| Mikey's Recovery Update Archive 3
Back to archive page | to Archive 2 May 21, 2000 through September 24, 2000
12/28/00 - Mick and I stopped in to see Mikey today and found him still in bed but contentedly watching the end of a classic Three Stooges movie on his new compact TV/VCR. What a difference! I think, not only will he be able to enjoy watching movies again but it'll probably be good exercise for his eye tracking muscles and maybe help improve his vision. He was delighted to see Mick who amused Mikey by reading "rock jokes" from a book I gave him, but since the jokes were just so awful he had to stop. But Mikey got a kick out of them anyway. We then helped him pick out his next movie selection. When it got down to the choice between Ed Wood's "Bride of the Monster" or "PeeWee's Big Adventure" he distinctly mouthed "PeeWee."
We exited for a little while so they could get Mikey up and dressed and intended to take him to the 8th floor to hang out for a while on our return but Kathryn, new ATEK person, showed up with other ideas so it was off to the second floor computer lab to work on switches. After leaving it alone for a while Spaulding is stepping up the efforts to find a switch set-up that Mikey might be able to work, while circumventing the spastic movements which happen with his thumb whenever he tries to concentrate and use it consistently. Mikey worked hard switching a tape deck on and off. He'd go through phases of accuracy but then not be able to stop. Then he'd get frustrated as involuntary movements and ticks would take over. Still, it's good to get him working with the stuff again. We're going to take another look at some of the computer software we were playing with back in the summer too. Mikey seems up to trying again. We didn't get around to any speech exercises today, he gets exhausted so easily and didn't want to try but he agreed to keep working on some of the breath exercises by himself. I reassured Mikey that we'd continue working on both, computer access and speech.
Since he was pretty knackered from the ATEK session we went back to his favorite hall spot, set the TV up right in front of his chair, popped in PeeWee, lined up "Bride of the Monster" -- with a note to play it next -- and left him as we found him, escaping into a movie for a while.
Eleanor R. <eleanor@rockopera.com>
USA - Thursday, December 28, 2000 at 21:57:37 (EST)
12.24.00 - I spent a couple hours with Mikey today, watching movies on his new tv/vcr. He greeted me with a breathy "hi" that was more visual than audible, but the kid's trying so goddamn hard it simultaneously warms my heart and breaks it into a mil lion shards. We were watching "Roxanne" which had Mikey guffawing at Steve Martin's silliness for a while, but as the story moved into the sadder part, Mikey became distraught. After a brief comforting chat in which I catalogued his amazing recovery over the last 10 months, I opted to lighten the mood with some Simpsons. Mikey's been a fan since the beginning (and I mean the Tracey Ullman show beginning), so the Simpsons never fail to get his attention. I had a searing flashback to watching them with him in the Children's ICU: Mikey had a breathing tube in, was barely able to blink yes and no, had a fever, congestion, and the prognosis was Not Good. We've come SO far, and we're still a long way from home. What a year, what an understatement.
M.A. Ricciardi <parkdale@mindspring.com>
USA - Tuesday, December 26, 2000 at 09:43:03 (EST)
12-23-2K -- Mikey and I celebrated Chanukah/Xmas today... I came bearing gifts from Valerie, my mom, and myself.... Mikey was on hallway monitor watch duty again today and didn't want to leave his post. So we celebrated present opening while on his s hift. Valerie got him a great Talking Heads "Stop Making Sense" CD with extra tracks on it which is awesome cause most of Mikey's old faves are all on tapes in the basement so I asked him if he wanted me to make a list of the tapes and then we could go t hrough them to see if he wanted any on cd since a bunch we could probably get really cheap or used or trade in some he doesn't like. He was psyched for that project... I told him I'd get to it after xmas... Then Val sent him some awesome new videos... Mi key was psyched.... Mom sent him a Chanukah Kitty carrying a gelt bag full of flavored chap stick which immediately he had to try all of the flavors... He settled on watermelon. I got him some nifty Calvin Klein Cologne "Contradiction"... he immediately wanting a spritz and we were telling all the nurses to smell him which they all did and were just climbing all over him... see what a good smelling man can do to a woman....
The cool thing about today was that Mikey's spasms seemed to be in better control.... he only had one brief episode which seemed to last for about thirty seconds... Nothing in particular brought it on, and nothing in particular stopped it... I left him as the nurses were putting him to bed to watch his new videos and hopefully dream of sugarplum fairies who take away his spasms and give him his voice back.
Santa: Keep the toys... just give Mikey his voice back....
tina bugara <tbugara@hotmail.com>
meffah, ma USA - Sunday, December 24, 2000 at 00:28:12 (EST)
12.19.00 - Cruising up the hallway of 4 South, I saw Mikey's face break into a smile as he saw me. He greeted me with a laugh, from which I detected a breathy "hi." I immediately pulled out a stack of Mutts clippings, donated by my brother Joe for Mike y's amusement. Although he couldn't see the drawings very well, I described each one of them as I read them to him. Mikey laughed at all of the dopey cat Mooch's adventures and nodded when I asked him if he reminded him of our cat Maisie. I find that Mike y's memory is quite good-not too surprising when you consider that this is a guy who can tell you the set list from a 1983 Elton John concert or some other minutiae from the entertainment world. I've tested his memory a few times, not merely asking him ye s/no questions, but comparisons and such, to see if he really remembers. And he does.
There was a lot of commotion in the ward, something to do with a new arrival or something. Ah, the shaky pageant of life at Spaulding, fraught with mechanical beeps, ambulance drivers, and rushing nurses. Mikey and I decided to adjourn to the 4th floor cafeteria room, to get some peace and quiet so we could practice the speech exercises.
Unfortunately, we were joined by another patient and his wife, engaged in a st ilted conversation over dinner. Many of the stroke survivors I've seen can get cranky and irritable very quickly, trying to communicate words or feelings that loved ones don't always understand. I'm sure that Mikey too gets frustrated (who wouldn't!?) but so far, he has never let his anger take over or push anyone away. Same as he ever was, obvious temporary limitations aside.
After some solid tongue exercises with a raspberry Dum Dum that left his teeth a fetching shade of blue, I wheeled him back to his room, since he had indicated that he was ready for bed. As I was making up the bed and offering him a video ("The Producers"), Tina arrived, much to Mikey's joy. I left them together, Tina exhorting Mikey to speak, and Mikey trying his damndest. He's doing pretty good, too.
M.A. Ricciardi <parkdale@mindspring.com>
USA - Wednesday, December 20, 2000 at 12:22:29 (EST)
12.18.00. Bopped into Spaulding after work last Thursday to see Mikey and found him hanging out in the hallway with Tina. He was in good spirits, mellow, and I got a nice big smile and a mouthed, almost audible "hi"! which was a thrill as he has not been vocalizing with me when I have seen him lately. He seemed pretty relaxed and we had a good set with both "lollipop tongue" excersizes, and deep breathing, shaping sounds excersizes. He was calm and totally consistant in his responses, ready to wor k in other words! Usually the "end of the day" visits are not as productive because understandably he's tired. He WANTED to work and, though he was ready to take a break later - it was awesome to see him be so responsive to direction and positive. Also, there were no neck spasms, his head was back and relaxed, and that was great because the last bunch of times we were hanging out he seemed despondent and angry - of course, totally understandable as well! Just like all of us, Mikey has good days, bad day s, good moods, bad moods, the roller coaster of life! Tina puttered in his room, organizing all of his cds and video tapes and setting up his new totally cool vcr/tv which sits much closer to him than the hospital tv. She rules! Anyway, Mikey was making faces and laughing at Tina's jokes and just quite "with it" as they say. His courage and determination to carry on is just awe-inspiring. Then his friend Joey showed up and he was just beside himself with excitement. Left him in good hands with loving friends who make him laugh. One thing is certain, Mikey knows he is loved. Nothing is more important, nothing makes more of a difference in his recovery, than that.
