November 30, 2013

Umm Anonymous on Living With Multiple Sclerosis, Part 3

Umm Anonymous is a Muslim mother of two. In 2012 she was diagnosed with Relapsing-Remitting Multiple Sclerosis and is now in remission. To read the first part of this interview, click here. To read the second part of this interview, click here. 

At the end of the day, only Allah knows. But right now, with what you know about yourself and with what you know about MS, what does the rest of your life with this disease look like?
I don’t know. 

I don’t believe my last exacerbation left any permanent damage because my last EEG didn't show any. But I have relapsing-remitting Multiple Sclerosis so I’ll have an exacerbation and then go into remission and then have a relapse and then go into remission and have another relapse. 

And even between relapses there are other symptoms. For me, one of the symptoms is itchiness. If the shower is too warm, when I get out my whole body will itch like if I had been stung by a bee but since its under my skin I can’t scratch it or soothe it so I just have to let it run its course.  I have to shower in cold water now, I can’t wash the dishes with hot water because it will aggravate my hands.

I’m on medication, so now I take a daily injection. I have charts that show where not to inject my body because I already injected myself there last week. Every day I have to inject myself in a different part of the body because when the medication goes in, it burns. So if you keep injecting in the same place, the medication can burn the fat off of that area and you’ll have a big dent in your body. Sometimes I’ll mark Xs and circles all over my body so I’ll know where or where not to inject on a particular day. 

It’s a life of adjustment. And alhamdulilah the adjustments that I've had to make haven’t been huge. Some people have to put ramps in their house and make it wheelchair accessible. Fortunately I've not had to do that. Alhamdulilah now (in remission) I’m able to do everything that I used to do, I just can’t do as much of it. 

And I don’t know if the disease will become degenerative; that’s unpredictable. I feel fine today but I could have another exacerbation tomorrow. I don’t know when it will come, if it will come, if it does come how long it’s going to last, and if it lasts for a long period or a short period if it will leave permanent damage. You just don’t know. 

Is that something that you worry about?
No, because I have to enjoy the time that I have. 

If I were to worry about the possibility that I might have another really severely disabling experience, I wouldn't be able to enjoy my life. I wouldn't even be able to function nominally. So I don’t give it a whole lot of thought. I’m going back to school and I've made dua asking Allah to grant me health so that I can get through school. So I can’t say that I worry about it but I do make dua that Allah preserves my health and that Allah gives me the strength to deal with whatever it is that He’s going to give me. 

Has this experience changed your outlook on parenting?
One thing’s for sure: you can only do so much. 

Our culture in the United States, even the expectation amongst Muslims, is that in order to be a real woman you have to be nearly perfect. Perfect as a mother, as a wife, people expect such perfection in the fulfillment of our roles that unfortunately we fail to see the humanity in our relationships. So when we’re tired or when we have a headache or when we barely got any sleep or when we have cramps or when we have a toothache, we’re still hard on ourselves and we don’t allow ourselves to relax. We don’t allow ourselves to just say, “You know what? Don’t anybody talk to me right now because I’m not in a good mood. I'm in pain and I need a break.”

But to go back to your question, yes. Now that I have a chronic disease that poses a number of limitations, I have to recognize when I need to stop. So if I’m planning something or if someone asks to come over or asks me to do something for them, now I write everything down and look at my calendar and ask realistically if I’m going to have the energy to carry it out. If not, then my answer is going to be no. Or I’m going to have to postpone it or do some shifting.

Even when it comes to my kids, I have to know when its necessary to say no and they have to learn that there are boundaries and that mommy is not going to be able to do everything for you and nor should they expect that.

With MS, most patients look fine but the symptoms can be triggered by almost anything. For me, dehydration triggers symptoms, heat triggers symptoms, too much activity in one day or being in a room that’s really crowded and loud will just set my nerves off. I might feel faint, I might feel weak, or itchy or dizzy or that the room is spinning. There’s really no telling what I’m going to feel but I know what my triggers are so I try to avoid them as best I can.  

