Christmas, loss, love & friendship and hopes for a better 2014.

Ah, Christmastime, eat, drink and be merry. I said BE MERRY, damn you! Peace, goodwill and all that.

2013 has not been the most auspicious of years for me. Actually it's really been quite horrid, with an occasional hint of a bright spot that has just about made it bearable. One of those included speaking at MumsNet Blogfest, which was quite a large bright spot.

My Blogfest session Photo: Anna Gordon

I'm not a religious person, but I am spiritual and to help survive the bad parts of this year, I've been trying to listen more closely to my psychic intuition.

In fact, something I read by Wayne Dyer the other day has changed my thinking even more. Dr Dyer wrote in one of his many books, You'll See It When You Believe It, that we are "not a body with a soul, but a soul with a body."

This concept has helped me enormously after the death several weeks ago of my wonderful friend Gulshanah. I understand now that she is not gone, but simply released from a body wracked with disease and pain. This does not, of course, make it any less painful for her family and friends, me included, that she is no longer here physically, but I have a peaceful feeling that I believe comes from her. It was incredibly distressing to witness, but I did my best to be a good and supportive friend and she knew that I loved her and will continue to do what I can.

So, life has been tough for both me and for my husband this year. This time last year I was acutely ill. A year on, my Ehlers Danlos Syndrome & POTs has become chronic with increasing joint pain and I am a part-time wheelchair user. If it hadn't been for the support of family and friends, including Gulshanah, as well as online groups such as RareConnect, I am seriously not sure that I would still be here to write this.

Another misery of 2013 is that my husband was out of work for five months and while it was devastating for our bank balance, having him around to rely on to take care of everything, and me, gave me a chance to rest, although a return to health isn't yet on the cards.

The losses, of a dear friend, my health, and temporarily, of our family income, have meant 2013 has been incomparable in terms of the amount of stress being heaped upon our heads. And of course, there are always the inevitable challenges of raising two Aspergic adolescents through the hormonal highs and lows of their teenage years.

Despite my illness, there have been people who still did their best to make life even more difficult for me, but I have been fortunate to have friends, both near and far, who have been there with good words and kind deeds.

I have learned that you must never underestimate the power of love, friendship and kindness. It has literally saved my life this year. Support, whether via a hug, a kind word, a thoughtful email, Facebook message or a Skype chat, or just by bringing me a cup of tea during a meeting so I don't have to get up, has made a huge difference. Even someone just thinking ahead to make sure I can get where I need to be in my wheelchair makes a difference and means I don't feel like I'm a nuisance or in the way.

If you have a friend who has a long term illness, a better way to show concern is instead of asking how they are, show them that you care about them. Asking "How are you?", means I can either say, 'Fine' (which is not true) or just shrug and give a wry smile, because I'm pretty sure that you don't want a lengthy run-down of how I actually am.

I'm hoping for a much better 2014 and that I can be a good friend to my friends when they need me and be well enough to support my family.

Although, as I said, I'm not religious, I have found that a particular passage from the Bible, I Corinthians 13:4-8 to be precise, can help us all with caring for others. You don't need to be a Christian to agree with it, either.

It's about love, but it goes just as well for friendship. They are also words I try to live by, though not, it has to be said, with total success at times. After all, I'm only human and far, far from perfect.

If you are trying to be a better friend or a better partner to the one you love, perhaps let these words guide you too. Please don't look at your other half and ask them why they aren't like this to you; just try to be like this to them and see what happens.

c: NotAsAdvertised2013

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In memory of Sonia, my friend.

Sometimes news knocks you sideways.
Today, just as I was driving home from lunch with my husband and feeling pretty pleased that I'd found a pair of black jeans that actually fitted me, I received a phone call.

My beautiful friend, Sonia

It was from the partner of an old friend, Sonia Robinson, who has been battling breast cancer for the past few years. He was calling to tell me that she had lost the fight earlier this month. She was just 46.
I have known Sonia since I was 19, more than half my life. We met when we were assigned rooms next door to each other in Halls of Residence in Tooting, South London. She was from Birmingham and two years older than I. I was from Warrington, an immature, know-nothing teenager.
We became friends, even though on the face of it we had nothing in common. We would sit on our respective window-sills and talk through the open window or go for a drink in the Student bar. Sometimes we would go up into the centre of London for an evening with very little money to spend, but we always had fun. On my 21st birthday, Sonia plaited my hair tightly into two so that by the evening my poker straight hair would have waves for our evening out. Times spent with her were always easy. When you did something questionable she would give you a 'look' but you knew that you were not judged.
That friendship has lasted 25 years. We were not in each other's pockets, and our contact through most of that time has been sporadic as we got on with our lives and families in different parts of the country. But we always sent each other birthday cards when we could - our birthdays were two days apart.
We were the kind of friends that could speak or see one another after months or years of silence and pick up where we left off. Still, I feel a pang of guilt, wishing that I had been more in touch in the last couple of years. The last time I spoke to her she said she was tired but recovering. Since then I have thought of her often, but always at times when it was too late in the evening to call or when I was out doing other things and something brought her to mind. I must call her, I would think. Now, it's too late and I am angry with myself for not being more organised.
Sonia had a son, who is now grown. She also had a daughter, who is the same age as my eldest son. I pray for them. I lost my mother when I was 38 and that was way too young. She was also taken by the evil that is cancer. To lose your mother when you are not even grown is unthinkable.
To me, Sonia was always a wise, stoic person. She knew how to have fun but I sometimes asked myself when decisions came up in my life, what would Sonia think of it?
She had a beautiful smile and there was a regalness about her that I admired. She had the most amazingly expressive eyes that could say so much with just a glance.
Her partner told me that she was cared for by a hospice in Birmingham called the John Taylor Hospice that included Macmillan cancer care. Just as I was starting to write this post, the doorbell sounded. It was a young man from Macmillan, looking for people to sign up to give monthly. It seemed like a sign, so I immediately invited him in and signed a direct debit monthly pledge.
I'll be sending an additional donation with my card to Sonia's family that will go to the hospice itself. I'm told they cared for her with dignity and that is all we can ask for when our moment comes.
I recently read a book about dying. The book, by Raymond Moody had charted many thousands of near death experiences, where people have been revived to tell similar stories of being met by loved ones, of seeing a bright white light at the end of a long tunnel and going through an all-encompassing life review. When I read that, I resolved to live my life so that I would not be ashamed at my own life review, whenever that happens. I am sure that Sonia's will have shown the love that she had for her family and the happiness that she gave her friends, like me and that her loved ones that had gone before were waiting to take her into their care.
My thoughts and prayers are with Sonia's family. Her partner of so many years, Trevor, told me she was at peace. I believe him.

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