World MS Day

Did you know that today is World MS Day? To me, this day is about sharing information and, hopefully, changing perceptions about the disease. If you have any questions about MS, drop me a line or write them in the comments section below. I may not know the answer but maybe another blog visitor will! If not, I'm happy to share my experience with you and try to point you to other resources to get more information.

A Potentially Offensive Brain Dump

What the hell. It's my blog and fear of offending people has never stopped me before. I'd like to think that my blog readers count on my brutal honesty. So here goes.

Sometimes I hate hearing about other people's MS symptoms. Sometimes I cringe when I learn that people I know with MS are struggling with walking, talking, and fatigue. Sometimes, I guiltily enjoy the fact that my MS is invisible.  I never lie about my MS. My blog is public and I use my real name so I'm not denying it to myself, to you, or to the world, but still...

The reality is that people have their preconceived notions about MS and people with the diagnosis. They hear MS and automatically think of canes, walkers, and wheelchairs. To paraphrase Seinfeld:  Not that there's anything wrong with that!

But there kind of is. It's like thinking that everyone who is gay speaks with a lisp or is a great decorator. Sometimes I think people are waiting for me to fall down, start slurring my words, or imagine that any day now I'm going to need an assistive device. Maybe they stay clear of me because they don't want to have to take care of me someday. I imagine that they think I'm just marking time until I get that purple polka dotted cane and go on disability.

I know, I know. What other people think of me is none of my business and I have not been gifted with mind-reading capabilities. But it bugs me.

Maybe I will end up with disabilities beyond my visual impairment but maybe I won't. After my diagnosis, I made huge changes in my life--reducing stress, changing my diet, meditating, writing, and more. I'd like to believe that those changes, combined with my positive attitude and the first-class medical treatment that I alternate taking advantage of and rebelling against, will prevent any progression and deterioration.

But maybe I'm full of shit. I have no control over most things, including my MS. Maybe it's not other people's prejudices that are pissing me off, but my own. Maybe I don't like to hear about MS symptoms because I'm still in denial (or vacationing there). Or maybe I'm just scared.

I'm Here, I'm Alive, I Still Have MS!

It's come to my attention that I haven't blogged in a while so I thought I'd check in briefly. Hi. My name is Julie and I still have MS. I'm still a single mom. I still work full time. I'm still editing my book. I'm still in recovery. I'm still meditating. I...

  

And, apparently, I've forgotten how to  "save draft" rather than "publish" since I inadvertently and prematurely published that incomplete post. So, let's continue... 

I still struggle with being a non-compliant patient. I still work hard (with varying degrees of success) to take care of myself. I am probably getting a solid C lately. If I'm going to the dentist, meditating daily, and getting enough sleep, chances are I'm eating too much sugar and/or not doing my recovery writing. If I'm being a rock star at work, I'm not getting enough sleep, or I'm completely abandoning my blog. The kids are probably the only area that I have any real consistency.

So I guess that means I'm still human.

More Tales from the Ride

There are things I like about The Ride. I like independently traveling to places that I can't reach via regular public transportation. OK. Apparently, there is just ONE thing I like about The Ride, but it's a pretty big thing.

I have a growing list of things that I do NOT like about The Ride. Here's a sampling:

• The drivers insist on buckling me in even though I can do it all by myself. Hell. Zane can do it all by himself and he's only 7.
• The drivers insist on walking me to the door, even though I qualify for The Ride because of a visual impairment and not a lack of motor function.
• I do not know exactly when the driver will arrive and risk being categorized as a "no show" if I am not ready and waiting whenever he shows up. And I do mean "he" (see below).
• All the drivers are men. What's up with that? Not all cabbies, train conductors, or bus drivers are men. Does The Ride hire women? If I was able to drive, I might even take that on as my personal mission the way I did at 15-years old when Consolidated Tobacco told me I couldn't be a picker  because girls could only work in the sheds. The boy pickers made 20 more cents per hour than the girl sewers so I made a stink. By the end of the summer, this girl picked. 
• I am sometimes forced to ride in close proximity with angry people. Perhaps they need their own blog to vent what they don't like about The Ride. Case in point: Mr. Jones, the elderly blind man who scared the beejeezus out of my children on Saturday during their first outing on The Ride. There was a mix-up with the number of people traveling in his party, and when the driver asked him to wait inside the restaurant until it was straightened out, Mr. Jones repeatedly banged his folded up cane against the glass on the door and implied that I was a racist when I asked him to stop. I guess I found another good thing about The Ride since the entire experience solidified by desire to stay positive. I may be visually impaired but I refuse to be a bitter blind lady.

Book 'em, Danno

So I booked my first trip on The Ride.  They were supposed to pick me up at my office after work tomorrow, take me to the mall, and then bring me home an hour later.  But we had a pretty big snowstorm in the Boston area last night and school is canceled for a second day tomorrow which, of course, means I'm not going into the office.

I have to say, I'm kind of bummed. I haven't been to the mall on my own for more than 2 years now. I would have been racing around for an hour to find a dress for Ruby to wear to a Bat Mizvah party on Saturday, which is not exactly fun shopping, but still!  She ended up borrowing a really pretty dress today so there is no pressing need for the mall trip.  But it's booked. And I want to go. 