With my kids I have to communicate what I can and can’t do, and not just for them but for everybody.

How has this experience affected your outlook on life in general?
I think this experience really taught me the meaning of the term submission. 

The idea that you just have to allow yourself to deal with what it is that Allah has decreed for you. I can’t do a whole lot to change Allah’s decree but how I respond to what Allah has decreed is up to me. I can sit there and sob and be angry and be ungrateful and curse Allah or make statements like “I didn't deserve this” or even, aootho billah, charge Allah with being unfair. Or I can say okay this is what Allah gave me but He's also given me many other things that bring me joy, and many other things that bring me good opportunities to earn favor with Him. And this is possibly one of those opportunities.

One thing I spent a lot of time reflecting on, particularly when I was in the hospital, was that this could be an expiation for me, and I need that. This could be a way of raising me in rank, and I need that too. This could be a punishment, and that would be one less punishment that I have to deal with in the grave or on the day of judgment or at the end of my life. So no matter what this is, this is a positive thing.

And from that I came to the conclusion, not that it’s a unique conclusion I came up with like I’m Confucius or anything, but I realized that even in sickness there’s a blessing. Even in the loss of a job or the loss of a person that you love or a relationship or whatever, there’s a blessing in that. You have to be open-minded to it and pray for guidance. 

Through this whole experience, I pray for patience because, especially since having children, I realized that my patience level isn't where it ought to be. But more than anything, aside from praying for forgiveness, I pray for guidance so that I can recognize things as they are, not as I want them to be or as people are telling me that they are. I want to be able to recognize things as they are so that I know what I need to do and so I can do the right thing. 

I want this experience to be on my scale of good deeds. So that Allah can't say, “Well, when I tested you with health, you squandered it and when I tested you with sickness, you became kafr or you became arrogant or you became ungrateful.”

In a lot of ways, getting so severely sick as a wake-up call for me to recognize that I've been Muslim for so many years and there are so many things that I could have accomplished for my deen had I been focused. There was one period in my time of being Muslim where I really used my time efficiently and then there were other periods where time would fly by without me really growing as a Muslim. And anything that doesn't grow atrophies. I feel like when there isn't spiritual growth and you go through a period of stagnation, its not just stagnation; its regression because whatever spiritual conditioning you've been built up in your periods of growth, you’re not maintaining it and eventually you lose it. So this experience gave me the opportunity to really value my time and look at what I could be doing better.  

How has this experience affected your relationship with your husband?
I was amazed at how well he managed everything, especially in the weeks when I was the sickest prior to being admitted to the hospital. 

A couple of times I saw him lose his patience with the kids or with his parents or with the fact that the dishes were piled high but generally, and may Allah reward him, he was really solid. It's not that I expected him to not be reliable but I was just so impressed with how in tune he was with me and my needs and with the children and their needs. I was really impressed by his ability to sacrifice. 

The stereotype is that men really aren't that aware of things and they just kind of do things unconsciously and without consideration to other people but it wasn't like that with him in any way. So naturally, I grew in my love and respect for him. We've been married 9 years and there was a precipitous jump in my affection for him. 

When I was in the hospital I was making a lot of istighfar in how I fulfill my roles as a wife, as a mother, as an employee, as a daughter, as a daughter-in-law, as a sister, as a friend, and so asking Allah to forgive me for any deficiencies in the fulfillment of my roles and asking Allah to guide me in being better in the roles that I have. I think now I’m more likely to question my role in a relationship, regardless of who its with. I’m more likely to ask myself now what have I done to help or hurt the relationship. I know the question is specific to my husband but one thing I realized in the hospital was that these lessons really apply to all aspects of my life.

