Cari

Cari Looking to the Right (2)

I walk into Cari’s room. The lights

are dim and the TV is on. When she looks

up at me from her recliner, I notice she is

squinting.

“Oh. Migraine”, I say, keeping my

words to a minimum.

She sighs. “Yup”.

“Again”.

“Yup”.

“I’m sorry. I’ll be quick. I want to let you know a caregiver won’t be coming today, after all”.

“Oh. Who was on”?

“Liza”, I say.

And then I quietly leave the room, closing

the door gently behind me.

As I return to the living room, I reflect on our relationship. Cari and I met through a mutual friend. I had heard she had epilepsy, too, and I really wanted to know how she managed.

I had a lot of compassionate friends, but I knew it would be different if I met someone who dealt with the same issues that I did. I wanted to know: how did she cope? Did she have seizures often? What kind? Did she take meds? Were they under control?

We eventually got together and shared information, and shortly thereafter, became friends. The friendship turned into attraction and we fell in love. A year later, we exchanged vows in a wedding ceremony in our front yard.

When I knew we were falling in love, when I knew this was a relationship I wanted to pursue, I realized at some point we would need help (I had learned in the first few months of knowing her that she had other health challenges, including debilitating migraines, chronic sinusitis, and what eventually culminated in arthritis throughout her body, due to past injuries and years of playing sports. On top of that, she occasionally walked in her sleep!). At first, this help came from friends who were willing to step in when we were both down for the count, mostly to do needed errands. But I knew as we aged, we would need more assistance.

Evening is my favorite time of day, because it means that Cari will come out of her den and we’ll watch TV together for a couple of hours before the caregiver shows up for the night. One of our cats (Reggie) curls up between us as we watch our favorite programs. It’s family time for us.

I love this ritual. We may not talk much, but that doesn’t matter; her presence is really all I need. She gives me something that no one else can, because she understands what it is like to live with chronic conditions and because some of those conditions overlap.

Over the past 25 years, we have seen each other through seizures, pain, emotional ups and downs, struggles with doctors, changes in medications and even menopause. We have figured it out. We get each other. And that gives me incredible comfort, and that is what has kept us together.

There are times, though, when one of us becomes insecure and wonders: Am I too much for her?

Here’s my response when it’s she that feels this way:

 

My Rock

 

You are my rock

not my hard place.

I lean back on your

solid stone so I can

feel the sun on my

face and the breeze

on my skin.

You are an artist.

You take the pieces of me

that are broken

– shattered shards –

and make them into

stained glass

the light singing through

all of the colors

not leaving even one of them out.

Cari and Maluma Peaceful (2)

 

Love Matters

One day, my caregiver drives me to Ukiah – a half hour away – to go to the Social Security office. I anticipate a long wait, as I don’t have an appointment, but we get there early and only have to wait 15 minutes. When I go to the window to talk with someone, our exchange is even more brief.

I had planned to have lunch afterwards, but it is too early for that, and I don’t feel like going home. It occurs to me that I could visit Josephine, who has dementia and lives in one of the facilities in town. I tell my caregiver my idea and off we go.

I haven’t seen Josephine in a long time. I first met her in Massachusetts when I was 13 years old, about 50 years ago. She is the mother of my first boyfriend, Mark, who, long story short, ended up living with me and my family until he graduated high school. When Mark and I broke up a few years later, I ended up renting an apartment from her back east for a short time. Our families have interacted with each other over the years: Josephine bought land in the tiny town of Elk, CA, where my parents moved to, and Elizabeth, her daughter, moved there once a house was built. Josephine continued to live back east, but she came to visit Elizabeth often, and, while there, saw my parents too, and sometimes I’d make an appearance during these visits. Mark and I stayed in contact over the years and he would occasionally call my dad, whom he had made a strong connection with while living with us.

When my caregiver and I arrive at the facility, I start having doubts: Will she remember me? Why am I doing this?

Putting these questions aside, I go up to the front desk and ask the woman behind it if I can see Josephine Mitchell. She lets me know she’s in the middle of an exercise class, but it would probably be okay if she came out for a visit.

While I am waiting, I look around: The lobby looks clean and spacious, but what about the rest of the building? Does she share a room with others, and if so, how many? I don’t think Josephine had a lot of money, so I don’t know what she can afford.

In the midst of these thoughts she shows up in the hallway that leads to the lobby. I’m surprised at how young she looks. She doesn’t appear much older than the last time I saw her – probably 15 years ago. I approach her tentatively, not knowing how this is going to go. I have never been in this situation before and I don’t know how to act.

As I get nearer, I notice that, although physically she looks the same, there is something in her manner. Josephine always seemed sure of herself, confident and outspoken. Instead, the woman before me looks a little lost, a little frightened and as awkward as I feel. She has a small, uncertain smile on her face, which makes her seem young, almost innocent.

“Do you know who I am?”, I ask.

She shakes her head.

I explain my relationship with her, mentioning her son’s name. When all I get is a blank look, I add a little more: where we met, that I know her daughter, as well. But I can tell this doesn’t trigger any memories at all.

“Well”, I say, feeling foolish, “can I give you a hug”?

She shrugs and then gives a little nod as if to say, “I don’t have any idea who you are, but you seem like a nice person, so why not”?

