Notes from a Brain Injury Life

I used to keep a journal. The notebooks I filled have been sitting on a shelf in the closet for the past 12 years waiting to be revisited. The other day I picked one up. Skimming through endless days, pages, dreams—who has the patience for this? Then I found one that was so crazy I couldn’t stop reading even though it was long. Very long (11 hand-written pages) about one very brain-injured day. Impulsive, repetitive, and absurd like a slapstick comedy gone awry. Maybe you’ve had days like this.

8/24/2006 from my journal (verbatim):

Thursday pgs-1

THURS. Alarm was set for 8:15, but I woke up earlier to pee. Then back to sleep until the alarm. So hard to get up to get my body or mind in gear. 9:20 PT w/Jason so I had to. Showered, had breakfast (fast – I was late b/c I didn’t get up when alarm rang) + decided to take Provigil. That helped, but basically I am so tired, mentally + physically, that although it helped me get through PT, I still didn’t feel energetic.

At least it’s not a stimulant so no jitters of “fake” energy. It helps my mind feel more rested +  mo  my body able to get up + move around. Very very helpful when needed but it would be healthier to rest + not over extend myself.

Because I function so well, everyone (today, Gur too) says the working is good therapy. I don’t know. Not if it makes me épuisée – hollow from fatigue.

So… first Jason. Then after to Personal Injury lawyer on Court St, Brooklyn. I’m cognizant of fact I have to make things as easy as possible for myself (that does NOT mean taxis – I won’t go that far) so I take train elevators when they exist #4 fr. Union Sq. to lawyer’s office (Morris Sinensky – Richard Niemark law office). He emailed b/c having read Yehuda’s report he realized there might be a case  againts  against the Jan ’05 driver. I emailed all documents I had so I went to sign papers (HIPAA + right to act as my agent or whatever).  Real  Ready to leave + there’s an elevator to 2,3 train which will take me right to the office. I head towards to elevator + think maybe I’ll buy a sandwich instead of getting to the office + having to go out right away. But it’s early + then as I get near corner w/elevator I see there’s a farmer’s market. I keep thinking I need to take a mental break since I’ve already done 2 things this a.m. Such a pleasure to find a small farmer’s mkt that I figure it will be a “rest” even though I’m standing & walking. Of course this is the local season for everything wonderful. I buy raspberries (very ripe so they sell them 2 for the price of one – I get 2 boxes). Then I taste tomatoes – and the green heirlooms were heavenly. I pick a bunch + then somewhere else taste peaches + nectarines. Peaches aren’t heavenly anymore (were earlier in season) but nectarines have suddenly burst full of sugar. I  by  buy them too. Then 1 ear of corn (the place that has white), a piece of “orange crunch” pound cake (eating it right now + it’s wonderful.

At one stand I tasted cherry tomatoes which were sweet + yummy so I bought a box. When I said how sweet the sales woman said had I tasted the husked tomatoes? I’d seen but never tasted so she took the husk off one to try. Heaven – desert in a tomato, so of course I bought that too. Now I’m juggling bags, trying to to crush anything, which hand, pocketbook, cane, umbrella (supposed to storm today- took it instead of sunglasses but it’s sunny now + I need them). I get into elevator + subway comes. 2 minutes into ride I realize I left the tomatoes – the green ones – probably when I was paying them. I get confused b/c it’s so much trouble the physical manoevers (sp?) that I can’t don’t think straight. Not a surprise. Get off at 34th St +buy a sandwich. Up to the office + work. Stop for lunch / ½  sandwich + lots of fruit). during lunch I spend the time on the phone w/ doctor office changing apt (Gupta – hand orthop) +  maj  Aetna re: appeals Dr. Finger, Dr Nadkarni + others.

