More jottings on living with MND

“Freedom is what you do with what’s been done to you.” 
Jean-Paul Sartre

Despite living with MND, I’m fortunate in that I still retain an albeit limited degree of freedom, a freedom all too soon denied to many. Gone are the days of spur-of-the moment decisions to just ‘get up and go’. Instead, any physical activity requires some degree of planning and forethought. Yes, I’d love to be able to get out of my chair, wander into the garden, sit under the shade a while until I decided to do something else, just because I felt like it. This kind of spontaneous approach to living is natural and has been with us since we decided to waddle across the room on our first tentative steps as a very small child. To have it rudely taken away is annoying and frustrating in equal measure. So, what to do?

Because it has started in my legs MND has meant I am no longer independently mobile. But I am fortunate that I have the use of aids to help get me about. Although she may balk, probably rightly, at being included in the term ‘aid’ the truth is that my greatest is my wife. Without her all the physical aids would as like as not sit idly by waiting for someone to stir them out of their torpor and make them do the job they were put there to do in the first place. As it is, together we can transfer me from bed to perching stool, from perching stool via Zimmer to stairlift, from stairlift to wheelchair to riser/recliner and so on through my day. Especially I can, with her help, get from the front door onto my mobility scooter which she brings around from where it is stored in the garage. Once on the scooter I am free, free to go where I want – provided it’s on paved surfaces and within the scooter’s battery range! Weather permitting, I take the family dog on his morning walk. He’s good at trotting alongside the scooter until I can let him off the lead to have his own freedom to run around on the local parkland. Yes, I do clean up after him because I’ve bought a poo-picker that actually works. I could tell you where I bought it but you would probably be AMAZ..ed to find out.

Lockdown has added to the frustrations of living with MND but has also turned a negative into a positive. I had a regular monthly visit from a podiatrist, to look after my feet and toenails. That had to stop.I had a regular two-weekly visit from a lovely lady who massaged my legs, a real help with circulation and a lovely feeling of relaxation. That had to stop.My local barber came to my home to cut my hair every four weeks. That had to stop. Now my daughter has become my manicurist and pedicurist, my masseur and my barber (number 4 all over). I dread to think what I would look like by now without her stepping into the breach, probably enough to frighten the dog!

Freedom for me is recognising the opportunity to make a choice while I can, yet accepting the limitations imposed by MND. So it was that yesterday I decided I would go down to the sea. I wanted, in fact needed, a change. I love being at the seaside as much as our beautiful countryside. Not the hurly-burly of resorts but the open spaces, the green gaps, that thankfully still exist along our West Sussex coastline. I count myself fortunate that there are pavements, footpaths and roadside, from my home all the way to the greensward at Kingston Gorse. With my mobile ‘phone dutifully tucked into my pocket (just in case), a bottle of water (“you really do need to drink more water”) and a packet of crisps (no ice cream van where I was going) I set off on an absolutely brilliant afternoon.

A clear blue sky, not a plane to be seen, less traffic than normal, the sound of birdsong on the country lane and there it was. Maybe it’s just me but there is something life-affirming about taking the time to sit and look out to sea, the endless horizon, to feel the fresh breeze, the warmth of the sun and the sheer openness of the vista. Adding to the pleasure was to see so many others also enjoying themselves. The sense of partial release from lockdown was almost tangible. I felt privilege to have the opportunity to be there, to have the freedom to be there, to have time to take it all in and, even if for just a short while, not to be bound by the strictures of living with MND.

Once I was home I sat in my armchair and promptly went to sleep. Well, I didn’t say I could do this without getting tired but I reckon I slept with a smile on my face.