On purpose

My biggest problem is not my brain injury, despite my significant limitations.  

My biggest problem is not my other physical injuries, no matter how painful or debilitating they may be.

My biggest problem is my lack of purpose.

I used to have a purpose-filled life.  Now I don't.  Those things that were my purpose before my brain injury aren't part of my life anymore, and may never be again.  They are beyond my reach now.

If each of us has a purpose...a reason for being here...what is mine?  People tell me my purpose now is to recover, which is what I'm already doing, so yay for me, right?  But what if I don't fully recover?  What then?  Did I not fulfill my purpose?  Or wasn't that my really purpose to begin with?

From what I recall from being a purpose-driven woman living a purpose-driven life, purpose is the thing that makes you want to get up in the morning.  It's the thing that makes you excited about your day.  It's what challenges you and drives you to work harder.  And it's the thing that leaves a smile on your face as you fall asleep at night.

Recovery is not my purpose.  I know that for sure.  

I want to live a purpose-driven life again.  I want to feel like it matters if I get out of bed.  I want my existence to count for something, not just a sentimental attachment for the people who know me. This used to be as easy as breathing to me, but now seems beyond my reach.

The answers aren't out there.

The answers are in here.

Part 2 of a Multi-Part Series: What do you do all day? Productivity, or lack thereof.

I wrote Part 1 of this multi-part series back in March, starting with activities of daily living (ADLs). The truth is, there isn't much more going on besides ADLs, but that's the whole point of today's entry.

Sleeping
Let's get that out of the way before going any further.  I still need to sleep 10-12 hours a day.    It takes me quite a while to fall asleep, usually 1-3 hours depending upon how much pain I have, so the whole being-in-bed-sleeping-or-trying-to-sleep thing is very time consuming.

Doctors and hospitals and therapists
Instead of reducing the number of visits to medical providers, the number of visits continues to increase.  Brain rehab was replaced with physical therapy for a brachial plexus nerve injury (at least that's what they think it is).  Physical therapy has been replaced by additional doctor, diagnostic, and procedure visits.  Somehow, despite it all, I'm in worse pain now than I was 6 months ago.  It's so demoralizing.

Actively Avoiding SSDI
Since going on long term disability benefits through my former employer, the insurer has been pressuring me to apply for Social Security disability.  If approved, whatever SSDI pays would reduce the amount the insurer has to pay.  The insurer brought in a company  that completes and files the application for me.  I've been dodging them for months, but finally gave up the info and had an interview with them recently.  They filed the application electronically, and now the confirmation from the local Social Security office arrived in the mail for me to review and sign.  I would rather cut my own throat than complete this process, but I have to do something within the next 48 hours.  

I don't want to be disabled.  
I don't want the government sending me checks.  
I just want to be left alone to try to recover and get my life back.

Actively Avoiding ATIC
ATIC is American Transit Insurance Company, the insurance company of the taxi company that owns the cab that I was in when the accident happened.  They are excellent at burying claimants in paperwork, and seem to have no ability whatsoever to pay claims.  As far as I can tell, they haven't paid a single dime to anyone for my medical claims yet.  I tried sending them my out of pocket medical expenses for one month, and they buried me in paperwork...asking for ridiculous stuff like a letter from my physician justifying every prescription.  They send me letters almost weekly asking for crazy stuff, like documentation of my lost wages from my employer, despite knowing I have no employer anymore.   So I just pile up the letters on my desk.  At some point in the near future, when all the medical providers start coming after me, I'll have to find an attorney and file a civil suit against them.  When I think about my lost wages alone (over $100K/year), it makes me realize I have to do something eventually.  Just not today.

Making plans...canceling plans
Most days you can find me sitting quietly, usually reading, trying not to move much.  It's the best defense I have against the pain.  Medication hasn't helped, neither has physical therapy, TENS, or cervical nerve block injection.  I really do want to get out and do things, see people, go places...but I have to weigh those opportunities against the consequences of doing them.  Going out to dinner might mean 3 days of severe pain that prevents me from sleeping or doing other things I need to do. A weekend trip could mean weeks of severe unrelenting pain and immobility.  If I make plans to do something, I know there's a good chance I will need to cancel those plans.  

