The Hardest Part

You will know by now that I threw myself into this relationship with every bit of strength I had.  I chose to take on David’s care and I wanted to get heavily involved with sailing and rugby.  We have a fantastic life.  It’s very busy, often exhausting keeping up with him in fact, but we have a lot of fun along the way.

New York Skyline

Manhattan Skyline

I do need a break from it all, mentally and physically.  So I go and stay with friends occasionally, I even managed a week in New York and spent a lot of time in art galleries, shops, bars (I was with friends, not just sitting in bars on my own I hasten to add!) and walking around doing nothing in particular.  It was lovely to have my own space with no agenda; no one woke me up in the night needing me, I didn’t have to get up at a specific time, I had no cooking or shopping or cleaning to worry about.

But oh, I missed him so bloody much.  It was painful, I hated being away from him.  I missed his smile, his laughter, his stupid jokes (they are dire).  I missed him waking me at 3am because the pillow was wrong or a cat was asleep on his head.  I missed making him Bovril and pulling faces when he wanted Marmite (food of the Devil) on his toast.  I missed lying wide awake at 4am listening to him snore and wanting to punch him.  I missed his terrible singing in the car and his “eclectic” taste in music (Abba and Motorhead on the same iPod…..really???).  But most of all I just missed being with him, snuggling into his shoulder on the sofa, kissing him goodnight and believing that I have won every fricking medal in the world because he is safe beside me, and he is mine.

Whilst I may appear to have a ‘big’ personality, I have little self-confidence.  I struggle with my weight; it is apparently unreasonable to live on a diet of baked Camembert, custard creams, maltesers and Pinot Grigio and be a size 10.  In preparation for the wedding, I am spending a considerable amount of time in the gym trying to shift Jaffa Cakes from my waist and I’m in constant denial that gin actually contains calories.  So when I met him, I was surprised that my lumpy bits were of great concern to me.  After all, I was faced with a man who is almost completely paralysed, whose hands don’t work, who has scars and skin problems and is doubly incontinent.  I really shouldn’t have been hyperventilating that the sight of my wobbly bum would send him running (OK, wheeling) for the hills.  But I didn’t feel beautiful enough for him and I felt inadequate in ways that I cannot explain.  Being even vaguely naked around him terrified me and I was pretty sure he would instantly dump me on sight of my muffin top (not my actual muffins, mine are legendary-particularly my caramel and hazelnut ones which have reduced grown men to tears).  But we had found something greater than a relationship based on looks and body image.  We had found a deep, real, stomach churning, head exploding, perfect love for each other.  And it was completely mutual.

My own Mr Clooney!

My own Mr Clooney!

He makes me feel beautiful, amazing, clever, funny, brilliant and alive.  I still have issues with my own body image and inner demons, but I have found someone that has given me a strength to grab my life by the horns and live it, rather than letting it ebb away in a tide of cheap wine and bad choices.  I’m honestly not sure what I was doing with my life before I met him.  I know for sure I have never known happiness like this, or security, or love or deep truthful understanding.  I know I have met my person, and found my happy place, and that makes me bounce and want to scream from mountain tops!

But what if?  What if his broken, paralysed, slightly imperfect body gives up too quickly and takes him from me?  What if I have to endure nights when he’s in hospital, or no longer by my side? What if it all goes wrong one day, and no one can fix the problem and his blood pressure goes too high, too fast and it kills him?  What if any of those things happen?  What will I do?

Chicken hat?!

Chicken hat?!

 I can’t answer that; not only because I am struggling to put into words how much I love him and how much I need him, but also because I quite simply, cannot bear to think about it.  I like the ‘me’ that he has found, I like the way he makes my days sparkle and my nights pulse with happiness of what the next morning will bring me.  There are bad times, and sometimes when he wakes me in the blackest hour of the night, and I’m half awake trying to figure out what is bringing on the rising blood pressure and sure signs of AD, I question my ability to fix things.  Long after he is back asleep, I lie awake and worry; what about next time? What if it’s something too serious and I can’t fix it? What if it happens when I’m not here and the carer doesn’t hear the pager, or they just don’t know what to do, and they can’t fix it?  I love him so fiercely, I desperately want to protect him.  He’s very much his own man, and so cocooning him in bubble wrap and suggesting that being a world Sudoko champion, rather than a world sailing champion, are likely to be met with some derision.

Sunshine in France

Sunshine in France

The hardest part for me is the fear.  Not just the fear that his life might be shorter; but the knowledge that our life together will without question, become harder.  He has low bone density, his skin is thin, his circulation is poor, his lung capacity is weak: we cannot predict how these factors will impact on old age and fragility.  Every day I am thankful and grateful for having found him; I feel privileged to be loved and adored by him.  And whilst all of my fears are quite real, and understandable, I’m going to carry on living this amazing life with him and enjoying every minute that it gives us.  My only regret about falling in love with him is that I didn’t find him sooner; however many thousands of nights and days I spend with him, I wish I could have a thousand more.


  1. Carole Pangbourne

    Love is a many splendoured thing………enjoy!

  2. Darling Nicky, you are and always have been a beautiful woman. You have the most gorgeous skin and shiny thick lustrous hair. Just look at that photo of you in France! You’re beautiful inside and out. Keep writing… I’m loving your blog. Xxx

    Ps someone once told me that on the day of one’s funeral no-one present will be thinking ‘she was a wonderful woman; such fun, so kind, so interesting and a true friend… shame she wasn’t a size 10’.

  3. Nicky, that one brought tears but ony because i admire your love and strength, if only we could all take a slice of your passion for hope love and happiness we would all be better people. David has you, his daughter his friends and family that support and love you both, thats enough to keep anyone going for a very very very long time. Keep smiling gorgeous girl. X x x

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