Blog 42 – A solitary tree

I went to Richmond, Yorkshire, it’s so beautiful, crystal waterfalls, quaint shops with delicacy from Yorkshire and grassy ruins. We rented a cottage with a clear view of the Norman castle …the stone is yellow ochre and shines in the twilight. Joe and Alex took me to the dales, it was dressed with purple heather and rosebay willowherb. I saw a solitary tree, wind blown and defined and I engaged with this tree, sometimes I feel isolated as nobody knows my combat with MND.

We saw the returning waves of the sea on the east coast in the village of Runswick Bay, which was full of houses with red roofs and a wide sandy beach. We went to Newby Hall near Ripon I love that garden as it has a river through the gardens and it’s so exotic and it has a peace within it. It’s only 90 mins from Manchester and it’s child friendly, as they have boats and a large adventure playground and Zimbabwe sculptures. Sam brought me Downton Hall and we watched it together, it’s a good researched series as it incorporates the social history and it defines the gap between the social class. It was good to have a day with Sam and Joe we went to Saltaire, it’s was a sunny day with a breeze which make the trees bustle we went to the Salt Mill and viewed the Hockney and browsed art books while I smelled, spicy trumpets stargazers liliewhich was abundant every corner of the mill. I am overjoyed that have lived the past 18 months to see Sam get his exams, see him graduated and see him enjoy creative activities. He has been committed to his friends in Manchester and London and they are walking beside him. Joe is set up a business and renovated the studio and he has for confidence, he is a sincere partner, compassionate father and faithful friend.

I haven’t written for a while as I am struggling with MND. It’s take an hour to have a shower and another hour to feed my monster tube. I try to focus on the moment and keep my heart open to appreciate every day but I have been very unstable as my both legs are wasting, they are like poles with no muscle and my hands are like a claws when I flex my fingers they cramp. My consultant said I have weeks or months … That could be two weeks or 12 months !!!! MND is a sword of Damocles, it’s foreboding like a sword in a cover and it’s maybe come out and kill you anytime.
When I walk I get breathless but I can still enjoy the moments, the smells, the fresh air and by family and friends who visit who help with chores.

I need alone time too, to process my thoughts and meditate to rise my mood and reflect on the reality of my life. This illness is so long, while I was functional I managed the speech loss and inability of eating and drinking but my function is going down a dark , grim tunnel . I come out of the tunnel at occasions, we had a indulged evening with massage, nail varnish and henna and fragrant candles. I thought my friends enjoyed it but after I go down the tunnel and it’s deeper and deeper and soon I can’t come back into the air.

So appreciate the life on the surface before you go down the tunnel I am in. Smell and taste the food you eat, take the pleasure of swallowing comforting hot drinks and refreshing cold drinks. When I am a public cafe or restaurant I realise people don’t taste the food they just stuff their food into the mouth as I used to do. Observe the seasonal time notice the vegetables, fruit and trees. When you speak consider your words, speak positivity process your anger, and make people smile. When you exercise, pleasure yourself you can stretch your muscles when you walk and hold your head up and appreciate that you hold objects to look at the beauty.

Blog 39 – Find your river

Blog 39
I went to a wedding last week, it was my special nephew, Andy and his beautiful partner Amber. Sometimes when couples get together I am sceptical but Andy and Amber are so matched.They are creative, ambitious but they have the feet on the earth. The wedding was wonderful Amber had a sincere and humorous vow and the gospel singers were brilliant. I only went to the ceremony but I came back with Ruth later. I got upset as I couldn’t eat with them and chat with my family and get to Ambers family too. When I went back later I changed my thought process and stood strong and got a grasp of myself, nobody wants a unhappy women at a wedding! When I saw Sam and Joe I was really pleased as they were relaxed, smiles on the face and enjoying the day. It was a memory bank so I danced with Sam and Joe and put on silly wigs and friends of Amber came to talk to me. After two hours I was exhausted so we went back and babysit for Ava .It was a wonderful and emotional day as I was saying goodbye to some of family. Went I went back I realised my MND is nearly in the final stage , as my breathing is laboured when I walk , I just need to walk to the end of the garden and I am exhausted, my heart pounds and my shoulder is painful now and my hands cramp up when I use them, perhaps it is the heat,

