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. 

November 25, 2013

Umm Anonymous on Living with Multiple Sclerosis, Part 2

Umm Anonymous is a Muslim mother of two. In early 2012, she was diagnosed with relapsing-remitting Multiple Sclerosis and is currently in remission. To read the first part of our interview with her, click here. Portions of this interview have been altered to maintain the sister's privacy. 

Now before you continue, what exactly is Multiple Sclerosis?
Multiple Sclerosis (MS) is an auto-immune disease. An auto-immune disease is a disease where the immune system is attacking some part of your own body. For some people, the immune system is attacking the digestive system like in the case with irritable bowel syndrome. Some people have rheumatoid arthritis where the immune system is attacking their joints.

In the case of MS, your immune system is attacking your nervous system. It’s attacking the brain, attacking the spinal cord, and attacking the nerves. If you have a room full of people, all of whom have MS, all of them are going to have different symptoms. There might be some overlap but it really depends on where the attack is taking place, and how it’s taking place, and how previous attacks took place. Alhamdulilah, so far there hasn't been any permanent damage in any part of my body but the possibility exists. 

And there are different types of MS. There are some more degenerative than others where the person will end up in a wheelchair and will be constantly under the care of other people, either in a nursing home or in the care of their family members. Then there are other people who have what is called relapsing and remitting MS so they’ll have an exacerbation (a flare-up or an episode of symptoms) and then after a few weeks’ time it will go away. So the exacerbation that I most recently had lasted for two months.

Why does the immune system attack the body? Is it trying to rid itself of something?
They don’t know. Which, for me, is a very convenient answer. 

My honest belief is that these auto immune diseases are environmental. The contaminants in our food supply, the genetically modified foods, the environmental and industrial pollution that we're exposed to has a lot to do with how our bodies just can’t handle this chemical onslaught. But the official answer is that they don’t know the cause. 

And the reason why I say that’s the convenient answer is because if they were to say that it’s because of this environmental, industrial and agricultural pollution, that it’s genetically modified food, or it’s too much sugar in the diet, or not enough of that in the diet, then it would require government action on a massive scale to fix the problem. 

What happened next at the Doctor’s?
So the doctor said, “You have Multiple Sclerosis.” The first time I heard her say it I just kind of tilted my head and looked at her and she started to explain some more. The second time I heard her say Multiple Sclerosis, I just burst into tears. I didn't really know a whole lot about the disease but in my head I just saw that in a few weeks I was going to be in a wheel chair, all curled up and in pain, and that I was going to die after just a few, short, excruciating years.

I was scared for my children, for my husband, for myself. I had deteriorated so much in the course of just a few weeks I thought how much further am I going to sink? The doctor held me for about ten minutes and just let me cry on her shoulder. And then after 10 minutes she said, “I don’t know a whole lot about the disease but it’s really not that bad. I know two people who have it. One man is 80 years old and he swims like 3 miles in the bay every single day. And he’s 80 and he has MS. It’s probably very scary for you and I know that you’re in a lot of pain but you can live a very, very active life with this disease.”

So I started asking her questions. And a lot of the questions I was asking she wasn't able to answer. Her role was emergency medicine, not neurology. But she said there was an emergency room nurse there in the hospital who also had MS. I couldn't believe it.

Here I was not able to walk, not able to lift my leg, not able to keep myself from peeing on myself and then there was somebody with the same disease who was able to be a nurse! Nursing is manual labor; you just have a degree. But it’s physically demanding work. At this point it had been weeks since I carried my son or allowed my kids to sit on my lap because I was in so much pain and I was so weak. The doctor asked if I would like to speak with her (the nurse) and I said “absolutely!”

In the meantime my husband had come to the hospital and he saw me crying. And I told him what happened. He took a deep breath and he said “Believe me; you’re going to be fine, inshaAllah.” And I know that he was trying to suppress his emotion in front of me because I was already so emotional. A few minutes later he stepped out to call his mom to let her know what was going on because the whole family had seen me get sicker, and sicker, and sicker. He called his mom and that’s who he let his emotions come to the surface with because he knew that I couldn't handle his emotions and mine. When he came back, he was together and he was encouraging.

