A Hospitable Hospital

     My life with multiple sclerosis brought me into contact with many different types of doctors, nurses, and therapists. All are different, and all are great at their calling. But none can compare to what I've experienced at The Shepherd Center's Andrew C. Carlos Multiple Sclerosis Institute. Which is downtown Atlanta, GA. It is a phenomenal place, which makes it so worth the drive to get there!

     I could gush on and on about how awesome of a place it is, but then I'd tire myself out. Allow me just to say the best part of going there:

Being there in a walker, wheelchair, or scooter is NOT uncomfortable.

Virtually Supported

Online Communities: Are they really that great?

    Since my diagnosis, I began looking into online communities, websites, YouTube videos,and chat rooms that focused on MS. Some that I found merely turned out to be more like cliques, while others that I've found really are genuinely supportive. They are well maintained and friendly to those new to this MesS.

1. We're Not Drunk, We Have MSTM 

     As most of the world is familiar with the titan that is Facebook, the idea of groups is nothing new. I found a closed group, asked to join, and was amazed at what I found. This is an amazing group of almost complete strangers. I feel comfortable sharing my worries and woes that elsewhere would only seem like complaining. The common bond is not only MS, but also a common knowledge of how this disease impacts lives. While each of us deal with different levels of symptoms, medications, problems, or joys, we all understand each other.

2. Rituxan For MS
     This group is also from Facebook. But it is geared toward a specific medication that is rather new to the world of MS. Here I find support and help with issues that surround this medicine and its six hour infusion.

3. My MS Team
     My MS Team is a unique site. It is basically a Facebook devoted to multiple sclerosis. It is full of good support, ideas, and information.

4. Google+
     Google+ is growing. I think of it as the more academic of two social networks that I visit. I am a member of a Multiple Sclerosis community on Google+ and it is far more academic than social. I do not mean that to demean one or the other, but rather I view as used certain libraries while in college. For a more 'fun' and loose research night that involved maybe going to a restaurant, or a street show, we'd go to Athens. If we wanted a more cerebral, academic night of research and maybe some coffee, we'd hit Clemson. It is like that for the differences between Google+ and Facebook. For some more relaxed and sociable fun and a little information, I head to FB. If want a more seriously focused time, I head to Google+.

Note: This is just a small look at what support I have found online. There are hundreds of groups, sites, and networks out there that I'm sure I would love. I am also sure that there are some people out there who do not like online support. That is also fine. I'm just here sharing my experiences with four different groups of people with MS. 

An Island, Not An Ivory Tower

     Donne once wrote that, " . . . No man is an island . . . " (XVII). 

     While I agree with the idea that we are all connected as a culture, a race, a planet, multiple sclerosis has made me into an island. Yet, I'm not an island in the way that he intended it. I do not consider myself above, superior, or better than anyone else. Likewise, despite my often self deprecating spells, I don't really feel superbly inferior to others. Here a few examples of my, "Islandisms."

• I might react improperly to things.
  MS can often mess up how I verbally and physically respond to things. It can be funny, embarrassing, or insulting. The worst case happened about three years ago. At a party with some new friends, one brought me a beer, and I flicked him off! I still think of that every time I see him.
• I might use the completely wrong word without realizing it.
  I don't mean saying the wrong color when asked if I prefer black over blue. I mean complete phrases that have no meaning. I will think I'm using the correct words, hear them in my head, and then wonder why no one understands me.
• Sometimes I use no words at all.
  I will carry on a conversation with someone and yet at times say nothing.
• I get tired doing almost nothing.
  Even to get out of bed requires a lot of effort. Going to the bathroom requires me to plan my steps from whichever place I'm sitting to the nearest, accessible toilet. I often find that this means I do not go some places.
• I often seem aloof.
  I'm actually just more aware of my potential for embarrassing either myself or someone else. My silence can come across as a snide or snotty superiority, but it's more of a cautionary measure. When I do not speak, it is to prevent using the wrong or improper word. I also refuse to join people at times because I will be too far from a restroom.

Like an island, these barriers are not impassable, but it's not done with ease. Things like: the ubiquitous, "Spoon Theory," and the growing number of instances I see of MS in popular television shows do help. As it was so eloquently said, "You just gotta keep livin: L I V I N..."(Dazed & Confused, 1993).

Keep/Quit Fighting/Trying

Any combination works with those words.

     Despite living with this MesS for ten years, I still get surprised by events, symptoms, good news, and bad news.

Memory or, "Now, where was I?"
     Now, we all have had lapses in memory. Everyone goes through moments in which you lose your keys, or forget where you parked, or misplaced, "That one thing." I have had those moments as well. Yet with MS, not only are they more frequent, but also they're more severe. I don't just misplace keys; I lose them in my pockets. I don't just forget names, but I forget faces. It's still disturbing to see someone that I know but don't remember that I know. However, I am good at waiting in a conversation long enough to catch the name I'm missing.

Reading between the lines has taken a whole new meaning.
     Since high school I loved reading. I used to be able to read chapters at night and read assigned texts for class. In college I discovered even more authors, ideas, and styles. I fondly remember enjoying reading. Now, however, I'm lucky if I get through a chapter in a week. It's mainly due to my memory, but also to my inability to process properly. I don't like reading anymore mainly because it's a constant reminder of what I've lost and a gloomy prediction of what I will lose. But, I still refuse to quit entirely. I've had to read other blogs and articles in preparing for this. It just takes me longer, and often it takes me more than one try to read AND understand something.

Walking: heh. . . Walking
     It all started with a cane. Then that cane evolved into a rollator. The rollator is soon looking to become a walker. I know  wheelchair is on the horizon, but I need to win the lottery first so I can afford one. My mobility scooter still does well, and on the plus side, walking uses my arms so much that it's basically an upper body workout just to go 15 feet.