You can’t resuscitate a person who was never born

Lately I’ve been pondering my relationships to other people a lot.

Which ones are healthy, which are not.

Family dynamics, how I raised to be verses who and how I want to be, who I want to keep in touch with regularly, who I want to see in my facebook newsfeed, who am I good with only hearing updates from sporadically, possibly never. How much space in my life and brain do I want to give to people, because I am quick to give and help as much as I can, yet when I’m in the place of needing help of any sort, I find myself with very few at my side. I’m the youngest in my family, but I have the need to make sure everyone is happy, like a middle child.

This needs to change.

Last year I tried reconnecting with a person I used to call my best friend, who seemed to be initiating the reboot of our friendship. Eventually though, one day she basically told me she didn’t have time for me in her life, even though we live a day’s drive away from each other and I have trouble speaking on the phone, so not much commitment is needed. This is a person who swore she’s always “be there” for me, and there she was, dropping me like a hacky sack. For a while I lamented over the lost friendship, but then a verse from the song “The Stars”, by Jukebox the Ghost, kept playing in my head:

“A spark that’s lost is not a spark to mourn, you can’t resuscitate a person who was never born.”

Truth be told: I knew, deep down, that we were never close.

I have always had multiple groups of friends, with a few “best friends” in each, or so I thought. As time went on though, I realized those that I thought of as “best friends” didn’t really no me much at all, and also that they probably didn’t know I thought of them as best friends. This is partly because the fogginess in my thinking causes me to have trouble following though with ideas, so if all you can see is results, rather than intent, I’m not a good friend. Behind that is a ton of works in progress and ideas, along with a slew of letters, written but never sent. Some were forgotten, some lost, some I thought I clicked “send” for, but months later when I pondered the lack of response, I’d discover that somehow, it was not sent. I am very thankful that somehow my husband has always seen my intent, from the very beginning.

My thinking is getting to choppy to truly finish this post.

Hopefully the gist is here.



The words I cannot find myself

The other day my friend shared this video of a poet named Andrea Gibson reciting their poem “The Nutritionist”. Boy does it ever speak to me. Here are the words written out, if you prefer.

Another poem, by the same woman, shared by the same friend reads:

“…this is for the no becoming yes
for scars becoming breath
for saying i love you to people who will never say it to us
for scraping away the rust and remembering how to shine
for the dime you gave away when you didn’t have a penny
for the many beautiful things we do
for every song we’ve ever sung
for refusing to believe in miracles
because miracles are the impossible coming true
and everything is possible…”

This one stood out even more, because the night before I was trying to put into words that exact thought,

“for refusing to believe in miracles
because miracles are the impossible coming true
and everything is possible…”

but was unable to do so, which is a common problem for me because of my neurological problems. All of the poem is excellent and speaks to me, but that last part, are the words I couldn’t find.

Thank you, Andrea Gibson.


Returning after an extended hiatus

It’s been a little over a year since I last posted. 

2014 brought a lot of difficulty for me. Basically the whole year I spent with only glimpses of the wellness I long to experience. Still, I became much stronger in many ways, so while it’s been a rough year, I see where it’s taking me, and it’s exactly where I want to be at the end of all this. So I’m focusing on enjoying the ride, rather then lamenting what I cannot currently do.


That’s been my buzzword for a while now. More than anything I’m working towards strength, because wellness I don’t have much control over, but strength, more so.

A lot changed in 2014. Many things we were hoping for came into fruition.

I made a fantastic dress, with the help of my mom, while she was visiting this spring. I only had the pattern kicking around since… circa 2001. You can see it on my profile page,

I found a community of people with hydrocephalus in the form of a Facebook group, and even attended one of the local Hydrocephalus Association gatherings, where Tim & I learned all about shunts.

