I used to think that when I grew up I would know the answer to everything and that my life would flow smoothly as I would have nothing left to learn. It’s amazing just how wrong a child can be and how far from even scrapping the surface I am from actually knowing anything. All of us have a million questions daily, some small, some amazingly big, but in our minds at the second they appear they feel just the same. I never got the chance to do so many things in my life that I wanted to do, not because anything really stopped me but more because life just took over, time pasts and somehow those things just became unimportant. The places I wanted to go, the things I wanted to study and the jobs that in my heart I wanted to do, but I never had the qualifications to even apply, all passed and life replaced them with things that always felt smaller, but somehow more important. When I was 12 I gave up every Saturday to do extra classes in Art, I went to the local college a place I was convinced I would attend once I had completed school as I know what I wanted, it is if I am honest probably the only time in my life that I could answer that annoying questions that adults asked, “What do you want to be when you grow up”, I wanted to be a graphic artist. 12 was also the point when childhood ended and I discovered the truth about life, it just isn’t fair.
When I was first housebound and without a job, I thought for a while about starting some kind of business from home, but it didn’t matter how much thought I put into it, all the things that I knew I would enjoy and thought that I might just be able to make a living from, all had one huge problem, my MS stopped me from doing any of them. I had already discovered no one would employ me to work from home on their company data or IT systems. It didn’t matter what I thought of doing, there were barriers bigger than I knew how to get over or how to even face. It appears that it doesn’t matter what the legislation or IT systems that make it possible, companies still don’t want to employ people that can’t physically be where they can see them, even on a contractor basis. So I looked at what else I knew I could do, the only other options I felt I was good enough at were creative arts and crafts, with poor dexterity there wasn’t the slightest chance of anyone wanting to purchase the mess I would make now. It is one of the biggest things that I find frustrating about my health, that I can’t make a living.
From when we are really small, as I said in the first paragraph, we are constantly asked what do you want to do with your life, we are drip fed the idea that we are supposed to be productive people, to make a contribution and to be employed by ourselves or someone else. From the day I left school I did just that, apart from during my first marriage where my role was that of mother and housewife, which is a contribution but in a different way. That role over I once again worked, I once again made my contribution to life and I supported myself, building up to a job that meant I could do more than just support, I could be proud of what I established for myself in life. For all of my time married to Adam, I was the main breadwinner as he is 17 years younger than me and it takes time to establish yourself on the pay scales, but we managed to buy our home and to put together a home to be proud of. Then suddenly on that scale of pay, I was a failure, I was unable to produce, to earn, to make a living and that is as hard if not worse than being told that your health is on a downwards spiral with no way of stopping it. 50 years of indoctrination by family and society, isn’t something that just stops or disappears, it eats away daily telling you, you are a failure.
I was also brought up to believe that poor health wasn’t an excuse for not working, unless you are dying you are supposed to be at work, without fail, not once do I remember ever hearing that it is acceptable to not work when your health just won’t let you do anything. The system for me worked, I had learned all their lessons and I obeyed all their demands, I did what was expected of me, but what happens now? It doesn’t matter how much I have learned from living with chronic illness I still haven’t learned how to undo a lifetime of being told this is all wrong.
For those growing up now, I think they will find this step if they are faced with it in later life, easier, they now grow up with the disabled visible in their lives, schools and TV, I saw none. They are growing up aware of the problems, the issues and the lives of those who can’t for health reasons, can’t work in the traditional way, an alien concept in my life. But for my generation, well I expect we all struggle, but it’s not our fault, we don’t know any different and accepting that what we were taught is wrong, well it just doesn’t happen that way. I believe that I will always struggle with this, that I will always have this feeling that I should despite everything still be earning a wage and still be doing what I was brought up to do, working.
Please read my blog from 2 years ago today 17/03/12 – Traveling with the flow
I don’t know how others write but I don’t always pick the subject I allow it to pick itself. I sit here and I type, delete and type again the first sentence. Once I am happy with that, I let my mind flow in the direction it chooses and the subjects that appear. Someone the other day told me that me writing was well structured, which made me laugh. In general the structure is probably the last thing I think about. These are the post which also seem to attract the most comment and the most…..
Each day you get up and inspite of the pain and great obstacles you keep trying and you keep going. That is work. You write a blog each day and share with others so that they may better understand what it’s like and for those who do understand you give comfort in that we know that others do understand. That is work. I don’t call this failure at all. Thank you for your example.