Kara Lynn .NET Blog

I have absolutely no one in this corner with me. I’m truly in it alone. Fuck! I cannot gather up the words in my disarray that overwhelming circumstances have scattered. I’m all over the place, gathering, gathering up the details in my thinning, but desperately loyal arms. What did anyone mean when they said “If there’s anything I can do…”? I don’t need a sympathy card or a casserole. I need someone in my corner. I don’t need someone to fight the disease. I’ve been elected to that responsibility. Can anyone guess the kind of bureaucratic waters I am forced to navigate (if I’m to survive), when I should be spending this precious time and energy with my so deserving baby boy? I’m alone all day with my son who has no siblings. He has me. But I have to somehow do it all. I love to plan each meal, feed him, dress him, change him, potty train him now, teach him to speak and walk and to eat by himself. But between these things, I must plan for my incapacitation, my immobilization, my expensive medical needs, my personal care needs, my needs for absolutely every little thing, and who the hell will fill in for me in getting Aiden all of his needs met… when I’m not able? I can’t pay for this care? For any of it. I’m so exhausted and overwhelmed. I’m stretched and maxed out physically, mentally, financially. There are lawyers to consult and hire, Aiden’s future to protect now, not later, insurance companies to fight, and I have no one in this corner with me. It would be so easy to ignore the future I’ve been dealt and just live happily in the present, but it’s not my future I’m concerned with… it’s Aiden’s. So, no… I cannot know my 2-year-old son stands to lose so much… his mommy and his home, and go gently with this flow. I have so much to do to assure my care and Aiden’s too, but I am only one person, and ALS sits heavily on my every move. How will I do this all without disintegrating? “If there’s anything I can do…” I have a list.

-kara

It was one of the best days I can remember. Last Sunday was Father’s Day, and Lew, Aiden, and I spent the day adventuring. First we all went up to the Catskill Animal Sanctuary (CAS). This was our first visit to the sanctuary. It was also one of the hottest days, if not the hottest day of the year so far. We brought a cooler full of food and had lunch under a tent at CAS before we took the tour. While in and around the barn we enjoyed the company of one very happy and absolutely adorable freely running baby pig. His name is Franklin and Aiden thought he was “some pig!” One of Aiden’s favorite movies is Charlotte’s Web. I think he must have thought we were in the presence of Wilbur himself! The delightful little piggy who was rescued from certain death, and who now rejoices in sunshine and the company of friendly animals, tireless volunteers, and adoring visitors at his new home at CAS.

After meeting many of the animals at the sanctuary, we boarded the van and cranked up the AC. As we cooled off, we headed down to New Paltz. We ended up at The Bakery, one of Lewis’ favorite spots. We sat inside, out of the smoldering heat. Lew and Aiden had cold juice and I had a soy cappuccino. Aiden really enjoyed himself in the kid’s corner upstairs at The Bakery where they had all kinds of wooden toys and a wooden miniature store front with a play cash register. It provided a good opportunity for Mom and Dad to sit back and relax too!

After coffee and juice, we drove the van down to the rail trail (it was too hot to walk through town). We got on the trail and into the shade quickly. The walk was relaxing, but when we came to a long stretch of shadeless trail we decided to head back. It took some arm-twisting, but while we walked I convinced Lew that we should drive over to Minnewaska if only to stick our feet in the cold lake for a moment, or feel a cool breeze roll in off the water.
It was late in the day when we got there and it was so much cooler than it had been in town. Aiden marveled at the giant rocks that walled some of the path down to the lake.

We relaxed and played on the tiny beach for a while. The coolness of evening around a mountain lake was enough to get giddy over.

Finally, Lew took Aiden into the water for some splashing, giggling, and fun. After the boys had enough silly water play, we headed back up toward the parking lot. We got Aiden’s dinner from the cooler and fed him on one of the great rocks in the big grassy area by the van.

