Victor

I arrived at this hospital yesterday. When checking in, I told them I had been feeling suicidal. Someone put me in a wheelchair and brought me up to the 4th floor: the psychiatric ward. Someone else went through my belongings and found a pair of draw-string pants and pulled out the thin, cotton strip that would cinch around my waist. Did they really think I would kill myself with that?

Then, I was shown to my room with a single bed, the only window looking out at a drab grey building. I was told someone would check in on me every fifteen minutes. Instead of this unnerving me, I felt a great sense of relief. I felt safe for the first time in what seemed a long time.

The next day, I meet the other patients. There’s Andrea, who has obviously either been here for some time, or has come here before. She shows me “the ropes”: where to do laundry, where to shower, what time meals are. She rooms with Jasmine, who appears to be about Andrea’s age and it’s clear they have formed a friendship. One time, I hear a commotion, so I poke my head out of my room. Jasmine is in a wheelchair and Andrea is pushing her hard and fast down the corridor. They are both laughing and whooping it up and I find myself smiling a much-needed smile.

Then there’s Oscar with his droopy mustache and shuffling walk, who hangs out often with the waif-looking Toby; the two of them often having private conversations.

And then there’s Henry, who is wall-eyed and Asian, whose black, untended hair stands straight up. He can’t bear to look anyone in the eye and his whole body language is apologetic. He exudes both sweetness and confusion.

Victor is the only patient I am afraid of. He exhibits that kind of behavior that you see on the street that you want to avoid. He stands in a corner and argues with someone – someone the rest of us can’t see. Sometimes his voice becomes louder, turning to rage. Because I am so very anxious, and because there often seems to be no orderlies around, my fear escalates. I wring my hands; will he become violent? Will he unleash his violence on someone here? Me, even?

The other patients and I keep our distance from him. We all, excluding Victor, gravitate to one another, forming a kind of short-term family, while he remains a loner. I don’t know about the others, but I want it to remain that way.

But on my third day here, something changes that.

We are all gathered in the community room, including Victor. We take our places – Victor in the corner arguing, the rest of us sitting around the table, loosely interacting.

The TV is on, as usual. Today, someone has put in the DVD “Ghost”, which we look up at occasionally. Then the famous scene comes on with Demi Moore at the potter’s wheel, while Patrick Swayze comes up from behind, puts his arms around her, his hand joining hers. Then the familiar song, “Unchained Melody”, by The Righteous Brothers starts up, enhancing the scene.

Suddenly, Victor stops arguing. He turns from his corner and walks towards us and looks at the screen. He listens for a second, then opens his mouth and starts singing. His voice is full. His voice is tender. His voice is full of feeling. He knows every word, and every word is pitch-perfect. His gaze, usually hard and glazed over, becomes bright and clear, his blue black face is beatific and glows with an inner light. He is angelic.

The rest of us watch him, our jaws dropping. We are transfixed. We can’t believe what is happening. We know we are experiencing some sort of miracle.

And then the song stops – and when it does, Victor’s demeanor changes, and he turns away and goes back to his corner, resuming his argument.

For a full moment, no one says anything. We are stunned into silence. For a full moment we drop our roles (and our guard) and fall into that silence.

And then the moment passes. Patrick Swayze removes his arms from Demi Moore. Andrea and Jasmine look at each other and giggle. Oscar and Toby exchange glances. I bite my nails, my nerves returning. Henry hangs his head, as if embarrassed to be alive.

∗                  ∗                  ∗                  ∗                  ∗                  ∗

Now, looking back at that incident, I realize many things. The first, most obvious realization is that music has the power to heal, if only for a few minutes. Everybody knows this, to a degree. If I’m feeling funky, I can, for example, listen to Al Green’s “Belle” and my whole mood shifts. When his beautiful, soulful voice enters the room and for some time afterwards, I feel uplifted, changed.

The second realization is that for as long as “Unchained Melody” lasted, Victor was no longer “other” – someone to be feared and avoided. For those few minutes, he became a part of our weird, dysfunctional family. He became a part of us, and we were a part of him.

For years afterwards, I thought about that incident and wondered about Victor: How did he get that way? Why was he so angry? Was it purely a “chemical imbalance”? What was his life like before he came to the hospital? Did he live on the streets? Does he now? Did he ever fall in love, have a family?

Of course, I don’t know the answers to these questions. I only know he is my brother of sorts. I know his metamorphosis made me believe in miracles. I know I want beauty to be always a part of his life.

