All sorts of biking going on

During PT today, I rode over 10 miles in one hour on the leg bike -- the last 11 minutes without any motor support (i.e., the machine did none of the work, it was all my muscles and the e-stim).

During OT, I rode 5+ miles in an hour on the arm bike. 

Go me!  :)

Mike has reconfigured my arm bike FES setup, moving the left biceps electrodes to my left wrist extensors.  Since my left biceps already has good functionality (level 4), the change will give me the opportunity to strengthen the fledgling muscles in my forearm so that I may eventually stop wearing the everpresent wrist splint.

Biceps

Cathy made quite the amazing discovery the other day, and I'm very excited about it – my right biceps is visible. That is to say, when I flex it, you can see it twitch in my arm.

I cannot even begin to express how amazing that is.

A few months ago, I wasn't even sure I could feel it. In October, I could feel it and the therapists couldn't. In November, it was finally confirmed – the therapists could feel a contraction when I tried to move my arm. Now, in December, is unmistakable, it is undeniable – we can actually see it move.

This is very, very exciting.

I feel as if I'm slowly becoming reconnected with myself.


–-

On a mostly unrelated note, I have to say that the terms "biceps" really irks me. Singular nouns ending in an 's' are bothersome enough; singular nouns ending in an 's' that are identical to the collective term they are part of are downright vexing.

Congratulations...

Congratulations to Krista, who graduated from nursing school today. Over the past two years, I’ve watched her knowledge deepen, and her enthusiasm grow, shaping her into the fine caregiver she is today. Though I’m sad to see her move on, I’m glad for the hospital patients that will be the recipients of her quality care during their time of need.

As for me, I am back to the rather tedious and mostly frustrating search for a new assistant. I have an ad running, and have already had several respondents. Let’s hope this round of interviews proves to be more successful, and less traumatic, then the last.

Right Forearm Makes Its Debut

Time is relentless. I can hardly believe it, but a month has passed since my last PT re-evaluation; two months have passed since my last ASIA exam. Thus, today's PT session was spent doing a 30-day re-eval and 60-day ASIA re-exam.

Over all, therapy is going remarkably well. It seems that I'm recovering more function all the time. If only someone had told me years ago that the secret to recovery is slapping on some electrodes and sending electric pulses through my body! (Ok, so that's an arrant oversimplification, but you get my point.) I try not to dwell too much on "What If"; however, I can't help but wonder what a difference this would've made in my life had I known about it years ago.

I've recovered quite a lot of sensation down both of my arms – so much that a couple of spots during today's ASIA exam actually surprised me with how vivid the sensation was. Some spots are still impaired, but much less so.

What's more interesting to me is what I've been feeling in my arms beneath the skin.

Over the past few months, I've noticed a change – more drastic, more significant, in my right arm, but substantial in both – in what I can feel inside, and what I can "move". (Move, here, is something of a relative term – although it is not something you'd be able to see, I am able to flex/contract, or 'move', different muscles in my forearms.)

Before, it was nothing. Well, something – a sense of existence, but more an aesthesis. When I would try to move my fingers, for example, the sensation in my arm, instead of continuing down into my hand, dissolved into the ether just below my elbow. When I wasn't looking, and someone moved my hand, I couldn't tell you how or where they'd moved it (that's proprioception, and mine, for the most part, is lousy below the elbows).

Now, when I try to move my fingers (in either hand), it's much different – there is a subtle, yet distinct, shifting. I can feel the muscles down the outside of my arm tense when I try to lift my pinky away from the rest of my hand. The muscles down the back of my forearm strain when I try to bend my wrist back. Although my fingers, wrists, and hands don't move appreciably during these attempts, I can feel taught strings pulling brightly inside the murky recesses of my forearms.

It's a long ride from Olney to Baltimore – about an hour and 20 minutes without traffic (but there's always traffic). During the 3 or so hours I spend in the van each day I go for therapy, I move things. I concentrate on different areas and try to move. Cara, always with the fantastically useful advice, suggested I look up pictures of muscles in my arms so I can better visualize what I'm trying, or succeeding, to move. That has helped quite a lot.

Last month, during my re-eval, I told Cara I could flex the muscles in my forearm. Though I could tell her which ones I felt working for whichever movement I was trying to accomplish, and they were the correct muscles, Cara could not feel them. After a month's worth of flex-filled commute time and therapy, this month Cara could feel them in my right arm, and actually see them in my left arm.

Now that a neural connection between my brain and my arm muscles has been established (or, more accurately, re-established), the next order of business is to build up and strengthen my muscles – which are, after 17 years of disuse, quite frankly, wasted.

Flashback: Vicki Burrito vs. Nurse Cerberus

It was unlike any wheelchair I’d seen before – a big green vinyl monster with a high, flat back that reclined like a Lay-Z-Boy. I didn’t go anywhere in it, and it didn’t go anywhere when I wasn’t in it. It just sat in the narrow passageway between my bed and the wall, waiting for me to either be dropped in or lifted out.

The nurses rolled the lift in; it looked innocuous enough, though perhaps reminiscent of the gallows the stick man dangles from in the game Hangman. The frame rose up from the crest of a metal U-shaped base that rolled on small casters. A small-scale model of your standard crane lift, but painted an institutional white, so as to impart the appropriate hospital effect. Looking at its combination of insubstantial metallic rods and loose hinges, I did wonder how it was they expected to pick me up and move me with the wheeled metal thing too sparse to warrant the term contraption. Of course I asked the nurses my usual questions – the questions I always asked whenever something new and potentially dangerous, or at least clearly not benign, was brought into my room – What’s that? What’s it for? What are you going to do to me with it? I rarely got an answer.

There were three of them, the ICU nurses, all blending into a bland composite of a grouchy lady in white shoes so as to make them utterly indistinguishable to me – not only now, so many years later, but at that very moment, in that very room.

“Ok, Victoria,” Nurse Cerberus said, (they always called me “Victoria” or “Ms. Popdan” like teachers on the first day of school or my parents when I’m in trouble, but never “Vicki”), “You’re going to get into this chair now. All right?” She tapped the shadowy object looming just beyond my line of sight. It wasn’t a question, or a request for my permission of any kind; more a statement of what they were going to do to me and a cursory confirmation that I had heard what she’d said. I couldn’t see what she was tapping, but deduced that that was the chair I was to be put into.

Transferring from bed to chair or chair to bed was always an event. I dreaded it. Most people never have the experience of being put into a Hoyer lift – much the same as most people never experience a root canal or having their foot run over by a tractor. Those who are spared any of these harrowing experiences should indeed consider themselves lucky.

They began by rolling me from side to side on the bed and stuffing a large, nylon/canvas sheet under me. A sturdy metal rod ran through a reinforced hem on either side of the sheet, from which dangled a long chain at each end, meeting in the middle, to form a triangular shape. When it was flat out under me, the nylon sheet spanned the distance from just above the back of my knees up to the top of my shoulder blades. Next, they pushed the hangman frame up to the bedside so that the arm of it reached across my midsection, about two feet above me. I noticed a hook hanging from the end of the arm. Nurses gathered up the two triangular chains of the sling, which at that point traveled the length of either side of my torso, and attached them to the hook hanging from the arm above me. I suddenly felt like a big Vicki Burrito, but was too frightened by the situation to laugh at the thought as it passed.

