Close up of pink and white pills with smiley faces on them, resting on a white table.
By. Lisa Courtier
Recent events have really had me taking stock. I find I am rather uneasily, questioning myself right down to a genetic level.
As I stood at my kitchen counter tonight, unwrapping an innocuous looking white paper package, carefully sealed with a sticky label bearing my name and address, I caught the tiniest flicker of delicious anticipation, swiftly swept away by a curious pang of guilt. As I pulled a plain white box, again adorned with my name (in case there was any doubt this was for me), from the little paper bag, opening it and then popping the blister pack to deliver a tiny pinky, beige, chalky looking pill onto the chopping board, my wave of conflicting emotional responses puzzled me. I felt for a second as though I too was a wrapped parcel, covered with many layers of paper. Some layers ostentatious, gaudy even, some just worn, tatty and brown, some grey and matte, some sparkly...so many different layers. And as I stood there staring down at that pink and beige tablet, I began to wonder why the layers were there in the first place and who or what was it that had wrapped them up so effectively!
Of all the questions buzzing around my head like a swarm of annoying mosquitos, there was one question that could be heard above the hum of all the others...and it was this question that caught my heart in an icy grip!
“Am I just like my Mother?”
That thought knocked all the air from me, winding me for a split second. This was not the first time I had asked myself that question!
My issues are complicated, all that wrapping of all those layers, tied with string and sellotape, knotted and stuck together in a way that would make a game of pass the parcel a frustratingly impossible endeavor...not to mention a lengthy one!
The pill I had freed from its plastic and foil confines was a sleeping pill. As I glanced at my glass of squash, deciding if I would need to refill it to swallow said pill, my ADHD brain was able to contemplate whether or not I would need to take my nightly dose of Codeine too! Ooooo! The prospect of a full nights sleep after that wonderful, floaty, drowsy feeling you only get from strong medication, thrilled me a little and that’s when the guilt struck!
“Oh my God...I am just like my Mother!”
My Mum had serious mental health issues all of her life that had gone mistreated until recently! Ironically it was only recognized on December 23rd, this year, at 77 years old. That day she was sectioned into a psychiatric ward for Dementia patients who have lost all grip on reality and pose a danger to themselves and others! She was living in a different world, a never ending series of hallucinations and delusions. Apparently, her one remaining memory replaying over and over like a bad television re-run. Of all the memories she could have been left with, she found herself reliving her worst, trapped as a little girl at a time of terrible trauma! In this memory, she is unsafe, and under constant threat from invisible abusers.
Of course she was shouting, it made sense that she attacked those around her...we were her tormentors! On that day, delivering my mother to the hospital, my Dad sat with her holding her hand, wiping the tears that were silently running down his cheeks. It was unbearable to see the pain in his face! My father, ex military, so strong and powerful, was crushed! After the initial ‘check in’, mum was led away to be examined by a medical Dr. and we were ushered into a room to chat to the charming, Greek, Consultant Psychiatrist that ran the secure unit.
He wanted to know it all and as Dad and I sat hand in hand relaying the terrible story of Mums traumatic childhood and the lasting effects that shadowed her into later life, the Consultant looked as though he was going to burst into tears along with Dad and I. What a sorry sight we must all have seemed.
After sharing every harrowing detail of what we knew, resigned to the fact that there was more that Mum could never speak of, the Consultant surmised that Mum had suffered all her life with a Personality Disorder. She had been treated for Clinical Depression for many years, but all she had to show for that was a long lasting addiction to prescription medication!
Now, can you see where my fear is coming from?
Mum had also suffered her entire life with terrible gynecological pain...after her womb was removed in her 40s, the pain remained despite further efforts to ease her suffering! The Consultant guessed, and I strongly suspect he was right, that her pain was indeed ‘functional’ because, as her Alzheimer’s progressed, her pain disappeared!
Yet another cruel similarity we share!
In 2009, just one year after I had undergone 3 traumatic major abdominal surgeries in one 8 hour stint, I was diagnosed with Multiple Sclerosis! Now that was a kick in the pants, I can tell you!
