modify the process, not the outcome: assessment results . . . and hope.

i’ve got scars i’m willing to show you / you had heart that i’ll never see / she had answers to all the wrong questions /  it’s funny, these answers are all that i need.

[…] we end up regretting the things we don’t try.

caldecott tunnel, something corporate

Multiple times, including Wednesday, this song came on my iPod via shuffle on the bus when I was returning from evaluation-related appointments. Unplanned, but appreciated–for some reason, in that frame of mind, the level of resonation was so much higher than it had been in previous situations listening to Caldecott Tunnel.

When somebody climbs into your head with a variety of questions and tests, it is certainly a strange experience–the questions they then ask after acquiring a basic knowledge of what is going on in there then start to lead you to believe that they understand what is going on.  It’s been crazy, and it’s sure as hell been emotional–but answers? I’ve got some of them.  I’ve also got more questions, but those will sort themselves out . . . because I’ve got solutions, too.

It’s been a flurry of activity in my brain . . . about my brain. Which is totally weird.

Now, if you are internally saying “Kerri. Cut with the preamble here!”, then you know how I felt when I got a bunch of pre-results preamble from my student therapist.

The testing for ADHD was inconclusive. I have a very significant inattention component, but very little hyperactivity [I am sure some of you will be surprised by that!]. Thus, they could not confidently give a diagnosis FOR or AGAINST ADHD.  So, I have considerate inattention symptoms, but also a low processing speed. Jay shed some light on this in an e-mail the other night [for which I am very appreciative, because holy acronyms batman.]

It’s the processing speed and the working memory that are of the greatest challenge for you which slips into the attentional difficulties category, yet makes sense that a full Dx of ADHD was not there and not ruled out.

The primary findings are that I also struggle more significantly with visual memory than I do with auditory, and to work with that. It is also recommended that though I could not receive OR discount a diagnosis of ADHD, that I consider discussing medication with my doctor to alleviate the symptoms of ADHD I do experience, which I am going to do in a couple of weeks.  I am still not sure of my thoughts on meds, and I do not want to be on something all the time, but as my friend Sara pointed out yesterday, and Jay agreed with, it could potentially be helpful for certain things. For example, attending lectures [longer days especially], studying, staff meetings, etc. These are kind of things I peg as having more structure, and thus not so conducive to having my brain wandering a significant amount and thus missing important things. Other things though, like downtime, and the nature of my job, are things that I don’t feel I require medication for, and I would rather not be on it all the time if that is an option.

Very cool, though, is I have a very concrete map of what things look like within my own learning style, and suggestions on how to maximize on that.  The testing revealed I struggle significantly with visual memory [which has been a surprise to many of my friends!], so it is recommended that I audio record my lectures, and use audiobooks for textbooks. Interestingly, my vocabulary and writing scores were very high [not to brag, but totally to brag–90th percentile, over here!], but my reading comprehension scores were significantly lower than expected [which could very much explain my dislike of English, but my love of writing]. When I read for fun, obviously reading comprehension is not such a big deal, but academically, it makes things harder. They also assume that because my language abilities are high is why I am achieving significantly more than the tests predicted–which, of course, is a really good thing!  (Because my processing speed is considered to be “Extremely Low to Borderline”, this would have negatively impacted my “full scale IQ” score, so they were unable to give me a nifty IQ number, which was disappointing! :]).

Currently, academically is where things require balancing out. And we’re working at that.

I had an appointment with Accessibility Services at my university yesterday morning, the [my?] Accessibility Advisor was absolutely fantastic!  They are truly going above and beyond the recommendations to hopefully make this school thing more successful for me now that we know what is going on.  Because I am getting my results really close to the end of the term, I figured we likely would not be able to get my accommodations in place for my upcoming April exams, but they are going to do their best! I have an exam on April 2nd during my class period that is obviously coming up soon and does not give us a lot of time to work with.  Accommodations for upcoming terms will include audio recording my lectures and having a volunteer note-taker in class so that there is less of a chance that I miss something in lecture. Finally, I’ll be getting audio versions of textbooks so that I can listen to readings and hopefully gain more information from them that way.  I found one of my textbooks this term has an online component, so I tried using that tonight paired with the screen reader. It will take a bit of getting used to, but I finished a chapter–with notes–in about two hours–this is a big deal! Prior to this discovery, it would take me significantly longer to get through readings without taking notes!

