I read a post about mesothelioma and I wanted to share it with everyone. This is a post about Heather’s experience with mesothelioma.
I spend a lot of time thinking. I think about my past, present, and my future. Most of the time, I dwell on the fear of not being a good enough care taker for my daughter who has cerebral palsy. I know for a fact that I will never be able to make her life any more comfortable because I have done everything in my power to try to make her as comfortable as possible, considering her condition. I make her happy by giving her the best gift I can, love.
I guess, as any parent does, I tend to blame myself for her condition. I think back on the things I could’ve done to avoid what happened to her. Which in retrospect is basically impossible. There is nothing that I could’ve done to change her condition. Nonetheless, that doesn’t change my constant feeling of guilt.
These feelings consume a major part of my life. There are so many things I wish I could change to accommodate her needs. Things I have no control over. When these thoughts get the better of me, I pray and ask Allah (God) for guidance, because I know deep down that I have this responsibility for a reason. I also know that Allah has a plan for me. Someone once told me “God only bestows the greatest responsibilities upon the strongest of his worshippers”.
So whenever I’m feeling bad about my situation I know that at the end of the day, I have done everything there is possible to make my child happy. Which is basically the most important gift you can give to your loved ones. I am not here to find a cure for her sickness. Nor am I here to change her condition. I am here to love and support her and make her as happy as I can. Knowing that helps me wake up every morning with the strength to keep doing what I’m doing for her.
The WordPress.com stats helper monkeys prepared a 2013 annual report for this blog.
Here’s an excerpt:
A New York City subway train holds 1,200 people. This blog was viewed about 5,600 times in 2013. If it were a NYC subway train, it would take about 5 trips to carry that many people.
Do you ever stop to think about the things in life that make us happy. Are the tangible and materialistic aspects of life more important to us or are the psychological and more sentimental things what we appreciate more .
First of all, being happy and content all the time is somewhat unachievable if you ask me. Not trying to be pessimistic here, but seriously, there is no such thing. That is why we struggle throughout our lives. That is what makes life worth living, the struggle.
Secondly, depending on who you speak to, every individual has a different perspective on how to achieve happiness and whether it comes from a materialistic or psychological point of view.
One thing for sure is, every time we reach a certain goal, we are never content. There is always something missing. This is definitely the case when it comes to materialistic achievements. There will always be space for more. We are humans, right? It is in our nature.
On the other hand, sentimental goals seem a bit more simple. After all, all we want in life is love. To be loved by our families, our spouses, our children and our friends. That doesn’t seem like much to ask for, does it? What is so hard about loving the people you care about.
The problem is, even though love seems like such an easy achievement, conflict is what complicates it. Conflict is always there lurking, finding a way into our lives, building walls between us and our loved ones. Which means that achieving loving relationships is not necessarily the ultimate goal here. Maintaining those relationships is what is required for us to achieve the ” perfect and happy life”, I’m playing along here.
So in the end, whether our goal is materialistic or sentimental, there is always something keeping us from achieving total happiness. This is the way of life. What is the solution? You just need to understand how to live accordingly with what you have. All our obstacles come from our psyche. This does not mean that it is simple to program our minds into believing that we can overcome every negative aspect that we come by. It simply means that we need to be patient and humble in our quest for a simpler, less complicated life.
One does not need to achieve every possible aspect in life that they believe will make them happier, but instead should love and appreciate what he/she already has. Always putting into perspective those who are less privileged will also help you appreciate what you have.
One more very crucial fact is that you will need to open your mind and accept that not everyone is open to simplicity and humility. In this day and age, most people seem to believe that these characteristics are only for those who are week, which is definitely not the case.
The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.
Here’s an excerpt:
600 people reached the top of Mt. Everest in 2012. This blog got about 12,000 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 20 years to get that many views.
Writing is a very powerful tool. It has the power to either unite or separate societies. It has the ability to enlighten us about things we never knew existed. It tells us how people from the opposite side of the world live, worship and communicate. It shares the history of humanity from different eras, countries, religions, and cultures throughout the globe.
Writing that forces people to think and within those thoughts, creates doubt in their minds about their most significant beliefs and opinions is definitely the most compelling and stimulating kind of writing. It expresses the author’s mesmerizing ability to influence us in a very intriguing manner.
Alongside writing comes the acknowledgement of criticism, because depending on what you write, there will most likely be an opposing side of critics, simply because not everyone will agree with what is written. But isn’t that the beauty of writing, telling your story without having to care about the critics? Isn’t that basically why people write, if not to influence others, it’s to understand how their writing affects them?
I’ve always appreciated the art of writing. For as long as I can remember, my favorite past-time has been reading. I don’t think there has been a time when I was ever bored of anything I’ve read. Regardless of what type of reading materiel it was, I always seemed satisfied. I always felt a hunger for reading which never seems to be fulfilled, not for the lack of good material, but because I never get enough. So throughout my everlasting love of reading, I acknowledged that writing has also become another favorite pastime.
