Yet another poem I wrote to Lyme (whom I’ve decided to personify for the sake of poetry and emphasis)
“I will make it”
I don’t believe I caught your name
But maybe that’s on purpose.
It leaves you free to justify
your damage, ‘neath my surface.
I don’t believe I caught your name,
but understand, you see,
even without a “My name is”
you’re no stranger to me.
Oh, you may think by hiding out
for days and months and years,
you forced me to find different names and reasons
for my tears.
A pill for this, a shot for that,
but that’s a scary game.
Amidst my drastic efforts to heal,
you waged war, all the same.
I don’t believe I caught your name,
but you don’t have to tell it.
I’ve names enough for you, so bad
Satan himself is jealous.
Regardless of my circumstance,
And my “you-inflicted” pain–
I’ll tell you once, right here and now–
You don’t deserve a name.
A name delegates power, you see,
and that is not okay–
because I know deep in my bones,
you will be gone someday.
You might destroy my body now,
Go ahead, I can take it.
I’ll endure this pain and suffering,
Because guess what–
I will make it.
Copyright Becca Doss 2013
It’s ironic I’m writing this on a day when my Lyme brain has taken a semi-vacation. Meaning, I’m writing about Lyme brain on a day when my brain is thus far functioning fairy well. But it’s a topic I wanted to highlight, if for no other reason than to let my non-Lyme family and friends know that there is a reason I don’t always have an easy time communicating. Also, I think fellow Lymies may be able to identify with–and hopefully discover the humor that sometimes accompanies–the cognitive mishaps and mayhem I describe!
A brief note for those of you who are unaware: Chronic Lyme Disease more often than not manifests itself in a person’s neurological system just as significantly–if not more significantly–than it does in physical symptoms like joint pain, rashes, etc. The reason neurological symptoms are often more troubling, even though they don’t necessarily bring about physical pain like other symptoms, is simple:
I’ve yet to meet a Lyme sufferer who was not formerly a high-functioning individual. And the majority of Lyme sufferers with whom I’ve talked are very much like myself–type AAA personalities. When we are dealing with physical pain, our diminished capabilities seem more justifiable. After all, when your throat is so sore you can’t talk and your joints are so painful and stuff you can’t walk and your neck won’t move it’s “easy” to pinpoint these areas and say “Okay, there’s something I/others can physically see/feel/grasp as real that is causing me to not be able to function today. I’m not saying physical symptoms are easy to deal with–because we all know they aren’t–but accepting them as real (or particularly having others accept them as real) is easier because they are, in effect, tangible.
However, neurological dysfunction is a completely different ball game. Think about this:
My favorite thing in the world to do is public speaking. And at the risk of sounding self-assured, I’m pretty good at it. Or at least I was before Lyme stole my brain. I even identified myself as a future-professional-public-speaker. I loved it! I thrived on being in front of a group and sharing my presentations and personal story while also getting the group to interact with me as I did so. (The key concept here is “identity”)
The reason neurological issues are so daggone hard to deal with is because they make you feel like you’ve lost who you are as opposed to just what you do. Yes, it’s devastatingly heartbreaking that I can’t go figure skating right now (my other favorite thing ever), but that is an action I do, and while it is something that defines me in that sense, as an activity, it is a somewhat tangible entity I can latch onto and say “Okay, one day I will be able to do that again.”
It’s much more distressing to feel like I’ve lost who I am in a lot of ways–I’m no longer well-spoken (thankfully I can still sometimes write well, though!), I struggle with constructing and speaking simple sentences, and I have an increasingly hard time with word recall and correct context/meaning. If you’re having trouble picturing this phenomenon, here’s an easy-to-grasp, mild example from an average day:
Say it’s a Monday and the day before, on Sunday, I had attended church, and someone (on Monday) is asking a question about my weekend. I reply thusly:
“It was a decent weekend. I’ll tell you that I absolutely loved the sermon at church tomorrow!”
Obviously the correct word to use would be “yesterday” instead of “tomorrow” but more often than not I will find I’ve spoken the exact opposite of what I meant to say…and don’t even realize it! Other times I’ll reply with a sentence that my mind thinks is accurate but that actually had no relation to whatever topic is at hand. And this doesn’t even touch on the number of times I can’t finish a sentence due to either a.) severe word-stumbling/stuttering type problems or b.) inability to think of a word to say at all.
I haven’t even gotten into the severe issues Lyme causes when I’m just trying to think to myself (which are just as debilitating and annoying as trying to speak to others), but rest assured they exist–and they make up just one more rung on the ladder of “neurological issues caused by Lyme that make me feel like I am no longer the person I used to be.”
I do believe, though, that God can (and WILL) deliver us from all of this, Lymies. I’m claiming eventual healing and restoration not only for myself but for all of us who suffer. He’s done so much in my life already, I’d be naive to doubt Him now!
After all, I do get glimpses that show there must be something of my old brain left, because I can still recite/write the opening lines of the Canterbury Tales in Middle English (although I’m sure my spelling isn’t 100% accurate), a feat I had to undertake in college. Want proof? Okay, here goes nothing!
Whan that Aprille with his shoures soote
The droghte of March hath perced to the roote
And bathed evry veyne in his licour
Of which vertu engendred is the flour
And that’s that!
So this post, as every other post, is free for anyone to read/comment on, etc. however it may not be all that interesting to non-Lymies so beat with me. Lymies, on the other hand, will know exactly what I’m talking about!
So yesterday we had a pretty big milestone in the Lyme awareness field! Katie Couric hosted her talk show at 3pm EST (for most people that was the time) and the first third of the show was dedicated to talking about Lyme Disease.
