Enjoy another sneak peek from Samantha Moss’ memoir titled My Medical Musings: A Story of Love, Laughter, Faith and Hope; Living with a Rare Disease!

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“Loves And Losses”

A friend recently posted a question in a Facebook Group, asking how we can gain freedom in a chronic illness life, so we can choose how we want to live with it?

My response was one word.

Acceptance.

Of course I had to follow through with a short sentence because I really can’t stop at one word!

Acceptance brings me peace and freedom.

After posting my response, I pondered whether acceptance was just a state of resigning myself to living with the shackles of my chronic disease. Or was it more than that?

I feel it’s more. To me the word resignation had a defeatist air about it.

“Resignation: A sad feeling of accepting something that you do not like because you cannot easily change it.”

(Cambridge Dictionary)

I don’t feel defeated. I feel alive. I feel blessed. I feel happy. I definitely feel at peace with my situation. I’m not resigned.

“Acceptance in human psychology is a person’s assent to the reality of a situation, recognizing a process or condition (often a negative or uncomfortable situation) without attempting to change it or protest it.”

(Wikipedia)

This is much closer to how I feel. My situation isn’t ideal. I’m not delusional about my reality. My life now is definitely a semblance of my former life but I’m not fighting against it. I’ve grieved the loss of the things I loved prior to chronic disease. It’s a healthy and necessary process, following grief, to move on to acceptance.

Acceptance is not a sad resignation, it’s the pathway to peace, happiness and freedom from prolonged grief.

For me acceptance is acknowledging my disabling rare disease “is what it is.” It’s part of me but it’s not all of me.

I have formed strategies, over the past seven years, to adjust to my change in circumstances and to live a contented life. I’ve discovered new loves along the way and I’ve shared many of these throughout previous chapters and in my blog.

In this chapter I want to talk about “Loves and Losses” in the context of acceptance.

I have a general positive disposition no matter what life throws at me.

It doesn’t mean I don’t miss things I have always loved but can no longer do.

It doesn’t mean I haven’t made enormous sacrifices to find ways to live with my disease.

It doesn’t mean there are no days when I feel the loss of my loves deeply.

5 G’s Of Change

I have a particular grief/change model I liked to use when I worked as a management consultant. It’s a little less clinical I think than some models.

It’s called the “5 G’s of Change”: 

• Griping – this stage is when you feel like you just can’t do this. It’s all too much. You just want to give up and you are in a state of shock.
• Groaning – this stage is the complaining stage. The shock begins to wane but all you can feel is deep sorrow and even fear as you contemplate your situation.
• Groping – this stage is when you begin to walk forward as if in a forest, moving the trees out of your way so you can begin to see a little clearer. You are wanting to find solutions and are prepared to take baby steps to do so.
• Grasping – You begin to understand what the new situation means. A new norm is emerging. It doesn’t mean you’re ready to embrace it yet. You may find that for a while you still return to the groaning and groping stages.
• Growing – You embrace the new, find ways to live again and acceptance brings peace. You remember the old life and the losses with much less pain now. The memories of the good times may even feel welcome and strangely comforting.

When we lose a loved one we go through every stage of grief. Some stages we may get stuck in for a while. Some stages we may move through quicker than others.

Eventually, most people are able to accept their loved one has passed. They begin to learn to live again.

A part of us will never be the same because of the loss of the one we loved, but as time goes by the memories don’t hurt as much. Those memories may even bring joy and comfort.

We will always miss our loved one.

It’s the same with any major life loss, including the loss of good health. It takes time to work through the stages of grief. We may get stuck in some stages but eventually we’ll grasp our new reality.

We will learn to live again. We’ll never be the same but we will, at some point, accept and embrace a new way of living. We’ll create new norms.

We’ll definitely miss aspects of our old life. Some things we once loved but can no longer do, become lifelong losses. 

My Loves and Losses

• I loved to go on long walks with Peter along the beach, in parks or in the bush. I can’t walk now without crutches or a walker and for distances more than 200 metres I need a wheelchair/scooter. Most days I don’t have the physical strength, due to pain from broken bones, to leave my home.
  • (My New Love…watching travel shows, following YouTube Vloggers who restore French Chateaus, going for parkland picnics with my husband.)
• I loved to go to Church. I now can’t sit for the length of a service due to my broken legs, spinal stenosis and widespread bone pain. My stoma is so unpredictable I need access to disabled toilets, which unfortunately not all churches have.
  • (My New Love…Sunday morning services on YouTube.)

