The week started very well as my friend Joy came to paint … We were able to share a laugh as we created designs time for my Christmas cards, I appreciate the company of Joy we are content in my silence but I feel she is beside me. In the afternoon I took Joe and Alex to Dunham Massey, an autumn frosty twilight when the sun is low and the shadows are long. The colours are intense as the sun lights up the world like a stage with intense light.
I then went to meditation, staying silent is so hard with all my drooling and coughs and the horrible noises I make with my throat..it wasn’t conducive to me or others so I left.
Tuesday was a bright sunny day as I ventured out on my own and headed for the countryside of Cheshire there was dark overladen purple clouds in the sky but the sun shone through with a beam of light to illuminate the rusty leaves hanging on to the tree branches. I moved to the slow lane to appreciate the moment. I arrived back in time for art class but I was so tired and I nearly closed my eyes as the teacher was explaining the task … He must have noticed as he raised his voice ” Lindsay which painting do you associate with ? ” I felt like I was 10 yrs old again … He knew I couldn’t answer …..
One night last week I went to bed and woke up after a couple of hours with a very frightening spasm in my throat area. I was completely ignorant of the potential of this happening. I couldn’t breathe for about a minute, it was like an asthma attack so I looked it up in my pocket MND guide. So if you have bulbar onset be prepared, it is not as frightening when you know what it is and that it will pass. It’s larynx spasm and it only lasts a minute and your breathing will return so relax as will be worse when you panic.
The weekend was started with the the twins 4th birthday party .. I was able to put the food out and taking photographs but I was very conscious I couldn’t communicate with the kids. It was lovely watching them giving their all to keep still in musical statues, queuing with anticipation to get their tattoos and pirate hats, squeezing into a place where they can sit next to the best friend regardless of the gender.
My brothers and his wife came up from down South to give me hug, we took him to a local craft fair. On Sunday, Ruth came by and we took Joe and Alex to Sizburgh castle as they said they had a Christmas market .. It was three stalls in the shop so a bit disappointing but we wandered around the garden and then went on a boat trip around the lake. I was so conscious that I was hungry as I hadn’t had food since 7.30 pm everyone was eating bacon sandwiches,chips and coffee with biscuits .. It’s so hard when you are hungry and there isn’t really a place to feed .. Ice cream was hard to find in the winter months. It was worth the trip as the light on the water was highlighted the shallow waves on the lake and and when twilight came and the sky became pink and lilac the lights of the cottages and hotel by the lakeside reflected in the water.
On Monday I became a landowner as I paid the deeds for my grave plot, I wondered what will become of graveyards in the future … I think southern cemetery is a wonderful place with ancient trees, marvellous sculptures and reflects the seasons .. I used to run through the graveyard at the weekend to get to Chorlton water park … When I went there it made me feel so alive .. maybe when we are miserable we should take a visit and maybe we can appreciate our lives more. When I came back I felt my tonsils biting back but I ignored them on Tuesday morning when Ann came around and we decided to go to Martin Mere … You really must go if you haven’t been there before ..I am not a twitcher but the are some splendid sights such the feeding time in the late afternoon … Nature is so organised in it’s little way especially this image of swan lake .. I guess as I am getting weaker the world glitters to me and I want see as much as possible but the cold wind got to me and as I walked around I felt my tonsils fighting back and by the evening they were two sledgehammers in the back of my throat …..
Since my last blog I spent a lovely couple of days in my spiritual place, Silverdale with Pete, he was good company and thoughtful as we really relaxed, I had a short walk in the woods nearby which was full of the majestic gold ruby leaves. Beech trees are my favourite as they looks like golden confetti. The paths were strewn with myriad of scarlet, ochre, and amber leaves. In the evening we settled into the night as we lit candles and the wood burner and discarded our shoes for the comfy couch as we watched DVDs and played scrabble.