And, wherever he is today, I hope he is singing.

Unchained Melody by The Righteous Brothers/Produced by Philles Records (1965)

Belle by Al Green (producer, 1977)

∗                  ∗                  ∗                  ∗                  ∗                  ∗

No Separation

 

If you think you are

not the drunk at the post

office reeking of alcohol

and loneliness, you got

another thing coming.

Pain is pain.

Nobody wakes up one day

and decides to be homeless

and carry around a bottle.

What happens in that space

between the precious baby

and the stumbling man?

If there’s one thing I know,

even though at times it

may seem otherwise,

is that there is no such

thing as “us” and “them”,

and until we realize that

there will be no peace.

So lend a hand, a smile,

some money, sign a petition,

say a prayer, tip higher

if you can.

Each act helps us yield

to the simple truth that

there is no separation

between me and you.

No one is going

to come along

and save us from our

own undoing but ourselves,

interconnected reflections

of each other, each of us

a part of the holy web.

                        ~ Maluma

 

 

Faith

Here is another quote from the book I was writing on chronic illness, that never came to fruition.

“Faith includes noticing the mess, the emptiness and discomfort, and letting it be there until some light returns.” ~ Anne Lamott, 2016

In writing this book, I realized it would not be complete without a chapter on faith. Growing up in a family where there was disdain towards anyone with any religious or spiritual beliefs, faith was a sticky topic for me. Of course, upon examination, faith has more than one meaning. Putting aside religion for the moment, one of Webster’s definitions is “allegiance to any duty or a person”, or another; “complete trust” (Merriam-Webster Dictionary). The New Oxford American Dictionary has this one also: “a strongly held belief or theory”. I realized, too, there are many kinds of faith: blind faith, unshakeable faith, to name a few. Along with that, we can have faith in all kinds of things besides God or a Higher Power: one’s own goodness, one’s marriage, one’s friends. We can have faith we’ll make through the night.

In the realm of chronic illness however, what do we put our faith in? Do we, for example, put our faith in our health practitioner, our new medication, our new diet? Perhaps, but living in the western world, where there are so many choices out there, it can be overwhelming – which modality should we trust? Because we so badly want to be well, and therefore want to believe in the experts and what they have to offer, we may end up putting our faith into someone or something, that if it doesn’t work out for us, can leave us disillusioned, and/or helpless.

What would empower us more in this regard, is to put our faith in what we know to be true. In other words, if I am going to a doctor’s office for the first time, I know I’m going to feel vulnerable, so I will bring my partner, or a good friend, or caregiver along – someone who’s got my back. Because it’s easy to get off track once in the office, I bring a list of questions, any forms I may need. I may even record the session so that I don’t miss any valuable information and so I can stick to my agenda and get the most out of that appointment. Then I listen to what they have to say and how they respond to me. Besides listening to this information, they are giving me; possible medication to take, tests, etc., I listen to who they are and how they came across. In other words, do I trust them? Are they compassionate (Although compassion is not always necessary for me to get what I want in the modality of treatment, it is an added plus, and is part of the care I ultimately seek.)? I also ask myself if their response to my situation reflects an understanding that PTSD is a part of what I need to be treated for, as well as the neurological part. Do they hear I am sensitive to medications and that I want to start on a small dose, first? Essentially, what I’m putting my faith in is myself. I am using my experience and my intuition to determine if this is the right person for me to work with and if I believe what they are offering me is something I think could help me.

I learned to do this based on past mistakes and experiences. I could tell you many stories of what not to do, but I will recall only one, here. One time, many years ago, I made an appointment with a neurologist that lived nearby and had been recommended to me. It had been years since I had contacted a neurologist, because I had wanted to explore more alternative and natural choices, but I had been having partial seizures and they weren’t going away, and, as a last resort, I thought I might want to go back on medication, at least temporarily. Unfortunately, I went to the appointment alone. During the time I spent with him, he not only did not smile at me when we introduced ourselves to each other, but he never once looked me in the eye or made any real human contact with me. When he learned that I hadn’t been on medication for years, his tone was condescending and judgmental. I should’ve left right then and there, but I felt trapped and needy: to find and go to another neurologist would take time and effort; two things I felt I couldn’t afford. During his interview of me, he of course asked me about my symptoms. Because of my weakened state, as I described them in detail, I began to cry a little as it brought to mind all the difficulty I had been in for some time. I felt extremely uncomfortable doing so in front of this seemingly unfeeling man but found it impossible to hold back the tears. As I cried, he looked unconcerned, and continued taking notes, without a change in tone, an offer of a tissue, nothing. When I left the office, prescription in hand, I felt raw, exposed, unseen, and judged. Later, I was to find out that all doctors, at least during the time of his education, are taught to be detached from their patients, as to not become too involved. I believe a little compassion goes a long way, and that becoming skilled at being dispassionate can be detrimental to both doctor and patient.

