Thursday, June 22, 2017

Why I Need Medicaid

We all have our own ideas of what public assistance or welfare means. To me, Medicaid meant poverty, a place I didn't think I'd ever be. Even when I became ill, shortly before my sixteenth birthday, I didn't file for Medicaid. My dad had private insurance. I was on his policy. In those early years, we all thought I'd get well. But I didn't.

When I turned twenty-two, I made my first attempt at getting disability payments. I didn't want to, but I would get kicked off my dad's insurance in a couple of years. I needed to get on Medicaid. But wasn't that for poor people?

One day I woke up chronically ill and, after several phone calls that day, I went to bed with a new word for myself: disabled. I would learn to say it during the two years, two denied appeals, and finally, a court hearing when I was granted my benefits.

I always expected to work and support myself. I would have guessed that when I turned forty, I'd be helping my dad with his expenses instead of him still supporting me. Medicaid is essential, It pays for the Humira shots which keep my Crohn's disease under control. The cost of those shots? $1500 a month. There's no way my dad could pay for that, too, and no way I would let him. But without them, I would be so much sicker than I am now. In the years before Humira was available, I almost died twice.

I never expected to be in this place. I hate asking for help. I hate needing help. But I know what happened to me could happen to anyone. It's the reason we all put our tax dollars into programs like Medicaid. It's the reason these programs were created and the reason why members of Congress of both political parties have voted over and over to protect these programs even when that vote meant those members of Congress would lose their next election.

When I heard about the new health care bill and its deep cuts to Medicaid, I was stunned. All I could think was what will I do if I lose Medicaid?

I know I am not alone. I think about other Americans who are chronically ill. About my friends who have children with autism or down syndrome. About friends with schizophrenia or bipolar disorder or post traumatic stress disorder. About friends who have lost their jobs and have young children. About the elderly who just barely pay their bills each month, thanks to the help they get from Medicare. None of us chose these battles. We would prefer independence and self-sufficiency. We are not in this place because we are lazy.

Earlier this year, I watched my hero Congressman John Lewis vow to fight every day and every hour for the health care that Americans need and deserve. Congressman Lewis has been fighting for fairness and justice since he was a teenage civil rights advocate. Now, at seventy-seven, he could retire comfortably, but he continues to fight.

I fight with the gift I have. I fight with my words. 

I ask for your help. Call your senators. Ask them not to vote for this bill. Please.

Friday, May 12, 2017

         Mother’s Day

The prophet you offered me
warned that silence
like a cancer grows.
The only thing
worse than silence
is their Truth.
One of your brothers
questioned your worthiness.
Another reminded me (a child)
that I wouldn't see Heaven.
Is it any wonder she self-destructed?
Is it any wonder she disappeared?
Even you, the strongest of us,
broke, one piece at a time, but
only after we moved back
to our dearest
and darkest demons.
I, the last one standing,
long to live somewhere
not here.

–Cynthia Sillitoe
May 2017

Monday, November 21, 2016

What It's Like To Not Be LDS (it means Mormon) In Utah or Oh, Snap

If you are a member of the Church of Jesus Christ of Latter-Day Saints (LDS) and you want to know what it's like to not be a member of the LDS church living in Utah, I suggest a classic behavior psychology exercise. (Let me be clear, because it's so classic, someone else may have blogged about this idea before. I don't know. I didn't do any research. It's just the best way I know to communicate in a very tangible way what it's like to not be LDS in Utah.)

Find a rubber band. It may be harder than you think, especially if you have a cat or dog or toddler who chews on everything, but be as persistent as LDS pioneers and find a rubber band. Next, put it on your wrist. Now have a conversation with someone. (You might want to explain what you're doing ahead of time or this could be awkward.)

Every time you mention something that relates to the LDS church, snap the rubber band. Possible topics include the obvious--like your church job or the fact that you're going to the temple tomorrow--and the not-so-obvious.

Here are a few to watch out for:

your son's boy scout troop
paying your tithing
needing an idea for Family Home Evening
waiting for an email from a loved one serving a mission
genealogy (I know. That's not strictly Mormon territory these days, but still.)
picking your kids up from a basketball game at a ward
the ward's camping trip next week
choir practice
the casserole you need to make because someone in the ward died
the novel you just got at Deseret Book

After a while, you're going to notice two things:

that rubber band hurts
you talk about church more than you thought you did
yes (but some of us could have told you that.)

As far as the pain goes, once you get sick of it, you'll find yourself trying to think of things to talk about that have nothing to do with the church. You don't want to snap that rubber band, so what's a safe topic? That apprehension you feel right then? That's what we, who are not LDS, feel when we want to tell you something about your life, but we are afraid we will be judged. 