Love is a really rooted emotion and it’s binds another person to you …rings,weddings are superficial …the enchanted love and vows really matters. You can walk together on the river of life or can separate…..that reminds of a song I heard recently “Find the River ”

http://www.youtube.com/watch?v=HBNfkj7Io78

This song,especially the lyrics focus is appreciate the river, It is the natural, wonderful and vibrant source of your life maybe you can go to the city and party and travel but when you come to the river it gives you contemplation, reflective thoughts and rest. It can be a reality or analogy. I am ‘ walking by the river mouth or estuary now and it is going to the sea and I will soon join the spirits of a mass consciousness, maybe Tim is there. My river is the Mersey as my hearts beats harder when I beside the Mersey. Maybe you will have pretty river maybe the Thames, Wye, Avon or The Ribble . You might be miles from me but the water will evidently comes to the sea. So appreciate the stream and the fresh crystal water and the tender plants like sedges and wild garlic or the mature river and the sturdy bridges and flow of the water or the estuary which makes marshes as the river is transforms to the sea and my moon is shining brightly.

Tell me where your heats beats harder … For me it’s the Mersey, the Caldrew River in Caldbeck, Glenuig,Scotland, The Atlas Mountains , the Pennines, Berlin , Harris , South Africa that’s is a few magical places ….. It’s a wonderful world we live in but we think we are by the brook and we have years to go ….maybe you need to you everyone will to go the sea, so walk the river and don’t meander too long .

Blog 40- Open the door to your mind

I had a wonderful weekend living with MND ….. Ruth came around on Friday and we watched a film, cosy with candles and foot massage. I got up late and Pete texted me to go Liverpool to see the enormous puppets …….I was in a dilemma as I am so tired at the moment but I am living so I gave a deep sigh and I got ready .

It was easy journey but warm as the sun shined on us .. We sought a car park and I got into the wheelchair and Pete pushed me to James Street where the three puppets were assembled from different streets. We were waiting on the traffic island for about 90 mins but the marshals cleared the island!!!!! Pete pushed me across the street and met Frenchman from the company directed me to a prime place where the press accumulated. While we waited everybody was excited the children were jumping up and down, and the talk was animated and the friendly Liverpudlians were chatting with Pete to inform of the puppets last night.

The grandmother came in a wheelchair and she took a letter of prose from the dog the Frenchman read the details of World War II from a Liverpool perspective. The gestures and expressive was so real. I felt the grandmother was reading my countenance. The dog ears were propped up and his tongue went out and in.
When they went down the street they were enormous at a scale with the buildings . I was so excited and my smile was broad. I hate the wheelchair but it can take me to lovely things.

On Sunday we went to the jazz festival to see a choir, the last performance again I was at the front. It was lovely to be out and about. When I got home I was exhausted but Sam came home it was lovely to see him we just chilled out with Joe and Alex. Wonderful weekend but I paid for it !!!

When you have decided refuse things in life and you justify your choice and it sets in your mind. I have to change my mind when I am tired, my days are short so I need to relish every moment. I have to have courage and spend fun time with people I love. So when you decide and it’s firm look out of your door of your mind and see the world outside and be brave !!! Life is for living not to be timid and stay in your mind.

I am writing while the I am listening to the WW1 ceremony in Glasgow, so many died in young years, in love with girlfriends, respect for the parents, close comrades, loved siblings, new parents. Many people was missing and hope for them to come home and days and days the light of hope diminishes like a in coming tide but the tide turns and it withdraws like hope.

I think of Gaza, children have died who have no idea of politics, appalling deaths in hospitals, schools and refugee camps. It’s disgusting that the bombs are killing infants, children, teenagers and young mothers.. When was it acceptable to kill children in war ? I can’t understand the sorrow and anger when your child dies, I am fortunate that I haven’t witness the death of child. I know friends and family that have have buried their son and daughter … I light up a candle today for the parents who have lost their children and today I will give will give the thought to them and loving kindness.