Well done Jennifer. I find a key point in your article that is familiar to me. The fact that having a reasonable day to day life is a good deal of work for many people. Although I suspect my disability is very different from your own, I find that same lack of understanding that just sustaining yourself is a demanding "job" in itself. Similarly, I feel the same embarrassment when people ask you "what you do".

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That is written in a really interesting way. I liked how you expressed yourself so beautifully, enabling you to explain something really difficult. When people ask what you do, now you can say 'I write for DiVine'. My friend Hayley has a blog you may be able to relate to - www.rellacafa.com

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I love the Alice in wonderland analogy. Yes its really deflating to have to say, "I am not working," all the time. It can take a huge effort every day just to live independently, when you have a disability. Doing things like shopping for groceries, can be simple when you are able bodied, but if you have a disability its like competing in a decathlon.

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I can really relate to your article Jennifer. Most days I feel I've achieved nothing. I lay in bed at night and think of what I've done or a friend will ask what did you do today? Got dressed, showered, made something to eat, read emails...it seems so banal, so useless. I have friends in the aired forces, the army, animal welfare, and I feel my life is so wasted in comparison. I long to make a difference but most days it takes my energy to do the little things. Going out as you say involves more energy. Your last paragraph really relates to how I've felt lately. Thanks, it's good to know there are others, makes you feel less 'lazy'.

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I think this is the favourite article of all I've written for DiVine. I'm touched. Thank you all for your nice words. For letting me know you relate to how I feel, and that I'm not alone in my problems. Carly: thank you for your compliment on my writing. Gary: I think you're right - the able-bodied don't understand that just living is so hard for so many of us. Peter: that Alice scene just expressed it so perfectly to me. Joanne: You're not alone. It can help to try to notice the little incidents you do automatically. Maybe you make a point of being nice to cashiers and other service workers - lord knows enough people don't that if you do, it has to make their day brighter. Maybe in your emailing, you're providing wisdom to nieces or nephews or other family members. Things you have time to think about, that they, in their physically busy lives, don't. Focus on what you do achieve, on the days you feel useless. But also remember that for those who love you, you've given them one more day of your time. One more day with you. For them, that's enough.

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I LOVE how you've written this Jennifer. Thanks so much for writing it. Creating understanding between "abled bodies" and people living with disabilities is an area where there is much room for improvement. Being judged by non-disabled people when you have a disability - particularly when it isn't highly visible - makes a tough situation that much tougher. Prior to ending up in a wheelchair I had the same issue: the ugly looks when using priority seating, others not understanding the varying energy levels and how taxing the physical pain is etc. At the same time, everything you have had to go through has made you who you are today. And that person just made my day. Keep running as fast as you can.

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Pauline: I totally agree. Through much effort and physiotherapy, I've reached the point where I can make planned trips out without a walker; but only if we can park close to the shopping centre entrance. I know you know the looks we get. Thank you for the 'just made my day' comment. :) I've got a couple more article ideas in my head, keep an eye out for them!

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Thanks for this article! I agree with your point to Joanne that it helps to notice little things in a day - and that living through another day is enough. I definitely learned to be happy with myself for something like "Today I got myself a glass of water". Congratulations for sticking with all the painful work of physical therapy. Now that's a hard job.

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You have always had an unusual talent for expressing yourself so the "average" person can understand. I understand and relate to what you say, and so would my best friend Phyllis (you may have met her), who has had rheumatoid arthritis since she was pregnant with her 30-year-old son. I'm really glad I re-discovered this website, trying to check your address.

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It sounds as if, on top of your being tired and in pain, society's assumptions and pressures are an added difficulty for you, i.e. if with your life how it is, your pace happened to be "the norm", or if everyone's individual pace were understood and accepted, things would in some ways be a lot easier for you?

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Strange how you get ugly looks for using a mobility scooter: It never would have occurred to me that anyone would think someone's using a scooter because they are too lazy to walk! And what is a handicapped person supposed to look like? Perhaps they are used to seeing scooters used by people with cerebral palsy (and of course, who obviously have the appearance of CP)!

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