With Aiden all fed, and very tired out, we headed back to town so Lewis and I could finish the day with a nice dinner out (something we rarely get to do). Aiden fell asleep almost as soon as the van started moving. When we arrived and parked at the restaurant, we lifted him out of his car seat and into the stroller. We were sure he would keep sleeping, but we were wrong. He woke right up, big grin on face, ready for our next adventure! What a trooper! We all went inside and Lew and I had a delicious and large meal while Aiden enjoyed just being there, with us. He stayed awake and cheerful the entire time. A perfect ending to a perfect day.

-kara

I will owe nothing
as I exit this establishment.
I don’t like debt.
I’m paying on the way out.

It’s raking me raw.
What the hell did I do
that it’s costing me this?

I’m giving up everything
in lump sums,
an accelerated payoff.

I’ve given my hands,
my arms, my shoulders, my voice.
As interest, they’ve taken my independence,
my power, my dignity, my freedom.
They get all the best,
and I shed it in horror.

No one is sympathetic,
and no one is willing
to lend their own hand, shoulder, or voice.
The burdens lie in my lap,
weighting me down.
I will sink fast now.

-kara

Time will tell, they say.
Time is telling me now.
Time is letting me know
that I’m not welcome to go along.

The stilled life stands powerless
while seasons change,
while day turns to night,
and everyone else goes somewhere.

Tears are everywhere
and no one hears them.
The body slumped,
a pile of wreckage
with the bursting soul inside.

People scatter,
put distance between us.
I am surrounded by vast and empty distances.
They say we all must die alone.
I am still alive.

-kara

Why didn’t I make it clear?
Why did it seem to all
that my gate was open wide?
Why did I unveil all that seeded in my heart?
Why did I invite the treacherous,
who would tread upon the life I meant to grow?
Why didn’t I keep my head aimed low,
tending flowers?

Why did time after time,
I give thoughtfulness
to those who would not possess it?
Why did I expect full truth and full compassion
To start growing in souls carved of stone?
Why did I winter over in pain,
dying among crushed and ruined flowers?
Why did I rise to rebuild myself in spring,
when over and over, they would come again,
without regard, without respect,
to block the sun I long awaited,
to steal the rain I patiently collected,
to stomp the surface as life emerged,
to silently destroy the design intended here?

-kara

Ahhhhhhh… This was a productive weekend!

Lew, Aiden and I have lived in this house for just over a year, and with so much turmoil in our lives…

• Lew starting a new job after a bumpy road of working many years for a printer that died a long slow death, unemployment, and a chilling search for a new job in printing… within a reasonable commute.
• Both of us selling our houses and merging together here with the purchase of this home.
• Lew and I learning to live together. The ups and downs of this joint life are finally settling as we really begin to understand each other on a much deeper level. With this understanding, each of us has developed a higher respect for the other. Our lives are so much clearer now.
• My trip to the ER followed by a four-day hospitalization for breathing problems.
• My awful diagnosis of Amyotrophic Lateral Sclerosis (ALS).
• All the medical tests including multiple painful EMG (electromyogram) and NCS (nerve conduction study) tests, and a spinal tap.
• Several trips to the city for ALS diagnosing and clinic appointments.
• Losing the ability to work, and saying goodbye to my job and my freelance graphic design business.
• Applying for disability… a long and tedious process… and almost as painful as the NCS!
• Hiring a lawyer who specializes in elder law even though I am far from elderly.
• All the bureaucratic tangling with Aiden’s Early Intervention and the DDSO (we’ve been so much better off, and Aiden is progressing much more now that EI is out of our lives).
• And all the problems that keep surfacing about this house (the cosmetics from the “get ready to sell” makeover are wearing thin fast and revealing problem after problem).

And now, Finally, FINALLY, I have been able to sort through some of the gigantic piles of clutter that have taken over our house. Much of it was mail and papers I needed to go through. Slowly, so slowly I’ve been getting through that stuff.

