Saturday, February 18, 2017

Flashbacks, Disability, Ability, Viktor Frankyl and What Makes a Life?

“Love is the only way to grasp another human being in the innermost core of his personality. No one can become fully aware of the very essence of another human being unless he loves him. By his love he is enabled to see the essential traits and features in the beloved person; and even more, he sees that which is potential in him, which is not yet actualized but yet ought to be actualized. Furthermore, by his love, the loving person enables the beloved person to actualize these potentialities. By making him aware of what he can be and of what he should become, he makes these potentialities come true.”- Viktor E Frankyl

My favourite years of my life thus far were when my two eldest children ranged from ages 5-11 and my youngest 3-8. Those years, we grew exponentially in our perspectives and we made parallel cultural choices that were not social norms. We became our choices. We realized that our choices would not work for everyone nor prescribed them to most (only those whom had hearts like ours) but we also realized that they were what we needed to thrive. I found a groove in my homeschooling, and I began to manage my daily pain in a more positive way. I had many questions tempered with enough answers to be fully confident and avidly in love with our life. I wish to get back to that girl I recently lost a bit of. Here is an excerpt, from that time, I found that sums up the daily during these years;


FLASHBACK
"The last half of the year, I had a tough time waking up every morning with pain. I dreaded the routine of another day. But now, despite some pain at times, I have gone to LOVING my mornings.  Which shocks me. Mornings are my time with my children and my time to write or chat with my bestie. Each of my children start my morning jumping on my bed and as the morning progresses they play quietly in their rooms or near me while I work on my writing and catch up on my blog friends. Sometimes they bring a pile of books or toys to sit beside me. These kids love to cuddle, so as soon as they sense I am up, or watch the clock until it's past nine, they hop into my king size bed exclaiming,"Mommy's awake!" Every morning the enthusiasm is the same. Like the queen just knocked on the door. It is simply that I am awake. That's the celebration. It's not because they want me to get them anything (they were taught to make their own breakfast) they just like my presence. Each one fights over who gets to flank my sides for the morning cuddles. They don't care about morning breath or crazy hair, they just care to have a snuggle from mommy. For a quarter of an hour or a full hour they cozy in under the down blankets and chat my waking ears off. EVERY morning. And I feel homesick. Homesick for my future self that will miss these moments with sharp tenderness. I shake the feeling off with determination to enjoy the now and leave the bitter out of the sweet. But I feel a crackle of awareness. Another reminder that this time is poignantly innocent and fleeting with their pure adoration. The last few weeks have been beautiful. I adore waking up to my children chatting and cuddling. I savour schooling them in the afternoons and taking a walk afterword. They say the cutest things that I never remember but I savour their profound truths. This is my favourite stage. I feel like I can actually mother them calmly at this point. While the younger years had their own stunning beauty, I had a really tough time enjoying the days. I barely got through those stages with my sanity in tact. I felt it all fly by. The last few years I have settled in and I love the ages of my children. I also discovered age seven is my favourite year ever (thus far.) When my daughter was seven I felt so close to her and indulged her every whim and memorized every word. 

My son is seven now and I feel the same way. I adore this time. This morning my children were drawing pictures of their lists for Santa. I heard my youngest say, "Santa knows everything, and God knows everything."
My seven year old nudged me, "Mommy, how do you write, "Something magic"?" His list was half written with cute little pictures. I asked, "What do you mean 'something magic'?
He replied, "You know, like a magic ball or something magic like you always get me that's beautiful." He continued on, "Something like my mom and dad...you know? Perfect! You know, like my mom and dad are perfect so a cheerful gift like that....Maybe a glass ornament?"
Happy sigh. A glass ornament that symbolizes his cheerful parents? What could be more touching? I felt like crying and laughing but instead I grabbed him for a quick kiss and mess of the hair.