I had been presenting with bi-lateral numbness and tingling from the neck down and after a visit to the Chiropractor, suspecting I had a trapped nerve in my spine, I was referred to a neurologist! Feeling rather numb, I jumped onto this new conveyor belt and just rode it where ever it took me! The next step was an MRI of my head and spine. As expected there was a little white spot of what they call ‘high contrast’ on my brain, or in other words a ‘lesion’! Another tick in the MS box!
Unfortunately…or you could argue fortunately, my Neurologist had a further, non-related discovery to tell me.
“Lisa, in doing this scan we have also found something else…”
Huh?????
“I have referred you to a Urologist”
This time out loud…”Huh???”
“The MRI has also found that there is a problem with your left kidney. It appears to be severely engorged.”
“We have also booked you in for a lumber puncture. You have the lesion, but we need more before we can make a formal diagnosis, but I suspect it is likely that you have Multiple Sclerosis!”
I must have looked a complete idiot, sitting there, mouth open, blank expression on my face, trying unsuccessfully to process all this disturbing information. Being fiercely independent and not wanting to put my husband under any more pressure as he was trying to rescue our business and keep the roof over our heads, from the recession we were experiencing, I had gone to this appointment alone!
With a plan in place and appointment times pending with various departments in the hospital, I walked back to my car. As soon as my bum hit the seat a wave of panic engulfed me and dragged me under. How to explain the feeling that overwhelmed me, rendering me incapable? Drowning! I felt as though I were drowning! Unable to catch my breath, a band tightening around my chest. My heart racing, my head spinning, the floodgates opened and I began to cry, sat there in the car park, in the drivers seat, car door open, one foot still on the tarmac!
I was terrified beyond measure: what the hell was going to happen to me? Was I going to die? End up in a wheelchair? In constant pain? What kind of mother would I be for my children? Had I brought this on myself? A lifetime of eating disorders and poor choices, was this my fault? Was this my punishment? How could Steve love me in diapers if he had to change me and wash me every day? And this was just the MS, at this point I wasn’t sure if I had kidney cancer or kidney failure…
Steve phoned me, obviously anxious to get my results too. Somehow he was able to make sense of my incoherent ramblings between sobs and, like my knight in shining armour, within 30 minutes was by my side, scooping me up, leaving my car abandoned he drove us home.
The funny thing with life is that no matter how bad you feel or how terrible things get, that conveyor belt just keeps rolling! I had my lumber puncture and sure enough, there were indeed ‘Oligoclonal bands’ present in my spinal fluid. And in usual fashion, the procedure did not go smoothly. There is always a risk of a CF leak after a lumber puncture (Cerebral Fluid leaking from the small hole in the spine) and of course, that happened to me. It presents with a blinding headache as the reduced fluid around the brain has your brain dropping lower in the skull, resting on all the pain receptors!
I was admitted back into hospital where I stayed for 5 days. They attempted a ‘blood patch’ procedure, where they take you into a sterile theatre and withdraw blood and inject it into the hole in the spine. The theory being that the blood will clot and plug the hole. It didn’t work, so I was resigned to IV morphine and laying flat for the remainder of my stay until the pain eased.
The Urologist was a small, adorable, jolly Irish man and I liked him instantly. Not at all the oddball that I had been warned all Urologists were. It turns out that my left kidney wasn’t functioning and after a barrage of further tests, including nuclear scans, I was diagnosed with a blocked Ureter.
More surgery required.
Suffice it to say, those 2 years were incredibly traumatic on my body and my mind! My days became just a series of hospital appointments and a new way of life. This was my lot and I accepted it completely.
As the years passed I developed further MS symptoms, began the regime of daily self-injections, resigned to the fact that the treatment would make me feel as though I had the flu every day for the rest of my life…but strangely, I never developed further lesions! My neurologist at the time explained that the diagnosis process isn’t an exact science, that everyone presents in their own unique way, and as such was happy for me to continue treatment based on old evidence and my worsening symptoms.
In 2012, I stopped treatment, choosing quality of life over quantity! The drugs were making me miserable and stopped me from enjoying the days of mobility with my kids that I had left. I became determined to grab every moment with both hands, go zip wiring and rock climbing with my boys. There was more to life and I wanted it!