Coming from the direction of the back of the Hoyer lift’s arm was a cranking, ratcheting sound, and I felt/saw a quick tug at the slack lengths of my nylon tortilla. I didn’t have that horrid collar on so I was able to turn my head enough at this point to see some sort of handle or lever being worked from the base of the Hoyer lift, but I also did not have my glasses on so it was tough for me to tell what, exactly, it was. The tugging continued, and I watched the arm across me lift up, watched the nylon go taut on either side of me, obscuring my view of the room, and suddenly felt that distinct sensation of weightlessness as I was lifted from the bed.

They couldn’t transfer me while I was hooked up to the respirator. The tube which ran from the trach in my throat to the respirator box wouldn’t reach far enough, or it got in the way. It also could possibly be pulled too hard and dislodge the trach, or damage my throat. So, they disconnected it.

The nurse told me, “Ok, take a deep breath and hold it. I’m going to disconnect you now.”
I shot a questioning look at my Mom, as if to ask if this woman were serious; to determine whether she knew/realized that my inability to both take in a breath and to hold it was precisely the reason that I was on the respirator in the first place. Mom wore a similar expression. She just looked up at the ceiling and shook her head slightly at me, as if to say “I know. Let it go.”
The nurse’s hand reached for my throat. A slight tug, and the tube was disconnected. My breath left me, lungs deflating like a tire that has just run over a nail.

The fact that the trach tube disconnection in this instance was intentional, rather than popping off by itself and leaving me without air until someone heard the shrill alarm and came to reconnect it, was of little comfort to me. Even though the nurses, and my mother, were all right there, could put it back at any time, I was still frightened. And I resented that it could be taken away or returned at will – at anyone’s will but mine.


I hated that respirator. I was terrified of it. So much so that I refused to look at it. For a long time I refused to lie on my left side because I didn’t want to face the nefarious machine with its sinister blinking lights, its delicate switches, its relentless, rhythmic gasping. I contented myself with the ridiculously infantile notion that if I couldn’t see it, then it wasn’t there. But always, I heard it. Gasp, whoosh. Gasp, whoosh. Rather disconcerting. Like listening to your own heart beat.

I hated it and was terrified of it for the same reason – because I needed it. I had never been so completely dependent on something in my entire life. There was not a single thing I could imagine that, if it were taken away, I could not function without. I hated it because I hated having to use it. I was scared of it because it was much too easy for someone to come in and flip a switch, turn it off; or for it to malfunction. I would be completely helpless. I would be able to do nothing but stare at the dead machine, and wait to suffocate.

The trach was uncomfortable in my throat. I could feel it bulging in my windpipe, straining against my throat, like being strangled from the inside out.

As much as I hated the respirator, and as scared as I was of it, I was even more afraid to be disconnected from it. The tubing they used to connect the trach in my throat to the respirator machine did not fit the trach properly. Consequently, it would pop off at random intervals, leaving me airless, the machine next to me shrieking its high-pitched alert to the nurses like a beeper with a bullhorn. My family and friends learned quickly enough how to reconnect it.


The nurses went on chatting back and forth to each other across me in the Hoyer lift. The weightlessness made me a little uneasy, but not nearly as much as the swinging and the lack of air. One of the white-clad army grasped the pole of the Hoyer lift and pulled it, plus one terrified burrito/passenger, away from the bed. And there I hung, ensconced in hospital-scented nylon, dangling from a hangman’s gallows, swinging just enough to make me extremely queasy. As she pushed, and as I rolled across the floor hanging in the pouch like a baby clasped in the curved beak of a giant metallic stork, the sling suspending me swung more and more. But it was over soon enough. I heard the ratcheting sound again, felt myself being lowered in increments, and landed against the cool, impersonal vinyl of the chair.

Then I passed out.

More Progress -- Numbers Going UP!

In addition to quantifiable and documented proof that I've had an increase in motor function, Dr. Becker's evaluation report presented evidence of a return in sensory function, as well.

Much like motor function, the ASIA exam also scores sensory function, however, on a different scale. Light touch and pin-prick (pain) sensation are graded, at each of the 28 key sensory points, as follows:

Sensory Grading Scale
0 = absent sensation
1 = impaired sensation
2 = normal sensation

The official ASIA exam form provides guidelines on where key sensory points for each level are located. It also does a nice job of delineating exactly to where the nerve roots of each vertebral level corresponds to the body.

This (right) is what I like to call the ASIAn Man. Perhaps a modern Vitruvian – only illustrating a different standard of measure. Each area on the ASIAn Man is labeled with the vertebral level that determines its sensory function – i.e., C4 is labeled as such because the nerve roots that carry nerve impulses back and forth to that area of the body insert just below the C4 vertebra.

The black dots in each area indicates its key sensory point – i.e., the spot that is tested with the sharp/light stimulus.

The response to each is graded and recorded on a chart, much like the chart used for scoring the motor function of the exam. The maximum score for each side is 56, for a total of 112 possible points. (If you have no neurological damage, you would score 112.)

There are typically two rows to the following chart - one for upper extremities (C-2 to T-8), one for lower extremities (T-9 to S4/5) - but, my second row is all zeros, and that's rather depressing, so we'll stick with the upper extremities. For now. ;)

My initial evaluation exam resulted in these scores:

Sensory exam, pin-prick

05/06/08

	C2	C3	C4	C5	C6	C7	C8	T1	T2	T3	T4	T5	T6	T7	T8
R	2	2	2	0	0	0	0	0	0	0	0	0	0	0	0	6
L	2	2	2	0	0	0	0	0	0	0	0	0	0	0	0	6

That's grade 2, or "normal", sensory function down to C-4. It's fairly typical, as C-4 is my level of injury. So, that's a grand total of 12.

After just over two months in therapy, my exam score was:

Sensory exam, pin-prick

10/07/08

	C2	C3	C4	C5	C6	C7	C8	T1	T2	T3	T4	T5	T6	T7	T8
R	2	2	2	0	0	0	0	0	0	0	0	0	0	0	0
L	2	2	2	0	0	0	0	1	0	0	0	0	0	0	0

Another lonely 1 in the left column, surrounded by zeros. I am, however, undaunted by what might appear to be a negligible development because the promising part is not so much in the number itself, but the colum it stands in – T-1. That is the exciting part! If there is communication down to T-1, then there is hope for all the zeros between it and C-4. And, if I'm able to recover that one connection after 17 years, then there's hope for all the zeros that come after it.

My light touch scores, which were already higher than pin prick, made a more significant jump.

Sensory exam, light touch

05/06/08

	C2	C3	C4	C5	C6	C7	C8	T1	T2	T3	T4	T5	T6	T7	T8
R	2	2	2	1	0	0	0	0	0	0	0	0	0	0	0	7
L	2	2	2	1	0	0	0	0	0	1	1	0	0	0	0	9

That's a total of 16. Just as is evident in my motor function, my left side is stronger.