Much later, I learned that he wrote in my chart that I was “emotionally disturbed”, which triggered a lot of anger in me: How is shedding some tears about one’s difficulty “emotionally disturbed”? Besides that, that kind of labeling had an effect on subsequent doctors; something I had to correct.

I learned a lot from that one office visit. I will never again go alone to a new doctor for the first time, especially a specialist and especially if I’m having a difficult time. That way, if I am too beat down by my symptoms to speak up for myself in ways I would normally, I have someone who will. I have also learned to look at my medical chart if I want, that it is my right to do so, and that I can clear things up if needed. I have learned, in essence, how to be my own advocate. I have learned to trust myself. In comparison to that doctor and the naturopathic doctor I am now seeing, I am treated with respect and compassion. I am asked about my emotional well-being, as well as my physical symptoms. If I am a little emotional, I am not ashamed because of it. I feel seen as a human being and not just another body showing up at her office. When I leave, I feel listened to and taken care of.

Blind Faith

Especially in the onset of our illness, we can be extremely vulnerable and uninformed, leading us to possibly act with blind faith. When we feel desperate or scared, we may make choices that end up creating more difficulty for ourselves. We can certainly have blind faith in doctors or practitioners, for example. We may take as absolute truth their diagnosis or recommendation without getting a second opinion or doing research on our own. We may, in our despair and brokenness, look for deeper meaning in our illness and turn to spiritual “experts” who abuse their power and wound us. We may get a psychic reading, for example, from someone who tells us that we are sick because we’ve embraced negativity and that all we need to do is to think positively, and in our fragile state we start to believe this is true.

Here is an example of blind faith: I once knew a woman I will call “Rose”. She began to have discomfort in her back, and, like most of us would do, she went to a chiropractor. After a series of adjustments, her discomfort only worsened. She then tried other practitioners; at first, only alternative. She was a true believer in the power of positive thinking and used affirmations as a daily practice. She had no doubt that she would return to perfect health. Yet, her condition worsened. Friends and family started to worry and encouraged her to seek out standard Western medicine and get some basic blood work done. She gave in, eventually, and it was discovered that she had bone cancer at an advanced stage. Undaunted, she continued with her affirmations and “knew” she would cure herself. After about a year, she died from the cancer, still, I was told, believing she would live.

It is one thing to have a positive attitude, and, since miracles are known to occur, it’s good to have an open mind to all possibilities. But it’s another thing altogether to live in a fantasy world with rose-colored glasses on, believing that only the outcome we want is one that will occur. After all, we will all die someday. If Rose had been willing to take off her own rose-colored glasses, she may have been diagnosed early on, and therefore, been able to get treatment and live a longer life. Or, barring that, she may have died facing reality: that her time on earth was coming to an end and to prepare herself emotionally and spiritually for that outcome.

“Yesterday’s faith does not wait for you like a dog with your slippers and the morning paper in its mouth”. ~ Anne Lamott, 2014

Losing Faith

What happens during those times when we lose our footing and we stumble or fall? What happens if we lose faith altogether? We may lose faith in our practitioners, our health regimen, or simply, if we’ll have another “good” day. We may lose faith in our body’s ability to heal after we get our test results back that reveal that cancer had returned.

This may lead to times when even greater doubt sweeps in and our spiritual beliefs are challenged. Suddenly, all the practices we used to cherish seem forced or uninspired. Meditation seems too difficult to pull off, because we just feel too lousy to concentrate. Perhaps we heard that the spiritual teacher we put our faith in has done something we think is a little, or a lot, shady. Or, even though we may have had experiences that reveal to us that there is something greater than ourselves that we can depend on, when unrelenting pain begins to take over our body or meditation doesn’t work anymore, those experiences become dim memories. “God” or “Spirit” or “Higher Power” now seem like mental constructs that hold no real meaning or comfort for us. Perhaps we feel that God had abandoned us. We can’t pray, because we don’t know who we’re praying to, and we’re not sure anyone’s out there. Doubt and fear move in and cloud our thinking. Now what?