The nurse came in and saw me crying and gasping and sobbing and she introduced herself and the first thing she said was, “I hear that you have MS and you have lots of questions but first let me tell you that you’re going to have to get over it.” She then explained how she was sick before getting her diagnosis and how, after being diagnosed, she spent so much time being miserable and angry about it that she ruined the relationships she had. It took another person with MS to tell her to snap out of it more than a year later for her to change things.

It’s bad to have a chronic illness and MS is a painful disease. It’s a disease that if it doesn't disable you completely, it’s going to interrupt your life frequently. But, when you’re not being interrupted by it you can enjoy the fact that you’re alive and that you’re not sick. The nurse advised me not to focus too much on my sadness because I had a life to enjoy. And that was what I needed to hear, from someone who had the disease because it wouldn't have had the authenticity that it did coming from someone else just saying “cheer up, you’re going to be fine.” 

I started treatment that night which was a five-day course of intravenous steroids to stop the autoimmune reaction and allow my body to recover. In the first dose, I went from not being able to move my foot at all to being able to move it a millimeter. And because it had been so long since I was able to move it, I saw that one millimeter. With every subsequent dose I was able to move more and more. 

Everything happened so fast and your body’s abilities deteriorated so quickly, how were you mothering through all of this? How did your children respond to what was happening?  
My daughter still had her classes in the masjid and I had errands to run, groceries to buy, doctors appointments I needed to go to either for myself or for my kids, so I couldn't not do anything. But I did have to be more selective about what I was capable of doing. I said no to anything that I didn't NEED to do. I was still going to work and taking care of the things I needed to take care of. 

Alhamdulilah my in-laws helped a lot with the cooking, even if it was just feeding the kids.Whenever they were home they would also take the kids so I could rest from all the pain that I was dealing with. My husband took on a lot of the cooking as well and whatever we didn't cook, we would order out. It was about two months that I didn’t cook because I couldn't. I wasn't able to. 

It was about 3.5-4 weeks between the time I noticed my early symptoms and the time that I ended up in the hospital. My son was two and my daughter was four and I couldn't carry them. I couldn't even go up and down the stairs. My son has physically grown since then but in the beginning of all of this, his legs were barely long enough to get up the stairs and I couldn't carry him. That last week I was home because it was my vacation from work and was going to my doctors appointments and taking my daughter to her Quran class and that was pretty much the only thing that I was capable of doing. Even just going to the Quran class was so fraught with anxiety because I was having so many problems.

The children saw me losing my abilities and they would ask about it. They knew that I was in a lot of pain and they couldn't touch me. Literally, nobody in the house was allowed to touch me because I was in that much pain. My husband would do whatever he could to try and distract them so they wouldn't touch me but their children and they make mistakes. I would try not to scream or shout at them but they would see me wince from the shake of pain if they touched me by accident and right away they would start to apologize. Just someone brushing against my arm was so painful it would make me want to cry.

They knew that I was having trouble walking and my daughter was so helpful. If she saw me struggling to get up the stairs she would say: “Mommy, I’ll carry you.” Or she would offer to carry my bags. Or if she saw that I was having trouble getting out of bed or getting out of a chair, she would ask me what I needed and if she was capable of doing it she would do it for me mashaAllah. She grew up so much in that period. She understood when I said “mommy is sick” or “mommy is in pain” and I didn't want to keep on telling her that, but it was the truth and I had to explain to them why I was having such a hard time.

On one hand I was proud to see the level of emotional maturity that she had but on the other hand I was sad to see that level of maturity in a four-year old. In my mind four-year-olds should kind of be clueless and playing but Alhamdulilah these things are from Allah. We’re all under Allah’s guidance, even our children. And so Allah had guided her to be aware of what my needs were and aware of her abilities to help me when she could, alhamdulilah.

