歪果仁系列狼疮故事：如何做到养孩子与养狼两不误？

Heide Wilson

海德威尔逊

翻译：Sashatimaru

Heide Wilson

Heide Wilson

“我想为疗愈世界做点什么。”
在基金会，我们认识的海德，口齿伶俐，踏实可靠，并且充满激情地与狼疮战斗。
但也许最好的词来形容她是富有活力的。
她不仅要处理自己与狼疮的战役，还得承受失去她33岁的弟弟的痛苦。现在的她甚至有一个更强大的决心去帮助他人，让他们知道，他们并不孤单。
在每月基金会的支持团体会上，海德一直告诉伙伴们，“保持坚强。你能行的。”
身为前空军技术军士，以及布鲁克林两个孩子的母亲，海德似乎把一切都管理得如此之好，她是怎么做到的呢？

“I want to contribute to the healing of the world.”

At the Foundation, we know Heide as articulate, dependable, and passionate about fighting lupus.

But perhaps the best word to describe her is resilient.

She’s not only dealt with her own battles with lupus, but lost her 33-year-old brother to the disease. Now she has an even stronger determination to reach out to others, and let them know they aren’t alone.

At monthly Foundation support groups, Heide is the one who consistently tells others, “Stay strong. You can do it.”

How does this former Air Force Technical Sergeant and Brooklyn mother of two seem to manage so well?

在你青少年时期，还在长岛（美国纽约州东南部岛屿）的时候就有了红斑狼疮。是什么时候确诊的？现在怎么样了？

You’ve had lupus symptoms since you were a teenager on Long Island. When were you diagnosed, and how are you doing now?

十几岁的时候，我就时常感到疲劳，关节疼痛。第一次被诊断为红斑狼疮/结缔组织病是在1982年，当时正在空军服役。根本没有把他当回事。

直到26岁那年，感觉像心脏病发作-实际上那是一次恐慌的袭击- 在布鲁克林市中心的地铁站我被正式确诊为红斑狼疮。确诊后几年里，浮肿，关节发烫，极度疲劳，掉发。医生把这些都归咎于压力，药物过敏反映，以及离婚带来的痛楚。我告诉急诊室医生我的手很痛，走路甚至移动的时候都会疼痛不已。他给我做了一些检查，抽了血，开了一些非甾体抗炎药，并且嘱咐一周后复查。一周后，被确诊了狼疮。

这些年，我感觉不错。虽然仍然有关节痛，很容易疲劳，但是我已经学会了调整自己，并且能够分辨狼疮是否试图爆发。

In my teens I had bouts with fatigue and sore joints. When I was first diagnosed with a lupus/collagen vascular disease in 1982, I was on active duty in the Air Force. But I never followed up.

It wasn’t until I had what felt like a heart attack at age 26—it was actually a panic attack—in a subway station in downtown Brooklyn that lupus was officially diagnosed. I’d had a few years of swollen, hot-to-the-touch joints, extreme fatigue, and hair loss. The doctors attributed these difficulties to everything from stress to allergic reactions, and the difficulties of going through a divorce.

I showed the emergency room doctor my hands, which hurt terribly, and told him how much it hurt to walk or even move. He examined me, took some blood, prescribed some non-steroidal anti-inflammatory drugs, and told me to come back in a week. When I did, he confirmed lupus.

These days, I feel OK. I still have joint pain and I get fatigued easily. But I have learned to pace myself and I can tell if my lupus is trying to flare up.

你经历了如此多的艰辛，但似乎依然保持坚强。是什么让你坚持下来？你又是怎么做到保持乐观的呢？

You’ve had so many hard knocks yet seem to stay so strong. What keeps you going? How do you manage to stay positive?

我相信，基本上我们每个人都得承受来自于上帝的“十字架”; 我的十字架就是狼疮。我并不是说教科书的教育意义需要打折扣，而是只有当你走过一个街区（或是你尽可能走远的路上）重蹈狼疮患者走过的路，才能理解这种疼痛，精疲力尽，沮丧以及狼疮其他的并发症。我相信上帝让我们去经历这些，是让我们可以以实际经验给予他人帮助而不是以教科书的方式。

I basically believe God gives each one of us “crosses” to bear; my cross is lupus. I’m not discounting education, but until you walk a block (or as far as you can walk) in the steps of someone who has lupus, it is very hard to understand the pain, fatigue, depression and other symptoms of the disease. I believe God allows us to go through these experiences so that we can help others in our situation in a real—not a textbook—way.

我也经常看书，阅读关于他人怎么克服慢性病障碍的文章，比如Strong at the Broken Places: Voices of Illness, Chorus of Hope, 作者 Richard Cohen (Harper Collins, 2008).

我的狗，Deuce，也给了我极大的鼓舞。他是阿拉斯加雪橇犬，我从动物避难所把他救回来的。

I am also constantly reading books and articles about how others have overcome the obstacles of a chronic disease, such as Strong at the Broken Places: Voices of Illness, Chorus of Hope, by Richard Cohen (Harper Collins, 2008).

My dog, Deuce, is also a great source of inspiration. He’s an Alaskan Husky that I rescued from the animal shelter.

