Living a Normal Life
All anyone wants, all I have ever wanted, is to live a normal life. It’s sometimes hard, but I am doing it. However, I’ve realized that my normal may be different. That everyone’s ‘normal life’ is unique and also very much the same.
A normal life with rheumatoid arthritis takes effort
In my case, I know that normal takes a lot of extra effort. With the pain and limitations created by my rheumatoid arthritis, just getting up and ready for the day takes more time and energy than most folks. Then to commute to work means motoring in my wheelchair, taking a bus (waiting for the ramp to deploy and the seat to be folded up so I can park my wheelchair), then riding the elevator down to the train, and so forth.
Because reaching my normal means a lot more additional effort and time, I have to strip things down to the priority. Work, home with my husband Richard, lots of rest, targeted time with friends, and travel a few times a year. Committing to extra activities outside of these means I really have to think about it: how am I feeling? Do I have the time? What will I give up to make the time? Do I have the energy? How will I pay for expending extra energy?
Normalcy means hard choices
For me, normal means making choices. Even making hard choices. When I expend energy I don’t have, that means my body will pay in extra fatigue, pain, aches, and possibly some other aspect of my life will suffer. Thankfully, this is not what normal is for most folks. But it is the reality of my life with RA.
My normal is different from other people's
Around the world, normal looks different in different cultures and places. But there’s a lot of similarity: the importance of work to contribute back, of family and friends to connect with, of activities that bring us pleasure and joy. How we do these things may vary, but the essence is much the same.
I think a stranger looking at my life would maybe say it’s not normal. They may observe I spend a lot of time with doctors, or doing health maintenance, or resting. They may see RA take up a lot of time and energy. They are not wrong. This is a truth of my life. But it is also a part of my normal.
Striving for normalcy despite chronic illness
If they look deeper, the stranger would also see fulfilling work, time with loved ones, activities that make me happy (like reading, art, theater, and travel). Maybe the mix is different. Maybe the ratio varies sometimes and leans toward illness at times. But a normal life is there, and I’m constantly striving to live it.
It’s easy to see my wheelchair and imagine that normalcy is not what I experience. That I’m constantly an outsider to life—looking in from the window. If you don’t know someone with health struggles, you may not realize that they are just living, as you are trying to do. Perhaps they have to work harder to do it, but it is still possible to live well.
An image of normalcy we want to achieve
I’m not sure normal is the right word, the best word. What even is ‘normal’ and does any single person have it? What is normal for me will assuredly be different than what it is for you. But if we can accept that everyone has an image of normalcy in their mind that they are striving to achieve, then perhaps we can live with the relative nature of their term no matter how differently each person may express it.
Over time my normal has definitely changed along with the condition of my body and health due to RA. My normal aspirations have shifted, but my fight to keep on living as best I can continues.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?