Lean On Me
When I was diagnosed with MS I had a million emotions and thoughts running through my head. I admit, one of my biggest concerns was the possibility that I was going to need a cane or a wheelchair at some point. I will never forget being newly diagnosed and waiting for my first appointment with my MS specialist. I was the only one in the waiting room who was not in a wheelchair and it was terrifying. As an MS nurse I learned that this is a very common fear for MSers to have, and if the time comes that they do need an assistive device it is usually a sad time in their lives. Sometimes "Stephanie the MS nurse" and "Stephanie the girl with MS" have completely different feelings on a subject. Shots are necessary, but shots hurt and I just don't want to do it today! I can't feel my leg so I better get an MRI, but the thought of getting back in the tube makes me want to run! This is one of those topics because patients and providers view assistive devices in completely different ways. I thought the best way to explain this particular difference in opinion would be to tell you a story:
When I was a night shift ICU nurse I had the same patient for several weeks in a row. He was recovering from a big stroke and had successfully been weaned off of life support and was finally conscious and talking after a couple of very scary weeks. His family came to see him during the day but hospital rules prevented them from staying overnight, so he spent his nights alone. Everyone around him was overjoyed that he was awake and alert, but he was still trying to wrap his mind around what had happened. He woke up in the ICU unable to move his left arm and leg, and every evening after his family went home he spent the rest of the night quietly crying to himself. Now, I'm no Mother Teresa but I do know how to spot someone on the brink of losing their mind and I figured he could benefit from escaping those four walls and getting some fresh air.
One night the census was low and he was my only patient, so I grabbed a wheelchair out of the closet and scooped him up along with his monitor and all of his wires and tubes. Then the two of us snuck out in the middle of the night and went on a little field trip. We wheeled around the floor, to the lobby, and finally rolled out of the automatic sliding doors of the ER bay. We stood outside looking up at the stars. It was a beautiful crisp fall night totally devoid of florescent lights, blaring alarms, and the bustling hospital staff. We sat and breathed, and said nothing at all for a few minutes until I had to get him back to give him another dose of medication. We quietly wheeled back to the ICU and I got him settled back in bed. That night he didn't cry at all, and the next night he even slept soundly.
Healthcare providers look at canes and walkers and wheelchairs as a way for people to still be able to get around, to get out of bed, and to preserve their sanity by escaping those four walls. We prescribe assistive devices to assist our patients so that they may continue to be productive and active in their community. We see them as a great asset, and an important resource for our patients because we know that our patients still have a lot of life to live. As patients we see them as a crutch that we have to lean on, a symbol that we are not who we once were, as an embarrassment. Maybe there is a compromise between the two views.
How many specialists did you see before finding "The One"?