After two months in therapy, my sensory function scored:

Sensory exam, light touch

10/07/08

	C2	C3	C4	C5	C6	C7	C8	T1	T2	T3	T4	T5	T6	T7	T8
R	2	2	2	0	0	0	0	0	1	1	0	0	0	0	0	8
L	2	2	2	1	0	0	0	1	0	2	1	0	0	0	0	11

And that is a total of 19. I'm very excited at all the numbers popping up down in the T level -- not to mention thrilled with what I'm now able to feel. For example, I can now sense hot and cold on my upper left arm, a few inches lower than I was previously able to feel. I can feel the stim on the back of my right shoulder, just below my scapular -- both the muscle contraction and the electrode being placed on my skin, neither of which I could sense in September.

If we can return, for a moment, to our ASIAn friend, you can see how my light touch scores translate over:

There are a few discrepancies between the two sets of results (e.g., there was presence of impaired sensation at right C-5 in May that did not manifest in October). Based solely on my own experience, I believe it is because sometimes, where my sensation is impaired, I have difficulty discerning between sensations. In some places,well below any levels that are scored on the ASIA exam, I can feel pressure, but no skin sensation. In other areas, I can feel something has touched me, but I don't feel the sharpness of the pin. So, it's often difficult to say, since I can't see what's going on and my sensory perception is not 100 percent.

Over all, my ASIA scores have gone from 12 and 16 to 13 and 19 on pin prick and light touch, respectively. We're heading in the right diection!

Survey Says... Progress!

OT and PT re-evaluations are done every 30 days. The therapists write an evaluation report for each, to document any changes, record progress made toward therapy goals, and re-establish new goals accordingly. A progress report, of sorts. One of the (many) things I like about the ICSCI is that they mail a copy of each evaluation report to me, so I can easily refer back to the information. (Although, the first couple of correspondences from them were, amusingly enough, addressed to the "Parent or Guardian of Victoria Popdan". Common practice for a children's hospital, I guess.)

Dr. Becker sends me a copy of his evaluation reports, as well. Though I knew I'd made significant progress from what Dr. Becker told me at the end of the evaluation, it's quite another thing to see it on paper. I now have documented evidence that there has been improvement in my sensory/motor function. I can barely wrap my head around it. Even looking at the paper in front of me, I can hardly believe it. But, it's true!

As I mentioned in a previous post, the ASIA exam done during an SCI evaluation quantifies motor function in 10 key muscles – five upper-extremity, and five lower-extremity, on each side – and each of the 10 muscles is graded on a scale from 0-5, with 0 indicating no function and 5 indicating full (normal) function. Maximum score is 100 (50 for bilateral upper extremities, 50 for lower).

The result of my initial evaluation indicates a total motor function score of 5.

After just two months in therapy at the ICSCI, my motor function has increased to 7.

Two points may not seem like much to write home about but, I assure you, it is HUGE. That 1 in the right column might look awfully lonely, standing in that column all by itself, but it is indicative of something I never thought I'd live to see – function in my right arm. That solitary number is not lonely, it is defiant – and it has invited some friends.

Although my right trace triceps is not accounted for here, it is present, and I've been working to strengthen it. It is, however, currently very weak, and sometimes difficult to detect. I suspect it could be that my positioning (supine) during the re-eval exam was different than my positioning (sitting upright) during OT when Mike first found it.

It can also be very difficult to attempt to use a particular muscle because I forget how. I forget how the movement goes. Often times when I try to move something, the other, functioning muscles around it tend to interfere - I'm so accustomed to using them to compensate for the deficit that it's the only way I know how to move, and I can't not use them. This can also make it difficult to detect what is moving.

In all – motor function already improving; from 5 to 7 on ASIA scale.

Tomorrow, I'm back with more good news from the sensory function front.

More from ASIA - Measuring Motor Function

The third part of the ASIA exam tests motor function. It determines the presence, and quantifies the functionality, of 10 key muscles – five upper–extremity, and five lower–extremity, on each side – each of which indicates a specific level of ability.

Key Muscles
elbow flexion (C-5)	hip flexion (L-2)
wrist extension (C-6)	knee extension (L-3)
elbow extension (C-7)	ankle dorsiflexion (L-4)
finger flexion (C-8)	toe extension (L-5)
finger abduction (T-1)	ankle plantar flexion (S-1)

Each of the 10 muscles are tested just as you'd imagine – the doctor or therapist administering the exam asks the patient to move the specific muscle, e.g., "lift your finger up toward the ceiling" or "point your big toe down toward the floor", and such.

From the doctor's or therapist's end, this part can get a little tricky because there are different degrees of muscle function and people who have spinal cord injuries can often flex or contract a muscle without having full use of it, so the doctor or therapist has to feel for muscle movement. As a standard method of quantifying motor function, they use the six–point Motor Grading Scale.

Motor Grading Scale
0 = no active movement
1 = muscle contraction (also called "trace" or "muscle trace"
2 = movement through range of motion (ROM) without gravity
3 = movement through ROM against gravity
4 = movement against some resistance
5 = movement against full resistance

From my end, much like the sensory part, this part of the exam gets a little frustrating. Although I am well aware of the intent behind their asking, being repeatedly urged to move things we both know I can't move is often exasperating. I always give it the old college try when prompted, but nothing ever happens when I'm asked to, say, bend my knee. They always stand there, expectantly, hands on my leg and focusing intently, and I try to move, and nothing happens, and I can't help but feel as if I've failed them somehow. Perhaps my being able to effectively perform only one of the 10 movements (elbow flexion) listed above contributes to that sentiment. I debate diagnostic measures in my head but, for some reason, no amount of rationalizing seems to quash that lingering sense of failure to perform. Logic be damned, some things you just can't argue yourself out of.

This particular point of contention I've long had with the AISA exam is somewhat alleviated, and also somewhat amplified, by the circumstances of my therapy at the ICSCI. It's less vexing when I'm asked to move because I know they're trying to assess and track my progress in therapy (rather than, as it has often seemed to me in the past, satisfy some idle curiosity), but it also heightens that sense of failure because I feel like I should be accomplishing more – as if I should be making faster, better progress in therapy, and my performance during the ASIA exam should reflect that improvement.

Though I never actually expect to move, I still manage to be disappointed when I don't; I can't help but feel that whomever is administering the exam is disappointed, as well. It's rather silly, really. It's not as if I could study for the exam. But, again, no amount of rationalization seems to allay my inner critics. (I have my own personal peanut gallery, but that is a story for another day.)

What I find more exasperating than any other aspect of the ASIA exam is when I feel the muscle move but they don't. I know it's there; I can feel it, I can flex it, I can intentionally, purposefully cause it to contract. Or can I? While I realize that the movement is weak and thus difficult to detect, I'm sure it's there. I'm sure I'm moving it. I'm sure, that is, until the doctor or therapist is unable to detect it.

That particular frustration is typically fleeting, because I know that if I can feel it – even if they can't – there is a connection. Something is getting through. A nerve impulse is making the trip, unmarred and uninterrupted, from my brain to the muscle – that means there is the distinct possibility for improvement.

