I started using a
walker about two years ago. I had gone to a National Ataxia Foundation conference in L.A. and had seen all these people booking around with them and thought, "I gotta get one of these" and mentioned it in passing to my friend Kate. Then, because she's a gift from God, two weeks later one showed up at my house. The top-of-the-line model, too. I never see it. Whenever I see people with a crappy one with no compartment for 12-packs, I feel really good -- the tiniest bit superior, I can't lie. I also always say "We should race." Thankfully they never do.
Anyway, in the interest of saving time, or if I'm exhausted, sometimes I'll sit in it and one of my friends will push me. There have been four instances where we hit uneven pavement and went down. I've never been hurt, but the driver is always mortified and I think it's actually worse for them. I've been in their shoes. I have this story about dumping my wheelchair-bound sister Dee Dee which I'll get to in about 10,000 words. This got pretty long. I broke it up into parts but I apologize in advance for any eyeball cramps. The awful moment of dumping is part of a real clusterfuck of a trip to Fenway Park that happened 10 months before Dee Dee died and must be told.
My earliest real memory of Dee Dee, one I can put into words, happened somewhere around when I was four or five. My parents had gone out and put her in charge of me and my brother. She was either 11 or 12. It was dusk and the three of us were at the kitchen table, probably eating, when there was a loud rapping at one of the windows in the back hall. It cut the air and startled all of us. When we went over to see who it was, there was nobody there. At that same instant, louder rapping came from a window on the other side of the house. Then there was banging on what sounded like every window -- loud, violent banging. In the space of about five seconds, the thoughts in our heads had gone from "Kevin Flannery is here!" to "A Satan-worshiping cult is about to break in and kill us all" -- Satanic cults were a major fear in the '70s -- and we were fucking terrified. Dee Dee went to the drawer in the kitchen and pulled out the big knife -- a chef's knife -- and the three of us climbed up on the dinner table and got behind her. She sat cross-legged, holding the knife out in front of her as we all waited for the door in the back hall to open. I feel like the F word was used. She was as scared as we were but I knew anyone coming through that door was getting stabbed. We were gonna die but at least there'd be stabbing first. I remember registering this emotion of defiance when faced with futility that I had seen in my mother. The banging stopped and no one in black hooded robes came in. Eventually, we decided it was our neighbors Cosi Favaloro and Kevin Flannery trying to scare us but I don't remember anyone owning up to it and it definitely seemed like the work of more than two people.
Years and years later, in 2008, Dee Dee was visiting Massachusetts, from her home in Florida. She and her three kids -- Evelyn (16), Eamon (15) and Kevin (11) -- had a room at the Best Western in Fresh Pond, Cambridge. I hadn't seen her since 2005 when I went overseas and, because I'd been on a mission of self-destruction in Thailand for three years, I hadn't been in contact with anyone in my family. I'd only been air-lifted out of Bangkok about a week earlier. In Thailand, I had found out that months before I had finally called my father and gotten an update on my sister, she had separated from her husband and was living in a nursing home, at like age 42. That's young to be spending the rest of your life in a nursing home. I had visions of pee-stench hallways and Alzheimer's-ravaged old people jabbering while they shit themselves. Yikes. The fact that I had missed these major events in her life freaked me out but when I finally got her on the phone and couldn't understand a word she said -- not one word -- I was
really freaked out. I felt like a shitty brother. I hadn't spoken to her in a year and we had a two-minute conversation that was basically me saying, "What?" fifty times and Dee Dee finally giving up, getting off the phone.
Clearly, she had degenerated a ton since I'd left, but this inability to talk to her on the phone was unbearable. SCA1 doesn't affect the brain so much but it completely takes away your ability to communicate, which I think makes you go crazy. My mother, at least, seemed pretty pissed off about it, as well as shut down, at the end. She was totally alone. Maybe it was the administration of anti-anxiety meds my mother didn't have the benefit of that kept Dee Dee completely socially vital right up til the end. But over the phone, without contextual cues or eye contact, I couldn't understand her at all. Talking on the phone had gotten harder and harder over the years but this was a new level. I couldn't even tell if she had said, "Don't worry about it. I'll talk to you later" and hung up or "Go to hell" and hung up. I just knew it was one of the two.