When I returned home we had a cultural feast with Hugh Masekala (thanks Ruth) … We went backstage and he gave me a big hug and asked if we wanted a photo .. I was so excited … He has been a legend for me for many many years … Tim would’ve loved the evening as he spoke about his interaction with the jazz greats Dizzie Gillespie, John Coltrane, Fats Waller, Miles Davies, Billie Holiday and Nina Simone. A night to remember for certain …
Friday was busy as I made a four course meal for the friends who did all the grafting work for the MND event as a thank you … It was good evening as they included me in the conversation well, they were so patient with my typing as tapped out stories.Sitting down with people while they eat has become a norm for me now.. Somehow I don’t mind if I cook and I can see their reactions to my cooking .. I guess I get pleasure from others people’s pleasure. So I can tolerate watching people eat now. That has come about by a twist of my mindset.
Sam arrived early evening and helped with the preparation as I was so very tired .. I managed it though. The next day I was up early to deliver 3o apples pies to the Buddhist centre bring and buy sale and then went into Manchester to visit the Christmas markets. It was uncomfortably full so we retreated to a coffee shop with a wonderful view of the Christmas cheer below and caught up with each other.
As I walked the streets I was thinking that really didn’t think I would be here still to celebrate another Christmas. So I took in all the festive scene as Sam carried my bags and communicated with the shop assistants. I was very tired though and on my way hime had another fall in the middle of the road again !!! this time on my knees which is better than my face !!
That evening I went in a state of despair .. Living with MND has it’s drawbacks as my mouth was painful with biting my cheeks and gum disease as I have pools of saliva in my mouth. I get reflux which burns my oesophagus and is so uncomfortable, my legs were stiff and sore when I walk I am always dribbling, my feeding tube stoma is over -granulated so it bleeds and sore when I try to put food down. I just wish I could have a hearty meal with my boys and converse like I used to instead of feeding from forticip at the kitchen sink. Sometimes it is hard to cope so I went off and had a warm bath and cleansed myself of horrible destructive thoughts.
I was feeling very tired and a hit low when I set off to Buddhist centre for a day of meditation to celebrate the full moon on Sunday morning. When I arrived I was warmly greeted and just felt I was in my spiritual home. When I started to meditate a warm feeling came to settle body and mind. I felt comfortable to participate within a group discussion with my iPad for the first time. Just being with gentle and kind people who just accept me and didn’t judge me made the day relaxing for me. Although I still get so embarrassed when I make these funny noises when I exhale my breathe. The vocal chords seem to join with my expansive yawning and I sound like a wonky musical instrument. I wish it was under my control but it doesn’t so I just hide my shame.
Sometimes coping with the symptoms of MND is so hard, but when I crave for little things like eating the taste of chips soaked in salt and vinegar seeping into the newspaper to warm me up on a cold night or singing along with a choir and letting my heart sing out. I now realise when I have a craving thought my head I can now acknowledge it , if I nurture it will just make me feel miserable. No matter how much I want it I cannot reverse these symptoms they will get worse rather then better so I have to enjoy today.I have to just accept my lot and let things go, which I am getting so much better at, but I must admit it can take a time to rectify my errors on occasions.
Its Monday afternoon now I have just returned from the optician who was concerned about something behind my eye … I was getting excited that I might be misdiagnosed and I might have a brain tumour instead. The irony of MND is that I wish I had a cancer of the brain … How crazy is that? .. Anyway it was nothing, the back of my eye is fine … I didn’t tell him that I wished that something was there. So another week living with MND.
The news of the typhoon in the Philippines entered my consciousness on the radio, the devastation of this disaster. How can they cope ? One day they were doing normal things digging up their vegetables, now they are digging mass graves for their loved ones, the smell of fresh cooked food is replaced by the stench of decaying corpses. Instead of calling their children to come to tea instead they are screaming in despair for their lost children amongst the debris. They have no beds to climb in when they are tired,instead using their last energy to make a shelter to protect them against the tropical rain while they are stunned, shock, bereaved,hungry and thirsty as they have nothing to make their life make sense.
When the story is unfolded I felt so redundant except to send money to help their aid which is slow to reach them. Meanwhile they are having medical procedures without any anaesthetic in makeshift hospitals and searching for food amongst the dilapidated streets and getting water from burst pipes which are full of bacteria in the hope of surviving.
