Thursday, December 09, 2010

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. 

Monday, December 06, 2010

Sunday, December 05, 2010

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.