Wednesday, March 30, 2016

Solitude and Wisdom of Beauty During Suffering Inspired by John O Donohue

*POST EDIT: For those following our mom passed away last night. I hope to write a post about her soon as she was the glue to the family for us and she was our biggest advocate, accepting friend, and nurturing mom. All our love mom. xo.*

"There is the solitude of suffering, when you go through darkness that is lonely, intense, and terrible. Words become powerless to express your pain; what others hear from your words is so distant and different from what you are actually suffering.” 
John O'Donohue, Anam Cara: A Book of Celtic Wisdom
Many of my readers and friends surrounding are suffering. From disease and broken backs to financial situations to death of a loved one...Suffering abounds. As John O Donohue aptly remarks- our individual suffering is lonely, intense and terrible. There are no words for comfort or to convey our distress when we are in our darkest times. Yet, while we have breath we crave moments of beauty and light. We manage our suffering by balancing the life and wisdom of beauty. Sometimes we have to lose ourselves in this beauty, and at others we have to force ourselves to become acutely aware to our pain to find the source. "When we hear the word 'beauty', we inevitably think that beauty belongs in a special elite realm where only the extraordinary dwells. Yet without realizing it, each day each one of us is visited by beauty. When you actually listen to people, it is surprising how often beauty is mentioned. A world without beauty would be unbearable....When we hear some beautiful piece of Mozart or admire a wonderful building, we suddenly become present in ourselves. That's unusual nowadays because dishevelment and distraction have become an art form. "John O'Donohue

Being present in ourselves is both brutal and beautiful. When grief grips presence feels impossible, and when joy abounds our essence can feel constrained. Beauty is not a pretty asymmetrical face, though to the eye that loves that face, it IS, but beauty is deeper. Beauty is a home coming. "The human soul is hungry for beauty; we seek it everywhere - in landscape, music, art, clothes, furniture, gardening, companionship, love, religion, and in ourselves. No one would desire not to be beautiful. When we experience the beautiful, there is a sense of homecoming...The human gaze is not the closed, fixed view of a camera but it is creative and constructive. Both the gaze that sees and the object that is seen construct themselves simultaneously in the one act of vision. So much depends on how we see things. More often than not the style of gaze determines what we see. There are many things near us that we never notice simply because of the way we see. The way we look at things has a huge influence on what becomes visible for us. If a house has been closed up for a long time, a film of dust settles on the windows. Decayed residue gradually manages to seal out the light. When we go into such a place, we smell the dankness of sour fetid air. The same thing can happen in the windows of the mind."- John O Donohue.
From Mona Lisa smiles to Cheshire Cat grins, the world is found within perspective. We see the story we tell ourselves. To some the Mona Lisa is sneakily hiding secrets, to others she is simply giving a smile with no guile. The Cheshire Cat can be scary or wise, terrifying or helpful...or perhaps a mix of both. Likewise, at times, terrible suffering can also be accompanied by bits of beauty. Tiny flickering moments of hopeful awakening or connective lights reach deep within to gently warm back sanity. While there IS great darkness abounding and we DO need to face our grief before we travel onward, this is only part of our journey. When grief returns to shadows we can finally see that the biggest beauty we own is our choice of lens. Sometimes that lens means bleak darkness. Each expression is legitimate. We determine what we see. "No one else has access to the world you carry around within yourself; you are its custodian and entrance. No one else can see the world the way you see it. No one else can feel your life the way you feel it. Thus it is impossible to ever compare two people because each stands on such different ground. When you compare yourself to others, you are inviting envy into your consciousness; it can be a dangerous and destructive guest.” (John O'Donohue, Anam Cara: A Book of Celtic Wisdom)

"We live between the act of awakening and the act of surrender. Each morning, we awaken to the light and the invitation to a new day in the world of time; each night, we surrender to the dark to be taken to play in the world of dreams where time is no more. " -John O'Donohue.  In this tangible life, there is both darkness in light. Both require surrender and awakening. An easier example of this analogy would be in friendship. "Every friendship travels at sometime through the black valley of despair. This tests every aspect of your affection. You lose the attraction and the magic. Your sense of each other darkens and your presence is sore. If you can come through this time, it can purify with your love, and falsity and need will fall away. It will bring you onto new ground where affection can grow again.”  I have had friends whom I thought I would never speak to again. Each of us took turns in darkness...we lost the magic collectively and individually. I'm not talking about the turning of time when friends need to take separate paths. My cousins are friends and sisters for life...yet we have had moments when our affection was tested. Luckily, our love was purified after time healed...and honouring the darkness was part of this journey. The magic grew from beauty and life. There is hope even in this.