Everybody’s been asking me how I’m feeling about this. As I told the student therapist when she gave me my results (and she once again used her sixth sense like Dr. B did with the klneenex on intake day), because no i am fine this is totally a good thing, and oh my God you are explaining my life. Because lets face it, it’s been twenty-one years. It’s been more years than I ever let on to anybody that I felt something wasn’t right–how I felt that how I was working wasn’t working for me–especially this last year feeling like I should be doing better, but not knowing how I could possibly be working any harder than I was and still not doing well at all academically.  In reality, I think the culmination of things did not click fully until the accessibility advisor kept referring to this collection of whatever as your disability. That was an interesting concept to wrap my head around.

As I questioned in the aforementioned post: “What gives?” This. Now . . . we have pinpointed things. We are working at this.  And . . . I am finally feeling good about what is to come.  Whatever it is, it’s just me. This is how it’s always been. That is the interesting thing about this–there is nothing different about me pre- and post-asessment/diagnosis. The only difference is, we know where I’m at. And hopefully this helps to get me where I’m going more effectively.

It’s modifying the process, not the outcome. Hopefully though, through modifying the process, the outcome comes sooner and perhaps looks brighter.  I have no idea how the classroom accommodations are going to play out, how they are going to work for me, but I very much hope I start feeling some more success, as well as seeing it.  To that effect, I bought an iPad. I am hoping that between the audio textbooks and continuing to use Evernote and the text-to-speech feature on my Mac, that I can also incorporate some other technology, like textbooks via iBooks and Penultimate for the diagrams that are necessary, to intersect with my learning style, and what I need to learn effectively, better.

Finally . . . I am hopeful. I am hopeful that school will no longer make me feel completely defeated. I am hopeful that this opens up more options to me for whatever may lay ahead. I am hopeful that though I have learned a lot through this process . . . that I will learn even more as a result of it.

I am hopeful. And that . . . is a good thing.

looking back on 2012

At the end of 2011, I declared 2012 the year of Good Things. And . . . that little declaration delivered.

January

  • Jay, who might I add is the guy behind the phrase Good Things, guest posted about his type 1 diabetes story early on in the year. This has gone to be one of the most read posts on this blog–it also proved to me to just ask. I’ve learned a lot from Jay over the last year and a half, and I’m blessed that he chose to share his story here, too.
  • Thanks to my friend Steve Richert, I rekindled my love of climbing. Turns out that a youth event would be the only time I got up on a wall this year.

February

March

April

May

  • World Asthma Day 2012 means being intentional: a bike ride decked out in Team Asthma apparel.
  • I go public with my Stanford Medicine-X Scholarship deliberations.
  • I realize I am the only one in charge of my choices, even if circumstances change how I am thinking and I have to make it happen.
  • I turn twenty-one — and announce that I’ll be going to Quebec City with the Asthma Society of Canada for the World Congress of Asthma and making my way to California for Medicine-X!

June

July

August

September

October

November

December

Except for a few blips, I feel that 2012 was a pretty darn good year.

Year of Good Things? Check! Time to bring it home.

diabetes blessings week

November is Diabetes Awareness Month.  As I write this on Thursday, in the US, it is Thanksgiving Day, prompting this week to become Diabetes Blessings Week.  Mike encouraged me to participate and share what diabetes has blessed me with–as a person without diabetes.

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I don’t know if I can call diabetes itself a blessing–it is still a relentless, incessant, 24/7 job of micromanaging.  I don’t know if I can call diabetes a blessing because I am on the outside of it.

Yet, I do know that I have many times felt the pure impact of good things that would have never happened to me if I didn’t have asthma, and I know that many of my friends feel the same about their diabetes. And I do know the beauty of the Diabetes Online Community–the people, the love, and the hope, which are every bit as relentless as their circumstances try to be. These people encourage me every day, they make me smile, they have been with me through good and bad . . . these people are my friends.

Diabetes has blessed my friends with perspective, with determination, with perseverance.  It has blessed them with a greater sense of knowledge about themselves and about what they are capable of getting through, pushing past and climbing over.

Diabetes has blessed us with community. I have never encountered a health community like the DOC–supporting one another through diabetes in its many forms, but also in life.

Diabetes has blessed me with stories. With perspectives of others enriching my own.