Tim didn’t take the new job that we were highly anticipating and had spent the previous year preparing to move for, nor the other job he was offered a bit later. As such we didn’t move to PA… twice, which turned out to be a very good thing, since roughly a month after declining both jobs, we were told I was on another travel ban. Still, it was well worth the trip home (that seemed to cause it) to visit everyone and attend an old friend’s wedding

Both Tim & I each lost a maternal grandmother, both of whom who had been suffering a long time. Thankfully, I was doing well enough at the time that we were able to make the trip back for both funerals.

Tim’s job greatly improved, to the point that we felt comfortable signing a year lease at a new place that just happened to drop their prices right into our price range. This place is fantastic: a gated community, meaning I feel safe going for walks alone; it’s on the first floor, so no it has steps; it has a very handicap friendly layout, which has alleviated a lot of stress; it’s much quieter; there’s a screened in porch for me to enjoy the outdoors with privacy; and best of all, it’s a 7 minute drive to Tim’s work. Oh and it scratched off a childhood bucket-list item –a Sheetz is not only viewable from our porch, it’s within walking distance …as in next door.

I also was approved for disability, backdated to when we moved to VA. It took only one appeal, which I did on my own, after seeking a lawyer’s advice on how to proceed. It’s been a total game changer: Debt is paid off, save for one student loan; we’re eating organic and/or local food, so my tummy is happy far more often; we can afford for me to see the doctors that I need to and Tim doesn’t have to work so much; and we’re getting ahead rather then falling so far behind. After the winter we had, which was filled with much loved and longed for snow, which caused Tim to have few working days, things were becoming scary. Disability came at just the right time. Now I’m working on being ok with the fact that I’m “accepting money from the government.” I have to remind myself that it’s insurance that I paid for, and I wouldn’t feel guilty letting my health insurance company pay for my medical bills, so neither should I feel guilty about this. Also, wrapping my head around being disabled is a task all its own. My goal is to start working one day a week by summer, but we’ll see how spring goes before we go ahead with that.

Tomorrow is what I grew up calling Little Christmas. I didn’t know then that it would be the only Christmas my Father-in-Law and Grandmother-in-Law celebrate, and as such traditions would abound, such as Christmas caroling in January. I was hoping to be strong enough to make it to the celebration in Connecticut this year, so we could also visit my maternal grandmother and Tim’s paternal grandmother, since both were having poor health throughout the year. However, a week before the Christmas Tim and I celebrate in December, along with most other Christmas celebrators in the USA, my grandmother passed away. It was not unexpected, since grandma had been placed on hospice right around her 90th birthday on Thanksgiving. Still, I found myself sobbing off and on for a few weeks after (the crying has lessened, but still happens), and it was all a blur, since her wake was the next day in RI. It was nice revisit pieces of my childhood and see everyone, especially since it’s a time of year I often saw grandma and my Aunt Gerry, and we did stop in Connecticut on the way home, but the craziness of that trip has made it so that another trip right now is not possible. So my thoughts keep drifting to the fact that we hoped to see grandma right now, and instead she’s not there for us to visit anymore, rather a tombstone is. I’m still processing my grandmother’s death, and grappling with the fact that I couldn’t see her more due to my own problems. I remember the reaction she has to us telling her we were moving to Virginia -it was hard to stomach, but truly we had to if I was ever to have a chance at becoming well. Sadly, by then, there was no way of her comprehending such things.

2015 will see me become 30.

It will see the 10 year anniversary of my 2nd ETV (Endoscopic Third Ventriculostomy) and the 20 year anniversary of my first ETV.

It has me curious as to whether it will be the year of my 3rd ETV.

It has me wondering a lot and hopeful.

2015, cheers!







That which we have. That which we want.

Holidays have always been hard for me, for various reasons.

The hardest part though, which I face daily, but am most reminded of this time of year,

is the fact that we do not have children.

Tim and I both want kids, plural, and we especially want them to have a better life than us.

Which is why we haven’t had any, yet.

It’s also why we don’t know if we ever will.

We get reminded often that we should. Whether it be because it’s what a good Christian does, or that they think it will miraculously heal me, or simply because they think we’d make great parents, people say it.

