Grieving with a Chronic Illness

This 20-year-old blogger and survivor of multiple chronic illnesses describes her grief process. You may be surprised to see that even on a somber topic like mourning loss of health, she writes from an outlook of gratitude; below she shares why she chooses her approach.
If you like this post, check out the article she wrote last week- it will give you a boost of inspiration!

Life with an illness

With a chronic illness, there is no cure. It is all about treating the symptoms and learning to live life with it. It’s like an enemy you can’t get rid of. Its hard to cope with at times. For me, I was working, in college, and training for a half marathon, and one day it hit me like a truck. Within 2 days I was in the hospital. So going from constantly on the go and enjoying a normal 20 year old life to daily appointments, constantly miserable, and not being able to take care of myself alone. Its normal to have grieving stages while being sick, here are ways I grieve with having several chronic illnesses.

• The anger phase.

Its okay to be angry, I completely understand this phase. I’ve lost a lot like my job, a lot of people in my life disappeared, and I can’t do a…

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“Life will break you” quote Louise Erdrich

The Interrupted Kiss by Amandine Van Ray

“Life will break you.

Nobody can protect you from that,

and living alone won’t either,

for solitude will also break you with its yearning.

You have to love.

You have to feel.

It is the reason you are here on earth.

You are here to risk your heart.

You are here to be swallowed up.

And when it happens that you are broken,

or betrayed, or left, or hurt,

or death brushes near,

let yourself sit by an apple tree

and listen to the apples falling all around you in heaps,

wasting their sweetness.

Tell yourself you tasted as many as you could.”

― Louise Erdrich

A Peace Premonition

Just over one year ago, I wrote a post which I now believe may have been a premonition. On one of the last days of 2015 I wrote No Fear Campaign, 2015 and I have thought back to that post as well as revisited it so many times throughout this past year.

I was fueled with courage at the beginning of the year, but I had no idea why I would need it. And then the bottom dropped out of my life and I REQUIRED that courage more than ever. I suffered so much loss this year, I made a huge transition, fought a difficult battle, saw several new doctors, visited the hospital, started physical therapy, home care, and have been exposing myself to many new faces, new experiences, and could never have imagined any of this just one year ago. It’s true that this year, I’ve been in constant crisis management. But it’s also true that I’ve been managing my own crisis. That might seem like a given, but illness doesn’t always allow us that luxury.

Last year, the messages to be courageous seemed to jump out everywhere: Have no fear, do not fear, I am with you, be not afraid. If God wants you to hear a message, you will see it constantly whether it is on Facebook or Twitter or television or out of your home or in your Bible- if you feel like there is something that keeps popping up in front of you repeatedly, that message is JUST FOR YOU! Truth finds you. You can try to ignore it, but if God wants a message in front of you, He will repeat it and confirm it. It’s not a coincidence. And I am so thankful I grasped the message to have courage when I did. It truly saved my life this year and courage continues to change how I move forward.

Things are so hard now, SO HARD. But I’m planning to beat fear once again, and go to my sister’s wedding… in 7 days. This is possibly one of the scariest things I have ever attempted. And yes, I am afraid. As it comes closer, all of those I CAN’T thoughts are terrifying at times.

Courage in the Fire

These posters were made around the end of last year. Around the same time that I wrote No Fear Campaign, I wrote a few other, fearless-themed posts. In one piece, I said: “The strength comes for the step you need it, not days or months ahead.” That is what I am counting on for this wedding adventure. And it helps give me peace that God will strengthen me and my body to do what needs to be done when the time comes, for my sister, and for me.

Whatever trials wait for you tomorrow, and paralyze your heart with worry today, I hope you feel comforted remembering you can call on that added strength and courage at the moment you need it. You aren’t walking your path alone.

~Peace be with you~

“Freedom lies in being bold.”
― Robert Frost

More like a death than a divorce

Secretly, some days I think if he had died instead, this would all be less complicated. I know you’re cringing. I am going to lose some of you right away for saying that. It’s totally perverse, and I feel so much shame for thinking it, but I have thought it.

