Advocation

Written by Kat

Do what the doctor tells you to.

The doctor knows what s/he is talking about.

Listen to the doctor.

People always tell you these things. Whether you have an ear infection and need antibiotics, or you have a broken bone and need a cast, or you broke your back and can’t move your legs. People always tell you that the doctor is the authority in the room, the doctor knows what s/he is talking about, the doctor is right.

What do you do when the doctor isn’t right?

What do you do when you think something is wrong, but you have no authority to stop it?


The day after surgery, Caleb was in a world of pain dimmed by the powerful haze of medication. (In a state like that, you are not the normal you. You are the confused, hazy you. You are not the you who is confident and present in everything going on in the world around. This can complicate things for the person who needs to advocate for you. You don’t always know what it is that you need, you can’t always articulate it clearly.)

I was the only person there to advocate for Caleb. The rest of his family members were two or more hours away. I chose to stay with Caleb rather than go home, because I couldn’t imagine not being there for him.

An occupational therapist came in to Caleb’s room that day. She did not seem to understand the amount of pain Caleb was in. She waltzed in the door, forcefully yanked Caleb on to the side of the bed in the name of “getting better” and waltzed back out in under five minutes.

When she tried to get Caleb to sit up on his own, he said no. Understandably. Caleb would need to learn to sit up on his own in a completely new way. Under the influence of medication, in immense pain from surgery, he was not ready.

She did not listen.

She got behind him on the bed.

She pushed his shoulders up, and she held him up in bed with her shoulder while he screamed at her to stop.

Can you even imagine the pain of that, after laying in bed with a broken back for two days, and with a new foot-long incision held together by staples right where her shoulder was?

I was torn between not knowing if I should encourage him to sit up, or throw the therapist out of the room. The thing is, though, I’m not technically Caleb’s family member, so I had no authority over his medical decisions.

The doctor knows best.

Except the doctor didn’t know best.

Caleb adamantly refused the next time someone came in and mentioned sitting up. That therapist put him through a very literal hell.

He was angry with me, too. I failed him that day. There had to have been something I could have done to stop it, but I didn’t know what to do.

It was two more days before Caleb agreed to attempt to sit on the edge of the bed. A different occupational therapist, Roxy, came in and spent twenty full minutes explaining to Caleb why he needed to get up, how it would benefit him, what would happen if he didn’t, how she was going to do it. Only after he fully understood what was going on and agreed, did she start working with him on sitting up.

The first therapist did more than just push Caleb too hard. She pushed him back. She set him back two days on his road to recovery because she had no concern with whether he felt comfortable doing what she was asking him to do. She only wanted to get in, get the job done, and get out. She thought that he was worth five minutes of her time, and no more.

I will forever be grateful to Roxy, the therapist who spent time with Caleb and convinced him to try, for getting him back on track. Only a couple of days later, he sat up for the first time in a spinal chair. It was a huge accomplishment considering where he had been just a few days earlier.

My advice to anyone who reads this is that if you have any suspicion that something a person is doing is wrong, regardless of whether he or she is a doctor or a person of authority, stop it. Question it. Stand up for yourself and the people that you love.

2 Comments Add yours

  1. gemmaorton says:

    I’m sorry to hear this awful experience you both went through. I have spent a lot of time in hospital over the years due to my disability. You are so true that you must stick with your gut and express your thoughts if you are unhappy with any form of treatment. I have been through this myself on a few occasions where professionals think they know best. And yes often they do. However they are not the ones in your position. And sometimes you know best. I’ve lived 32 years (my whole life) with my condition, sometimes I know best.

    Liked by 1 person

  2. Anonymous says:

    I am sorry you are going through this but you have learned a lesson far sooner than I did.
    You must advocate for your self and your loved ones – NO ONE ELSE WILL!
    Ask questions , become educated, act when something feels wrong it is a frightening position to be in but it’s the only safe way to get through life.
    Wishing you both good health!

    Like

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