A. lot.

And this one of those things that taught me to forgive people for being unable to understand, to forgive people who just cannot grasp what it is Tim and I go through, and to just forgive.

Adoption though, that’s always a choice -right?

Maybe, who know’s, it all goes back to me being sick.

We debate if we should have a kid, ever, because of my health and the potential of the baby being born with my problems. We debate if we can ever adopt because if I do get over this, there’s nothing saying it won’t all come back. We talk as if we’ll have them and wonder what it will be like if we don’t. Just adopting our cat was huge debate, because of the particularities of me. I’d like a dog too, but we’re waiting until I’m healthy enough to walk it most daily.

In our heads we’re having kids, though we have plans for if we don’t, and so at the holidays, above everything else, there is an emptiness because those mini-us are not in our lives.

6 years married.

By now, we were expecting them and so much more.

Instead, we’re thankful that I’m alive. We’re thankful we’re still together and have a strong relationship, we’re thankful for my doctors, we’re thankful for Tim’s job. We’re thankful for lots.

It’s not the life we expected, but we are extremely thankful for it.


P. S. Check out this video, since is was the last straw that triggered this post. It’s the first year of a baby who was born premature.


Becoming at peace.

You may have noticed my continuing lack of posts lately.

It’s fall. Aka: Spring, in reverse. The crazy weather patterns are messing with me, as are all the molds and such in the air. Thankfully it’s not in the form of actually being sick, like coughing wheezing and all that stuff. Nope, instead I’m thinking unclearly, the ability to speak is something that comes and goes, and I can’t be positive I’ll be able to walk at any given time.


It’s not a constant thing by any means and I’m still doing way better this fall, than last. As in, housework is mostly getting accomplished, many things I’ve been wanting to do have been done, and I’ve been speaking on the phone with people much more regularly (which is still far too little, but it’s a start).

They say this winter is going to be a rough one, I’m not sure what this means in Virginia, but I am wondering how I’ll fare in regards to the barometric pressure changes.

We’ll see.

Tim & I are not sure if we’ll be traveling much over these next few months, for the holidays. We’re thinking it’s better if we don’t because trips can really bring me down and that doesn’t jive well with the whole healing idea. But, we love to travel and want to see friends and family, and the idea of not going on road trips to see people is making me sad …so really no decision has been made.

Holidays while I’ve been sick have been a bit of a drag. Don’t get me wrong, celebrating anything with Tim and Rory rocks. But these are not the holidays I envisioned I’d be having at this point in my life.

Thankfully though, lately I’ve been becoming at peace with much that has bothered me. Even small things, like being stuck in traffic, I’m ok with, because it gives me a chance to look at the scenery and ponder. Not that I’d volunteer to be in traffic, it’s one of the things I most dislike about this area, but if I must be in it, I might at well enjoy it. If it makes me late, so be it, no need to stress out about it.

The same goes with bigger things like not traveling for the holidays. Yes, the idea of it makes me sad, but not in a fully depressed way. More in a “I wish I was there to enjoy time with people I seldom see” way. Still, if we don’t, we don’t. Tim and I will still be together. We’ll still celebrate. Walking around downtown last year, with near null cars or people out, was pretty cool. Perhaps we’ll make that a tradition: Christmas morning family walks.

Being at peace allows for more giving thanks. It allows for less worrying, and more healing.

My past was a bit shaky, due to the lack of understanding surrounding what was happening to me as a result of my surgeries. It’s hard to like the past you, when you can’t figure out why things were the way they were. I get it now though and I understand I was trying to do the best I could with what I had. Mistakes happened, but as long as I take them as learning experiences, perhaps they were never mistakes, but things I needed to learn. Perhaps mistakes are only regrets for decisions you didn’t fully believe in, but as long as you put thought and effort into everything you do and find understanding behind what you did, what is there to regret?

I’m becoming at peace with the fact that I’m not a fool and I’m not lazy. Yes, people have been mean, people refuse to understand. I’m becoming at peace with understanding that I can’t make them understand, because it’s how they are wired, it’s how their brain works. If they want to, they’ll find a way to “get it”. Until then, there’s no need to waste my effort or breath on a person who will only drain me.

