Sense and Spirituality ~ trying to cope with catastrophe
Being the wife. husband, partner of a person who has suffered this kind of huge physical trauma, particularly when it’s totally unexpected, is stressful beyond the understanding of others.
Friends and family want to help and say things like ‘look after yourself’ and ‘you need a break’, when all that you want to do is be with the one you love and do everything you can to help them. It’s understandable that others are concerned for you – and rightly so as, if you’re flattened you’re no use to your downed partner – but they can’t possibly put themselves in your shoes.
I’ve been so fortunate to have made contact with several marvellous people who have had experience of this particular injury in one way or another, and all of them have been of help to me (see ‘People who have kept us afloat http://bit.ly/LlgsoV).
However, faith can take a sizeable blow when you’re on your knees with grief and despair. You can’t help but wonder if there’s a God out there and, if there is, what he’s doing to help.
At the beginning of this ordeal with Bob, I contacted a distance healer called Malcolm Price. I saw his name in a copy of Ireland’s Own magazine, called him, liked him, and he began to pray for Bob. The night he began to pray was the beginning of Bob’s pneumonia improvement. He continues to pray for Bob and I am grateful.
As time went on, though, my faith – never terribly sturdy (up until now there hadn’t been a situation that I had so little control over) – staggered, tottered and fell as I battled to find a way to get Bob into assessment and rehab as soon as possible. If God had done what I wanted, Bob would have been assessed in February 2012 instead of staying in acute care for four months longer than necessary.
Today (10th June 2012) I met somebody who re-ignited my belief in a higher power and who brought me comfort in a way I hadn’t expected. Her name is Helen Parry Jones and I heard of her from a very good friend of mine who had consulted her in a time of need. I thought of Helen about two months ago but didn’t act on it until the end of May: got her name and her number and determined to meet with her.
Helen greeted me with warmth and concern, and comforted me with insights into my own feelings and those of my husband. She is a healer and spiritualist who, whilst carrying out her calling with professionalism, also exudes genuine kindness and love. She consoled me by honestly stating her opinion of our situation and passing on messages of love and support from those who have gone before. Her advice was practical and insightful, and she offered to continue to help me if at all possible.
I am hoping to see her again before too long, and am sorry I didn’t go to see her sooner. We sometimes don’t know what we need until we get it.
(I got her autobiography ‘Hands of an Angel’ and am almost half-way through it after 24 hours. It’s a fascinating look at an incredible woman).
Making the impossible part of your life ~ Isolation and loneliness are the major enemies of the primary ‘carer’ or advocate in a situation like this: small talk is impossible, socialising out of the question. Your routine is smashed to pieces and all the things that were normal to do just yesterday are now irrelevant and unimportant. For the first time in my life I found myself envying people: cycling home from the hospital I’d feel tears running down my face but people were still walking around, crossing the road, shopping. How could they do that? Didn’t they know that our lives were destroyed beyond recognition? Of course they don’t and why should they? I’m sure they’ve got worries of their own. But this huge cloud hanging over your life changes everything.
However, you can’t make yourself do things and it’s best not to. Instinct is important at times like this and if it feels too hard to attend a lunch or get-together, then it probably would be.
Personally I find that being at home recharges my batteries. The risk for me is not taking enough time to rest in-between visits. Recently I’ve been staying later, sometimes not getting home until 3.30pm and heading back out again at 5.15pm to get a bus (don’t cycle in the evening). That time between visits is important to get some space for myself so I’ll have to be stricter.
Occasionally I’ll meet a friend or the family for lunch, but it will be people who know what’s going on and don’t mind my wittering on about Bob. I did go out one night with a friend but felt like running home after an hour: I found it hard to watch others enjoying themselves. Sorry, but I resented it. I’m actually a very gregarious and outgoing person and love having fun and socialising. Bob would be more private, and given the choice he’d opt to stay at home or socialise with his family on his nights off. So I’d go out, meet my mates for lunch and contentedly toddle home to a happy husband who’d have spent the afternoon playing the guitar or reading.
Christmas was hell – would have cancelled it if I could. We’ve always loved Christmas, and turkey, and Bob would eat a huge dinner and an hour later go picking at the carcass. He’s not like that with food normally but loves his Christmas dinner, and we have photos of our tree every year. The only tree we had this year was in his hospital room – a small pop-up tree with extra lights and a little clingy Santa to hang off his bed. I spent Christmas Eve night in the hospital, they let me stay over until Christmas morning, and I held Bob’s hand all night, or his arm. Then I came home and went to bed to sob myself to sleep. Ritamary bravely tried to comfort me by saying ‘it’s one Christmas – next one will be different’ and while I knew she was right, it was still the most awful time.