I know this from experience. I can remember sitting in the OT/PT gym at NRH, not long after I was injured, telling the therapist that there was something in my left arm – that I could flex my biceps. She tested and retested, but felt nothing. It was three years before I was able to lift my hand up to my face; two more years passed before my biceps was strong enough to reliably drive my chair. Who knows if it would've come back at all, if I hadn't been so stubborn and kept trying to move my arm until it did. Who knows how much faster it would've returned if I'd had the kind of therapy practiced at the ICSCI.

60-Day Reevaluation

ASIA exams are onerous, and I often find them frustrating. I've been through two of them in the past week.  

I had my 60-day reevaluation with Dr. Becker, the doctor overseeing my case at the ICSCI, on Tuesday, October 7.  Part of the evaluation was an ASIA exam, which would quantify any changes in my level of sensory/motor function since beginning therapy.

The ASIA exam consists of three parts. The first two test for tactile perception of light touch and pain at each of 28 key sensory points, each correlating to a different level of the spinal cord (C-2 through S-4/5).

The doctor or therapist administering the examination begins by lightly touching an area of uncompromised sensory perception (the face/cheek) with a cotton swab, to demonstrate “normal” sensation – the sensation with which all test sensations are compared during the exam.  Then, the exam begins at C-2.  The examiner touches each of the key points, on both the left and right sides, with the cotton swab, and asks the patient whether he/she is able to feel it.

The pain test is conducted using the same method, but the implement used to induce sensation is a pin, rather than a cotton swab.  The pin stick doesn’t really hurt, but ability to perceive the sharpness does determine whether there is viable pain sensation at a particular point. 

I lay on the exam table with my eyes closed (so I can’t see when/where the sensory input is being administered).  Dr. Becker touches the end of the pin to my face; I feel the sharp point on my skin and see a tiny white dot appear and fade into the blackness behind my closed eyelids.  

“Does that feel normal?” 

“Yes,” I say.

He repeats the test on left side of my neck …  

“That?”  

“Yes.”  

… on my clavicle…

“That?”  

“Yes.”  

… on my shoulder…

“That?”

“Yes.”

… on my chest…

“That?”

“Yes.”

… on my arm, just above the elbow…

“That?”

“Um… sort of?  I felt the pressure, but it’s impaired.”

Then his voice comes from what sounds like the vicinity of my hand…

“That?”

But, I haven’t felt the stick, haven’t seen the brief spark of white pierce the darkness behind my eyelids.

“Um… no.”

“That?” he asks a few more times, but his voice is the only sensory input pervading the darkness.  “No,” I respond to each.  There is nothing.

It’s at about this point of the ASIA exam that I usually become a little frustrated.  Testing beyond my known functional level has always seemed rather perfunctory to me.  I mean, it’s not as if I’m suddenly going to feel something in the lower 85 percent of my body where I haven’t felt anything for 17 years…

A fleeting twinge on the inside of my upper arm.  “That?”

“Um… yes?”  

I’m fairly sure that wasn’t there before.  

Looks like I’ll have to rethink that ‘perfunctory’ theory.  

Catching up...

I've been trying to finish up some posts – I've about 11 posts started but not yet completed – so my "chronicling" might end up being somewhat non-linear over the next several posts.  Some of them will probably be published with a previous time/date stamp, and will apper between existing posts instead of after.  To avoid missing a new post, try subscribing to Warily Optimistic's RSS feed, or to e-mail notification of new/updated posts (In the right sidebar of each page).

Riding the RT300 FES Bike

Tuesday (10/14/08) was an exciting day in PT. It was my first time using the FES bike with my legs.  I was only able to last about 20 minutes; the muscles in my legs have atrophied after such a long period of disuse that, even with the e-stim, they don't have enough strength to continue working long before fatigue sets in.  Cara, master of informative analogy, likens it to a marathon – without training, a runner's muscles might be able to last short distances, but can't maintain a running pace through the entirety of a marathon.  Our goal, for now, is to build up the amount of time I can sustain viable muscle contractions while using the bike. 

Using the RT300 Bike is one of the central elements of the ICSCI therapy program.  The repetitive motion of the legs pushing the pedals helps to re-establish neural pathways in the spinal cord so the electric pulse of messages can travel between the brain and the body, facilitating communication and allowing the brain to control parts of the body.

The bike is a sophisticated, multi-faceted piece of equipment created by Dr. John McDonald, PhD., M.D., based on Patrick Rummerfeild's work.   It has a built-in computer system, running Windows Mobile on what appears to be some flavor of Compaq hardware, with a Bluetooth Internet connection.   Therapists are able to program patient-specific session parameters remotely, via Web browser, or through the touch-screen interface on the bike.  

One of the really great features of this exceptional piece of equipment is that it monitors and records therapy session data such as amount of stim used, amount of energy expended, session time, distance traveled, and several other variables.  It uploads the information to a database to track user progress.  Therapists and users can log into the Web interface and generate reports that list statistics and create graphs to illustrate progress over time. 

Cara attached electrodes to my quadriceps, hamstrings, and glutes, and took the leg rests off of my chair.  I pulled up to the bike, and she and Keena set my feet on the foot plates and strapped my legs in.  They attached the electrodes on my legs to the blue wires that plug into the onboard computer. The bike itself controls the e-stim, rather than a separate Empi unit.

Cara (who is always amazingly well-prepared for everything) had already programmed in all my settings, so she just logged me in to the system and pressed the big green “Go” button on the touch screen.  

The bike started up in “passive therapy” mode, which is used as a warm-up period.  In passive mode, no stim is sent to the muscles; the mechanical device inside the bike turns the pedals, usually for a period of three to five minutes.  As the pedals began to turn and my legs began to move, I just watched.  It was almost surreal, watching my own legs pedal away, moving in a manner I hadn’t seen for half a lifetime.  

It was almost a sensory overload for me.  I’m not accustomed to that much input, and it was almost overwhelming.  For the first few minutes, it consumed my brain power – in fact, I had to excuse myself from a conversation with Cara because the sheer strangeness of the experience usurped my attention and seemed to short-circuit my thought processes and I was having difficulty following what she was saying.

I can hardly describe the sensation.  The closest I could get, at the time, was “floaty”.   Perhaps not the best word choice – words like “floaty” are often used to describe the lightheaded sensation that occurs during a rapid drop in blood pressure that often precedes loss of consciousness.  Cara, who was particularly wary of adverse effects during my initial biking session, was alarmed by my description, until I assured her I meant my legs, not my head, felt floaty.

After five minutes, “active therapy” mode started; the e-stim kicked in, causing the muscles in my legs to contract and push the pedals.  I could discern between the active and passive modes, but I’m not sure how.  How each mode felt to me, of course, is much different than it would feel to someone with unimpaired sensation, so there was not as drastic a difference between them for me, thus making it difficult to pinpoint what had changed.  I will work on isolating the difference and describing it to myself during my next biking session, so I can more accurately convey the experience in future posts.

