I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

Sunday
Nov042018

Mold Mania

Ahhhh...the mold wars just got more personal. Recently, I was diagnosed with CIRS (chronic inflammatory response syndrome) as a result of mold. That's a mouthful. I've been reading/skimming on and off about mold for years as it's a topic that comes up when dealing with Lyme. I have to admit--I'm not 100% a believer. I know this will cause a lot of grief among the "mold-knowledgeable" community but here are my issues.

1. There is no freakin' way I can afford to leave my house OR to remediate. My house is close to 100 years old and our money has gone to medical bills (one deep, dark hole that will never be refilled.)

2. I have read too many times about people leaving behind ALL of their belongings as they claim that everything that is porous can be affected by mold. I won't do this. 

3. Heck, I don't even want to stop eating peanut butter. I've given up dairy, gluten, etc., etc. and I'm tired of making my life so different. 

4. I am NOT going to strip off my clothes and shower every time I go to someone else's house or my place of work or a store and then return home, so as to prevent mold from entering my safe space.

5. I am not moving to a dry area. Even the most arid of areas are said to have some mold. I prefer not to contend with scorpions and snakes. No thanks, but ticks are deadly enough. 

6. How much of this is real? Seriously, I know many people question Lyme and I roll my eyes at those people, much as some of you are rolling your eyes at me now. But it's a monstrous suspension of disbelief for me to believe that yet one more thing is making me sick and/or preventing me from being well.

7. Even testing the house is pricey. And everything involved with mold is EXTREME. Which makes me doubt. I don't do extreme. Usually.

I have recovered from Lyme and co-infections. My blood tests are much improved. I can live with residing symptoms, but it's hard to deal with the everlasting fatigue which comes and goes.

My medical practitioner thinks that dealing with mold is the key to helping me fight off past infections (like EBV.) But on the mold/symptom questionnaire, I interestingly didn't show enough symptoms. On a visual online test, I came out at 80%. That's pretty good, right? So are we merely looking for something to blame my fatigue upon, especially as I live in an old house with a basement that leaks? Would it be safe to say that EVERYONE has CIRS?

I know that some of you are totally disgusted with this and are probably shouting at me to get out of my house. But to where? Who says the next house doesn't have mold? My friend tested her house and it was FINE! But when she dug up a room, she found mold anyway. 

So my question is--how do I live with the mold that is going to be in my life? How do I change MYSELF so I can tolerate it? I'm supposed to be on Welchol and a coconut charcoal (have started slowly as I just caught a virus.) There are many of us--families, parents, kids--who no longer have the funds to fungus-free our homes, who cannot move, who cannot replace every piece of furniture and clothing. In the mold support groups (from which I'll probably be tossed), it's black and white--discard everything, leave. 

Maybe I'm not sick enough to do this. Mabye I have mold at work, in which case I wont be able to leave it anyway. Maybe I just wanna eat the Reeses peanut butter cup from Halloween.

In all seriousness, I need a different approach to mold. Any suggestions? 

Monday
Oct082018

Reclaim Life

 

I'm ready to blast out. 

Reclaim life.

Be bold, take an adventure, make my move, my mark.

Not be afraid that life events will drag me back down again. 

Because, oh, they will.

They will pull and perseverate and gnash their yellowed teeth until

I let go and drop to the floor once more

roll myself into a ball

cocoon myself in my home, my bed, my quilt

not take calls

but the calls have stopped anyway, haven't they?

and it's not so easy to be a ball

it does tend to hurt the back, the joints, the neck, the grasping hands around the bent knees

but it's also not so easy to bend away from that petrified position 

once atrophy has set in.

How many freaking knocks can I take, anyway? 

I stand up and I'm punched in the stomach.

I bend over and I'm thumped on the back.

I strike out and my arms are slashed. 

