Yesterday I left my house at the crack of dawn , well 7.45 am but that is crack of dawn post PSP . Actually I was up at 6.30 , force of habit over the past few years but I digress ,where was I oh yes leaving home to go to the PSP Carers’ meeting in London . I felt a bit apprehensive about going because I thought it would revive too many past memories but equally I was intrigued to put faces to names of people who had become my friends on this site . I travelled up from Devon by train and that in itself was an adventure . It passes through several different counties en route to London and as I gazed out of the window the country side unfolded itself on the warm summer morning showing all the different characteristics of the different counties . The great rolling hills of Devon evolved into the gentler hills and fields of Somerset and then into the almost cosy fields of Dorset and after that the massive plains of Wiltshire with vast fields of barley being caressed by the wind sending shimmering bands of silk in wave following wave . Then as we approached London I could see into all the back gardens of row upon row of houses :gardens full of children’s toys , barbecue set ups , trampolines swimming pools ,some immaculate ,some a jungle .
My fellow passengers seemed oblivious to all this ,heads down ,thumbs working overtime, or sitting ,eyes shut with things stuck in their ears ,what a waste . They missed the tractor turning the hay, the deer on the edge of a copse, the fox hurrying up the side of a field . Mind you it was a long journey and the train stopped everywhere Little Puddington , Middle Puddington ,Upper Puddington , Greater Puddington (actually ,you won’t believe this , I made those up but it did rather seem like that ) .
When I reached London I made my way nervously to the venue . I needn’t have worried . Being greeted by Amanda is like being swamped by an avalanche but much nicer ! It was everything I didn’t expect it to be . No sadness , just pleasure meeting people who I felt I had known forever. Talking of past times and future times , lots of laughter and a deep understanding between people who had been through and were still going through all the pain we have shared with our partners .Often no need for words or explanations .
Amanda deserves a huge thank you for making these meetings possible I would recommend them to anyone who can manage to get there as it is where you will feel a huge sense of belonging .
It all went too quickly and I had to leave and make my way home . The journey back was much the same as before , my fellow passengers absorbed with their gadgets whilst my gaze enjoyed the vista of the countryside softened by the evening sunshine .
My only sadness was ,as I drove home from the station , I wanted to tell Veronica about my day , but that couldn’t be could it .
Georgepa
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Georgepa
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Oh George it was lovely to meet you, i love these meet ups, feels like you are meeting up with family, first time was frightening, but so enjoyed it. So many things have happened from the first meeting, things move so quick, time goes so quick. Hope you will be able to do it again and again.
Amanda is an amazing lady, would like to thank you all for being there for me in this long journey. Love you all. Yvonne xxxx
Hi George, Lovely to see your descriptive prose again! Pleased the effort of getting into London was so worth while and up to anticipation! Of course!
Your train journey brings back memories for me too, especially the glimpses into London's back yards! Hubby and I used to travel by train from Woking each time we came to UK, last in 2013.
I still have a desire to join you all next year - no firm plans yet, but thinking June. My sister-in-law and I can then be together to mourn our losses - she her husband in 2014 on 25th (our wedding anniversary), and me mine on 29th in 2016. We share fond memories too of our last group visit together in 2013 when my hubby was not 100% but the death of either of them not even a thought!
Will be ready for a break by then! Have been up to my eyes in renovations in my older new house since mid-May. Still lots of redecorating to do!!
Have blown the budget, but am getting glowing comments from visitors - and it was what I felt needed to be done when I moved in! So, no regrets!
Yes, know what you mean, Geotge! Can't tell J when I get home, or show him what I have done! But I tell him in my head, and that I am doing OK.
His last thoughts were whether I would be OK without him. Has taken a while, but feel I can say "I am now". Even yesterday, 3 years on!
I loved your post. I felt I was right there. You have such a way with words...like a photograph, except sometimes better.
I have been to London from Los Angeles a few times...from Heathrow airport. The last time was July, 2013. My son, who died of PSP May 4, 2017, was with me, and so was my daughter and her family. A wonderful memory.
The way you feel about Veronica is how I feel about my son, Jeff, ...whose not around to call up and tell him something "exciting" or something others might find "dull", but not him. THANK YOU!
So lovely to meet you on Friday. I remember the first meeting I attended I so worried I nearly walked past the pub and kept going - I am so very glad I didn’t. Our shared experiences and acceptance of the reality of PSP/CBD is so loving and supportive.
Amanda without you this group would never have been born -huge thank you.
George i loved reading about your journey through the countryside I can now having met you, better imagine you sitting on the train taking it all in. I shall also hold onto your experience that the challenging days eventually turn into challenging moments.
If only our well partners could join in these get togethers but then without the challenges of PSP/CBD. we would not all have met online or in person. I maintain the only good thing about PSP /CBD is the wonderful people it has brought me into contact with.
Right then Georgepa so your comparing me to an avalanche are you?! 😂😂
Seriously though my lovely I’m so pleased and honoured that you made the journey and loving your description of your journey, felt like I was on the train with you!
I do agree with you for anyone that is thinking about coming along next time, try it, you can see how much everyone gets from these get togethers!
