Are we there yet?

Anyone with kids will know these words, the dreaded words from the back seat on a long journey:

            ‘Are we there yet?’

Children get impatient quickly, even a short journey feels long to them. I guess that’s no surprise. They’re young and have little experience of life. Each year is a big part of their total experience, which means each day and each hour is significant to them, it feels a long time. As we grow older the years become a smaller proportion of our live. At two, a year is half their life, at 50 it’s a fiftieth. So, the years pass quicker and quicker.

The years speeding past doesn’t mean we don’t feel pain and difficulty. It doesn’t take away that sense of time dragging when we are bored or feeling that pain will never end. Time is still relative to our mood and experiences.

I realised the other day that I have been ill for about 29 years, with a 2.5-year miraculous remission between May 2015- Jan 2018. That’s a long time, a very long time, over half of my life I have been ill. I have missed family weddings, funerals, christenings and parties. Those years have passed both quickly, because I can’t believe so long has passed, and slowly; painfully slowly.

I have heard the expression, ‘life isn’t for wimps.’ I think that applies more particularly for illness. We don’t choose to be ill or disabled, but when it happens, it toughens you up. There is a grinding, interminable, wearing, mind numbing and very painful part of long-term illness; it just keeps on and on. I was watching a Hollywood movie the other day, ‘Hercules’. In common with all these types of movies, the hero had to overcome the enemy. There was a limited time for his pain and suffering, yes it was years, but in the end, he won through. Chronic illness, which to clarify means long-term, just goes on and on. You may say, yes but you had a remission of 2.5-years. I did and all that does is make me more aware of what I am missing. Anyone can put up with pain and suffering for a limited time. It’s when it is unending that true heroism comes.

Illness and disability are the greatest challenge humans face. Greater than space travel or climbing mountains, greater than building skyscrapers, greater even than overcoming global warming. How can I say such an outrageous thing? Because illness and disability affect a person at the point before, they can achieve anything else. If scientists working on global warming were struck down by a plague, the research would end. If astronauts training for space had a car crash and lost the use of their limbs, they couldn’t do the mission. All our achievements start with our human ability to do them. If we ourselves are limited, then we are either stopped completely or limited. Of course, so long as only some people are limited others can create and make equipment to help and provide support and care. But the point is that those of us who are limited have had a massive loss and need to make major changes in our lives to adapt. The longer term the illness or disability then the more life changing those adaptations are. It’s a huge challenge we face when we first become ill or disabled.

All those who have had to make these adaptations to their lives go through a grieving process. There is loss of the old, anger, frustration, a lot of tears and after a long time, eventually acceptance. But acceptance comes at a cost and all those of us who live adapted lives also live in a strange new world that is hostile to our needs. It is not deliberately hostile, in fact many people without limitations would think that the world tries very hard to adapt to us. Until they try to live in it within a wheelchair. Anyone who has lived in this world in a wheelchair knows what a hostile environment it is. This world was not designed for wheelchairs. Steps, stairs, cambers, bumps, narrow doors, narrow gaps between shelves, high counters, sharp angles, steep slopes, slippery surfaces, small spaces in public transport (when there is any at all), few disabled taxis, inaccessible swimming pools, etc. That’s just the man-made bits. Getting into the countryside or seaside is a whole other issue. The world is a hostile environment for wheelchairs. So, whenever a wheelchair user gets out and about in town that is a victory, when a wheelchair user goes on a ramble in a special buggy that’s a triumph, if a wheelchair user goes on a beach in a special buggy that is brilliant. It means we are overcoming the obstacles and achieving what is very hard. Don’t underestimate the scale of doing things that seem ordinary when you are limited.

I have written this piece not to glorify myself, but as a recognition to all those out there going through the same. I am a member of many Facebook groups for disabled and limited people who look at life positively and with hope and vision. I write this for all of us. Recognizing that as much as we find it hard sometimes getting through the day and the night; we do it. We are strong, stronger than Hercules. We are brave, braver than we ever thought possible. We are courageous, our courage may be less obvious than some. But we need courage just to go out into a world that is hostile to our needs. Even a toilet can be a dangerous place for us, pavements, roads and shop entrances can be a great challenge. It’s time we realised that every day we get through, we are achieving something great and wonderful. Life is hard for us and getting through it is an achievement; well done. Congratulate yourself each day you get through; that is no small thing.

‘Are we there yet?’ Not yet, but we are getting there, so hang on in there, be brave, be courageous, be strong.

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