I first want to back up and mention that at 12pm EST Katie facilitated a twitter chat during which she tweeted from @KatieShow and anyone that wanted to take part simply had to hashtag #LymeBigConvo in their tweet so everyone else who was participating could see it. The chat was a great experience–Katie really has become an advocate for us, or at least has become a public figure who is helping give us a voice. If that doesn’t mean advocate, well, I don’t know what does.
Anyway, on to the show. I’ve been speaking with many Lymies who were very hopeful about the show and who ended up being disappointed/frustrated/angry/mad etc because they still feel the show didn’t do justice for all of us who are suffering. Let me first say if you’re in this group of people. I can definitely see where you’re coming from! There were moments, particularly when Dr. Halperin from the IDSA was speaking, when I wanted to scream at him (okay, maybe I actually did scream at him here from my house….) because he was just on there spreading misinformation galore, just like every other CDC and IDSA based talk show appearance on Lyme.
Among his inaccurate statements were the following:
“Well 95% of Lyme cases are found on the Eastern seaboard” (LIES)
“The tick has to be attached at least 24-48 hours to transmit any bacteria” (LIES)
“The tests are, um, reliable” (BIGGEST LIE YET)
And these are just a few of the ones I remember without rewatching it. So yes, Lymies, we all have a reason to be very angry–HOWEVER we should direct our anger to Halperin and the entities that enable him and his ignorance (the IDSA, CDC, powers that be). Our frustration cannot be taken out on the show as a whole. I know none of us were upset with Katie herself but we must try to resist slamming the show for not doing an adequate job for the cause.
Because then enters Dr. Horowitz, whom I’ve officially deemed “the man!”
Horowitz did an excellent job speaking up for the truth and advocating for us who deal with chronic Lyme in the time he was given. He even got in a few excellent comebacks directly to statements Halperin had made. And there were two chronic Lyme patients who had seen Dr Horowitz and who we’re talking about their success stories! In my mind, we definitely had the upper hand over Halperin et al as far as support and believability. (Not to mention the seating arrangement had one of Horowitz’ success stories s rated directly next to Halperin in the audience! How funny was that?!)
I fully believe Katie would personally preferred to have the entire segment be about chronic Lyme and raising awareness about that. But we have to realize that while changes are being made (slow, slow changes, but changes nonetheless), there are still guidelines in place that, while they’re complete bogus and need to be overhauled a LOT, mandate wonderful people like Katie to include all sides to controversial topics they air on their show.
Overall I was very pleased with the coverage we were given on Katie’s show yesterday. I think that any non-Lymies who were watching it just because they happened to turn it on were probably able to discern which doctor was speaking truth and was truly an advocate for patients (Horowitz, obviously).
And the big thing is that we got the coverage in mainstream media at all! Yes, I wish the segment had been longer, but 24 minutes is no snooze compared to the usual coverage that lasts maybe 5 or 6 minutes, rarely longer, and is often laden with misinformation. So while we didn’t get as much time devoted to the cause as I think we all would have liked, I do think this was an excellent step in the right direction for awareness and hopefully by opening the dialogue in this format the discussions will permeate more and more homes in America….and then continue tor each the higher ups and higher ups until we are all able to get the care, attention, seriousness, and treatment we deserve!
Thanks for reading!
Okay, so on nights like these when I can’t sleep at all, instead of lying in bed and (unsuccessfully) willing myself to sleep, I choose to write. The following is a rough sketch of a poem I just wrote in a moment when I was experiencing three main feelings: 1.) My heart has been aching to spend just one more day with my great aunt that went home to Jesus in February, 2.) I’ve wished more times than I can count that we would’ve had the answer of Lyme and friends so she would’ve at least known the specific battle I now fighting instead of what we formerly deemed “mystery illness X”, and 3.) I’ve desperately wanted to explain to her that even with as horrific as Lyme and friends are, one blessing that has come with this battle is the fact that the eating disorder I’ve struggled with for 10+ years has (at least for now) been out way on the back burner as I focus on what I need to do to win this battle against these diseases (Lyme, etc) that are stealing my quality of life every day.
The poem is thus far untitled because I’m really bad at titles and can’t come up with one right now. Also, I don’t usually go the rhyming route with my poems, but that’s what happened with this one so if it seems forced at any point just go with it.
This is for you, Neni.
There are so many things I want to tell you,
and many more I want to ask.
Can you see what I am going through?
Are heavens windows made of glass?
I know you’d like to be with me
to talk and hug and cry.
And I know you’re up with Jesus
but still I sometimes wonder, why?
Why did God make your time to go
precisely when He did?
There’s so much I want you to know–
I’m still your little kid.
I’m fighting different monsters now–
they finally have a name.
I only wish you had been here
when all these answers came.
My days are mostly filled with pain.
Exhaustion’s sure abounding.
And nowadays my once-good brain
is constantly confounded.
I find myself quite frequently
still picking up my phone
to dial you up and fill you in,
but I know no one is home.
I want to tell you good news, too–
I know you’d like to hear–
that with this new war I am in
other fights have disappeared.
All you wanted for me so long,
was for my smile to resurface.
And that’s the proof God’s given me
that this battle has a purpose.
While my body suffers constantly
as I search for how I’ll heal,
my smiles, though few and far between
are finally, once again, real.
And guess what? Even with the violent
waves I’m forced to tread,
I’ve found joy where it was missing too long–
in autumn leaves…and pumpkin bread!
Of all the people that I love
I’d want you most to see–
That for the first time in 10 years,
I’m taking care of me.
My journey with this newfound foe
is still long in the making.
I’ve so much further yet to go–
But there is no mistaking–
I’m going to fight, I’m going to win,
like I’ve proven I can do.
And all the while I’ll be holding in my heart
the love of you.
I’m counting on you, Neni,
you have to understand–
part of the reason I get through each day
is because God lets me keep holding your hand.