Happy New Year

Happy New Year to all!
Many who read this blog have had an unfortunate medical surprise last year. We’re all hoping for this year to be better. In writing my resolutions, I noticed they could be anyone’s. Many of them are specifically written in response to stroke symptoms but standing alone, they look pretty normal. Here they are:
When I bike home from work, I will gradually increase my distance by taking longer and longer detours.
When I am tempted to deviate from the schedule, I will choose the schedule over my impulse.
I will say no to more obligations out in the world and at home and yes to assistance.
When I am sitting idle I will knit as long as my hand will let me.
When I am tempted to yell, I will take a time out and do something I enjoy.

What are your resolutions this year?

Feed the Meter

I’m struggling with how to express my thoughts.

I wish I was keeping up with my blog.  I wish I was keeping up with relatives and friends.  I wish I could adequately thank the Stroke Center for all they’ve done for me.  I wish I didn’t always feel so far behind.

Every day I get 100 tokens.  It takes 1 token an hour to survive (asleep in bed).  It takes about 25 tokens an hour to go to church or physical therapy or go to a potluck or drive a car (or ride a bus or bike or even ride in a car…moving vehicles are not my thing) .  It takes about 20 tokens an hour to go to work.  It takes about 10 tokens an hour to shower or brush my hair or do other self-care or to do low-grade stuff with my kids (facilitate them doing artwork, watch while they play, put them to bed, read them a story).  It takes 5 tokens an hour to eat.  It takes 2 tokens an hour to lie on the couch doing nothing.

When I did PT, I would use 50-75 tokens just to do PT.  That would leave enough tokens for the rest of the day to use 1-2 an hour.  When I go to work, I use 40-60 tokens just to go to work, again leaving only 2-3 an hour for the rest of the day.

When I first had my stroke, I did nothing except PT, work, and lie on the couch (expending a few extra tokens to blog while lying on the couch).  That’s all I had tokens for.  That was fine for awhile.  But now I’m looking at my life for the long haul.  And I’m sick and tired of having to pay for everything I do.  I used to live my life freely, certainly facing the consequences if I had too much on my plate, but generally being able to use my time as I wanted.  Now there’s a meter always running, demanding that I pay up.  expired-meter

What happens if I don’t pay?  What happens if I run out of tokens?  My arm floats away from me; I fall; I can’t sleep and lie awake spinning uncontrollably; I cling to the bed to try to try to gain some stability; I feel through-the-roof anxiety; I feel a random but intense desire to die.  So I’ve learned.  Save enough to pay the meter.  There is no free parking.

There was a lot of flooding here in Colorado recently…some people had almost no warning to grab their most precious possessions (perhaps just a pet or a child) and get out.

What would you grab?

With the stroke, I at least have the privilege of changing my mind about what to grab.  Those first few months, I grabbed my recovery first and my job second. People from different facets of my life have been contacting me wondering when I’m coming back or why I’m not around or not blogging.  It comes down to what I would grab in a fire or a flood.  Like most moms, I’d grab my kids.  If I lost every item I owned but still had my family, I’d be okay.  But I’ve had to jettison many people and activities that I value in order to hang on to the most important.

I’m trying to be sensible…I realize that homelessness is not a good option so I’m still working just enough to not quite squeak by financially (we’re making up the difference by selling stuff on Craigslist).  Unlike so many people who tell me they are “barely squeaking by,” I really mean it.  We’re comfortably below the federal poverty level.  Lucky us.

I typed this while nursing my daughter.  I’m about to carry her downstairs to sleep.  By the time I come back up, my son will likely be home from helping Daddy dismantle a swing set someone is handing down to us.  We’ll eat supper together, and spend a little time just the three of us before bed.  I don’t know how long it will take to recover from my strokes, but I do know that these early years with my children can never be replaced.  So if you ever wonder where I am, assume I’m cuddling.

Feeling Normal

I meant to write about Stroke Camp first and this experience at Stroke Camp second, but you’re getting it out of order. It took me over a week to recover from camp and just as I was feeling myself again, we all got sick. So here we are weeks out without any posts. Maybe I’ll write my next one on how long it takes to bounce back from illnesses or vacations…

Ever since my stroke, I have lived in a continual carnival.

Because my stroke is cerebellar, I am constantly playing games of coordination, speed, dexterity to just get through normal activities. Reaching for something and picking it up is as challenging as one of those arcade games with the arm that you use to pick up a stuffed animal and drop it down a chute.

As I complete each task, I walk to the next along rigged paths that sway, rock, and jolt unexpectedly.  The only place to sit down to rest is on the tilt-a-whirl.  To eat lunch, I sit at a table that jiggles constantly.  As my food bounces around, I have to reach out to catch each french fry…the fries jiggle around in the basket that is jiggling around its area on the table as my arm is being jiggled by the bouncing and shifting of my seat.  