So this is where I was at when my brother and I knocked on their hotel room door a few months later. I was immediately relieved when Kevin opened it and we were greeted with huge smiles and hugs. I was also shocked by how much worse she was (non-stop head motion, herky-jerky arms) but more jarring was that Dee Dee had shaven her head and looked totally freaky. Apparently she had done it to show solidarity with a female friend at the nursing home made bald by chemo but she also said it was to show support for the troops. Whatever. The thing is, when a woman shaves her head she can look beautiful, but she can also look like a nutjob. It's the same with dudes. Hell, not even Britney could pull it off. I love my sister but she definitely fell into the nutjob category. Still, it was the same Dee Dee. Sure, she was sick as hell and looked pretty weird but she was still funny, the nursing home wasn't so bad and her description of negotiating the airport was a riot. I also bonded with my niece Evelyn over cigarettes in the foyer of the hotel. I guess it makes me a bad uncle but I was actually excited to learn my teenage niece smoked. The way I saw it, cigarettes'd be an opportunity to hang out. Plus, I don't care what anybody says -- Newports taste good. I was told they had six tickets to a Red Sox game and that they were gonna go on a tour of Fenway and did I want to go? I said yes knowing full well that as the ablest-bodied adult, I was the point man, kind of. I also knew that there'd be utter pandemonium, but it'd be fun.
PART II
On the day of the game, my niece Alison and I got ourselves to Yawkey Way and waited for Dee Dee and her kids. Riding the Red Line to Kenmore Square, I said to Alison, "You know this is gonna be a major clusterfuck, right?" Alison was like, "Oh come on, Uncle Mike. It'll be fine." I said, "You have no idea." If there's one thing I know, it's that the chaotic family outing is among the oldest and most reliable of McGuirk traditions, highlighted by my drunk a-hole father yelling "I WAS SHOOTIN' GOOKS!" in a Chinese restaurant to remind us of his military service (spent during the Korean War and ENTIRELY in France, drunk); a mechanic in Lake Winnipesaukee telling us that if we smelled gas while in the car, get out because it's going to explode; and being asked to leave a hotel because, the night before, a member of our party had punched the desk clerk for telling him the pool was closed. Good stuff. You get the idea. Where two or more McGuirks are gathered, chaos is just a matter of time.
It was 4 PM, first pitch was 7:05. All I knew was that we had tickets and were taking a tour of the park. There were signs offering them all over the place. There were also hundreds of people clogging the closed-off street in front of Fenway. Dee Dee arrived in a car and got dropped off on Brookline Ave. This can't be true but as I remember it, the car didn't pull over. Instead, in the glut of traffic, the car stopped and I ran over, opened the trunk and got her into the wheelchair and across the street as quick as I could, waving and saying, "Sorry sorry sorry" to both lanes of traffic. She had a 7-Eleven Big Gulp of soda. We were running a little late and the drop-off had been stressful but we were all excited. And I was psyched to see Dee Dee, to be with all the kids and to be doing this whole thing. I sent Eamon to go figure out where the tour was. He came back with the info that they all ended at 4, all the signs were for tours that had already left.
I had been holding Dee Dee's wheelchair, and when Eamon told us there were no tours, I decided to investigate for myself. I was the grown-up after all. I started towards the nearest kiosk. Out of the corner of my eye, I noticed Dee Dee rolling. But she was going slow -- she had removed the footrests on the chair, and often propelled herself with her feet, pulling herself forward, rather than the common method where people put their hands directly on the wheels -- I decided she was walking. Our mother had done the same thing. She was definitely walking, in her way. Right? That's not rolling, right? Then horror of horrors, she was definitely moving too fast. And I could now see that what had seemed like flat asphalt was not flat at all, there was a slant that went to the curb, and Dee Dee was speeding towards it, totally out of control. I've told this story a hundred times but, writing this, I have the same sick feeling in my stomach I had when I did the math of where she was and where the curb was and what was about to happen to her. I dove. She hit the curb and came flying out of her chair, the Big Gulp soaring. There were ice cubes in the air. I somehow caught her before she hit the ground. At least 50 people saw the whole thing, and just stood there, rightfully judging me. Dee Dee said,"You aahhsshole" but she wasn't as pissed as she could have been, really. She was kind of already laughing half-way through "aahhsshole." It was an incredulous I-cannot-believe-you-just-did-that laugh but a laugh all the same. Then she said, "I want a beer. Right now." The whole chain of events unraveled in the space of approximately five seconds.
PART III
They weren't serving alcohol outside the park so I corralled the recently traumatized kids who'd just watched their mother practically face-plant thanks to my idiocy and we headed to the nearest bar, a massive, soulless money-factory attached to the park called Game On, where our brother Joe was a bartender. As we made our way there, I couldn't stop thinking about what had just happened. I remember thinking, "Well, I know what I'll be seeing in my brain every night for as long as I live. It's gonna be fun trying to sleep with that shit bouncing around." Game On was insanely crowded. The wheelchair got us past the line outside and to a table in the downstairs lounge fairly quickly but it wasn't long before the blaring Hard Rock Cafe soundtrack chased us out. I was trying to get my niece's drink order for the fifth time over "Love Removal Machine" by The Cult when I gave up and made a "Let's get out of here?" signal to my sister and she nodded.
