Excuse Me, My Brains Have Stepped Out

by Pandora Poikilos

  Appreciate the pain you have. Now, on some days Stubbly gets so bad that I almost feel like I am in a scene from Gulliver’s Travels where my head is tied down with very thick rope and there are little people running all round my head banging and constructing away. The pain I felt as I came out of surgery and the pain I feel on the bad days I currently have, I do not expect everyone to understand nor do I expect people to run around my whims and fancies, although some quiet would be a great help. However, when someone says, “I have a bad headache” I may not snicker but then again, I may not be the best one to seek sympathy from either. It vexes and irritates me when I see people with controllable medical conditions such as certain types of diabetes, carry on like nothing is wrong, because, give me one day, just one, when there is a way to control CSF (brain) fluid or to know what triggers its increase. I will try it all, with a smile on my face no matter how painful it is. Yes, I may seem selfish when I cannot relate to pain which pales compared to what I am going through. I also know that it is best to appreciate the agony that you do have, because it might just be worse.

  Do not take life for granted. I might be exaggerating but this phrase has easily been said a million times over. In different situations, in different languages, by different people from different generations and yet, we each only realize the value of this lesson when we ourselves are faced with a shattering loss that life crudely offers.

  I could go on and on Dad but let me just leave you with one last scenario about how precious I think life is. Imagine a bright eyed five year old playing with you and he circles your neck with grubby cheesecake coated fingers, rubs your nose with his and says, “Can you carry me?” Your heart breaks, more than once, when you think how you have to say no to him. That he is just a little too heavy for the tube in your body to bear, that you have just had a VP Shunt, that this is major surgery. Yes, there will be some intense explaining that needs to be done. He will either not understand what you tell him or he will forget in less than five minutes and run off on his next conquest and come running back to you with another hug and even more love. He is a child with so much to give and a very short memory but how will it make you feel?

  MOMMY’S BOY

  Now, Dad, I would really like to think that at some point men grow up. That they let go of their mother’s apron strings and make their own life-altering decisions. This is well and true for some men, at least. Others will probably be 45 years old and asking Mommy if they can take their wife shopping on a Sunday afternoon. Mommy’s boys do not have a fixed physical feature, they are not always those geeky looking guys walking around with a floral suitcase, because Mommy said it was “adorable”. Oh no, Mommy’s boys are all around us, under layers of self acclaimed machoism and high profile jobs. For instance, he comes in the form of the guy who will invite you home to his very tastefully decorated parents’ house when nobody is home. And no, he is not inviting you over for more decorating tips. He has obviously got some other plans which because you like him, you will go along with. This goes on, for months.

  Eventually, you live together, shop together, share a bed together and then one day you will send him to the airport. He tells you he is going to see his parents, just for the weekend. You ask him no questions because obviously, you trust him, but then, that slow sneaky feeling starts washing over you. There is no word from him, when you do call his mobile, he is not contactable. You have no return date. So, maybe he is not coming back at all. You make a mental note to even start checking the obituaries just in case something did happen and you were somehow left clueless about your impending loss. But no, that is not quite it. Out of the blue, after four days of no news, he calls to say he is on the late night flight home. Never mind that the flight arrives at an unearthly hour of 7:00 AM and you literally have to drag yourself out of bed and have an ongoing battle with rush hour traffic to get there, you are ecstatic to see him.

  He seems to react in the same way when he sees you as when before he left. And when you both get into bed for a much awaited snuggle, you will feel like everything is normal again, well almost. See, he will wait till after he has sex with you to break the news, “Mommy got me engaged over the weekend.” Cue, thunderstorms and lightning sound effects. See, there you will be considering the options that he is making a bad joke or that this really is the worst morning of your life but he will continue and even tell you that all he could think about during the engagement ceremonies was cue drum roll please, you. Even as you sit up in shock, he will tell you that you should not feel so affected, after all with your brain condition there never was much of a future for the two of you, that there was no way his parents could accept you when your flaws were so noticeable. They needed someone with well, less complications.

  Once this happens, it is an instinctive reaction to run back into his arms. I say, move on. As difficult as it is, do not for even a fraction of a second think that you can change his mind. If he could go through the entire weekend dancing around Mommy’s wishes and promising another girl a happily ever after, accept this one fact, it is over. You can ask yourself why, you can ask him why, but do not expect any answers, immediate or in the next century. He has clearly chosen the woman that matters most in his life, and it is not you, or his future wife, for that matter. Allow him the opportunity to be responsible for his own actions in the hope that he will one day learn, he is an individual by himself. Learn to deal with the fact that you are not a perfect person but you are a person that deserves respect and honesty. If he cannot be honest with you, guess who is going to be having a wonderful marriage?