It’s like when I hear people with a rare disease say they wish they had cancer instead. CANCER? What?! No one wants cancer. That’s a horrible thing to say, but when doctors, family and society can’t comprehend how severely you are suffering, it is not rare at all for people to say, “At least if I said I had cancer, people would take my suffering seriously.”

When a loved one passes, that memory is in tact. In time, the very best memories rise to the surface. Their imperfections drift away. You cling most to the joy and love you shared, and their best attributes shine. That’s what I want for him. I want his legacy to be in tact, and to be part of my heart… for him not to have broken it.

In a divorce, even if you shared a long, loving and sweet relationship, the breakup and divorce process turns it all sour. I wish there were a way to put 16 years in a time capsule, and then just sweep away the last 9 months.

I want so badly to remember him as he used to be. It’s impossible to look back at the relationship with the love and sweetness it deserves without the ending shading every single moment beforehand. That’s how bitterness blooms.

I don’t want the best years of my life to be erased by a few months of the worst. Many have advised to just let go of it, but you can’t just punch out half of your life. I can’t move from this so quickly. Especially not when it ended so abruptly. It deserves to be felt. I loved him that much that I’m willing to feel it all.

I want to grieve the man I love like the widow grieves her departed. I want to cherish the love we shared like the treasure I believed it to be. I want to bury our marriage so it rests in peace. 

My other secret is that I pray for him. That he is well, and God is taking care of him.

Grateful in ALL things??

It’s easy to be thankful for your home and your family. Most people are thankful for their health and their careers or education. We should always treasure the people who are good to us, the comforts of home and our abilities, as life is so fragile. Those familiar with serious illness or tragedy understand that better than anyone.
But what if you lost everything?
What if tomorrow it was all gone?
What if you were left with only your physical pain and all of your loss?
How then would you have gratitude?

When I set out to write about gratitude this year, it was only through the eyes of my faith that I could write it.

The Bible asks me not only to be thankful for my blessings, but to be thankful INSIDE of my struggles, in my weakness, in my illness, in my loss, to be thankful in my…mess.
Sometimes all our eyes can see are the broken pieces. Sometimes all our bodies can feel is the pain. At times struggle and burden is all that our hearts will allow us to hold.

Let’s be serious, I’m not thankful for my illness or my loss! But the thought of being thankful INSIDE of it is a concept I can lean into. Maybe I can embrace these challenges because I am being changed, transformed. Maybe I can be thankful through it because I know there will be good to come of it.
What if tomorrow the broken pieces of your life as they are now can be used for something better than the pain you feel today?

What has come out of a dark time in your life that you can now be thankful for?

Have a blessed Thanksgiving.

Thank you to the wonderful writer,  lifeinslowmotionblog.com and admin of Changing the World when you are Chronically Ill, Disabled, or Homebound for encouraging me to dig deep and write this.

“A Lonely Life” by Mary Jane Gonzales

I’m honored to share this from poet, writer, author Mary Jane Gonzales’s new blog: MyInvisibleLife.net

Once upon a time, in my real life, I had lots and lots of friends. Despite being handicapped, life was full. Even when handicaps grew to the point of disabilities and everything was more of a challenge, there was still an abundance of events to attend and activities to do.

But over the years, an alternate life set in. And, strange as it seems, there were levels leading up to that point. Starting off normal, becoming handicapped, becoming disabled, becoming homebound, then becoming bedbound. Though I’m very grateful this alternate life occurred over time, rather than all at once, the fact remains it takes a lot of adjusting. And, in that journey, you’re very much alone. No-one is walking in your shoes – and, even those walking alongside you, who likewise grieve your loss, cannot relate to what you experience. And, sadly, the not understanding often leads to abandonment. Not that it’s intentional, but we live in a microwave society that expects quick results. They can’t comprehend (or tolerate) unresolved issues. Chronic pain or lingering illness is unfathomable to most; and would be to us if we weren’t living it. And loss of health is not the only reason for them (or us) to retreat.