Also, because I was getting picked up at work, I warned my boss about it since I didn't want him to get all pitying and ruin the way we joke about my visual impairment. He teased that he was charging the camcorder so he could videotape me climbing on board for the first time.  I'm pretty sure it was an idle threat but I think it would be kind of cool to have visual documentation for the blog.

With or without video, I was really hoping to have a funny story or two to share after the big adventure on my chauffeur-driven short bus. Do I call and cancel or just rearrange and go to the mall after their dad picks them up for dinner?

My New Ride

I opened a big envelope earlier today and read that the MBTA said "yes" to my application for The Ride. According to their large-print handbook that accompanied the certification letter, "The Ride is [the MBTA's] paratransit program, which provides door-to-door public transportation to eligible people...who cannot use public transportation, all or some of the time, because of a physical, cognitive or mental disability."

I have optic nerve damage and vision loss as the result of my MS. I don't walk with a red-tipped cane, have a seeing-eye dog, or read Braille but I do have low vision and I no longer drive. I take regular public transportation almost everywhere that it goes but it doesn't go everywhere that I want to go. And, depending on my destination, I sometimes have to take a trolley, a bus, and a train for an hour and a half to get somewhere that's only a 30-minute drive away. I get a lot of rides from my wonderful friends and neighbors, but it's nice to go places by myself and on my own schedule sometimes.

In spite of all these no-brainer reasons for The Ride, I waited about a year after I stopped driving to ask my neurologist to sign the application, and then I waited another year to mail it in. I had a whole lot of excuses but only one real reason. Pride. I didn't want to be someone who needed The Ride.

And, I have to say, I still don't. And it's still all about pride. What will the other riders will think of me? ("Why the heck is this able-bodied woman scamming a seat on The Ride?") What about the neighbors? ("Oh! Julie must be going down the tubes with her MS. Poor thing!"). What happens if I flirt with a handsome man in Ikea and he walks me outside and is about to ask for my number when my short bus pulls up?

I'm thinking that, for my inaugural trip, I should pick a place to go all by myself that I couldn't get to on the train. It should be something fun and not something absolutely necessary like a doctor's appointment. Maybe I'll go to Ikea (to troll for cute men who don't have anything against visually-impaired people) or to the DeCordova Museum.

Or maybe, I'll stare at the certification letter for another year. 

Fashion Plates 2010 Fashion Show

Partner as Caregiver?

I've been thinking about my last serious boyfriend lately. I think it's just because of the holidays approaching which make me think about people that are no longer with me. Because we broke up less than two weeks before my dad died, the grief of those two events is forever melded together in my mind. So, Christmas is coming, I'm missing my dad, and then I start missing him a little, too.

On bad days, I remember myself as the victim who was heartbroken after the relationship ended against my will.  Awwww. Poor me. Except that's not true. The truth is that I started being honest with myself about what I wanted in a relationship and when I shared that with my ex, we realized that we weren't in the same place and didn't want the same things. I wanted to move forward and he was happy with things they way they were. So, it ended. I'm pretty sure that if I had been content, things would still be going along the same way two years later without any further commitment. Except that that wasn't what I wanted. And, you know what? It's STILL not what I want. Although I miss being in love, I don't miss settling for less. I don't miss silencing my inner voice just to avoid being alone.

I was talking about all this with a friend this weekend and she asked me if I thought MS had anything to do with our break-up. Although the issue was never raised, it's hard to say whether or not MS was a factor. Because I have MS, it's impossible to know if things would have been different without the MS. I've never managed to find a crystal ball that shows me the parallel universe where my life is not exactly as it is in this world. When I met my ex, I didn't have MS. We had been dating exclusively for almost two years at the point that I was diagnosed and then we dated for another year and half before we broke up.  Who knows? Not me.

So, I told my friend honestly that I didn't know, but that it didn't really matter because I am who I am and part of who I am is someone with MS. Love me and accept the MS.. Her response was like a punch in the gut. She said, "Maybe he couldn't commit to being your partner because he worried about being your caregiver in the future."

I don't blame my friend for her brutal honesty. I had thought something similar myself but I never said or heard it outloud before. But there it is.

And because it's the time of year that I have to work extra hard at RSVPing "no" to every possible self-pity party, my mind started to race: "Oh my God! I'm going to be alone forever!;" "No one is going to want me;" etc, etc, etc.

SCRRRRRREEEEEEEECH. Thankfully, I put the breaks on that little trip to nowhere lickety, split. Here's the pep talk I gave myself to get back on track:

I don't need a caregiver today. I care for myself. Anyone that I'm with could be the one to end up needing a caregiver. My MS might bring that possibility to the forefront, but isn't that a possibility in any relationship?  Isn't that part of the risk of spending your life with someone and growing old together?  Most people don't age without issues. I have Multiple Sclerosis and Ulcerative Colitis, but I'm a pretty healthy 46-year old woman in every other respect. I don't drink, smoke, do drugs, I meditate, eat healthy, have loving relationships, and I stay relatively active.

Maybe I'm in denial but I don't think it makes sense to plan my life around potential disability. Am I crazy?  I mean, yes, I have MS, but I've had it for three years and I feel great. My vision issues are real and have taken away my ability to drive, but even if it gets worse, there are plenty of completely blind people who don't need caretakers.

So, the pep talk worked. I've back on my track of gratitude, trusting that, with a higher power that lives inside me, I will never truly be alone and that I will be ok, no matter what.