My world in comparison is so privileged as my sons are healthy and have hope for their future, I cannot envisage what is must be like when you are holding your child and the typhoon takes it from your arms to drop from a height to death. There are no words to say except the dead are in peace now. To those with both emotional and physical torture they appear to have hope and they will get there lives in order from this chaos in time because the human spirt is so strong.
Hope is something I lack,I have hope for others. The aftermath of the chest clinic stayed with me for a few days. It brings the reality of terminal nature of this illness. So much time has passed when I got my provisional diagnosis. I am lucky to have this ‘knowing time’ to fill my days with joy, connecting with friends, and appreciating every day in it’s own beauty. Something which the Philippines are robbed of as those 10,000 dead was unable to say goodbye over time, which is hard for the those left mourning.
This weekend Helen I was fortunate to spend time with an old friend who I trained with over 25 years ago. It was lovely to be in her company as we watched films and painting stones and visited the Grayson Perry exhibition on Manchester Art Gallery. Fatigue is the worst thing as I wanted to show her all around the city but I ended up sitting on any available chair. Another lovely couple of hours this week was when my Buddhist teacher visited me with hugs, flowers and genuine compassion. MND has brought to me such kind and sincere people into my life.
It’s 8am on Tuesday, I am sitting in comfy bed in Silverdale with a view over the estuary, rose tinted clouds are in the distance over the calm sea and I feel relaxed as I have no deadlines, no appointments to attend, I just need to pick up a book and maybe walk around the bay and as I mediate my thoughts go out to the other side of the world which is in a chaos. I wish them hope and peace in their hearts.
My destination earlier this week was Silverdale, an old fisherman’s cottage with a view over the estuary, with lines of silver where the sand meets the sea water like satin ribbons placed towards the horizon.The streams of water meanders towards the sea carving out the sand like a linocut. It’s an ever changing landscape as the ebb retreats and flux advances, always active despite it’s apparent calm. I relate this to my MND as everyone presumes I am peaceful and my symptoms are stable but living with the experience of MND is very different as I am not always peaceful or stable as every day I am coping with various uncomfortable and painful symptoms which challenge my independence and most important to me compromises my dignity. Bulbar onset is not apparent on the surface as I have mobility and have function in my hands, it’s all going in beneath the surface like mental illness. Some days the sun shines on my landscape and I am at peace but other days I must tackle the misty days and I have to fight through sinking sands. The hills in the distance are my goals but I wonder if I will ever get there as it seems such a long way and journey is limited to time and energy .My family and friends are all by side to pull me out the sand when I am sinking but regardless every day the waves bring me closer to the full tide and I will drown.
We drove past the dense autumnal woods, the sun was was going down and it gave the golden shade to every leaf, the branches being silhouetted with the vivid pink rosy sky as an aftermath of the golden nectarine in the sky lighting up the dusk and reflecting in the water as it weaves it’s way to the horizon.
While I am in this beautiful place, the time rushes through my hands like the sand, I try to capture every moment but it’s out of my control, we can’t retain the seconds we live as every moment becomes instantly a memory . Photographs and painting can capture the experience in order to reflect but we can’t bring those precious moments back. One of the aims of this blog is to share and reflect with others the beauty of this world but we have to be prepared to let ourself be free of the normal mundane domestic routines in life and cherish the small moments.
My son Joe asked me the other day if MND had changed my life, as he thought it has freed me. I replied with a retort “I would have liked to have a few more years “. That question whirled around my head and I think he is right as I have had the opportunity to be free, to be creative,to slow down my life to notice the little things. To enjoy resting without the feeling of guilt that I need to do always to do something.
To those who read this and have been diagnosed with MND, having time to slow down is good, we can’t control the tide that is coming in to swallow us up but we have time to let our lives go gradually which might be hard for us, but it is better for the people we love.We can leave the superficial world and get down to what is important to us and there is time for us to adapt to the tide and how it effects our bodies. We can be angry that we are young to die or question why me? but that won’t change our circumstances. Another way to look at is we are on borrowed time. If I didn’t have the monster tube I would be dead now, and so I have some more time,an extended holiday and I have the option of wading out to meet the waves.