In 2015, my husband was diagnosed with head and neck cancer and in the same week, our business went into voluntary liquidation! Ouch! Difficult days lay ahead of us, difficult months as we embarked on Steve’s grueling treatment and recovery, whilst closing our business, selling everything we owned and trying to feed our 4 teenage boys. At one point, we were just 1 week away from the food bank. Life had never been so hard.
But here we are in 2020, still alive, still fighting and getting our shit together…finally! These last few years have been a real reality check, of what is truly important in life, of the healing that is required to enable us as a family, to access a fulfilled life. Lots of painful self reflection, epiphanies, and rude awakenings…
Having moved to a different part of the country to enable us to rebuild financially and emotionally, I was referred to a different Neurologist. He questioned my diagnosis, suspecting that the initial MS symptoms had been an isolated event! Apparently that’s a thing. That would explain the one lesion on the brain, but it didn’t explain the other weird and wonderful neurological symptoms I had been experiencing! Another mystery to be solved…more tests! It was established that the symptoms were all sensory and definitely neurological, but try as they might, they could not find an answer!
Already suffering with depression and anxiety, this uncertainty was dragging me further and further down into a pit and I was terrified I would never be able to escape! I made a decision…’NO MORE!”
No more tests, no more symptoms, no more doubt, no more waiting for the axe to fall! NO MORE! I was done! I am NOT ill, this is NOT happening! I began to suspect that I was doing this to myself! That somehow I had created a self-fulfilling prophecy of pain and suffering and ultimately death…after all, I was my mothers daughter. That had been her life…that still is her life!
Interestingly enough, my consultant was following a similar thread and referred me to a Neurological Psychiatrist.
The shame was unbearable, but I was done. I told the consultant everything. Every terrible detail of a life that had lead me to this point, in her office, crying uncontrollably. The childhood traumas and the traumas that I had faced in adulthood. The physical violations, the emotional and physical beatings, the sexual assaults, the eating disorders, the OCD, depression and anxieties. In this time, sitting with her, despite numerous years previously spent in therapy, I recognized that the only time the abuse ever let up was when I was ill, and that when you are unwell, people are kind to you, and the attention is positive.
Again, shame consumed me.
“Am I a hypochondriac?”
“No, you are not! Your symptoms are real, you haven’t created them. It’s called ‘Functional Neurology.’” Functional Neurology (FND) is a medical condition in which there is a problem with the functioning of the central nervous system and how the body sends and receives signals. A good example of how to view FND is that it is a ‘software’ problem as opposed to a ‘hardware’ problem! It is suspected to be triggered by physical and psychological factors, such as chronic pain, stress, fatigue or injury. It is more common in patients who have experienced trauma.
Unlike hypochondria, people who have FND actually have abnormal brain scans which goes to show the physiological impacts that FND can have.
As my 2nd appointment came to a close, I was willing to accept that this could be the reason for many of my physical symptoms, but not all. Feeling ashamed, guilty, and more than a little pathetic, I made a decision that this would not be my life. The consultant looked at me sadly,
“This is not your fault, Lisa, this is not all in your head. You have not made yourself ill”
“I wish there was more we can do for you. You would benefit from treatment, but we just don’t have the funding. The best I can offer is some reading material, and a website to look at!” “We’ll see you in a year!”
Wow! That was it. Drop a nuclear bomb on my lap, blow up everything that I thought was my life and then…leave me picking up the pieces! What the hell was I supposed to do with that?
This year has been hard, I am just beginning to see the light at the end of what has been a very long tunnel! Watching my mum, slumped in a chair swearing at people we can not see, terrified and lost to us, I feel an intense pressure to sort my shit out! Mum never faced her demons and spent a life in pain and suffering. Suicidal and unstable, her trauma has her trapped! I am terrified that her story will be mine, and as I place that little sleeping pill on my tongue I vow to think about all that tomorrow…
This will NOT be my life.
Lisa is pictured wearing a black sweater, white shirt, and black and white scarf. Her hands are up while she is speaking and she is smiling. She has dark, shoulder length hair.
Lisa Courtier is the mother of 4 teenage boys, a motivational speaker, and coach. You can find more of her work at https://lisacourtier.com