Linda Viens <linda.viens@eudoramail.com>
USA - Monday, December 18, 2000 at 11:43:17 (EST)
12.16.00 - Blew in for a quick visit with Dee today, since I missed my usual visiting day yesterday. Dee was stuffed into his neck collar (to reduce head spasms), and I do mean stuffed-even though its been trimmed to "fit" his neck somewhat, he still l ooks like Yertle the Turtle in it, and it makes him grind his teeth, probably because its' so damn uncomfortable. I removed it and he was able to control his neck spasms quite well. We worked on some vocalizing-trying to say "hi" but all we got was a repe ated strong huff sound. Well, we're halfway there. He's really trying hard, people. I know that Mikey is in your thoughts each day, so if you could, try willing him some speech energy-he is so close to putting the whole thing together and getting back his voice, that maybe a concentrated dose of love from you all will give him that little nudge he needs to get over the wall.
After exercising in front of the Xmas tree in the 4th floor caf, we went back to his room to watch his new tv/vcr, which handily sits on his table for easy viewing. The hospital one is mounted way up high, and he just can't focus on it. Got plenty of shrugs as I ran through the movie options, until I hit upon "Lolita." Of course I mean the Kubrick version. Mikey and I saw "Lolita" on our first date, so besides it being a spectacular vehicle for the talents of Peter Sellers, it has a fond place in our hearts. I left him there, basking in the glow of Humbert Humbert's tortured longings.
HEY!! ARE YOU IN A BAND?? DO YOU HAVE BAND S TICKERS? Well, send me one, please, so I can finish decorating Mikey's wheelchair! 41 Parkdale Street, Somerville, MA 02143.
M.A. Ricciardi
USA - Saturday, December 16, 2000 at 17:29:45 (EST)
12.12.00 - Mikey was in the hallway again when I arrived, and though he was a bit slow to notice me, once he did see me, he let out a happy croak, which dissolved into laughter. These greetings never fail to warm my heart; the emotional intensity that Mikey displays is very powerful and engaging. It's no wonder he's known and loved by staff , patients, and visitors alike. Just like in the pre-stroke world, everybody knows Mikey.
I hadn't seen Mikey for a week, and was amazed by the progress he's mad e in his vocalizations. His voice is getting stronger (testified by a prolonged aria of laughter and noise that he made shortly after my arrival), and he's now making some sounds beyond the laughter and crying. We are thisclose, I told him, and he nodded. We blew some bubbles; for the first time (for me) Mikey was able to get a few into the air, much to our delight.
Sadly, Mikey seemed racked by small but tight spasms throughout the visit. I asked if he'd like to get into bed, and he nodded. This was a bit worrisome, since he never wants to give up his spot in the hall for bed, but I complied. He seemed a bit phlegmy, lots of coughing and strange rasping noises. I had Tim check all his vitals, but he read normal. I asked Mikey if he felt different or u nwell, and he replied yes, but I couldn't ascertain what exactly was wrong. It's so hard and scary to not be able to have clear communication with him, when there's obviously something wrong but you can't figure out what it is. Tim promised to keep an eye on him overnight, and reluctantly, I went home.
M.A. Ricciardi <parkdale@mindspring.com>
USA - Wednesday, December 13, 2000 at 07:43:26 (EST)
12-10-2K ...Shireen and I spent our Sunday afternoon with the King of Spauling's fourth floor... He was in his usual parking spot in the hallway when we got there, looking a little shabby for a Sunday.... kinda collegiate like he just rolled out of be d or something... We gave him a king-like manicure and whizzed him to our secret hideaway on the 8th floor to read him Maxim magazine and just hang out and act dumb.. when we got up there, Shireen gave her best 33 year old performace of cartwheels which a lmost put her through the plate glass windows onto the second floor patio... Dee loved it.. gave it an olympic sized 10 grin... Shireen is now in need of chiropractic care but that's another story... we then started reminiscing about all the cheap and sle azy songs we could remember the words to from high school and only could belt out bohemian rhapsody and blondie's rapture... dee was laughing so hard.. we're losers we admit it... when he got sick of our antics, we brought him back to his parking spot, am assed his mountain of laundry and left him holding court out in the hallway... His spasms seemed calmer today especially when we had his mind engaged in some story or song or exercise... sometimes mind over matter works... PS: Whoever Nancy is who sent the nurses all the yummy pastry, thanks from Dee and the nurses... PSPS: Hanukauh Harry, will you make Mikey's spasms stop? Please? I'll leave you lots of gold chocolate coins...
tina bugara <tbugara@hotmail.com>
meffah, ma USA - Sunday, December 10, 2000 at 17:32:31 (EST)
12-8-2K... A slick and snowy Friday slid me into spaulding to see the Dee (finally) after battling the nastiest flu on earth... Nyquil girl no-more!!! Mikey was just about getting up -- being placed in his royal throne wheelchair --so we whizzed ourse lves away with Spin Magazine's top 100 grossest moments in rock history... of course it's impossible to find a quiet spot during the day at spaulding, our haunts on the 8th floor were taken, it was too cold for the lobby, so we squirrelled ourselves away in a corner of the second floor cafeteria where we could watch the snow whirl around and read our juicy schlock... Our fave spin rock moments were Chuck Berry's hidden under the toilet seat pee cameras, the picture of a dead GG Allen in his coffin buried in his dirty underwear and the story of the Jim Rose Circus guy eating enema extracted froot loops.. aaah gotta love rock and roll... When it got chilly, I took Mikey back to his room for a sweater, went to talk to his doctor for a few minutes and when I came back, I couldn't find him. The nurses had put him to bed.. I'm like Mikey.. Its too early for bed.. GET UP!!! He was having a neck spasmy day and they really wore him out so I left him to watch trashy tv shows and gaze out at the snow that thank g od he doesn't have to drive in it....
Santa... please make mikey's spasms go away? I'll leave you all the cookies and milk you want... Year's worth...I promise..
tina bugara <tbugara@hotmail.com>
meffah, ma USA - Friday, December 08, 2000 at 18:21:05 (EST)
12/7/00: I arrived at Spaulding a little later than I had intended Wednesday afternoon but that meant I was there to help take the edge off the depressingly early sunsets that the season brings. Mikey, official Spaulding Hall Monitor, greeted me with a smile and a laugh, which ain't Hello but it'll do, and was ready and willing to work on his speech exercises. So we went into the Activity room to work. As with everything Mikey has gotten back since the stroke, nothing comes quickly and nothing comes without setbacks, frustration and a lot of hard work and concentration. Since Mikey is on track to regain speech we're currently following a specific set of exercises which help him re-learn how to breathe properly and how to force the air up through his lungs, shape a letter and create a controlled sound. Understandability is a detail for later at this point. Mikey did great with the breathing and with some of the articulation exercises but he usually can't willfully connect the two and wasn't able to yesterday. We're working toward the willful production of sound. When he's overcome with laughter or wailing he can often shape those moments of sound into something, especially with encouragement, but the real goal is purposeful sound under his control.
Mikey was really with me yesterday so we connected and were able to talk about how he was feeling about the season, about his progress and about the inner strength he's found. When I asked him if he ever thought he could be so strong he shook his head No, but he said he wasn't depressed -- terribly sad and frustrated about things, yes -- but still too determined to give up. Go Mikey. We talked about his visitors, the folks on the Team who have been there since the beginning (he loves you all, don't give up on him!) and, while what he'd really like for Christmas is to be well he'll settle for one of those nifty portable DVD players since his sight problems make seeing the TV (which is in a fixed location in the room, very high up and outside of his limited line of sight) near impossible. Also, he'd like to be able to take his music with him since lately he's been too stir crazy to spend time in his room. So we better talk to Santa about that.
Some people wonder how we know Mikey is with us and how we're able to have a conversation with someone who can't speak or spell. I guess a lot of it is just knowing what questions to ask, reading both his responses and his body language, reading his eyes, which are the window to the soul after all, distinguishing purposeful responses from spasms and being patient and empathic. Mikey can still make me laugh, he can also be serious or playful and continues to turn me on to new music. He tries to listen to everything people send him (although he had a setback when his five CD changer busted) and when he finds something he really likes, requests it over and over. I may not have been as close to Mikey as some of the folks on the team, but I've known him for almost ten years and I know, despite all the setbacks, he's still the same guy. Oh yeah, and that guy's decided to grow a mustache, don't know how long it'll last but he was sporting the beginnings of one yesterday and confirmed that, yes indeedy, that was the plan.