For most of us, this is a difficult and uncomfortable place to arrive at. We need answers, we need something to rely on! In our vulnerable state, there’s a tendency to want to grasp onto something and yet there’s nothing there. This can feel confusing and frightening and leave us in a fragile state of mind.

But, re-examined with an attitude of great care, curiosity, and, if we can manage it, a dash of humor, this place can begin to feel spacious and even freeing. If we don’t know, or aren’t sure, we find ourselves floating in this space of unknowing, with nothing to cling to – not God, a teacher, a diagnosis, or a plan. We are free of any constraints, or even beliefs. There’s an openness there, a freshness we can bring to our life. Sharon Salzberg, Buddhist teacher and author, speaks eloquently about the differences between beliefs and faith: “With their assumptions of correctness, beliefs try to make a known out of the unknown. They make presumptions about what is yet to come, how it will affect us. Faith, on the other hand, doesn’t carve out reality according to our preconceptions and desires. It doesn’t decide how we are going to perceive something, but rather is the ability to move forward, even without knowing. Faith, in contrast to belief, is not a definition of reality, not a received answer, but an active, open space that makes us willing to explore. While beliefs come to us from outside – from another person or a tradition or heritage – faith comes from within, from our active participation in the process of discovery”.

When looked at more deeply, this free-floating openness may feel familiar – we may have come here before. We may have come to it for other reasons than our health or crisis of faith. Maybe it happened the first time we developed strong feelings for someone. We didn’t know what to expect – we never felt this way before! Maybe we weren’t sure how the other person felt and that made us feel vulnerable. Now, we realize, we are experiencing that same sort of vulnerability – we’re not sure of anything! We may have developed new symptoms and have no diagnosis, or feel conflicted about our spiritual beliefs, but in exploring that vulnerability, we also experience a certain kind of innocence. It’s as if we are looking at life with new eyes. If we look back on those other times, we can see that, eventually, we got answers. Eventually, we understood what was happening. We got a diagnosis. We found out that the other person we had feelings for felt the same way and we ended up developing a relationship with them. The unknown became known. This in-between place, where we float freely, is called faith. In other words,

“When you have come to the edge

of all the light you know

and are about to drop off

into the darkness of the unknown,

faith is knowing

one of the two things will happen:

there will be something solid

to stand on,

or you will be taught how to fly”.

                                                ~ Patrick Overton

Meanwhile, while we take that leap of faith, we are in that between place, whether waiting for test results, wondering if we should see one more practitioner, or struggling with our spiritual beliefs, what we can always rely on, what we can believe in, is this present moment. We can always trust what’s right in front of us and bring our presence to it. By doing this, we fully commit our entire being to be with what is, right here and now, and come into our spiritual power. In other words, I can, without a doubt, know the texture of this moment: my fingers moving across the keyboard, the sound of my cat eating her breakfast, the openness of the white page before me. Or, if confusion and doubt are what’s arising, I can explore these mind states with the compassionate awareness I’ve come to know in meditation. I need no proof from any other sources to guide me. By becoming present, I am not borrowing beliefs from someone whose spiritual knowledge I perceive is more advanced than mine… Here is this moment before me with everything it holds. Understanding that, I believe in the next moment and the next. In this way, I am putting my faith in all these moments strung together. I know I can make it through this moment, which gives me the confidence to make it through the next. Just as in meditation, we build a kind of faith by strengthening our ability to sit with whatever arises; fear, impatience, the ache in our knee, etc., we begin to trust in our innate ability to handle the unfolding of our life, whether gracefully or clumsily, and always courageously.

Twelve-Step programs offer the sage advice “one day at a time”, but for people living with chronic illness, sometimes it comes down to one moment at a time. In fact, this is one of the biggest lessons and gifts of chronic illness and one of the highest and honorable spiritual teachings we can receive as human beings. Even if we’re doing better lately and not facing any new crises with our health, we don’t know how we’ll fare tomorrow or perhaps even later today (Of course, this this is true for anybody, whether chronically ill or not; it’s just that truth is more in our face than those whose health is more predictable).