The pain keeps coming, from all sides

until I learn to expect it

and that's when it stops, when I inch up, ever so slightly,

peel back the quilt, sit up in bed

but just when I start to trust the calm

pain returns, doubly so

[because it's tricky 

and it's not there to be mean

IT JUST IS THERE

Why me? I ask

Why me? You ask]

But I'm done

I've played the game

Been hit with

sick child/ misunderstanding doctors/ challenging school district/ humongous medical expenses

family strife/ my own illness/ more medical bills/ horrible credit card statements/ finding doctors

missing work/ disbelieving family members/ clutter/ more medical bills/ lost childhoods/ sadness/ too much stress

 

I take a breath

Maybe I understand my kid's fatigue better because I too suffer

But I will recover

I strive to be strong

to be back on my bicycle

and I do

I do 

I do recover

I am strong

I keep going

I am the example

I can do it

So can you

So can you

It becomes a mantra

 

I rediscover my need to not just stand up straight

but to stretch my back and challenge my legs

to be with friends and talk about something other than illness

to laugh

to sit in the sun

to laugh again

to hug others

 

to lie on the beach

and not be pulled out to sea each time

but to fight the undertow

I fight

because that is what I have become

I compartmentalize

because that is what I must do

I find pleasure in moments

because that is the way

to survive

and now 

that is no longer enough

I have no control over the fate of my child

over the course of the disease

I have no control over my own internal organs that are affected

but I will forge ahead 

and begin, once again, to dream

I wanted to travel, write, experience LIFE (not sadness, although that is a HUGE part of life, to be sure, and once upon a time, I believed that sadness and agony were crucial to a good artist/writer but I swear that I've had more than enough to write a zillion novels by now)

I need to remember my dreams

remember who I am

before this

and after this

and even, during this

I am exploding out of my cocoon, grasping back the life that waits

telling my children to follow my example

for through my strength they will bloom

there are still moments of

grievingstressanxietydespairdesperationdepressionrollintoaballdontletmegohugme

and

lifesuckswhatdidIeverdowhowasIinmypastlifewhywhywhy

There are more moments of

I can do this despite

I will go beyond

We will 

I hand you my ball of strength

it can be shared like fire

Use it well

and pass some on

 

Dedicated to a special friend, to all my special friends, the kind who will pass this energy back when I most need it. With love,

Lisa W-K

Friday
Aug172018

Tired, Just Tired of Lyme

I'm tired.

I'm tired of the world not understanding chronic Lyme, of doctors disrespecting the other doctors who treat it, of doctors saying it doesn't exist. 

I'm tired of family and friends questioning the amount of money we've "thrown" at treatments that haven't worked or maybe worked only for a short amount of time.

I'm tired of family giving up on us. I'm tired of watching every word I say. I'm tired of not having much to think about besides chronic illness some days. I'm tired of trying to convince someone else that chronic Lyme exists. I'm tired of arguing about disease and transmission.

I'm tired of there being no damn cure. Of there being no good testing. Of doctors with conflicts of interest or simple ignorance arguing against the evidence of the persistence of Lyme. I'm tired.

I'm tired of relapsing, of not always being filled up with energy. I'm tired of not being 28 anymore, with my 28-year old's high energy.

I'm tired of the financial struggle; hell, we could've had a zillion vacations or purchased a summer home in Tahiti instead of dealing with this.

I'm tired of the emotional struggle, of seeing kids fight before they're even fully grown, while their peers race through the normal hurdles of life. 

I'm tired of people you thought were supportive suddenly questioning everything you believe.

I'm tired of pretending for moments at a time that all is calm and OK when it won't be in five minutes.

I'm tired of putting on that face, you know the one that you wear when you're at the grocery store and someone asks how you're doing..."Oh, fine, how are you?" I'm tired of wearing that face even for family members. And I'm tired of not spilling all to family and close friends so that they have a true picture of what is going on, but if I were to spill it all, there would be judgments. 

I'm so tired of being judged. And we are judged. Everyone who is chronically ill is judged. It's yet another prejudice that underlies our culture. We become the "them." 

I'm tired of having a happy day only to return to grief. I'm tired of coming home. I'm tired of struggling for years.

I'm tired of asshat doctors saying that PANS doesn't exist or it can't happen to kids who have autism or it must have a sudden onset or must only be caused by strep. Even if these issues don't pertain to my kids, I'm tired of them because they affect people I hold dear to me, other parents who are TIRED of this.

I'm tired of being a pioneer. I'm tired of feeling alone and forgotten.

I'm tired of giving up my dreams. I'm tired of looking older and losing precious time with my babies. I'm tired of missing out on normal childhood fun. 

I'm tired of explaining myself. I'm tired of forgetting vocabulary and I'm tired of feeling cornered when attacked and unable to come up with the correct language and ideas.

I'm tired of not being there for friends as much as I would like to be. I'm tired.