养育孩子不容易，你又是怎么做到养孩子和战狼两不误呢？

确实不容易！举全村之力。在头6年里，我和我的外祖母，叔叔一起住在新泽西。他们帮了我很多，我仅仅只要用自己仅有的力量去拥抱孩子们，一个女孩一个男孩。他们现在都20几岁了。

放暑假和春假的时候，孩子们也会去我布鲁克林的父母家，南卡罗来纳州的爷爷奶奶家。无论在哪里，他们都很自在，有很多衣服和玩具。我们感觉自己就像吉普赛人！

很小的时候孩子们就知道如何拨打911呼叫救护车，他们也知道随后给我的父母打电话求救，告诉他们发生的事情。

我的教会家人也非常支持我和帮助我管理我的孩子。

总而言之，我也因为没能陪儿子参加足球赛，去沙滩或者游乐园而感到愧疚。但专业咨询帮助了我处理那些愧疚情绪。

Raising kids is so much work. How did you manage with lupus at the same time?

It takes a village! For the first six years I lived with my grandmother and uncle in New Jersey who did everything so that I could spend what energy I did have in just hugging my kids, a girl and a boy now in their 20s.

From there to my parent’s home in Brooklyn, and my South Carolina in-laws in the summers and on school breaks, the kids were very comfortable wherever they were, and had clothes and toys. We felt like gypsies!

At a very young age the kids also knew how to call 911 to get an ambulance to the house. Then they would call my parents and tell them what was going on.

My church family was also very supportive and helped me manage my children and my situation.

All told, I did not manage raising kids without building a lot of guilt for not being able to do things like stay for my son’s football games or go to the beach or amusement parks. Professional counseling helped me to deal with these feelings.

当你离婚的时候，是怎样强迫自己保持乐观的？

When you do get discouraged, what do you think about to stay focused on the positive?

我通过帮助他人使自己忙碌，比如在教会帮忙分发食物，或者到户外冥想。参加支持团体，狼疮研讨会也是我保持乐观的途径。

我的孩子们是我快乐的来源，保持乐观的理由。我不想让我的消极情绪影响到他们，影响到我周围的人们。
I try to get busy helping others, like helping to distribute food at church, or just being outdoors and meditating. Going to the support group and attending lupus seminars are also means of staying focused on the positive.

And my children are a big source of my joy and reason to stay positive. I do not want to have my negative attitudes affect them and other people around me.

你参加了2008年12月份的临床实验，是怎么一回事？

2008年住院出院后，我非常沮丧，因为这些药物（甲氨蝶呤、羟氯喹、泼尼松）对我都不起作用。每位进来看我的医生都带着一群学生。我感觉自己就像实验小白鼠。我曾以为我就要死了。

后来他们让我回家了，并不是因为我的病变好了，而是因为我的白细胞数目跌到1，000以下。他们认为回家恢复会更安全，家里感染的风险会低很多。

我收到了北岸长岛犹太医院的来信，询问我是否有兴趣参加临床实验。他们向我解释了临床试验的安全度，也消除了一些我对参加实验的恐惧和谣言。

You joined a clinical trial in December 2008. How did that happen?

After a hospital stay in 2008, I was so discouraged because I was not responding to any of the medicines (methotrexate, plaquenil, prednisone). Every doctor that came in to see me had a group of students. I felt like a guinea pig. I thought I was going to die.

They sent me home—and not because I was better, but because my white blood count had dropped below 1,000 and they decided it was safer for me to recuperate at home, where there was less risk of getting an infection.

I got a letter from North Shore Long Island Jewish Hospital, asking if I’d be interested in participating in a clinical trial. They explained how clinical trials are very controlled. They dispelled some of the fears and rumors I had about joining a trial.

是什么让你觉得这样做是正确的呢？

我发现非洲籍美国人参加临床实验的很少，我觉得我应该做些什么，帮助人们改变对参加临床实验的态度。那就从我开始吧！

What made you think to yourself, ‘this is the right thing to do’?

I found out that enrollment on the part of African Americans is very low. I felt that I could contribute to this cause and help change the attitude towards participation in clinical trials—let it begin with ME!

实际上这次参加临床实验的经验很好，我用日记记录了各种并发症情况，工作人员也很细心。每两周，风湿界顶端医生理查德富里博士都会为我做一个全面的检查。同时，我的参与也为我赚得了一些补贴。这不仅减少了我需要支付给COBRA保险的大把花费，与此同时，我还得到了顶级医疗服务。

The experience in this clinical trial has been great!  I have to keep a diary of symptoms and illnesses. The staff is very attentive. I get a full exam by one of the top doctors in rheumatology, Dr Richard Furie, about every two weeks!

I also get compensated for my participation. So this has helped me reduce my medical cost which I am paying very steeply for through COBRA and get top medical care at the same time.

在支持团体，你总是接触他人并提供帮助。是什么让你觉得帮助他们是一件正确的事？

因为我相信“善有善报，恶有恶报”，让我觉得这是件正确的事。要不是我得到了他人的鼓舞，帮助与支持，我将不可能与之回报。想要为疗愈世界做点什么，这就是我回报的方式。

At support groups, you always reach out to others and offer your help. What is it about helping others that feels so right to you?

It feels right because I believe that “what goes around, comes around…” I would not be able to give back did I not have the encouragement, support and assistance of others.

I want to contribute to the healing of the world. This is my way of giving back.