YET, if you are reading this and not ready to embrace the beauty and magic, and the brutal is just so engulfing - know this (parenthesis mine):
"You are not obligated to do everything a healthy person does (in mind, emotion, or in body- or a happy person.) You are NOT obligated to be an inspiration. You are not obligated to hide your illness (or grief) in order to make people comfortable. You are allowed to know your limits. You are allowed to have bad days. You are allowed to stay in bed if you can't get up to do anything but go to the bathroom. It is not our fault if other people leave you because of your illness (or grief.) It is not your fault that you are sick (or sad.) You don't have to apologize for something that is out of your control."- Unknown quote

The integrity of your soul matters. Feel what is true to you. Think lovely thoughts but darkness is allowed too. You are allowed that mystery and authenticity. It is it's own beauty. "When you acknowledge the integrity of your solitude, and settle into its mystery, your relationships with others take on a new warmth, adventure and wonder." John O'Donohue. This includes the relationship with yourself. The quote below can also apply to yourself. Love yourself this avidly and then love others in your circles with the same warmth and wonder.

Beauty can not be a constant companion. Nor can inspiration. To hold on avidly and desperately to beauty is futile. However, beauty is a visitation that helps us choose who we are and where we will go..."What are you going to do with all that darkness? Find a way to glow in it."- Amanda Torroni. "Beauty does not linger; it only visits. Yet beauty's visitation affects us and invites us into its rhythm; it calls us to feel, think and act beautifully in the world: to create and live a life that awakens the Beautiful. A life without delight is only half a life." John O'Donohue

Wishing you wisdom, solitude and beautiful moments during your darkest hours. xo.

**All quotes of John O Donohue taken from my two favourite books of his "Anam Cara" (which we named our home after) and "Beauty the Invisible Embrace". Links to the books on my library page.

Song: Cry Ophelia- Adam Cohen. (A friend gave this on a mix tape in high school and the first time I heard it the lyrics wound their way into my melancholic teenage soul.) 
Desperado - Eagles. ( Sorry for the weird image...The Eagles knew how to write a tune. Their songs capture my mind with their engagement of imagery, wisdom, and soul. It's a song that reminds me about perspective...that my time is still here and it's not too late until it is.)
Lost- Michael Buble. (I first heard this song after I had my miscarriage. I listened to it over and over again. The tears would always slip when Michael would croon "Baby you're not lost.")

Saturday, March 19, 2016

What to Give to A Grieving Family? How to Support Families of Patients in ICU/Hospice/ Death or Trauma. A Practical Guide to Care for Intensive Care Unit Patients and Families.

*This post can also be transferred over to helping support people grieving in death or in a trauma situation too.*

My Husband's mom is on life support, has had blood transfusions and been through what I would deem hell on earth enduring horrid procedures and invasive treatments. Just two weeks ago she was feeling sickly but one of the most vibrant people we knew. To see the dramatic change was especially shocking for my husband. It's not easy to see the people we love hooked up to machines and fighting for their lives, however, I find it easier than seeing them conscious struggling to deal with pain. Being in the ICU has had me thinking about how people can help support families of ICU patients. This post also applies to Hospice situations. The following list has ways of support, numbered in order of importance, if you are wondering how to help or aid people in these circumstances:


1.) Financial.

For some, the thought of giving money may feel heartless or cold because most people want to be in on the emotional aspect of support. Some people do not love to throw cash at a situation and not see results. However, this is the BEST way to support families of loved ones in ICU. Unless there is a child under 18 in ICU, there are not free supports to help the spouse or loved ones stay the nights. Sometimes the medical staff will allow a chair to be pulled up to spend the night, but when the ICU care lingers on for weeks at a time, this isn't feasible. Hotels will give 20 percent off, if there is a signed form from the hospital, but even within that, it adds up fast after days upon days. Most people do not have the budget for constant hospital trips, hospital parking (which is INSANE), food, work days taken, and fuel to travel back and forth. (This also applies to Hospice.)