I'm tired of fearing that there is worse. I'm tired of fighting for treatments, trying to figure out the right doctors. I'm tired of the huge expenses and the fees that some doctors demand. I'm tired of not going to all the right doctors anymore because we're not billionaires.

I'm tired of being sad, of questioning the meaning of life, the significance of our existence and beliefs. I'm tired of praying and wishing for dreams that don't come true.

I'm tired. I'm grateful.

I'm grateful for the warriors who continue to find the words and fight. 

I'm grateful for the people who add to the list of studies done to chronicle chronic Lyme.

I'm grateful for the actors and athletes and politicians who took a bite out of a lime to increase Lyme Disease awareness in the #LymeDiseaseChallenge. I'm grateful for Yolanda Foster for kicking it into gear after 5 of us moms across the country launched it after months of intense work and planning. I'm grateful that it continues, several years later although I'm no longer as active with it...because I'm tired.

I'm grateful for the scientists who continue to study the persistence of Lyme so that they can create a cure.

I'm grateful for the doctors who put their work on the line so they can treat it, for the doctors who look beyond an erroneous blood test to diagnose Lyme, to the doctors who struggle to see the big picture.

I'm grateful for friends who feel the same way and tell me so.

I"m grateful for all the writers and advocates in our community who just don't quit. I'm grateful for people who feel it's their life's work to make change. 

I'm grateful for small moments of tranquility and large moments filled with laughter. 

I'm grateful for wine and chocolate and bicycling and yoga. I'm grateful for happy dogs, beautiful sunsets, music and books that let me escape.

I'm grateful for the reaching hands and words and love from people I've met often or haven't even met in person.

I'm grateful for doctors who say that everything will eventually be OK.

I'm grateful for my own personal need to make change so that others don't endure as we have done.

But I'm tired too, and at times, I just need to stop. And I am tired of feeling tired.

 

Friday
Jul272018

The Sunny Side of the Street

There exists two sides of the street: the sun-bright, well-walked one with colorful storefronts and restaurants from which music spills through open windows to umbrella-covered tables. The sidewalks have well-designated lines in the shining concrete so that you can easily step from one block to the next if that is your thing. All is swept clean daily. Doors are open; you are welcome everywhere, and everywhere, people greet you as an old friend.

And then there's the other side--shaded, hushed--with dark alleys leading deeper into shadows. Although there is some pedestrian traffic, this side is not popular; after all, solemn offices and a few businesses reside in the upper floors while the stores below offer bongs and cheap tchotchkes or sport "Vacancy" signs. 

Just one crosswalk leads from the sunny side to the shaded side and it's one way only; all who find themselves on the shady side have either wandered away without purpose or been shoved out into traffic and forced to skirt danger until reaching the parallel sidewalk. 

While it takes but seconds to switch from the sunny side to the shaded side, it's a tedious, tortuous return. If you do manage to pass back to the merriment and vivacity of the first side, sad, frustrating, angry memories from the shady side will color each new experience. You will notice for the first time the plastic flowers embellishing the restaurants' decors, the too-sweet scents of passing women, the small crack in the corner of a window that is mostly hidden by a curtain.

Whereas in the sunny side, you had not a care in the world aside from purchasing the perfect gift for X or those new sneakers you just HAD to have, on the shady side, you cradle worries larger than yourself. Survival no longer means deciding between two trendy restaurants for your lunch. The world is racing at you from every direction in 3D and it's cruel. You must negotiate the obstacles coming from every direction and you fight against the ever-strong riptide that threatens to pull you under. You have left behind family, friends, aquaintances, to focus on saving yourself, or perhaps, as is most often the case, they have left you. 

Marooned on the shady side, you mourn the loss of gaiety, spontaneity, frivolity. After you sit for the required time allotted for grief, you notice others around you; they suffer as well, so you reach out, try to help. Aiding others somehow brings you comfort. For moments of time, you forget your woes. You find common bonds with fellow shade-prisoners; they embrace you as family might. You realize that this side is much more populated than you ever knew; in fact, most of the world is hidden here, in the alleys that were once invisible to you. 

Can you ever return to the light or are you destined to steep in the sadness of shade? You realize that you took for granted the light and in doing so, refrained from noticing the shade; even if you studied the shady side as an intellectual exercise, you could not have known it as you now do.

Was it something you did that caused you to end up here? Was it Karma, Fate, just pure bad fortune? Is there NOTHING you can do to return?

