Not Just a Girl in a Wheelchair

Chapter 5

Dr. MacDonald pulls up a chair, "So, your Mom and Dad explained to you what AFM is?""Yes, they did," I say.

"Okay good. Do you have any questions about it? The disease itself? Before we move on?" he asks. He looks over to my parents as well. They shake their heads no.

"What causes it?" I wonder.

"We are not entirely sure, sometimes it is seen in kids after a virus. Your Mom and Dad said you have been healthy and have had no cold or flu-like symptoms before this started. Is that right?" He asks.

"I had some queasiness the morning this started and felt off-balance and weak, but before that no," I answered.

"I suspect that was the start of this and as you all can tell, it hits rather fast. In hours you can go from being rather healthy to being in serious condition. Which is what happened with you. Also, in many cases such as yours, we don't really know a cause. I say in many cases, but honestly this a rather new and rare disease. It's only been a few years since it was first described and we honestly don't know enough about it to know the long-term outcome." He explains.

"Will I walk again? Will I regain more movement in my arms?" I wonder out loud.

"Since you have regained some function in your arms and you are breathing unaided, it's in our experience so far that you may slowly regain more function there." I smile.

"However, I don't want to give you false hope either. It's also in our experience so far that cases as bad as you, that require life support, can be very slow to recover. It's in my opinion that you may not regain full use of your legs. I sincerely hope that's not the case and there is no way to know for sure. Sometimes, the patients themselves play a big part in how they recover, depending on how well they adapt and adjust and how much work they are willing to put into physiotherapy and occupational therapy. You will need both."

"We mentioned to her she would be moving to the rehab floor at some point soon." Mom mentions.

"That's good. Yes, that's right, you will be moving maybe even as soon as tomorrow. We normally move you out of ICU first to a regular bed, but you are doing so well. It depends on your night tonight and how you feel tomorrow. You may spend a day or two in a regular ward" He looks at me, "Any questions?"

"How long will I be on the rehab floor once I get there?" I ask.

"That just depends as well. As long as it takes for you to be able to get the hang of using a wheelchair, transferring safely, getting back up if you fall, things like that. Your parents and I have talked and they will be ordering you a wheelchair within the next few days. Someone will come and measure you for it when you get to the rehab floor. It will be custom-tailored to you." He explains further.

"So, I will be in it long term?" I ask again.

"Let's just take one step, one day, at a time. For now, you will need it, yes, even if you get movement back you will be unable to fully support yourself for a while and if you are able to walk eventually you will still tire easily so it'll be useful. Your Mom, Dad and I discussed it with your physical therapist and feel it's in your best interest to get you up and into a wheelchair so that you have a little freedom to get back to school, get out and do things and not be confined to a bed. I realize this is scary, but again let's just take it one day at a time, okay?" He smiles and takes my hand. "You'll do fine. I told your parents that I can see you're a fighter and I meant it. You have a great attitude and will do well either way. I am sure of it."

His confidence in me seems genuine and shakes me a little. I'm only 15 after all. Going back to school seems scary. Physio seems scary, but I'm not one to give up. "Okay," I say, "I will work really hard, and I will walk one day. You'll see".