  Of course, there is also the Mommy’s boy who lives by his lifestyle of wine, women and song. He boasts of nights filled with pleasure from one woman to another. That he is his own man making all his life decisions, no one will force him to do something he does not want to do. His wife tried to and he made life so miserable for her that she left and he has already divorced her. This is his story. Wait, till Mommy comes for a visit. He will go to the extent of throwing over whichever woman is “pleasuring” him at the moment, will threaten, bribe and coerce his co workers into making sure that they do not tell his Mommy about the divorce. Apparently, it is not really a divorce, he cannot find his “ex-wife” whom Mommy is pretty sure is still married to him. Oh, what a tangled web we weave with our stupidity. And still people keep saying I am the one with a brain condition? I know I made you laugh Dad. Talk soon and I love you.

  HAND IN MY HAND

  So, here is another person I know you would have handpicked for me, Dad. Also an unlikely friend at first, but this will change over the years. For instance, even as you feel immeasurable fear at what the doctors are about to say or do, he will sit with you and hold your hand throughout. It does seem like an easy enough task but when he spends hours and hours of his time researching information about your condition, how life can be more comfortable for you, and piecing it all together in ways even you can understand, you will see that as precious. In a time when so little information is available having it so clearly explained makes you feel a lot better. His calm reactions to the tumultuous happenings in your life may give others the impression that he does not care or is just not interested in the details. On the contrary, this will be exactly what you need to overcome your next lumbar puncture, your next blood test, your next lumbar puncture...

  He takes your hand through as many hospital sessions as he can, sitting by your side. On some occasions, he will bring his work with him and on others he will be a phone call away or your ride home from the hospital. When you have nowhere else to go because no one understands what you are going through, he will open his doors to you, minus the much unneeded drama and minus the judgement. He will listen when you are ready to talk and in the meantime, will pass time telling you about all the things you are capable of doing, brain condition or not. Ugly, bald or bruised, his only concern is that you come out of it all feeling better. No matter your failures, he will accept you as you are and you will think of all the ways
you can repay him, as unlikely as it will seem. Even as things get worse and you think he will stay away from you like everyone else is doing, that is when he will be sitting by your side.

  There will be the time when he drives for hours and hours so he can see you long enough to tell you that it is not worth giving up. Yes, there are a lot of emotional threads bound to this friendship. Maybe it comes from the decades of attachment you experienced together or maybe it comes from the many incidences you have shared in each other’s lives. Your first kiss, his major break up, your devastating downward spiral as you come to terms with a rare neurological condition or the time when he tells you, “I will be devastated if something bad happens to you”. When people look in from the outside, his is a role that seems easy enough. True, maybe it is really all that easy. Then, why aren’t more people doing it? Everybody has something to say, a weakness to point at, so much to talk about and even more to point out, as long as it is about someone else. Where is the courage in us, to have more done and less said when we always, always make it a point to do it the other way around?

  As crazy or as stubborn as you are capable of being, he will calmly explain the necessities of being rational even when it seems such a foreign concept to you. He is one of the few people who in being friends with you expects nothing in return, nothing. There is always the assurance that what is done is appreciated and will be returned in whatever means possible without the constant reminders of, “you know I did this for you” or “you remember the time when I did that for you, now you have to do this for me”. There is an even bigger sense of assurance that lies in the fact, that it is acceptable for you not to be perfect. It is not the end of the world if you have made a mistake, somehow a solution can be sorted and worked out, regardless of what people say. His capability to jump to conclusions is zero and this further solidifies your need in going to him when all the world is falling apart.

  I am thankful for such people because I have now come to understand the rarity of such relationships. Taking a person for a medical treatment once a year, is considered relatively easy depending on what is wrong, just try doing it for seven years, at least once a month. No, these are not the people with easy roles, they make it seem easy because of how they hug you and tell you, “it is all good” or how they do not flinch when they see your visibly deteriorating appearance or even their little notes of encouragement.

  Maybe it is just that they have so much compassion built inside of them. Maybe it is a state of mind they are able to bring themselves to, which only gets better over the years. Maybe it is even, their strength in drawing their own conclusions without being dinned by the background noise of what people are saying. Maybe. I would like to think it is a little bit of all this mixed with a whole lot of love and acceptance.

  THE DAY HOPE WON

  October 15, 2010

  Dear Dad. What I share with you today is nothing new, but listen anyway? There is a word tucked away in our vocabulary that has such immense power, it always surprises us. It can have world leaders on their feet for hours in a day in the sun, it can have celebrities dipping their hands in oil or pushing their way through rubble, it has normal people like you and me giving someone else a smile, even a tired one no matter how rotten our day may seem and most of all, it has the power to make the difference between giving up and moving forward. What is this word? It is called, H-O-P-E.

  I know we have talked about hope at length, sometimes in a sad reflective way and at other times in a compelling, moving forward manner. I have put together some incidences which I want to share with you. The following may be experiences that we have been very blessed and fortunate to have avoided in our lifetimes, but it does not make them any less true. Some were started with the worst of intentions in mind but in the end have brought out the best of people. There is a saying - There are three versions to every story. Mine, his and the truth. So, while I will not debate the politics of each incident in length, let’s take it for the moment we will remember them for, when hope won.