Now that I’ve shared my opinions on writing, let me get to my point. Although I love to write, sometimes I fear that I don’t have the ability to express myself in a more sophisticated manner. In ways that most writers captivate their readers and force them to feel every emotion they experience simply by reading their exquisitely written stories.
So how does one tell their life story without having to fear judgment? And if so, is the story worthy of being written. For a very long time now, I have been going back and forth with the idea of doing just that, writing a memoir, but for some unidentified reason, I always seem to put it on the back burner.
I guess one of the reasons for my hesitation is because my history is somewhat complicated. Although I’ve learned to accept and appreciate everything in my life, not everyone will understand my reasons for writing about it, especially my family. One thing I’ve realized about writing a memoir is that family and friends are always affected by it one way or the other. Not everyone wants the world to share their lives with them, so I have to put that into consideration.
So for now I’m going to stick with writing about everything and anything other than my life. Who knows, maybe one day I will reconsider my options.
The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.
Here’s an excerpt:
A New York City subway train holds 1,200 people. This blog was viewed about 7,700 times in 2011. If it were a NYC subway train, it would take about 6 trips to carry that many people.
The past few days, I’ve been feeling very downbeat. Everything from coming to terms with my inability to provide basically the most crucial equipment needed for Bilquis (my daughter), the fact that my husband does not comprehend the concept of helping out with things like bringing groceries, paying the bills, running errands and maybe even giving me a break sometimes from cooking, cleaning, and helping our son with his homework, or my 27 year old son who seems to believe that having a child every year is the next best thing to becoming the leader of your own tribe, although he constantly complains about the lack of income because of course, the bank of Motherhood is always open. Yes, I agree, very sad.
To be honest, these are things that I’ve already gotten used to. What really triggered my aggravation, was the flu, yes the flu. I have been sick for the past few days and It is literally painful everywhere. You would think that I should at least be entitled to a few days of rest, but no, there is no rest for me. Throughout sleepless nights filled with dry coughs, body aches, and major headaches, my husband felt that ordering out was out of the question, because of course “only irresponsible housewives ask for these kinds of things” according to him. Yes you read correctly. Let’s just leave it at that, no use trying to fix the unfixable.
So now that recovery is around the corner, I couldn’t help but remember my dear grandmother (Allah yer7amha). She was my inspiration, role model, and the most influential person in my life. I even wrote an essay about her a few years ago titled (The most influential person in my life), which starts like this:
“It’s okay sweetheart, don’t be upset with your mother. She really means well, she just doesn’t know that there are ways to get a point across without yelling,” my grandmother ( Allah yer7amha) would tell me with a peaceful look on her face which never failed to heal my suffering. She always knew how to make me feel better. I knew from the first day I spent with my grandmother when we reunited after 9 years of separation that she was my role model and a tremendously needed inspiration in my life. My grandmother taught me perseverance, compassion, patience, and wisdom. I can honestly say that I’ve become who I am today mostly because of her influence.
After spending nine years in America, my father had decided to go back Yemen to visit his family. The visit turned out to be longer than planned, so we ended up spending eleven long and dreadful years there. The only two things that I appreciated from my stay there were my gained knowledge of Islam and my grandmother’s teachings that I cherish forever.
After our arrival in Yemen, we stayed in the capitol Sana’a for a few weeks. After that we headed to a small village about five hours away from the city to meet my father’s relatives. It felt like we were time traveling into the past. As I sat in the back seat watching the scenery, it seemed like I was in a faraway land that existed a few centuries ago. Everything around me was ancient. There were no signs of modern technology anywhere other than the few older model cars that we saw in the city.
Throughout our journey, we saw huge mountains and hillsides decorated with large houses of rock and clay, and long narrow valleys with combinations of trees, shrubs, tall grasses, and endless fields of corn, wheat, rye, and other crops. There were cattle, sheep, goats, and donkeys everywhere. The most distinctive memory that stuck with me was the smell of fresh air mixed with an array of different aromas that only God can manufacture. The beauty of it all was captivating. It felt like a magical wand pulling us into a mystic world of nature at its best.
The magic and beauty of our journey faded when we finally arrived in the village. For the first time since our arrival, I felt uneasy. There were many strange faces that stared at us with disbelief, as if they saw something from a different world. But there was one face that was different, my grandmother’s face. I was only four years old when I left Yemen as a child to come to America but I still had memories of my grandmother. It almost seemed like she had a special glow that separated her from everyone else. As soon as my grandmother took me into her arms and started kissing me, I felt like I was home again. Her unique scent sunk into my soul and will always be a part of me forever.