Even my son, at only two, he was also very sensitive to my needs. One day though, like the Friday before I ended up in the hospital, it was the three of us at home and my husband at work. My husband asked if he should take time off and I told him not to because I didn't know what was wrong or how long I was going to be sick. I told him to save his sick days because we didn't know if things were going to get worse and we would really need them. I had to beg him not to use his sick days but he would still call like every hour just to see if I was okay. Sometimes he would come home during his lunch break just to see if I was okay. I was in so much pain at this point that if I wasn't going to the doctor, I spent the whole day in bed. When my husband was home, he would do everything that he could to make home fun for them and to keep the house clean and the laundry done and the kids food eaten and all that stuff. 

But after a few days my son was like, “I don’t want daddy to play with me I want you to play with me.” And he had been begging for weeks for me to play with him. I was feeling guilty that I couldn't play with my son. So on this one day, the day before I ended up in the hospital, I got down on the floor to play with them and I had to actually lift my legs up and put them into place with my hands because I couldn't move them on their own. He would try to sit on my lap and I would try to bare it as long as I could but it was just so painful.

Dealing with all the pain during the acute phase of my symptoms, I was basically mothering with other people’s help. My decline was so steep and so obvious that pretty much the whole family pitched in to help. All that I was really able to do, and I’m not so sure I even did a good job of it, was make a lot of dua to make sure that the kids were fed and that they weren't getting hurt.   

When I was admitted to the hospital, my husband would take the kids to school and either my mom or my husband’s mom would pick them up and keep them until my husband got out of work. I would see the kids about every other day, about 5-6 times total while I was in the hospital. 

How was it for your children to be in the hospital with you and see you in the hospital?
They seemed fine, they didn't seem scared or uneasy. They were happy to see me and I was happy to see them. I missed them. I had never been away from them in that sort of way. And it’s funny because when you’re with your kids day in and day out, you want a break, you want some peace and quiet. But when you’re away from them and its not by choice, you miss them. Just seeing them walk into the room brought tears of joy to my eyes. Its very easy to take your kids for granted when they’re around all the time. 

What was rehabilitation like?
Every day I had four hours of therapy. Two of them were occupational therapy. They teach you how to cook, clean, and do all the other things that enable you to function in your environment. I also had two hours of physical therapy to help make my body stronger.

In the rehabilitation part of the hospital I had to learn how to walk. I had to learn how to shift my weight from the left foot to the right foot. You know how you’re in the grocery store standing in line behind someone with a 1,000 coupons and so you stand on your left foot and when that one gets achy, you shift your weight to your right foot? Well, I had to learn how to do that. And it felt like the floor was a sheet that was sliding under my feet. The sheet would run out and there would be nothing and I would just fall into an abyss. The sensations in my feet and legs were so messed up that just moving from one foot to the other was terrifying because I didn't want to fall and break a hip.

It wasn't like I had lost strength in my legs, my muscle tone and my strength hadn't gone away at all. It was the coordination, getting the muscles to work in the right way together. That was completely out of whack.

It’s not something that a lot of people really think about but just shifting your weight, or walking, or getting in and out of a chair, or stepping over or around something on the floor, you’re not just using major muscle groups, you’re also using smaller stabilizing muscles that pull the whole activity together. I had no control to coordinate those muscles. So the large muscle would be doing one thing and the stabilizer would be doing something different. Or the stabilizer would be working too hard while my large muscles wouldn't be doing anything.

Physical therapy was painful, it was scary, and it was emotionally difficult. But Alhamdulilah everyone was really invested in helping me get better and everyone was really encouraging. So I went from the bed, to the wheelchair, to the walker, to the four-point cane, to the single point cane. 

How long did it take you to recover?
From the bed to the cane it took about 6 days and for me to be able to fully walk and resume regular activities, it took about 4 weeks. But I still used the cane for about a month after getting out of the hospital because I was still limping. So it took about a month after leaving the hospital for my walking to return to normal. 

About 4 days after leaving the hospital I started going back to the gym. Getting back on the bike really helped me to get my walking back in order because of the repetition of the motion. A lot of physical therapy is getting the brain to reconnect with the body and the repetition helps with that. All of the instructors at the gym were eager in helping me to modify the exercises for what I could handle. So after getting out of the hospital, the gym was the centerpiece in getting my physical health back. 

