Monday, October 29, 2012

There Is Only One You

Today I thought about what it meant to be me, and I realized that the overwhelming truth of who I am can be expressed in the idea that there is only one me. Perhaps that is for the better! Imagine a squadron or a flock of me... how exhausting it would be for those who love me to find so many of me needing attention, and how exasperating for those who dislike me... oh my!

The truth is there is at any one given point in time and space only one version of any one of us. Yes, truly, There Is Only One You, and Only One Me. No matter where we go, no matter what we do, no matter what we might think of ourselves, there exists only the one version of each of us. I asked myself what that might mean for me, living as I do with illness. 

Illness isn't something that is without variability, in fact many idiopathic illnesses have lives of their own, unraveling over time in the lives of individuals affecting two people with the same illness in very different ways. Two people with very similar backgrounds and lives might find themselves with Crohn's but the illness would not manifest itself in the same way in both their lives. Each individual is already unique in their own special way... add to that a disease that creates extra layers of uniqueness, and the individual is even more different, even more unusual, yet not quite special, as no one really wants to consider that having a disease could make you special. It doesn't really, it just makes you different.

That difference is to be thought of as being something precious, though, because it is a part of who you are. It sets you apart from others, a lot like the other things in your life would. Your experiences in life make you who you are to a large degree, and illness is very much experiential. It makes your life uniquely yours. It is only because we do not see that everyone else is also different in and of themselves that we despise the "different-ness" in ourselves. We imagine that all around us people are perfect and happy, and that we cannot be so because our lives are broken in some way by chronic illness. And yet if we were to sit and talk to these seemingly perfectly happy people we might find that they too have some pain in their lives, maybe not of the body but in their soul. They too may have something that they struggle with everyday of their lives. They also may be trying to keep up the facade of being in control but in all honesty, many of us have facades that we maintain so as to manage life on a daily basis. Who knows what lurks behind anybody's mask? Pain? Hurt? Loneliness? Sadness? Despair? We wonder why people try so hard to keep these masks on, but we know that this is the way of the world. No one can lower their mask and show their true selves to us unless they trust us enough to do so. And sometimes we ourselves do not know if we can take the brutal honesty that the other shows us, neither do we know if we have it in us to respond in an appropriate manner.

And so we all tiptoe around each other, dancing on edge, to a very old tune that dictates our movements. I show you a little bit of who I really am, perhaps you respond in like manner. We meet, two souls, passing by each other in life, exposed for who we really are. Trust is built. And somehow, something is said or done, and trust is broken. Then rebuilt again, then broken once more. And over and over goes this dance. But each time we keep coming back to rebuild the trust because we are driven by our humanity. We know instinctively that it is the right thing to do. We recognize this deep in our souls. We dance this dance back and forth with many people in our lives. The ones who mean a lot to us. The friends who can hurt us because we love them. The ones we cherish and want to keep close in our lives. The ones to whom we say, I know there is only one me, but a greater knowledge and a deeper truth I have found is that There Is Only One You. No matter what shape I am in, no matter what my life with illness may hold, stay in my life. I am more than just myself when I am with you, I am much, much, more. Together, There Will be Only One "Us".

Thanks for reading,


Monday, October 1, 2012

Alone, But Not Quite Alone

Last weekend I met up with a newly formed group of patients and parents of young patients with Crohn's and Colitis. The Crohn's and Colitis Society of Singapore was formed in May 2012, and is slowly growing. I was privileged to meet with folks and listen to their stories and share my own. We also had a lovely session of Art Therapy which was fun and enlightening.

As always, meeting with other patients reminds me that I am not alone in my journey, and neither are these patients that I met. We are journeying together, yet we are essentially alone to some extent. The nature of both Crohn's and Colitis is such that as idiopathic diseases they practically have minds of their own. They manifest differently in different individuals and the way the disease progresses in me will differ from another patient's experience. What works for me may not work for them. Medications that helped me may worsen someone else's condition, or not, but that is something nobody can predict. In essence, therefore, my experience, while useful in helping others understand what they go through is always simply that - My Experience. It can never become someone else's neither can I take on the experiences of others as my own.

Does that make the sharing of experiences useless? No, it doesn't. It is in fact a very useful endeavour. Useful because newly diagnosed patients can find hope in those who are doing well and living life as fully as possible. Useful because those of us who have mild to moderate disease can find reason to be thankful that we are spared the severity of disease some others face. Useful because parents whose children have disease can see that patients can be happy, and live life, hold a job, get married, have children... in short, live their lives There is hope, and hope is so important to keeping going, especially when things are difficult.

For this reason I keep going back to meetings of patients whether in organized formal groups or small settings or informal tea sessions in a cafe. It is not because I feel I desperately need to connect with other patients... for some reason, perhaps because I have been ill for 15 years, I have reached a state where I do not desperately need assurance that all will be well, and I have accepted the disease for what it is and my life goes on regardless. I meet up with patients because I sense there are many out there who need assurance. There are many out there who feel alone. There are many for whom this loneliness is overwhelming, and frighteningly so.

It no longer overwhelms me, so perhaps I can help others who are lonely and afraid of that loneliness. I know deep down inside my soul that I am essentially alone in my journey. On some intrinsically deep level I understand that no one can fully enter into my pain or my sufferings or my mind or my heart as I journey with Crohn's. I know my husband cannot fully understand, neither can my children, my mother or my siblings. No one can. But that doesn't leave me despairing. It's just a fact of life. Yes, I am alone, but I know I am not quite alone. Because other patients who suffer endure experiences that approximate mine. Sure they're not the exact same experiences but they are similar enough to enable them to understand, and that understanding is what binds us together in mutual support.

So when one young man shared about a perianal fistula, I remembered my own surgery for one. When two young men spoke of going on liquid diets for 2-3 months I remembered going without food for weeks on end too. When someone shared about surgery I remembered my own experience. Tears filled my eyes... I knew what he had experienced. When parents spoke of their children going without food and drinking Modulen to go into remission from Crohn's I knew exactly what they meant. I knew the tears they must have shed, because I too shed many. I knew the joy they must have felt when their child was declared well and able to eat, because I too had rejoiced with my son. I know the dread and fear they hold unspoken in their hearts that the disease will return because I too live with that fear.

It is this ability to empathize that is born out of our sufferings that keeps me going to support group encounters. If another lonely soul knows someone understands then that is enough. The meeting of mutually suffering souls happens in such moments, and is beautiful. In fact I sometimes think there is something divine in it. I don't know why. Perhaps because the meeting is one of souls, and that always has a touch of the divine about it. That point in time when you look into someone's eyes, and you know that they know that you understand, and that they are grateful you do... that moment is magical, at least it is for me. Hopefully in time patients who feel afraid to be alone will also come to a place of peace and a deeper understanding of their own journey, to a place of acceptance that while they are alone on some level, they are not fully alone.

I am grateful I met some lovely people who are reaching out to others with Crohn's and Colitis. I am grateful that in the meeting of hands of greeting and the exchange of words of introduction, in the process of sharing and doing art therapy together, some meeting of souls occurred, at least for me. Kindred spirits, mutually suffering souls, call it what you may. I am alone, but not quite alone, and that gives me hope.

Thanks for reading!

ps If you would like more information about the Crohn's and Colitis Society of Singapore do email me. I'd be happy to put you in touch with the folks that run it.