By Francesca Lee
As I began to compose this third installment of my story, I prayed “God please help me to tell the story YOU’VE written for me to share through these words”. I remember back to a sermon I watched a few weeks ago by Annie F Downs, when she said “No one in the Bible except Jesus knew how their story was going to end either!” It reinforced to me that we are not the author of our story, we are just the participant in the story that God has written FOR us! We just have to live it out.
Over the many years of chronic illness, my body has endured a plethora of symptoms daily, going to an assortment of hospitals, seeking different treatments, and has been on the receiving end of a range of diagnoses. All the while searching for healing and a cure to the diseases and imbalances in my body, each year merging into the next.
As I became unwell at 13, I was only part way through my academic studies. I always loved school, interacting with friends and learning new and interesting subjects. However as my health deteriorated, I was finding it increasingly harder to learn and obtain new information. My brain just wasn’t working in the same way as it used to. I can only describe it as a before and after version of myself from the events of 2007. I’ve never been the same person again.
To begin with, I found it incredibly frustrating, I was determined to not let my debilitating health beat me.
I had a choice to leave school entirely, take a year out or to be homeschooled, all of which to try to give my body a fighting chance for recovery. My immediate reaction was that I didn’t want to fall behind, leave the friends that I loved and school that I loved. My school that I was attending was a Church of England school and I felt so at home there. When I was able to make it into school, the extremely limited hours a week that I did, my home base would be the learning support centre. I had mentors that would go to my classes for me, take notes so that I could learn at home on my own or have family to help me. I was determined not to give up. I could only really study for an hour a day if that and would spend most of my days at home or in the support centre asleep. Throughout that time it taught me how to independently study and lean on your own intuition of how best to learn for you.
When our final exams came at the age of 15/16 I pushed through to take them, I was wheeled round in my wheelchair to the support centre, propped up by pillows and it was a real fight to finish. As soon as they were over my body couldn’t take it any longer, it collapsed completely and started shutting down on me. That summer I was completely bed bound again for a few months solid. Sleeping day and night, in complete darkness. I couldn’t tolerate any light, noise or smells. When we began to increase the light exposure, I had to wear sunglasses all of the time. My Grandma had to bed bath me, I couldn’t even lift my arm off of the bed. In the forthcoming months and years, I had to learn how to do everything again from scratch. Such as learning how to roll over in bed, sit up by myself, feed myself, speak, read and one of the hardest things, learning to stand and walk again. As I was rehabilitating, I was especially blessed to always have my Mum by my side, and to this day she is my absolute rock. I wouldn't be here without her. Back then, she made a drawing of a ladder for me that we taped to my wardrobe. Every small incremental progress I made we’d move a paper flower on a paper clip up a rung of the ladder. As small as this sounds, it was the motivation that I needed to keep going. Each week we’d have a check list of exercises for me to do such as turn my head slightly to the left to build my neck muscles or make my hand into a fist to increase my strength, so on and so forth; but each week there was always a section for something that I was grateful for! Most weeks it was being able to watch an episode of One Tree Hill in little chunks, in order to increase my awareness, concentration and ability to stay awake. That tv program has such a special place in my heart!
As I was progressing with my at home physio, I was learning and gradually gaining strength. It was small and gradual but it really has established in me the meaning of this scripture!
“Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.”
Romans 5:1-17 NIV
I’ve definitely learnt the meaning of perseverance, determination and of pure hope.
Back then, I was also in the depths of depression and other mental health challenges, most days I couldn’t see any way out and it was a real battle to continue. However as the years have gone on, my hope has been ignited, it started with a small glimmer, even just the tiniest thread. It has been an incredibly tough journey and an extremely long road but with hope and faith, my life began to be illuminated again. Just as the sun rises at dawn, the light gradually seeped into my life, little by little.
It has reminded me that we not only die with Jesus in his sufferings but just as he was resurrected, God was resurrecting my body and life.
“I am crucified with Christ: nevertheless I live; yet not I, but Christ liveth in me: and the life which I now live in the flesh I live by the faith of the Son of God, who loved me, and gave himself for me.” Galatians 2:20 KJV
“For if we have become united with Him in the likeness of His death, certainly we shall also be in the likeness of His resurrection, knowing this, that our old self was crucified with Him, in order that our body of sin might be done away with, so that we would no longer be slaves to sin; for he who has died is freed from sin.
