Samantha Smith’s Story

Hi, I’m Samantha, I’m a 31 year old mum of 2. As far back as I can remember, I’ve always been the ‘girl with a plan’.

I learned from a young age that my happiness would be best served in a career which fed my soul and helped others. My education led me to training in Health and Social Care, where I stumbled upon a Psychology module and discovered my calling.

I had a strong desire to understand human behaviour. As I progressed onto a Psychology degree, I knew I’d found my opportunity to integrate this curiosity into a career helping others.

My strong maternal instinct meant that the other half of my ‘plan’ was to meet the love of my life, have two children together and live happily as a little family of four. Life had other plans. Aged 19, I fell in love and at 21 we were blessed with the first of two beautiful children.

The pregnancies were close together and I became physically unwell during both of them. My liver poisoned both myself and the babies, my kidneys stopped functioning and my pelvis fractured without any trauma. Doctors told me that my pain and illnesses were caused by a sensitivity to the extra hormones and my health would improve after the births. Both children were born prematurely with emergency deliveries.

One day in a lecture I suddenly lost sight in my right eye. Not wanting to make a fuss, I quietly left the theatre and caught a train back home. I went straight to an optician who immediately noticed that my retina had started to detach and the blood was blocking my vision. Months of tests found no cause and I was eventually discharged in the hope that it would heal and clear.

Pain, hospital tests and sleepless nights had made university difficult. My lecturers would tell me to put my studies on hold or risk failing; but I was determined to make the previous two years study worthwhile. I returned to my final year at uni  on crutches with my 2 week old baby strapped to me. I felt out of place and the gap between myself and my peer group grew as their conversations about parties and socials felt a world away from my life of juggling breast pads, feeds and nappy changes around hospital appointments. I could have easily walked away and thrown myself into the world of parenting and baby groups, but my determination paid off and I oozed with pride as I graduated with an upper class honours degree.

As the children grew, my health declined and I began to feel more isolated; my self esteem plummeted and my relationship with the children’s father broke down. Age 23, I found myself a single mother of two children under 2. My plan had failed.

I decided to see a therapist, which helped me rebuild my self esteem and come to terms with a new life plan. Determined to continue life as a young, independent mum, I began my second degree, a Masters in Psychological Therapies.

A year later, I proudly graduated again with an MSc, but my physical health continued to deteriorate. Waking up each morning and putting my feet on the floor became a lucky dip; some days I could walk fine and others I would ache, consumed with nerve pain and restlessness. Tests returned no answers, so I would hide my pain and lethargy, questioning whether it really existed.

I was eventually mis-diagnosed with fibromyalgia, hypermobility, ME and an autoimmune condition.

I used meditation and psychological therapies to manage the pain, but I’d become overwhelmed with desperation for answers. Why did life seem much harder for me? Maybe I was weaker than everyone else…. The negative thoughts would taunt me, and I would read self development books and medical studies in an effort to understand what was happening and stay focussed.

By the age of 27, I had graduated in 3 degrees; I had co-authored a best selling self help book and I owned a private therapy & health clinic in Manchester City centre. My experiences and pain had helped me to connect with my clients and support them through their own struggles and growth.

Over the next 3 years, I would help thousands of people with various psychological difficulties through my clinic and work as a writer. The power of therapy and self development filled me with enthusiasm, and as I watched my clients thrive, I realised that if it wasn’t for my own heartache and pain, then I wouldn’t have the honour of being trusted to support so many wonderful clients through their own struggles.

I loved my work and life with the children, but my physical health was continuing to decline, despite my efforts to manage it. I began to lose consciousness daily, I struggled to eat and I would wake up vomiting and passing blood most days. My joints would sporadically dislocate whilst sitting in session with a client, my heart was struggling, and the pain in my head and neck became excruciating.

I had seen hundreds of specialists, travelled around the country for answers, and yet no-one could figure out the cause. Maybe it was in my head? Maybe I was lazy and weak? Life was scheduled around naps and medication. I grew ashamed of my tiredness and pain because there seemed to be no cause…so I hid it from friends and family and pretended to be busy with work. A mixture of deep sadness and pain left me spending more time in bed.

Early 2017, I was really struggling to hold my life together. Socialising wasn’t an option if I wanted energy to keep my career and meet my children’s needs. I became a master of disguise; throwing my energies into helping my clients and being a present mummy. I felt like a fraud as I helped clients achieve their life goals and went home, crawling to bed in pain and tears as life went on around me.

Anxiously avoiding doctors’ rejection, I sought answers for myself. March 2017, I collapsed on a client in session, and I knew enough was enough. Desperately trying to hold onto my income and identity, I sought out answers online. I discovered a condition called Ehlers Danlos Syndrome and I begged a specialist to send me for testing.

She explained it was rare and unlikely, whilst reluctantly writing a referral, she became one of 7 doctors who discharged me from their care claiming that I was imagining the illness.

Finally, after 10 years of misdiagnosis, I was diagnosed with a rare and incurable condition called Ehlers Danlos Syndrome (EDS-Type 1). EDS is genetic and causes faulty connective tissue, wreaking havoc on the whole body. I’d had it my whole life, but at the age of 30 it was finally given its name, and I sobbed with relief as the professor explained the lack of understanding throughout our care system.

