The Dreaded "D" Word

Nothing can prepare you for this moment. As far as you know, it is just another day at another doctor's office.

You are sitting in a room. The walls are peach-brown and thin enough that you can hear a mother and a child talking in the room adjacent. There is a poster on the wall advertising Botox injections to help manage epilepsy. There is another poster on a different wall explaining the differences between various epileptic medications. In one corner of the room, there is a laptop on a little fixed table with a cabinet underneath. On the opposite wall is a brown exam table. The paper on the exam table is crumpled in one area. Next to the exam table is another computer on a rolling desk that is hooked up to a machine you are pretty sure is used to torture people. You say out loud that you hope you never need to have done whatever it is that machine does. (In the coming weeks you will find out what this torture machine is actually used for and that it doesn't hurt you in the slightest.) There are two metal chairs against the wall that remind you of the chairs you sat on in youth group when you were a teenager. They are uncomfortable. The room is warm and you are thankful for it because usually these rooms are cold.

The nurse comes in. She is wearing pink scrubs. Her hair is short and curly. She is cheerful. She smiles. She is kind. You can tell she is stressed. She takes your blood pressure. The velcro on the electronic blood pressure gauge is slowly coming undone while the gadget constricts around your wrist. You think it might fall to the floor. The reading is incorrect. The nurse takes out the old blood pressure arm cuff from the cabinet. She puts her cold stethoscope against your arm. She tells you the numbers and asks if they are normal for you. They are. She begins to verify information from the patient form you filled out. You answer all her questions automatically. You've been asked these questions so many times it feels scripted.

"And are you employed?" She asks.

No. You are not. You start to think about how you've never been asked this question before when the nurse interrupts your thoughts.

"Are you in between jobs or do you consider yourself disabled?"

She says it so casually. You blink at her. Your mind races for a moment. You smile. You definitively answer that you just aren't currently employed. You have no good reason for it, you think. That's just the way it is right now.

She types the information into the computer, tells you the doctor will see you soon and leaves the room.

You look at your husband. He is looking at you. You see in his eyes a look you know. The look he gives you when you are being naive. You see on his face what you felt in your heart. You've been looking at your life optimistically, as if you are simply between jobs. Sure you haven't been feeling well but you aren't completely immobile. You can put your clothes on by yourself. You are still able to do so much. It's bad but it isn't that bad.

But the more you think the more you realize; these past few years you haven't looked for a job because you know how often you would have to call in sick. You know how often you lay on the couch with limited mobility. You don't drive anymore. You think of the day your husband had to carry you because your legs weren't functioning correctly and the other times he has had to support you while you walk. You think of all of the times you have been exhausted from walking the short distance across your house. You think about the reasons why you are sitting in this doctor's office. You look down at your note card of symptoms that you keep and carry because the list keeps growing longer and you can't always remember everything.

The past four years of your life go whizzing by in your mind like a stop-motion video.

And you suddenly see clearly. You suddenly understand why you spend so much time wondering if you should have a cane, just in case; why you often wonder if you will end up, someday, in a wheelchair. You thought you were just being dramatic with these thoughts. But you see now that you've been slowly heading toward this question for the past four years. You can tell by the look on your husbands face that he already knew. And now you know.

You are, in fact, disabled.

***

Disability is defined as: a physical or mental condition that limits a person's movements, senses, or activities.

I think most often we think of disability as something we can see. We think of extremes. People we can look at with our eyes and see some sort of difference in. Some visible cue to a person's limitations. But invisible illnesses, even though you can't see them, can be debilitating.

You cannot look at me and see the pain I feel in my legs and neck. You cannot see my dizziness. My nausea. You cannot see how hard I am concentrating sometimes just to make it look like I am walking normally. You cannot see how blurry my vision is. Nor that the nerves in my body feel like they are being poked with hot needles. The list goes on and on. And I'm not even an extreme case. 

Until the moment mentioned above, I was in complete denial about being disabled. I couldn't look at that reality. There is still so much I am able to do and I try to focus there and appreciate it all. There's no question that I know I have limitations. I just didn't (and still don't) define myself by them. I didn't think about what it meant. I may not qualify for disability benefits and I hope I never feel like I need to apply for them. I hope this is a temporary situation and not life-long. That it doesn't get any worse. But I know the reality is, it could go either way.

That's part of what makes an undiagnosed illness so scary. The uncertainty. Not knowing what to expect. You can only see where you've been. Where you are now. And sometimes you are jolted by a reality you didn't see.

But sometimes, the things we can't change, end up changing us instead.