A Word or Two on Surrendering; Story on Surrendering

There are times when dealing with our health concerns that surrendering comes into the picture and becomes a quality that would serve us well to cultivate. When we are waiting for our test results from the laboratory or wake up with a migraine on a day we planned to get a lot done, we learn to give up control and let go. We have learned from the past that pushing ourselves in this state only increases our pain and that worrying about the outcome of our test results only causes us more distress. Often, excruciating symptoms can bring us to our knees and give us no choice but to relinquish control and surrender.

The act of surrendering is a humbling one. We are reminded that something bigger than ourselves is holding the reins and that by recognizing this, we find a way to allow our life to unfold, instead of forcing our will onto it. Twelve-step programs have developed the slogan “Let go and let God” and turning it over to a higher power greater than oneself, when we end up getting too much in our own way to do us any good. For those uncomfortable with the word “God”, they can exchange it with the concept that we are not always completely in charge of our circumstances and may have to put into place a different way of handling our present challenges, than worry and agitation.

The act of surrendering doesn’t mean we roll over and give up and do nothing. It means we allow energy to move through us and not manipulate it, thereby allowing The Great Mystery to unfold and leaving room for spirit to come into our life. When we become open like this, our intuition can be tapped, new solutions can come to us or just the understanding that for now, maybe all we need to “do”, is rest or putter around in the garden that day or get some support from a friend.

Numerology Guidance Cards by Michelle Buchanan
Surrender

Surrendering control may be something we have to do over and over again, if we are particularly anxious; like waiting for those test results. Surrendering takes practice like any other spiritual discipline and we may need constant reminders. We may notice that the way we are going about finding an answer to resolve our health issue has become too obsessive, i.e., going from one practitioner to the next without taking time to reflect on why this might be happening in the first place. It may be better for us in this case, to slow down a little and recognize that underneath this behavior is fear, and we might be better off to explore that fear and see what that has to teach us, rather than go about our health care in a frantic, grasping way. When fear rises again and again, surrendering can become the anecdote that calms us down.

 

Story on Surrendering

When I was in my twenties, I lived communally on land, with a small group, during the 70’s. I loved living there at the time, but for various reasons, the community was breaking up and individuals were moving on. I was unhappy with this idea, but I had no choice but to move on, too. I realized I relied on the others to be there in case of a seizure, but who could I rely on now? On top of that, with the stress of the dissolvement of the group and the stimulation that came from living communally, I had had a few seizures and came to the conclusion that I couldn’t take care of myself. Appallingly, it seemed to me, my only option was to pack up all my things and go stay with my parents – the very people whose way of living I felt estranged from and who I felt lived the opposite to what we had been trying to create on land, where I had been living. Not only that, but I needed help packing and couldn’t fly on my own – my mother had to come and get me! For a young woman out in the world on her own, developing new ideologies with others that branched away from the norm (with a lot of judgement towards others, I might add), this was beyond humiliating!

Once at my parents’ house, it took months for me to fully recover. Not only did I have to put aside my youthful ideals, but I had to let go of the elemental independent way of living we all usually take for granted. Most of the time, I couldn’t prepare meals for myself; my mother did. I couldn’t drive, so I had to rely on my father to get anywhere. Some part of me knew I was fortunate; that I had loving parents who could take me in, but my false pride wouldn’t allow a full appreciation of this fact. I chafed against their ways that I perceived as outdated and steeped in sexism, but felt I had to keep my mouth closed, because I was reliant on them for my basic needs. At times, I resented this, making it easy to resent them.

Although I wasn’t very good at it, I was forced to surrender. I had to put aside my beliefs and my prized independence in order to get my needs taken care of. I felt ashamed and humiliated to be in this position, and because of this, couldn’t fully give in to the feeling of surrendering, which made everything that much harder.

More than twenty years later, things have changed a great deal. I am more apt to be honest with myself about my limitations and needs, although, there often seems a layer of resistance before I let go and accept my circumstances. I no longer carry around the arrogance I used to have in my twenties that made me feel I was somehow more evolved than others. Having had to, time and time again, ask for help over the years, has led me to replace humiliation with humility and a letting in of others in my life I may not have otherwise, which expands my spiritual path that much more. When we only let in those who have the same ideology and lifestyle as ours, we develop a narrow way of being and living. I believe I have a  more developed sense of gratitude in general, because of having to let others in, by way of caregiving for me. All this I’ve gotten from the gift and act of surrendering.