I was going through a lot of frustration after we arrived in Yemen. I felt like I was in a strange place, as if my whole world was turned upside down. Having been raised in America, I did not know very much about my own culture, religion, customs, or traditions. I seriously needed someone to guide me through the new discoveries that I was facing. Not being able to properly speak the Arabic language made it difficult for me to communicate with others. I never felt that I could go to my mother for answers about this new culture and environment. It was obvious that she had her own troubles to deal with at the time. As for my grandmother, she always seemed to know what I needed, almost like she could read my mind.
My grandmother was never judgmental nor sarcastic like the rest of my relatives. Whether it was how I dressed, or how I couldn’t respond to their inquiries in the Arabic language, or the fact that I didn’t know anything about my culture, everyone had something to comment about. They always made me feel ashamed of who I was.
I had to learn how to cook on an oven made of clay and the only fuel was dry wood. What usually takes an hour to cook in a modern oven would take me two to three hours to cook in the clay oven. But I had nothing to fear because my grandmother was always beside me teaching me everything I needed to know. Every time I started to cough and get teary eyed from the smoke and fumes coming from the fire in the oven, my grandmother would tell me to stand outside of the dark kitchen until I felt better, but I would choose not to. I told her, “As long as you are with me, I can deal with it Grandma.”
My grandmother would constantly try to comfort me by explaining why my mother wasn‘t the one teaching me how to adapt to my new life. She told me that my mother was spoiled as a child because she was her only daughter. The fact that my grandfather, my mother’s father was a “sheikh”, an important public figure, gave my mother a sense of “arrogance”, was what my grandmother would call it. When I remember the past, I kind of understood why my mother acted the way she did because I read once that a person’s upbringing has a major influence on their personality. I guess in a way she felt entitled to having everyone take care of her.
My grandmother’s presence made coping with the new environment easier for me. She taught me everything from how to cook, chop wood, bring home water on my head from a well that was almost a mile away, feed the chickens, feed the cows and milk them, and work in the fields. She taught me the importance of perseverance because she knew that I constantly felt like someone who was swimming against the tide. She would always say to me in Arabic, “What doesn’t kill you makes you stronger.” She said that ever since I was a child, she always had a feeling that I would have strong characteristics.
I never in my wildest dreams imagined that I would one day live in a remote village, where there were no televisions, ovens, refrigerators, microwaves, vacuums, absolutely nothing that had the simplest implications of technology. I felt like I was a character in a story about an ancient land, one of those books I used to enjoy reading as I sat in my room back in Detroit. Although it took me a while to adjust to life in the village, with my grandmother’s guidance I succeeded. After almost a year of training, I was a typical village girl. I achieved all the skills that the other village girls possessed, which made my grandmother very proud.
That experience in addition to my grandmother’s influence has helped me to stay strong, compassionate, and perseverant. Once I realized that not everyone is privileged to the life we have in America, I also learned to be more appreciative to what I have and to never take anything for granted. Every time there are insignificant things in my life that bother me, I always remember my experience in Yemen; a great way to keep myself humble.
For the past few months I’ve been “adjusting”, for the lack of a better word, to my daughter, Biquis’s, new medical condition. I don’t know what’s worst, the fact that I’ve been feeling depressed lately or that I simply don’t know how to deal with the situation in hand. The main reason I was feeling depressed was because I felt like I was failing my responsibility as a mother, which is the worst feeling any mother can experience. It felt as if I was spiraling down into a dark hole.
I’ve been searching the web for support groups for parents with children who have disabilities; there are many, but this post (supermom myth), at one of the websites really hit home. It talks about how moms with disabled children can stop competing with other moms because we simply are different. After reading the article, I felt reassured that it is okay not to always have everything done on time, or be tired during the day or to simply experience the overwhelming feeling of frustration. All this time, the one thing I needed was to know that I don’t have to be a “supermom” and just do the best I can; even if that means I can’t do it all. There are days that I am too exhausted to do anything other than care for Bilquis because I’m up most of the night when she needs me ever few hours to turn her in bed.
Another issue is providing her with an environment that will make it easier for the both of us to adjust to our new situation. A wheelchair Van, ramp, walk-in shower, and an adjustable bed are some of the equipment that would make her life easier. I’ve been also told that I should get a nurse to help take care of her, but for some reason, the idea doesn’t seem to register with me. I don’t know why it is so hard for me to allow a total stranger, even if that stranger is a certified nurse, to help me care for her. It’s going to take a while to provide all the necessary equipment but I’m taking it one step at a time. Although this issue has yet to be conquered, hopefully everything will work out for the best.
At least there has been some progress. After I was told that her insurance didn’t cover in-home physical therapy, I started calling the insurance company for answers. At first I was told that it actually didn’t cover so I decided to change her insurance. Once I told them I was changing her insurance, they said that they do cover in-home therapy; they just needed authorization from her doctor. My question is, “why was it so hard for them to clarify that the first time we tried to get her care?” She lost 7 whole months of therapy due to their incompetent employees who failed to explain that in the beginning.
I’m feeling so much better now that I’m on the right track.