by Nicole Hite
“I’m terrified, Jo. I know what’s coming and I don’t know if I’m strong enough.”
I watched her eyes fill with tears, while putting my mug on the coffee table. Curling into her lap, I let the tears flow. Jo rubbed my back despite the fact that I was soaking her pants. She allowed me to truly feel the horror and devastation of the matter.
“I know, baby. I know. Let it all out,” she stated as I heard her own words hitch in her voice.
When I woke it was sometime in the afternoon. I sat up confused as to what day or time it was. Then it hit me, not even sleep would make this nightmare go away. I had cried for so long and so hard that I eventually passed out. I hadn’t done that since I was a toddler.
“Hey there sleepy head,” Jo chirped as she stoked the fire. Placing another log on, I watched the firefly embers fly out of the charred pieces of wood.
“What time is it?” I yawned.
“Almost three in the afternoon. You’ve been asleep for a good portion of the day. I didn’t want to wake you.”
“Man that felt good. I haven’t slept like that in a long time,” I said.
“I was cleaning up around here and noticed this had fallen out of your bag. Where did you get this?” Jo asked as she extracted the paper crane from her pocket.
“Oh nothing,” I tried to blow it off, yet still reaching for the creation.
“Hell no. I want details. Does it have anything to do with that Lee character – the guy from the license?” She smirked, hoping the topic would bring on a better conversation then before.
“He was just being polite Jo. He said I needed a little work…”
“Ohhh?”
“…under my hood”
“Uh huh.”
“…of my car, silly.”
“I’m sure that’s not all he wants to check out,” she smirked with raised eyebrows.
“Jo, this isn’t the best time to be trying to date a guy,” I flinched.
“Why not?”
“Umm, maybe because I just found out I have a terminal illness. Is that not a feasible excuse?”
“Excuse, yes. Feasible, no. I know this situation isn’t exactly ideal, but you can’t let it be the wedge between you and still living your life. Sure, it sucks. Correction, it really fucking sucks, but you still have a hell of a lot to do and accomplish, baby cakes.”
She was right. Fuck, I hate it when she’s right.
“But what if it gets serious and I end up getting attached. How am I going to explain to him that if he truly cares for me, he’ll have to endure the most excruciating breakup of his life? I could have prevented that too. How is that fair to him?”
“Woah now. You just went from phone number and a date to marriage and a funeral. You need to slow down and take a deep breath. No need putting the cart before the horse. Maybe this is exactly what you need in your life – a distraction.”
“Ugh, I don’t know. I need to get a handle on these emotions first before I attempt to find a ‘distraction’.” I motion with quotations.
“Okay, I agree. In your haste to leave, Dr. Mather gave me some reading material I think you should look at. I’m not saying now, but there are meetings for individuals in your situation. It might be worth having a looksy.”
“I’m not sure I’m ready for that just yet. I mean, I haven’t even told my boss,” I said hesitantly.
“Well, when and if you are ready, I will go with. They state right here you can bring as many people as you need if it helps.”
“Thanks, Jo. I’ll let you know when I’m ready.”
I had no intention of going anytime soon. The thought of being in a room with people who were in the same boat or progressed through their disease was depressing. I’m already a mess, why the hell would I subject myself to further torture?
No thanks!
Three weeks had passed quicker than I had imagined. After breaking the news to my boss, I was emotionally drained. I had finally gotten to the point where I could be around people in public without having a complete mental breakdown.
I had a second opinion, where he only confirmed my prognosis. The second time around didn’t hurt as much. Still fucking hurt, but definitely didn’t hurt as much. The second doctor’s prognosis was a little more uplifting and a little less sad. After the initial ambush, I was never going to an appointment alone again. Not that it could get any worse, but I refused to be a victim again.
“You know Kat. This never gets easier having to tell someone this news,” Dr. North stated as he cupped my hand. “I’m usually a good judge of character and I know you are a wonderful person.”