By living in the moment, life slows down and we come to appreciate the preciousness of life in all its simplicity: sunlight streaming through colored glass, our heart beating in our chest, the sound of a hawk overhead. I remember, for instance, one time when I was recuperating from a seizure at my parents’ house, I would often lay on their couch and look out the window. Directly in my view was an elegant redwood tree. I would focus on this tree until it became a part of my healing. At times I felt I “entered” the tree and became its beauty as I lay there with nothing else to do, nothing I could do. To this day, when I visit my parents and sit on the couch and take note of that tree, I feel a special connection with it, as if we are friends.

This kind of slowing down can be applied even when we are doing better, it can permeate our life. If we are stuck in traffic, for example, instead of getting worked up about the inconvenience, can we take the time to watch the breeze move through the grass alongside the highway?

Here is my own story on faith and relying on the present moment: One day, I had to go to the next town, 30-minutes away, for a doctor’s appointment. Although I felt tired that morning, I felt completely able to drive. But, before I left, two friends of mine came over for a visit. Although I was happy to see them, the visit was a little chaotic – we hadn’t seen each other for a long time and there was certain time constraint, because I had to leave soon after they arrived. That led to all of us talking at once and interrupting each other in excited and sometimes loud ways that only close friends can do. When I left, I felt happy, but a little overwhelmed and realized that the visit had taken its toll on me. I questioned my ability to drive, for a second, then dismissed it, because just twenty minutes ago, I felt quite capable. Once in the car a short time later, I pulled to the side of the road, realizing that I felt too tired and unsafe to drive. Luckily, I had my cell phone with me, so I called my partner and told her of my predicament. She told me to stay put, that she would come and get me. While waiting for her, I began to feel slightly seizury. Not figuring I would need any, I hadn’t brought any anti-convulsant medication with me. I knew it would be about a half hour before she would show up. Because of the seizury sensations, I felt very uneasy and exposed parked there beside the highway all alone. I knew I needed to put to use my spiritual practices, but at the moment, they all seemed too complicated to do and involved too many steps. What came to me to do was the very basic meditation techniques of becoming present. Just the thought of remembering this brought a certain peace of mind. I knew, based on many experiences before in meditation, that just being aware of whatever came up in the present moment would stabilize my mind, and it did so in this case, too. Although I was frightened, by bringing my mind to the present, I was able to let fear float, allowing space around it, making the wait much more tolerable. This kind of remembering is based on repeated experiences that allow us to have faith in not only our practices, but in having the confidence in our innate ability to face whatever arises in life.

Crises of Faith

“As human beings, not only do we seek resolution, we feel that we deserve resolution. However, not only do we not deserve resolution, we suffer from resolution. We deserve something better than resolution: we deserve our birthright, which is … an open state of mind that can relax with paradox and ambiguity”.                                                                                                               ~ Pema Chodron

I have found in working on many chapters of this book that whatever the topic was, those topics happened to be up for me. This is one of those chapters. During the time that I started working on this chapter, I struggled with two crises of faith. Because of this, I sometimes felt anywhere from uneasy to plagued with doubt, lost, afraid, or like the rug was being pulled out from under me. The first aspect of faith that was being challenging for me was within Tibetan Buddhism. Although it is dear to me, there have been certain aspects of it that I don’t necessarily agree with. And yet, because I’m not an expert in the field, and consider myself a work in progress, I can doubt my own gut feelings and experiences, which can shake me to my core. When I began to look for answers by reading different books on Tibetan Buddhism, and talked with experts on the topic, I became further confused, as they didn’t all agree. Who was I to believe? At times, I felt as if I was up against dogma, yet I found it hard to trust my own instincts.

The second crisis of faith was my marriage. After thirteen years of partnership, we came up against issues that neither of us knew how to resolve. Were we going to end up another broken-up couple? Did we have whatever it took to make it through this particular hardship? As I finished touching up this chapter, we ended up healing and solving our problems, but in the process, I felt very lost, confused, angry, guarded and scared. Deep survival issues were at stake for me – if we broke up, I wondered how I would fare, as besides being my life partner, she can act as a part-time caregiver.

With both cases, remembering that with past experiences, some resolve would come eventually. I fell into that unknown space, at first with fear, but then I applied a certain curiosity to the state. When I didn’t project into the future about the state of my marriage, and when I let go of fear about my spiritual beliefs, I found myself free-floating in that space, and, when I really let go, it felt quite liberating, as if I were unattached to anything. Sure, I wanted my marriage to succeed and I wanted to resolve my conflicts with Tibetan Buddhism, but since I was up in the air about both, I sought to become as comfortable as I could in that in-between place; that place of unknowing. In fact, it reminded me a little of the one and only time I went skydiving. Determined to leave my fears behind (and attached to a well-seasoned professional), I jumped out of an airplane thousands of feet above the earth, into space.

