September 9, 2021 - One decade... be present.

It’s been a decade since I got sick. I didn’t know then, that night, that my life was dramatically changed. I’ve done therapies, and they’ve...

November 4th 2015 Why I can relate to an astronaut on Mars....

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It never occurred to me that I'd relate to an astronaut on Mars, but I did.  A lot of people have heard of the movie The Martian, starring Matt Damon, and of course it's based on the book by the same name, written by Andy Weir.  I decided to listen to the book, which fortunately was available.  There were three things in The Martian that really struck me.

1) Community
2) Problem solving
3) Attitude

Mark Watney - the main character or the Martian - had already nearly died twice, about one and a half hours into the book.  So for me, this book is not about suspense, it's about the process.  I'll admit it took a while for me to get into the book - I wasn't sure about an hour and a half into the book, if I'd keep listening.  But I knew he'd eventually make contact with NASA, so I kept going.  The technical stuff gets a bit tedious at times, in my opinion, if you're not really into math and technical stuff, but it does give you a sense of the thought process of an astronaut. I liked the fact that the actual writing style is very straight forward.  I think it fits the subject matter. 

It's wonderful how everyone at NASA pulls together once they figure out that Watney is still alive.  Each person puts in a tremendous amount of time and effort, which is what I mean by community. I really came to care not just about Watney, but about everyone.

I mentioned the time and effort everyone puts in, which brings me to the problem solving.  Mark has to solve one problem after another.  Andy Weir uses the device of Mark's daily Mars (or saul) log to have him share his thoughts, ostensibly with whomever reads the notes once they find him, after he's died.  So we get a look inside someone's problem solving thought process, at least to a degree. 

Given my own lifestyle - particularly getting past my setback - of constantly figuring out how to do things, and what to do if I encounter a problem, I could really relate to this. Granted I'm not, fortunately, in a life or death situation, but the idea is still the same. For much of the book, Mark isn't relying on anyone besides himself, his own brain to survive, which is an interesting concept.  I'm thankful that, unlike Watney, I am not alone.  However, even with my medical team, I still have to figure things out as I move through each day.  It's not like I have Joyce, Ann or Dr. Margolis following me around each day.

Now about Watney's attitude.  Watney writes in his log about a few "temper tantrums," but mainly he's very focused on what he can, and needs, to DO.  His goal is to survive until he's rescued, so it's always about what he needs to do in order to survive, and how he's going to make that happen.  He breaks every problem down into small components, which reminds me of what I need to do sometimes with my VT or FT.  If I'm having a problem, I have to break it down, and say "OK, so what's giving me a problem here?". 


I've learned, and am still learning from my setback.  How specifically did I push my boundaries too much?  What tools do I need from Joyce and Ann in order to move forward more successfully?  Fortunately Joyce and Ann both listen to me well, and have ideas to help me as I work on getting back on track.  Watney has to expend a tremendous amount of effort, but in the end that's OK.  When he succeeds with something, especially if he encountered something unexpected, if he's still alive, it's a win.  I like that - that things don't always go according to plan, that you can't always - no matter how hard you try - predict reactions - but especially when you have to deal with unexpected hurdles, getting through something difficult is a success.

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October 28th 2015 Regrouping, getting myself back on track...

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Apparently, I've been doing too many new things - both small and not so small (at least for me), so I've had a setback.  I decided to share this because I've said that I'm sharing my story, and since having a setback can happen during rehab, I thought "well, this is part of my story."

It's very frustrating.  Doing new things, challenging myself is supposed to be a good thing.  I noticed that my post about pacing hit home with a lot of people, and I thought to myself "well, I guess I have to re-think my own pacing now."  So I'm dialing it back, and getting back to my baseline.  Then with the help of Joyce (FT), Ann and Dr. Margolis (VT) I'll figure out how to keep moving forward. 

Some people feel the effect of doing something right away, and for some people, for some things there's a delayed reaction.  I think for me it depends on what I'm doing, how aware I am of how I'm feeling, and if I try to push through or not.  As I've said before, pushing through is something you are - I am - supposed to do.  It's tricky sometimes to know when it's a bad idea.

As part of dialing it back, I'm taking extra care to take care of myself.  Getting enough rest and staying well hydrated are both really important.  Paying attention to my breathing, and doing my breathing exercise is also important.  I'm focusing on playing my flute, but not reading music.  I'm grateful I can still play a bit.  I'll just play for pure enjoyment without all the work.  Playing music from the written page is only enjoyable if the cost is low. 