 

Citations:

Buchanan, M., Numerology Guidance Cards. https://www.michellebuchanan.co.nz/numerology-oracle-cards/

Hazelden Betty Ford Foundation. Letting go of our need for control frees us. https://www.hazelden.org/web/public/hff11022.page

 

 

 

 

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/

 

I Said I Would be Honest

I said I would be honest

So here it goes:

This is one of those days.

Those days I feel seizury,

which doesn’t mean I’ll have a grand mal seizure

but will feel like I can’t figure things out.

I will slur my words and feel blurry

and want to cry and feel like

I don’t belong in this world

and why am I here, really, why???

I am not suicidal, but I hope I don’t

live a long life so how’s that for honesty?

This blog helps me gives me purpose and

meaning and I just hope it helps

someone, even just one person.

Today is a “TV day” where I can’t

do much but watch reality shows and

shows that aren’t too complicated.

I have a caring caregiver here (better

than an uncaring one!) and so that

makes things better. I have a partner

that suffers too, who loves me and

has loved me for years and will love me

for years to come. There are three kitties

too: Reggie, Zoe and Simon, all of who

I adore, so I guess, why complain?

But today, right now, well I wish I

could feel better and think better and

SLEEP!!!

and I know when I bring my attention

to the present moment

Right here, right now

I am ok

this epilepsy, insomnia, anxiety

can bring me to my knees

again and again

so while I’m here

I might as well kiss the earth

and say “thank you”

which breaks my heart open

which teaches me how to love

which is why we are all here.

~Maluma

 

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)

 

Another Excerpt from the “Book” I Never Finished: Chronic Illness and PTSD

All people I know who have chronic illness challenges struggle at some point or another emotionally. There are times when our emotional suffering can overtake our physical suffering. Fear can grab a hold of us and spiral out of control, turning into anxiety or panic attacks. Thoughts turn dark and the spiral becomes depression or despair.

We’ve already explored the difficulties one faces at the onset of our illness; loss and the fears that often go hand-in-hand with it (refer to my previous post of April 8, 2019 Excerpt from My “Book” “Introduction and Initiation to Loss”). But, there are other scenarios that can cause difficult emotional responses, making it hard to maintain our equilibrium. One might be that we’ll go through a period of time when our symptoms are minimal and we have more choices available to us, our life opens up again. We might start to make plans, we may think we can get our career back on track. We may even believe that we are restored to perfect health, never to deal with the illness again. Then gradually, or perhaps suddenly, something shifts again, and we take a turn for the worse. It’s easy to see that these sets of circumstances could trigger our old fears of isolation and dysfunction or launch us into depression.

But sometimes, even if we’re doing okay physically, intense, dark emotions seem to rise out of nowhere and we are carried away by despair, hopelessness or dread. What’s going on here and what can be done to ease our minds and hearts in all types of scenarios?

First of all, it’s important to understand that because of the intricate relationship among them, when the body is in a weakened state, so is the mind and therefore, the emotions, creating an atmosphere that most of us find very challenging. I notice this with able-bodied people as well and more clearly, when they get something like the flu. At first, they’re unperturbed, and take remedies or pills and rest, knowing it will pass. But then, as the days go by and they realize this particular strain of flu might go on for a few days, they become grumpy. But then, if the flu goes on for weeks and the symptoms are difficult; high fever or stomach cramps, accompanied by sore muscles, for example, their usual cheery and determined disposition changes. They become a little nervous: When’s this going to end? They exhibit insecurity and question their significant other: Do you still love me? As people dealing with chronic illness, our challenge is on-going, which includes our emotional and mental reactions to our ill health, as well.

Secondly, it’s important to understand that some of the emotional and mental challenges that arise for people with chronic illness can be symptoms of Post Traumatic Stress Disorder. This understanding took me years to realize. It wasn’t until I saw a tv program about a Vietnam vet with PTSD, that I recognized myself – a lot of his symptoms were similar to mine: insomnia (although I believe mine is partially due to my neurological makeup), hypervigilance (for me, during the night: what if I have a seizure?) and occasional panic attacks (heart pounding, stomach in knots, persistent anxious thoughts). To come to the understanding that I have PTSD, was an enormous revelation for me and extremely validating.