Though I was able to last only 20 minutes during my Tuesday session, Cara tweaked some parameters and I went for 30 minutes on Wednesday.  We’re working up to doing an hour at a time.  Cara said that an hour using the bike is equivalent to 5,000 steps, which is about half the number walked daily by the average person.

Prelude to a Re-eval

Originally, I'd intended to post the third and final part of the subluxation series today, however, your normally-scheduled reading is being preempted with some breaking news. (I'll resume the subluxation discussion this weekend with some really neat stuff about FES.)


Monday night (10/06/08), when Rich touched my arm, I gasped, and looked up at him, startled.

He snatched his hands back. "What? What's wrong?"

It wasn't any different than the way he usually does it – fingers lightly brushing against my shoulder and upper arm. The muted pressure under the surface of my skin was just as it always was when his fingers reached the middle of my upper arm, but accompanying that pressure was something new. What was different this time, I told him, "That tickled!"

A grin lit up his face, and he repeated the motion. "That?"

"Yes!" I said, probably looking more bewildered than vellicated by the touch, taking in the sensation as if for the first time. It had been so long since I'd felt anything but the vague echo of presence in that area of my arm that I'd forgotten anything was ever there; the sensation was almost unrecognizable. Bright ribbons of current followed his fingers across my skin and dissolved into white hot sparks that shot through the murky ether of my forearm and hand.

And, there it was – vibrant, unmistakable, alive. Sensation.

I can now feel an area in my left, upper arm that I have not been able to feel in 17 years.

"Big deal," you may say – and it may not sound like much, because it doesn't do much for me functionally – but, I assure you, it is big. It is huge. Beyond the augmented sensory perception – which, in itself, is very cool – the significance of this regained sensory function lies in what it indicates: that after 17 years, it can be recovered.

The experience I've just recounted; the experience, in this very moment, of my sleeve rubbing against my arm as I type these words – impossible, according to conventional thought on SCI. Sensory perception at that particular point of the arm is at level T-3. After 17 years at level C-4, I should not be able to feel that.

But, I do.

Tomorrow: re-eval and documented proof.

Subluxation -- Part Two: Leukotape

Working in concert, the therapists have been addressing the subluxation during both my physical therapy and occupational therapy sessions. They use a multidisciplinary approach -- addressing the subluxation from several different angles and using a variety of methods, all with a common goal: to restore joint integrity.

Ultimately, we will rebuild and strengthen the atrophied muscles in my shoulder and upper arm. Until the muscles are strong enough to hold the humerus in place, however, Mike and Kristen, my tag-team OTs, have been taping my shoulder.

During the 2008 Summer Olympics, there was much talk of the tape many athletes were sporting – Kinesio® tape. Kinesio tape does more than look fierce stretched across bulging muscles in swaths of bright colors. It’s used to support joints and muscles to prevent strain, damage, and injury to the taped area.

Leukotape, the tape Mike and Kristin use on me is similar to the Kinesio tape the Olympic athletes wore, but Leukotape is much more rigid and provides more support. This high-tensile tape is used to realign my shoulder, and keep the joint intact and in place, while I work to strengthen the muscles in my shoulder and upper arm. Essentially – training wheels for my shoulder.

It's amazing, the difference Leukotape makes. For the first time, in as long as I can remember, my shoulder feels like it's a part of me. It feels solid. It feels whole. Since my shoulder is sitting in the correct place, it's not always uncomfortable, so I don't need to ask someone to move my arm as frequently. Best of all, my shoulder hurts substantially less. In fact, I'd go so far as to say sometimes it doesn't hurt at all. Bonus!

Read Part One of Subluxation

"Subluxation" is not nearly as fun as it sounds

As I've mentioned, one of the major obstacles that complicates therapy and hinders my progress is my subluxated right shoulder. Subluxation is a partial dislocation of a joint. Shoulder subluxation is typically, as it is in my case, caused by weakened muscles and connective tissue around the glenohumeral (ball and socket) joint. When the muscles are too weak to hold it in place, the head of the humerus bone slides out of the glenoid fossa (the concavity in the head of the scapula that receives the head of the humerus to form the shoulder joint).

At this point, the gap between the head of the humerus and the shoulder socket in my right shoulder is about the width of two fingers. In my specific case, what might've been a slight subluxation was exacerbated by years of people pulling on my arm when using it to move me. The frustrating part about that is I've always known, and been quite adamant about, that no one can lift me under my arms to move me or my shoulders would dislocate. I did not realize, however, that the force applied to my joint in that situation would be substantial enough to do damage. Apparently, it is. Myopic foresight makes for grueling hindsight.

More frustrating than knowing I could've prevented some of my current situation is that much of it could've been avoided if someone had taken my concerns about it seriously. I have for years been telling anyone who would listen that there was something wrong with my shoulder -- it felt loose, it didn't sit right, and it hurt all the time. I was always told either it was fine, or there was nothing that could be done for it.

This is a perfect example of why I love KKI and the fantastic therapists at the ICSCI. When I went in for my evaluation in May, it was the first thing they noticed. While palpating my shoulder, the PT and OT discussed the discomfort I was having.

"There's something wrong with it, isn't there?" I asked them. "It's not where it's supposed to be, right?"
Both therapists confirmed my suspicions. The difference, this time, was that they said, "We can fix that!"

Without a Net

I've hired a new assistant, Sonia.  So far, she's really great -- picks up on things quickly, understands what the therapists are teaching her, and doesn't make me fear for my life each time I get into the van.  We made it to therapy all three days this week.  

I realized something on Tuesday, as Cara was transferring me from my chair to the standing frame and Sonia watched with a rather concerned look on her face.  Hanging from the ceiling in the Goldman lift*, watching the floor pass by several inches below my dangling feet, I suddenly realized that this was the first time I'd ever been out of my chair without a safety net.  By safety net I mean someone with whom I felt secure, someone who could get me back into my chair unharmed and straighten me out so I'm sitting properly.

Getting me situated in my chair is much more difficult than you might think, particularly with the deplorably scoliotic state of my back.  We need to make sure my hips are even (not sitting too far to one side or the other), and that I'm pushed all the way back in the seat.  Then, we need to align my trunk, which involves a shifting around of ribcage, realignment of spine, rotation of shoulders.  It looks terribly uncomfortable, but it really isn't.  Cathy has this process down to a science, and Rich has elevated it to an art form. 

Though Cathy and Rich are both very adept at correcting my posture, they are about the only people who are.  It’s not something I can easily direct someone how to do; it’s more one of those things that needs to be demonstrated.  This being the case, I don’t go anywhere that I need to get out of my chair without one of them in tow.  Consequently, I don’t get out of my chair during the day, which is why it was hard for me to get used to doing so when I started therapy.

So, hanging from the ceiling, watching the floor pass beneath my dangling feet, I suddenly realized that I was out of the safety of my chair, and had no foreseeable means of getting back in and situated properly, and nearly had a panic attack.  I was on my own – a concept which, to me, is utterly terrifying.