The man he was, the man he is ~ Talking to some of Bob’s friends after this incident was very difficult. A lot of them remember him as he was maybe 30 years ago, before I met him 27 years ago. They – and he – have changed, as do we all over such a long period of time. The man I know is someone who was revealed to me gradually over time, and because I was interested in him and how he thought about things he let me in and shared his ideas and dreams.
It was hard to explain to some of his old acquaintances or colleagues that he wasn’t necessarily the man they would have known: he is happier now, and more content and relaxed. My feeling is that intrinsically we’re all the same on the inside: we all want to be loved and accepted as we are. Bob is forgiving of my faults, will not bear a grudge and doesn’t make a meal out of the stupid things I do. He always just gets past things and loves me anyway. He stands up for me when I need him to and never lets me down. So of course I reciprocate that as much as I can.
Bob’s a proud man with an intelligence that can cut through any argument if he decides to go that way. He is also a graceful person, although there’s times – because of his slim build and height (six feet) [as Suzie Salmon used to say ‘there’s no doorway big enough for Bob’ ] he can seem rangy.
His humour is self-deprecating, particuarly with me because he can trust me, and he can laugh at himself quite easily once he’s comfortable. When I met him first I made the mistake of thinking he was vain – because he’s so good-looking – but I could not be more wrong. He actually let my mother cut his hair once, over my shrill protestations, and didn’t mind the result. He simply didn’t care.
He doesn’t suffer fools gladly, though, and can be quite forthright when others would tiptoe around a situation. He’s a stickler for good manners and is quite old-fashioned in that regard. Bob can sit and think for hours at a time – something I find impossible to do – and I tease him about his ‘rich inner life’, but I believe it’s true: he will think for hours and then act on whatever it is he’s been pondering.
Bob loves antiques and family heirlooms: our home is littered with bits and pieces that we inherited, and he can’t throw anything out. There are two huge decorative plates that his mum left him and, although they are chipped and quite unattractive, he hangs them up and admires them. They’ve been in the cupboard for a few years but I’m sure they’ll make a reappearance at some point in the future.
He’s the most loyal of people too ~ nobody can sway him if he cares for somebody. Particularly in family situations, he doesn’t stop caring just because someone stops caring about him: his love isn’t dependant on how other people feel, he’ll care anyway. And try to make it good. He’s a brave soul, putting his feelings out there in the hope that they’ll be understood and reciprocated.
He needs lots of love and thrives on affection. Not demonstrative by nature, Bob has always accepted that I am affectionate and has become the most willing recipient of my gestures of that affection. He and I never walk down the street not holding hands. I hug him anytime I want to and he will smile.
For his birthday one year I got him – or rather, the grandchildren – a birthday cake (an oval ractrack with three icing ‘racing cars’) and was stunned when he looked at it and said ‘I don’t know when I had a cake…’. I got him a cake every year afterwards and he thoroughly enjoyed it. It had never occured to me do something like that before, he’d always said he didn’t want a fuss. Grandchildren are a great excuse for this kind of thing, aren’t they?
Besotted after all this time ~ I don’t have a problem with the fact that Bob is the centre of my life, nor have I ever denied it. His sister Ritamary teases me about ‘spoiling’ Robert (and he grins), but I just want to make him as happy as I was. ‘Was’ being the operative word here. He is happy with me. We’re alike in a lot of ways – both argumentative and opinionated, determined and single-minded – but it shows in different ways. One thing I know for sure is that neither of us ever doubted the other’s feelings. I’m not diminished in any way by doting on him, I love doing it. I’m still an independent person who does exactly what I want so it was a win-win situation for me. I guess now it’s standing to us: I will go through every obstacle to his treatment, and I’ll do it gladly.
Trying to rationalise ~ There’s no way to make sense of something like this: a man who is mainly healthy goes in for surgery and ends up with severe brain damage – it’s any person’s worst nightmare. Nothing can prepare you for it. I can’t bear to think of the two days before he went in for surgery because they were full of precious moments which make me cry every time I think of them. So when someone says: ‘what was he like before the surgery?’ I feel like screaming ‘he was perfect! Absolutely perfect!’ And he was. For me. To me.
I broke my right arm a few years ago and couldn’t lie down so had to sleep on the couch. Every night Bob would help me get settled and then go to bed, exhausted from all the stuff he had to do (bathing me, shopping, cooking, housework, etc.) I’d wait ‘til he was in bed and then I’d cry because I so wanted to go back to normal and be able to go to bed. I didn’t want him to know I cried. He was very surprised when some time later I told him. Now I think: he was right, it was only a broken arm…