So there you have it.  If it's between 11:00 pm and 11:00 am, chances are I'm either asleep or trying to sleep.  The rest of the time, I'm waging a silent war against pain and losing each battle so far. I'm reading a lot (no fiction) and keeping my brain active and challenged.  I'm using my time to prioritize the things that will enable me to be recovered, pain-free, and independent.  And right or wrong, I'm actively avoiding things that suck the remaining life out of me.

It's only courage if it doesn't end in disaster

In my last post, I admitted I was scared about planning to go with Jon to his race (Keys100).  As the time grew closer, I was less fearful, but still nowhere near confident that I could do the things I needed to do.  

The first part of the trip was better than I expected.  Check-in at the airport was smooth, and we spent the pre-flight time in the club lounge where it was quiet.  Take-off was fine, but I had some seizure aura activity on descent...thankfully, no seizures.  It took longer to get out of the airport and to our hotel than anticipated, but I held myself together and took it easy the next day.

Things got rough after that.  Neither of us got much sleep the night before the race, and we were up and out the door by 5:00 am.  Jon's group started at 6:30 am, and I went back to get a couple of hours of sleep before having to load out and start the drive.  It didn't help much.  I required 10-12 hours of sleep to do what I needed to do, but I only had about 6...in bits and pieces.

My job...the thing I was scared to death of doing...was making the 100 mile drive from Key Largo to Key West by myself.  The furthest I had ever driven since the brain injury was 25 miles, and that was with a 1 hour break at the halfway point.  My plan was to drive the first 50 miles to Marathon Key to meet Jon at around 5:30 pm, then drive the second 50 miles to Key West to check into the hotel.  I had time to take breaks along the way if I needed to, as long as I didn't leave too late.  I sat at Starbucks in Key Largo drinking iced lattes until I felt ready, then headed toward Marathon.

I can't recall being so nervous about driving since I was 16.  I concentrated solely on the road and not killing any runners.

From Jon's calculations and logins, I knew approximately where he was on the road.  I lifted my eyes just high enough to find his lime green compression leg sleeves at mile 31.6, and pulled off the road for a quick check in with him.  He cooled off for a bit in the air conditioned van, then was on his way again.  That was my only break on the way to Marathon...I just wanted to get there as quickly as possible so I could sleep until he arrived.  What I didn't account for was how chaotic and noisy it would be there.  I rested a bit, but couldn't sleep at all.

Jon arrived in Marathon later than expected and uncommunicative.  His core body temperature was way too high, his kidneys were no longer producing urine despite taking in enormous amounts of fluid, and he was in danger of heat stroke.  After 2 hours of resting, his temp was even higher, so he made the difficult decision to withdraw from the race.  I took him to the ER for iv fluids and cooling down.  We left a few hours later.

Now it was dark.  I was overtired, barely verbal, hungry, and thirsty.  And I had to drive 50 miles to Key West...with my husband overheated and shivering in the seat next to me.  I kept my eyes on the road, my teeth clenched, and a firm grip on the wheel, as if this combination of things could somehow will my brain into obedience.  I told Jon to tell me whenever the speed limit changed.  If I got pulled over, I'd lose whatever last bit of resilience I had left and melt into a puddle of mess on the side of the road.

I don't really know how to describe the experience of those last 50 miles.  Mostly it was fear of what my brain might do...and the fear of what my brain actually was doing: visual and auditory hallucinations, seizure auras (but no seizures), and losing awareness of my legs and feet.  I begged the universe to guide me, to protect the runners from me, to keep me on the road and out of the ocean, to help me know if what I see is real, to keep the seizures away, to keep me conscious.  I made no bargains, knowing I had nothing to offer in return except gratitude.

We made it safely to Key West.

I've been called brave and courageous and amazing for doing all that.  But none of that is true.  My plan was short-sighted at best...reckless and dangerous if I'm really being honest.  My plan presumed that I could do things on my own that I had not been able to do since the brain injury.  I had no backup, no support, and insufficient cognitive ability to come up with an alternative plan.  

I wasn't prepared to do what I intended to do, and my plan fell apart almost immediately.  The first mistake was starting the drive without enough sleep, thinking I could nap later.  When Jon arrived in Marathon needing urgent attention, I used all my resources to take care of him and neglected my own needs.  I posted updates on Facebook so people would know what was going on, but my phone was still blowing up with calls and texts that I didn't have the energy (or even the verbal ability) to answer.  Everyone was concerned about Jon, but none of those calls were offers of help.