Although this therapy program is intended to reawaken dormant connections in my body, it has done much the same for my mind.  Being put into a variety of situations that I have not been in (whether due to lack of opportunity, or my intentionally avoiding them) for quite some time has forced me to confront fears, change perspectives, and shed the complacency I’ve built up.  Sometimes, it’s more difficult to contend with than the physical aspect. But, I believe it is part of the healing.

*still trying to find a good image of the Goldman lift.  Will update when I find one.

Rich saves the day... again.

I think he must park his trusty white steed around the corner, because when Rich valiantly appears, in my hour of need, to rescue me -- as he invariably does, no matter how treacherous the peril I've found myself in on any given day -- his equid friend is nowhere to be found.

This particular debacle was unavoidable. The new aide I hired started yesterday (Monday, 9/9). We discovered, while en route to the MSC to pick up a few remaining items from my office, that she was unable to drive my van. Now, I've been in the van with dozens of people who were new to driving it, but never have I actually been afraid for my life. There was drifting into other (occupied, oncoming) lanes; drifting on to the shoulder, into the grass, against the embankment on Needwood Road; nailing the curb with both passanger-side wheels. No hyperbole, no overstatement -- I was lucky to have made it home.

Obviously, that employment arrangement was not going to work out for either of us -- a decision that left me both back at the employee-search drawing board and without transportation to therapy today.

Enter Rich (amid much trumpeting and fanfare to announce his gallant arrival), who offers to take me, despite having already taken the day off on Friday (9/5) for the same reason. After already missing four days of therapy, I was loathe to miss another. Rich, knowing how

important it is, didn't want me missing any more, either. I didn't even ask him -- he just volunteered. After I'd exhausted all other means of transport and, finding nothing, was resigned to missing yet another day, I was rather morose. As I sat, brooding, he said, simply, "I'll ask Martha," and began tapping away on his laptop keyboard.

Whatever would I do without him? I dread to think.

God bless Martha, his boss, who has been so very generous and understanding!

So, thanks to Sir Richard the Awesome, I made it to therapy today. Cara continued her FES lesson from Friday, instructing Rich on where to put the electrodes on my muscles and how to feel for the muscle contraction, how to program the Empi unit, and how to modulate the e-stim pulse strength.

We've found that I can get up to about 70mA on my leg muscles, but I can't tolerate much more than 40-45 mA on my arms and shoulder or it becomes too painful.

Single White Cripple Seeks Competent Aide

As Krista has returned to nursing school for her fall (and final) semester, and I had no one else to take me to therapy, I missed my fourth day of therapy.

Finding a new assistant is never easy, but this time has been much more difficult -- the prospect of driving 72.8 miles (round trip) seems to be a deal breaker for most.  Can't say I blame them -- it's quite the long haul.

View Larger Map

Beyond applicant misgivings about the driving aspect is my own apprehension about the qualifications of those who have been applying.  Where I could look beyond or work around language barriers in the past, the difficulty in communicating will be magnified by the intricacies of the therapeutic methods they will be learning in order to conduct my home-based therapy program.  I'm not quite sure what I'll do about that.

If you know of someone looking for a job as a personal assistant, please do send them my way. I can imagine there are much more interesting jobs to be had, but, I am, at the very least, entertaining.  ;)

Back at it

I've had to take three days off of therapy because of a UTI and associated complications.  I really didn't want to, and usually I'd suck it up and go anyway, but at first we weren't sure what was wrong with me, and I didn't want to risk bringing something into a gym full of immunocompromised people.  

Hopefully, I haven't set myself back too much.  I returned today, though still not feeling well, and was quite happy to be back.

Flashback: Reborn

Bright light pressed on my closed eyelids. I opened my eyes, let it in. Everything around me was new.
I had just been born.
Just come into existence.
I had not been anywhere before now.
I had not been.
I wasn't there, and then I was.
My head swelled with pain.
A woman with bright red hair and a pleasant face moved into the light above me.
Mother.
My mother.
Mom.
A profound comfort filled me, and I smiled.
That's my mom.
The thoughts were coming faster now: I was me. Vicki. Me.
Then the thoughts came with questions: What's going on? Where have I been? Where am I?
I must have asked the last one.
"You're ok. You're going to be fine. You're in the hospital."
Hospital… sick… hospital… something wrong, bad… Hospital? Am I sick? Something wrong with me?
"You're ok, though. Don't try to move."
My mother's words came fast; I had trouble latching on to them as they passed by me in her calm, familiar voice. Her hand reached up and stroked my forehead, pushing back and smoothing my hair in that habitual, comforting way she always had when we were sick. I had no fear. I was fine. But ... hospital? Why?
"You were in an accident. But you're ok now."
— Oh.
A flicker of confusion, a quick, sickening realization in my gut. Then the fear came — sudden, fast, startling.
I vaguely remembered a similar sensation; I had woken up to this situation, briefly, before, when it was dark, and I was alone, and couldn't move. I was trapped — ensconced in, distended by, wet concrete that usurped all sensation and motion. But it was just a nightmare, supposed to be better when I woke up. But it isn't better. What the hell is going on?
I asked Mom — Am I still dreaming, or am I awake yet?
Then another disquieting realization: I'd asked questions, but said nothing. I knew I formed the words with my mouth, but something was wrong… . If I could just put my finger on it… I heard the questions in my head, but not in my ears.
I could not speak.
My mother must've seen the panic on my face.
"Don't worry, hon. You're on a respirator. It's breathing for you. You won't be able to talk. But we can read your lips. Can't we, Patty?"
My younger sister's dark head appeared beside my mom's bright one.
"Hi, Vic," she said through a forced smile, flopping her hand in a silly little wave.
— Hey, Pat. Mom, I don't remember any accident. Are you sure?
"Yeah," Patty started, "you were out with —"
My mother glared at her. Patty clammed up. She looked distinctly uncomfortable.
"Yes, you were in a car accident."
— Was I driving?
"No, sweetie. You weren't driving."
Good, I thought. All I had was an expired learner's permit. If I'd gotten into an accident already, I'd never get my license. No license come September would mean my senior year was going to suck, big time.
— Who was driving, then? Who was I with? Where was I?
"You had gone out with Kevin and Tim," Mom told me. "You were on your way home from Lakeforest Mall."
The mall. What was I doing at the mall? I waited, but no images surfaced.
"Yeah," Patty added, "you got off work early, so you went out."
Work. Ah, yes. Pizza Movers.
— What's wrong with me?
"You have a broken neck."
No wonder it hurts so badly. I broke it. Oh, well. Broken arm, broken neck - same difference. I'll be up and around in no time. Wonder what kind of cast they put on a neck. I moved my head slightly from side to side. Heavy pain seeped through my neck, up the back of my head, but I could move freely. Guess they didn't put the cast on yet.
— How long have I been here? When can I go home?
"You've been here awhile… close to two weeks." She tapped a small, blurry grid on the wall. "Today is June 8. It happened on May 25."
The date seemed innocuous enough; I remembered nothing special about it then, although it would soon become a date etched indelibly into my life. I'd not expected that I'd been in the hospital that long, but unable to escape the feeling of newness, of just having come into existence, of not having yet been, I took them at their word.
— Can I go home soon?
"Oh, sweetie." My mom rubbed my arm, a pained smile cracking her face, "You're very sick. You're going to be just fine, but right now you're still sick. We have to get you better first. Ok?"
I nodded. Pain shot through my neck. My broken neck. The pain rocked my head, slightly dimming my vision. Must've been some wreck. I cast my mind back, straining to remember that night — what had happened, where I'd been. Still, only blanks.
— Where is Kevin? And Tim? Are they OK?
Patty glanced furtively at my mother, then disappeared behind her. It was only my mother's face hovering over me now.
"Tim is a few doors down the hall. He broke his leg pretty badly — "
"In like three or four different places," Patty piped in from somewhere behind her.
"He also broke his wrist — "
"And messed up his elbow. They put screws in it! It was pretty nasty," Patty added, reappearing briefly beside my mother A deep flush had settled over her face, and her green eyes shined brightly.
"But he's going to be just fine," my mother continued, after shooting a semi-reproachful look at at my sister. "In fact," she went on, brightening up a bit, "They're moving him out of the ICU tomorrow. He's going to have to use crutches for a long while, but he'll be fine."
It was quiet for a moment. Took me a minute, with the sluggish pace of my brain, to let it all sink in. I waited for them to finish, but neither said anything.
— Where's Kevin? Is he here too? Is he going to be OK, too?
The uncomfortable look on Patty's face had faded some, but as she caught my eye it suddenly returned and again she disappeared into the periphery. My mother took a deep breath, and spoke very slowly, softly.
"I'm sorry, Vicki. Kevin didn't make it."
I struggled to grasp her words, but understanding eluded me as deftly as memory had. Didn't make it. Didn't make it... The words reverberated, like bass hits. Didn't make it where? To the hospital? Was he somewhere else? Where else could he be? Did they let him go home already? Maybe he'll visit…
— What do you mean?
"I'm sorry, Vic. I'm really sorry, but Kevin died."