I felt sane and validated again…But, then he noticed another issue…. ‘You seem to have neurological damage,’ he said ‘I need you to have specialist MRI imaging of your neck and brain urgently, but it won’t be available on the NHS’.

1 month later, as NHS imaging results returned with ‘no abnormalities detected,’ my specialist private scans showed that the weight of my skull was too much for my faulty tissues to hold, and my spine was collapsing, crushing my brain stem and spinal cord. I was on the verge of internal decapitation.

I would need lifesaving neurosurgeries-surgery urgently, not available in the UK. It would cost in excess of $200,000.

Faced with what felt like an impossible situation and now too sick to play with my children I felt absolute despair.

Unable to leave the house or sit upright without extreme agony, I became wheelchair dependent and desperate. I lost my business, but I had a choice …. I could seek out the joy in the small things, or I could waste precious time drowning in depression. I flipped between depression and joy seeking as I tried to find a way forward.

A week later, I still hadn’t told anyone. I bumped into a group of mums at school and burst out crying over a coffee as I explained the situation. Less than 24 hours later they had planned the first fundraiser. A stranger was willing to bungee jump off a bridge for my life. I felt renewed faith. I found the courage to share my story online… I couldn’t have been further from my comfort zone as I switched from the helper to the needy. I asked for support and people came forward in the masses.

The media, the community and eventually people worldwide came together to support me as I shared my story online. These people became ‘my army,’ and together within just 8 weeks, my people raised the funds and sent me to Washington DC for the neurosurgeries.

This was just the beginning of my journey as the surgeries, recovery and psychological battle were harder than I could have ever imagined. After the neurosurgeries, there was a cruel twist as we learned that my condition causes pain relief to be metabolised within minutes, leaving me writhing in pain and unable to be induced into a medical coma.

There were times that I was too afraid to sleep for fear of dying; and times when I wanted to die for fear of living a life in so much pain. At my lowest ebb, I was placed on 24 hour suicide watch over 5 days in August 2017.

I finally realised that I had a choice….I could see this experience as a gift or a curse.

And in time I could see the gift…  a rather large one, all wrapped up in various colours and curious shapes. This gift was doing incredible things for me; it showed me which loved ones are here to stay; the ones who will never leave and always support me. It helped me to reconnect with old friends and acquaintances. It recalibrated what is most important in my life. It gave me a new sense of trust and understanding of my body. It would make me deeply aware of my inner strength and give me a sense of community. I would no longer wake frustrated as head pounded whilst the children bickered loudly at 6am; instead I could feel gratitude for their health and ability to argue and make noise. I would be challenged, inspired, humbled and motivated. Life would take on a new meaning… and I’ll have a lifetime supply of good medication.

Yes, there was a price… a hefty price to pay, but this gift is one which can’t be returned, swapped or given away and I would rather live a life seeking out positive meaning and counting my gains, than fearing a curse, over which I would have no control.

Perception became everything.

I held on, and over the following days, weeks and months I set new challenges to focus on, and with each success came a sense of achievement; I learned to walk again after each surgery, and I became independent for a few months until March this year, 2018, when we learned that the surgeries weren’t aggressive enough and we are now on a time limit to raise in excess of $100,000 again to completely stabilise my spine in order to avoid organ failure, paralysis and eventual death.

(https://www.gofundme.com/save-samantha-neurosurgery)

Life keeps throwing curveballs and there are times when I panic, feel overwhelmed and exhausted with the constant battle and pain… but I was given a gift, and an opportunity to use my experiences and pain to help others. I am petitioning for EDS healthcare in the UK and championing care and support for people affected by EDS. On the days when I feel I can’t take anymore, I think of all of the people who came together when I asked for help. People who gave their love, time and energies to keep me alive today and to give my babies their mummy back. We couldn’t have predicted that I would be in the 5% of people who requires more aggressive surgeries, but we can learn from our past experiences.

Reaching out to loved ones and strangers can make you feel vulnerable; but what price is vulnerability with the opportunity to experience how truly loving, and understanding people can be?

I was given a rare, incurable, painful and life altering genetic condition; and at the same time, I gained  a deep gratitude for life and incredible friends who exceed any expectations I could have ever had before.

My advice to anyone suffering with mental health issues?

  • Don’t compare your journey to others. It’s YOUR journey, and you are entitled to the feelings that accompany it.
  • Reach out to others, and if they’re not the right person then keep reaching out; people can and will help- no matter how impossible the situation feels.
  • And finally, it’s all about perspective; challenge yourself to find the joys- no matter how small… hold onto them one day at a time.

 

I have chosen to share my bangle with friendship quotes on it. Myself and a group of close friends all have the same one. When either of us are struggling, we wear our bangle and remember to reach out to one another. No matter how big or small the issue; its comforting to remember that none of us are in this alone.

-Samantha Smith

 

https://www.gofundme.com/save-samantha-neurosurgery

http://www.facebook.com/savingsamantha

#SaveSamantha


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