As I typed this post my youngest (five year old) was cuddled next to me, playing iPhone games. In the middle of his game, he paused, leaned over, and gave me a sloppy kiss on the cheek. Before I could react he was back at his game and I was looking fondly at his profile. He stuns me with his philosophical questions even though he has not figured out how to communicate properly yet. His sensory issues and adorable glasses make him even more endearing. He clutches his hands into little fists if he has to touch something messy or sticky. He can not stand cold. His little body starts shaky and his head sways back and forth as he chatters, "Mommy, I'm freeeeeezzziiiinnnggg." Everyone else is fine. He lives in his PJS and Spiderman costumes. He wears them all over town and I will be sad the day he actually thinks he should not.

And my daughter, oh my daughter, the little nurturer of the family. She hovers making sure everyone is ok. She worries over what they say and where they are. She aids in all the chores with a good attitude and she meticulously cleans her room. She is phenomenal. She is becoming one of my closest friends. The first year Rory to my first year Lorelei."


THE NOW


Fast forward five years later and my son is now twelve. Some days I still see him as a seven year old. I'm already a shadow of the girl my past self was homesick for. My youngest has stopped wearing his Spidey suits around town. As of last Autumn, my kids were all still wearing their Harry Potter robes for walks about and I hope this spring that fact will remain the same.

“Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” - Viktor E Frankyl


A consolation to the time passing is that I have zero regrets to our past choices. I KNOW without a doubt that I savoured every minute I could, even in pain, and that I had my children around me more than most parents get to have, in this current culture, which is important to me and to them. I lived it all and owned almost every second. I know this, but I also am aware that the last two years I have slipped into old habits from years ago. I have been tuning out again. More often than not, I struggle with good choices, energy and discipline. I am aware of what I need to change, how to change, what to ignore, let go of, and how to begin again...I know generally where we need to go in the next year and what wisdom to implement, but I lack the stamina to get there. 

Thus, each day I remind myself to re adjust. I wake up nauseous due to the lovely lump in my neck I have fondly named Rasby. I feel dread immediately but then I remind my groggy eyes to focus on the curtains. More often then not, the sun is gently warming up my patterned curtains and the warm grey/beige of them turns into a rose colour. This image reminds me of my paternal grandma, for some reason, which in turn gives those childhood feelings that most people get when they smell fresh chocolate chip cookies. The nausea becomes easier to deal with. My eyes follow the patterns and the sun until it lands on a beautiful piece of wall decor hanging on the west wall. The sun magnifies. I take a deep breath and tighten my abs like my physiotherapist taught me. I breathe in and out. My children somehow sense I am awake and show up to open my blinds, turn off my fan, and bring me some sort of protein so I can get out of bed. Some view this as spoiled. Our family views it as necessary. If this routine does not happen I am near the toilet for the rest of the morning or bedridden. Without the protein I can't even go pee, no matter how great the need, because I don't have the strength and I feel a myriad of symptoms. But ten minutes after the protein I slowly respond to the world. By mid morning I can pass for a "normal" person, but it starts with the sun, gratitude, breathing, my loved ones, and nurturing food. Which is a good reminder for me about what makes up a quality life. With that beginning I am determined to not waste my precious situation. Even with it's pain and the tragic year we have had, when the toughest part of my year was saving my husband from his suicidal choices and anger, I realize it is STILL a lovely life in general. But that doesn't always mean that it doesn't take work, even if our choices have taken out a lot of the "common" issues most families deal with out of the picture. It helps that we are continually surrounded by love. Genuine love and care with moments of our essence being fully realized.


Physically, physiotherapy has been my starting point. I admit I dread physio every week. Each night I groan as I realize I still need to do my physio, if I haven't already, so I get my butt out of bed and do the stretches and pulls. I am not allowed to do squats yet or even much more than a walk, due to weakness, and sometimes this frustrates me. Sometimes I give up. There are days I think of the very slow progress I have made over the last three months, the weight gained despite my determination, and my lack of strength and I skip my regimnent because 'what's the point?!?!'  But the next day, if I wake up ambitious, I regret that I lost another day to gaining strength, even if it is a very slow and generally un rewarding discipline. So I start again. I try not to beat myself up about my missed days too much. It's what I guess I was capable of handling in that moment. If I can push myself to more, I know I will. With physiotherapy as the foundation, I hope to build into larger amounts of exercise that can effectively keep me at least moving.

