One day at a time – Reclaiming my life

MANDI ROMAIN

The difference between school and life? In school, you’re taught a lesson and then given a test. In life, you’re given a test that teaches you a lesson.” –Tom Bodett

 As I write this article, five years after my ordeal, although I’m filled with a sense of gratitude, there are many questions that still remain. May 3, 2008 should have been a regular Shabbos of family, community and friends. Instead it became the date my world was turned upside down, a day that’s irrevocably carved in my consciousness as a catalyst of change, when my entire life was transformed on every single level – physically, emotionally, spiritually and psychologically. It was a life I really enjoyed, crammed with endless possibilities. At 25 I was finding my feet in the private banking world; I’d just started a new relationship with the man who was to become my husband; my social calendar was full. Filled with the invincibility of youth, the last thing I expected when heading off to a function that morning, was that my dreams and expectations would be shattered in an instant, that I’d be literally brought to my knees, and that Life as I knew it would never be the same courtesy of two trestle tables collapsing on my left leg…..

 “I hear a loud crash and stand there, unable to move. Searing, agonizing pain hits me like a ton of bricks, taking my breath away. Everything slows down and sound recedes- I feel as if I’m submerged under water. My mind’s detached and strangely calm until shock, adrenaline and pain set in. The agony I’m going through takes the word Pain to new heights. I’m nauseous and light headed, and the sight of my foot when my boot is removed – swollen and discoloured within seconds – makes the nausea even worse. The pain is unbearable – I don’t know where to put myself.

 The world gets darker; my mind goes blank. Thoughts come and go- Please don’t let me die….

Everything is hazy… am I dead? No, I can’t be- I can hear the sound of voices and the rain. I’m battling to get air into my lungs; my breathing is erratic; I start to hyperventilate.

All sound fades; the rain is gone. And then there’s nothing…..
A lifeless broken porcelain doll – that’s how people described me. A rude awakening: hazy bright light as I’m placed in a car. Voices. More voices and utter confusion. Then one dominant thought- praying and asking G-d to save my leg. Is that me in a wheelchair? What’s happening? My leg – I cannot feel my leg. How can it be, since the pain is all-consuming? I’m now on a table, semi conscious and pretty much out of it. I hear voices: nurses, my mother. There are fluorescent lights above my head, people are prodding me, taking my pulse and then, once again, I’m gone…. I wake to the sound of a man’s voice – another doctor. I try to recall what has happened but a searing pain shoots up my leg and I begin to cry.

More corridors. I’m there and then I’m not. My boyfriend Martin’s voice and gentle touch on my cheek wakes me once again. The look on his face- the concern and anxiety- mirror my thoughts. I’m wheeled into Xrays but the minute they touch my leg I’m consumed by the most excruciating pain and scream and scream…. I’m back in casualty. Don’t panic. I stare at the fluorescent light. What’s happening? Where’s Martin? Oh, there he is, right next to me. My mother and a nurse- is assisting with the removal of my stocking to see what needs to be done. The tears pour down my face; my screams fill the room. With Jill (Martin’s mom) on one side, Martin on the other, I surrender. Aaaaaargh, I’m in agony!

We’re informed by the doctor that since I haven’t broken anything I can go home. Home? Like this? Even if I can’t feel my leg and am in so much pain?  How can there be no problem? I’m placed back into the wheelchair and wheeled out to the car to head off home. As soon as I hobble through the front door on my crutches, battling to move, I begin to cry. There’s no familiar feeling of safety: everything is different. The energy in my bedroom seems strange: I feel like I’m living a nightmare. I lie on my bed with my leg propped up and sob my heart out. How can there be nothing wrong with my leg? Why does it feel so dead yet there’s so much pain? The questions flow constantly and I’m filled with anxiety as there are no answers. Somewhere in the back of my mind I start formulating a plan. Work hard; do my ‘homework’ – whatever it takes to get back to a normal life. I’m determined to recover one hundred percent, the magical figure that has always been my goal as a typical A type perfectionist. There’s no way that I’m just going to lie here and do nothing: my world is so much bigger than this. But the niggling doubts remain. I ask my mom when she thinks I’ll be back to my old self again. Her response ‘‘I’m not sure’ sends a shiver down my spine. What does she mean? It can’t be! I’m the one in the family who has always got on with life. I’ve never been ill. Yet here I am, the ‘strong’ one, prostrate on my bed, faced with uncertainty. It’s got to be a bad dream – I’m going to wake up and find everything the way it was. I pinch myself to check if I’m asleep and am devastated to discover this is real!

