As this tenacious disease continues to attack my body, I am forced to rely on others for so much of my day-to-day life. Accepting this was extremely difficult in the beginning but I have learned to not only accept it, but embrace it. I now find myself reliant on humans as well as technology throughout the day.
"Take care," is an overused statement typically said in passing or at the end of an email but it has become a way of life for me. I literally take care; it is how I still live what I consider a very full and happy lifestyle. I am so thankful to have come across some amazing caregivers and have such a strong support system from my friends and family.
However, human relationships can be difficult no matter the circumstances. The relationship between caregiver and patient (I hate that word) is a very delicate one given the amount of help someone with ALS can require. Let's just say I have gone through caregivers like Murphy Brown went through secretaries. There was the one who looked like Shrek, the one who looked like Tyler Perry (from any of his movies where he is in drag) and the young blonde who treated her hours like she was working retail.
It is important to remember that this person is not only cooking for me, they are feeding me. They are not only helping me get dressed, they are helping me shower. Imagine interviewing someone and two hours later having him or her scrubbing your chest with a long handle loofah like an animal at the zoo. Not to mention the awkwardness of scrubbing Mr. you-know-who!
Thankfully, I have two wonderful caregivers right now. They help me get the day started, and I know I am not always the easiest person to deal with, especially before I've had my morning coffee. But who is, right?
If a caregiver gets my day started, its technology that keeps my day moving. I currently use Dragon Dictate, a speech recognition software program that allows me to talk instead of typing. I still have use of my hands and am able to use a mouse and maneuver my way through about the work day. Our foundation currently has one full-time employee, who is paid part-time wages and that is, yours truly. I love my work, my team members, what we've accomplished, but more importantly what we're going to accomplish in the future.
I am at my desk all day with the exception of meals and therapy appointments. I can use my iPhone to adjust the temperature or raise the blinds, on another point for technology. If my hands fail and my voice follows, I do have some new piece of mind and his name is Tobii.
Tobii manufactures the hardware and software that enables people with ALS to operate a computer with their eyes. I know this sounds like something out of Star Trek, but I assure you it is not. It is all a little scary using it now as I don't necessarily need it -- but probably like a skydiver, it's good to have a backup chute just in case.
Without technology I would truly be lost right now. It allows me to operate on a level playing field to the rest of the world. It allows me to connect in every sense of the word. Because of this terrible disease I need help every day, and you know what? That's alright by me!