Other reasons could be depression that accompanies chronic illness, maybe making us less positive, not seeing the glass half full as much as we had before. Or us not calling them as much as before because there’s nothing new or good to report. Unfortunately, that can be translated to them as a loss of interest. And them not calling us anymore feels like rejection or abandonment. So, for me and countless others, the new reality is lacking someone to visit us or someone to call for a favor. Instead, there’s a host of virtual friends who truly understand what you’re going through and may become treasured friends. Yet, the loss of longtime friendships is painful and the loss of visitors is lonely. I know that everyone’s at a different place in life, and some may not be here yet, just as I was not here yet.

But, though it’s taken much time for me to get to this point, I have arrived! Thankfully, I’m very blessed in so many ways. I have my family, my faith and a couple of friends who, though not nearby, love and support me. I keep myself busy with various projects and enjoy life as much as possible considering the circumstance. I can’t deny that an invisible life is a lonely life. Lonely being a relative term, you could be at the beginning stage where you can no longer work and are no longer in the mainstream of life. Or, you could be acclimated to being at home and still be receiving visitors.

Whatever point each of us is at, we need to be able to entertain or occupy ourselves, rather than expecting others to meet that need. So much is learned from chronic illness, with self-discovery being one of them. Though I would not have chosen this life of illness, neither could I have known that good could come from it. Despite the hardship or trauma of disease, in the end, I suspect that most of us have been made better by what we’ve been through.

Find her books here available on BarnesandNoble

“Sorrow prepares you for Joy,” Rumi quote

“Sorrow prepares you for joy. It violently sweeps everything out of your house, so that new joy can find space to enter. It shakes the yellow leaves from the bough of your heart, so that fresh, green leaves can grow in their place. It pulls up the rotten roots, so that new roots hidden beneath have room to grow. Whatever sorrow shakes from your heart, far better things will take their place.”

― Rumi

“How can a body withstand this?” quote by Ellen Bass

“To love life, to love it even

when you have no stomach for it

and everything you’ve held dear

crumbles like burnt paper in your hands,

your throat filled with the silt of it.

When grief sits with you, its tropical heat

thickening the air, heavy as water

more fit for gills than lungs;

when grief weights you like your own flesh

only more of it, an obesity of grief,

you think, How can a body withstand this?

Then you hold life like a face

between your palms, a plain face,

no charming smile, no violet eyes,

and you say, yes, I will take you

I will love you, again.”

― Ellen Bass

Grief, Relief and May Showers

It washes over you like the song that makes your heart pound. Like the goose bumps your body forgets to have any more. It’s like a constant shiver, and then sometimes, all at once- like being startled. Then, it shatters so loudly into a million pieces all over you and you think your insides might have been shredded along with it.

If you have grieved a sudden loss, you know this feeling.

If you have lived through multiple crises, traumas, or losses, you know this feeling all too well. And if this is a very familiar feeling to you, I am sorry for all of the pain and shock you have endured throughout your life.

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Good news: my body has had its first good days in 4 years! The past year, I could feel improvement, however every inch of progress has come with a setback in another area of my health. So, it has been a slow year of trade offs and feeling as though my head, body and brain have been fighting against one another. Since I couldn’t make physical progress, I took advantage of the slow return to clarity of my mind. I have been focusing on improving my brain functioning, my speech, fine motor skills, trying to regain memory, and making strong connections with others again online. In four years time, that seems like minor recovery, but when you can’t wait around for your body, you do whatever you can with the tools you do have. I know everyone reading with a disability, in recovery after stroke or an accident, or with a chronic illness understands that sentiment.

I’m not new to chronic illness as I’ve had severe chronic pain for 10 years, however dealing with multiple chronic illnesses in such a debilitating way started in 2011. Actually, last week was the 4 year anniversary of the procedures that caused all of the major issues that have so changed my body, mind, and the lives of my husband and our families. No matter what, I feel as though a part of me will always be left back in May, 2011. And a huge piece of my subconscious is still 22 when the problems first began. I think losing health stops time in a way- or changes the way time moves and how we move through it.