Two days after the accident we consult an orthopaedic surgeon who explains that two major nerves in my leg have been damaged. I’m carefully monitored over the next two weeks, although nothing can ease the unbearable pain….. I’m physically, emotionally and mentally crippled. The  extreme swelling and bruising has increased, I have an open leg wound and flaky skin.  The biggest concern is that my leg is cold. It didn’t have a pulse and when I see the doctor three weeks later he suggests amputation. I’m so catatonic that I don’t even flinch when he mentions the word. I’ll try anything to take away this terrible pain. I consult another orthopaedic surgeon for a second opinion. I fervently hope that he’s going to provide a more substantial diagnosis which will enable me to know why I’m in such pain and why my leg’s not healing. Uncertainty breeds an array of anxiety and concern and I work myself to a fever pitch as we sit in the waiting room. I feel like I am on trial and my fate is about to be sealed. He asks me to describe what has happened, what I am feeling and where I am right now. As I do so, the tears well up and I see the compassion in his eyes. He tries his best not to reveal his shock when he examines my leg, but his face indicates the extent of the damage. He informs me that I have a syndrome called Complex Regional Pain Syndrome – CRPS. I don’t even internalize what else he says. I finally have a diagnosis. I’m not going mad, and I’m not acting out. There’s a name for what I’m going through- it’s a huge relief. Certainty at last! What the syndrome entails and what the outcome will be is irrelevant right now. I’m overwhelmed with gratitude that I have someone who can understand, someone who acknowledges that what I’m experiencing is something real! He tells us that Complex Regional Pain Syndrome is often misdiagnosed and overlooked by medical professionals despite the fact that it’s a documented condition in the medical journals. It occurs in about two percent of the population and affects the sympathetic nervous system, the result of a severe crush of nerves and trauma. It’s such a strange thing to conceptualize that your brain and motor and sensory parts of the brain can shut down and not recognize a part of your body. It’s like having a stroke – the connection between my left limb and my brain just isn’t present anymore. The Doctor explains that this is no easy baby in terms of treatment, that it may take years to get relief and that there are no guarantees. He refers me to a pain specialist. I don’t really take in much about what he’s saying as I’m celebrating the fact that I have a diagnosis. Forget the details- that’s for later- right now, I have something to work with!

I know at last my journey to recovery is about to begin. I’m on a high as we drive back home but my parents caution me by saying this is going to take a long time and I need to prepare myself mentally. Long time? What do they mean by ‘long’? I head straight for the computer when we get to the house. I need to gather as much information as I can about this syndrome so I’m able to take it on from a position of strength. As I start to read, the devastation sets in. My heart races, I feel nauseous and light-headed. WHAT? This cannot be the diagnosis. The elation and relief turn to panic and apprehension. This syndrome sounds awful. The stories are horrendous, the statistics even worse:  depression, suicide, loss of functionality – the list goes on. I click off that webpage, turn off the computer- I’m not going to look at the other stories. What’s happening? Will I ever come right? Is this the norm? I lie down absolutely shattered.

Out of suffering have emerged the strongest souls, the most massive characters are seamed with scars – EH Chapin

My journey of recovery was about to begin, I had tried to go to work for two hours a day but even that was exhausting and I couldn’t cope. I was put onto disability which was exceptionally difficult for me to deal with. My work meant so much to me, and I had to discover over time that work does not define who you are. It’s a hard pill to digest but something I had to learn very quickly and accept. Yes, this had happened to me, but the question remained: why?

