Thursday, November 14, 2013

After 5 years of SLE - in conjuction with Until I Say Good-Bye by Susan Spencer

It’s been months since I bought this book: ‘Until I Say Good-Bye – My Year of Living with Joy,’ by Susan Spencer – Wendel with Bret Witter - but only recently I had time to read it. You could find this book under the self-improvement or inspirational story inside the book store.

One of Susan Spencer favorite quote - soon become mine too :)

In June 2011, Susan Spencer-Wendel learned she had amyotrophic lateral sclerosis (ALS)—Lou Gehrig’s disease, an irreversible condition that systematically destroys the nerves that power the muscles. While Susan cannot stop the rapid decline of her body and her inevitable death, she refuses to give up on life. A woman of immense strength and indomitable spirit, the forty-five-year-old mother of three has made every day count.

After her diagnosis, Susan began taking special trips: to the Yukon, to see the Northern Lights with her best friend; to Budapest, where she and her husband spent the first two years of their marriage; to Northern California, to meet her birth mother; to Cyprus, the home country of the deceased birth father she never met. But one of her most important adventures was a visit to New York City and Kleinfeld’s Bridal, where she and her fourteen-year-old daughter, Marina—fans of TLC’s Say Yes to the Dress—shared an unforgettably moving experience: shopping for the perfect dress for a wedding Susan will not see.

Now, in this unforgettable memoir, she invites readers on her transformational journey, sharing the gratitude and wisdom that guide her. “I am writing about accepting, about living with joy and dying with joy and laughing a helluva lot in the process.” Until I Say Good-Bye is the fulfillment of her final wish: “To make people laugh and cry and hug their children and joke with their friends and dwell in how wonderful it is to be alive.”

Her story is kind of similar with what I have encountered, only that I am much luckier, well, I am not sure if I am much luckier than her now because I can’t find any reason that supporting my statement. The difference is her deteriorating condition is more visible and faster, and it destroys her nerves slowly day by day. While with SLE, you will never know when it comes and attacks you. Read one of the case that happened to one of my Aunt’s niece here. It can just come as and when it wants to come, like a surprise, some sort of cruel karmic retribution I guess hehe…

While reading her book, I can understand her feeling. There was a rejection when she first found out and she tried to ignore it by not visiting the doctor for 2 years until the other symptom came out. I was quite lucky though to find about my sickness early, therefore I could receive early treatment and not to make it worse. There was also strength on me to accept it because I believed that as human being, we couldn’t run ourselves from the four-cycle of human being – to born, sick, old, and die. Eventually those who were born will die one day.  It’s just how we die that making it different.  I was even grateful to find it out early as I would have known earlier on what I really wanted to do in my life.

In one month’s time it will be five years since I was diagnosed with SLE and here is what I wrote in my blog at that point of time: “What I want is a reasonable time in life that is filled with many meaningful events, do things that what I want and like to do, and most importantly, although separated, I would still be closed and in touch w/ my family, especially my parents, brother and sisters, not forgetting my hubby and son.”

Looking back at five years ago, I am wondering if I’ve lived my life according to what I wished and dreamed for. In fact, I felt like I was being re-born and to live again. ‘Always look on the bright side of life’, ‘be positive’, ‘only remember all the good things and experience’, ‘to love and be loved’, ‘get closer with natures’, ‘traveling to many places I’d never been to’, ‘treasure friendships’, ‘do what I love to do like reading, blogging, sharing positivity with others, encouraging and supporting others in my own way’, ‘keep smiling and make others happy’, and many more. That’s what shaping me of who I am today.

I am not perfect though. I have made mistakes in life too, again and again. I am not a good mother, often made my son angry and irritated when I kept asking him to study and not letting him to play his games on Ipad or computer. I didn’t teach him much on his study as I preferred him to learn his own way as one day when he grows up, he has to depend to no one but himself. I didn’t read him story at night and preferred him to read on his own before sleeping as to let him read more books, to learn more words and grammar and to have the reading habit since young. I let him traveling without us, parents, by his side as I wanted him to grow independently and non-attach to thing as nothing is permanent in this world. Sorry Baobei if you think that your life is miserable because of me, but like what other parents do, they do this for your own good.

I am not a good wife either. I often traveled alone for days or even weeks and left my hubby enjoying his life at home with the rest of the family members. I don’t cook often, only when I have mood. I don’t do housework regularly as I often love to have my own ‘me’ time by reading and writing in my room. I often trouble him with lots of things that I wanted too such as installing cable extension inside our toilet so I could listen to the radio whenever I was there,  driving me to our old neighborhood's market so I could eat my favorite breakfast, buying and installing front side of bicycle's light so I was able to cycle safely at night time, pumping the air of my bicycle's tyres to ensure I had a safe cycling journey at all times, and many more.

I am not a good child too. I don’t call home regularly to ask how my parents doing, how their health is. I don’t cook for them as I am not good at cooking so most of the time when they come to Singapore, we will usually eat outside. I don’t give them money to repay back what they have given to me all this while and even until now they still buy or pay me this and that. Maybe they often feel disappointed with me with thing that I wasn’t aware of.

As for the rest of the siblings, I am not your good sister too sometimes but I tried and did my best to spend time together whenever you all came here. I often travel but I don’t buy many things for you as I have restricted budget and too much desire to visit more places in the world. I call you very seldom and chat only when I’m free but doesn’t mean I didn’t read what you all wrote in the chatting conversation.

For all my friends, we may meet less due to our hectic schedules. We contact through chat sometimes only since lots of us live in different countries.

Whatever it is, I just want you all to know, I love all of you and each of you is always in my heart, deeply and sincerely. I remember all of your kindness and love given to me, for the friendship you all share with me and I’m very grateful to have and know you in my life. I have you in my prayers too that all of you are blessed with good health,  wealth,  luck,  and live full of success,  joy,  and happiness :)

Reasonable time seems like so much time for me. I thought within five years time there should be something bad happened to me, which wasn’t. Thank Buddha that so far my regular check-up has shown me good results with nothing to worry about. I even feel that I live a life just like a normal person, or sometimes I even feel that I’m much healthier than the rest who don’t suffer from SLE.

No matter what, I can’t take it for granted. We will never know how much longer I can live in this world. So I will still stick to my wish that I made five years ago, and keep doing what I do as to benefit more people out there and to bring happiness upon other people’s lives. Hope I can do it! Jia you!!!

No comments:

Post a Comment