How were you praying during your time in the hospital?
I was praying either from the bed or from the chair. For wudu, I would have someone bring me a basin of water. Especially washing my feet, I couldn't stand on either of my legs without falling so you improvise. I had to combine the prayers because I couldn't keep myself clean and it was such a big production just to make wudu. So I would pray fajr, then I would pray dhuhr and asr together, and then pray maghrib and ishaa together. 

SubhanAllah. I didn't sleep well in the hospital. Either it would be too hot or too cold or because of the drugs that I was on, I was peeing all the time. Because of the medication I was literally getting up every 35 minutes to go pee. And it wasn't just a few drops, I was peeing in volume and it was an emergency. Many times I couldn't make it to the bathroom without making a mess.

I was waking up super early, before Fajr. And in my mind I thought, “well why even bother going back to bed because I’m just going to have to wake up again to pee, so let me just wait for fajr.” So I would make ithkaar and I would make duaa but more than that, I was making a lot of istighfar.

One of the things that dawned on me was what the emergency room doctor told me. She said: “You know, it could be a lot worse. I could have told you that you had a brain tumor and you only have six weeks to live so say your goodbyes. But that’s not the kind of disease that you have.” And when she said that, honestly, it made me cry more because I’m over here crying because I can’t walk and I’m not sure if I can ever walk again but at least I have the opportunity to make istighfar. And after like a good 45 minutes of boohoo crying it occurred to me the ayah in Suratal Baqarah where Allah is talking about the patient and He says, “when a  disaster or a calamity befalls them, they say ‘inna lillahi wa inna ilayhi rajioon’ (from Allah we come and to Allah we return). They’re patient. And Allah will bestow on them blessings and mercy as a result of their patience. 

But patience is in the moment. It’s not 45 minutes later. So I was sad because I knew I had lost a really prime opportunity to display patience and to show my Lord that I was submitting to whatever He decreed for me. I was sad that I blew that chance. So I told myself that I wasn't going to allow opportunities like that to miss me again. 

November 22, 2013

Umm Anonymous on Living with Multiple Sclerosis, Part 1

Umm Anonymous is a Muslim mother of two. In early 2012, after a mysterious and rapid decline of her physical abilities, she was diagnosed with Multiple Sclerosis (MS), a chronic autoimmune disease. Alhamdulilah, she is now being treated for MS and is in remission. Portions of this interview have been altered to preserve the sister’s privacy.

What happened the day you were admitted to the hospital? Where did all of this start?
The actual symptoms started way before I was admitted to the hospital. 

In hindsight, I had an episode of MS which went undiagnosed. There was a three to five week period where I lost the ability to read with my right eye and I had a 15-day migraine. It wasn't a migraine just when I woke up or just when I was tired or just when I was hungry; it was all day, every day, with no abatement for 15 days. I had jaw pain, I had ear pain; the entire right side of my head was in pain: head, neck, and shoulder with the loss of my ability to read. I could see who I was talking to, I could see different objects in the room, I could drive, but if I put a page within my line of vision I couldn't see the words with my right eye. It would just be a white sheet.

I went to eight doctors to see what the problem was. Literally, eight doctors and not a single one of them said that it might be MS.

I had an MRI which came back inconclusive. There was some spot of abnormality but it was too small for them to draw any conclusions. I was told to come back in three months to have a contrast MRI done but by then I felt fine so I didn't go back. I was given some medication for the migraines which didn't work because the medication wasn't to treat migraines related to MS. But at that time I didn't know that I had MS and my doctors didn't either.

When I started to get sick again I was preparing for a 65 mile bike race. My workouts would be about 2.5 hours long, four to six days per week, and I could go to 2.5 hours without feeling tired. At the beginning of the month, I started to feel fatigued at about two hours, and then later that month 90 minutes became difficult for me. And then an hour and 15 minutes was getting difficult. I thought maybe it was because I wasn't eating right, I thought maybe I had put on some weight. I tried making modifications but it didn't make a difference. My stamina was still declining and I couldn't figure out why.