One of the rides, the “Bike Ride,” involves riding on something like the spinning teacups (only appropriately themed) and then being given a bike.  I am put on a path that is constantly moving; it wiggles and swoops, suddenly jolts left or right or up or down.  It is positioned in a tunnel that is constantly rotating a few days clockwise or counterclockwise in little jerks.  Now ride!  At the end of an exhausting day at the carnival, instead of going home to my quiet, still bed, I lie down on the tilt-a-whirl and try to sleep.

In addition to the above, my brain is constantly “pinging” my right arm to try to figure out where it is in space.  My brain seems generally less bothered by right leg and let’s it just exist in a sort of fuzzy space.

When I am doing a particularly enjoyable or interesting activity, I forget how dizzy I feel…but it is still a huge effort.  At Stoke Camp, I had the opportunity to try something both enjoyable and EASY. I rode a recumbent trike during a demo from Angle Tech.  Kelvin, from Angle Tech, had a black metal box like something out of a James Bond movie.  He opened it and pulled out all sorts of nifty pieces of equipment that allowed people to velcro their paralyzed hand to the handlebar, brace a paralyzed calf, or shorten the distance of pedaling for someone with limited range of motion.  I watched as other stroke survivors limped over to take their turn, set aside canes, were helped out of wheelchairs, hooked paralyzed limbs into various nifty gadgets, and then took off, whizzing, with huge grins on their faces.  I wanted so badly to get my turn that I was almost in tears (not usual for me).  I knew I had already been up way too long and needed to lie down really soon and my daughter was overdue for a nap.  I was dizzy and queasy and couldn’t figure out any logical order to the milling group.  I started asking for help.  A volunteer and a caregiver helped me on to one of the recumbent trikes that was adjusted only a little too tall for me.  The guy adjusting the bikes was busy taking someone else for a spin.  

I started pedaling and realized something amazing: this was easy.  Everything I do, all day long, is a huge difficult effort.  But riding the trike was a heady combination of being a fun, interesting distraction from the spinny feeling and simultaneously being easy.  I had reached a point of fatigue that I know from experience has me poking myself in the face with a fork trying to eat.  And here I was, nearly effortlessly moving through space.  My right arm and leg guided by my left arm and leg, and my wheels solidly attached to the ground with no danger of tipping.  (Upright trikes are very unstable, by the way, and not advisable for stroke survivors!)  The kind woman helping me was trying to get me to stop and listen to directions but all I wanted was to keep going and feel that incredible sensation again.  I felt normal.  I felt like me.

I even tried going off the edge of the road to see what would happen.  Nothing.  It was fabulous.

Biking is extra important in our family because we bike everywhere, not just for pleasure or exercise, but the grocery store, Costco, the hardware store, church.  Not being able to bike anywhere has been a huge change in my life.  My family can still whizz around.  Because of our handy location near the bike trails, we can actually get to Costco or Target (2.5 miles away) in the same amount of time, and a lot less trouble, by bike than in a car.  But even now that I’m back on my bike, I can only go a few effortful blocks.  If it’s anything like walking, I will gradually increase my distance. Even in the weeks since Camp, I’ve made huge strides towards “normal” biking (I weave less, for one!)

After my glorious loop on the recumbent trike, I gimped slowly, clumsily back to my room with hot eyes and tears welling up.  I was back in the continual amusement park ride.  But I’d had a taste of normal.

Here’s a video of the trike I tried.  As far as I can tell, almost any stroke survivor can ride one of these.  I wasn’t exaggerating when I said people were being helped out of wheelchairs to take off on three wheels.  This could be us:

Acknowledge the Nail!

First, watch this video:

So my first thought was of all the really caring, understanding people who seem to ignore the “nail” in my head. Sometimes I have conversations like this:

Me: “I don’t think I can get through everything I’m supposed to do today/tomorrow/this week/etc.”
Caring Person: “You’re having a really hard time, aren’t you?”
Me: “Uh, yeah, and I really don’t think I can do this.”
Caring Person: “I’m so sorry. It sounds like you feel really overwhelmed.”
Me: “Yeah, actually, it’s not just a feeling. I mean I literally can’t do this.”
Caring Person: “Hmmmm. That must be really awful.”

My first suggestion: Acknowledge the nail!

More than an Interruption

I’ve heard several people describe my strokes as an “interruption” in my life.  At first I kind of liked how that sounded…as if I was called away for a moment and would be returning to the regularly scheduled program soon.  I’m realizing now that the strokes were an interruption to my life in the same way a severe storm is an interruption to a garden party. Some people will just call off the party and spend the day doing something different.  Sometimes the hostess may lead her guests inside, move the refreshment table, turn on music, and continue with the party…but it is not the same kind of party she was intending to have.  It may actually turn out to be the best party she’s ever hosted.  But she experienced more than an interruption.

