I remember as if it was Yesterday, March 9th 10.20pm the last time I held Vicki in my arms, I never thought it could be the last time and that she would never come home, then the night Vicki passed away 16 days later, will be with me till the day I die.
Since Vicki passed away my own health has changed I now use my wheelchair more I also have an electric chair, and Vicki would be pleased that I use her lift more now, she told me to stop being stupid, and yes she was right most of the time.
12 months have now passed, the first few weeks were so difficult I couldn’t have got through without the help of my daughter and my 3 granddaughter’s (my girls) as I call them.
Nikki helped with funeral arrangements she chose the casket made from willow, quite fitting really as that is the name Vicki gave to the kitten we adopted 4 years ago. I was happy with the choice I also had a heart pendent for some of Vicki’s ashes to be put in, (she often said she would like her hands round my throat).
At first when I went out anywhere I felt guilty simply because I didn’t have to rush back home, I’m still the same, when I come home after a couple of hours away I still call out I’m home my darling, as I didn’t have the luxury of Vicki passing away at home I like to think her spirit is with me.
June 21st would have been Vicki’s birthday followed by our 39th wedding anniversary, so I decided to release 60 pink and purple balloons near to where we used to go on Cannock Chase friends and family came and it was a very windy day and raining, but as we parked up the clouds went and the sun shone, I opened the back doors cut the cord and all the balloons were gone in 46 seconds, a second for every year together.
After 3 months I decided to decorate the front room I chose the colours and am happy with the change, and so my life has also changed. Also I decided that because Vicki had battled for disability issues for 12 years the last 5 up to 2010 when I decided it was time to stop, from the bed that she was confined too, that I would do what I could to help.
I did not want the same to happen to others that happened to Vicki, it was a news letter from the hospital I was reading about MS society and volunteering, so I sent an email and waited, I also registered for social housing on the Isle of Wight, we thought about going to live back there but because of her needs it was a big no.
I am now a Neuro Champion for the Black Country Neurological Alliance for MS, MND and PD, I attend meetings road shows and raise awareness of Neurology, so many groups Health Watch, CCG, PPG, A&E Pt forum and trying to get a Neurology unit at my local hospital.
So yes my life has changed in many ways all but one I still talk to Vicki, the usual good morning and good night my love and I still say pardon me when I burp.
I have my immediate family and friends around to help, and my new twitter family, many are or have gone through the same loss and emotions as I, all affected by MS, MND, Cancer in one form or another, and all are a source of comfort and fun.
Can’t believe how quick the time has gone, and yet some days go by slowly, one thing I do have is a set of DVD’s of a video that Vicki did for The Open University in June 2007 titled Living with MS Veronica’s Story, one is only 5 minutes, other 3 are about the days filming, their is also an audio The Battle for Funding, I often put them on switch on and turn up the volume to the surround system and I can hear Vicki talking as I move around the house.
I can also see the effort that Vicki put into the day and the tell tale signs that the MS has on her that I never noticed then.
So the next few days will be a sad time, not because 12 months have passed so quickly, as for me it is no different, my feelings for Vicki are still the same they haven’t changed one bit, could I have done more, done something different, been more alert to her condition, I don’t think so, I knew it was inevitable I had seen 2 friends in the same condition as Vicki, they both passed away within I year of having a peg feed tube. It still doesn’t make it any easier.
Nikki goes to a spiritualist church for her own reasons, I’m not ready for that, I have cried in front of friends and strangers when I talk about Vicki its hard not too, and I cry a fair bit at home where no one can see, I cried each of the 8 times I had to take a pet cat to the vets to be put to sleep, disease is not just for humans pets have the same conditions, heart, brain tumours, cancer of liver and kidney, they are all buried in the garden along with some of Vicki’s ashes.
I’m not ashamed to admit I cry, for me it’s part of the process of life, I have been ice skating twice in my wheelchair no doubt I will go again, my girls love to go.
I don’t regret anything, I’m not angry anymore, I was so lucky that Vicki chose to spend her life with me, we had 2 wonderful children and a wonderful life together, our son played bass in a local band in the mid 90s we went to many of his gigs.
Yes I was very lucky to have shared my life with a truly wonderful vivacious woman, who over the last months decided to let her natural hair colour come through a red head again.
I look at my young 3 granddaughters the youngest Ellie-Mae she often asks do I miss nanny, before I can say yes Leah and Ashleigh say see you’ve made granddad cry, I tell them its ok, and if I do anything wrong Ellie-Mae shakes her right index finger at me just like Vicki did, she will say nanny with the angels, yes I believe she is, and yes I think Vicki would be very proud of them.
I often raise a glass to the memory of Vicki when out having a meal with our friend Lynda, on the 27th March I’m off to London in my wheelchair by train (my first train journey for over 40 years) what an adventure, for a meeting at MS society head office to talk about being a Neuro Champion.
All because I shared my life with a wonderful woman and a dreadful disease.