The key factor was that I had to start to focus on what I had and to start reclaiming my life. I decide to do just that. My new full time career was to rehabilitate my leg and of course myself. My whole life had come to a standstill and I was now completely dependent on others – I had to be bathed, driven everywhere and assisted with menial tasks like getting dressed. The smallest task seemed insurmountable and I was constantly consumed with pain.  My suffering was a terrible sentence and I was filled with worry, fear confusion and self-doubt, yet somewhere deep inside I had faith that I would one day walk again and one day walk down the aisle and dance at my own wedding.

We all cope with pain differently, some deny it, others take medication and numb themselves. For a long time I am numb. I’m gradually weaned off the medication over a period of 15 months and come to realize that you need to be fully aware – mentally, emotionally, physically and spiritually – to triumph over something like this. I have an exceptional team of specialists at my side me every step of the way including a specialist pain management physiotherapist. She assists me in recreating the pathways to my brain and opening new channels so that new messages from my leg can be transmitted to my brain and eventually over time will reconnect. I’m determined to work hard to make this happen so go to therapy twice a day everyday for over 2 years.

I also have to deal with the fact that the injury has completely altered my life. I’m supported every step of the way too by my unbelievable parents, my husband (my boyfriend at the time), his family and some friends. Trust and belief are vital parts in this process and I place these in my incredible therapy team: my physiotherapist, psychologist, hydrotherapist, rehab therapist, OT, biokineticist and orthopaedic therapist and of course – Hashem!

At every stage of the therapy and recovery, a different medical practitioner is added to the team depending on what I need.

I face this harrowing experience head on, armed with nothing but courage, limited pain medication and alternate supplementary modalties and of course the unconditional, unwavering love and support from my family and husband. The hardest thing to accept is that the pain is not going away. There’s no quick fix – it simply needs to be managed. Once I accept this and my new life, I’m able to cope much better. Progress is admittedly slow and I need to stay positive and focused. It’s like chiseling away at a brick wall. Eventually after 2 years I’m able to put my foot down on the ground and start the process of learning how to walk again aided with my crutches. Some light! It’s very much a mind/body game. When your body gets tired or fed up or is in so much pain, it’s up to the mind to push on. TO NEVER GIVE UP!!! Slowly the pain becomes manageable. On a scale of one (no pain) to ten ( the worst pain) I go from having ten plus pain to somewhere around 6/7 within 18 months. To me that’s a miracle. The words of William James reverberate in my head: ‘I guess one of the greatest revolutions of my life is the discovery that individuals can change the outer aspects of their lives by changing the inner attitude of their minds’.

The years pass and by 2010 I return to work in a different role. Something else I have to accept – the fast-paced, go getter, private banker is now in a more sedentary role. However I’m making good progress: being able to get around on once crutch is an absolutely miracle! I don’t remember life before the accident – it’s all a bit of a blur. I remember bits and pieces but the Mandi pre-2008 is somewhat different than the Mandi two years down the line. My outlook on life, my appreciation for every little thing, the gratitude and faith I have is something so genuine. The over-riding question remains ‘what will life be like going forward’? That’s the scary part, trying to refit into the real world.

Living with pain and severe disability is the most humbling experience. I create an acronym for my syndrome which gets me through many dark days – Courage,. Resilience, Perseverance and Survival. It takes patience to stay motivated because no one can give a definite prognosis. I realize over time that I do have a choice. I can either give up or fight like hell. I can’t deny what’s happening to me so I choose to tackle the pain and life altering event head on and try to slowly rebuild my life. By 2011 I’m still at the bank trying to rebuild my career, slowly getting my confidence and energy levels back. I attend  biokinetics and hydrotherapy to regain the strength in my leg. I have lost a lot in terms of mobility, things I am able to do and not do, but there again I can either focus on what I can’t do and be miserable or focus on what I can and feel so unbelievably grateful and blessed that I am now able to do certain things that 3 years ago was   impossible. My achievements are mounting up: I have gone through the developmental stages of a child, having relearned how to walk and to balance.