When the parachute engaged, I felt this giddy sense of freedom, and intense aliveness as I floated towards the earth. When I landed safely on the ground, I was still high from the experience – a feeling that stayed with me for a long time.

Because the issue in my relationship did resolve, I felt stronger in my marriage than ever. With Tibetan Buddhism, I am not completely resolved, but am learning to trust my own spiritual experiences and validate them as real. When we face our fears full-on, when we don’t run screaming in the other direction, we discover new territories within that can expand our ways of meeting the unknown.

I’d like to end this chapter with a story about three blind people and an elephant. Each part of the elephant that they can feel is what they believe is the elephant in all its entirety. But only one feels its trunk, one feels its side, and one feels its leg. Each only knows a part of the elephant.

Learning from the mistaken conclusions of their perceptions and applying that to illness, we come away with the understanding that at least for now, we may not know the bigger picture, but sense there is one. That is to say, we may not know how we got ill or why, or if we’ll get better. We may not even have a diagnosis, we may not know if the regimen we take up will improve our condition, do nothing, or completely cure us, but we fumble in the dark with the piece of knowledge we do have anyway, trusting in the process as best we can. We may lose our way at times, forgetting that our part of the “elephant” is not the only reality and fall into the darkness around us. Because of that, we need reminding again and again, to have faith. When I need reminding, I rely not only on spiritual teachings and practices, but my partner, intimate friends, caregivers, and my therapist/spiritual teacher. Eventually, holding the hand of others, I become more confident facing the unknown, and the fears that often come along for the ride.

Prism

Refracted light is like the human soul –

it can never know its full capacity.

We come to this earth plane

again, and again

seeking wholeness,

not understanding that in these separated forms

we can only find limitations in our surroundings.

Like rainbows that splinter off of crystal

we are denser creations

born of that greater light

left yearning for what we remember.

Faith then, becomes the link

that reconnects us back to that wholeness,

that moves us forward through this life,

that flicker of memory

still lingering in our minds.

~ Maluma

 

Citations:

Chodron, P., When Things Fall Apart: Heart Advice for Difficult Times. Shambhala (2016).

Edison, M., Poems by Maluma (2013).

Lamott, A., from @ANNELAMOTT tweet November 16, 2016.

Lamott, A., Small Victories: Spotting Improbable Moments of Grace. Riverhead Books (2014).

Maluma’s Leap of Faith personal video. Clips (edited). Original video NorCal Skydiving.

Merriam-Webster Dictionary from https://www.merriam-webster.com

New Oxford American Dictionary, 3rd ed., 2010. Oxford University Press.

Overton, P. – from QuotedHD  http://www.quotehd.com/quotes/patrick-overton-quote-when-you-have-come-to-the-edge-of-all-light-that-you-know

Salzberg, S. – Faith: Trusting Your Own Deepest Experience. Riverhead Books (2003).

Links for meditation:

https://www.pocketmindfulness.com/6-mindfulness-exercises-you-can-try-today/

https://psychcentral.com/blog/1-minute-mindfulness-exercises/

https://www.headspace.com/meditation/body-scan

https://www.headspace.com/meditation/sleep

https://blog.mindvalley.com/best-guided-meditations/

 

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)

 

Soul Mates

You are all my soul mates.

I cannot live without the

light that comes from your eyes.

If even one of you were to

turn away, I would not be able

to find my way Home.

 

So please, as tempting as

it may be, do not hide in

the cavern of dark secrets

and self-loathing.

I need you. You need me.

This is the raw Truth, my Loves.

 

I have tried many times to

go through life with only

a few cherished friends,

but each of you is essential

to me, and I know now

the same is true for you.

 

If we don’t realize this,

the Candle will either go out

altogether, or only flicker,

and not become the Beacon

it was meant to be.

 

Have I told you that

I need someone every night

by my side so I don’t die of fright?

Come close –

no closer still –

tell me your pain,

and I promise you,

I promise you,

I will not run.

 

My arms are spread out

like magnificent eagle wings.

I long to enfold you

in my wide wild embrace –

I am so eager to remind you

we are One, we are One.

by Maluma