This is also a good idea during a death. Death is expensive for the family and it's the last thing they need to think about. In order for the spouse or close loved ones of the family to be a part of things, they need to know they have the finances to sustain the support. Our father in law is retired and savings are meant for living costs which makes this situation tougher. Each time we have gone up to the city hospital to ICU we try to pay for at least one of his meals and bring him anything he would request at our cost if possible. We know others are doing this too, which helps, but he could use more support. We have contacted his church and they will also help him if possible within the next few days.

Coming from our situation, as the son and daughter of the person in ICU, we have also not been able to go up as much as we would like due to finances. My husband has already taken three days of work to be a support and also for his own sanity as he wanted to see his mom every day. We have gone up consecutively three days in a row. My husband is very close to his mom and they both have a deep understanding of each other, especially in the last few years. Being the baby of the family, his mom is the closest one to him. For us, the money for the last three days of work lost, childcare, fuel, food and parking has already equalled a significant loss. It was worth it for us but we can not imagine how hard it must be for people who have to be there constantly. We are very grateful we have such a supportive work team and site manager for my husband. Understanding goes a long way.

When you are not worrying about money, it is easier to be nourished with food and rest, so that one can support to the best of their ability, the person in trauma. Whether it is gift cards to gas stations, food places ect, prepared meals within the diet of the person affected or nutritious baking and snacks to carry along, or cold hard cash...this is THE most helpful way to carry a family through ICU. If you know the spouse or closest member to the patient, give money to them. If you are closer to the children or secondary people to the patient in ICU better, give money to them because if each person does this accordingly, each person will be supported and able to be a better support to each other without the stress of meeting basic needs. This also applies to family of a deceased loved one.


2.) Emotional care, prayers of support, and words of affirmation. 

People who are alone in ICU with no other family would put quality time ahead of this and need others to show up to be with them as second instead of third (which I will get to in a minute.) However, people who already have a lot of family showing up don't need the chaos of more people speaking into the situation. But they do appreciate words of support and care. ESPECIALLY if their nutrition, sleep needs, and care of their body is being met (see number one again.) THEN their soul care can commence. If number one is not being met, number two is very hard to process or absorb. But number two is important in the form of cards, quick texts of prayer/thinking support, words on Facebook the person can catch up on when time is available, and garnering encouragement from others for the person going through this is invaluable.

3.) Quality Time. 

Obviously this depends on personality as Introverts will only want one or two people keeping them company and spelling off shifts in ICU. Extroverts may want their whole family and even some friends present as much as possible. Someone in the middle may need a varying of both. My father in law falls in the middle though he can be more introverted, he also appreciates people around him. He needs down time but he also really enjoys a lot of support. Feel out the situation accordingly. Quality time is offering to bring the family food, taking turns sitting in ICU with the patient while the other gets rest, taking turns learning the details of the situation to pass on to well meaning acquaintances who need updates (because it is hard to absorb in the moment), and tag teaming the nurses and doctors for information and support. Depending on the person, hugs and a shoulder to cry on will also be valuable. A general rule of thumb is if they are a hugger and touch freely in most situations YOU initiate the touch, if they normally are NOT, let THEM initiate but be open to it or only slightly move in and allow them to make the rest of the movements. Only break this rule if you are a spouse, sister or especially close to the individual. If you are close, even those who are resistant to physical touch may appreciate this action without being asked but if they pull away, allow them their space.

4.) Acts of Delegation and Service:

Time starts to lose meaning in the hospital. Often the main people involved are consumed by their presence in the hospital and do not get to their homes for days. Checking their mail, taking out garbages or doing basic life upkeep at home doesn't happen. If you live near to the person offer to do one of these things regularly until time of recovery. Make it something you know you can do. If you are a trusted friend, the mail would be a great thing to do, and weekly bringing them the envelopes that look most pressing and putting any junk in a pile on the table for a later date or watering plants. If you are a neighbour or close living friend make sure their garbage from before has gone out. Other examples would be checking up on the home, doing laundry, taking care of the pet, having freezer meals, or offering to be a delegate for other responsibilities.

