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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!
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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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.
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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.
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“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
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“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
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She’ll Always be Baby to Him
She’ll Always be Baby to Him
He walks through the door to a woman on the floor. She’s sick now, and he never knows who he’ll be coming home to. The house was built with children in mind. They left a life of adventure behind to save and to plan ahead for a wonderful family instead.
She was still a girl when the illness took hold. But neither of them let go of their goals. And they kept looking on to a brighter tomorrow when all of thier visions would come into view.
More health concerns, the bills piled high, the doctors said she’ll get worse through the rest of her life. And the dreams that once made them laugh were fading into thier past.
Oh, but the one hope that they couldn’t ignore was to start a family so they prayed to the Lord. But her body took a terrible turn- the house went dark- their last dream (like her pain)- it was burned.
They believed that their love would always survive, but the emptiness was an angry kind that filled the corners of their home with doubt. Without the promise of a little one, dreaming just didn’t seem much fun for the couple who had survived everything–until this.
Now a grown woman is like his child and she wonders if taking care of her will drive him wild, but she keeps on praying love will see them through. The loss they mourn is another Chronic Pain that they must both endure, but Hope and Love they cling to just like glue.
-A Body of Hope
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This striking image is courtesy of artist Brett Williams. “Isole” is one of Brett’s chalk works. Please visit one of his pages to purchase an original piece for your home or a gift.
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How Years 16-22 Changed my Life at 28
“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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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!
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WordPress Blog Prompt: Salad Days. Looking Back.
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Green Tree / Fall
Tree Photo by Marie Hunter
~Green Tree / Fall~
Thank you, Green Tree.
For stretching out to meet each day unafraid.
Your leaves reached out to touch the morning rays.
Courageous branches held the birds and squirrels as they played.
You appreciated the spring rain, Green Tree.
Soaking up only what you needed.
Surrounding plants shaded by your un-impeding canopy.
Now, as you break and change, don’t be afraid, Green Tree.
Don’t hold back your leaves from color.
No one will question your strength, Green Tree.
Your beauty will remain.
Your life was not in vein.
As your last brown leaf exhales to the ground,
The forest will remember how you stood so proud.
Don’t fear the change, Green Tree.
–A Body of Hope
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Love Yourself Hard
Get ready to be inspired. (Grab a tissue). Had to re-blog this:
My darling friend (codename Salarcon) is consistently more joyful than many of us put together. She has her struggles, as do all of us, but she has an incredible peace in the midst of those struggles, as do few of us.
She is also a Poetry Slam Goddess and host of a new YouTube poetry program, and her recent poem (below) is about joy — whatever the circumstances.
Life is short, my friends. Whether you are concerned about your orientation or you child’s, or falsely afraid that God does not love you or approve of you, or afraid you somehow do not deserve to be at the table with everyone else, please. You don’t have to do that to yourself.
It’s time to love yourself… hard.
Enjoy Salarcon’s poem… ❤
“I’ve got sunshine on a cloudy day
Whether it’s cold outside I’ve got the month of…”
May 3rd
Amanda dances…
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aBodyofHope 