In the past, when I exhibited these symptoms, I felt a certain shame with it: Why am I so weak-minded? Why can’t I sleep like everyone else? Why am I so fearful? Now I had a name and a reason for these particular reactions, which made me feel better about myself and therefore, more compassionate. I understood that for me, having grand mal seizures are traumatic, and that even though it’s been 20 years since I last had one, the fear of grand mal seizures is still great.

Because of this understanding, I could become kinder to myself and admit, with less shame (I’m still a work in progress), that I needed help. So, I hired caregivers. This way, at night, for example, when my anxiety becomes too much for me, when depression enters the room once again, I don’t feel like I have to “power through” – I can get up, wake up my caregiver and we can talk, have a cup of tea, and I can calm down more, and maybe even laugh!

Here are some of the classic symptoms of PTSD:

Emotional expressions

irritability, angry outbursts, guilt, shame, despair, disgust, anxiety, panic, nervousness, sadness, loss, depression, and overwhelm

Overall symptoms

sleep disturbances, hypervigilance, difficulty at work, impulsive destructive behavior, problems with concentration, strained relationships, changes in personality, loss of identity and sense of purpose

Physical symptoms of PTSD

headaches, colitis, and respiratory issues, ulcers

Of course, some of these things could be attributed to other causes, as well. It’s probably best to talk with a practitioner who is familiar with PTSD in people who are chronically ill, but if you have some of these symptoms and something resonates in you that their cause is PTSD, then I’d say chances are you are right.

As people living with chronic illness, we can feel we no longer trust our bodies, that they aren’t safe or reliable. This feeling affects the very core of our being. We feel unprotected. We live with the fear of a recurrence of our worst symptoms. We sometimes feel unsupported and misunderstood by our friends, family and doctors who think it’s all in our head, or that we aren’t trying enough to get well. This can further compound our doubts, fears and shame about our innermost selves and cause further isolation from community and society at large. Our financial position may change drastically, which affects us on a core survival level: How will we pay for any medical help? All this can be very traumatic and shouldn’t be minimized.

A direct quote from Counseling and Psychotherapy reads:

“A recent study showed that people whose worst event was a life event such as chronic illness, had more PTSD symptoms on average, than people whose worst life event was typically traumatic, such as an accident or disaster”. I feel the truth of this statement in my bones and I believe the reason for this truth is that our trauma is on-going, not a one-time occurrence.

According to studies, treatment for PTSD is multi-faceted, using a combination of education, medication, and therapies to address the effects. This is certainly true for me. In order for me to have any hope of even a fair night’s sleep, with my psychological and neurological makeup, I need a combination of hypnosis techniques, emotional support, medication and remedies. If you think you suffer from PTSD, it’s probably best to tell your practitioners (ones that understand this phenomenon) to get the help you need. It may take experimentation to figure out what works best for you, and what might make the best combination of therapies, support, medication and/or remedies. Understand that you may not ever “get over” the feeling of being traumatized but can look towards improving the quality of your life.

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.

Memory

I go to the hospital with my mother, scheduled for an EEG (electroencephalogram). Up to now, I’ve taken two EEGs and they have come up normal. This one is set up differently: the night before, I was instructed to sleep only a minimum, to be awakened at a certain time. Now at the hospital, lab technicians hook me up: small electrodes pressed into my skull, so I feel (and perhaps look) like a big pin cushion. Wires attached to each electrode go from my head to a graph, which records my brain waves. Then, they give me something for sleep and I nod off. As soon as I fall asleep, they wake me up, then begin their testing: flashing lights rapidly, in my face and telling me to breathe in a quick, shallow way, like a dog coming back from a run. Then, more flashing lights and continue with the breathing. I feel panic rise up in me, like a deer whose hoof is stuck in a fence and feel myself begin to leave my body. I grip the armrests of my chair as firmly as I can, willing myself to stay here, then fake the breathing I am told to do, knowing if I continue, I will surely seize.