“Thanks, Dr. North,” I stated with judgment in my throat.
“It breaks my heart having to tell young people this news. I mean, why couldn’t some other asshole down the road get it. Leave this horrible disease to those people, right? But you, my dear, you are a warrior, I can feel it. I know I’m the second opinion, but please keep me informed.”
There was something in his very demeanor that put my soul at ease. I had a new found confidence I thought I had lost. I may be losing this battle, but I couldn’t give up altogether. People still needed and relied on me.
I gave Dr. North a huge hug for handling the conversation so graciously. Perhaps I needed the cold-hearted Dr. first in order to appreciate Dr. North’s warm character. He reminded me of my Gigi and her ability to calm even the darkest of storms.
“I think I’m ready to check out these support groups,” I stated very nonchalantly as we made our way to our cars.
JoJo stopped dead in her tracks, “That sounds amazing! I mean, I think it could really be good for you.”
“I hope so,” I said hesitantly.
“You know what?” Jo asked.
“What’s that JoJo?” I asked as we turned toward one another.
Taking my hands into her own, “I’m really proud of you, Kat.”
Dropping her hands, “Oh shut the hell up.” I was never good in situations such as these. Declarations of love and admiration made me extremely uncomfortable.
Reclaiming my hands, “Would you stop being a total bitch and let me say this. I can’t even begin to imagine or comprehend what you are going through, but you are amazing. If I could, I would take this pain away from you in a heartbeat. It’s just not fair. You are dealing with this with such grace…I just…”
Instead of responding, I took Jo into my arms and hugged her with everything I had. Not only was this horrible disease attacking me, but it was robbing the people I loved with its wicked ways. Jo was right; it wasn’t fair. Nothing about this shitty situation was fair, but who ever said life was fair?
I pulled Jo away at arm’s length, looking into her glistening eyes. Wiping tears from our cheeks, I threw my arm around her neck. We walked, devoid of words. Nothing needed to be said in that moment.
How the hell am I going to get through this, not to mention my friends and family?
The night of my first meeting I was terrified. Racing around my room, I flung clothes over my shoulder and onto the bed where Jo was sitting. Swimming in a sea of clothes, she giggled at my pathetic attempt at playing it cool.
“Damn, girl. You act like you’re going on a date. Oh my God, what if they’re some hot guys there?”
I dropped everything in my arms, swiveling around to give her a look from hell. “Really, Jo?”
“What? You never know when the love bug will hit. All I’m saying is, entertain the idea at least.”
“Jo, I love you. I do, but what the fuck? From what I’ve learned over the past few weeks, ALS is usually common in older people. So, unless I’m shacking up with Willie Nelson himself, I don’t see this as a dating opportunity.”
“So why are you so adamant on looking perfect?”
I stopped what I was doing and wrestled with the fabric in my hands. “It’s going to sound so stupid.”
“Try me,” she sat up, crossing her legs and giving me raised eyebrows.
“I just… I
just don’t want people to feel bad for me. Like, I still have my shit together and I’m doing okay right now.”
“Well, you need to throw the bs out the window right now. There are going to people there in all stages of this disease and one-upping them isn’t the way to go. Be you. Be real. Allow yourself to be vulnerable. If anything, these people may know you better than you think.”
As usual, JoJo was right.
At precisely 5:55 PM, I sat in the parking lot of St. Peter’s United Methodist Church, contemplating if I wanted to turn around and go home or go inside.
“What’s wrong with you Kat,” I mumbled to myself in the dark confines of the car. “Get your ass in there.” I was one verbal lashing away from waging war on my steering wheel again.
Screw this, I’m going home.
Turning over the key, the engine choked and sputtered.
No, no, no. Not tonight you piece of shit!
I laid my forehead on the steering wheel, cursing this damn car. It had been nothing but a pain in my ass since I got her. My dumb ass didn’t call Lee either. I was such an idiot. Jo refused to pick up the phone. Great! I guess I was going to need to bite the bullet and go inside.