One of the duas I made while I was in the hospital was to ask Allah to guide me towards being a better wife. I wondered if I would have been towards my husband the way that he was towards me when I was sick. You don’t know what you’re willing to do or what you’re capable of doing until you’re in a situation. Everybody talks about, “oh well if it were me, I would blah blah blah,” but you really don’t know. You don’t know what you can expect from yourself and you don’t know what you can expect from the people around you.

It’s like with sins. Some people say, “Oh, I know I have iman so I can be around this certain thing and I know that it won’t affect me.” But you don’t know. You don’t know how much iman you have or how you’ll be affected by something. The fact that you’re even saying that kind of calls your iman into question, that you think so highly of yourself. You don’t know how you’re going to respond to a severe sickness or a death in the family or a stillborn baby or any other calamity. You might have it all planned out in your head but you really don’t know until it actually happens.

It all goes back to asking for guidance. Having been guided to the deen of Islam is one thing, but keeping me upon that guidance that I committed to when I took my shahada is something different. 

What would you have to say to another Muslim mom who encounters MS, either in herself or a close relative or in one of her own children? What advice would you want to share with her?
I would probably tell her the same thing the nurse that I met in the hospital told me. You can choose to be really upset about this or you can choose to focus on getting better and focus on benefiting from the time you've got while you’re here. 

Things are based upon perception. My first birth, I was scared and felt vulnerable and felt like I couldn't trust my body or my environment; I just didn't feel secure. The second time around, I birthed at home and I went into it with confidence, I went into it feeling a lot more relaxed. I was excited but I was relaxed so I wasn't as anxious and I definitely wasn't as fearful. So when  the contractions came, I didn't perceive them as disastrous or as “oh my god, this thing is gonna break me.” My attitude towards each contraction was different than what it would have been in my first birth. So my perception of the pain was significantly lessened than the first birth.

Just recently, I was with a sister, who was another homebirth mom, and we were talking to another sister who didn't have children and she said, “you know, I don’t mind the whole mothering thing, but it’s the labor that scares me.” And the other homebirth mom and I in unison said, “the labor is the easy part.” And it’s because the fear was gone.

So when you’re fearful about a disease like MS, or any disease for that matter, then your perception of what you’re going through is going to be heightened. So the bad is going to feel all the more bad, so bad that you’re probably going to miss any good that there is in it. You have to constantly check your perception and ask yourself, “do I really feel this way or is Shaytan trying to make me feel ungrateful?” And that’s his game: Calling things by another name.  When he went to Adam and Hawaa, he said “this is the tree of life.” He didn't say, “This is the forbidden tree that Allah said don’t go to.” That’s how he gets us to respond in a certain way, by calling things outside of the reality that’s there. 

So yeah, you have sickness, but there’s a reality to that sickness that it’s probably not as bad as you think. 

How has this experience brought you closer to Allah?
I used to make a lot of dua prior to getting sick but I think I know more of what to ask for now. 

Now I’m making dua more frequently and I’m making more specific duas. I’m making dua for other people more than I used to also because in having needs of your own, it’s easier to recognize others’ needs as well.

And there are different acts of worship that I’m trying to do consistently now. The Prophet, sallallahu alayhi wa sallam, said: “The deeds most loved by Allah are the ones done consistently, even if they’re small (Bukhari and Muslim).” So you know, instead of sitting down for two and a half hours to do tasbih once, sit for five minutes here and five minutes there and do it consistently. So that’s what I’m trying to do.

And these things aren't easy. They take effort. Let’s say you've memorized the morning adkhar. Just because you know it, doesn't mean that you’re going to do it. And even if you do it, you might not do it with meaning, your mind not be present. So you have to really question yourself and put in the effort because it’s not easy.  

This whole process has really been about learning to submit. Because these things are not in our hands. You plan to go to school, you plan to get married, you plan to have a bunch of kids, and you plan for their life to be this way or that way. Most of the time none of these things are as you plan them and so you have to submit and you have to adapt and you have to adjust and you still have to keep your faith intact. 

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