Yesterday I came back from Silverdale for an appointment at the Chest Clinic, the consultant was best consultant I have met,he gave me time to speak, no rush and tried to make my experience of MND more easy. That means I must take my cough machine from the wardrobe and use it every day regardless of gagging to prevent chest infections, and I need to have an assessment as in-pt for breathing now. I hope that I don’t need a ventilator soon. There is a waiting list so I can envisage this will happen after New Year hopefully. Today I have to my monster tube changed as it is the wrong size, the dentist pales in to insignificance with such a procedure. I will be will brave and focus on the autumn leaves from my bed which are going a rusty red as I compare then to my earlier blog ….
Every morning I look out of the window and have this image before me from my bed.The leaves on the top of the cherry tree are now going a rosy amber, as they still cling onto the branches with the background of sky blue as we approach the last days of October. When I was a occupational therapist and did therapeutic art back in the old days. I facilitated an expressive art group and to get to know people in the group we depicted a tree which describes us … I joined in the group and I recalled painting a broad sturdy trunk, and wide branches which bore full deep green leaves in the full ecstasy of summer months with two saplings nearby as I had two baby sons then. If I were to draw that image now I would paint autumnal leaves like this photograph but I guess the leaves would have blotches on them depicting some sort of internal disease but the leaves would still be abundant and the trunk would be still sturdy and wide with deep roots grounding me in this whirlwind with the saplings fully grown.
I met Sarah from London this week, an old friend from the days of samba dancing and went to visit the old house at Dunham Massey with tombs of polished silver, hanging candelabras and basic servants quarters but mostly we chilled while we swapped stories of our life. When I was preparing meals for her I bought some deep orange and speckled yellow squashes and flesh coloured butternut with it’s golden succulent flesh. Vegetables are so beautiful with the smooth textures and vivid colours, cooking with such wonderful palettes is a work of art. I guess my reaction to not being able to eat is to cook for others.
My wonderful dietician Helen weighed me and I am now back to normal weight now that I have accepted food via the monster tube, which is a success. I am pretty stable at the moment apart from the throat which is feels very floppy and the horrible noises I make. It’s worse when I need to be quiet such as in meditation groups, in a film , in the car …it’s especially worse when I with strangers as it sounds like I am just about to vomit …it’s awfully embarrassing !!!
Last night was ok though as I went to a music venue Band in the Wall to see an old Samba percussion band ‘Inner Sense’ which formed in 1991. There were over 30 players playing such a diverse range of instruments, the music wrapped around my soul as the melody off he Brazilian percussion weaved in and out of the beat of the serdo which is the large drum which controls the beat. When I joined the samba school in 1993 it was my highlight of the week, I used to dance out my stresses and it was replaced by ultimate joy in my heart. I could dance for hours without stopping as the beat dictated your body … I danced in streets of Manchester, Liverpool, London, Belfast, Barcelona in nightclubs, weddings, music events, carnivals and parties. The Samba School was like an extended family and I met many lifelong friends there, we shared our sorrows, joys, excitement as we traveled to far flung places. I haven’t been so a few years now but when I saw everyone dancing to the familiar beat It was very bittersweet as I couldn’t chat to them and couldn’t dance , once again I felt like a ghost in the dark watching on …..
It was the MND clinic this week, it was the nurse led clinic which is fine as the time is relaxed and I can chat with my iPad at my pace with no one observing and no one is examining me for my deterioration. I don’t mind students being in the clinic but I think it could be arranged in a different way so the patient doesn’t feel like an object to be examined. Some suggestions about medication to address these gaping yawns, that are so painful as I bite my cheeks when my mouth shuts. It seems my blog is now around the MND team, I wonder what they think of it?
Darren came around to set up my Smart TV as I am not smart enough to operate it. My sister bought me an Apple TV component to synch with my iPad in the hope that I could use my ‘Speak it’ app and the words I type could be displayed on the TV so I can have a conversation with my friends and family in a room and everyone can see what I am writing. How wonderful is that? So anybody with MND who has lost speech I really recommend it, if you have a smart TV you just plug it in. You can also show your pictures and have Netflix and play games and write your blog form your iPad.Thank you so much Darren.
