I’m not afraid of storms, for I’m learning how to sail my ship.Louisa May Alcott (Author of “Little Women”)
I always think we have a choice when faced with “storms of life”.
We can bunker down and wait for the storm to pass, or we can continue to live, albeit with impediments, and find a way to sail through.
Sometimes it’s appropriate to bunker down as the storm will pass. However when it comes to chronic illness, we often live in a constant storm. To bunker down may result in us never moving forward. We could further cripple ourselves, when our disease is already doing a good job of sinking us without our help.
I love the quote from Louisa May Alcott. She’s basically saying storms give us the opportunity to polish our sailing skills and see what we are capable of. They provide life lessons, and as we sail through them, we can feel a sense of elation at what we’ve been able to achieve.
A friend of mine, alongside her husband, has just published a book called Sunbreaks In Unending Storms :Understanding Invisible Disabilities, How to Thrive There, and How to Help.
I was honoured to be asked to endorse the book and Carole has also quoted my writing and experiences in a couple of chapters.
What I love is her insight into the theme of Storms, her practical tips on living through them from a caregiver perspective, and as a person living with chronic illness. It is well worth a read.
Sailing Through My Storms
At the moment I feel I have 3 storms battering my sails. I’m determined to sail through them, learn from them, and hopefully gain new experiences which may help others in the long-term.
My first storm is the progression of my bone disease.
It’s unrelenting. No matter how much I think I have a handle on it, I’m often taken by surprise at the intensity of pain and the speed of damage it inflicts on my body. I want to ignore it, but every now and again I’m forced to lift my anchor of denial and sail forward with an action plan.
This usually involves contacting my Specialists, having numerous blood tests, scans, appointments, change in medications etc.
Do I want to do any of the above? No. I’m sick of scans and Specialist appointments. I’m sick of needing to focus on my disease.
I’m also well aware to deny the progression of my disease is ridiculous. I could be putting myself in danger and more importantly, causing my husband to endure greater anxiety and emotional pain, as he witnesses the progression of my disease first-hand.
To take action has a certain sense of liberation. A sense of control again.
This renewed sense of control gives me the nudge and strength I need to set sail again.
So, as physically painful as it always is to get through my action plan, I know it’s the right thing to do. I will adjust my sails and, “learn how to sail my ship”, through each new stormy path of my bone disease.
My second storm is my hairloss.
Last year I wrote a blog post about my excitement of “My Wig Is On It’s Way!!
I was convinced this was the answer to my severely balding locks. I was sailing into the storm with a solution!
Well, best laid plans etc. The wig was beautiful but it just changed my look so much I didn’t recognise myself in the mirror.
It also wouldn’t stay on my head without an enormous amount of fiddling. I would require wig glue, wig cap etc. If able-bodied all this is reasonable to do, but when you are struggling to change your stoma appliance and get dressed each day, due to severe spinal damage and widespread bone pain and fractures, worrying about a wig is not a storm I’m able or willing to sail through.
An adjustment of sails was required and I decided to sail towards my beautiful hairdresser. She’s an amazing young woman, who thinks nothing of travelling a 90 minute round trip to visit me at home. I can’t thank her enough.
We looked at the strands dangling from my head and decided a short pixi style haircut, still able to frame my face, was worth a try.
I breathed deeply and embraced the storm, setting my sails full steam ahead.
I couldn’t have been more happy with the results. I put a colour through it and managed to create an acceptable hairstyle I felt confident to go out with.
I’m growing it longer again as I’ve found hair fibres are really helping to disguise the thinning on top and my hair is quite thick through it’s length. I know I’ll continue to need to alter my sails when it comes to my hair needs. I literally need to go with the flow when it comes to this particular storm.
My third storm is the recent passing of my Dad and my grief journey.
Grief doesn’t like to conform to a time frame. It takes a loose form of structured stages, often defined by experts as the 5 or 7 stages of grief, often they are interchangeable.
I wrote a blog post some months after Dad’s passing called Good Grief.
It’s still very early days in this storm of life for me.