The biggest mistake was driving to Key West that night.  Jon was doing better, but was still overheated and in no shape to drive.  I was a mess...a danger to myself and others...and had no business being behind the wheel.  There were other options besides either of us driving that night.  

I'm ashamed that I didn't think I could ask for them.

I've always thought of myself as a kind, caring person.  But that night, I put the lives of countless people at risk, including my own and my husband's.  That is not the action of a kind person.  But that's what I did.  

And I'm sorry.

A Place of No

I hate the calendar, but not for the reasons you think.

It's been 286 days since the accident, which means 286 days of non-stop migraine headaches.  But that's not the reason.

I lost my job, my career, on Day 192.  But that's not the reason.

It's all the unseen losses in between.

It's all the summer weekend plans last year.  The beaches I never got to see, the friends I never got to visit, the bridal shower long anticipated but unattended.  The books unread on the deck, enjoying the woods that surround our home.

It's the fall foliage I saw only through a peak out the window or from behind sunglasses and a visor. The family birthdays uncelebrated.  Annual events eagerly awaited but sadly missed.  The Thanksgiving meal I couldn't prepare and could barely eat.  

And in their place, isolation and unremitting pain interrupted only by rehab and medical appointments.

It's the joy of the holidays muted to silence.  The Christmas tree that I couldn't look at without searing pain.  The traditions on hold until next year in the hopes that it'll be different then. No visits to family or friends this time.  Just quiet.

It's the eerie silence of winter.  The February getaway to Sedona given away instead.  The speaking engagement in Orlando in March, booked before the accident, finally cancelled instead of pending. And the one that broke my heart: missing my niece's baby shower.  I tried so hard to make that happen, but severe migraines, seizures, and hallucinations made that one impossible.  

And now it's spring.  It's been about six weeks since I've been to brain rehab while I try to get the seizures and hallucinations under control, although I'll be going back soon.  Instead, I've been going to physical therapy to work on the neck, head, and upper body damage caused by the force of the accident (hint: a lot).  I've already had to say no to an invitation that under normal circumstances, we might have tried to make work despite the inconvenient timing and distance.  That was not well received and likely ruined a friendship.

In about six weeks from now, I'll be going with Jon to FL for his 100 mile race (www.keys100.com). It scares me just to say that.  Every time I plan something, I wind up having to cancel it because I'm not ready yet...and I'm afraid that this will be another one of those things.  

Really. Really. Afraid.

I hate the calendar because it means having to say no to my life as I knew it.

Part 1 of a Multi-Part Series: What do you do all day? Activities of Daily Living

There's so much to address in the topic of what I do all day, but I'm starting with the basics: Activities of Daily Living, or ADLs.  This is the stuff of daily life...eating, sleeping, self care...and the minimal stuff it takes to keep going, like paying bills, making and attending medical appointments, basic housework, and pet care.  

This is the stuff that I used to breeze through with effortless efficiency.  

Self Care
Anyone who has ever lived with me, vacationed with me, or even spent a night with me knows that it takes me 20 minutes to get ready in the morning.  Start to finish, showered, dressed, hair and makeup done, 20 minutes.  

That was before the brain injury.

Now it takes an hour.  And I don't wear makeup or shoes unless I'm leaving the house.  Which I hardly ever do.  I don't know why it takes an hour to do the same things I was doing before, but it does.  There is some added time for dropping things and picking them up, but that's less than 5 minutes total.  

Cooking and Eating
Cooking and eating were activities that I could do with ease and surprising speed.  I could walk in the door and have a healthy, home cooked from scratch, meal on the table in 30 minutes.  I could (if necessary) eat a meal in 10 minutes or less.

Cooking is really difficult for me now.  It requires following a series of steps that frequently overlap...which is where I get messed up.  I don't have the ability to multitask anymore.  On days when my symptoms are bad, I don't have the ability to cook at all beyond boiling water in the kettle or heating something in the microwave.  

Eating is also difficult, and it can take an hour or longer to eat a meal.  The nausea is gone, thankfully.  My sense of taste is starting to come back, but it's still impaired. Food is just fuel to me, it doesn't taste all that good, and I'm usually not hungry.   Most of the time I spill or drop some portion of it on myself, despite being really careful.  

I have to be really careful about eating.  If I'm alone, I often forget to eat.  If I forget to eat, my blood sugar plummets and triggers seizures.  