Eleanor R. <eleanor@rockopera.com>
USA - Thursday, December 07, 2000 at 15:04:33 (EST)
12.5.00 As I came up the hallway towards Mikey, I noticed that he was staring into space, and looking rather downcast. He did not spot me from a distance, as he usually does, nor did he laugh upon seeing me. Turns out Mikey's not feeling too well today. He had his pump refilled over the weekend, since last week he had begun to suffer from spasms again. Perhaps the influx of medicine was making him logy; I'm not sure. He agreed to my offer of a trip to the 8th floor to work on speech activit ies (a copy of which has been placed in his Log Book), but there was a seminar going on in the conference room. We went back downstairs to the Activity Room, where we saw his roommate Joe working with PT Kathy on standing. Go, Joe! Unfortunately, Mikey wa s not up for speech work, though he did laugh uproariously for several minutes at god knows what when we got there. He made a few listless attempts at the warm-ups, tried to blow a few bubbles (so close, but he wasn't exhaling hard enough), and then indicated that he didn't want to do them. I asked if he was mad; he nodded. At the situation? (nod) Frustrated seeing his roommates recover and move on, while he remains? (big nod, tears) We cried for a few minutes, and then decided to go back to t he room. Mikey was ready for bed.
When I got him into his room, he seemed to go into that place where he goes when he's just too tired/down/weary/frustrated/everydamnthing to interact. I put in his new Barnies cd, which never fails to bring him t o life, at least somewhat, and sat with him for another hour waiting for an aide to put him to bed. The difficult part is that at that hour, its break time for aides and dinner time for patients, so getting help is very hard, and requires much patience, w hich I am trying to work on. If I had a dime for every minute we spend waiting to get Mikey into bed, I could rent him that private room with the hardwood floors and the personal aide that's across the hall.
Finally Tim and I put him to bed ours elves. I put him into his pjs (okay, johnny), tucked in the teddy bears, and hit replay on the cd. Another sad day for Mikey, and a long night ahead before the dawn.
M.A. Ricciardi <parkdale@mindspring.com>
USA - Wednesday, December 06, 2000 at 08:45:01 (EST)
11.22-11.23.00 - On Wednesday, I found Mikey still in the sack, but dressed and ready to get up. I read to him from some men's mag I picked up in the drugstore, but the experience of looking at girlies in lingerie must be somewhat lost when he's lookin g at 'em with me and not T. Max or some other manly type. Oh well. We did run across a nice full-page ad of some guy grabbing a huge jump on a snowboard, and I made Mikey a deal, which I will record here for posterity (and to keep me from chickening out). The deal is this: Mikey re-learns to walk, and I will learn how to do the trick from the ad on my snowboard without killing myself. Hold us to it.
Once Stephanie from OT got him into his chair, I asked him if he'd like to watch a movie with me, to whi ch he readily assented. I was very pleased that Mikey wanted to watch something, since his eye problems have heretofore made movie-watching impossible. He reports some improvement in his vision, although his binocular focus is not quite where it oughta be just yet. We decided on "The Philadelphia Story" (an old fave of ours), and settled in comfortably to watch. Oh, we just love that Cary Grant!
Thursday: As soon as I was able to chew myself out of the trap I call My Family, I sped into Spaulding to s ee our boy. Here's where the dark side of the holidays rears its ugly head. I had feared that no one would be able to spare the time to come in, but happily, I was wrong.* When I arrived, he was being visited by his sister Shari, in town from NYC, and had gotten a visit from Cat up from the Cape earlier in the day. Mikey was tired (probably an sympathetic L-tryptophan reaction from phantom turkey), so Jessica and I put him back into bed. I popped on Bentham's "The Mauve Decade" (thanks, Ben!) and later Mo rphine, 'cos what Mikey needs are regular visits from The Sandman. Either one.
*Christmas is coming! (sigh) Be sure to drop me an email if you'd like to schedule some time with the Dee!!
M.A. Ricciardi <parkdale@mindspring.com>
USA - Monday, November 27, 2000 at 14:51:11 (EST)
Ruby and I went to visit Mikey on Saturday afternoon. We found him pretty mellow, hanging out in his room watching the tube. He was very very excited and happy to see us, and gave us a very vocal and warm greeting which quickly turned to tears as oft en happens when our beloved Dee is overcome with feelings. He relaxed after a bit, and settled into a calm state but was nodding his head anxiously for a lot of our visit and it was hard to "talk". We played a bunch of CD's and Ruby played with many of Mikey's toys, and made Mikey smile as she entertained herself on Joe's bed. On many of my visits I have been able to get an authentic take on how Mikey is feeling emotionally, but this one was more obscure. In a way his nodding seemed both anxious AND r ebellious, there was a feistiness there in his refusal to answer questions directly - maybe a good thing? What made it feel feisty too was we practiced a bunch of "mad" faces, and I was like - alright - of course you're pissed off - let it out man!! He expressed having really enjoyed going to see Jesus Christ Superstar and nodded vigorously when I said "didn't Chris Mascara do a kickass job?". We played Suzi Lee's cd too in honor of her great musical direction of the show. All in all a good visit - ju st a little frustrating. Mikey was sad when we left - it's hard as hell to leave him. We put in another cd, made him as cozy as possible, and hoped that another one of his buddies would be coming soon to cheer him up, to cheer him on, as he keeps on movi ng closer to the self that he was, is, and always will be...
Linda Viens <linda.viens@eudoramail.com>
Waltham, MA USA - Monday, November 27, 2000 at 13:43:48 (EST)
11-20-2K... Stopped in to see the Dee to find him in the midst of laughing his head off while being verbally flogged by Joe's (his roommate's) wife. Apparently, Joe's daughter came into see her dad (yes, I agree, she's a looker) and Dee got caught che cking out and ogling her curvaceous backside. Joe's wife startled the daylights out of Mikey as she brought him back to this earth with a shrill "Mikey Dee! Are you checking out my Daughter??? I caught you checking out my daughter!!!" Dee turned beet red and just started laughing hysterically... he couldn't stop for about 15 minutes... Joe's daughter, albeit embarassed, was flattered... but hey, what can Mikey say... cooped up in a room with an old man all day... Good for him... He may have had a st roke, but he's still a 38 year old inside... who knows what was going through that head... Alysha Klass...Annie Sprinkle........ John C. Holmes move over.. here comes the Dee...
tina bugara <tbugara@hotmail.com>
medford, ma USA - Monday, November 20, 2000 at 22:43:28 (EST)
11-19-2K.... Nursing the birthday hangover I gathered all of my remaining strength into seeing the Deedle. He was holding court in the fourth floor hallway when I arrived, and I arrived chock full of gossip from the last few JCS/BRO shows and the frid ay night Sheila Divine show. I filled his head mostly with sightings of who was with who, who was there, and a great Tom Kielty story about him fixing his pants zipper with rubber cement, making it protrude about three inches and also making it see thru ( we were trying to decide whether or not it was on purpose because it was very obvious that there was something wrong with his pants zipper)... Tom was very buzzed off the rubber cement fumes as an aside... As Dee got tired and requested to be put to bed ... I put his favorite movie in the VCR "American Beauty"... he got really psyched and wanted me to stay and watch it with him... so I threw off my shoes, snuggled right next to him and watched the whole damned movie with him... he cried at all the prophe tic parts.... He really loved the idea of Lester Burnham recreating his life into something he really wanted to become... god if he only knew how true that movie would become sort of like the mantra of his life when he actually saw it.... recreating your life....again... I think thats why he cried seeing it again. It was cathartic. I asked Mikey if he wanted to go out to a matinee sometime and he really wanted to... so we'll try it... We'll wait for a great movie... maybe at the Kendall.. its close... Mikey's breaking new territory.. he wants to get out!!!
tina bugara <tbugara@hotmail.com>
medford, ma USA - Sunday, November 19, 2000 at 21:18:09 (EST)
11.16.00 - Mikey was not too responsive when I got there; staring into space, not answering questions…I asked if he wanted to go bye-byes and he nodded, so Jessica and I got him in bed, changed and comfy, and he became much more alert. I hopped into th e sack with him, popped in a Kinks cd, and we proceeded to rock OUT! We sang (I sang, Mikey mouthed), drummed, and Mikey took the guitar solo in "All Day and All Of the Night." He can really move his right thumb consistently on command these days!