I don’t know what wellness will mean for me. I don’t know if I’ll ever accomplish a lot of my goals because of this. Trying to do something is awesome and if I fail at my goals, no biggy, it was something to aim for, something to be passionate about.  The hope is I’ll find more normalcy with time, and this is what I’m rooting for. Still, if it never happens, if I’m forever in this neutral area of going in and out of functioning well, I’m ok with that. I’ll do what I can, when I can, and enjoy the times when I cannot for what they are: a time to heal, a time to ponder, a time to be still (well, in the living life sense, not usually in the lack of spasms sense).  I work to find alternatives to still make other dreams realities, and since I have many dreams, I know that inevitably some will come true.

Currently I’m married to my absolute best friend, live in the South, have a former kitten. I’m not feeling old (apparently many my age do, crazy talk), I’m healing, I still am able to help others, and I actually like myself (while knowing I have much to work on). These are all things I dreamed of at some point or another and they are now true (and only a few!).

Most of all, I feel that while I growing up I always knew what and who I didn’t want to be, I feel that now I am fully becoming aware of what and who I want to be. I know what I want my life to look like and the things I want to do. Some people never get that, so I am very thankful for this.

Dreaming big, while being at peace with the present, the past, and any potential futures -that’s me and I’m loving it.


P. S. Here’s hoping this isn’t just bunch of words, but rather makes sense to others, not just me!


Affordable Care Act Ponderings

Right now, I’m going through a bout of thinking tons, while having difficulty putting my thoughts into coherent paragraphs, as well as spoken sentences. So, bear with me.

I’ve been trying to figure out what to say if the person I was speaking to in this post decides to bring up their hatred of the Affordable Care Act again. Since we’ll be having dinner with them tomorrow, I thankfully figured it out today over my lunchtime conversation with Tim.

Again, putting thoughts into words and sentences is rough right now (half of my mid-day chat with Tim consisted of him having to carry the conversation, because I could not respond, he’s sweet like that though and still wants to stay on the phone with me even when I am in such a state).

My comments, from hence forth, to anyone choosing to bring up being against the Affordable Care Act:

Personally, I want an open market system across state borders, with the stipulation that no one can be denied coverage, nor have super high coverage, based on having a pre-existing condition. The Catholic Church could then start their own insurance company, or endorse a company, that does not cover abortions. Planned Parenthood could endorse or create one that covers the cost of abortions and birth control. Personally, I’d be all for a policy that’s more for alternative medicine. This is America, last thing I knew, we were obsessed with having choices. Why, why, why, must it be so complicated? I imagine it would be something like how car insurance works.

P. S.  In my home state of NH, you (well, most people) don’t legally have to have car insurance (read up on that here), so New Hampshirites also get uninsured/ underinsured coverage, to make sure they’re protected from those that choose to drive without insurance. Some food for thought.

Here we are though, many years into this whole affordable healthcare debate, and no body was able to get anything like that passed into law. So, for now, I am pleased with the Affordable Care Act, because of the reasons that I said in that other post. This is where I tell you why I have a beef with repealing the whole thing.

When the government initially shut down, the Republican Party was trying to nix this whole thing, which I might have been ok with, had they have said, “We’re scraping that one, but we have this super amazing better one.” Instead, what I mainly heard was:

“We think it’s more important to uphold our ideals, than it is for you sick people out there to be able to get affordable health insurance as of next year.”

Say all you want, but I believe my right to affordable health insurance is more important than your ideals. Anyone, at any time, can find themselves in my shoes.

I’m not asking for free insurance.

I’m asking for affordable.

Any complaints I’ve seen about the Health Insurance Market Place, regarding costs, say that they, with their family of 4, are being forced to pay in a month what we, with my husband’s policy through work, pay in month, and they can’t afford it.