I thought I was done grieving for my loss of health, but after becoming bed bound at 28, the grief process started all over again. Every time something else is lost to my body, I have to mourn first before I can accept it. Several years into my journey with chronic pain, I decided to celebrate the “Spooniversary” that began in 2004. It was no longer a melancholy day of loss; instead I decided to celebrate the endurance, support, and faith it took to traverse it. Ten years was a milestone. But all of my newer illness acquisitions are a different ballgame. Maybe next May I will be ready to also celebrate how much this body and mind have endured since 2011. For now, I think I’m just now beginning to come to terms with much of what has taken place over the past 4 years.

Last week was also the anniversary of the passing of my best friend. Every year at this time, I reflect on all of the ways she changed my life, all of the soulful years we spent learning and growing together. The way we became each other’s family at a time when we both were desperate for a safe space to call home. We became each other’s peaceful place in the world. The time has finally come, so many years later that I can look back on her life and our years spent together and feel more joy than sorrow. Her life continues to affect mine. Her spirit echoes into me every day. I think of her words, her soul, her love, and I cannot help but feel love still flowing like a river from her memory. Because of her, I know that a person can have more than one soul mate- and those rare relationships can save you from life’s ugliness in the most beautiful way. These unique connections can ground us to the world so we don’t float away when the earth seems to have lost its gravity. I remember her every day as she is part of me, and always will be. But as you know, there are those days, those celebrations, those dates marked on your personal calendar which tug at your heart just a bit more. The week of Mother’s Day is always that for me.

And the same week, without warning, like a loud crashing vessel falling from the sky and onto our roof. Gravity was lost on the earth again. Another confusing life circumstance. So many unanswered questions. Shattered pieces all around- you don’t know where to begin the pickup. For now, I don’t even have the words to express what I am feeling or what just happened in our family. This new current issue is certainly unexpected. I think May is definitely NOT my month!

I will look forward to a time when my needs aren’t in the hands of others, and I can be the one helping once again. I am always very thankful to have those in my life willing to do the things I no longer can for myself. Having better health days lately makes me feel like that time might be closer within my reach.

When I look back on this past year, and how my body has been swapping one good thing for another big setback, the past couple weeks feel very similar to that. My body is giving me a green light to move forward in recovery, while life is ripping the rug out in another way. If I were not grieving, I would be so excited about progress. It does help soften the blow, so I’m very grateful to have the added strength at this time especially. That is life, isn’t it? The universe is always balancing itself.

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Since May is Mental Health Awareness Month, bloggers and those on social networking have been doing awesome work sharing and advocating about equal care, I wanted to add something as well. People who are bed bound or home bound do not have the same access to mental health care. Whether you have expensive private insurance or Medicare/Medicaid, it is nearly impossible in most areas to find a “Home Mental Health Professional”. Most psychologists and counselors are not covered or willing to do home visits, nor are they trained in distance therapy (online counseling). There is an abundance of web therapy now, however much of it is not covered under insurance and does not always adhere to guidelines for keeping records and evaluating. For those who are incapacitated from chronic, progressive or mental illness, there are a myriad of psychological implications and we do not have the same treatment options as those who can drive to an office, sit in a waiting room, and then sit and talk aloud with a counselor in person. We know we are losing desperate brothers and sisters who have severe chronic pain, chronic illness and mental illness conditions. In the near future, home therapy options NEED to become more easily available and covered by providers.

Take the Stigma Free Pledge for Mental Health Awareness Month 2015

How Years 16-22 Changed my Life at 28

Oblivion by ©Mitzi Sato-Wiuff

“What’s with all of the appreciation? Isn’t pain and illness miserable…aren’t you suffering every day and lonely in bed? Don’t you hate that the world is spinning without you?” Don’t get me wrong, I’ve had plenty of pity party time over the years. Plenty of my own misery that I’ve crawled into. I still do from time to time. But, I have more gratitude now that is helping me along more these days. Why? How?