Georgepa I very much hope you join us again where I shall once again be in avalanche mode...😆😆
I’m sad though that you didn’t have Veronica to go home to and spill all your beans about your day but I’m sure Veronica is looking down on you everyday (equally I realise that probably isn’t any help) just remember Veronica is most definitely in a better place now free of this despicable disease
Well kind of an avalanche , an avalanche sweeps up all in its path in an energetic embrace , overcomes all obstacles etc etc . Seriously it was lovely to meet you , your earthy posts often made me smile . I tell you what if I was Fifty years younger and your very nice partner hadn’t been keeping such a watchful eye ,well who knows...............
Thank you so very much for organising it for us and for the spontaneous embrace as soon as I walked in that broke down all barriers and fears and was quickly followed by one from Kevin, who was such a support to me on the CHC pathway. I am going to do as he suggests and be strong enough to still attend the appeal because maybe it will help someone else in the future. Lots of love AliBee xx
Oh George, what a lovely description of your day. Yes, we do live in a most beautiful country with such variations, county to county and that route is just stunning.
I shall be making a similar journey in a couple of weeks from Gloucestershire down to Plymouth and I'm particularly looking forward to reaquainting myself with the stretch of line between Exeter and Newton Abbott. Sadly my journey is for the funeral if a young relative, taken far too young.
Thank you for sharing your day. One day I shall make it to one of the meets, but Chris' PSP is doing what it says on the tin, progressing!
It sounds like you had a lovely day out. I love the names of the villages in your imagination.
I can totally understand your feelings on returning home and wanting Veronica to be there. I do the same if something happens for me and want to tell Les. It's very hard but I am sure, in some way, Veronica will have been with you. Not quite the same but it's comforting when I think in that way.
It's lovely to hear that you all met and I can imagine the love you would all feel when meeting up.
I hope that one day I will do this as I would love to put faces to names, to be able to thank everyone face to face.
My Sunday started well thanks to reading your post.
Georgepa, it was so good meeting you again on Friday. When I read your post it bought a smile to my face and tears to my eyes. I used to read all your posts to Colin, because of that and your last sentence the tears rolled, but not for long. I also smiled at your wonderful description of the changing countryside which I could almost see as I read and even chuckled when you mentioned the thumbs going. It was the same in my train. How do they use their thumbs like that? If I try, I always hit two keys at once. It’s one slow finger for me. The closed eyes and ear pieces of others around me made me want to shake them and say, “Hey, look at those beautiful poppies”, or “Look! A huge solar panel field”. There was also someone across from me on her laptop and phone having some sort of business meeting very loudly, moaning about, I think, another colleague.
Thanks for posting Georgepa and for coming such a long way to meet up. It was worth it though wasn’t it. I can never get over how we all know each other the first time we meet. May there be many more meetings and I also thanks so much Amanda who, to me, felt was more of a duvet than an avalanche.
I’m still waiting for your book to come out (have you started it yet). Or maybe I’ll print off all your past seasonal descriptions and put them in a book just for me.
As always, just love your descriptive posts and you are so right, even the most perfect day somehow can lose its shine when the one person you want to share your news with is no longer there. Darned hard and doesn't seem to get any easier, eh?
It really is the most beautiful journey, isn't it, well at least until you hit the concrete jungle, but even that can fire your imagination if you let it. Like you I just can't work out how fellow passengers often seem completely oblivious to it all. I've done similar journeys to both south and north Devon and the route from Exeter to Barnstaple takes you through countryside, often on single track, where you feel you can almost touch the cows and I allow my mind to wander when the train stops at those sleepy little village stations where you are lucky to see one person getting on the train, a scene right out of Midsomer Murders. I always feel disappointed when the journey ends.
Your as always, wonderful description of your journey and in particular the rolling plains of Wiltshire, took me back to many journeys with Rod on the A303 to the West Country. Somewhere on that route along the 'massive plains' of Wiltshire we would stumble upon a seemingly endless field of poppies painted on a most beautiful blue sky canvas, a sight so spectacular it would bring tears to my eyes. Rod would always pull over and we would stand there with his arm around my shoulder, often in complete silence, just marvelling at such beauty. I will do that journey on 12 July with my children, son-in-law and granddaughter, en route to North Devon (Woolacombe), so I am hoping that field of poppies will be at its best. Rod is coming with us as we plan to scatter his ashes on the beach, a place that holds so many memories for us, including our honeymoon, and hopefully the kids will take me down to join him when the time is right. It's going to be hard and very emotional but I will find peace, I am sure, knowing I have fulfilled what we talked about over the years, even before Rod became ill.
So, the night before we travel, my case will be open on the bed and as soon as I turn my back my Millie will be in it displaying that face that says, 'move me if you dare'. It happens every time I go away! We are away for just a week and my niece is going to come in to take care of her but boy, will she sulk when I get back - she will have nothing to do with me for as long as it takes and even when she feels she is able to forgive, that disapproving look will still be apparent - I can almost hear her saying "think carefully before you abandon me again" - never fails to make me smile. Just to teach me a good lesson she will no doubt bring a mouse in and let it go, keeping me occupied for days trying to flush it out.