I also have learned comparing lives gives me, nor others, anything of value. There were days when I bitterly viewed the people who walked by my house with ease. They were a range of ages and abilities. On most days, I would not be able to keep up with any of them for long. This fact irked me. If I gave into my irritation at the situation, I would overdo my physio by doubling it (which put me out usually for a few days.) So to put this in perspective I have had to tell myself a trigger word to bring me out of that bad place. The trigger word which works is 'Yin/Yang.' It's odd enough that it makes me smile, and it reminds me there is both dark and light in the world. There will always be someone who can do things better than I can, and someone who will be far more impaired. I am gifted in what I am and not in what I am not. I can have a beautiful life filled with love and meaning being both disabled and abled. I am able, with my INFJ harmony personality, to hold contrasting opinions and philosophies thus the 'Yin/Yang,' gives me pause and remembrance. Sometimes I push a little of my limits while other times I accept limits with gratitude. This is also wisdom. It is only once I try or have found out for myself, my limits, that I can let go."I'm through accepting limits cuz someone says there so, some things I can not change, but till I try I'll never know. Too long I've been afraid of losing love I guess I lost, well, if that's love it comes at much to high a cost."- Elphaba/ Wicked.
(My husband snapped this when I was trying to use humour during a massive panic attack at a horrible doctor's appointment I never want to repeat- beauty and pain. Hair loss, weight gain, but a hubby who drives me three hours to failed appointments and lets me rant the entire way home and refuses to let me go back and get treated that way again... If I didn't have the pain, I wouldn't have experienced that reminder of his dedication.)

Over the last month I have realized I need to stop anticipating the day my Ferritin will go up past seventy. Seventy is the marker that hair growth comes back, organ function is optimal, and the energy  manifests. I am currently at a three. With doctor's aid and supplementation I have managed to get past a nine on occasion the last five years but that was as far as I went. With another recent fall back in medical help I have started asking myself these questions; 

"What if THIS is my life? What if I AM full of these symptoms every day? What if this weight stays, the ferritin is always around three, and I am a host to weird symptoms? What if I don't find a doctor which suits me and actually knows fully what Rasby is about? What if I never improve despite all attempts?"

I have set myself up with false expectations in my health. I have expected to improve. I have expected doctors to know what they are doing fully and completely. I have expected to have answers eventually. I have expected to magically wake up with the perfect iron amount. I have expected to be a normal, youth of thirty something, and be like my peers. I have expected that I would one day wake up somewhat able in areas I will never fully be able...no matter the amount of discipline...and this has set me up to spiral downward in the last two years. The only difference between the girl I was a few years back and the girl I am now, is perspective. I still have the same symptoms, the same amount of struggles and the beautiful bounty of life, even if these things manifest slightly differently.

If this is my life from now on shouldn't I accept it? A balance of accepting the things I cannot change, and changing the aspects that I can, seems like the best path to peace. Because what I have now is what I have. Maybe with small tweaks some growth will eventually happen, but today I am ME. Today, this is my table of life. What am I going to do with it? How can I experience beauty WHILE having low energy? How can I savour WHILE I suffer? (With of course making allowances for suffering as well.) How am I going to look at my body being the weight it is at NOW? Can I see the beauty? Will I choose gratitude and meaning? Will I look, with purpose, at the fact that because I am HERE, I AM? Can that be enough?

It's time to re- read 'Man's Search for Meaning' by Victor E Frankyl and implement the principles again. It is time for me to wake up. These have been legitimate struggles, and each of us face pain in our own way. Pain is life. But so is beauty. Checking out of both isn't a long term solution to living. It's time for me to embrace the pain with the ecstasy and the little mundane in between because it's precious. It's mine because I am me.