Additionally, two big pieces of my respiratory equipment were in the living room surrounded by more clutter. I had them in the living room because I use those two machines daily for treatments and maintenance. Since I’m in the living room (really Aiden’s play room!) most of the time, I wanted the machines there so I could use them while watching Aiden. As it turns out, all the clutter in the living room was making it hard to use them anyway. So I’ve moved them into what I’m now calling my “treatment room”. It’s the third bedroom. I have some respiratory paraphernalia, and my infrared sauna in there. My brother bought the sauna for me after many weeks of research on toxicity and ALS, and the role of infrared in detoxification. My brother is a big advocate for me and he’s not about to miss a chance at saving his little sister. An added benfit: the sauna has been the only thing that has given me relief during severe muscle spasms! I get lots of pain relief by using the sauna.

Today when Aiden went down for his nap, I went into the treatment room and did my stuff. It was great! No clutter! I relaxed in my rocking chair, reading, while the vest did chest percussions, keeping my lungs free of clinging junk! I also used my cough machine to expand (or top off) my lungs. It’s something the famous doc in New Jersey taught me a couple of weeks ago when I went down to see him. He trains people with neuromuscular conditions to breathe on their own and to keep in good respiratory health. More about that in another post later.

Anyway… end result of all the work I got done this weekend is: I felt ORGANIZED for the first time in about two years! Tonight I ate dinner on Lew’s big oak table that used to host my machines and tons of mail, papers, things to deal with that I never have time for. Lew and Aiden ate in front of Lew’s Core Duo iMac. They wanted to watch one of Aiden’s favorite videos. Oh, and Lew hung some curtains for me that had been piled on the big oak table since last fall. We still have tons more to do, but the de-cluttering has to happen first. It’s not even that I’m a collector or a pack rat. Yikes! I hate bric-a-brac and really don’t have any. Who wants to do all that dusting?! What I have is a lot of papers, stuff that needs to be filed (but I’m well on my way with that now), computers and all the stuff that goes with them, my cameras, art supplies, gardening stuff… well, I do have many interests!

My goal… to live in open space… to walk through a room without making twists and turns to maneuver around things. I love the idea of minimalism. If I had more storage area and cabinets here I think I could get my minimalist feel… except of course where Aiden plays. He has his toys and things to climb on, ride on, roll in… I would never take those things away. Would be nice though if we had a playroom or family room so all of it didn’t have to be in the living room… which is also our dining and computer room!

Ahhhhh… Tonight I sigh, sit back, get ready to post this entry, and wait for my sweet Lewy to come home with the yummy and cold Tofutti he just went out for. When he’s good, he’s good.

-kara

Written on 5/25/06, posted 6/1/06

If not for my son, I would vanish into the woods right now and lie down and wait to die. And I would, perhaps, do just that… die. Or another perhaps: All the snares that entangle me might just loosen, unwind, and fall like a dead and crumbling thorny vine from my shrinking flesh. I might then, rise and face the out-of-woods, return, and live some more.

Today, I stopped looking for the strength. Not the strength to fight ALS… I have that. No, I mean the strength to fight through every situation, every interaction, all the dealings of “ordinary” life. It seems circumstance is what I am living, instead of my life.

No matter how I try to simplify things, the debris and bramble continue to gather at my feet, snaring, tripping, tangling, and owning me. I want to kick this shit away! Get it all out of my life! Must there be a bloody catch for every want or need?

It seems, as long as desire lives within me, circumstance will wrap around me. Obsessed by the fragrance, the sticky sweet allure, it cares not for my dying breath as it rapes and rapes and rapes. It cannot hear me suffocating. It finds only annoyance in my struggle as it takes hold and claims me. It moves through it’s cold and heartless motions as if I am not at all a life… as if I never had a mother, a son, anyone who loved me… as if no one would notice or care… it spits and steps on me as if no one is looking.

Circumstance has become big and greedy, and is now all over me. It’s tentacles reach from the trenches of ugly society, finding all the hearts where desire lives. I have left my life somewhere on hold. It survives barely like a whisper, waiting, hoping I’ll return to it before the end.

I think of dying… having spent my time, my gift, fighting under the whip of circumstance… having left my life somewhere in waiting, believing in the unfulfilled promise of my commitment and return. I am so tired of fighting the monster that has grown so grotesque. It’s a fight I have been tricked into instead of living.

-kara