8 Things Nobody Told You About Being in a Wheelchair

Ed. Note: This is a guest post by Lorraine Wascher Woods.

As someone living with multiple sclerosis and a patient of Dr. James Bowen, I wanted to share what I’ve learned about living with a wheelchair.

1. Call ahead. Bring rain gear.

You may discover that a building is not wheelchair accessible when you’re three steps from the entrance. Since this is Seattle, it will probably be raining. Carry rain gear for you and your device. Rain and moisture wreak havoc with electronic panels and parts. Call ahead to confirm that the venue has a wheelchair-accessible entrance and bathroom. I’ve learned that lesson the hard way. 

2. Expect the unexpected.

You can plan all you want, but you never know when your wheelchair and its lift will fall off the back of the car. This will likely happen during rush hour downtown. I prepare for the unexpected by always having my mobile phone within reach. It even gets tucked into bed at night in case something happens like I fall on the floor. So, remember to keep your phone charged!

3. Get comfortable asking for help.

It’s best to accept this now. For instance, grocery stores stock many items out of arm’s reach. However, stores often have employees who will assist with your shopping. Ask the store manager about what services are offered. Help is typically more available than you think.

4. Cultivate patience.

Imagine riding a shared-ride vehicle when the dispatcher asks the driver to take a different route and pick up other passengers. As a result, you miss your appointment. Under the circumstances, you resign yourself to reschedule the appointment, albeit with gritted teeth. You are at the mercy of others.

When the best laid plans go awry, focus on what you can control in the situation. Can you participate in changing policy? Can you write letters about the infraction and document its details? Taking action will help allay feelings of frustration and discouragement, and may even make way for changes in the future.

5. Don’t be shy about calling 911.

MS is the unwanted and unpredictable disease I live with every day. Consequently, body movements and energy levels are compromised. Warm weather, in particular, weakens the body. If your legs aren’t behaving and you can’t get into the car, call 911 as a last resort. Remember that the definition of an emergency for a person in a wheelchair is different than an emergency for an able-bodied person.

6. Accept bad days.

It will seem as if everything’s closed off to you: stairs, broken lifts, narrow doorways and giant hills. You’re bound to feel frustrated and agitated, as if you’re a stranger in a strange land. These are normal feelings.

We must find ways to accept and cope. For me, writing allows feelings and frustrations to spill out on paper. Then I can begin to release the absurdities and inequities that ultimately complicate my life. If writing isn’t for you, try meditating, painting, yoga or any number of outlets. Remember that getting angry at people may feel good in the moment, but it won’t get you what you want.

7. Don’t sweat the small stuff.

Disability is stressful. Wheelchairs break. Health care costs constantly rise. Able-bodied drivers park in handicapped spaces. Once you have a wheelchair, things you used to think were a big deal, like a two-hour wait at a restaurant, no longer are. I have learned to prioritize what is worth getting upset about and leave the rest behind.

8. Practice self-compassion.

Give yourself the leeway and grace you would give your best friend or child. Accept the new person you have become. Acceptance for your new normal requires fortitude, self-compassion and time. Figure out how you need to take care of yourself. Be realistic about your limitations. No one else knows your physical restrictions or resources like you do.

I demonstrate self-compassion by building rest periods into my day, being mindful not to beat myself up over trivial matters, getting pedicures, carrying my mobile phone at all times, and expressing encouragement and pride rather than criticism for my actions.