“Don't aim at success. The more you aim at it and make it a target, the more you are going to miss it. For success, like happiness, cannot be pursued; it must ensue, and it only does so as the unintended side effect of one's personal dedication to a cause greater than oneself or as the by-product of one's surrender to a person other than oneself. Happiness must happen, and the same holds for success: you have to let it happen by not caring about it. I want you to listen to what your conscience commands you to do and go on to carry it out to the best of your knowledge. Then you will live to see that in the long-run—in the long-run, I say!—success will follow you precisely because you had forgotten to think about it” - Viktor Frankyl



Song Choice: Hold on To Me- John Michael Montgomery ( because LOVE makes potentiality come true... "and you don't know if you can hold on to your dreams, baby, you can hold on to me. Wanna lay down each evening, with you right here by my side. Want to get drunk on your laughter, wipe all the tears that you cry. You can scare me with your darkness and blind me with your light. Throw your worries out the window baby on your wildest night. Hold on to me when the world's turning cold, and it feels like your life is spinning out of control, your hoping, praying, trying so hard to believe. Hold on to me when there's no middle ground and every emotion is coming unwound and you don't know if you can hold on to your dreams. Baby, you can hold on to me." There are many manifestations of love...not only parental, sibling, partnership, sexual ..find your love and hold on...even if it is ONE life, experience, or thing to love...Hold on.)

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3 comments:

Alyssa said...

I loved this post, with the memories of your kids when they were younger. It brought back memories of their little chirpy voices and their sprightly faces. I miss them! Looking forward to seeing everyone soon.

S said...

First of all, I am sorry to hear about your present condition.Thyroid and other health issues creates a lot of stress and trauma in life. I was a sick child since a very young age, I remember fainting every other week in our school's morning assembly ( where students assemble for the morning prayers in high school ). It was very embarrassing for me. I was a physically weak and frail child and couldn't tolerate the sun. I used to bleed heavily and could not step out of my home during periods. I had to take medicines for that. I was ( and still I am) very sensitive to a lot of things. I could not do a regular job because of health and other reasons.These are my flashbacks. Things are more or less the same. So I had to create a situation which suits me and fits me rather than accommodating myself to the demands of others. I have developed some coping mechanisms along the way. But it has been a difficult journey. I don't know what to say really but still I would say to you - whatever you are doing is right because you know your situation the best. Being surrounded by your loving family is a beautiful feeling in the midst of pain. I do not crave much ( although sometimes I want to do everything !! ) but only peace of mind under these circumstances. The choices that we make is the best for us. Although sometimes I challenge myself because I want to see what I am capable of and these challenges one day made me write ( my blog, short stories) and do other creative things. When I can't, I rest. Whatever, you have written here resonates with my own feelings on disability. I am also glad to see that your children are growing into beautiful beings in spite all these challenges. We create our own beauty despite resistance and disability, although the outside world may not see it. That is what I think and that give me the courage to move on. Under stress,trauma or chronic illness, it is not possible to be hopeful. I have seen some bad days followed by some better days and like a cycle, life moves on. Most of my hope have been given to me by my husband and we do need someone who believes in us and who is hopeful of a better future with us in these difficult times because when we lose hope and sanity, we need somebody who will hope on behalf of us and tell us not to give up yet. That will keep us from breaking down. I believe that our loved ones ( family,children,friends ) are like our guardian angels in our hardest times.
Sending love and hugs to you,

Kmarie A. said...

ALyssa:
Yup you chose the perfect words to describe them. We miss you too!!! Xoxoxo.

S:Im sorry for those experiences but I also know that people who experience these things tend fo have more compassion, less judgement and a deeper mental/spiritual purpose and meaning in their lives than those that do not...one perk I suppose...and more understanding. I also am like that once a month and I cant go out of my home for three days- the docs want to do a surgery but I know my luck in that department so am holding off... I agree too on the pursuits of creativity when a little sick and resting when it gets bad... It is hard to be hopeful...It helps me to also have my husband too when he is capable of it which this year he was not-so I had to find my own strength but slowly he is adding his support...and I do not begrudge him the time he needed me to rise to him even in illness...that happens in a marriage at times when both spouses are down in varied ways- luckily I am fairly used to masking or dealing so I could rise to him this year in his mental state - but I am running on fumes so it is nice to rely on him occasionally as he is pulling himself out of that darker place:)