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.