Sleeping
My life-long dysfunctional relationship with sleep continues.  I never got enough sleep before the brain injury, and that's still the case...although now the requirements for sleep and the consequences for not getting enough sleep are both higher.  I need 10-12 hours of sleep nightly to repair the damage to my brain.  That happens about once or twice a week.  When it does, I know I can take care of higher level tasks (bill paying, etc.) or maybe go out to a store or restaurant the next day.  Or I can stay in and work on the backlog of other tasks like housework or paperwork and phone calls.

Most nights I don't get enough sleep, sometimes as little as 2-3 hours.  Despite taking enough medications to knock out a healthy rhino, a combination of pain and and irregular brain activity (seizures, hallucinations, other abnormalities still to be discovered) keep me awake.  Those nights ruin the next day for me, making it nearly impossible to do more than the most basic activities.  Any plans I may have had are out the window.  These are the days I cannot speak, when I stumble and fall, when the headaches the are worst, and I wonder when I'll catch a break.

The other stuff:  Bill paying, housework, appointments, paperwork, phone calls, pet care
This is all the stuff that has to get done, no matter how I feel, but different jobs can be done with different levels of brain power.  Knowing that I need a "good brain day" to pay bills, do paperwork, or make phone calls, I give myself a window of 4-5 days to get these jobs done.  The first "good brain day" in that window is when I do them.  Housework doesn't need a "good brain day", but it does need a "good pain day", so I pick away at it when my pain levels are reasonable.  It may take me 3 days to get the bathrooms clean, but I do it at my own pace.  

Pet care is a different story.  It doesn't matter how I feel or what's going on...my boys come first.They depend on me to take care of them.

The Waiting is the Hardest Part

The most persistent symptom of my brain injury is migraine headaches.  I’ve had the same headache, of varying intensity, for 231 days.  A couple of weeks ago, my neurologist changed my headache meds because they weren’t working well enough.  That meant discontinuing the old meds, waiting a few days, and then starting the new meds.   The new meds have to be increased slowly over four weeks until I reach the therapeutic dose.  That's 4+ weeks without adequate headache management.  The way my brain responds to this transition is that there are no limits on how bad a headache can get, or what else it can throw at me...seizures, hallucinations, whatever!  All bets are off, baby.

Most people are familiar with a 0-to-10 pain scale, with 0 being no pain, and 10 being the worst pain you can imagine.  On my prior meds, my headache pain was usually a 2-3, with occasional spikes to 4, 5, or 6.  Anything above 5 puts my brain in protective mode, not allowing for rehab or my home exercises that are meant to challenge and repair my injured brain.  Headache pain above a 5 also wrecks my speech, impairs reading comprehension and problems solving, and interferes with sleep.  It's a nasty cycle.  Not enough sleep = worse headaches, speech impairment, poor reading comprehension and problem solving.  See how much fun that is?

The 0-to-10 pain scale isn’t descriptive enough for me anymore.  It lacks dimension and detail.  Sure, I could say that for the last 3 weeks my headaches are a 5-6, with occasional spikes to 7 or 8, but what does that really mean?  I’m already in the non-functioning zone. 

Yesterday’s headache was hatchet buried in my skull, with the occasional fist to the face.

My current headache is head caught between two boulders with a pencil shoved in my left ear. 

I considered an historical pain scale, but quickly realized that was too subjective.

Remember that time I had meningitis and couldn’t get off the floor and cried all the way to the hospital because my head hurt so much and then I passed out from pain during the CT scan?  Well, that was a 9…because there might be something worse and I’d need that for a 10. 

So if that was a 9, then today is a solid 6.

That kind of pain scale doesn’t help anyone.  Well, it kinda helps me because I know I can survive that kind of pain.

It also helps me pass the time while I wait.  I have 7 more days until I reach the full dose.

Trivia

I've had a headache for 200 consecutive days without a break.  

The color red really bothers me.  It's physically uncomfortable.
  
I wear dark sunglasses whenever I'm in a car, especially at night.

The sound of a pop-top can opening feels like a punch in the face.

The ringing in my ears is at a frequency of just over 10,000Hz...E-flat on the 9th octave. Sometimes there's a second pitch that's a fifth below in the key of E-flat major, which is B-flat, I think.  I've had this noise since 1986, but it's a lot louder now.

I've had 51 sessions of speech, occupational, and physical therapy, not counting today.