Amanda is just lovely, isn't she? When I first met her and her mum, Barbara, I can honestly say I felt I had known them both forever - kindred spirits sums it up who will, hopefully, be friends for life. One door closes and another opens.
Best wishes, Georgpa, and thanks for that lovely train journey, in my mind.
It's a wonderful feeling isn't it George, meeting up with kindred spirits who have all travelled the same terrible journey with their loved ones. I think we all felt that sense of dread the first time meeting others from the forum but it is lovely to put faces to names and chat/laugh with people who really understand where we are coming from. I wasn't able to attend the first meeting because I didn't have anyone to look after Ben for long enough but after he died I did meet up and some of the group still had their loved one, sadly some have now lost that special person. I will definitely be at the next meet up, I'm sorry to have missed this one. Love the description of the journey , I'm in Menorca with my family, very beautiful but I guess a train ride here ( if there were trains that is) would present a very different landscape to our green and pleasant land. Anyway pleased you enjoyed the whole experience.
What a lovely vivid description of your journey, since becoming a Northener 20+ years ago, I haven't visited the west country so much but have so many happy memories of summer holidays in that part of the world, especially Dorset. Thank you for sharing. xxx
Well once again George you have done it. Your way with words transported me on that train journey and I could see the beautiful scenery. Tears came that you were unable to share your day with Veronica, and this probably doesn't help, but she is in a better place, back to her beautiful self and not what PSP did to her.
Those with their eyes down and earplugs in are missing out on so much.
It was lovely meeting up with you and the others, nice to actually see who we are communicating with. Thanks for your great advice which I will heed, and for sharing your story.
Thanks for the lovely description of a day out. It was great to see you and some other " first timers " at last. Yes it was a very special day. Amanda should certainly feel proud.
Your traveling description reminded me of, when I was 21 and bought a Lambretta. I set off from London to Yorkshire. I sort of thought home would be sign posted and got into Essex before I bought a map. I drove through the lovely country side singing away and eventually arrived in Hull and told my family I had come through Chipping Ongar and Loose Chippings.
Like you, I would have liked to share the day with Chris. I feel he knew you.
Dear George. That is really lovely. Thank you so much. Several people have asked me what it was like. I should just let them read your post as I could not explain it better. My sister travelled on the train with me from Somerset and we too were able to appreciate the amazing countryside we have. Sadly the journey home was terribly crowded so very very hot, but there were still people standing using their thumbs !! It was worth every minute though and I agree that it is so wonderful of Amanda to organise it for us all. That cuddle when I walked through the door was so welcome and removed my fears about coming and it just got better from then on. I too used to read your posts to Nigel as they made me laugh and feel good inside and I wanted him to feel that way too. My photography could make him happy too even if it was only of a bee on a flower. At his funeral we had a slide show of photos that either he or I had taken whilst we had a quiet reflection time and some of those were of rolling hills or patchwork quilt landscapes. As I said to you on Friday I have changed since his illness began and it is going to take a long time to find 'me' again but I am not sure I want to lose what I have learnt and felt over the last few years because not only did I share his journey I shared it with wonderful people, like all of you, who were and still are, on a similar journey. It is just that I have 'time' now and that is so strange. Good luck. AliBee xx
Sweet to read of your trip through the beautiful countryside, George, thanks, as ever. I always wonder how that small island, so long inhabited, has managed to retain so much beauty. We here have so much space and seem incapable of treating it well.
I love hearing about the gatherings, though with the twinge of envy.
I'm doing very well - more or less, most of the time. I miss Henry. My mother, who is amazing, stalwart, and mostly good company, despite being 92 and with original parts giving out, lives with me now. I still like my job.
I had a lovely bit of serendipity last week. I, very unusually, turned on the radio while doing dishes after dinner, to find the public station was interviewing the new Commissioner of Inland Fisheries and Wildlife. Five minutes in, someone called in to ask her about coyote management policies and quoted Henry's testimony on the subject from many years back. It was startling and thrilling, and I felt so lucky to have caught it, although a neighbor did too and called to tell me. I was able to send a link to the show to Henry's kids and friends. Really nice to know his work lives on.
OK, some would say I have "moved on" or forward what ever you think. Personally, I think you just change your life to adjust to a new normal, that means accepting new people, a different way of life. Nothing can be worse than my last "normal", that sucked, even life with PSP was better than that! I have stopped feeling I am Steve's widow, now, I was his wife, but unfortunately no longer. Life for me, has to carry on and I am going to make the most of it!!!
Wow, what an amazing thing to happen. The closest I have got is, I saw someone who looked exactly like Steve a few weeks ago, even down to his scruffy green South Africain cap he liked to wear. Shook me rigid! I was with my Mum, who has Alzheimer's, obviously I burst into tears and she suddenly became my Mum again. Cuddled me, asked me questions, then was able to tell my sister everything that had happened. An extremely bitter sweet moment, one I will treasure.
oh, the emotional layers in that. Glad your mum was there and could comfort you. When my mother says I'm taking care of her, I tell her she is taking care of me, too, whether she is aware of it or not. She keeps me from despair - who has time?
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