I'll be more selective about what I do on the computer, for example how I use Facebook, since computer usage is very demanding.  I'll figure out some less demanding projects for myself.  Indoor gardening - think houseplants - is one that comes to mind.  As always, I have to figure things out as I go, because I don't have a blueprint.  However, I trust and am grateful that I have Ann, Joyce and Dr. Margolis to help me.


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October 20th 2015 Pets; being around animals is a good thing

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I've always loved pets.  We got our first cat, Goldy, when my daughters were about five and three years old.  We got our dog Cosmo when our daughters were about 12 and ten years old.  When we had to put our cat Goldy down, a year ago last June, I knew I wanted to get another cat.  We now have Maisy, who is about two years old. We've never had any serious behavior issues with Maisy or Cosmo (nor did we with Goldy), and although they still haven't figured out how to play together, they're quite peaceful together.  Occasionally I think there's a bit of sibling rivalry if one is getting attention, but it's never been a major issue.



I truly believe having a loving little animal in your life makes it better, and if you're not a cat OR dog person, I think having some kind of pet is still a good thing.  However, if you are not in a position - whether because of finances, the rules where you live, your health, or whatever - to take proper care of a cat or dog, I DON'T think owning one is a good idea.  Being a pet owner is a big responsibility - not as much as a child - but a responsibility nonetheless.  If you want to be around pets, and can't own one, visit a shelter.  The animals are ALWAYS happy to get attention - though you should make sure you know the rules of the shelter you visit.  You can also have a friend come over with their pet, or if that's not possible, go to them.  I've heard wonderful things about how therapeutic horses can be, so visiting a stable is also something to think about.

Having pets is even more important to me now that I have my invisible disorders.  I love to watch them.  Cosmo is a sweet, good natured 20 lb schnoodle (schnauzer and poodle) who would never be able to be a true therapy dog.  He gets much too excited when he has the chance to meet someone new, but a therapy dog was never the goal.  I love the typical dog stuff - the wonderful hello when we get home, the dog smiles (yes, dogs definitely smile) when he's happy, the curving body when he's getting attention.  I love watching him wriggle on his back with his legs in the air, rub his sides against our couch - he LOVES to do that - and the goofy way he rubs his ears on the floor after I put ear cleaner into them! 

Maisy is equally adorable.  She's fun to watch doing goofy things, like when she rolls over on her back, and then back over again just like a baby figuring out about her body.  She likes to have her tummy rubbed, and of course her head and ears.  Just like a toddler, we have to make sure she doesn't get herself into any serious trouble, and it's funny when I lie on my stomach doing what I call my "sphinx" Feldenkrais exercise, and she rubs against my head.  I don't think it matters at all to her that it's my head rather than my legs, and it's adorable - even though I can end up with a face full of fur.  She's completely cute and entertaining to watch doing typical cat stuff, like chasing imaginary monsters, hunting a stray leaf or one of her cat toys.

When I watch Maisy and Cosmo, I notice how easily they move their bodies, and wonder why we humans are so good at doing things that don't work well for us.  Unlike humans, cats and dogs don't seem to develop bad habits with their bodies - they are able to hold onto doing what works for them without even thinking about it.  I know that dogs (and I think cats as well) can develop balance problems, and of course other health problems, just like humans.  And it's true that occasionally a cat or dog misses their mark with a movement, but it doesn't seem to bother them.  Far more often than humans, a cat or dog will right themselves, and keep on moving uninjured.

I get very frustrated sometimes; I want to be able to improve faster, and not have to deal with all the management and coping stuff I've written about.  I want my improvement to be a consistent, straight, upward slope.  But no matter how much I want that, I know it's not going to happen.  Long term rehab just doesn't work that way.  When I'm feeling down or stressed, caught up in this emotional mess, a snuggle with Maisy or Cosmo is guaranteed to make me feel better.  It's just - for me anyway - an instant stress reducer to feel those warm, soft little bodies.  They are my babies, regardless of how old they are, and they make me feel better. 

Maisy and Cosmo also remind me to be present.  Dogs and cats don't think about what's going to happen in an hour.  Cats are a bit more contemplative, and both animals get to know routines, but it's very different than how humans plan.  Personally, I think being a bit more cat or dog like wouldn't hurt most of us.  That's one reason being with them is a stress reducer for me - I'm just there, with them, and that's it. 


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