We h ad some pretty intense staring sessions-he was really focusing on me-and after a day of trying to wring poetry from ninth graders, this rapt attention was like water in the desert! While we were listening to "Lola," I urged Mikey to sing, and he began to make some little noises-not words, but controlled vocalization. Wee-hoo! We're on the way to speech; I can feel it! After reading Val's diary entries, I asked him if he wanted to show me how he can blow a bubble. And he did!! As I prepared to leave, I put in his Fountains Of Wayne cd, and he seemed quite relaxed as I was leaving, so I felt good.
M.A. Ricciardi <parkdale@mindspring.com>
USA - Thursday, November 16, 2000 at 19:13:13 (EST)
11/11-12/00 - Weekend update: I rolled into Spaulding around 5ish, much later than I'd planned, just in time to see Mikey being put into bed. He was quite exhausted, having had visitors in shifts all day long. I had come to give Mikey a long-overdue ha ircut, so undaunted by his in-bedness, Tina and I hauled him up to a sitting position and he gamely held his head up for a good trim. It was difficult getting the back of the head area, also to do so without spilling a bunch of itchy hairs down his neck, which he would be powerless to relieve himself of, but as it so often does, vanity prevailed and the Dee was looking good, and not so much as though baby wolverines had chewed off the back of his head. He refused a shave; perhaps he's growing a sympathy b eard for his fellow thespians currently trodding the boards in Jesus Christ Superstar.
And speaking of JCS, we had a wonderful outing to the show yesterday. Mikey came in the chair car with Val and Tina, and was joined by yours truly and Sandy. We all sat with Mikey in the VIP box, holding his hand, cheering and crying along with him. "Wow," he mouthed over and over, even muttering it a few times here and there. Certain songs really broke him up-"Gethsemane" and "I Don't Know How To Love Him," but the n again, those songs do tug at the heartstrings and Mikey's always been a very sensitive guy. Take it from someone who's mopped him up off the cinema seat after many a Merchant/Ivory film. Certain aspects of the show lit him up-pretty much anything that o ver-the-top T. Max did; Simon Zealotes (I forget her name but we'll just call her Ms. WottaSet O'Pipes); and any and all of Chris Mascara's messianic rock screams. He gave the nod to the two cops, who may not have chomped any donuts, but showed that they knew how to swing a baton at a Christian. He was also delighted when he got a shout-out (and a spotlight) from Pat McGrath as King Herod. He gave a big thumbs up to the whole show and all of the wonderful performers, many of whom stopped by after the show to pay their respects.. It was a very successful trip, one that was made with some trepidations about Mikey's reaction; but we were all very pleased. Ho sanna HEY!
M.A. Ricciardi <parkdale@mindspring.com>
USA - Monday, November 13, 2000 at 12:09:47 (EST)
Got in to see Mikey around 10:30 today -- and got a really loud and happy greeting --- usually in the morning I'm greeted with tears --- however,last night he got a much better night's sleep than usual coz he had gone to bed totally exhausted. Therefor e, we had a fairly productive and decent day together. His breath control has increased even in just these past few days -- he can now blow several bubbles at once --- as far as I know he was barely able to blow one a week ago. Also we had a very long and intense staring contest and he won!! Yesterday he had trouble maintaining eye contact ( with anyone ) for more than a a couple of seconds. Later I left Mikey in the capable hands of Tina who had him cracking up with her various tawdry tales of sex in the city!!
Valerie Kahn-Dorato <vdorato@pacbell.net>
San Francisco, CA USA - Saturday, November 11, 2000 at 17:18:38 (EST)
From the mouths of the two original riot girrrrllls, Valerie Kahn-Dorato and Sandy Monticello... Val: Michelle (nurse) warned me that Mikey was in a bit of a funk of an unknown origin...I noticed that he had trouble focusing on me, as he was gazing at the ceiling and ignoring me...not wanting to do any of his exercises, which is very unusal for him. However, later, I did get him to stick out his tounge by placing my finger over his lips. By the time he was in his chair his neck spasms got pretty bad. Fortunately, Sandy arrived and served as a distraction from his spasms. Sandy: We were listining to classic hits on 'ZLX, and Mikey gave Robert Plant a run for his money, greeting me with a scream right out of "The Immigrant Song". We thumb-wrestled, we blew bubbles, and I let him smell my smoke-addled leather jacket, just t o bring him back to his club-hopping element; he agreed that it stank. We left him exhausted, in order to give him a good nights sleep. Another day, another taste of imperceptable, yet certain progress.
Brian Westbye <brianwestbye@hotmail.com>
Medford, MA USA - Friday, November 10, 2000 at 23:26:18 (EST)
From the pen of Val, as transcribed by Westbye: When I got in yesterday, I found Mikey very awake and working on various throat-clearing and coughing sounds. Initially I was a bit alarmed as I had never heard those sounds before, but after some questi oning Mikey indicated that they were intentional. Later during speech therapy, Tina and I got to observe a fairly productive session, complete with attempts at bubble blowing. He was about 50% there...today, though, he and I were working on this exercis e, and he did blow a great giant bubble! We both watched in amazement as it floated away and landed on him. Dee was so excited that he wanted to do it over and over, but he was a bit too tired to repeat his initial success.
Overall Mikey's mood has been down. When I was last in town about six weeks ago, I got to witness some REALLY exciting progress...went from mouthing words to vocalizing several in just days...and I'm sure he expected that he would keep progressing at that excelerated rate. So now he's very frustrated and deeply dissapointed by his innability to vocalize at will. We all keep telling him how much he's progressed; however, his LIFE hasn't really changed all that much, so he really can't see the progres s. Despite all this, Mikey continues to reassure me that he will keep giving 110%, and has NEVER indicated that he wants to give up. And I continually reassure him that none of us will either. Touche, Val.
Brian Westbye/Valerie Kahn-Dorato <brianwestbye@hotmail.com/vdorato@pacbell.net>
Medford, MA USA - Thursday, November 09, 2000 at 00:48:22 (EST)
11-5-2K... when it rains it pours... and it was raining out this sunday, and Mikey was pouring out the tears... he was very very emotional today... telling us that he didn't sleep well last night and didn't feel well today. He was wracked with neck an d head spasms that just wouldn't stop for anything (we tried deep breathing, coaxing, massage, etc..) and couldn't even elicit a laugh out of the Dee at all today. Mikey had a quite a few visitors that tried their best, Shireen, Valerie, an old friend fr om the Noise named Nancy who filled him in on some rock-scene dirt, and met my old roomie John who drove up from Connecticut with his son Reed just to meet the Dee... Even Michelle couldn't bring a smile to Mikey's face today... was it the weather? or wa s it Mikey just being sick of being at Spaulding?... He made it very clear he wants to go home... Its so tough to see him so sad...
Valerie and I are going to attempt to bring him home for a day.. we know he will be upset, but it may do him more good than harm... After 9 months in a hospital, wouldn't anyone want to spend the day surrounded by their stuff with their three cats, even i f its just for an hour or two? We'll keep bringing it up with Mikey and let it be his decision.. if we get three consistent days of "yes, I want to come home for the day" then its a done deal... UGH, life is a hard decision to make for someone else, but its harder for mikey......
tina bugara <tbugara@hotmail.com>
medford, ma USA - Sunday, November 05, 2000 at 21:01:20 (EST)
11.3.00 - Found a tired but happy Dee today, having had visitors aplenty this Friday afternoon. When I arrived, T Max was just getting ready to leave, as was SF Val, whom I had no idea was in town! Mikey is much cheered by her presence; they've been b uddies for so many years, thru thick and thin, that she inspires him a great deal. Mikey's also got a new roommate (2nd one this week!), whose name is Joe. He is a bit persnickety and seems to have a touch of Alzheimer's, which makes him quite confused ab out where he is and why. I mention this only because I wonder what effect it has on Mikey to be surrounded by older folks in varying stages and conditions...still, today, at least, Mikey's zest for life was peeking through. He invented a new game that inv olves coaxing my face up towards his, presumably for a nose rub, only to bump his head smartly into mine. Ow! Oh, well it makes him laugh.