I grabbed my bag from my passenger seat and cranked open the door slightly. With one swift kick of my purple Converse, I freed myself from my captive. Somehow Jo had talked me into jeans, University of Kentucky sweatshirt and Chuck Taylor’s. Usually this would be my Sunday afternoon grocery store outfit, but what the hell.
Time to Carpe the fuck out of this Diem.
Walking into the church, I was immediately bombarded by the scent of residual candles. Vanilla, a scent I loathed. Turning to a giant bulletin board, a handwritten poster read “ALS Support Group, Sunday School Room 8.”
Awesome. Nothing like shedding mortal tears in the house of children disciples.
The door to the room was conveniently open as everyone corralled around a table of light refreshments, stale cookies and canisters of hot coffee. Anxiety started to take over my mind and body as the entire room froze once I entered.
Diverting my eyes, I did a one-eighty; taking a seat in the back of the room. Slowly everyone began to take his or her seats. The room was filled with people in all stages of the disease including family, friends and caregivers. I hadn’t realized I could bring a mini support group for my support. Had I remembered, I would have brought JoJo in a heartbeat.
Some communication!
As much as I would love a few stale cookies to settle my angry stomach, I really wished there were some hot cocoa. I may just need to bring my own next time. That’s horrible!
I hadn’t heard anything regarding the topic for the evening so I settled into my uncomfortable folding chair at the back of the room, begging to be invisible. To be perfectly honest, I wanted nothing more than to listen and observe. The “Hi, my name is” bullshit was not my bag, and especially not concerning ALS.
I sat in my seat allowing my eyes to vaguely roam when they landed on a giant projector screen at the front of the room. Reflecting off the screen was a countdown clock till the beginning of the meeting. Never before had a clock seemed so morbid and yet comical. Our lives lived by the second hand while this was a clear reflection of the magnitude of our own mortality.
Shaking my head, I gave a silent chuckle.
The chuckles were a revelation that life fucking sucked sometimes. As much as I hated to sit there in my painfully uncomfortable chair and laugh, I couldn’t suppress the hilarity of the situation. One by one people began to look at me as if I was bat-shit crazy, and conceivably I was at this point.
Squeezing the bridge of my nose, I tucked my head to suppress the tears. I hadn’t been this wrapped up in laughter since the third grade when Ms. Pritchard kicked me out of class because I couldn’t conduct myself as a proper young lady. I couldn’t tell you what the butt of the joke was at the time, however the laughter came from the gut and wouldn’t subside. The type of laughter that reminded me of a can of worms; as much as I tried to hold it back, it was inevitable I would double over and pop.
As I laughed myself to tears, the speaker of the support group tried desperately to get my attention.
“Excuse me, ma’am. What’s so funny?” he asked as I refused to look up from my stupor.
“I just think it’s hilarious how you have a room packed with ALS cases and you have a countdown clock; as if time isn’t always on our minds twenty –four –seven already. I’m sure everyone in this room is astutely aware of when a simple meeting begins, the clock is just a morbid reminder that the clock is always ticking away.”
Quietly at first, you could hear the room begin to chuckle as the humor started to set in. Something told me, this happened very few and far between, but it was the best way to make my grand entrance into this group of misfits. The laughter began to die down and I slowly raised my eyes to see a room of smiles. One of those enormous smiles came from a very cute and very attractive lecturer – Lee Daniels.
What the shit? Why the hell was he here?
“Ms…” he requested.
“Dove,” I replied as the surprised expression covered my face.
“Ms. Dove. You’re new to the group, why don’t you tell us a little about yourself.”
Ah yes, the AA approach to introductions. My favorite.
No part of me wanted to stand up, especially in front of a guy I was attracted to who now knew he had no shot in hell with me. Why would he? In t-minus thirty seconds, he’ll find out just why I’ve put off calling him.
