All That We Are

Imagine a situation where the voluntary action of rising from a seated position is no longer available to you. You now require assistance from others for every activity involving repositioning.

This happened to me very suddenly and very recently, and it has made me think a lot about our lives and who we really are – outside of our physical beings.

As you may know by now I have experienced years of gradual decline in leg and arm strength due to Adult Onset Limb Girdle Muscular Dystrophy  inhibiting the ease with which I stood and moved around. And despite years of mentally adjusting to each attack on my physical independence, this sudden change hit me harder than I had anticipated.

It burnt like a bitch.

My upstanding inability (pun intended) also came at a time when Gaz was away overnight the following week. For the first time since I was pre-teen I could not be left on my own – for an extended period anyway. 

I spent the night railing at the universe and its part in my physical downfall, cycling back and forth through (what I later realised was ) the first three stages of the late Dr Ross Kublers Five Stages Of Grief.  She really had something there. 

I was afraid of what this meant for the rest of my life. What if all my supports went away? Can I ever live a quality existence? What extra financial and physical burden would this place upon us? How would I subject myself to being bathed, dressed and toileted by strangers? How could I accept this and still retain my dignity and pride?

This new reality was completely overwhelming and I have to admit I felt bereft.

 Waking with puffy eyes after minimal sleep I had finally reached some sort of acceptance. I am extraordinarily lucky and grateful for many people in my life but at that time, my niece, professional carer and trainee nurse, and one of the many great parts of my family life quickly became my lifeline. If I was going to overcome my fears and deal with this new lifestyle I had to ask her to switch roles somewhat and come and look after me. This wasn’t an easy decision but she made the situation seem very natural and in no way diminishing for me at all.

What relief!!

Since then I have thought very deeply and at great length about who we really are. What is our true essence? (Pretty sure that’s the fourth stage of the grief process). I am in no way unique and most people dealing with grief have followed the same questioning process. And sure there’s been the odd philosopher that’s had a go at it too. While Socrates is definitely not my middle name my personal belief – as the result of this introspection – is that we are the sum of our soul, belief system, personality and physiology.

With that in mind it is easier to accept that any physical declination does not diminish our dignity. It is easier to acknowledge that asking for assistance with the most personal tasks does not make you a weaker person.

As humans we, for the most part, go about our daily life secure in the knowledge that (with varying degrees of talent) we can sing, dance, run, cook, leap, walk, drive, climb. But we are not truly or completely defined by these physical attributes.

 Aren’t these actions performed simply by the vessel that encapsulates our real self? When the vessel – our body – cannot perform these actions aren’t we still our real selves?

When someone dies I find comfort in my belief that our relationship with the deceased still exists – it’s just taken on a different form. It’s in the dreams that you have or the internal reference back to them when making decisions and going about your life.

I feel that the relationships we have with the living and deceased are not based on how beautiful their skin is or how amazingly high they can pole vault but how they made you feel. It is the essence of that person – not physical attributes or achievements – that we recall.

The personality behind the actions or achievements is what really made them happen and what we really think about in those that we know well. The courage of one to travel alone; the selflessness of the parent to love and nurture against great odds; the warmth of a friend generous with their time; the humour of another; the sharing nature of a colleague enabling you to gain knowledge; the dedication of another that has resulted in discoveries and inventions that improve our lives; the dogged determination against physical odds of the physics genius that discovered black hole theory; the unconditional love of a partner when the “in sickness” part of the marriage vows kicks in.

I don’t think it’s rationalising what has happened to me  – I truly think this is what our beings are all about .

I am now confident that I have reached and surpassed the final grief stage, at least for now, as we have put actions into place to ensure my security and empowerment (details in a later blog post).

I know many, if not all, of you will be able to relate in some way and I would love to hear from you. And I hope this has helped at least one person to not feel as if they are “less than” and that there are solutions – you just must know you are worth it and reach out first sometimes.

Take care ’til next time,

You might enjoy this article: The Luckiest People

and The Carer Fix – For Those Who Could Care Less

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