One day I had a very intense run and it felt great. But later that day I started feeling a tingling at the edge of my left foot and thought maybe I was pounding my feet too hard during the run. It didn't make sense to me but I figured it would go away in a day or two.

Prior to that, I noticed that if I put pressure on my right thigh I would feel a really warm sensation. It wasn't burning, but it felt like someone took a heating pad and just covered that part of my body. I didn't think anything of it and it was really subtle; I almost barely noticed it. Then the thing happened with my foot. Within a few days after that, the sensation covered my entire body with the exception of my head, neck, and left arm and shoulder. It was this pins and needles feeling throughout my entire body. Sitting was irritating, standing was irritating, walking was irritating. If my clothes rubbed against my skin it felt like someone was scratching me with hot, broken glass. My skin just hurt.

Knowing what I know now about MS, this is all within the range of what’s normal. And the range of what’s normal for someone with MS is really, really broad because it’s a neurological disease. Depending on what part of your body is being attacked by your immune system, that’s going to bring about certain symptoms that you might have but I might not have even though we both have the same disease. 

I went to the emergency room the next day because my primary care doctor had a death in his family so he wasn't working. The emergency room doctor was unhelpful and kind of took my symptoms as a joke. He gave me an antibiotic and a prescription strength motrin. He also encouraged me to go see the neurologist because he was poking me and asking if it hurt and I was practically jumping off the table. He couldn't believe that his poking me was causing so much pain. He figured I might have a really bad case of the flu. But he gave me an antibiotic and the flu is a virus and viruses don’t respond to antibiotics because viruses are not biotic but, whatever.

So I went home feeling frustrated, feeling disrespected, feeling like I had wasted my day because I know that whatever he thought it was, he was way off. He diagnosed me with something called Neuralgia. It’s just a fancy name for my symptoms. It’s not a diagnosis; it’s more of a description. It’s just an adjective.

I saw the neurologist and she gave me a very thorough physical exam. She had me squeeze her fingers, walk on my toes and walk on my heels, hop on one foot and walk in a straight line. She was also poking at me and she checked my reflexes. All of my reflexes were fine. So that physical went well. She couldn't figure out why I was feeling so weird. She put me on a medication called Elavil which is an antidepressant, but she was prescribing it for an off-label use because they found that it also works for neurological symptoms.

I went home and started taking the Elavil because I was in so much pain. At this point all of my skin hurt, except for the parts that I mentioned, and now my feet were painfully cold. The pain I felt in my feet was like I decided to go shovel the snow after a blizzard barefoot and with no pants. It was painfully cold. I was wearing these thick fur-lined boots everywhere with ski socks. And my feet still felt cold. In addition to this, if anybody touched me or brushed against me my skin would feel like I was being scalded with an iron. But internally I felt cold all the time. I had to wear layers upon layers of clothes.

It was a Friday afternoon and I checked my insurance provider directory and I just started calling any doctor that would take my insurance. "Can you take me today? No. Okay." "Can you take me today? No. okay." I wanted to see someone that night because I wasn't sure if I would get any treatment over the weekend and I didn't want to go back to the hospital and run into that other doctor.

Now, were you were calling another neurologist or just any doctor?
I was calling ANY doctor because I was desperate and I was in so much pain. In addition, I was feeling weak. By this point it had been a week since I stopped exercising because I just couldn't do it anymore. 

I was still working, but it was very difficult for me to get around the building. Going up just one flight of stairs was like I was carrying a load of rocks. And I’m a physically fit woman. I could hop up the stairs on one leg and not be breathing heavy by the time I get to the top floor. But just in the course of two weeks my body kept getting weaker and weaker and weaker. And that was what really concerned me because it’s not like I live a life that’s sedentary. It’s not like I’m majorly overweight. I’m a pretty healthy person, a very physically fit person, and to see my fitness level drop so quickly and so dramatically in such a short period of time was really scary for me.

So I went to another doctor and I started telling him my symptoms. I was prepared for this appointment. I knew the names of my drugs; I knew what they were to be used for. I kept a journal of all the things that I was feeling so we could try to piece together what the problem was. I wrote down everything. When I went in, he didn't seem totally interested in listening to these things and I told him, "No. You need to listen to this. I don’t know what’s wrong but I know that I’m very sick."

