Being Independent with RA and Using a Wheelchair
The key in the door wakes me and I listen as my attendant putters around in the kitchen, pouring juice and getting a plate, letting me wake up slowly. She pushes my wheelchair into my bedroom, laughing as Lucy the cat refuses to get off the seat to allow room for me, meowing her protest as she is removed at last. I shower, my attendant washes my hair and later helps me dress. Toast and tea put on the table, she leaves and three hours later, another attendant comes to help me go to the bathroom.
I lived at home with my parents until I was in my early 30s. I've used a power wheelchair since I was 16 years old and need help doing most of what they call activities of daily living (ADLs). Showering, transferring from bed to wheelchair, from wheelchair to toilet and back again, getting dressed and undressed, making dinner, putting away groceries, housecleaning and so on. It means that in order to live in my own apartment, I needed to get into one of the few supportive living services in Toronto. Supportive living services provide services to tenants with disabilities living in a "normal" building. Totally integrated in regular housing, such services allow people with disabilities to live independently and participate in the community like any other person. Not surprisingly, once you're in, most people don't leave until they absolutely have to, which means there's a waiting list as long as Santa's good kids' list.
My parents and my sister helped me when I lived at home. They never made me feel like a burden, but we all worked very hard to compromise and accommodate each other. Still, when you receive care from people who do it because they love you, you cannot help but be aware of the gift, of the dependence and of the necessity to not be too much of a bother. It's automatic, part of the experience, an inescapable reality that there is constant gratitude and no matter how well your relationship works, it cannot help but affect the dynamics in subtle ways. If your parents are helping you, not sliding back into parent-child dynamics can be next to impossible, if a friend lends assistance, the friendship shifts slightly, affected by the giving and receiving of favors. And regardless of vows, if it is your partner or your spouse on whom you rely, what should be the interdependence of equals can too easily become lopsided dependence and therein lies the disintegration of love.
It wasn't until a week into living on my own that I realized I felt lighter and longer still before I knew why. And then it hit me. It was the freedom of receiving care from people who were being paid to do so. They were not helping me because they loved me, they were not helping me as a favor or out of the goodness of their hearts, they were helping me because it was their job. And the reason I felt lighter was because the constant awareness of being the recipient of generosity was no longer there.
Of course I use the words please and thank you when I interact with my attendants, because I've been raised to be polite, but when they are here in my apartment, they are at work and when I ask them to assist me to the bathroom or to make a salad, it is the nature of the contract between me and the agency that employs them and oh, the freedom... There is an immeasurable independence when the relationship between you and the person who provides your care is a professional one. Your thank you is for services rendered and has no layers of dependence and gratitude, no imagined sighs when what you ask is inconvenient, no niggling feelings of inequality. Yes, there is dependence, but if the attendant exploits this, you can complain to their manager.
The reality of living with rheumatoid arthritis means that most of us will need help with something, be housework, yard work, a ride to a doctor's appointment or washing your hair. Whether you need a lot of help or just a little, finding someone to assist because it is their job can be a soul saver, but finding agencies that provide these services for free or on a sliding scale can be a challenge. Ask your family doctor or rheumatologist for a referral to a social worker who will be able to put you in touch with community agencies. Call your city or county government, your alderman or senator and ask for help in finding resources. If community service is part of your local high school's curriculum, getting a high school student to assist you will mean that you are helping them, as well.
Independence. It's a big word that can be found in a small act. Even if the ones you love provide most of the help you receive, finding someone to do just a couple of hours of assistance a week can do wonders for your relationships and your soul. It is a contribution to your dignity and to that ephemeral sense of personal liberty.
You can read more of Lene's writing on The Seated View.