After the test is done, they show me some of the results – the ink depicted the brain wave spikes so high that they’ve jumped off the page and onto their white coats.

I leave the building clutching my mother’s hand, so disoriented that I can barely walk out of there.

For many, many years afterward, I refuse to take another EEG.

Retreat

I am lying on this couch

looking out the same

window for too many years.

Or maybe it’s too many years

that my brain has been

like this: broken china

left on the floor, upswept.

The same redwoods outside

this window stand vigil,

silently witnessing me

as they have done for

too many years.

I withdraw now a little

from this sometimes

too painful world and

think this is what it

must be like to die –

a gradual retracting,

that final removal

from this body that

for now, sustains me.

~ Maluma

Vermont Memory in the 70’s

One day while living in upstate New York, I decide to go with a group of friends to Vermont to stay at one of their parents’ home, who are away for the weekend. I am excited about this, because it is a house in the country and it’s mid-October and I know the colors in the surrounding hills will be bursting with colors. However, as usual, I haven’t been sleeping well and so when my friends decide to go for a hike, I feel too weary to join them, and instead, opt to lie down and rest in one of the big, cozy beds.

I must have dozed off, because the next thing I know is complete disorientation and a sensation of being caught in between worlds – the living and the dead, you could say. I feel incapacitated by fear and that is all I know. I don’t even know my name. I look around me and I can’t recognize anything – not the floral bedspreads, the bedside lamps, the room itself. The fear is so intense, yet so familiar, and then I begin to identify its movement and texture and how it relates to seizures. Am I going to have a seizure? The idea of this further frightens me and I grab onto the bed covers, as if holding on to something solid will help me stay here instead of leaving my body. I struggle again, to make sense of my surroundings, but again, I recognize nothing.

I call out again and again, but there’s no answer. My panic rises as I realize I am all alone.

After a bit, I remember a phone number, but I have no idea whose it is; but in the midst of my intense confusion, it feels like a life saver. Luckily, there is a phone on the bedside table, and I find I am able to retain the numbers long enough and the ability to punch in the numbers, to complete the call.

Someone picks up. “Hello?” – a woman’s voice.

“H – hello?”, I say tentatively, “Do you know who I am?”

I have happened to call my parents in California and my mother immediately recognized my voice. It is a difficult conversation – for me, because I am trying to form thoughts to put into words, and for her, because she is 3,000 miles away and there is very little she can do to help me. Throughout our exchange, I realize that I had a seizure, not that I was going to have one – a phenomenon that repeats itself throughout my life. Although she cannot help me find out where I am, just knowing what happened and who I am is, for the moment, enough for me to calm down a little. Her voice is an anchor for me, and I hang on to it for dear life.

Soon afterwards, my friends arrive, and I sort out where I am and where I live and other basic information.

The rest of the weekend, though, is spent in recovery. I am depleted through and through. I don’t fit into the human realm, yet. I am just a wounded animal, licking my wounds – a scream lodged in my beaten body.

Partial Seizures

There are many different kinds

of seizures as there are words for

“snow” for the Eskimo.

Many are innocuous enough and

just drop by for the day –

although unannounced and

uninvited, of course.

But others stay for weeks and

are as benevolent as a dictator:

taking over and taking control,

demanding and commanding,

and disrupting the general order of things.

Some come with personalities as grating

as The Star-Spangled Banner sung off key –

please stop, please stop, please.

Or, one day I’ll wake up to a brain

like a Salvador Dali clock or

the Wicked Witch of the West wailing

“I’m melt-ing!”

Others manifest like three-day old snow

in New York City, pushed aside

by a snowplow,

another like a slurpy,

a green one perhaps –

gush, mush, slush.

Then there are those imperceptible blips,

like when your cell phone lets you know

your batteries are

running

out.

But-then-for-two-weeks-I-am-speedy-

brained-like-Roadrunner-colliding-with-the

Tasmanian-Devil

until I am

mentally spent

and then the

thoughts

go

slow-

ly

by.

What to do?

I can’t evict them.

They won’t go.

I’ve tried

They are like confused

and abused children –

neglected and unwanted.

They need to live somewhere.

So, I’ve taken it upon myself

to give them a home

in hopes that one day

they will grow up,

and move out,

and find a place of their own.