Another issue that I was having trouble with at this point was urinary incontinence. I didn't know whether it was related to the other symptoms I was feeling but in that time I stopped drinking tea. I also drastically reduced the amount of water I was drinking. I would avoid liquids all together. Fortunately I worked close to home, so if I had a free period I would run home to change my clothes and take a shower because I would have najasa on me and wouldn't be able to pray.

I told the doctor about this and he thought I had something called Rhabdomyolysis which is kidney failure due to excessive physical exertion. High performance athletes are more likely than other people to get it. But one of the hallmark signs is that your urine is going to be a very brown color. But my urine wasn't brown. And I hadn't exercised in more than a week at that point so that definitely wasn't it. But he evaluated me for that and took my blood work and urine and my results were fine.

I went back to my neurologist a second time who had me go through the physical exam again. It was the same exact physical as before. Walk on your toes, walk on your heels, walk on one foot, squeeze my fingers, lift your toes from the ankle, and this time I couldn't do any of the things she was asking me to do. 

The first time I saw her, she essentially told me that it was all in my head. “Maybe you’re too stressed, maybe you need to sleep more, maybe you should take a break.” The second time I saw her, which was only in the span of nine or 10 days in between, I could hear the fear, doubt and confusion in her voice and I saw these emotions on her face. In fact, when I walked in from the waiting room to the examination room I was walking with a very heavy limp. My ability to walk at this point was rapidly declining. I would lead with my right leg because it was my stronger leg and I would just drag my left leg behind me. So when she saw me walking she said, “What happened to you?!” Not ‘hello’ or ‘how are you feeling?’ But, “What happened to you?!” And I said, “I don’t know doctor; I’m sick.”

Then she wrote a prescription for an MRI of my entire spine, thoracic, cervical and lumbar spine. She also wrote a prescription for me to get an ultrasound on the veins in my legs because she couldn't explain why my legs and feet felt so cold to the touch. She thought maybe I was having some sort of vascular problem. The ultrasound was normal. Because she looked so confused and just in over her head, I decided to see a different doctor.

My family had been after me at this point to see a doctor of sports medicine. We had the interview of my symptoms. By this point I was making a mess on myself in the bathroom. To walk, I actually had to pick up my leg to move it to where I needed it to be. Getting in and out of the car I’d have to do the same. He did an x-ray of my spinal column and 15 minutes later said that bones were fine. Then he started the physical exam. I couldn't lift my leg. I couldn't point or flex my toes. I couldn't resist him when he pushed down on my leg. He just folded his arms and said, “You really can’t do it?” And I said, “No, I can’t.” Then he asked me did I have a car accident? Did I fall down a flight of stairs? Was I hit with or by anything or anyone? And I said, “No.” I didn't have any physical trauma, it just happened. And I shared all of the information I had for the past month of symptoms and he listened to all of it.

He told me to go the imaging center that day to get an MRI but I couldn't get the appointment because I didn't have approval from my insurance. He called the supervisor of the imaging center himself on her cell phone and begged and begged and threatened on my behalf. This was the first time I had ever seen this doctor, so for him to stick his neck out in this way was amazing. The final answer from the imaging facility was no.

He wrote me a prescription for the emergency room and said “they have to take you.” He wrote on the prescription to check for Cauda Equina Syndrome. Cauda Equina means 'horse's tail'. At the end of the spinal cord there is this tail that hangs, and in the case of an accident you could get one of the pieces of the tail caught in between your bones which is a medical emergency that they’ll want to treat within 24-48 hours. I had already been like this for a month. But he knew that writing that on the prescription was absolutely necessary to get me the MRI. And he wrote his cell phone number on the prescription and said the radiologist had to look at the MRI that same day and call him back no matter what time it was. 

So I went to the hospital. I thought that I would be out within a couple of hours. They gave me the MRI for my spine and after giving me their own physical they added an MRI of my brain. They brought me back to the emergency room and I’m just sitting there waiting. After some time, I called the nurse and said “I’m going to get a ticket so, what’s up? Can I talk to the doctor? Should I go put money in the meter?” She said, “No. We’re keeping you.” And I said, “What? Why?” And she said, “I’ll have the doctor speak with you.”