Which route you take depends on the severity of the storm, the availability of other options for the party, and your own preference.

I have heard stories of stroke survivors who spent a few months recovering and then “just went on with life.”  I have never heard that from someone who was close to the survivor.  Usually it’s a friend (but not a close one) or a coworker or a physician.  I am betting that there are people saying that about me.

But as someone whose garden party was hit by a hurricane, please know that this was more than an “interruption.”  I had good options available to me and stroke symptoms that do not preclude my ability to carry on with a variation on my previous life.  I think this party will be much better in so many ways, but right now we’re still trying to figure out how much we were able to salvage from the storm and what we’re going to have to improvise.

What about you?  Did you call off the party and do something different?  Did you move the party inside?  Or was your medical event merely an interruption?

Risk of Divorce in the Face of Serious Medical Illness

There was an interesting study published in the journal Cancer a few years ago.  The title is fairly pointed in its description of the situation: “Gender disparity in the rate of partner abandonment in patients with serious medical illness.”

In short, the authors found that while the overall separation or divorce rate was the same as in the general population, married women who had been given a diagnosis of brain cancer or multiple sclerosis were SEVEN TIMES more likely to become separated or divorced than married men given a similar diagnosis.  The actual numbers: among the 515 patients, 20.8% of the women and only 2.9% of men experienced separation or divorce (compared with 11% on average and over the general population).

I was blown away (and a little scared) by these numbers.  In looking at the full text article, I see that the authors specifically looked at MS and neurological cancers because they are “rarely curable and are usually accompanied by nervous system symptoms that impair cognitive as well as physical function.”  I’m incredibly grateful I had a stroke rather than something progressive; at the same time, the same comments could be made of the effects of stroke for many people so it’s reasonable to consider the parallels.  I have to say, those statistics are pretty similar to what I’ve seen among stroke survivors.

The authors of the study have various theories about the disparity…that perhaps men aren’t as good at care-taking, and that women who were considering divorcing their husbands decide not to after a serious diagnosis.  I have another theory they didn’t mention: that rather than being “abandoned,” women are actively ending their relationships if the men in their lives are unable or unwilling to make the changes necessary after the diagnosis.  I guess it’s the flip-side of men struggling with the care-taking role.  While men struggle (or stop struggling and just don’t bother), women realize there is a way out.

My husband and I are determined to stay married and are much closer and better at working things out since my stroke than before.  But we still have our situations.  If he refused to discuss the issues and make some tough changes, I could imagine our relationship deteriorating very quickly.

For example, a couple weeks ago I was supposed to take the kids on an easy little outing while he got some projects done at home.  Part way through the last minute preparations to leave, I realized I couldn’t manage alone and started calling to him for help.  When I finally found him, he was sitting on the front porch waiting to say goodbye to us.  Not a particularly dreadful thing to do, but I was flabbergasted and said so.  He looked honestly surprised and said that I should have told him what needed to happen to leave the house.  I looked honestly surprised in return and said that, since he stays home with the kids and cares for them most of the time, I had assumed that he understood that my son would need to use the potty, my daughter would need a fresh diaper, and that we’d need to pack snacks and water bottles.  I had expected that he would take care of these things without being asked, just like most moms would do before sending their husbands out with the kids for a couple hours so they could get something done.

And this is where things could get ugly or go well.  A lot of husbands would have completely lost their temper when I said that and it would become a huge fight (and honestly would have in my household not that long ago).  My husband (bless him!) has learned over the past few months to talk about things instead of escalating into fireworks.

We have talked about this sort of situation several times since then.  He has admitted that he’s having to learn a different way of thinking (“like a mom instead of a dad”) and has really worked to think ahead about everyone’s needs…a big job!  We’re each still crabby and impatient at times, but I hugely appreciate all his efforts in learning to be a caretaker.  It’s not an easy job.  If he had resisted making all the changes we needed him to, I’m not sure what I would have done.  Between my belief in the sanctity of marriage and the fact that I simply cannot care for the kids without him, I really wouldn’t have the choice of ending the marriage…but I suspect it would have started rotting from the inside.

Thankfully, my husband has been willing to make numerous changes.  I still have moments when I think, “If he’d had the stroke instead of me, I would….”  But I’m sure he has his moments of negative thinking too.   Since it is what it is, we’re making the best of it.

Has someone in your life been willing to make large changes in order to support you in your recovery?  What changes have you made for yourself?  [I don't intend to open any wounds or cans of worms...don't feel like you have to answer if this one is too painful for you!]