The word hit me like a bat, driving the confusion from my head. Died? She couldn't have meant that. Or I'd misunderstood her. Or she'd said something else. It simply wasn't possible. I'd just seen Kevin yesterday… or however long ago it was they say the accident happened. He drove me home from school on Friday. I sat with him at lunch. He was just here. He can't die — he's only 17! There's nothing wrong with him! Nothing! No!
— No! I said firmly.
Somebody had gotten something wrong, somewhere. He's probably just down the hall. Maybe on a different floor. Or a different hospital. Somebody had gotten their information mixed up.
— No! I said again, and shook my head in emphasis of my refusal to believe such a blatant untruth. Hot pain rocketed up my neck, searing through my head and eyes.
Tears trickled down my mom's cheeks. "I'm sorry," she kept saying, "I'm so sorry."
I cried. Mom wiped the tears off my cheeks hurriedly, softly uttering those mother-comforting sounds shh…it's ok…shh…. I cried, but I didn't feel it. I waited for the pain to come rushing through me, fill up the emptiness, but I just couldn't believe it enough for it to break through. It just wasn't so.
She reached down and grasped my hand; I felt only a slight pressure, as if my hand and fingers were wrapped in a thick towel. My arm felt rather odd — a dull ache in my wrist; up my forearm, a muted pins-and-needles sensation as if my arm had fallen asleep. Almost a buzzing sensation. But distant, an echo of the feeling. A layer of insulation kept the pins and needles from poking through, sticking my skin; held them in, swarming close to the bone like bees in a hive. It seemed almost as if the cast were inside my arm. But that couldn't be. My mind returned to the possibility of a nightmare, still searching for some plausible, lucid explanation. Still, the dull pressure on the skin. The buzzing inside. I couldn't figure it out…
— What happened to my arm?
I lifted it off the bed, trying to hold it up so I could see it. It was heavy. Almost too heavy.
"Nothing. Your arm is fine," my Mom said. "Don't try to move it."
— Did I break it? Is it in a cast?
"No, but you have an IV in it, so hold it still."
— Oh. Feels funny…

My mother's eyes welled up again.


A similar scene replayed many times over the first two weeks, during my semi-cognizant state. I was not in a coma, but between a severe concussion and the drugs they had me on for pain, I flitted in and out of consciousness; I still have no recollection of the first two weeks or so after the accident. I can only imagine how it must have been for my family:

"Where am I?
"In the hospital."
"Why?"
"You were in a car accident. You broke your neck."
"Oh. What happened?"
"You were out with Kevin and Tim. On your way home."
"Are they OK?"
"Tim is hurt, but getting better. Kevin died."

And they would have to watch my face crumble as recognition set in, wipe away my tears and keep my nose from running down my cheeks and neck.

"Why can't I feel? Where'd my legs go? Oh, God — did they cut them off? I can't feel!"
"Honey, it's the paralysis. Spinal cord… nerves… damage…"

Sometimes I would understand, and they would have to talk me out of hysterics. Other times I would stare blankly, waiting for someone to please explain to me what the hell is going on, and they'd have to go through piece by agonizing piece until I understood, watch each fact strike me like a fatal blow, then calm me down when recognition trenched my murky brain.
Eventually, I would go back to sleep. Drugs, fatigue, shock, a combination of any or all would drag me back under into my timeless unconsciousness, my ignorant bliss, my comfortable numb. And eventually I would wake up again, tabula rasa, desperate for someone to fill me in on what in God's name was happening; and for them, the process would begin anew.

"What? Where?"
"You're in the hospital. You broke your neck. You can't move."

And I would cry….
To this day, I don't know how they did it. Sometimes, above and beyond all logical/rational reasoning, I hate myself for putting them through it.

But that was just the beginning. For all of us.

Wrapping up week 3

I am beginning this program at something of a deficit -- I have quite a few issues that must be resolved before I am able to begin therapy in earnest. Among these issues are:

scoliosis
subluxated right shoulder
sacral decubitus ulcer
heterotrophic ossification

Not the least of these issues are the musculature-induced scoliosis in my back and the subluxation of my right shoulder. I suspected both would be a hindrance, but each has proven to be a significant impediment.

This therapy program is not a quick fix -- it's not even a sure thing. It will be years of work, and progress will be slow -- yet I find myself inexplicably excited by the prospect. 

The ASIA scale and the cervical spine

C-4 ASIA B (incomplete) was the diagnosis arrived at in May 2008, during my initial evaluation at the Kennedy-Krieger Institute, and it was my first spark of hope.
The American Spinal Injury Association (ASIA) Impairment Scale is the method by which doctors can classify an injury in uniform and unambiguous terms. Its parameters provide guidelines by which to determine whether an injury is complete (no motor/sensory function below the level of injury) or incomplete (some degree of motor/sensory function present below the level of injury). The scale ranges from A to E, with A indicating the most impairment and E indicating no impairment.

A = Complete: No motor or sensory function is preserved in the sacral segments S4-S5.

B = Incomplete: Sensory but not motor function is preserved below the neurological level and includes the sacral segments S4-S5.

C = Incomplete: Motor function is preserved below the neurological level, and more than half of key muscles below the neurological level have a muscle grade less than 3.

