The images on the big screen were hitting very close to home. I had to swallow hard to keep back the tears and a suppressed moan constricted my throat. Memories of my own history with Chronic Fatigue Syndrome had been stirred up, but the deepest resonance was to the immediate.

On the screen, dr. Alice Howland (Julianne Moore – Still Alice) was delivering a moving speech about her daily struggle with the art of loss, describing her path from being renowned professor of linguistics to facing the debilitating effects of early onset Alzheimer’s Disease.

“Good morning. It’s an honor to be here. The poet Elizabeth Bishoponce wrote: ‘the Art of Losing isn’t hard to master: so many things seem filled with the intent to be lost that their loss is no disaster.’ I’m not a poet, I am a person living with Early Onset Alzheimer’s, and as that person I find myself learning the art of losing every day. Losing my bearings, losing objects, losing sleep, but mostly losing memories…
All my life I’ve accumulated memories – they’ve become, in a way, my most precious possessions. The night I met my husband, the first time I held my textbook in my hands. Having children, making friends, traveling the world. Everything I accumulated in life, everything I’ve worked so hard for – now all that is being ripped away. As you can imagine, or as you know, this is hell. But it gets worse. Who can take us seriously when we are so far from who we once were? Our strange behavior and fumbled sentences change other’s perception of us and our perception of ourselves. We become ridiculous, incapable, comic. But this is not who we are, this is our disease. And like any disease it has a cause, it has a progression, and it could have a cure.” (Still Alice)

Alice’s words painted a reality Rob and I live every day. In the darkness of the theatre, my hand reached for Rob’s, gently squeezing his, re-affirming our bond, a kinship that I am only vaguely coming to understand.

Two years ago, mutual friends, with a not so gentle nudge, introduced Rob into my life. From the first cup of coffee we had shared, the big man with the gentle spirit captured my heart. His flair for the dramatic turned our conversation into an exceptional and riveting experience. As we flitted from the one topic to the other, we discovered that we had a lot in common. We were both recovering from divorce and trying to rebuild our lives. We agreed that we were not ready to plunge into the dating pool again and that we preferred our own company. With that settled, we were open to enjoy the conversation and each other’s company.

While entertaining me with stories of his immigration from the UK to South Africa, his beautiful hands rested on the head of a walking stick that he kept between his legs. Inevitable the conversation turned to the reason for his need of the walking aid. He told me about his life, living with Multiple Sclerosis.

After four hours and many more cups of coffee generously supplied by our friends, we parted our ways. Four days later, we picked up our conversation and from thereon it did not end again. We decided to share the adventure of rebuilding our lives and pooled our few meagre belongings and resources.

One thing about starting a new life is the loss of connection and stability, permanence and memories that are daily woven into the fabric of long term relationships; a shared history that forms the backdrop for our individual experiences. We are often not aware of the support and strength this colourful tapestry provides to us, until we are separated and removed from it. It is this loss that Alice expressed and which Rob and I share.

Choosing not to have a TV, Rob and I spend our evenings talking and debating, philosophizing or laughing, playing scrabble or reading. He entertains me with long, eloquent monologues about his previous life as a midwife and nurse, ward manager and medical equipment sales representative. Sometimes he will stop himself mid-sentence and ask, ‘Have I told you this before?’ More often than not, I had heard the story before, but I ask him to continue anyway and to tell me again. He tells me about the time spent in his white nurse’s uniform and his days in his three-piece suit as sales manager. He tells me about the years he could hold his own in the domain of medical care and those in the cutthroat, competitive business world.

As I watch him recall his memories and stories, I see Rob the storyteller. Not only was he severed from his tapestry of a shared history through his divorce, more so, MS had impaired his mobility and cognitive functioning and robbed him from the life that he had. It severed his connection with the stimulating and challenging world of medical research and development. It broke his ties and kinship with an elite profession. It left him only with the memories of the man he once was and the life that he had lived. Highly intelligent and sharp witted, days bogged down by brain fog annoys and frustrates him as it curbs him even in the most mundane of activities. He knew who he was back then, but who is he becoming now? Who will he be?

“I used to be someone who knew a lot. No one asks for my opinion or advice anymore. I miss that. I used to be curious and independent and confident. I miss being sure of things. There’s no peace in being unsure of everything all the time. I miss doing everything easily. I miss being a part of what’s happening. I miss feeling wanted. I miss my life and my family.” (Still Alice)

As I share no history with him, I cannot talk with him about that life. I cannot remind him of who he was and his accomplishments and as such reaffirm his identity woven throughout his life, by what he did and where he was. I have nothing to add or to remind him about. I can only listen. As I listen, I can see him for the man his is now. That, I can celebrate with him. That I can affirm.

I see a man with immense resolve and fortitude who, regardless of chronic pain and extreme fatigue, embraces each new day receptive to the possibilities it holds. I admire that in him.
I see a poet who had risen from the obscure and gloom to be a shining beacon of light. I am unashamedly a fan of his work, feasting on his poetry like a guest at a heavy-laden banqueting table. Not only do I delight in the product, but also in his creative process. I have the privilege of seeing it from conception to birth.
He is a brave adventurer, willing to explore an unknown path together with a wild woman, embracing a lifestyle altogether alien to him with gusto and good will. He continuously encourages me to be myself, giving me the space to be what I need to be in every moment. Regardless of the fact that he does not understand all of my passions and interests, he stokes the fire that keeps them ablaze.
I see him as the father of an adult son, whom he admires for the man that he became, taking the effort to spent time with him, build on their relationship and celebrate their live together.
A loyal friend that remains true, even if friends visit less often because their lives move at a different pace than ours.
I see a man full of potential regardless of the loss of mobility, cognitive functioning and memory.

I mourn with him for that loss but do not give into grief.

Only yesterday, he tried to convince me that there is great beauty to behold in a devastating veld fire, because of the potential for new life and growth that it holds. Our paths had crossed when we both were fields blackened by the devastating force of life changing events. I do not know what his landscape was like before, but with anticipation, I wait on the new growth that shows itself each day. It does not matter that I did not knew him for what he had been. I am thankful for the opportunity to know him now, for whom he is and for whom he is becoming. It does not matter whether he forgets the time or date, because the only time and date I care about is today and right now. We may not have memories, but we do have moments and we seek to live each one to the fullest.

That, I do enjoy and celebrate with him.

©Copyright Micelle Coetsee 2015

NOTE: Rob is a talented poet who had published two collections during the last year, an amazing accomplishment. Please visit his blog, The Wayward Warrior, to read more about him and his writing.


One thought on “ICU

  1. Reblogged this on The Wayward Warrior and commented:
    Micelle wrote this several weeks ago and I have struggled with posting it here. However, it does give an insight into my life, for those of you who may be interested!

    More importantly, I dedicate it to all who live with a chronic disease/illness/condition. We may be challenged, even ‘controlled’ by a health or life issue – but we are not defined by it. How we are defined and who we become is our choice. However ‘traumatic’ our situation, I strongly believe there is a reason and a lesson. It is up to us to see that and accept it. May you find your purpose and reason in all that you do and the choices you make. We are so much more than our body! How exciting! 🙂

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