Since the moment we are born we are all encouraged to dream of a life for ourselves. An interesting life. A happy life. A productive life. But what happens when you end up with a life you never planned for or wanted? 

It’s not an easy question to answer and I certainly don’t have all the answers either. 

Who does have all the answers? Does the Dalai Lhama? Does anyone have all the answers to living? I personally don’t think so. 

Like every other human being on earth I made a life out of making plans and goals  and then modified them throughout my life as my nature, personality and opportunities evolved. 

I moved to different places. I took different jobs. I studied at university. I met different people. I formed relationships… I was a life unfolding and in motion… until. Until the day came when so many choices and opportunities were systematically taken away. 

It is hard for most people to even imagine what that is like. It’s even harder to try and explain it. Harder still to live it. 

I have heard the usual retorts from most people on this topic, including psychologists, and they range from “be grateful for the life you still have” and “you must not dwell on it; keep smiling”… But they are simply words and if you asked those same people if they would care to swap lives I am positive of what their responses would be. 

The retorts are simply ways to placate us into not talking or thinking about such difficult topics. To silence us… But it doesn’t really help like open discussion can. 

I remember a [friend] who felt so adamant that they would not accept any job that was not up to their expectations or beneath them that [they] would rather be penniless and unemployed than do just any job. So they didn’t. I often ask myself how that person would feel about being disabled, in a wheelchair and not be able to hold down any job let alone a prestigious one? How would their pride feel as they struggled to move, shower or brush their teeth without assistance?

I remember another friend sharing how they felt about their body image and the frustration of looking and feeling older. No longer at the peak of youthful beauty and youthful shape. They were no longer getting admiring glances across rooms as they once did. How might that person feel about the prospect of being seriously ill day in and day out? Never knowing what pain would come or worsen with each new day? How would their body image cope? 

You see those who are mostly well and quite able bodied can be so quick to diminish the suffering and losses of those who must fight and struggle for each little thing in their day… And I personally find this quite difficult to reconcile. 

I think that this can lead to broken friendships and relationships because there are such huge gaps in understanding and empathy. I truly wish that this was not the case. It is so very sad indeed. 

I never dreamed of the life I have now or the challenges I face. I don’t think I could even have imagined such things in my worst case scenarios or nightmares. But here it is! I won’t lie, and I will freely admit that sometimes I feel incredibly angry! I feel robbed and cheated!! 

I know many people who continue to drink too much, those who have done dangerous drugs and taken so many unnecessary risks in their day to day lives and yet they are walking the earth in relative better health than me! Am I jealous? Yes. Yes I am. 

I am sure these are thoughts and feelings that others in similar situations as me may also feel, or can at least relate to. I can’t be alone in these thoughts; surely. 

Do I wish illness and disability on others? Not. For. One. Second. Ever. 

When you have first hand experience of these things you wouldn’t want it to happen to another living soul. No matter how much they may have hurt you or disappointed you in the past. It takes true suffering and pain to know this. 

Am I being overly negative by admitting to these thoughts or am I just being truthful? I believe the later. 

I don’t spend my days looking for people to blame or hating myself for what has happened on my journey through this life, but I won’t pretend that it is the life or situation that I ever wanted or that I have become some enlightened soul that is now so serene and at one with everything. I am not! 

Most days I endure life rather than celebrating it. However when something enjoyable or slightly less challenging happens I relish every single second!

There are moments when I will enjoy something simple. Anything. Like a cup of coffee, a funny joke, a picture of a friend on holiday, a sunny day etc. but I won’t lie and say that this makes up for the loss of abilities, life and goals that I have been forced to accept. It doesn’t. 

When you become disabled or have debilitating illness you must retrain your mind and your personality so that you are not in a permanent state of grief and frustration. You have to learn how to feel something and then be able to let it go and pass through you, quickly, or you be sucked under like a wave breaking over you and dragging you down into heartbreak. 

Our bodies may not be movable or pliable but our emotions and spirits must learn to be. And it is so very, very hard to do. 

Some of you will be nodding, some of you may disagree and I suspect some of you havent the slightest idea what I am talking about. Either way I have always promised myself to make this blog about speaking truthfully and from my heart. My truth anyway. So I make no apologies when I do. 

This isn’t the life I dreamed of or worked hard for, and I dearly wish it wasn’t my reality, or the reality for so many millions of others, but if I must live it I want to do what I can to keep using my voice and the abilities I have left. To keep sending out messages that may help to connect us, inform people, help others, support each other and validate those out there who are also living with serious health issues. 

We deserve to have a voice too and we can. We still have our truth left so it’s now my goal to use it. 

Gentle hugs, 

Trish