• I loved to go to work. My work wasn’t a job, it was a passion. Leading people was a joy. I was living my dream. I had my dream job. Weekends were nice but Monday to Friday were what I looked forward to. Sad maybe but true.
  • (My New Love…My online support forum, my blog, my writing, my Podcast, my online volunteer work for Arthritis Queensland…I really have a new full-time job!!)
• I loved to jump out of bed every morning bright and early. Mornings were always the best part of my day. I woke with enthusiasm and passion for what the day held. I still do to some degree…until I try to move my body and the realisation sets in that I am not the girl I used to be. Mornings now bring a whole new meaning to “a daily wakeup call.” I am faced with my new reality of chronic illness the moment I open my eyes.
  • (My New Love…Taking my time in the morning and enjoying watching the sunrise while lying on my bed.)
• I loved long road trips. Peter and I have a whole cupboard full of photo albums cataloguing our road trips across Australia. Such beautiful memories are also a stark reminder of what I have lost. Looking at them is definitely bittersweet.
  • (My New Love…Having moved to a semi rural country area, I now enjoy Peter taking me for gorgeous country drives right on our doorstep.)

• Being Independent. I’ve never been one to crave independence, even when I was healthy, but once you no longer have the ability to jump in a car and drive to the local shops or go to a hairdresser appointment, etc. on your own, independence is suddenly a loss. I am 100% reliant on Peter, or a carer, to be with me outside of the home and to help me with most things in the home.
  • (My New Loves…Online shopping, mobile hairdresser, at home care, medical phone consultations.)
• I loved to go to restaurants. Those days are gone. I can manage 20 minutes in a local cafe on a rare good day but any longer and my pain levels are unbearable.
  • (My New Love…Morning Tea or Lunch on our back patio using our pretty china and enjoying yummy food, whenever we like and with our choice of music in the background.)
• I loved being spontaneous. Peter and I always enjoyed just deciding on a whim to head out on an adventure or go on holiday on short notice. We had freedom to accept job opportunities all over the country. We have moved locations and homes over 17 times in our 25 years of marriage. Those days are well and truly gone. The most spontaneous thing I do now is buy something online as a treat, which leads me to…
  • (My New Love…Slowing down and feeling settled.)
• I loved going shopping. My favourite pastime, when I wasn’t at work, was strolling through our local Westfield Shopping Centre with Peter. We would window shop for hours hand in hand. We’d stop for a coffee and a snack and head off again, enjoying every minute.
  • (My New Love…Online shopping and comfortable feet!!)

My losses are Peter’s losses too. He misses all the things we did together. He’s also had to travel his own journey towards acceptance.

We must never forget how our chronic illness affects those who love us.

They will have their own unique reactions, as they work through the 5 G’s of Change, and we need to give them time to come to terms with this new life.

Discovering New Loves

So a life of acceptance will be a life encompassing loves and losses. New loves will be discovered. My old loves are still very much a part of me. They are part of my DNA so to forget them, or be fearful of remembering them, won’t help me accept I am now living and writing a new chapter of my life.

I accept my losses and acknowledge I miss them. It’s okay to miss things we loved.

“Blessed are those who mourn, for they will be comforted.”

(New International Version, Matt. 5:4)

My response to accepting the chronic illness changes in my life, is to constantly find ways to fill the void of my losses with new loves.

If you are having a day, or season, when you are deeply feeling the loss of the things you loved to do, take time out to think about how you can create a new love. Something to help fill the void.

You might just be surprised at how creative you can be once you start brainstorming ideas. Enlisting the help of close friends or online support group friends, may get you started with a “new loves” list.

Whatever grief stage you are at, in your life changing event, don’t be afraid to contemplate your loves and losses. Feel the pain, hope for the future.

It’s a healthy response to change.

It’s all part of journeying towards the acceptance process! It’s all part of creating a very different, new life full of new loves.

“And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away.”  

(King James Bible, Rev. 21:4)

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We hope you enjoyed todays blog written by Samantha Moss! If you liked what you read so far, you can purchase her book here!