Avoid the pain. Think of as many things as you can to talk about that don't involve the LDS church. If your memory is as bad as mine, write a few of them down. 

Next time you're having a conversation with someone who is not LDS, talk only about those non-snap-worthy topics. Trust me. The non-LDS person will appreciate it.

Happy Thanksgiving!

Monday, March 7, 2016

Mother's Day

I don't believe in coincidences, at least not as a rule.

Today, while I was in my therapist's waiting room, a woman entered. She carried a small pet carrier. Within it, a small black and white dog whimpered, and the woman tried to shush her. 

"It's okay," I said. "She's not bothering me." And then I looked at the woman and said, "One of those days?" I thought maybe she'd taken the dog to the vet and that appointment went long and she didn't have time to take the dog home before her own appointment. 

The woman said, "She's my mother's dog. My mother just died two weeks ago and the dog can't be left alone. All I could think was to bring her with me."

I met her gaze and said, "I understand. Soon it will be six years since my mother's death." I added, "It sucks, doesn't it?"

And she said softly, "Yes, it really does suck."

Before we could talk any longer, the woman's therapist came out and seemed delighted to see the dog was with her and ushered them both into her office. Meanwhile, I started rooting around in my purse for a tissue.

As I did, I remembered an appointment I had a few months after my mom died. (No, I did not have a dog--or a cat--with me.) My mom and I lived together and her bedroom was by the back door. As I walked past her room, a wave of grief washed over me. My whole life, when I would leave the house, my mom would tell me I looked pretty. When she and I would laugh about her ardent feminism and how maybe she should have told me I looked smart or brave or confident, she would shrug. When she left the house, it was her mom's custom to tell her she looked pretty. Some things just get handed down.  

That day, I realized that I would never, in this life, hear my mom tell me I looked pretty. The thought almost made me double over in pain. Next I realized that if I did something crazy, like got married, she wouldn't be there to zip up my dress, smooth my hair, and tell me, before I walked towards the aisle, that I looked pretty. 

Already running late, I bit my lip, pulled myself together, and headed out to the car. 

When I arrived at the doctor's office, the elevator door opened and a young woman, maybe in her 20s, with Down's Syndrome* and accompanied by her mother, looked me straight in the eye and said, "You look so pretty today." 

I smiled, thanked her, and assured her that she, too, looked so pretty. I stepped into the elevator and, as the doors closed, I half-laughed and half-cried. It was just like my mom to find a way to tell me that and remind me that she wasn't as far away as she seemed.

During a recent trip to San Diego, I kept noticing dandelions. It surprised me that they'd escaped the hotel's gardeners. Something about those dandelions made me smile. I liked their wild determination. Today, I noticed some again, and scribbled a potential line for a poem: my path is strewn with dandelions. 

Tonight, I glanced at the note and remembered. My mom once wrote a poem about my brother, aged two or three, bringing her a bouquet of dandelions. I've looked everywhere for the poem and I can't find it. But I know she wrote something like this "Even though it was early March, not May, it was in fact Mother's Day."

I miss my mom, but my path is strewn with dandelions. 

*I mention the Down's Syndrome because people with Down's Syndrome frequently play the role of messenger in after-death communications. Some think it's that they are closer to the spirit world; some think it's because they are less inhibited. I think it might be both.

Friday, June 19, 2015

I Have A Mental Illness

Prequel: I'm not interested in hearing about other people's meds or holistic treatments for depression. Save your time and energy. Also, I am not truly suicidal and already have an excellent support team, so don't feel you need to offer your support.

Ok, writing that title freaks me out. I said it a few times and thought "I am ready" and then I typed it
and thought "Shit."

For years I've felt it important to be honest with my struggles with depression and anxiety (does that give me one mental illness or two? I'll ask my therapist next month.) I hate the shame and silence that surrounds mental illness. And I decided if I was going to be honest about the symptoms of my chronic illnesses: Crohn's Disease and Systemic Exertion Intolerance Disease, (which is what we now call Chronic Fatigue Syndrome. I know. It's a small step forward and yet it took thirty years to get there, but I digress) why should I be ashamed to mention a panic attack? I was going to take a stand and, while I took it, I stayed in denial about that mental illness term.

Today, after reading this blog:

And thought, it's time for me to be more honest.

In 2009, my cousin, Matthew committed suicide. For a variety of reasons, I never got to really know Matthew. My loss. Watching my aunt and uncle and Matthew's four siblings grieve was agony. I kept wishing that Matthew had reached out to me--which is unlikely since we barely knew each other--but I could have talked to him about wanting to die. I've spent a lot of my life in that place.