5.) Follow Up

A lot of people tend to rally together for the most dramatic part of the process when someone is admitted to ICU, impending death or death, or the life support moments. While this is fantastic, sometimes the hardest part is actually later. If there is a death, it is the grinding normality later, after the highs of emotion and drama, that need more support...and that is when everyone else has already forgotten or moved on. If there is recovery, people forget the trauma involved on the patient, that their mind will be forever altered, and that the experience changed everyone involved. Often it's the time AFTER a patient is home that they need support, that they want to see people and need meals brought to them. They are still weak, have been through so much pain, and don't really remember the people who were there during their darkest moment. To them, the darkest moments seem to be in normality. It takes months for an ICU patient or a loved one after death or the hospice experience, to get back on track. For instance, in our mother's case, there is only a three in ten chance of her surviving the first year due to re- occurrence in her certain situation. Obviously that is not something we are dealing with now nor have we informed her spouse of those odds. When speaking to the nurse and doing our own research this information was at hand. If she makes it through she has a long road ahead. She is a fighter but it helps to have support during the first year emotionally and physically to keep on fighting. Pain can become old hat to those not suffering it. For those in chronic illness it is easier to understand that pain is always fresh to the one experiencing it and it tends to require moments of respite and understanding. (Post Note: Our mother did pass away within the month of this post.)

If you are a loved one or acquaintance who wants to support families who are going through trauma, a death or ICU, I would advise for you to think clearly on what you are able to give and divide it in half.

Cutting your Ability to Support in Half. For During the Difficult and AFTER the Major Moments: 

Do half of what you can give in the high intensity moments, and give the other half once recovery or or funeral is over. This way the patient and family gets some support in BOTH circumstances. If you can not give money but have some extra baking, take it to the ones whom you know the most. If you have extra money give some to the person most affected and if you have a bit left over, give to the person you know best in the situation. If you can not possibly give anything physical, and are not near to the situation, send prayers and thoughts, or save yourself for a time you can be near the person involved to listen to their stories later when it is needed. If you are a far away friend that can afford to send the gift of music through a ITunes transfer card, coffee vouchers, department store gift cards for basic needs, or some sort of sensory treat- don't be hesitant to do this- beauty is important too.

Taking Care of Your Needs too and Personal Boundaries:
Every day life is hard. A lot of us can not be there for everyone all the time. All of us share the human experience of trauma or heartbreak at some point. It is ok if you can not speak into an other's situation because you have enough on your plate. You also need to take care of your needs. Sometimes we just can not think of one more person or meet one more need, even if we have the resources. Let go of that guilt. As an INFJ I tend to want to save the world. I have really stepped back from that the last few years and have created boundaries to make me more accessible to the people directly in my world. However, at times I will send my friends a care package or something tangible, but I can not do it as often as I used to. The one aspect I will always bring to the table is a counselling spirit or a listening ear. I try to use that gift well and maximize who I am, where I am in the world, and the immediate circle I affect and then work out from there.

What I am saying, is that the more you listen to your heart, in both giving and boundaries, the more you will meet the needs around you that are needing you the most. It is ok to let go of the ones you do not. Some people need to work on helping more and others less. Know thyself to help aid others.

May you find solace in support and in your self in the deepest darkest moment. May you have moments of lightness...a smile, a warm breeze, and nourishing food even when your heart is breaking. And I hope that you know, that in each circumstance you are giving by existing. Make use of that.

Song Choice: I felt the Fellowship theme from Lord of the Rings was appropriate as we are all on this journey. Forgive my geeky LOTR analogy, but each person on that journey to save middle earth, gave their own unique gifts to the situation. Without them as individuals we would not have had the whole. While Frodo was the main hero in the story he was supported by ever steady Sam, insightful advice giving Galadriel, wise Gandalf, humourous Pippin, warrior and kingly Strider, and a multitude of other players that helped keep the darkness at bay. The same can be said of each of our roles in the every present darkness of life. We can make a difference simply by knowing ourselves and what we bring to the table. Do not underestimate your story. Life is a drama and better than a movie. We can be part of the beauty as well as the pain.