You are given glimpses of the sunny side, maybe in your dreams or at a small space between too-close skyscrapers that lets in light, and you wish to reside there once more. Yet the shade has become a permanent tenant in your heart, your being, and will always be with you going forward, wherever you venture.

Once you cross away from the sunny side of the street, everything shifts like a kaleidoscope. You must learn to live with the underlying sadness and focus on your new land and its people, for you may leave the shade but it will never leave you.

Saturday
Jul142018

Bicycling as a Metaphor

As I passed a man on the bike path the other day, I sang out, "On your left" but added, "But probably not for long as I'll fatigue and you'll pass me."

I did lose speed. And he did pass me. And all was OK in the universe.

Only because I made the disclaimer.

Just a few weeks ago I passed four young men and there was no way I would let them catch up to me, only to pass me again, especially after I heard one of them say to another, "Don't get beat by a girl."

But then, days after, I relapsed and have been fighting to get back ever since.

Now I awake in the morning and lounge in bed for half an hour before stumbling my way to the bathroom, ankles twinging. Fatigue wraps itself around me like a lead X-ray apron. Electricity zaps my legs. 

Then, I finally had my reprieve, my first good ride in weeks. As a I passed a woman in bicycling gear, I wondered: how many miles had she already been riding? Was she healthy? While we rode the same bicycle path, we had different starting and ending points, different journeys, different stories.

Years ago, I would not have asked these questions when passing another cyclist. Years ago, I envied a friend for having the perfect body, the perfect job, the perfect brain, the perfect money. Only later did I discover that she held the same insecurities as I, perhaps even moreso. My godmother's wise words of, "Don't compare your insides to someone else's outsides" gain more significance daily.

Once, it was about winning. Winning my own private race, that is. Beating my own previous time. Pushing myself to my maximum. Adding just one more, no, five more miles. 

Today it's about doing. It's about showing up. It's about my intension to do a 30 mile ride this summer. It's about hoping that I'll be able to achieve my goal of a 75 mile ride when I'm 75 years old. I don't know what I'll endure in the years leading to 75. I don't yet know all the steps I will take to ensure that I will bike my age.

In life, we don't know how far someone has come, or what ordeals they're facing. So maybe I'm super fast in my first five miles but slow after. Maybe someone else has already ridden 45 miles or has just recovered from a heart attack and is back on the bicycle. Maybe I'm the one who cannot cycle the way I did just a month ago because my chronic Lyme has roared back to life after being chained to the cellar for a year. Maybe that guy bicycling 5 miles just accomplished something incredible.

Not riding rapidly can have benefits. Last week, I clicked out of my pedals to take a picture of an undaunted deer that happily munched leaves on the side of the path. I smelled sun-warmed plants and absorbed the light from sun-starry waters I passed.

Today, I came to an obstacle: a tree had fallen across the path. Two other cyclists stopped. One man joked about limb-ing under it. A woman asked if we could move it. The three of us tried but it was heavy and still grounded on one side, so i picked up my bicycle and carried it over. 

Just another obstacle in life, easily surmounted in the whole scheme of things. Why worry about one fallen tree blocking the path when I can easily climb over?

When I returned, it was gone. Someone, perhaps the guys working in trucks to keep the path maintained, had removed it. And I barely noticed until the area was behind me. 

Sometimes I think I need to be grateful that I have two hands that work, that I can breathe through my nose without suffering from a cold. I need to be grateful for all of the things I take for granted until I get sick or hurt. When I have a bad cold, my nose/head/sinuses become the largest part of my body. I need to be grateful, for today, that they are relegated to their proper places.

When riding downhill, I have two choices: shift and tackle the hill, watching my speed pick up. Or coast, relishing the downtime (pun intended.) 

It's summer and I'm off from teaching. Do I relax during my downtime? Catch up on my sleep? Or do I use this time to complete all the projects I have not had time to do all year? Work on my book? Play my guitar? Re-do the bathroom?

Do I even have a choice? On days like today, despite the sun glowing goldenly, I feel the heaviness of headaches and lethargy, as well as the angst of not accomplishing anything worthwhile. I haven't even taken the puppy out.

But I'm here, remembering the glorious rides, that wonderful feeling of having strength in my legs, the lack of pain in my back and feet when I rode. I tell myself I'll revel in that again as long as I persevere and believe.

Life. It's about flexing those muscles and pumping uphill or trying to catch as much speed on the downhills or coasting....