The market place is income based, though, and for us, or insurance will be cut in half-ish, as far as I can tell (yeah, like everyone, I’m having trouble with the site, which is part of why I wish this wasn’t through the government, but again, this is what we have to work with for now). So, if you make enough money that the government deems you are able to pay for it, imagine how hard it is to pay with half that income and a ton of medical bills and the like NOT covered by your insurance.

I hope this made sense.



– I have not been writing in the blog much. I’ve been pondering it a lot, but the thoughts never sorted their way into a post, but I’m ok with that. Hopefully in time it I will become a more regular blogger, if not, I’m ok with that.

– We are celebrating 1 year of Rory being in our lives (yesterday was the actual day). The plan was for us to have a cake and for her to have the joy of ripping a roll of toilet paper to shreds. Alas, for the first time ever, she could have cared less about a roll of toilet paper’s state of being. This was a major let down, as I was hoping for some epic pictures to share. Instead I have videos of her bewilderedly  staring at the toilet paper, that aren’t even funny enough for YouTube and that’s saying a lot, I know.

– I’m mulling over how to make said cake even better. It was 100% from scratch. I found it while on a Pinterest spree a while back under the name best chocolate cake. My Review: The icing was fantastic (I used cream) and the cake was super moist (even with me forgetting to add a bag of pudding to the mix), but I felt it had a bit of bitterness that I personally didn’t care for. The only changes I made was using whey instead of buttermilk (because it’s what I had) and I did not use the King Arthur Flour Black Cocoa, so I’m thinking it’s either from using the whey or the quality of coffee I used -Folgers. We’re not a coffee drinking, so I bought something inexpensive a while back (when I made the ever-so-complimented Nutella cupcakes. Still, Tim and I both agreed it was on par with something one would get a restaurant, so I’m not complaining.

-The HealthCare.Gov website is being finicky for me, as with most people. I have most of my profile set up, but not all, so I have yet to see what the actual offerings are. Still, I’m not too concerned, because we still have a bit of time. We did, however, receive a letter in the mail saying the insurance we buy through Tim’s work is going to be different next year, so there’s that. Really, I hope the government gets their act together on this one. Also, I would like to say that this process is still way better than applying for private insurance where they want to know every single detail about your health history. Yeah, that took like a week for me to fill out.

– The government is back up and running today. Living so close to D. C. and in a historical city, it did impact our area quite a bit. Although, in this house it basically meant we couldn’t go to the free sites we had planned to see over the past few weekends, as part of our wedding anniversary trip to Richmond (we still got to see the Confederate White House though, so all was not lost). Also, it reaffirmed my beliefs that it is better if the government is smaller, because right now it’s a big monopoly in more than one way; while also solidifying my want for more third party representation. There also may have been a few talks here and there about jumping an ocean, but that’s nothing new.

Duolingo says I have a 23 day streak of daily use.  That’s 2 weeks with French, now on Level 5; and 3 weeks of Spanish, now on level 7.

That’s all.


The Perfect Storm

I’ve lost count of the days, but walking has not been a hobby of mine lately, rather my computer is currently my best friend. This is thanks to -ready for TMI?- getting sick, then surfing the crimson tide (Clueless, anyone?), followed by a hurricane forming in the Gulf. All. At. Once.

I ache. I walk mostly slow, crooked, and hunched over. I miss yoga. The dishes, the house, the everything is a mess. OH and to top it all off, I payed the bills not knowing I was in the phase of the sickness where ones brain cannot work. Now, if you recall, my brain’s not the best to begin with, so needless to say, we learned that our overdraft protection does indeed work and that I really should not have put Tim’s entire month of pay into savings. Thankfully I put “safety nets” into place a while ago to help in case of such an occasion.


A time to heal.

That’s not to say this is all bad, I’ve been soaking up all Duolingo can give me (and my brain can take, which was not much until recently, so this is awesome) in Spanish and even decided to start on French. It turns out I’m having an easier time with Spanish, now that I’ve started on French, because I’m doing better at not randomly remembering French words whose meanings I am unsure of. Instead, I remember them, know what they mean in French, then recall the Spanish. Coming soon: Moi, fluent in 3 languages. Well, that’s the hope. I will still need Rosetta Stone or a trip abroad, to perfect these skills. One thing is for sure, all the reverse order of words stuff sure has me wondering if I even speak English correctly (hint: no).

