because they just want to. Parents will sit on a bench to watch their children play, not because one of them is out of breath from walking 100 yards from the car in the sun.

I get jealous of couples. They have what I want, but have no way of getting. Date night, meals out, even a drink together in a pub beer garden. None of these happen in our lives. A physical relationship is long gone, never to return. On a selfish note I worry that this disease has taken away my only chance of happiness and love. Sometimes I would give anything just to have a hug from the wife I married, let alone anything more intimate. To feel her arms wrapped around me, and not be worried that the sheer act was hurting her. To feel her warm body against mine, and not have her ribs and shoulder blades digging into my chest. To hold her, and not worry about crushing her like a small bird would be the most amazing feeling.

We have been lucky to have many years post diagnosis with my wife. 12 months was mentioned at first, and we now have seven years. We have tried to make memories, and tried to enjoy life the best we can. But part of me does wonder at what cost. The stress and strain for me and my children when the inevitable comes, on top of the years of worry. Would a short illness have been better, is a question we should never ask, but the long term impact on us, plus the suffering my wife has had make me wonder in my darkest moments. To end in the same place, despite all the treatment and care, seems really cruel.

Summertime, and the living is easy, goes the Gershwin song (here in a Lana Del Rey version). But really, it fucking isnt for lots of people. Its hard, and uncaring, and a battle for many to deal with.

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