While I was giving him a massage, we listened to Mascara's Cellar Door cd (he got quite excited at all of Ned's demented drum fills and Chris' unique tunings. He narly jumped outa his chair the second the first song started, since back in his Planetary gig, he had recommended that Chris put "Carnival" as the first track, since it's such a kickass song. After we ban ged out heads to "Chromosome" (since after all, this IS the year of the motherfucker), I put in Max's Ride The Dove. The trippy sixties pop vibe brought on a flood of tears ("Celebrate Life"), but unlike earlier days, Mikey no longer asks for music to be turned off if it makes him cry. I feel that this is VERY significant, that he is accepting and owning his emotions (as well as the unconscious reflexes of them), and pushing through them. Now, if I could only tempt him into eating some pork (he still shak es his head no at all of his old faves).
Since he wasn't ready for bed when I was leaving, I tucked him under a blanket in his chair with the Eddie Izzard video (he does a hysterical God as James Mason thing, which Mikey and I loved, being big fans of JM), and instructions for the nurses to play his new Magic 12 cd when he got in bed. Mikey has always liked to fall asleep to tunes.
M.A. Ricciardi <parkdale@mindspring.com>
USA - Saturday, November 04, 2000 at 14:14:37 (EST)
Thanks to a mild MBTA-induced head injury (X-Rays of my brain showed nothing), my visit with Mikey was a quick one. But it was a good one, as I was joined by old-friend-of-Tha-Dee Hellene London. Seeing The Queen was a fitting tonic for Mikey, as he instantly perked up upon our arrival (in spite of the steady diet of Phill Collins and similar drek emenating from the hall boom box). Kind of a typical visit tonight: we were content to hang in the hall, read him the new Noise, and catch up on scene gos sip. Including The High Ceilings recent sold-out CD release show at the Middle East. I'll admit, that was a bit tough for me, as Mikey only knew me as a hack journalist, not as a working musician. Dee opened a lot of doors for me, and all through our s et I was wishing he were there, front row center as usual. But soon enough he will be. Hellene and I tried to get Dee to use his letter board, as we were stumped trying to think of the name of the BRO star that sat in with The Garage Dog's at Bill's las t Friday, but he didn't feel like it/couldn't use it. Oh well. By the time we left, Mikey was in pain with spasms. Not pleasant to witness. But it's great to see and hear that laugh. The key now, as always, is not to give up. And as long as I have som ething to do with it, that won't be happening.
Brian Westbye <brianwestbye@hotmail.com>
Medford, MA USA - Thursday, November 02, 2000 at 23:17:20 (EST)
10.31.00 - Bearing a skull-shaped lollipop, I headed in to see the Dee yesterday. He was tired of sitting in the hall, but didn't want to go into his room; you know how he likes to be out and about. Seems he gets pretty lonely and bored in there when t here's no one around. So we took a jaunt down the hall to the gym room, where we sat and looked out at the darkening day. Mikey was pretty quiet, though he did play our face game. I asked him to practice wiggling the fingers on his right (immobile) hand, and after much profanity-laden coaxing, he wiggled first the thumb, and then the index finger, over and over. Wee-hoo! Remembering when he first began to move the left hand gives us much hope that Mikey will regain the mobility on both sides, if not all o ver, then at least in his extremities. The effort made in these tiny yet gargantuan moves took it out of Mikey; all of a sudden he grew tired. Through questioning, I have been able to determine (as much as I am able to determine anything that goes on) tha t Mikey doesn't like to be put in bed too early because he's trying to exhaust himself so he can sleep. As we know, he suffers from post-stroke vertigo, and lying down does not give him the peace it should. Add to that boredom, discomfort, and the general frustration we all feel at being in something other than our own cozy bed, and you have one frustrated, fatigued patient.
Attempts at spoken communication were, sadly, still not successful, which frustrated him to tears. At certain points in my visits , Mikey gets a positively frantic look on his face that is heartrending in its frustration, fear, and bewilderment at not being able to communicate. His eyes scream a baffled complaint: why can't I be understood? I wish I knew. I wish I could understand. I left wondering why it must be that I can see my friend, I can touch him, but I cannot reach him.
Please continue to send loving thoughts, sleepy CDs, and a little of your own strength and peace to Mikey. It's a long, long road, and there are no res t stops.
M.A. Ricciardi <parkdale@mindspring.com>
USA - Wednesday, November 01, 2000 at 16:52:46 (EST)
T Max's visit 10/31/00. I stopped in to see Mikey on this drizzly Halloween. He was kinda sleeping when I got there around 11:30, but he soon woke up and only recognized me when I came closer to him (he didn't have his eyeglasses on). I asked him how he was doing, but didn't get a reply. I asked if anyone had visited him yesterday and Mikey broke out crying. It is sad to see Mikey cry but I feel like it shows that he's in touch with his feelings and it's one of the few ways he can clearly express himself. His face was a little r ed and he needed a shave. So I broke out the electric shaver and washed that shadow off his face. He jumped when I trimmed his nose hairs as if I pinched him, but he started laughing when I responded with concern about possibly hurting him. Before I got m uch further a loud voice made me jump, "Are you gonna shave off his eye brows, too!" It was Tina making her unsubtle entrance. She had a bunch of Halloween candy and a big plastic jack-o-lantern to hold it all. I grabbed a Reeses and Mikey looked interest ed. Tina's piercing voice claimed, "Mikey wants some chocolate," so I unwrapped a short Hersey's bar and held it in Mikey's mouth. Mikey managed to bite off a small piece that sat melting just behind his teeth. The chocolate drool made a big mess of his b ib towel. Carol, the physical therapist, came in and was going to show us how to slip Mikey into his chair, but before that happened, Dr. Lang showed up to do her accupressure magic on the Dee. Tina and I hung out in the nurses cafeteria for a half hour t hen went back to Mikey's room. We had to leave his room again because it was time for Mikey to be cleaned up and changed. By the time that was done I had to leave. Tina and Carol were working on getting the Dee up as I was leaving.
T Max <tmaxnoise@aol.com>
Jamaica Plain, MA USA - Tuesday, October 31, 2000 at 15:53:33 (EST)
10.27.00 I came creeping into Spaulding last night around 7, after having called the desk to send a message to Mikey that I would be late. I'm not sure if he got it or not, because I found him staring bleakly into space, and he dissolved into silent te ars when he saw me. Could not get a clear answer as to whether he'd gotten the message or not. He seemed exhausted, so I had him put in bed, gave him a quick going over with a washcloth, and turned out the lights. As his string of starlights winked over u s, we listened to the new Willard Grant cd. A few of the songs brought on tears, but he didn't want to turn off the music. I wanted him to sleep, so I gave him a leg/hand/neck massage with tension release gel, and watched his eyes grow heavy. I described the FEAST I had enjoyed at the caterer's tasting I had been at. Mikey's eyes got very big at the descriptions of the yummy food (especially the tenderloin!), and gave me a BIG thumbs up that he would be present, napkin tucked into collar, at my wedding re ception in June. Yet one more goal to shoot for. You can Do It For The Show, or you can Do It For The Beef, Mikey; whatever works.
M.A. Ricciardi <parkdale@mindspring.com>
USA - Saturday, October 28, 2000 at 13:32:42 (EDT)
10-26-2K... A bright sunny day brought forth an anticipated firing from my job today (yes, I'm looking), so I headed over to Spaulding to share my new found joy and freedom with Mikey... We both were overjoyed at my release from the shackles of the inf ormation systems world and went outside to celebrate... It was sunny.. a warm breeze blew over us... we sang every made up lyric we could think of to the beatles "Michelle" so Mikey could practice them and sing them to his favorite nurse... He ate a whole purple popsicle today and enjoyed it like there was nothing else like it in the world.... he even tried to eat the stick... aah.. Mikey was in a great mood... he even tried to nap in the breeze... but as the sun shifted, it got cooler.. so we went upstai rs and blasted the "Fountains of Wayne" CD... Mikey grooved as I put up a Sheila Divine poster in his room that someone sent him and rearranged some of his wall paraphenelia... It was great to see him in a good mood... it must've been that mix of popsicl e and Michelle....give a man something to eat and something good to look at and yeowch...watch out....
tina bugara <tbugara@hotmail.com>
medford, ma USA - Thursday, October 26, 2000 at 19:30:22 (EDT)
I know I've already posted the details of yesterday's visit but I had to come back again. I just finished scrolling through all of the archived updates, and it was a powerful experience. I've wanted to do it for some time, but I've been afraid to revis it the darker days, when Mikey's abilities were more limited, and when we had so much less to celebrate. It wasn't as painful as I thought it would be, though I write this with eyes brimming with tears. Our Mikey has struggled so hard and so long, refusin g to give in to the prison his body has become. We've gone from assisted breathing and eye-roll communication; powered through the agony of muscle spasms and crying jags; to controlled movement in his head, legs, and hands, as well as the beginnings of sp eech.