This is a upbeat song choice so do not listen if you are not in that space...I just thought I would also add some hopeful happy to the post:

Thursday, March 10, 2016

Ferritin, Anemia, Lyme's and Struggles

  • About the picture below: It does not match the post and yet it does...I took it on a day I was feeling better and wanted to remember that I can celebrate captured essence, seeing what my kids see, selfie, smile wrinkles (man they are getting deep!), dimples, lines, perspective, and because black and white is more forgiving.
    I was worried I had dementia. My memory has struggled to keep people's names, events and schedules organized. In the past I have struggled with memory due to executive functioning fails and also sensory overload triggering trauma which also erases memory. I have had memory loss due to hormone imbalance and insomnia but I had not experienced the level of memory struggle that the last six months have entailed. I brought it up to my doctor and therapist and apparently it is from lack of REM deep sleep as well as chronically low Ferritin.

Memory affects all areas of life. I was starting to feel depressed. I realized I was repeating conversations with people that seemed completely new to me. In the span of an hour I would ask my husband the same question five times. When he said I just asked him that five minutes ago, I could not recall ever mentioning anything or saying my own words. Struggling to communicate effectively and have the retention for important details is a crucial part of everyday life that I previously took for granted.

Recently, I had my first good sleep, thanks to my therapist's strategies. The following day I caught up on chores, chatting with four different friends, and visited with my grandparents. On the way home from grandma's house I started feeling edgy. My thoughts were mixed up and I could not explain how I was feeling. My husband checked in a bit and tried to get me to come into the present, but I just couldn't. My brain checked out. In the early morning hours, after he was finally asleep, I started coming back to myself. I felt horrid for being so out of it and I could not explain what happened. I had a good day after all. So I googled "burn out." It wasn't specific to my journey because I have a fairly commitment free and stress free life. I googled "physical burn out" instead but my life circumstances still did not match, so I typed in"physical exhaustion" and of course iron came up again. Anemia is my ever present health condition that I trivialize and forget how important it is to normal functioning.

Anemia is my "normal." I fluctuate in my levels and often it's just a fact of my life. Whenever I end up on a site that explains the dangers of it, the seriousness of chronic loss, and potential organ damage with low Ferritin, I am shocked. Every time. Which is baffling because I think I look it up about every three months when I am near the end of my rope again. Why does it shock me? 

A normal day for me consists of many breaks to lie down to catch my breath. I need about twenty minutes for every couple hours to re group and feel like my body can function again. If I don't take these breaks I start to feel nauseous, muscle tightness, out of breath, and slightly panicky. I don't think much of it until I have a busy day and have to skip my normal rhythm. If I am sitting down for hours I am wasted. I need to actually lie down for everything to function optimally. One would think that the seriousness of anemia would not shock me when my day has to be like that, but it does, because it's simply my life. My life is set up optimally for me to be "sick" or "chronically ill." I home school my children and my husband is the main provider. I also provide by applying for certain programs, tax rebates ect. but he is the one who goes out of the home everyday. I am lucky because I can be weird, odd and quite sick and it all goes under the radar. I can effectively school my children and on my horrid days they school themselves or take a break. They also are my chore support which I think will aid them in their adult days. They know how to do each chore. I do have to go over most of them, but they take the brunt of the exhaustive ones like mopping. I can't mop because if I do I feel desperate for oxygen. While I am a feline personality and can laze around comfortably for hours, I am not lazy. I LOVE cleaning my home on most days and I LOVE to do lists. I am not type A but I am not a slouch either. My bohemian ways enable me to be accomplished and able to BE. However, sometimes the health factor throws my rhythm off balance.

Truthfully, it's a roller coaster ride. Some days are "normal," some are awful and the rest are spent in a limbo land of fluctuation. It affects every area of my life but it gets redundant to think about it or talk about it with others because it has been YEARS of my life. Yet, there are some moments when it all catches up to me and I want the world to know about Anemia to prevent it in themselves and to give me the consideration I need to cope with life.

The Dementia like symptoms scared me because untreated Lyme can cause Dementia, Alzheimer's  ect...My Lyme is untreated. I can not afford the treatments and frankly, the Anemia is enough for me to deal with. I often pretend I don't have Lyme because what is the point of reading about it if I can't do anything about it at this time? It just scares me and makes me stressed. Plus, most of the treatments are not a guarantee so why go through the expense and the trauma if it's not going to pay off? Yet, research and various professionals have told me that Lyme may be what is causing my Anemia as well. If that is the case, I will always be in this struggle. I actually can not talk about Lyme disease or read about it. I declined a fellow Lymie's help and offer to share her journey with me. I just can't deal with it. I am pretending I don't have it...until some days I am in so much pain or have a typical Lyme attack and then I sort of have to face it but it sends me into panic so I fall back on denial. My husband even forgets I have it because it's not a topic that is welcomed in our home right now. Actually, I can't write about it anymore, back to Ferritin...