The doctor came in, said she looked at the MRI, and then said, “You have Multiple Sclerosis.” 

November 18, 2013

Beautiful Reminders: Three Veils of Darkness

Allah, subhana wa ta ala, says in the Qur'an (translation):
"He created you from a single person (Adam); then made from him his wife (Eve). And He has sent down for you of cattle eight pairs (of the sheep, two, male and female; of the goats, two, male and female; of the oxen, two, male and female; and of the camels, two, male and female). He creates you in the wombs of your mothers, creation after creation (in stages) in three veils of darkness, such is Allah your Lord. His is the kingdom, La ilaha illa Huwa (none has the right to be worshipped but He). How then are you turned away?
--Surah Az-Zumar, 39: 6

The Three Veils of Darkness
In the tafsir of Ibn Kathir, it's stated that Ibn Abbas, radiAllahu anhu, as well as others, held that the three veils of darkness refer to the darkness of the mother's belly, the darkness of her womb, and the darkness of her placenta. 

Modern science has confirmed these three veils and also shows us that each one contains three layers of its own, mashaAllah. The abdominal wall (the belly) is composed of the external oblique, the internal oblique, and the transverse abdominus muscles. The three layers of the womb are the epimetrium, the myometrium, and the endometrium. The three layers of the placenta are the amnion (the innermost layer), the allantois (the middle layer), and the chorion (the outermost layer).

In addition, life in utero happens in three distinct stages: the pre-embryonic stage (when cells are dividing and settling themselves into the uterus), the embryonic stage (when the settled cells become the basic organs and systems of the baby's body), and the foetal stage (when the foetus begins to resemble a human until it is born). 

"La ilaha illa Huwa (none has the right to be worshipped but He). How then are you turned away?

November 11, 2013

Beautiful Reminders: Women Are Like a Rib

In an authentic hadith, the Prophet, sallallahu alayhi wa sallam, advised the men: 
"He who believes in Allah and the Hereafter, if he witnesses any matter should talk in good terms about it or remain quiet. Act kindly towards women, for women was created from a rib, and the most crooked part of the rib is its top. If you attempt to straighten it, you will break it, and if you leave it, its crookedness will remain there. So act kindly towards women." 

In another narration:
"Woman is like a rib. When you attempt to straighten it, you would break it. And if you leave her alone you would benefit by her, and crookedness will remain in her." 

And in another narration: 
"Woman has been created from a rib and will in no way be straightened for you; so if you wish to benefit by her, benefit by her while crookedness remains in her. And if you attempt to straighten her, you will break her, and breaking her is divorcing her." 

--All three hadiths are related by Abu Hurayrah and recorded in the collection of Sahih Muslim. 

November 7, 2013

Umm Samar on Parenting Through Divorce

Umm Samar is a Norwegian-Palestinian mother of one, currently living in New Jersey, USA. She is a Language Arts teacher and an active member of her local masjid, volunteering her time to graphic design, photography, the Youth Committee, and the Women’s Volleyball team.

At what point in your marriage did you realize that divorce might be a necessary option for you?  Within the first couple of months I was concerned about the future of the marriage and within the first two years, seriously contemplated divorced. But I remained in the marriage for five years.

Before you actually got divorced, what were some of the concerns/fears that you had regarding the possibility of having to be a single Muslim mom?  
My main concern was being independent financially. I was a stay-at-home mom and housewife for five years and going back to work and maintaining a household for my daughter and I was my biggest worry.

When the time came, how did you explain the situation to your daughter and how did she react to/deal with the idea of divorce?
My daughter was very young at the time, only 3 years old, so I did not really discuss much with her other than telling her that both of her parents love her and that for us all to be happy and healthy, living separately was the best thing for us.

What was your transition from married mom to single mom like?
The transition was smoother than expected by the will of Allah, Alhamdulillah. The compromise of not being with my daughter was the most difficult for me. Feeling lonely at the times she would visit her father were difficult.