And so, I give her a gentle hug and then we just stand there looking at each other, both of us unsure what to do next.

“Well, I guess you might as well go back to your class. It was great to see you”, I say, lamely.

When I leave, I continue to feel foolish. What was I thinking coming here? It meant nothing to her.

But, as the day wore on, I realized it meant something to me. I gave myself the gift of respecting my own memories that are still with me, as she edges towards death, leaving hers behind. Those memories connect me to an impressionable and precious time in my life that left a positive imprint, which compelled me to reach out to Josephine.

Memories link us together. When we think of someone in some significant way, it is our memories of them and what they stand for that causes us to act or feel a particular way. Somewhere deep inside of us, we sense that this interconnection leads to interdependence for all of us. Simply said – we need each other to survive and thrive.

It was also a good lesson for me to be on the other side of things. I thought that because of my own experiences of loss of memory after seizures, I would know exactly what to say and how to act with Josephine. But I didn’t. It was humbling. And it also gave me insight into what my caregivers, friends, and family sometimes go through when they struggle with how to be with me when I am feeling seizury or extremely sleep deprived or anxious. I now know how they felt.

Love isn’t always straightforward.

Relating to others can be awkward or confusing. We will sometimes feel foolish in our interactions.

But, that doesn’t matter. What matters is that we try. What matters is that we show up in difficult times. What matters is that to the best of our ability, we say and do things that add up to “I love you and I care”. What matters is that we don’t give up on ourselves and each other. We are all fools for love at some point or another; hopefully often.

Love matters.

Envy

A Climb at Hongshou

I am seriously envious. My sister just came back from China. She went to a huge Chinese wedding. She climbed a mountain that looks just like the pictures you see; swirling fog at the base of the mountain, steep inclines, wild orchids growing on the side of the cliff. She hiked the Great Wall. She ate exotic foods and met all kinds of people. My sister is 52 but has the energy of a 20-year-old. She lives in Massachusetts and in five days will fly out here to California for 5 days!

I’m bright green with envy. Glowing. You can see me from miles away. I want to travel too. And often. And go just about anywhere. She sounded upbeat and as full of enthusiasm as a puppy. I told her “I wish I had about 1/3 of your energy!”.

I grew up in a family where travel was our middle name. We lived in California 9 months out of the year and 3 months on the east coast. Before I had problems with seizures and severe sleep deprivation, we went to Europe: Denmark, France, Italy, Greece. I went to Jamaica with my parents and Trinidad and Tobago. Guatemala and Honduras. Traveling is in my blood. And now? Now I don’t drive outside of my hometown. If I go anywhere else, I have to have a caregiver take me, and then usually for a doctor’s appointment a half-hour away. I did manage a trip back east last year with two caregivers, but it was brutal getting there: I felt like I had to slay a few dragons to get there.

In my fantasies, I’d like to live back east part of the year. I’d like to travel to Asia – Bhutan maybe? Thailand, Nepal? I’d like to go to Africa, too, but I’m not sure which country. Europe: pick a country, any country. I’d like to go to Alaska and see the Denali National Park. I’d like to go to Nova Scotia – just ‘cause. Costa Rica for sure. Australia and The Great Barrier Reef. Tahiti. The Caribbean. I want to see the Taj Mahal. Machu Pichu. Findhorn. Stonehenge. Victoria Falls. I’d like to hike, swim, zipline, snorkel, scuba, snowboard, hang glide, surf and kite surf.

So… I’m just a tad envious.

Which brings me to the topic of complaining. As someone with chronic illness, I feel like I’m not supposed to complain too much. There are always others worse off than me. So, I should be grateful for what I can do. As a society we love the “super crip”- the differently abled people who not only never complain but are able to do extraordinary things. Someone without legs managing to run a marathon with prosthetics. Someone who is blind who climbed a mountain. Someone who has Crohn’s disease becomes a medical doctor. These are all commendable achievements to be sure, but what about the rest of us who don’t accomplish such feats?

Personally, I think for most of us, it’s a feat just to make it through the day. For someone who suffers from depression to get out of bed. Another to walk from the bedroom to the living room. To get through one more day of pain without thoughts of suicide. To be able to balance a check book, make a meal, sweep the floor. Hold down a job.

In the middle of writing this, I took a break and walked outside. It’s been raining lately, and everything is so green. There’s the dark green of the pine trees that line the driveway, the ends of which are lighter from new growth. Cattails below the house shimmer a soft green that sometimes darkens when clouds pass by. The tall grass in the meadow is a shiny lime green. Green is a beautiful color with so many shades.

So, are there various shades of human emotion: fear, irritation, rage, excitement, sadness, and yes, envy? It’s human to have and feel emotions. To get stuck in them and have them eat a hole in your stomach or heart is something we want to avoid.

When I came back from my short walk, I felt something inside shift. I sat down and listened to the rain that started falling – a beautiful sound. I glanced at my cats who were sleeping peacefully. And I sat with my envy, green and glowing. It’s a beautiful thing too! A human thing.

And so, when my sister comes to visit, I will hug her hard, and squeeze her hands, and ask her more details about her adventures and look at her pictures on her iPhone. And I will be happy for her. And I will be grateful I have a sister who I love and loves me back.

And I will probably bring with me a touch of green envy. Emerald? Perhaps ivy? I’ll decide then.