Then back to work.  As  Dr. Bram at 6:30 so I decide to make life simpler (I keep trying, but not very  suciees  successful.) 5:45 I leave, enough time to take the bus across 34th to 5th – then down 5th to end up  on  at Dr. Bram’s don doorstep. GOOD intentions but…

Leave office (NW CORN 34th + 7th) cross 7th to get bus across 34th. Everything I bought + have is precariously balanced between pocketbook (umbrella + corn) left hand (fruit bruisable) and right w/cane )  (tomatoes in plastic boxes, ½ sand from lunch). When I get to the other corner I realize I can’t see the bus stop. Then I see a bus going East + not  stoping  stopping. I see, contrary to normal busses stopping after avenue crossing, here it stops on the Penn Station side, before  I  7th Ave. so I cross to the south side of 34th + try to figure this out. I want to make it easy for myself. Do I cross 7th westward towards bus stop + wait for one (none visibly coming) + hope there’s a fifth ave one which can be dodgy, OR walk to 6th Ave to get a subway (7th Ave train will take me to 14th/12th + 7th ave – Dr. on 5th + 10th St  so that seems far). meanwhile I’m trying to keep umbrella handy b/c It is raining a little, juggle the bags, keep  stopin  stopping to sort packages out + eventually decide to walk to 6th. Moving slowly now. I get to 6th where the subway entrance is. I knew the F+V are there (letting me out at 14th + 6th or W. 4th St which is closer to Dr.) but looked at what  al  else  there – the NRQW. R train stops at 8th St. and  4th Av  Bway. That seemed closer or as close as w. 4th. OR I could  tal  cross 6th/Bway to try to find bus to continue original idea. Crossing seemed too wide + scary – two Aves together in one, so I went into subway. F + V had elevator but I couldn’t see it,   d  and downtown QNRW was right there. I went down short stairs. Sort of stuck at bottom b/c passage btwn stairs + tracks was narrow + I don’t trust my balance + people were there. So I stay w/all the people crowded between stairs + a wall. R train came. Luckily there was a seat but even sitting down w/pkgs was hard – in the morning + now. Where to put each thing. Pocketbook on shoulder, keep raspberries upright, don’t let nectarines bang + keep everything else from spilling over onto the person next to me – and don’t jam my bag into their body. Plus the umbrella – I may need it so it has to be on top.

[at top of page]
(talk about work – how long things take, typing creative thinking, phone w/Pat E… saying I sound frustrated – fed up)

Get off at 8th St. but it’s only 6:00 + I don’t have to be at Dr. Bram until 6:30. So on a day I’m determined to do any shortcuts to conserve energy not only don’t I take a cab from the office to Dr. Bram (why? didn’t even occur to me!) but in addition I decide that since I have time, I’ll pick up a large bottle of Johnny Walker Black ($20 less at Warehouse wines on Bway just south of 8th St than at stores close to home). So juggling bags etc. I go in. Scotches are straight ahead when you walk in. I go around w/ pocketbook on shoulder jutting out + nearly knocking over bottles behind me. I realized when I went to get bottle (which comes in a box) that I had too much in my hands to do it. Once  I  again  t  I try putting things down, picking them up in another order, putting uncrushables in my pocketbook. [UNDERSTAND: small motor + coordination right now is bad. So each time I try  adg  adjust bags + cane I am clumsy, it’s hard work + slow. I try multiple times to get a bag’s handles in my hand + get confused abt what I’m trying to do.] AND I’m exhausted – getting lightheaded if I look the wrong way, tunnel vision more + more.

So – I decide to get a cart (duh) even that’s an effort – some guy has his stuff on top of the carts + talking on the phone won’t move aside so I don’t have much room in the aisle. Get bags in the cart but can’t put pocketbook in b/c it’s heavy + will crush fruit.