Though with hardship comes ease. I started using the free time in which my daughter was away from me to focus on reading and learning about my deen. The time I spent alone, though very dark at times, has proven to strengthen my relationship with Allah. This time I have used to do necessary reflection needed for my own spiritual, mental and emotional health Alhamdulillah.

I have full custody however, we have agreed on unlimited visitation which has ended up being weekends. I make all the parenting decisions independently and only seek the guidance of Allah in my decisions. Having strong ties and involvement with my masjid and community has proven to help improve our spiritual and emotional health as a family. My daughter’s father is also very involved in the masjid he attends mashaAllah. This involvement has been beneficial in making up the missed family unit socially.

Unfortunately many Muslims, men and women, face stigma from their communities when people learn that they are divorced. Have you ever faced stigma for being divorced? Or your daughter for being raised in a one-parent household? If so, how did you deal with these experiences?
Honestly, Alhamdulillah we have not experienced these issues.

How has parenting through a divorce affected your relationship with Allah?
The time I spent alone was very dark at times and during this time I have been able to seek a deeper relationship with Allah. Reading and seeking Islamic knowledge has not only improved my relationship with Allah but all of my relationships including my own relationship with myself.

It has brought me self confidence where it lacked, guidance in my affairs, and contentment in my heart knowing I am never alone because everything I experience, Allah is watching me experience it. The hardships and trials I have experienced have painfully taught me to have tawakkul on Allah and to rely on Him with all my matters when I previously suffered through anxiety. 

When parenting times get tough, from where do you seek help and inspiration?
Quran! I read about the trials of the Prophet Muhammad, sallallahu alayhi wa sallam, and know that with every situation there is a solution within the Quran. I read the stories of other Prophets and the companions of the Prophet, sallallahu alayhi wa sallam.

I seek inspiration from their suffering and there lies my answers. Examples I often reflect on are the stories of Musa, alayhi salaam, Yusuf, alayhi salaam, Omar ibn al Khattab, radiAllahu anhu, and Asiya, radiAllahu anha.

I look at those around me whose suffering is greater than my own. I make dua and seek knowledge of my deen. I find my greatest source of confidence comes from worshipping Allah and seeking knowledge. I look for inspiration in all things, like Allah’s creation and I reflect. During hardships, I reflect.
I make istighfar (asking forgiveness from Allah).

What advice do you have for other Muslim moms who may be going through a divorce?
My best advice for anything is to seek help through patience, prayer and gratitude. I try to live by the philosophy to, “show forgiveness, speak for justice and avoid the ignorant (Quran, 7:199).”

Forgive others, also for yourself, so you release the pain they caused and so Allah can forgive you as you have forgiven others. Speak for justice which is an amana (a trust) not only for others but also for yourself. Avoid the ignorant and do not become one of them.

Make sincere dua and constantly renew your intentions for the sake of Allah. Be in a constant state of making istighfar. Heal yourself by doing deep reflection of your own heart and experiences. Have faith in Allah’s qadr. Know that whatever Allah has for you is better than what you can ask for yourself. Know that His mercy is greater than your own mother’s mercy for you or your mercy for your own children. Know that if Allah took something away from you that He will replace it with something better. Make dua for others. Learn about your deen and know the rewards for different acts of worship.

Know that if you show gratitude Allah will increase you where you need to be increased. Know the names and attributes of Allah and call on Him by them in the things you ask Him for.  Know that if you take a step towards Allah, He will take 10 steps towards you; if you walk to Him, He will run to you. 

November 1, 2013

Beautiful Reminders: Prayer as Purification

Abu Hurayrah, radiAllahu anhu, narrated:

"I heard the Messenger of Allah, sallallahu alayhi wa sallam, say: 'What would you think if there were a river running by the door of any one of you, and he bathed in it five times every day, would any trace of dirt be left on him?' And the people said: 'There would be no trace of dirt on him.' He, sallallahu alayhi wa sallam, said: 'This is like the five daily prayers, through which Allah, subhana wa ta ala, erases sins.'" 

--Related in Sahih Bukhari