These days, Mikey is feeling very frustrated; it's been seven months since he's been at Spaulding, and nearly nine months since the unthinkable happened. Unthinkable to me, or perhaps, to us all; I am sure I am not alone in remembering the many r eassurances I gave to a very nervous Mikey that the heart surgery would go just fine, that there was nothing to worry about. And though we cannot live in fear of the catastrophic, it seems sometimes that it's just when we turn our back is when life bites us on the ass like a peevish lapdog. So is it guilt that I feel when I look back at the surgery that began this nightmare so long ago? I don't think so. Rather, I feel the pangs of a tragedy so bizarre in its irony, there ought to be a law.
In lookin g at the miles of road we have traveled (the "we" being a generous usage-we are certainly there in sympathy, but only Mikey himself truly knows what its like), I feel a tremendous amount of pride in my friend. Awe for the massive undertaking of spirit tha t a recovery from this requires. And gratitude to him, for being a living reminder to me every single day that Things Could Be Worse, and that Things Will Get Better, if you really really try.
Mikey was my biggest champion in the days when I first beg an writing about music, and inspired me to use my voice in a way that I never thought possible. His enthusiasm for life and his determination and conviction in the face of this setback all give me the gentle prod I need every day to come into my classroom and try to teach English to a bunch of teenagers who quite often, couldn't care less. I remember all of those nights in clubs watching bands play to cynical and/or apathetic audiences. Mikey was always there at 9pm sharp, air drumming his heart out at t he front of the stage, giving those bands the ears, the heart, and a reason to be up there in the first place.
Sometimes I picture him in my classroom, too.
M.A. Ricciardi <parkdale@mindspring.com>
USA - Wednesday, October 25, 2000 at 15:42:40 (EDT)
10.24.00 I had a mellow visit with the Dee today. As I came up the hall to his chair, he leaned forward, concentrating hard, and gave me a garbled but bona fide "hello." Yay!! Though later attempts at speech were less successful, he did show me some im pressive effort on his forceful breathing exercises. I would count off three huffs of my own, and then count off his, which, though they were quieter and weak-sounding, were definitely there. He's trying so hard.
We went into his room, where I present ed him with an apple-sized pumpkin. I had him model a face for me while I drew it on in magic marker. We listened to his Poptopia Hits of the 90's and wondered Where Are They Now. I encouraged Mikey to sing along (mouth along) with the lyrics, which he ga mely did. Only the Gigolo Aunts brought on a teary bout, which subsided as quickly as it came on.Other visitors have reported low moods and apathy in Mikey, which is only natural---his progress is almost imperceptibly slow, in both speech and movement, th ough the therapists assure me its not for lack of trying. Mikey's strokes were so severe, that the recovery he has made has astounded them all, and they are quite optimistic about future gains, although they say it will be a long process. I asked Mikey to promise to continue practicig, even when he's all alone. We don't want him just sitting and brooding, but practicing, practicing, practicing. He promised.
After folding his laundry for him (thanks, Linda!) I tucked him in for the night with the Shiva ree cd.
M.A. Ricciardi <parkdale@mindspring.com>
USA - Wednesday, October 25, 2000 at 12:14:57 (EDT)
10-23-2K... Brought Mikey some popsicles today and a big Casper the Friendly Ghost balloon... He wasn't thrilled with either... He ate half a grape popsicle and didn't want the rest.. just didn't have that great Jevity taste. He did perk up when I sta rted singing "Bohemian Rhapsody" to him and he actually mouthed some of the words along... not knowing most of the words, I just hummed some parts and made up stupid lyrics which made him practically spit at me in laughter.... I told him that I bought Jam "Snap" over the weekend and his eyes practically went wild.. I asked him if he wanted me to bring it in and he nodded yes.. So I'll bring it in and we'll spend the afternoon of the next visit singing to it... Maybe singing will get his voice out faster.. ... He totally remembers the words to like everything so why not... He then got tired after our bohemian tyrade and wanted to go into his room and nap.. He now has a new roommate (haven't been introduced).. but I covered dee up in a blankie and let him snuggle up to jevity junkie bear and catch some winks... Music heals the soul... maybe music'll bring Mikeys voice back??? We'll try anything.
tina bugara <tina@eink.com>
medford, ma USA - Monday, October 23, 2000 at 18:08:00 (EDT)
10-19-2K... Well, another roommate has left Mikey's room at Spaulding.. tonite, he almost had another... I stopped in after work to see the Dee and this elderly man was being wheeled into Dee's palace via stretcher escorted by his son. Well, I guess w e turned out to be too much for the pair because they stayed about three minutes and requested another room... Geez... all we were doing were laughing our heads off at the prospect of possibly killing off another undesirable roommate... Some people have s ome nerve... it wasn't like we invited him anyway.... See YA!
So I brought Mikey a treasure of a CD today... the full length CD by the local band "Seventeen"... I was struck by the huge cardboard cutout of three scantily clad women (also on the cover) that stands smack in the front of Newbury Comix and asked the ma nager if I could have it for Mikey's room.. they're holding it for him.. Anywho.. Mikey and I used to roam around the house making up lyrics to a catchy tune by Seventeen called "Number 9".. we couldn't for the life of us figure out the real lyrics, so we would make up the raunchiest lyrics and scream the chorus of "9". It became a hilarious house ritual... Tonite, I popped in the cd, turned it up to "9" and thrashed around the room singing our lyrics.. Mikey followed along by banging his head and mouthi ng the words "NINE".. all the nurses came into watch and were encoraging him to yell it out... but by the end of the song, we were all laughing so hard, we couldn't breathe... I told Mikey that he had to practice saying "nine" so the next time I played it, he could shout it along... I believe we shall try this next time they bring in another roommate as well... Mikey needs a bigger room anyway...
tina bugara <tina@eink.com>
medford, ma USA - Thursday, October 19, 2000 at 20:52:23 (EDT)
10.17.00: A brief, mellow visit today. Mikey was tired and plagued with neck spasms. Though he did laugh when he saw me sneaking from wheelchair to laundry cart all the way up the hall to his parking spot. Making him laugh is the best feeling. I wish I could do it all the time.
After a brief sojourn in the solarium, where we scoffed at "You've Got Mail" on the tv (we saw the original 1930's version and decided it was No Contest), Mikey was tired enough to want to get into bed. These days, he's usua lly reluctant to get into bed, though I'm not sure why: hates the changing clothes/being lifted process, feels dizzy when lying down, just ain't ready to turn in yet? Maybe a combo meal of those reasons, maybe others we can't yet fathom.
After being p ut in bed, and tucked in with ice packs on his neck,, he was much more content. Teddy's tucked under the sheet, Queen's on the cd player, Michelle's in the house, and it's all good. Nighty-night, Mikey.
M.A. Ricciardi <parkdale@mindspring.com>
USA - Tuesday, October 17, 2000 at 18:49:07 (EDT)
T Max's visit on 10/15/00 around 5:45pm I wasn't planning to see Mikey today but when I got an email noting that no one was going in to see him, I figured I should make some time. And it's funny, because most of the time when visit Mikey I'm the only one there with him. When I walked in today, Tina was on the bed with him and she was singing the words to The Beatles' "Help!" She and Mikey were havin' a ball reacting to another very loud patient who repeatedly yells "help." It was a rough "call and response" version of the song. By the time Tin a split, Mikey and I were ready to get down to some boy business. First we went though a 1983 issue of Club (a men's magazine)--Mikey was going wild with yelps and body squiggling. Then I gave Mikey my sermon about sexual healing. He showed a lot of inter est, but we didn't come up with any game plan. Then Pete Sutton popped in. Mikey gave him a big squealing greeting. Pete's leaving tomorrow on a 2-month European tour with The Willard Grant Conspiracy and wanted to see Mikey before he left. Pete is always worth a few hardy laughs. And he kept up his reputation today. We had Mikey's Elton John doll dancin' and singin' "Crocodile Rock." Then we got into a big political discussion. Although Mikey responded that he knew who he was voting for, it wasn't Gore, Bush, or Nader, or Buchanan--my guess is that Mikey will be casting his vote for his nurse Michelle. After our big political talk, Mikey was worn out. I turned out the light in the room and Pete and I said our good-byes to Mikey.
