So the big day of the 10k walk at midnight in aid of our local hospice , which I have to say has been so supportive of me service during the MND journey. So I packed up and left London and arrived home to sort out the evening , clearing up and shopping. A rest was out of the question as I was so excited !!!
Friends arrived Louise , Pat from a hard day at work and then Joy my lovely neighbour , Nicola my ever supportive niece, Cheryl from a day at work and putting her twins to bed, Fiona and Angie with cakes , puddings and the product of Angie’s creativity with her daughter, our northern star halos.. Brilliant !!!! Then Chris from work after sorting out her boys , she arrived with gusto and hugs as she packed up the wheelchair and finally Tracy with a still warm baked cake … We left after our faces were painted with stars and flowers to meet Lynn and Pete in the arena as drove past a heavy full moon.
We arrived at the venue to music and excitement , fancy dress and so much enthusiasm to support lost loved ones , employees of the hospice and people like me receiving the services of the hospice . I felt a lump in my throat as the back of the shirts stated ….” I am walking to remember ……. ” to be filled in … I thought that will be me soon !
We left the arena into a balmy night with a light breeze to a city centre of brimming with parties, celebrations , graduation balls, young couples, raucous night outs . We walked through the trendy bars, chic apartments over bridges of the canals, past the closed down shops though the night .
I managed to keep some limited conversation for a while with my iPad but mostly just listened to the chatter of my close and wonderful friends with a frequent wave of my hand as they suggested I get into the wheelchair which was our bag carrier !
The raindrops started to become heavier about 3 Km into the walk which was pleasant to start with, refreshing but then it become heavier and persistent as we approached Blackfriars. My back muscles were aching , hips grinding and fatigue levels overcame me so I relented to have a 15 minute ride in the wheelchair. This was a first time for me and just not acceptable as I became another person while I was in there.
We then approached Ancoats , 7Km as I passed the familiar venues I would have been drinking in a few years ago I was reminiscing and my thoughts drifted ,communicating at this stage was difficult as the rain was to heavy to use the iPad but I had got into a stride as my everyone was entertained me with monologues. I become so aware of the city at night as the hours wore on cuddles on the way home, people walking with stumbled strides, munching on burgers after a beer filled night like it was first meal for weeks , chatter about how to get home, young girls with summer frocks and smeared make up in the rain .
It was 8k as we approached the University of Manchester and my gait was heavy as I struggled to lift my foot up and decided on another 15 mins power rest up the hill as Pete pushed me, but it was cold as sat so I got up again and walk but that’s was fine as I had rested. As we approached the homeward leg I tripped over my laces and went flying but recovered quickly . By this time we were all totally soaked it didn’t really matter how much it rained at this point and no more rain could have absorbed into our already soaked clothes , our northern star halos were drooping around our heads . But I still felt vigour in my heart and the challenge was my fuel as MND was NOT going to get the best of me tonight !!! I was so determined. As we covered the final 2 k we all fantasised about our bed, hot baths, cats curling up next to us. We arrived around 2.30 sopping wet , aching and exhausted .
For me the main reflection of the night was the overwhelming support of people close to me, supporting me in my venture and the overwhelming generosity of family , friends and people I didn’t know at all but were inspired my blog or have heard from my endeavours from others . We have raised over £1650 and still more is coming in …….
A good cause but more than that for me it was a challenge, I am not going down defeated , this is just one of my fights while I can still walk but there will others fights too… As crawled ( literally) in my bed I had a warm fuzzy feeling about my ‘ team’ who are helping me retain my courage through this journey…. Everyone out there … Those walking with me and those supporting me , the generosity of time , thought, feedback and funds ….. Yes !!! my team are truly exceptional ! I shed a tear of joy as I went into another sleep of the hard journey and another day disappears from my grasp.
Living with MND 