Plan B was anywhere off the beaten path. We ended up at a Sizzler-type of place about a half-mile from the park. It was 5 PM or so. The game was in two hours. Plenty of time. We could have dinner even. So we sat on the patio looking at menus. I got a Heineken and Dee Dee got a Margarita. Uh,
blue flavor, whatever that is. We asked for it to come in a pint glass and with a straw. The waitress was really nice, we started to relax and have fun. I lit up a cigarette. When we ordered, I got the steak. Kevin ordered chocolate cake. The waitress was like, "Really. Chocolate cake." Dee Dee shrugged and the waitress walked away laughing. We were all laughing. I asked where the tickets were and Dee Dee said, "I don't know. Will Call, I guess." Then she told me to call her friend Donna (who'd bought the tickets) and find out what name they were under.
When Donna answered the phone, she was screaming. "I've been trying to reach you guys since one o'clock! You were supposed to be there at 1:30!" It was then that I realized that this wasn't just tickets to the game. Donna had put together a Make-A-Wish Foundation type of thing. Kind of a big detail to not tell me about. The tour wasn't A tour, it was OUR tour. "They were gonna take you on the field! You were gonna meet the team!" She said, "If you guys aren't at Gate D in 10 minutes, they won't even let you in!" I stood and made the round up motion with my fingers, "We gotta go. RIGHT NOW" The waitress saw the scrambling and came over, I said, "We need to cancel the order and get going, sorry." She said, "No problem" and turned but I know for a fact that she saw Dee Dee putting the Margarita in her lap and covering it with a napkin. Surreptitiousness isn't exactly a thing with ataxia. At the same time, my 19-year old niece Alison was standing and pounding my beer. I didn't blame her. Another bad uncle bonding moment.
I told Eamon to run ahead to Gate D and tell them we're coming as fast as we can and told the others to get moving while I paid the check. When I caught up to them, Kevin was pushing his mother's wheelchair at a full run.
Despite some short cuts that didn't pan out, we made it to Gate D in time, where Eamon was waiting for us with park personnel. They were really nice anyway, and even got us on the field for a couple minutes before ushering us to our seats out in mid-right field, in the last row of grandstand level seats behind Pesky's Pole and pointed directly at the Green Monster. These are bad seats for BLIND people so we were a little shocked. Usually, handicapped seats are choice. It didn't matter, though, we could see home plate by turning a bit. And we'd made it. Talk about relief. I'd dumped my sister and we'd almost not gotten in but we were there, and, boy, were there ever some stories.
I didn't watch much of the game. I gladly got Dee Dee Mike's Hard Lemonades whenever she asked for one. Between the fans booing Keith Foulke in 2005 and management letting Pedro walk that same year, I had begun to hate the Red Sox and their fans. Then when they booed Manny at this game (possibly his last as a Red Sox), I decided I would never go to Fenway again. Do any Red Sox fans remember what they did for us in '04? I know it's asinine to care about sports but it's true, and I can't explain it, but my life is actually
better now because they beat the Yankees in the '04 ALCS. If Keith Foulke doesn't pitch a thousand innings in that series, we are STILL Jeter's bitches. The dude's career ended because he was tapped after doing it. If you ask me, every single one of those dudes gets a free pass for life, infinitely. So, fuck those people who booed Foulke and Manny. Really, fuck them.
There are two more details about this story that need to be related. One is that, after the game, after the park had emptied, I pushed Dee Dee to the elevator and we waited in the saddest, most grotesque line that ever existed. Twenty or thirty (no lie) cripples in varying states of gimpiness were silently pushed onto the elevator three at a time. Nobody said a word, and it took a half hour for us to reach ground level.
The last thing is that on the way to the pick-up rendezvous, we were passing a guy selling souvenirs on the sidewalk and Dee Dee decided she wanted to browse. She pointed to a T-shirt, a cup and a pennant, talking to the guy the whole time, in her trumpeting ataxia warble. He did his best to understand and we all translated but I could see he was freaked out. Between the shaven head, crazy arms and totally non-handicapped-person fearlessness Dee Dee had when she talked to people -- healthy people have a threshold they reach when dealing with a handicapped person. It's natural but it's definitely there. I could see the guy thinking, "Does she have MS, cerebral palsy or cancer, or all three?" Then when Dee Dee went to pay him, fumbling with her purse, he was like,"You know what? It's cool. Here, just take the stuff." Dee Dee said, "Really? Okay.Thanks!" and we pushed off. I said, "That's awesome. That dude was so freaked out, he gave us free shit to get rid of us!" Dee Dee goes, "Oh, shut up, Michael. He was just being nice."