With love. With hope.

With friends . . . nearby and around the world.

good things

On my break at work the other day, it occurred to me that I had never really covered the phrase that is good things in the content of this blog. I encourage you to share your own thoughts in the comments section, I would love to hear them!

As irony would have it, it took me months to realize that I walk in to work every single day and this is the first thing I see [I am being all Ramona Quimby, Age 8 about it, sort of]. Good Things . . . happen to people who try. It is honestly the best reminder to see frequently eleven months a year.
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It is a complete coincidence that Good Things is a thing that Jay and a friend of his came up with to encourage others. I mean, it is the simplest phrase, and that is why it is so golden. To quote an e-mail from New Year’s Day in a discussion we were having about this phrase:
The interesting thing about “good things” is I see it like this …. all emails, messages, texts, and conversations involve a lot of content and affect … a lot of emotion… yet through it all regardless of what has transpired … regardless of how tired you might be … uncertain… scared… proud… hopeful …. things are still good … that does not mean they are easy….yet if you step back you realize things can still be good.
Jay Greenfeld
I send dozens of e-mails a week. And [dependent on the level of formality, of course] I attach a “good things!” to the end as often as possible [usually a “thank you, and good things”, but regardless] as inspired by Jay’s e-mails, with hopes to inspire this thought process in others as he did in me . . . through a simple thing.
Simple things are what make the difference. The choice to make this realization that “things can still be good” regardless of circumstance.
Simple things that prompt a reflection on what is good, what continues to be good, and what will be good in the future–to keep everything in perspective.
Simple things that encourage me to make the right choice, in whichever decisions I encounter in a given moment/day/week/month/year. Because each choice acted on may chase another recklessly into a new chapter of the journey towards further good . . . and you just don’t know until it unfolds.
Simple things . . . like a roll of painter’s tape and a purple wall in my bedroom above my bed:

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. . . To remind me to always recognize the good things. In my life, myself, those around me, and the circumstances around me, amongst the entire picture.

. . .  To remind me of this every day I wake up, with hopes that I will not stay in exactly the same place. That I will grow intentionally. That I will trust but recognize the process. And that I will encounter everything I am meant to. All the good things.

The simple things that are good things.

And the good things that are here . . . and yet to come.

twenty-one in twenty-twelve . . . continuing the good things

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With anatomy, work, class and a crazy week in the mix last week, I feel like [aside from yesterday] I have not blogged in forever. And this is accurate. Caroline jolted me into this realization that i have been a less than attentive blogger the last couple weeks.

I declared 2012 to be the Year of Good Things. It is delivering.

I turned 21 last Monday. Last Saturday my aunt made me this:

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I went to my fourth Switchfoot concert, which was amazing. There was a spontaneous chant for moustaches. I fell in love with The Rocket Summer because of this concert.

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Medicine-X

I am excited that I will be attending the Medicine-X conference in Palo Alto, California!  As I mentioned previously, Stanford has graciously awarded many ‘ePatients’ with “scholarships” to the conference. For me, this includes the conference, accommodation for three nights, and a good portion of my airfare. I am VERY excited to meet so many people who I have connected with online, and who I have yet to connect with in September! I’m SO excited to meet Kim and hopefully Cherise at the conference as well as hang out with Steve in San Francisco the day I get in.

But before that . . .

World Congress on Asthma

In 2010, I partnered with the Asthma Society of Canada as a member of the National Asthma Patient Alliance Executive committee. I was finally able to attend a conference call in May, and engaged with many amazing, passionate people with my laryngitis voice. A few months ago we were supposed to attend an event in Toronto which did not work out, but we will be meeting in person in Quebec City this summer at the World Congress on Asthma! I am very excited for this opportunity and to be among the handful of patients attending the conference. During my time in Quebec City, I plan to meet with two of North America’s most prominent asthma researchers, Dr. Sally Wenzel and Dr. Dilini Vethanayagam, and am very excited to meet both of them in person after multiple e-mails not only about asthma research, but improving the patient support experience.  As a part of this, I hope to be able to connect with those in my own community (such as Cathy on the NAPA executive with me) and across the country, and around the world.

I’m also hoping to walk the Diabetes Run for the Canadian Diabetes Association in September, along with the small-town Imagine Mental Health race I’ve done the last two years. I suppose I’d better get training!