“Hi everyone, my name is Kat Dove,” I stated wringing my hands. “I’m 33, an Aries, and love long walks on the beach.” Humor was and always would be my deflection. It was just simpler to make jokes then to allow the emotions to take over at that moment.”
I received a low rumbling chuckle as I tried to take my seat and blend into the crowd. Just as my ass was about to make contact on the folding chair, Lee spoke up.
“And are you here as a patient, family member, friend or caregiver?”
Panic rushed through my body as I stood back up to address Lee’s question.
“Patient.”
I tried to sit again when Lee threw another question my way.
“And how long have you known you had Lou Gerig’s disease?”
Again standing, “About a month.” Instead of taking a seat, I decided to let it all out that way I could sit down sooner.
“January 20th at 1020 a.m. to be exact.”
Recognition began to set in on Lee’s face as he remembered exactly what day that was – the day we met.
“I was having a particularly awful day already, when I was sat down and told the news. I had been through ever test imaginable, but I knew something was wrong immediately. My doctor at the time let me know when I was completely alone. Shitty, huh?”
“Doctors don’t know shit about bedside manner, honey. We’re just another zero on the end of their paychecks,” a sweet little old lady chirped from the front row.
“Right?” I chimed in. “By the time I let it sink in and my best friend got there to console me, I was completely zoned out. My brain shut off and all I kept thinking was…”
“I’m going to die,” a really young guy sitting three chairs down from me said.
“How will I tell my family?” Another twenty something spoke up. Her nametag said, “Denise.”
“How much time do I have?” Another spoke.
“Will I ever get laid again,” a thirty something man said three rows in front of me.
“Exactly,” I responded. They got it. They knew exactly what I was thinking and how I was feeling. That was something JoJo would never understand as badly as I wish she could.
“Most importantly though, am I tough enough for this battle?”
“I think if you ask anyone in this room, they’ll all tell you the same thing. You are stronger than you think. And of course you can still get laid, Kenny. Don’t sell yourself short big man,” Lee interrupted our conversa
tion.
I wanted so badly to believe this disease wouldn’t cripple my sex life, but let’s get honest here. And what about having kids, growing old, having grandkids. That was never going to come to pass. Then it happened. What I had dreaded since the mention of coming to this blessed meeting – I began to cry.
I sat down, allowing Lee to begin his lecture as I tried to collect myself in front of the group. Sitting next to me in a high-tech wheel chair was a woman not much older then myself with the nametag, which read, ‘Chris’. She was so beautiful and yet there wasn’t a sad bone in her body just then.
“I have tissues in my bag on the back of my chair if you need them, sweetheart. I’d help, but I lost mobility in my arms and legs about a year ago.”
Although it shouldn’t have, seeing Chris like this made me uncomfortable. Not because of the wheel chair, but because I would be in her shoes one day. I was looking into my future right before me. The horrible part about ALS is the cognitive functioning. The disease never takes a hold of your brain, but eats away at your muscles until you can no long move. Your brain is fully functional and at some point or another, you are a prisoner in your own body. If it weren’t for advancements in technology from eye movement controlled computers to assistance sticks for keyboards, you would literally see the world passing you by, unable to do anything about it.
“Thank you,” I said as I reached into her bag extracting a Kleenex pack of animal print tissues.
“Cute tissues,” I blew my nose.
“I have to keep some part of my personality alive,” she laughed quietly.
“Well I love your style.”
“First meeting?” she asked.
“Yep, how could you tell?” I grinned from beneath my tissue.
“You can always tell, but you shared more than most on their first rodeo. Props!” Chris responded as her expression maneuvered with her eyebrows.
“But I cried,” my brow furrows at my response.
“So what. We all do. Ain’t nothing we haven’t already seen or heard before. Listen, this room is a sanctuary for those folks who need to vent, are sad, need info or who have people in their lives who have no clue what it means to have this fucking disease. You won’t be judged here, so never feel silly or dumb for speaking your mind. Trust me, I’ve said and done some stupid shit with this group.”