D = Incomplete: Motor function is preserved below the neurological level, and at least half of key muscles below the neurological level have a muscle grade of 3 or more.

E = Normal: Motor and sensory function are normal.

The C-4 designation indicates an injury at the fourth vertebra of the cervical spine. Nerve roots, which insert at each level of the spine, correspond to different parts of the body, thus where the injury is located on the spine determines what level of functionality the injured person will have. The nerve roots of the cervical spine and corresponding levels are:

C3 - an injury at this level or above will result in respirator dependence
C4 - shoulders, diaphragm, weak biceps
C5 - biceps, deltoids, some wrist
C6 - wrist, thumb
C7 - triceps, fingers

My initial injury was C-5/6, but that's another story for another day. Suffice it to say, when I left primary care, five weeks after the accident, and went to rehab, my injury level was at C4, and that's where it is today.

In the first few months post-injury, there was some debate as to whether my injury was complete or incomplete, but after I came home from rehab doctors told me it was in fact complete (or, ASIA A), and I'd come to accept that. So, ASIA B was news to me.

It was my first spark of hope, but also the first indication of what I'd had wrong all these years. Everything I knew about SCI has been turned upside down. All the definites have become maybes, all the impossibles, possible.

Trace triceps

My new OT, Mike, held my left arm in his hands. He asked me to pull my hand in toward my face against resistance, carefully assessing my strength and control of my biceps and determining what muscles I was using -- that I had the ability to use -- to move my arm. I pulled my hand up with fairly little difficulty. He nodded and indicated as much to Jen, the student OT who is training with him. She jotted it down on the page with other statistics about the sensory-motor function of my upper extremities.

"Now, push your hand out toward me," he said.

I already knew it wouldn't move, but I did as I was asked, and attempted to push my hand out and straighten my arm.

Mike nodded. "Trace triceps," he said to Jen.

My breath caught in my throat as the world opened up. On the scale that muscle movement is measured, a "trace" is just above nothing. But, it is still more than nothing -- which is, up until this afternoon, precisely what I thought I had. That trace can be built up, strengthened. I suddenly have the prospect of the use of a new muscle, and all the possiblities that use affords me.

The coming months will, I think (or, at least, I hope), be a series of small victories.

Wrapping up week 1

Today I stood up for the first time in 17 years. I forgot how far away the floor is. I'm debating posting some pictures of it. As soon as I get over myself, I will.

I'm getting used to getting out of my chair -- something I don't typically do, unless I'm going to bed.

Today was my first day of therapy at the Kennedy Krieger Institute. I was only slightly anxious before going into the gym -- it's been quite a long time since I've been in one, and I had no idea what to expect -- but I know it would've felt a lot worse if Rich hadn't been there. I was so glad he went -- all the trepidation and uncertainty had vanished, and I knew I was safe because he was there.

My new PT, Cara, is but a wisp of a woman -- a mere 5' tall -- and I immediately wondered how she would handle moving me, but she did very well.

Flashback: Awakening

The picture fades in slowly. Grains of light wash each pixel, illuming the darkness in shades of gray. The impression of just having been somewhere lingers about the edges, but I am unable to grasp the disintegrating threads of memory as they recede into the blackness. No telling where it has gone, where I have been. The memory disappears in the transition to cognizance. I blink

Still seems dim. I try to blink the confusion out of my eyes; it is resilient. Mud-colored walls surround me. Air seems hazy, thick with darkness. Unfamiliar. Strange.

Fear wells up inside me. I search for a familiar object. Something. Anything. There is none. Just the thick air. Just the mud-colored walls. Just me. I’m alone. I’m alone in this… room. How did I get here? Where have I been? I grasp at threads dangling just beyond my reach… they vanish. My mind feels sluggish, heavy. Restrained. I want to ask someone. But whom? I am alone. In this… room. I have to get out!

I try to move. Panic. An incomprehensible weight ensconces my body. My body. Where is my body? Am I dead? Where are my hands? Where are my legs, my feet? Panic. Someone has taken my body and filled it with sand. Dark, heavy sand. I feel my body, but it is only a whisper; a shadow cast behind me on the gravel road; a reflection in a rippled pool. Maybe I am dead. Maybe I am separating from my body.

My head is filled with sand, too; the thoughts struggle through the heavy grains, pop out into existence, then vaporize, are sucked back into the greedy darkness.

I try to lift my head. Pain sears through it, down into my neck.

Pain. I must be alive.

I try to call out. I can make no sound. But I feel my mouth. Swollen tongue. Dry. Jagged teeth. Pain. There is something in here, in my mouth. Sharp. Glass? A rock? I try to spit it out, but cannot find the air to expel it. I cannot determine whether it has made it past my lips.

Just as my terror peaks, I catch sight of one familiar object. Winnie. My Pooh bear. He could only have been sent by God to assure me I’m ok. Winnie the Pooh’s been my symbol of comfort, solace, safety, since I was a baby. I’ve slept with Winnie tucked under my chin -- just as he is here, in the muddy room -- every night of my life for the past seventeen years. Sleepovers, vacations, trips, if I were going somewhere, Winnie came with me. That’s it! I’m not lost. I’m not dead. If Winnie is here, I must be asleep. Of course. I must be dreaming! If I just go back to sleep, this will all go away. A bad dream. Just a bad dream. When I wake up, everything will be fine.

Words, enveloped in sound, drip down through the haze, splash into me. They seep through my brain.

“You’re OK,” the words tell me. “You’ve been in an accident. But you’re OK now. You’re going to be just fine.”

Of course, I knew that. God told me so. Or maybe it was Pooh. Somebody told me, or was it a dream?

A familiar shock of red hair, my mother’s face, hover over me. “You’re in the hospital. You’re OK now.”

My mind strains. Hospital? Am I sick? What's happened to me?

My mother’s smile stretches so tightly her face threatens to crack, to crumble. Warm, soft fingers touch my forehead, stroke my hair, just as Mom used to do when I stayed home, sick, from school. Fear wanes, lapsing into mild confusion.

“Can’t decrease… morphine… confusion… incoherent…” a deeper voice rumbles from above. The words pop through my head in bursts like gunfire.

“Everything is OK now. You’re going to be just fine, honey. Can you hear me?” I cannot force the “Yes” in my head out through my mouth.

“Don’t talk. Don’t move.” Edges of the smile push her cheeks up high, crinkling her eyes enough to hold the wet pools in them from spilling. “You need to rest so you will heal.”

So I close my eyes, drift back into the blackness.

Beginning in the middle.

Seventeen years. That's 204 months. 884 weeks. 6205 days. 148,920 hours. 8,935,200 minutes. 536,112,000 seconds that have slid by, in muted relief against the vibrance of the world around me, since the accident.

Last week, I turned 34, but today, I turn 17 again in this second life. And, just as I did shortly after my last 17th birthday, I am about to foray into unfamiliar territory once again. Life has always seemed to draw itself into patterns for me, so drawing this parallel is not uncommon.

Maybe I'm like a cicada -- every 17 years, I start a new life.