As I watch out of bedroom window every day I observe the tree tops of a cherry tree as the leaves are turning to an ochre yellow as they bow to the autumnal gusts of warm wind, the branch is getting less dense as they fall off one by one. I hope to see the busting buds in the spring.
I took Ali my MND friend from Chesterfield and Alex, Joe’s girlfriend to Tatton Park to see the stags, it was a warm, wonderful day as we sat outside but the stags were at a distance as there were loads of people around the park. It was good to see Ali and she looked so well for someone with MND, but maybe driving around was not good as couldn’t speak in the car !!! I still have to learn lessons !!!
My sister, Ros came around, bless her, she organised a meeting at the Southern Cemetery to meet with the most helpful person Cliff … He was so accommodating and sensitive and made the task so easy . The sun shone on the lanes of autumnal leaves, as the wind made the scene like nature’s confetti, it was so beautiful, I am always amazing at the beauty of this graveyard. I don’t find it morbid at all, it is place of peace where people visit their cherished memories of people important to them. It is a place of homage where the memorials of hundreds of people are all personalised,different cultures respected, wonderful inscriptions, flowers laid down with respect. I chose a plot next to someone who died in the Munich disaster in 1958, he was a journalist. It was a bit surreal choosing my final resting place but I coped well because of Cliff’s demeanour and the bright autumnal day and my sister beside me.
The weekend involved a visit by my nephew Andy and his girlfriend Amber. I always think her name is the most fitting name as her warmth exudes her. Joe, Sam and Alice kept them entertained and it was lovely hearing the lively conversation. Being silent I feel somewhat passive although I had many conversation with my iPad but sometimes I felt like I was a sprit in the room. In the afternoon my step mother, Pat and my sister Ros and Alec came before they left, we had a relaxing hour, painting stones and catching up. I was also aware of my appearance with my dropping cheeks, the ever sense of dribbling like a waterfall I cannot control as my tone my lips have gone , so no kissing is possible but the embrace hopefully is suffice to communicate my warmth to them. I have no pride in my appearance now and I just hope that people close to me will remember my former self. Ruth was by my side all day, helping me cook, supporting me win conversation and just being a close friend.
I have booked a few days in my wonderful, favourite place in Silverdale so I have something to look forward to. I cannot describe this place with justification it is a such a captivating place will I will try in my next blog.
I have started craving normal food like warm toast with a helping of crunchy peanut butter dripping off the warm seedy bread, crisp green lettuce leaves with peppery watercress,fresh ripe tomatoes with a touch of balsamic vinegar, black olives and white creamy feta cheese and dipping croissants as they melt in your mouth with full flavour coffee on a Saturday morning,
I am aware that these cravings just bring me more suffering, so distraction is best and when I am around food I have learnt to enjoy the smell and texture of food and enjoy cooking for others to get pleasure. I am aware that I cannot taste food so my friends might have bland food !!!
My friends and I are creating so many distractions to overcome hard thoughts and make life worth living. I have been so fortunate over the last two weeks instead meeting friends and having a meal, or drinks in the trendy bars of Manchester we have been doing much more cultural things. It all started at the Lowry with Louise and Ruth to see a wonderful performance by the Ballet Rambert. It featured a beautiful piece called ‘The castaways’ , funny, unique and innovative incorporating Yiddish music , jazz and rap. The Royal Exchange was next to see ‘All my sons ‘ by Arthur Miller, written in the late 40s which depicted the greed after the war… thank you Lynn. It was amazing performance by an all black cast. Then Nicola my niece took to my favourite composer Sibelius alongside the dramatic Rachmaninov and genius of Beethoven by the Halle at the Bridgewater. Hall. The violins were brought my heart to the beat of a butterfly as they played ‘En Saga’ about the forces of nature, you could imagine the iced landscape of Finland,the wind whipping up as the sun thaws the winter snow as huskies ride you between the mountains.