"Ferritin is an iron storage protein that the body synthesizes, FREE iron can be toxic to our organs. To prevent iron toxicity the body regulates the level of ferritin (synthesis) to accommodate different levels of iron. Ferritin is stored in the bone marrow and organs. Ferritin is used (called on) when the need for iron intake increases to build the Hgb so that you do not become anemic. When the iron stores are depleted, iron is then pulled from the organs, this is a more dangerous stage. When your total body iron is high ferritin is usually high, when total iron body is low, ferritin tends to be low as well. ~Iron deficient people~ tend to have a ferritin less than 10 whatever the bottom of your range is. My Hematologist says under 10, there is no iron remaining. The end stage of the ferritin stores is IDA iron deficiency anemia. So until the iron stored are used up you will not become anemic. Anemia MAY not show until your ferritin is 5 or below around this range anyway. It is different for each person." (taken from HERE

I have wondered lately why I have no energy for people or any desire to join in most activities. I don't care about most issues that I should care about. I don't care about my looks and it takes so much energy just to shower. By the time I get to my make up counter, eyeliner is enough of a feat. My thinning hair is often pulled into a nineties' messy bun and I usually wear what I wore to bed most days or grab something if I have to go out. On days when the sun is shinning I do both better and worse. I feel a little zest of energy but not enough to do much so then I feel contained. I want to go out sometimes. I want to care. I want to look pretty...but I don't want these things enough to actually do them. I am just too exhausted. My writing is less cohesive and creative at times (although that fluctuates too.) Some days, I feel like my brain is dying. Other days I feel like it's my body that will kick the bucket sooner than later. On all days I feel a tad annoyed that I feel that way at all. I know I am lucky. I am also very grateful for what I have and who I am.

It's a strange paradox. Chronic illness has taught me a lot about letting go, BEING and what makes me worthy. I am a stubborn person who fights for the good in everything. However, some days, like today, I just want to complain a bit...or say that frankly, it sucks. There are downsides...ha, even stating that makes me feel a bit guilty. I feel like I should be a better advocate for all those that struggle out there, providing hope and lessons to make it positive. I am that counsellor sort of type and to actually complain about it makes me cringe.

Here is my redemption for today...let me help you... because that is how I feel I can turn my situation and perspective around. Ferritin monitoring is an important indicator of health and one I did not know about until three years ago, even though I have a history of Anemia. When my blood levels go up over what's considered being Anemic but my Ferritin is only up at a six, my organs do not have the storage they need thus I need to stay on supplements. Hair growth and lack of exhaustion will not improve until I reach at least a 70 consecutively for six months (which does not seem hopeful considering that it took me a year to get from a 2 to 6.) During heavy menstruation years, ladies should have their iron and Ferritin checked. If you are struggling with exhaustion, hair loss, chest pain, dizziness, shortness of breath, organ dysfunction, paleness, cold limbs, ect. get checked. I hope I can save others from going undetected like I was for nine years! My ferritin has been less than 8 since my last baby was born but because I didn't have blood work for awhile and my iron hemoglobin didn't start dropping rapidly till a few years later it went untreated. A "normal" red blood cell count isn't enough. Please get regular bloodwork. Men can also be anemic but they tend to actually have iron overload (which is VERY serious) luckily simple blood donation can take care of most of that issue. I am also putting this out there for self understanding and for anyone else who is going through this. Check out my label on Anemia for more. There are better articles in my archives.

Thanks for letting me complain a bit. I hope to pass on some inspiration, quirky creative posts or something worthwhile in the future. For now, I am going to try to BE.

Song Choice: For some reason Amy Whinehouse's voice has really soothed me during this time. I watched her documentary and was both saddened and awed at her talent. She was off my radar because I was birthing kids at the time and out of the zone. This song makes me happy:

Also this song gives me a little burst of energy too. My children just watched the new Peanuts movie. I enjoyed the sweet innocence:

And even though it clearly does not sometimes feel spectacular to be alive ~ it's still good. I like being alive:) This song helps me with my gratitude list...