The face of true warriors in life

-My thoughts on attending the Mandarin SLE support forum

(中文版在英文段落后)

People said that true heroes live amongst us.

I had the honour to witness the face of the true warriors in life this very day.

Last year, when I was first diagnosed with SLE, I read the SLE Association’s newsletter, and I felt a sense of animosity. I felt that reading other people’s pain did not make myself feel better. It just made me feel that it is possible that my sickness could worsen, just like these people. I also wondered, what if my sickness worsen, and I did not have the luck that these people had? What would happen to me then? I just wanted to tell myself: no you are not the same, you are not a patient. Well maybe I am, but I am still not the same as them. I did not understand my mentality back then, but today, after I attended this forum, I have found the answer to my question.

It was the doubt that I had on myself back then. I did not believe that I could emulate these warriors whom despite the adversity, survived and continued to thrive on. I did not believe that I could recover from my sickness, and that I could go back to my normal life. I did not have faith that I will be ‘normal’ again, that I could continue with my demanding job and physical activities such as rock climbing.

During the forum, I heard sharing from a number of daily heroes. A girl had to abort her unborn baby at 4 months pregnancy because she was diagnosed with lupus nephritis acute kidney injury.  She had to go through two weeks of dialysis when her kidney stopped functioning. When she told us her story, I could see the moment when she recalled her memory and her eyes turned slightly red. Also there is a teenage girl who experienced seizure, unconsciousness and loss of memory when lupus attacked her out of a sudden. There was a patient who has experienced epilepsy twice, made a great come back and has continued with her day job now. There was also a 12 years old little girl who has gotten lupus nephritis 3 years ago, when she was 9 years old. I could not forget her innocent eyes when she told us that she has been taking prednisolone and MMF, and upon us probing, said that she did not feel any pain or stress now. I marvelled at how she did not feel that she was a patient. But then again, neither does anyone in the sharing group believed that they are so critically ill that they are ‘different’ from the others. We have all been through this before, and we are all survivors. We managed to live to tell the tale.

I believe that every newly diagnosed lupus patient should be in the sharing so that they could be reassured that this is just a temporary setback. As long as you pulled it through, life would be much better, even better than before lupus. At least for me, I felt that lupus taught me different priorities in life, and during my sickness, I spent more time with those who matters, and learnt how to face adversity in life. I could say that lupus has made me much stronger, and see life in a different light.

Here’s a song I used to felt cliché, but now could accurately describe all of us – Mariah Carey’s Hero. Just remember everything will be alright again, just hang in there, and you will come out alright, just like you never had lupus before. Hang in there my fellow fighters!

There’s a hero
If you look inside your heart
You don’t have to be proud
Of what you are
There’s an answer
If you reach into your soul
And the sorrow that you know
Will melt away

And then a hero comes along
With the strength to carry on
And you cast your fears aside
And you know you can survive
So when you feel like hope is gone
Look inside you and be strong
And you’ll finally see the truth
That a hero lies in you

-Mariah Carey

 

人群中的真英雄– 参加SLE中文论坛的感想

有人说,英雄就在人群中。

今天我有幸参与SLE协会举办的对话,见到生活中面对逆境,却能够勇敢坚持下去的勇士。

去年当我刚开始被诊断是肾炎四期时,为寻求慰藉,我找了SLE协会的月刊来看。看了别人的经历后我心里一直觉得很不以为然。我觉得自己和他们不一样。怎么不一样我也说不出来。看了后我心想原来狼疮可以有这么多并发症,谁知道我的病情会不会恶化,而我又会不会那么幸运能走得过来?我一直告诉自己,我跟他们不一样,我不是一个病人。我不明白当时我为什么会有那样的想法。 可是今天我在这次对话中明白了问题所在。

原因是我当时对自己能否康复持有怀疑。我没自信自己能够像月刊里的勇士排除万难,熬过最困难的时期,最后还能写文章鼓励病友。我没自信自己的病情能够完全康复。我觉得自己永远都不能再像生病前的我,继续干我那份压力大的工作,继续攀岩。

在这次的对话中,我听到了几位病友的分享,有了不一样的领悟。有位女生因为狼疮肾炎四期,急性肾损伤,不得不把四个月大的胎儿拿掉。由于肾脏停止运作,她进行洗肾两个星期,几乎要放弃了。当她告诉我们她的故事时,我相信那段回忆令她的眼眶泛红。有个年轻女孩遭到狼疮袭击,癫痫发作,失去意识和暂时性失忆。有位病友经历两次癫痫,现在已经可以继续工作,并且过着普通的生活。最后,有一名小女孩今年十二岁,三年前得到狼疮肾炎。当她告诉我们她在使用类固醇和MMF时,她的眼神非常天真,当我们问她有没有感觉痛楚或者压力,她摇头说没有。我对她完全不觉得自己是一名病人感到钦佩。但说实在的,分享交流会中也没有病友觉得自己比其他人都严重,自己是‘不同’的。我们都经历过同样的过程,从了解,无法置信,到最后接受自己的病情并且集中治疗。现在我们都能够健康地把自己的经历告诉大家。

我相信每个被新诊断的病人都应该来参与这种分享会,因为他们会明白这只是一个暂时的挫折。只要你能够熬过去,生活会变好,甚至好过得到狼疮之前。我觉得狼疮告诉我人生中什么才是最重要的,在我生病时花较多时间与重要的人相处,还有学习如何面对逆境。狼疮让我变得更加坚强,和能够用不同的角度看待事情。有很多事情未必是需要与它硬碰硬,有时换个方式去做,也可以达到同样或者更好的效果。

这是我曾经感受到陈词滥调的歌曲 – Hero by Mariah Carey ,但现在我可以说它的歌词准确描述我们所有人。只要记住,一切都会好起来的,只要坚持下去,最坏的都会过去,你肯定可以过没狼疮之前一样的生活。继续坚持下去吧我的战士朋友门!

There’s a hero
If you look inside your heart
You don’t have to be proud
Of what you are
There’s an answer
If you reach into your soul
And the sorrow that you know
Will melt away

And then a hero comes along
With the strength to carry on
And you cast your fears aside
And you know you can survive
So when you feel like hope is gone
Look inside you and be strong
And you’ll finally see the truth
That a hero lies in you

-Mariah Carey

 

Author: Li

The journey with my friend - Lupus, 500 days and counting after I was diagnosed. I like writing, climbing, reading just about anything, watching inspirational movies and movies with a twist, and striving to reach financial independence as soon as possible.

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