The cultural fortnight concluded with Captain Fisher a real thriller story and so well played by the Somalian actors and their desperation to fill their bowls against all odds.
Over the week I have had some precious moments. Paul who did my garden came around to tidy it up and he brought a seed pod from a poppy, it was the most wonderful, delicate thing, the structure was completely perfecta a a snail had munched through the walls exposing the structure which was unique geometrical design by nature. During a walk with Jane in the Ness gardens I picked up a broad brown sycamore leaf it was also perfect with raindrops which glimmered in the sunshine. I then went to Tatton Park with Chris and heard the full on roar of the stags mating as it is now rutting season. The way they stride about the park showing the moulted antlers ready for a fight, it really made me feel alive in the heart if throb of nature. We then went to the gardeners cafe which was like Betty’s tearoom in Harrogate with doilies, china tea cups and waitresses with aprons but no queue. I suggest you go before it gets known. On the way back from the Bridgewater Hall and the cinema I saw the heavy autumn moon low in the sky against a backdrop of the Manchester landscape with wisps of clouds wavering around it like a silk scarf.
Yesterday I drove Joe with his photography equipment to his new studio , three flights was a struggle but I had to see it … It was wonderful , with white bare walls old fashioned windows and waiting to be inhabited by creative juices. It’s the centre of town but quiet , perfect for anyone dropping in for their head shots. So his newfound business is running now so if anyone wants a portrait or two go down and support him. As we left, a traffic warden put a fine on my car which was parked in a disabled place, I couldn’t have an argument with him as he walked off before I could get my iPad message to him. It was rush hour and the traffic was dense but since I have learnt to look for the positives I noticed the delicate beech tree saplings along the Mancunian Way. The wind was blowing these bronze and ochre leaves across the cars leaving a filigree pattern all around. Something like that just calms you down.
We are so lucky being in a city that is easy to get around, with amazing historic buildings and new designs like the area around Spinningfeilds, we have also beautiful landscapes nearby like the Yorkshire dales, Cheshire gardens and castles and the hills of Lancashire all at our doorstep . We have education at our fingertips from Chinese societies to knitting circles. We have technology, sport, arts, countryside, lakes and seaside accessible in a day. Most of us have cosy houses and plenty of food. I guess I am in place when I still can appreciate what is around me, yes I have MND and can’t live to old age but I still do a lot with the rest of my life. The problem is packing it in!!! So more adventures …here we go …. Sorry this is a long blog but I have so much to say. So what are your special moments since I last wrote?
When I was diagnosed with MND I started a journey. My first dilemma was leaving the routines of my life, I needed to learn to let that go gracefully. My next task was to equip myself with a sense of spirituality, strength,honesty and determination.
The initial path was gentle as the symptoms were mild, I found a path that I could stroll along with others through green pastures, sheltered woods and abundant sources if food. While I was on this path I started to appreciate everything before me as my senses became acute. I danced through the fragrant bushes, tall trees of silver, bright leaves giving me a sheltered canopy at night with the chorus of the birds. I tasted all the succulent and delicious fruits. As I was meandering I related all my stories of life and expressed my joys and fears to the companions who travelled with me. The days were bright, and the warm sun rays warmed up my flexible limbs as explored my environment.
When I realised I was on this uphill path and when I reached the summit and there would be no return. I had to prepare myself with a means of ending the journey if it became impossible. I didn’t want to stay in a hostile place for too long and also I didn’t to want to jeopardise the safety of those who volunteered to accompany me.
The path gradually left the woodland and green fields as the landscape turned to moorland. The banter with friends was sparse as we left verdant and fragrant foliage into an expanse of bracken, gorse and heather. We carried on the well marked path which gave me a sense of where I was treading. The clouds began to gather and the sky was every shade of grey. My appetite was blunted with monotonous, bland food which I needed to carry with me, it was a burden that laid heavy on my shoulders, but my fellow travellers took some of load. As the night approached sleep became disturbed and I couldn’t acclimatise to the cool damp moors. During the daytime there was still a beauty of this wilderness, the were every hue of green and purple, the breeze was warm and clouds gave way to sun beams which lighted up the rusty moorland. I felt so alive with clean air my lungs and song in my heart if not on my lips. My words to others ceased but I was still able to communicate basic thoughts. In the distance I recognised travellers like me were walking the same path some before me and some behind.