Still, if I could use this time to edit those photos from when I went to my grandfather’s funeral, so I could pass them along to the rest of the family, that would be great, but not so much. So, 2 languages I shall work on and hopefully the dishes actually get done today.


P. S. There’s actually a load in the dishwasher, that I loaded when I semi-felt well a few days ago, but was waiting until it was completely full to start. Tim and I both keep forgetting to turn it on. Yesterday, we ate soup with forks.

P. P. S. It’s really not that bad here, we just have a small kitchen, with much having been packed, because we hope to move soon. Yes, the kitchen is part of the reason.

P. P. P. S. Rory turned 1 possibly on Tuesday (we can only estimate the day of her birth, since Tim found her as a stray) so we gave her a package of salmon that we knew was a bit more than she normally eats. She scarfed 3/4 of it down, instantly threw it up in a perfect log formation, then immediately attempted to eat said puke. We all agreed it was her best birthday celebration yet.

P. P. P. P. S. Porphyrius’ new owner has apparently sold him to questionable people via Craigslist, because his frame finally broke. This is breaking my heart. The good news is that I think my brother-in-law grabbed the CB for me, so at least I might have a small bit of the Good Sir.


Currently I am:

~ trying to get over being sick, thanks to Tim passing along what he apparently was given by his co-workers. I had been doing so well, but it’s not a bad thing that it semi set me back, rather it is another reminder of why going back to work right now is not feasible …’cuz when I get the slightest bit sick I lose gross and fine motor skill, as well as lack the ability think straight. Those both are pretty important skills ones need on the job, at least in my experience.

~ super excited about a business idea I have, one that I think we can actually do sooner than later, as in while I’m still in healing mode. Tim likes it and agrees, so there’s a start. Until I am well enough to really do anything with it, I can spend my time simmering on ideas.

~ thankful and surprised that we were specifically given a share of this week’s CSA from the local garden. It was given to our neighbor/landlord with instructions that it be given to “Tim & Tina” …close enough! We know a lot of people active it, but personally do not have a share purchased. We debated this past Spring, but seeing how we were gone most the summer, I’m glad we did not. However, when we are able to, it’d be nice to buy a share, then instruct them to give any shares we could not pick-up to a local family …perhaps that’s how we acquired this one?

~pondering what to make with all the said yummy goodness given to us! (some of which I’m only guessing as to what it is…)

~loving that I might be able to at least affordably develop film (which I’ll then scan into my computer) until I’m able to get into a darkroom because of coming across this:

obsessed with working towards becoming fluent in Spanish (finally!), via Duolingo, an awesome and free language learning website. So far I’m mainly reviewing that which I learned in my previous college courses, but I’m amazed at how much I remember and how quickly I’m picking up new things because of its immersion-esque teaching format. The hope is to do Spanish, then French (which I took 4 years of in high school), then move on to German. My experience with that last one is mainly from asking my fluent friend to translate phrases, rather than paying attention in high school (you know, important stuff like “We are the Planeteers!”) and listening to my Rammstein tape (which I really need to buy on CD), so it’ll be interesting to see how I do on that one.

hoping that the government won’t shut down and that I will be able to buy my own health insurance next year, independent of my husband’s job, while trying really hard not to be pessimistic about it.

hoping that Tim and I will both be over being sick and able to go to a yoga class this weekend.

Excited to see the new Michael J. Fox show this weekend (thank you Hulu). This might be why we’ve been watching “Family Ties” all summer, while nothing new was on TV.

disappointed that I wasn’t obsessed, like I used to be, with the new “Whose line is it anyway?” Maybe I just need to see more episodes?

amazed that my not-as-little-as-she-once-was kitten will be 1, next week!