Now if we have died with Christ, we believe that we shall also live with Him.”
Romans 6:5-8 NASB
When it came to my walking progress journey, when I was able to proceed to going outside, we used to have a brick path in our garden that consisted of yellow and pink patio slabs going in a line from the top of our garden down the middle to the end. I used to think of it as my ‘yellow brick road’, every other week advancing just one paving slab. I remember when it got to the halfway point, I collapsed and my Mum and Grandma who were holding me on each side just picked me up and held me. Truly my angels on my right side and my left side.
I eventually got the ability to walk with two sticks or one stick and someone holding onto me, integrated with using my wheelchair. It has definitely been a process to say the least and one with many ebbs and flows!
I truly appreciate that when you have everything taken away in your physical ability. Anything you’re able to do is such a huge achievement and something to be praised and celebrated! This path in life has really taught me deep empathy, compassion, gratitude and appreciation for the smallest of things. The little, mundane or insignificant tasks of everyday life become so much more significant and meaningful. And no accomplishment is ever too small to be celebrated and be counted as a win!
Creativity as healing
As part of my rehabilitation when I was strong enough, my therapist suggested that I start doing artwork. I learnt how to hold a paintbrush and draw again and week by week I was gaining confidence in myself and in my artistic skills and was able to participate for longer. I found expressing myself creatively and learning new techniques incredibly healing, not only building strength physically but soothing the inward healing as well. I then furthered my artistry by creating pieces of artwork to sell in my local health practices that I attended. At a later date, exploring photography with my phone or my Dad’s tablet in my beautiful garden, to make photos into canvases and greetings cards too! It gave the creative side of my mind a chance to flourish and be excited about the arts again, but in a new way!
Finding my Identity - Your body is a temple
Over the years, a huge part of my story and in finding myself again, has been associated with body image. My appearance has changed pretty drastically with each year that has passed. Losing weight, gaining weight, being able to grow my hair a little and then losing it all.
I’ve not really known who I was and it’s been a real struggle to find my identity. As a girl, I think a lot of my dancer and performer friends would be able to agree and resonate; growing up going to dance classes, you’re rather exposed and open to a lot of comparison and competition. Not just in your abilities but your physique as well. Wearing leotards and tights and for shows crop tops and hot pants, I was much more aware of how my body looked compared to others my age. There have been times in my life that I’ve felt very self conscious and not happy and comfortable within my own skin. It’s definitely been a learning curve and how to love my body throughout all of the unwanted changes that have been thrown my way.
It wasn’t until I learnt what deep self love was, that I was truly able to value myself as a child of God and appreciate the body that he has given me, despite how broken I felt inside and out.
“Don’t you know that you yourselves are God’s temple and that God’s Spirit dwells in your midst?… for God’s temple is sacred, and you together are that temple.” 1 Corinthians 3:16-17 NIV
Back to the theatre
And finally, a part of life that I had been waiting so long for… being able to see a show at the theatre!
It had been so many years since I was able to attend a show. With the weakness in my body and the overwhelm of people, noise and lights it was just out of the question and not a priority in my world. However, when the year came that my sister participated in a West End summer school, their end performance was at Her Majesty's Theatre, home to the long running beautiful show The Phantom of the Opera. I was desperate to get there to see her perform! I wasn’t well enough to travel via public transport so had to be taken there horizontally by car. I was wheeled into the theatre and once again was propped up by a pillow to keep me upright but I was able to sit alongside my family to see the hour long performance. I was so overcome by emotion. As the curtain rose and the first song was sung, tears just rolled down my face. I clung to my Mum’s hand who was sat beside me. All the pain and tribulation getting there was definitely worthwhile to be able to see my sister shine and do what she loved most in the world. The performance was so moving and showcased a range of ages and talents across the genre of musical theatre. It was also a bitter sweet experience knowing how long it had taken me to get to that point and the dreaded recovery after the outing, but it was the ever awaited small sampling of life that I had longed for such a long time. It reminds me of the scripture Psalm 34:8 KJV “O taste and see that the LORD is good: blessed is the man that trusteth in him.”
I’ve found that if I’ve kept my trust in the Lord, and taken refuge in him, the circumstances of our lives may not change quickly or sometimes not at all. But with persistence, hope and never ending faith, the Lord is always with us and we know however long the journey, we are never alone!
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