T Max <tmaxnoise@aol.com>
USA - Sunday, October 15, 2000 at 21:33:06 (EDT)
10/12/00 Arrived at Spaulding yesterday to find Mikey in his usual spot in the hallway (next to his "Mike's Parking Spot --all others will be towed" sign). He greeted me with an audible "Huh-huh" and a smile, which I guess means hello. He tired to mouth more but was having trouble creating any identifiable (to me) shapes. Still, the thought process was obvious and I let him know I could at least see his mind working, trying to get his lips to do what he wanted. It's still a lot more than he could do a few weeks ago so we remain excited and hopeful. He's been working hard at making audible sounds with his breath so maybe he'll be able to whisper/breath-speak soon. He was feeling frustrated that more wasn't happening audibly but he did get a good "Bleh" out and a whispered "What?"
He finally had his neuro-op eye consult last week. I asked him about it and he confirmed that the doctor felt that, by blurring out the eye which is giving him trouble (less severe than a patch) that his brain would be able to adapt naturally. One of the many side affects of brain-stem stroke are eye problems. Loss of peripheral vision, mid-line shifts and the development of strabismus (double vision). This can cause terrible vertigo, reading problems, loss of depth perception and dizziness, all of which Mikey's been suffering from. The brain can usually adapt and surpress the "bad" info, though, and use the information from the dominant eye to sort of normalize things again, sometimes with the help of prism glasses (which they didn't think Mikey needed). I was born with strabismus myself and had also done a lot of research for Mikey about it recently so was able to talk about it and reassure him yesterday. He confirmed that he's seeing/feeling better already, so that's a relief.
We also worked with spelling but he's still having a lot of trouble with it. We were getting partial words but nothing was coming together into anything comprehensible. We think it's something to do with confusion at the signaling level, a confusion that occurs when he has to confirm the letter. He seems to have good days and bad days with it. It may get better with the improvement with sight and with us getting more familiar with his internal "shorthand." I also got some good squeezes with his right hand and, for the first time I've seen, a thumb movement with that hand! Mary came by later and we continued to work on spelling and reassuring Mikey that he's still amazing us all. He also said it was ok to post one of the photos of him with Annie Sprinkle here on the site. It's on the Messages for Mikey page. So, if you're wondering how he's looking these days (ok, how he looks nuzzling the ample bosom of Ms. Sprinkle) take a look see, same big goofy smile we know and love.
Eleanor R. <eleanor@rockopera.com>
USA - Thursday, October 12, 2000 at 15:43:05 (EDT)
Upon my arrival around 2:15pm, Mikey was sitting in his wheelchair in the hallway. He greeted me with a sound roughly like "Hi" followed by a just as rough "how ahh ou?" It's wonderful to answer his voice. He had lots of smiles for me. He had one of his eyeglass lenses covered in semi-clear tape--but it was the opposite one from last visit. I asked him if it helps and he gave his nonchalant shoulder shrug. His nurse, Michelle, was there, so I knew Mikey was in a good mood. That's the one thing he is absolutely certain of--he loves that Michelle. We (me and Mikey, not Michelle) rolled down to the 2nd floor cafeteria--it was way too cold to go outside. We were going through this issue of The Noise--Mikey reacted with lots of happy noises to big breasted woman in the Baby Doll Records ad. He laughed at Cynthia von Buhler wearing the "Fuck you, you fuckin' fuck" T-shirt. I was reading to him about the PROWOD when Cat (WKPE) and her friend and co-worker Dan walked into the cafeteria. Mikey made a bunch of noises to greet Cat. We started discussing the letters in The Noise. I didn't know that Dan was the author of the first "anti-curse" letter. This led to much explaining of the response letters from me and K. It was good to be able to discuss the whole process and see that we both had a sense of humor about it. After that, Cat displayed her impressive "nose push ups" and encouraged Mikey to exercise with her. She tried to get on David Letterman's "Stupid People Tricks" with her interesting nose exercise but didn't make the cut. Then Brian Westbye (High Ceilings/ The Noise) arrived with a small parking sign he had made up that read, "Mike's Parking Spot"--to hang outside Mike's room where he sits in his wheelchair. Mikey was showing signs of getting tired when I had to leave. It always feels awkward to leave Mikey, but leaving him with friends made it somewhat easier.
T Max <tmaxnoise@aol.com>
USA - Tuesday, October 10, 2000 at 15:11:02 (EDT)
10-9-2K Dee was in amazingly good spirits yesterday. Perhaps T.Max's mind-melding is really working! T.Max had him in the cafe on the 2nd floor when Dan & I got there. He was reading the latest issue of the Noise to Dee and swapping stories. Mikey le t out a wonderful sound when he saw us strutting up to him -in step with the sassy spanish muzac on the speakers. Mikey and I had our usual face-making contest. I must say, he is getting dangerously close to making my trade-marked "Nose-Push-Ups" (though T-Max may have it down after a few bathroom mirror sessions himself!). I asked Mikey about his latest female celebrity visit, but he only threw his head back laughing and blushed. I think if it had only been T.Max and Dan he would have gone into great det ail! But with a woman in the room, he was quite content to keep it all to himself! Brian showed up a little later and when T.Max had to leave we brought Mikey upstairs to see my latest comedy discovery, Eddie Izzard (imagine Monty Python meets Bill Cosby in British drag)! We left him giggling away with the video running. Sorry we had to head back to the Cape to fight the traffic! Cat (WKPE)
Cat <Cheap@Cape.com>
Hyannis, MA USA - Tuesday, October 10, 2000 at 09:58:09 (EDT)
10.6.00 When I came up the hall today, his face beightened up (he looked pretty zonked as I approached; Jessica said he was tired today), and he said, "Yello!" As in Shtinky Puddin' (cartoon cat from Mutts, our fave comic). As in the word I've been wai ting to hear since February 7th. Could have knocked me down with the proverbial feather-it was all I could do to keep from shaking Mikey like an English au pair, I was so excited. I took him downstairs for an Italian Ice--lemon. We couldn't go outside 'co s it was yucky, but he wanted a change of scenery. He ate quite a few bites of the Ice, laughed a lot, and SHIVERED! as the first icy swallow went down. Then laughed like maniac again. He got tired, so we went upstairs and Jessica and Michelle put him to bed. They showed me the polaroids that Aliza took during yesterday's visit from Annie Sprinkle (pics must be seen to be FULLY appreciated).
It's all good-we're moving towards more controlled, voluntary, articulated speech, but it's still not where Mik ey wants to be. Many tears of frustration from us both, at not being able to get past "I want…" But we're getting there. As the horriibly atonal and predictable Tom Petty says, the waiting's the hardest part.
M.A.Ricciardi <parkdale@mindspring.com>
USA - Friday, October 06, 2000 at 19:07:01 (EDT)
10/5/00. From T Max to Team Dee. " I just wanted you to know I had a nice visit with Mikey yesterday. I walked in and said, guess what happened? And Mikey said, "wha happon?" It was great to hear his voice responding to mine. Mikey asked WHY? a lot too. We laughed and cried together. I took him outside and I told him a story about my crazy 6th grade teacher. Then I asked him if he had any stories about his elementary school teachers. We launched into a long virtual conversation. Hi s face was full of different expressions and his lips moved. He didn't make much sound, but he kept up the conversation and I would respond when his expressions heightened. It was kind of surreal. Mikey felt comfortable with it. Later he needed to be remi nded of the progress he's making. He is so strong, but still depends on the strength we give him." (tmaxnoise@aol.com)
I think T's and Tina's experiences with Mikey yesterday are a reminder of how exhausting the work Mikey's doing to regain his voice (and self) is. His moods, abilities, concentration and will vary seemingly minute by minute. Physically he has good days and terribly bad days. He's a moving target, which means he's continuing to heal. But it's great that Mikey's got friends to challenge him, work with him, remind him of his progress so far and keep him focused on his continuing recovery.
