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Archive for the ‘Multiple Sclerosis’ Category

This year a friend of mine whose husband has MS was so kind as to organize a team for the local MS Walk. These walks are sponsored by the National Multiple Sclerosis Society and benefit their programs and services. Our team was called “Muslim Support” and we had nifty matching t-shirts with our team name on the back. We made shirts for our kids as well, saying “I (heart) Someone With MS.” There were three paths: 1, 3, and 5 miles each. Needless to say, the MSers and their families in our team took the 1 mile path. The others were feeling adventurous and so took the 3 mile.

I realized afterwards that having MS is somewhat like being on that walk. You start off the day at the starting line with everyone else, but you plod through your day slowly and deliberately while everyone else goes by as if they are going twice the speed.

Then, when you both reach the finish line (we all did close together in our case), you realize that they have done three times as much as you did, but in the same amount of time.

While you go off to recoup, the rest go off rushing throughout their day through numerous other tasks, while you struggle to regain strength from the first task.

This is your brain on MS. This is your body on MS.

The more and more a person progresses through the years with the disease, no matter what fancy medications they are on, the result is that this dichotomy between “normal” and “MS” only becomes more and more pronounced.

It is part of my lack of acceptance of this fundamental truth of MS that leads me into trouble sometimes. I don’t want to accept that I can’t do fifty million things in one day, so I say “damn to hell with the MS, I’m gonna do it!” and the MS just says, “screw you,” and raises its head in vengeance. My husband said one time when I fell into an MS slump–“You knew this was coming,” and I did.

That’s why the job of the caretaker is so hard because they see us struggle with the acceptance of our limitations, with the acceptance of dependency on medications, with the acceptance of dependency on rest and people’s help. And the most they can do is advise and support–only we can wrestle ourselves into accepting the realities of what is happening to our bodies.

Us MSers on the walk were fortunate enough to have our beloved spouses with us, and our children and families, plodding along beside us, and walking side-by-side with us as we crossed the finish line. And they alone know the true triumph of being able to do that feat of walking so far–something that normal people would take for granted. So we can only hope that as we plod along and our steps get slower and slower, that we’ll have those beloved caretakers by our side, matching their steps to ours, hoping that they don’t mind taking it slow, and hoping they get the reward for sharing our struggle.

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(btw, I’ll be back to the top 10 Tarbiyah Mistakes notes soon!)

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I’m tired.

Well, not now, as in now as I speak, or I should say, as I write. I’m just a tired sort of person sometimes. I have a new sort of beast to contend with thanks to MS and that is fatigue. Apparently it’s one of the main symptoms of the disease. I’d guess that if you pulled a random person off the street and said: “Multiple Sclerosis”, the first thing that would pop into their mind is “wheelchair.” But while not most people with MS are (or ever will be) in wheelchairs, most people with MS get TIRED.

MS fatigue is a funny sort of thing. And the odd thing is that I sit writing this late and night and you’d think: “Isn’t she tired?” but no, MS fatigue is unpredictable and comes when you don’t want it to. So yeah, I’d love to be drop dead tired enough and fatigued enough at bedtime to be able to hit the pillow and snooze, but NOOOOO, the MS brain buggers have decided that my fatigue only comes at the peak times of the day like mid-day, or early evening when it’s too freaking early to turn in for the night. So at night, I end up taking half or a third of a sleeping pill in order to sleep because I have insomnia!

I thought of fatigue today because I read a study that looked at how mothers with chronic illness deal with fatigue. Apparently the MS moms tended to deal pretty well with it the study found. I found out from the report that other diseases like rheumatoid arthritis (that also predominantly strikes women) cause similar fatigue.

So my mind wanders to a wonderful lady with grown up children who has lived with rheumatoid arthritis most of her adult life. She raised three kids as a stay-at-home mother and battled a horrible horrible disease that leaves her in unbelievable pain. I only know this from looking at how the disease has ravaged her hands and feet–I don’t know this from her because guess what? She never, ever complains about her health. I have sat with her on several occasions and she is the most uncomplaining, patient person I have seen. The only hint that I got of how much she deals with on a daily basis was when I asked how her recovery was from a surgery, and she said, “Thank Allah. I would never wish this disease on my worst enemy.”

I imagine sometimes what bountiful rewards such beautiful people have waiting for them in the next life. There is a wisdom in Allah’s decree. Things go wrong–way wrong, and we are left in the dark, with a seeming blight upon our life. Yet the character of a person can take that test and emerge shining with the noor (light) of patience, forbearance, and humility. I feel ashamed when I look at that sister and think of the times I complained or wept over silly, foolishly small afflictions. So yeah, being tired is not so bad of a thing after all, methinks.

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I came across the piece below on a discussion board (HERE), I could not track down the source. I know little about Mr. White except that he is a priest in Baghdad, so I’m not sure what to make of him–yet human suffering is all one and the same no matter who you are and no matter what you do. The same fears, hopes, worries, and pains afflict us all equally.