I was living my life, being an over-achiever, free-spirit, planner, optimist, perfectionist, social butterfly, spontaneous young person (yes all of those things at once). And boom: gimpy girl, doctors are your new BFF’s, your plans are a joke, and spontaneity is only reserved for your malfunctioning body. Adult life had just begun. The pieces had just fallen into place when they shattered apart so suddenly. I had so much fear about the future. Between all of the doctors ensuring me what a dim future I would have added to the horror stories I would read online, plus my own excruciating pain- equaled a young person very ill equipped to emotionally handle the fallout.

In the beginning, when I happened upon my first story of a child going through the same thing I was, I couldn’t help but draw strength from it. Knowing a child was in so much terrible pain every day, and still going to school and trying to walk or play- had me reconsider my own desperation. In all the times I was so ready to give up, there were definitely moments I would look up stories of children with the same pain disorder and remind myself that they don’t even realize they can check out. They just have to be strong- so they are. Because I’m in the same fight, I should also be strong beside them. Maybe you think it’s perverse, but it helped me. It helps me.

[One note: Others’ suffering does not negate one’s own trials and battles in life. Hopefully though, it can help us gain better perspective. We still must face our own pain intimately. A million other people in pain does not lessen my own struggle or yours. I just want to clarify that is not what I’m saying.]

It wasn’t until more recently, a few years ago when a myriad of other conditions floated my way, including a nasty one called POTS that changed my thoughts even more-so…

Even though I personally became chronically ill at 22 and then bedbound at 28, it is very common for young women of 16 to get POTS, unfortunately. There are teen girls at home and in hospitals all over the world hardly able to stand or sit up wondering what kind of future they will have. These young women are my heroes. Not only have they been teaching me how to better manage my condition using food, technology, and lifestyle choices, they also teach me through their attitudes. They keep pushing, keep trying, and they never give up hope.

When my POTS began something clicked for me. Even though my POTS entered my life with so many other conditions and more pain, making me more debilitated than ever, I’ve felt less grief for all I’m missing out on in life. It opened my eyes to how much I had done from 16 to 22 when my first chronic illness set in. In those 6 years, I finished high school, worked several jobs, had been in love, traveled the entire country, I learned how to do so many things with my hands, I used my body to go on many exciting adventures, and made amazing memories with my friends. I found the love of my life, lived independently, got married, bought a house, started college, and got the opportunity to spend quality time with my family.

For a very long time, I looked back at my life and memories and thought it wasn’t enough. I couldn’t even look at a old pictures without the memories crushing my heart- so I didn’t. It was like losing a loved one; losing myself. But if I can appreciate from 16 to 22, then I can appreciate all of it. What about the children whose illness inhibits their freedoms in life from a very young age? It changes the way I look back. Now I can look back at my memories and pictures and say, “Wow, I’m so blessed! God really allowed me to do so much!” Instead of, “I wish life could be as good as it used to be.”

Being thankful changes everything. Focusing on gratitude takes work though. And I have to avoid that which spirals me into my darkness. If you are toward the beginning of your journey, I don’t believe that mourning the loss of your life is negative. It’s an appropriate response and grieving is a valuable part of the illness journey. It has just taken me a long time to get here, and I have required a great deal of grace to find my way. Blessings to you on your own path.

 

“And I said, This is my infirmity: but I will remember the years of the right hand of the most High. I will remember the works of the Lord: surely I will remember thy wonders of old. I will meditate also of all thy work, and talk of thy doings.” -Psalm 77:10-12

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©Mitzi Sato-Wiuff

Thank you to Mitzi Sato-Wiuff at Aurora Wings on Etsy for allowing her very special original Skull Image to be featured here. Please go check out her shops linked below and purchase one of her awesome prints or instant downloads as a gift for the holidays!

www.aurorawings.com

www.etsy.com/shop/AuroraWings

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WordPress Blog Prompt: Salad Days. Looking Back.

Salad Days