Last week I talked about Multiple sclerosis (MS) for Mutiara Umat (MU) circle via SKYPE. Mutiara Umat is an Indonesian Muslimah society based in Sweden. It has approximately 100 active members. At first, I told the organiser that I might be not eligible to speak about MS since I do not have medical training background. I recommended them another name that I believe has the expertise to talk about MS. However, the organiser convinced me that rather than a comprehensive medical explanation about MS, they want me to speak about MS from the survivor’s perspectives, such as how I manage to do my daily life and its impact toward my family, and soon. Okay then.
They gave me 1.5 hours to speak and discuss MS. I spoke a glimpse about MS from a medical perspective, such as what is MS, what could cause MS, the symptoms, and the treatment or medication. I also linked it to several common types of autoimmune disease. Moreover, as requested I also discussed how I manage my daily life, especially managing fear and motivation when being challenged by autoimmune disease or disability verdict. I hope the talk can help people to identify or coupe when they or their family members have something suspected/diagnosed with MS, or autoimmune disease in general.
For me, the most interesting part is the Q&A session. The questions indeed ask about how I deal with MS, but I can summarise that the omnibus of the questions is how I manage to do my PhD aside from my roles as mum and wife. The other theme that I can sense from those questions is about women’s guilty or useless feeling because they “just stay at home and do nothing but take care the family” [italic = the exact statement was delivered the same in Bahasa Indonesia].
It makes me uncomfortable to hear women’s struggle to raise legitimacy that they are worth and contribute to the family.
Women, you are worth even when you are a stay at home mum, or whatever you do. It is only a different battlefield for a different woman.
I can do the calculation about how much a household has to spend for childcare or nanny if mummy cannot or doesn’t want to take care their children. There is also economic calculation when a mum breastfeeds the baby, instead of using formula milk. We can also count the cost we spend to eat at restaurant or cafe if mum does not cook. Those are several financial gains can be listed if somebody asks about mum’s contribution toward the family. I believe there are more can be listed.
I mentioned in the talk that people might be facing different battlefield. For me it might be MS and PhD. For other people, the battlefield might be their kids or parents, or works, or spouse, or anything. Whether you are women or men, working women or stay at home, with doctoral degree or not, prestigious school or not, affluent or not, have kids or not: it does not matter. It does not matter what women’s status or label in the society is.
For me, one battlefield is never more important or less important than the other battlefield. I believe it is all the same. In my religion, everything we do is to serve God or if you are not a Muslim, what matters is whether you intend to make society better or not. Just like Jewel mentions in her song: “In the end only kindness matter”.
Some people think my PhD student title looks fancy, not every woman can afford that title. Yes, I agree, I count it as my accomplishment. However, on the other hand, this title makes me put aside other things; such as my time with kids or my ability to cleaning the house. I sometimes envy other mum who can cook fancy food for their kids, or keeps the house always clean and tidy, or can teach their children memorising Al-Quran in very early age.
Everyone has their unique ability. It is true when a woman has a role in the public sphere (i.e. work outside the house, study, be a volunteer, etc) more people can recognise or acknowledge her work or contribution. It is natural because there are more people live outside our household than, let say, five or six family member live inside our house. There is also a tendency for a human to take for granted everything that is free. My mum never charges me for food she makes, I just enjoyed the food and forgot to say ‘thanks’ to my mum, or praise her delicious food. I just realise now that when my kids/husband say thanks or praise my food, I usually am very happy, so does my mum, maybe. What I can do when the useless or exhausted feeling come to me, I repeat it myself: “If there is nobody appreciate my roles or ability, I will make sure that I appreciate myself.”
I believe that everything we do will come back to us. You will harvest apple when you grow an apple. Maybe we can not see the result immediately. It probably comes in the future. The yield can be nice and reliable children that take care of you when you are old. Or succesful kids that make you very proud. Or people who cherish your children when they are away from you in the future. Or the better society for your children to live in. Any good deeds come to you maybe because you did something good in past.
There is a story about evil ghost’s conversation with his subordinate (Apologies I do not know the source, I found it on some social media):
“If you want to ruin a family, ruin its mother first.
Firstly, make her continuously feels exhausted so that she feels weak, fatigue and powerless.
When she already feels exhausted, take away her gratefulness. Let her feels that she spends her entire life just to take care the family that gives her nothing than tired.
When she already lost her gratefulness, take away her self-confidence. Let her sees only people’s happiness thus forget that she is also happy and worth. Make her feels the inferiority and useless feeling.
If that has happened, then take away her patience.
Moreover, you will find that house is ruined, started from the door called mother.
Because mother’s happiness leads to family’s endurance.”
So, women… let’s cheer up and be proud of whatever our role and title are.