Einstein put it very aptly – “I must be willing to give up what I am to become what will be”. I have to at times release certain feelings, I need to start realizing my potential and strength and hopefully I will rise above what I am today. In every seed there is a tree…. In every bird a flock, in every fish a school, in every boy a man, in every girl a woman – I cannot let this situation bury my potential. I need to refocus and start to realize that “The best day of your life will be one in which you decide your life is your own. No apologies or excuses, no one to lean on, rely or blame. I have been given a gift and reborn. I have the ability to work again and now need to find what is right for me, what environment best suits the person I am becoming. The gift of life is mine – it’s an amazing journey – and I guess it’s up to me to take responsibility for its   quality. 

I have come to value time – my leg has taken a tremendous time to heal and get better and it’s the power of time that’s enabled me to recover so well. Since time is such a valuable commodity and the most precious of all possessions, I refocus on how I spent my time and who I spend it with. This is a crucial aspect of my healing process. For me to ensure I secure the greatest return – happiness and contentment – I need to surround myself with people who do not take away from me but rather encourage me. I am extremely blessed to have such wonderful parents who give up so much in order to could care for me. I am where I am today because of their selfless attitude, their unconditional love and support and encouragement always. Martin, my husband – he was an absolute pillar of strength and stuck by me throughout the ordeal. A man of great strength, fortitude and insight. My brother, sister in law and nieces and nephew also played such a vital role in my healing process- at one stage my 18 month old niece and  started to walk at the same time! My in laws and their entire family showed such tremendous support, love and concern and everyone together assisted me in achieving my goal – TO WALK AGAIN.

It’s often during our lives that we do not appreciate our parents and family until we are in an unfortunate situation or someone passes away. It is only at that time that we realize the value and importance of our family and we start to appreciate them. I learnt and continue to show my untold gratitude to those around me. I would not be where I am today if its wasn’t for them. Throughout the process there is a tremendous sense of gratitude to Hashem for always being my guiding light. I am really a walking miracle as I SHOULD not be able to walk the way I do. I am beyond blessed and fortunate and the Brocha one says in the morning of Mode Ani and thanking Hashem for all the legs one is given resonates so much with me. I feel so blessed.

To Martin – I truly believe we are richer people for what we went through as a couple. We have built up tremendous respect and awe and understanding towards each other. We worked as a coherent team and we both learnt to give and communicate effectively. I came to the realization that I needed to create an environment that was not one of a wounded soldier but rather one of happiness despite the circumstances. Happiness is a result of love and I most certainly was in love and loved by Mart and many others too. I needed to take action, try to produce happiness in my life and that would inspire others to stay positive and in Mart’s case for him to see that there is light at the end of the tunnel. Mart allowed me to live as a normal existence as possible and that is also one of the reasons why I am back on my feet again. He was caring and sensitive and showed tremendous concern but pushed and motivated me in a very positive way to get moving again. “I have a dream”. This phrase was immortalized by Martin Luther King – it was a dream that he never realized but a man who dreams is a man who cares and a man who cares makes a difference. There are so many people who made a difference in my life and enabled me to actualize my dream – to walk again.

And so…our wedding! I don’t want to get married in South Africa after everything that’s transpired and so I plan a wedding in Israel. A special, spiritual place that means so much to all of us. The big day finally arrives.  August 7, 2013, Rosh Chodesh Elul. We choose the date because of its meaning but also because of the fact that Rosh Chodesh is a symbol of new beginnings. To get married is every girl’s dream but for me this means a whole lot more. This is a milestone that I’ve aimed for for so long and now it’s here. I still have pain and can’t do many things but I refuse to let any of this get in the way. On this memorable day I just don’t care. I’m going to have the time of my life and I sure do….

Being in Israel allows us to partake in so many special moments: Davening at the Kodesh Hakedoshim; the men go to the Kotel on the day of the wedding, the food, the view and venue and the spirit of people in Israel to be Besimcha.

I stand at the entrance of the room filled with all our family and friends, my parents on either side of me and look up to see my future husband waiting under the Chuppah. Our dream is happening right here, right now. I slowly walk down the aisle feeling Hashem’s Shechinah with me. No words can describe this other than this is a miracle! My miracle. Our miracle. What a way to start the rest of our lives!