[in margin] folded cane in cart too

So I keep it on my shoulder (heavy now w/corn + umbrella + other stuff) nearly knocking over bottles. Back to the Johnny Walker. Lean over + hold a box w/ both hands. Slide off shelf + …   it dro  I drop it. My hands just  cands  can’t hold it. One on each side of vertical box. Before putting in the cart I think I should open it to see if the bottle  brook  broke (no sound of breaking, no scotch leaking out.) I  trie  try + try to get top  o  flap of box to open but my hands aren’t working well. I put my bag on the floor + put box in my cart. Finally open it but can’t see so I try to  bull  pull bottle out. Can’t do it so I figure I’ll  b  put it back + take another. There’s an employee standing next  to me so I’m self conscious. I leave the one in my cart. Put my pocketbook down, get another this time one hand on bottom one on side or top + carefully lifting to cart. Then, the hell w/the guy, I put the other dropped one back on shelf. My pocketbook goes on top of cart balancing so it   doin  doesn’t crush fruit . To check out. Put bottle on counter + start the slow process of finding wallet, bag on shoulder so it doesn’t crush anything, bags of fruit still in cart, pay + sign slip ( barlli  barely + unrecognizable sig.) Pick up bags from cart, arranging + rearranging so the  ga  rasPberries are on the outside + nectarines in left hand so they don’t bruise by being in pocketbook or banging against cane. Then I try to pick up bottle. Needless to say another long slow process of trying the bag different ways + the cane backwards then forward so the bottle doesn’t knock cane or push it in front of me where it will trip me. ½ block from store I realize it’s not working. Meanwhile rain is starting again. New solution by sidewalk  on   nexto  next to a building so I can stop, lean,  put everything down + figure this all out again. Put the scotch in my pocketbook. Doesn’t really fit but it will hold (hope the straps don’t break – then I’ll just sit down in the middle of the sidewalk + cry) Slowly the other bags are rearranged + I’m ready to go. I walk slowly – don’t give a shit abt. the time. I can not sense time when I’m exhausted.  I.ts  It’s all in slow motion + I can’t tell if it’s 5 mins b/c it feels like an hour. So I don’t try. If I’m late so what.

Pick everything up + walk slowly to 10th + 5th. Rain starting come down more + more but no way I will stop again or attempt to put up an umbrella.

This is surreal. Every decision is slow + hard. Neither brain nor body working properly. I know I’m pushing too hard but don’t know how to change + what. Writing this is taking forever, my hand is tight + tired + can barely hold pen but it’s important to put this down or… or what? I’ll forget. Somehow being able to recreate this time feels important. Esp when I can see how un-well I can be even as I’m thinking I’m too “healed” for many of these therapies.

This is what I spent therapy describing. I don’t think I could have not taken this job + once I did, it’s a commitment to keep + do my best at. Also, in 2wks I’ll only be there 1 day/week or less (Dr or therapist appts may have to be Friday) so I need to give what I can now.

Made big salad for dinner, read newspaper + the rest of the evening has been this notebook. JUST HAVE TO STOP. This is torture. I can’t write everything in my head. too hard to keep up w/thoughts + hand  tins  tires first.

At some point in the evening K. called. She went to a new doctor & she/they love the doctor. Same difference as I had btwn Weinberg + Nadkarni. Dr. said basically she’s OK. Thyroid needs watching + her drinking made everything bad—hormone levels too. She’s been sober for a month. She sounded good,  the   nas  then asked abt. me. I deflected comment but she came back to it. Somehow I got into story written above + abt how stupid I was to  by  buy stuff at farmers mkt + even when that was hard to carry went to buy the scotch. Went on + on + finally when I neared the end she said “stop”. I don’t know how long I talked non stop. Then she just made me shut up + stayed on the phone making me get ready for bed step by step, even staying on while I went to brush my teeth. Then when I had to put back the desk phone to pick up the bedroom phone so when we finished I could just hang up w/out moving + not have the phone lose all it’s charge. Again, ½ valium on top of Xanax.

She asked abt tomorrow + when I told her O.T, then work, then Erik/osteopath. She said “OK, do one thing.  Au  After OT take a break, sit down + don’t go right to work, promise?” Good idea. I did it.


[Did I do it? The next day’s entry doesn’t say anything about taking a breakjust OT and my cognitive problems]
+ my brain gets tired. That’s what Yehuda’s program* will help me fix. I need it.


Postscript:
It was profoundly unsettling to revisit my journal from so long ago. How could I have watched this downward spiral, my unraveling, knowing I was doing it to myself but stuck – powerless to change course? And why was I compelled to record it in such relentlessly repetitive detail? Was it for the future “me”?

– Laurie


*I was about to start holistic neuropsychological rehabilitation at Rusk
in Yehuda Ben-Yishay’s Brain Injury Day Treatment Program.

 

One thought on “Notes from a Brain Injury Life

  1. Angela Leigh Tucker October 26, 2018 / 7:13 am

    Wow! I’d consider this a gift from your injured self to your new self… Thank you for sharing. You’ve come a long way baby!

    Liked by 1 person

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