  Marching For Peace. In the heat of all that the Irish Republican Army did, one incident stands out even more than the rest. On 10th August 1976, an Irish Republican Army (IRA) getaway car was desperate to escape a British Army patrol car who was even more adamant that the IRA car will not succeed in making its getaway. The Maguire children, Joanne, nine, John, three, and Andrew of six weeks died as a result of this exchange. Their mother, Anne Maguire would never be able to overcome this horror and would later commit suicide.

  Her sister, Mairead Maguire, alongside Betty Williams who witnessed the incident, responded to this violent act by organizing a peace march attended by ten thousand Protestant and Catholic women to the graves of the Maguire children. Members of the IRA disrupted the march and hurled insults at the participants accusing them of being influenced by the British.

  They retaliated by organizing another peace march the following week. This time, thirty-five thousand people marched with Mairead Maguire and Betty Williams demanding that violence be stopped at all costs in their country. This peace march would in turn be the spark for many other peace demonstrations and would also function as the turning point for both women being awarded the Nobel Peace Prize in 1976.

  Men Do Not Think. Apparently, that is exactly what Adolf Hitler was counting on as he set about his campaign of hate and said openly, “How fortunate for leaders that men do not think”. In sparking a war that killed approximately seventy million people, Hitler has a strong foothold in the memories of many, as the most hated man in the world. He used his ‘leadership’ to carry out crimes as heinous as starving people to death, using human skin to make lamp shades and making people feel that death of any kind, would be a better option than to be alive within his reach.

  As troops fought hard to stay alive and win a war that so few saw any point in, there was a moment in time when all appeared to be lost. The German army had cut off troop movement towards France. Winston Churchill regarded this as one of the greatest military defeats of the time. With very little maneuvering space available, between 26th May and 4th June 1940, Operation Dynamo fell into place. More than 338,000 British and French soldiers, who were trapped on the beaches at Dunkirk, France would need to be rescued. While the army went all out to do their part, it was the seven hundred private boats that sailed from Ramsgate in England to Dunkirk that created a sensation. They sailed back and forth, scooping up the wounded, dodging air bombs and braving night sails. The event would later be referred to as, “The Little Ships Of Dunkirk” but carried with it the very emblem of war, leave no man behind.

  The much sought after surrender of Germany and the beginning of the end of World War II came from the surrender of Germany’s Axis powers on 7th May 1945 to Western Allies and the Soviet Union on 8th May 1945 about a week after Adolf Hitler committed suicide. In Asia, Japan managed to hold ground for a few more months resulting in yet another one of the deadliest events when nuclear bombs were ordered to be dropped on Hiroshima 6th August 1945 and Nagasaki 9th August 1945. On 2nd September 1945, General Yoshijiro Umezu signed surrender documents aboard the battleship USS Missouri in Tokyo Bay. World War II was officially declared over by President Truman on 31st December 1946.

  The Wall That Came Tumbling Down. On the evening of 8th November 1989, after a much anticipated international press conference, an announcement on television was made that the East Germans would be allowed to travel abroad freely. No date was given as to when this would come into effect but this served as enough confirmation that unification was much closer than ever before.

  For twenty-eight years, the Berlin Wall had become an international symbol not only of a divided country but one of divided families, as well. Having stemmed from the defeat of the Nazis in World War II, the Soviet control of East Berlin blocking out the West and the fleeing of approximately three million East Germans to the West in 1953, the Berlin Wall was built on a sentiment that can be likened to “this is mine, and no one else can have it”.

/>   Through the night of 8th November 1989, as continual throngs of people gathered at Unter den Linden in East Berlin, guards were at a loss of how to react. People were demanding that it had become their ‘right’ to go into West Berlin. Guards attempted crowd control with little rubber stamps on passports but soon gave up as the crowds intensified. As the crowd broke free, so did the wall’s foundations. The Berlin Wall came tumbling down on the midnight of 9th November 1989, although it was officially demolished on 13th June 1990.

  I Have A Dream. On 28th August 1963, on the steps of the Lincoln Memorial in Washington DC, Martin Luther King Jr. said, “I am happy to join you today in what will go down in history as the greatest demonstration for freedom in the history of our Nation”. This would be the beginning of his renowned speech, “I Have A Dream”. One of the most compelling statements in this speech is the line, “We cannot be satisfied as long as a colored person in Mississippi cannot vote and a colored person in New York believes he has nothing for which to vote”.

  This dream, one he would never live to see, came to pass on 20th January 2009 when Barack Obama was sworn in as the 44th president of the United States. The first African-American to be in such a position. What’s the big deal? In a society that is now so culturally mixed, so culturally coloured and flourishes with diversity Barack Obama may have seemed to some as just another presidential candidate who had the right components to win his seat at the White House.