I noticed the path was leading to the mountain range in the distance. The climate was getting colder and shivers were running down my spine, the mist occluded my vision and I felt lost. My fellow travellers were with me and offered advice, support and motivation to continue as they placed small manageable goals within sight. My walk turned into a limp as my muscles were wasting and one day I fell down a gully, this fall made me realise my weight was too heavy for my legs, my muscles were tired and taking so many steps became problematic. My pace slowed down and I needed to stop and rest often. The landscape was turning into a dramatic backdrop and my heart was beating faster as I was submerged in an amazing beauty of the highlands. The shades of subtle colour of alpine flowers were illuminated by shafts of bright sun as the clouds moved across the sky. The snow topped mountains were covered with a cloak of mist in the distance. The lonely call from an airborne bird could be heard overhead.
I was breaking the silence by my rasping chest in rhythm with my breath. I cannot manage a cough so I need to rely on technology which was another load on my back as I trudged through the wilderness. I felt alone with my painful back, cramps in my hands, muscles spasms in my neck and spasticity in my foot. My team of travellers were still beside me, giving me warmth and a sense of awareness of my surroundings, reminding me I still have a valid life. I had a real vision of the last stage of my journey now, the summit where I was going alone, everyone else would be returning to their own worlds.
This is a journey everyone will take one day, maybe they will be taking by a plane and dropped off at the summit, maybe the will be alone in walking this path,maybe the path towards the summit is short maybe it will be a very long path like mine but everyone will reach the summit one day. We are all on this path but many don’t realise that they on it and don’t appreciate where they are. I know some people try to return to the valley and green pastures they look back with a longing instead of being in their reality. I believe it is how you walk this path that makes the difference.
I will post you on my journey to the summit in due course, but although I am orientated to my path I really can’t be anywhere else but in the now .
Blog 5 – Do it now !
I have been home for a whole week it feels odd staying at home all day, so I need to set little projects to keep myself interested in life. I have decided to design a calendar for 2014… proceeds to MND,write up by PhD data, plant bulbs,make messages on pebbles to give to strangers that look fed up with life and also to work through my bucket list so that means learning to play ‘ Summertime’ and reading Middlemarch.
I now need to carve out a role, I don’t want to adapt a patient role as it is so easy when you have a terminal illness. I want to be useful to society and fulfil meaningful activity, so I need to use my occupational therapist skills as I am now trying to grasp the straws of my new role. I believe that my role defines me. I feel adrift now from the world of work, and I must challenge the feeing that I have now that MND defines me.
I look at my calendar, it is predominated by clinic appointments with a few friends visiting me, I so miss my work diary which planned out my daily schedule but it is now up to me to plan. Although my days seem short when you haven’t many of them left and so I have sense of making the most of them with meaningfully activity.
My daily occupation was around preparing food, home made soups and casseroles but now I have abandoned oral food now as it creates too much fear of choking. The advantages is no shopping, cooking or washing up!
When life seems monotonous I usually plan exciting things to look forward to, an aim, a goal, something challenging. I am contemplating a writing course or maybe a long train journey to an unknown destination, I have to be creative as I can’t plan anything with lots of energy expense they have to be passive events, so ideas please.
I don’t think we appreciate our mobility when we have it, so if you want to climb a mountain, run a marathon, dig an allotment, DO IT NOW while you can.
My regret is not skiing down the slopes with the sun beaming down with the chill of excitement down my spine, travelling to Kerala making a route through the rain forest with pungent scents, collecting Monroe s in Scotland and relishing the meal and the wonderful feeling of fatigue, galloping on a white on the beach as the waves reflect the colours of sunset, walking the Pennine Way and meeting strangers as I stroll the gentle valleys and hills, the list goes on and on ..life is about making treasured moments not dreaming about the things you want to do when you retire …as it might not be possible!!! Be brave,be creative and look at what is your priority now…