As I've switched from one med to another and than back again at a different dosage, all the while weepy, panicked, anxiety to the point of terror, and pretty irrational thoughts (made worse by the fact that when my meds are off, I don't get enough sleep, so then I'm more irrational.)

Actually, as I described the latest flare with my therapist, she asked where I was on wanting to die thoughts and I said "Way more than usual." She replied," so, when the meds are working...." and I said, "Yep. When the meds are working the best, I still have my wanting to die moments, though I'm trying to rephrase those: "I'm exhausted,' 'I need help' 'I'm overwhelmed.' But almost every day I have a moment when I think longingly of death."

When the meds aren't working, I want to die violently. (Not by coincidence, we don't own any guns or sharp knives.) I not only want to die, but I want my blood and guts and brain spattered all over the floor and walls and ceiling as finally the tangible proof of my pain. Because often that's what depression is. It's just unrelenting pain to the point it incapacitates you and yet, unlike an arm chewed up by a lawn mower, I can't offer a doctor a glimpse of what part of me hurts so much.

And then there are the almost daily moments when I yearn for a gentler death. I imagine a moment when my work on this beautiful, but so crazed world is done and I will just let go. I imagine that, like Frodo in Lord of the Rings, someone will offer me a hand and I will take it with a sigh, look back at those I love and will miss but, knowing it is time, I will step out of this life, leaving behind me the illness and pain and find a place where I can rest for awhile..

Sunday, December 7, 2014

A Poem For Emma Lou

 A Poem For Emma Lou

It was always going to be
 impossible to lose you.
Nine decades in this life
more than you had asked,
more than most receive,
and yet my heart pleads
not yet, oh, not yet.

You spread your light
and warmth over so many,
telling us we were marvelous
and strong,
extraordinary and brave,
and we believed you.

And now, set free,
to run and dance
and ride at a gallop,
I hear you laugh
and know you are not lost,
not far, not gone,
just a little bit ahead,
slightly out of sight.

–Cynthia Sillitoe, December 2014

Thursday, October 2, 2014

An Apple A Day Really Bites

So this story begins with me and and iPod and a computer. We all got along great. Whatever song I downloaded from iTunes showed up on my computer and then I'd pug in my iPod and it showed up there, too. I could even make playlists on the computer, synch my iPod, and there they were. It was fabulous.

But my humble little iPod didn't have a lot of space on it and filled up, so I got a new one. I don't know which iPod it is. It's black and silver and says iPod on the back. And it has white earbuds and lots of memory. When I got the new iPod, I had one problem. My computer didn't have as much memory as the iPod, so I got around that by unchecking a box or something, and the computer, new iPod and I got along synching problems. I'd download music, it would be on my computer, I plugged in the iPod, and it was now on the iPod. We were so happy.

I finally upgraded my PC and that's when the trouble started. Not right away, of course. Right away, everything was fine. The iPod synched with iTunes on my computer (which is also black and runs some kind of Windows software) and I thought cool. Until I tried to buy new songs or U2 gave me a free album (which was sweet of them) showed up on my computer, and on my iPad, but not on my iPod. Now, why this music will show up on my iPad, which I have not synched with my new computer....I don't know. I mean, I figure it's that it has the same Apple log-in and password, so it's kind of automatic. It would be kind of nice if it would show up on my iPod, especially as I prefer to play music from my iPod, which is why I got the damn thing.

But it didn't just show up on my iPod and thus began my quest of synching and re-synching and swearing. And I exported and imported and I imported and exported and spent way too much time reading various "how do I make my Apple products all get along" forums. And I watched some videos.

One very bad day, I thought I'd figured out the secret and I checked (or unchecked) something and half my music went away. I said bad words and shrieked and ran around and found my old PC, lugged it upstairs, preformed electronic CPR on it and restored my iPod. Except, of course, for the new music.

Today, I thought I had it again. I would give up hope of getting iPod playlists to the computer and create new playlists on the computer and export them to the iPod. That didn't work, either.

Someone told me that what I really needed to do was buy a Macbook and everything would synch fine. And I said, "Uh, yeah, you want me to buy another piece of expensive Apple technology just so I can use the ones I have now? Do you have a bridge you want me to buy, too?"

I keep reminding myself that I can listen to all of my music somehow, just not all on the iPod. (And I haven't even tried adding my iPhone into the equation.) And I remind myself that this is a first world problem and that all suffering is transitory and maybe in my next life all my gadgets will work together. Or, maybe in my next life, I'll get to be the one who invents cool technology everyone wants to buy.....and then as they try to use it, I'll just laugh.