A Year Has Passed
My beautiful Dad passed away a year ago on April 5th. He was laid to rest on Thursday 15th April 2021.
Interestingly the 15th April this year falls on Good Friday. It seems so fitting somehow the way this date has fallen. Dad’s faith was strong and I have no doubt he is enjoying his resurrected life in heaven with no more pain or suffering.
Miss you so much Dad. I still have moments when I forget you’re not at home as usual. Then it hits!!
Thoughts of you catch me by surprise. They cause me to laugh as I remember our fun times together, some trigger such heart breaking loss as I realise I can’t ring you to share good news or chat about anything or everything.
I’m just so glad your pain is over, so glad you are at peace.
I know you’ll be singing loudly in heavens choir…..possibly even conducting it by now or at the very least playing the organ
I love you Dad.
In my “Good Grief” blog post I shared my own model of grief….The 5 G’s of Grief. I’ve used this model over the years when I worked as a Change Management Consultant. It’s simple and effective, and a good rudder to assist navigating the course, when sailing through any storm.
As I worked through my personal loss of my Dad throughout this past year, I wanted to add a 6th stage…Good Grief.
As much as I loved my Dad and always will, I need to move forward without him, as hard as it is. I need to be grateful for the relationship we enjoyed throughout the years. I have memories to hold onto always. My own precious memories of my beautiful Dad belong to me, are a part of me. They fill my “Good Grief” phase.
The 6 G’s of Grief
Introducing the 6 G’s of Change:
Griping – this stage is when you feel like you just can’t face it. It’s all too much. It’s chaotic, it’s stressful. It’s all about you.
Groaning– this stage is the complaining stage. You want to let everyone know how difficult life is in your world.
Groping – during this stage you begin to walk forward as if in a forest, moving the trees out of your way so you begin to see a little clearer
Grasping – You begin to understand what the new situation means
Growing – You begin to embrace the new, and look for ways to live again.
Good Grief – This final stage offers hope of better days. Functional days arrive with renewed purpose. Acceptance brings peace.
“Good Grief” is not easy to achieve. I’ll be adjusting my sails often to navigate this particular storm.
Grief is a lonely journey. Friends, family, colleagues stop asking if you are ok when a few months, sometimes weeks have passed by after losing a loved one.
I think it’s partly because losing someone close is too triggering for others. They worry about losing their own loved ones and would prefer not to think about it. Or your loss triggers their own past losses and they begin to grieve again.
It’s tricky isn’t it. I’ve also found others haven’t asked because they were worried it would upset me.
It’s Ok To Ask…”Are You Ok?”
I think at the end of the day, no matter the situation, it’s always good to check in on others sailing through storms. It’s always appropriate to ask “are you ok?”.
It’s then up to the person sailing through the storm, to elaborate on their situation or simply say, “thank you, I’m ok“.
Some days I’m ok with sailing through on my own in the storms of life.
Some days I need time out to dock in a port and seek out a sunny, calm place for a while.
Sometimes I need to talk about the stormy passage, and sometimes I just need to be quiet to embrace the feelings of loneliness and isolation.
Life is a journey, even if it’s an over used phrase, it’s true. It will always have highs and lows. We’ll make good decisions and bad decisions. We’ll have sunny days and stormy days.
One thing I know, I agree with Louise May Alcott’s quote;
“I’m not afraid of storms, for I’m learning how to sail my ship”
Take care as you sail through the storms of life. I hope you can gain some comfort from knowing others sail alongside you.
I hope there are people in your life who will ask, “Are you ok?”
I hope you will be reminded to ask others if they are ok.
Together we are stronger. Sometimes it only takes a small, caring interaction with another person, even a stranger, to help calm the stormy waters, and allow a time of smooth sailing to evolve.
If you’re looking for genuine support, care, understanding and friendship, you are so welcome to join my closed Facebook support forum, Medical Musings with Friends . It’s a safe place to connect with others living with chronic and complex diseases, who truly understand the daily challenges. A warm welcome awaits.
If you would like an audible version of my blog, please check out my Podcast, Medical Musings With Sam