Eleanor R <eleanor@rockopera.com>
USA - Thursday, October 05, 2000 at 13:17:13 (EDT)
10-4-2K... Oh, Mikey... how I wonder where you are sometimes... I got in to see Mikey after work and Mikey was somewhere between Spaulding and never never land... he was drifted off into somewhere just not wanting to talk to me, or to anyone... I asked him what was wrong and he just shrugged. I couldn't get him to answer anything... I asked his nurse Tim what was up and he said that he was like this yesterday too. But Mikey would come back for a good laugh, a good joke, or to goof on someone.. I asked him if he was bored, mad, sad, frustrated, sick of it all, he just wouldn't answer me... I guess he's just sick of all the questions.... He did have a good time checking out all the pics of chics in Maxim magazine though and had a visitor from WMFO come in tonite whom he was really glad to see (some elderly gent with a colonel sanders jacket)... but as Mikey got tired, he slipped back into his land of somewhere and gave me the thumbs up to go home. I hope where ever he goes in his head is full of am azon red headed women and spiral baked ham and is a land where he just never shuts up and plays air drums to his hearts content just like he will again soon....
tina bugara <tina@eink.com>
medford, ma USA - Wednesday, October 04, 2000 at 20:42:03 (EDT)
10-1-2K... I only visited Mikey very breifly today due to a burgeoning head cold/allergy thing brewing that I don't want to share with him... but he was in a good mood nonetheless... got him a new sticker for his wheelchair "Beer, Making whi te guys dance since 1839" which he really liked... Gave him his monthly manicure and pedicure -- he opted for no polish today.. and tried to get him to sing along with "I saw the witch dr. and this is what he said.. he said ooh, ee, ooh, aaah, a ah...etc..".. He mouthed the words but alas no sound.. when Tara his nurse came in, he had a lot to say to her sound-wise but I found it indecipherable.. but at least he's trying with her.. We also tried some musical instruments, the kazoo (too hard) , the harmonica (he needs to blow harder) and the slide whistle (which he can do really well).. we'll get him blowing harder... even if it means getting him a blow up doll that he's gotta fill himself... just for exercise... betcha he'll turn into hurrica ne Dee for that one....
tina bugara <tina@eink.com>
medford, ma USA - Sunday, October 01, 2000 at 19:09:01 (EDT)
9/29/00 - A petty mellow visit with the Dee. He was in the hall when I arrived, and he started laughing as he recognized the deranged person running at him down the corridor. I brought him a present from Tim from Tommy's Darkling Thrush: a " Legalize Shemp" t-shirt, which made him laugh like Ed Wynn on nitrous oxide. The nurses dug it too. Thanks, Tim! We went into his room to sit and chat, but bad neck spasms were making him pretty uncomfortable. So Tim the Wonder Nurse got him quickly into bed, and we spent a lazy afternoon/evening listening to the Truth Serum/Magic 12 tape. We made lots of faces, practiced mouthing vowels, and laughed quite a bit. There were also some tears-grief over the whole situation (lots of Whys); frustration at hearing music he loves and knowing he can't go out and see it live (but he will again, we are sure of it); also at not being able to sleep well (when he closes his eyes, he feels like he's falling). That, to me, is the absolute kicker-that you can't even find escape in sleep, the Great Healer. But he soldiers on.
Despite intermittent fits of sorrow, Mikey continues to hang in there, recognizes that he's making progress, and is still the consummate showman: his repetoire of impressions now includes Steven Tyler and Billy Idol. I tucked him in, slipped o n his eyepatch, and wished him dreams of pirate booty. Or Kate Winslet's booty; whatever works.
Note to Visitors: Mikey's neck spasms are making nods for yes/shakes for no somewhat taxing. He responds much more clearly with a thumbs up for yes and a thumbs down (pressing onto his fist) for no.
M.A. Ricciardi <parkdale@mindspring.com>
USA - Friday, September 29, 2000 at 19:33:09 (EDT)
9/27/00 I visited with Mikey on Wed afternoon and we had what you'd call a mixed bag of a day. Mikey was suffering from pretty bad neck and head spasms, making communication tricky but was still eager to work on mouthing and sound. The tiny taste of speech he's gained has generated both excitement and extreme frustration for him because he's got such a flood of thoughts backed up and, like everything he's gained back since the stroke, every sound will be the result of some serious hard work. Once Mikey was up and in his wheelchair (he's getting a little more strength and is able to help himself get settled much quicker these days, although he's still got more gains to go there too) we got straight to the business of making noise. "Wow" is his current favorite word and he mouthed it repeatedly. I began to fear that it, too, would become a spasmodic reaction so I stressed the importance of working on some of the other letters, especially the tricky consonants. We worked on "m" & quot;h" "b" "d" "c", but Mikey was having a real hard time (less successful than last week) because of the incessant spasms. We also practiced controlled blowing and breathing in an attempt to create a slight sound to go with the letter shapes. His frustration was obvious and he'd frequently dissolve into tears but then pull himself together and go on. I'll admit I've become a pretty hard taskmaster and I continued to work him through the afternoon of ups and downs. We t humb wrestled, I always let him beat me, and worked on stopping and staying the thumb so he can have success with the switch (he's itching to get at that computer).
The biggest success of the afternoon was getting some pretty loud vowel-sounds going. When Mikey laughs he makes noise and he's trying make the most of these moments. I got him going by making stupid faces and calling out "AEIOU!!" repeate dly and then he joined me, the two of us repeating it over and over like a couple of monkeys, Mikey's eyes lighting up at the realization that he was willfully making the sounds (U wasn't really happening but he was trying). So it's coming, in tiny bits a nd pieces. But everyone, the docs, the staff, his friends, and I hope, Mikey, now believes he will speak again, it's only a matter of when.
Eleanor R. <eleanor@rockopera.com>
USA - Friday, September 29, 2000 at 18:09:55 (EDT)
9.25.00 I spent an hour or so with Mikey today. He was in the hall when I arrived, and had an icebag on his still-spasmy right shoulder/neck muscles. He was very tired, and requested to be put into bed. Being upon the threshold of speech seems to have brought a change to Mikey's spirit. Although he still feels intense frustration, he knows that speech is coming. It's just a matter of all of the factors coming into line together (breathing, tongue placement, lip shape, etc.) He is making tremendou s progress, and it's not the inchworm pace we've become accustomed to as part of stroke survival. We all know how integral speech is to Mikey's whole being; without it, he's been a kind of familiar stranger.
Anyhoo, once Mikey was in bed, he was more comfortable. He laughed a lot, made faces, and was very alert and involved in our "conversation." He began complaining of a headache (ascertained only by asking "Is it your…body part here" and getting a thumbs up for yes-neck spasms have made nods and shakes hard to read). As the pain gripped him, Mikey said, "Ow ow ow ow ow." It's so hard to hear the long-lost voice emitting sounds of pain, but I'm glad to be hearin g it at all. I asked him if he wanted me to get a nurse, and he said, "No." I jumped on the bed, thoroughly disturbing the airflow in the mattress. We were both surprised and pleased! It seems that if he thinks about it too much, the speech can't come out. But stimuli (such as pain) seems to overdrive the brain, and it is at those moments, when he's not thinking about speaking, that he is able to do it. We are SOCLOSE to having Mikey speaking again. We're in the neighborhood; now we're just looking for a place to park.
After summoning a nurse to medicate the headache with Tylenol, I decided to medicate Mikey's soul with a tape (CD player is temporarily on the fritz). I left him tucked peacefully in the arms of the Reverend Al Green with Jevity Bear keeping watch. Goodnight, Mikey. Talk to you really soon.
M.A. Ricciardi <parkdale@mindspring.com>
USA - Tuesday, September 26, 2000 at 11:54:04 (EDT
Mikey Dee Updates May 21, 2000 through September 24, 2000
Mikey Dee Updates March 6, 2000 through May 20, 2000
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