Prayer for a person with MS
by Canon Andrew White
Lord they tell me I have MS and at times I am afraid;
my future, my family, my ambitions are all full of uncertainties,
my body will not function as it used to and I no longer feel in control;
at times, though surrounded by masses, I feel so alone.
In my fear will you enable me to trust you,
in my vulnerability may I know your power
and in my loneliness will you assure me of your presence.

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One year has come and gone as in an instant.

It seemed like a few months ago, when, after a day of what seemed like false-alarm random labor pain that I would go to the hospital’s birthing center “just in case” and have Z in the shower half an hour after arriving.

It seems like just yesterday that I realized with a start that she was born on a Saturday, just like her brother, and three days after her 37th week, just like her brother.

It seems like mere seconds ago that I caught her, saw my husband’s teary, exited face saying, “we have a daughter, we have a daughter…” and then walked myself over to lay down with her, never letting her go for a second, Siraj by my side, as we just looked at her, the nurse still laughing that we two had “delivered” this baby before the midwife could even arrive.

Those after-birth moments are pure magic–even the nurse was so exited and congratulatory that my wishes were fulfilled, set long before the birth, that I catch her, keep her close, and attached to the cord as long as we wished.

Z.M.S.

She is named after her father’s paternal grandmother, a woman I wish I could have met, whom I know my husband loved so dearly, and she him, that I could say nothing but “yes, of course” when he proposed we name our first daughter after her.

She–the fact that she was a girl–made the horribly long, nauseating, and sometimes bedrest-bound days of her pregnancy so much more worth it.

Her birthday and my life with MS share the same timeframe, because I first started having symptoms shortly after her birth. I feel sorry for her that her early months were clouded by my own health issues, but it led to her having such a strong relationship with her father. Every time I climbed into an MRI tube or went to physical therapy, there she would be, playing with her baba. Even though she wouldn’t take a bottle and so he could not feed her, they bonded so closely and so well. A blessing in disguise from the lemons of life, indeed!

She was my comfort baby, along with her brother of course. When I would feel discouraged at my own health and well-being, when I would wonder what on earth was happening to me, I would just look at her, look at her brother and think–ah, but I have this!

IMG_7134She gives me strength, even as I will count my years with this disease by her years, it is a reminder of why I fight it every day. My mental battle is won when I look at her, look at her brother, and think, “I will be well for you two.”

I love the fact that as her early months passed, she became crazy over her brother. I love that spark of connection that exists between them two alone, and pray that it lasts like that forever.

I love that she has the best father a child could ask for, and the best brother a sister could ask for.

I love, I love, I love, and I thank Allah for the love we have, for it is what makes us human–“Whoever does not show mercy, shall not be shown mercy” (hadith).

I pray that we are blessed with a long life together, as a family, and that Allah brings us all closer to Him, and reunites us in Jannah, Aameen.

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I’ve been MIA from this place for so long. I now am no longer only “Abdullah’s mama” any more, I am the proud and grateful mama to Zaynab as well. The kids are now close to 3 and 1 year old, and our lives are still on the move as Siraj finds his niche as a new J.D., and I attempt to stay focused on my studies online with the AlHuda Institute.

My latest mama-project is providing brain-food for Abdullah by way of focusing on Qur’an memorization (and understanding!), learning Allah’s names, reading and loving learning. He’d love to go to school, but we have yet to settle down somewhere and we’re still trying to figure out how that will fit in with his Qur’an memorization.

Since Zaynab’s birth I have been battling an array of bizarre neurological symptoms which, after about 7 months of baffling everyone was finally diagnosed as Relapsing-Remitting Multiple Sclerosis (RRMS for short). This new beast is sort of like my third child (the black sheep of the family as it were)–always there, reminding me of its presence at the most inopportune times. Minus the love and cuddles of course (insert wan smile here). Fortunately I am doing rather well with it right now and have suffered only negligible residual damage from the attacks over the last few months. Al-Hamdulillah. I mention it because it’s become a massive part of my life, shaping my identity itself. How ironic too that my MS places me further down on the “road less traveled”, away from those fortunate enough to consider themselves “normal.” And yet… it seems that every where we turn, chronic disease afflicts so many that illness has become the new healthy, abnormal the new normal.

I don’t make any point of hiding my MS or pretending it doesn’t exist, and so I know it will come up here and there in these pages (makes a nice thing to vent about, ya know). So rather than blanching with terror if my disease comes up in petty conversation, I rather enjoy making a bit of dark humor out of it. Like if I forget something I’ll joke that perhaps a few neurons just died off or something… When I was first diagnosed I was like, okay now, I gotta go to a support group and learn the secret handshake! As sucky of a disease that MS is, it fortunately doesn’t suck too bad for me (yet!) so I am thankful for that. And I get enjoyment, actually, by keeping up with all the latest MS news and research (I’m a geek through and through, in sickness and in health!).

So–that’s basically in a nutshell, what occupies my time these days–Abdullah, Zaynab, AlHuda classes, MS… in that order I suppose 🙂 Once we settle down I hope to get back to teaching part time from home, which I had been doing until Siraj graduated.

We’ll see how much time these kids give me for my writing, but for now I thought I’d come back to this little nook of mine and spruce it up!

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