Subhanallah…I don’t know what to say

My mother has been having problems with pain in her throat and slurred speech for the past year. It has been getting progressively worse so she has been going back and forth to her local physician. They sent her to an ear, nose and throat specialist who told her they couldn’t figure out what is wrong. Finally, my mother became fed up and decided to head down to the Mayo Clinic for a series of tests. All the while she has been telling my sister and I that it’s “not that serious.” It didn’t matter though. We practically forced our way to the Mayo Clinic with her but all of the tests the doctors ran came back negative for the barrage of things they tested her for. The neurologist she went to see had one last sneaking suspicion as to what it was (but of course, she wanted my mom to see a collegue of her’s before resting on the conclusion.) On Monday they told her to come back for the results.

I was horrified to learn that my mother has been diagnosed with ALS or Lou Gehrig’s disease which is basically a fatal[!], progressive, neurodegenerative disease. There is no cure, it gets worse with time, the person loses control of their muscle functions, and they eventually die (most commonly from respiratory failure.) I could sugar-coat it, tell myself that things will be different (and they can if Allah so wills) but I also need to think about reality. Since my mom began experiencing the throat pain and speech problems it has gotten worse. When I talk to her on the phone I have to ask her to repeat herself sometimes. The doctors also noticed that her left leg is dragging a bit. (While we were at the clinic I watched her while she was walking and they are right). So how do I think about reality when the whole thing seems so unreal? I can’t imagine my mom in a wheel chair, with feeding tubes, and eventually dying. All of the research indicates that most people die from ALS within 3 to 5 years of their diagnosis. Some live longer.

This weekend we plan to have a family meeting, insha’allah. I am not sure how I feel. Subhanallah…

19 responses to “Subhanallah…I don’t know what to say

  1. ASA,

    Nothing I can say could ease your mind. The only thing I can do is try to encourage you and tell you what you already know. Our lives are already planned for us. We are just going along for the ride. We all will be tested. Some test are just smaller and easier than others.

    A hadith narrated by Abu ‘Abbas ‘Abdullah, says:

    “Remember Allah in times of ease, and He will recognise
    you in times of distress. What hit you could not have
    missed you, what missed you could not have hit you.
    Remember that victory comes with patience, relief comes
    with affliction and ease comes with hardship”.

    When I read this Hadith I think about reality. What is for us is truely for us and no matter what we do we cant run from it.

    Be sure We shall test you with something of fear and
    hunger; some loss in goods or lives or the fruits (of
    your toil) but give glad tidings to those who patiently
    persevere. Who say when afflicted with calamity:
    “Inna lillahi wa inna ilayhir raji-oon”

    “To Allah we belong and to Him is our return.”
    They are those on whom (descend) blessings from Allah
    and Mercy and they are the ones that receive guidance.

    The only thing you can do is make duaa for your mom. Be the best daughter you can be to her. Try to make things easy for for her. TRUST me family crisis can bring out the worst in people so try to make things easy for you as well; and more than anything remember ALLAH, SWT, he alone knows what you will need to ease your heart. HE will be your comfort when you feel alone.
    Think about the fact that NOW you have more support than you did before. You have a wonderful husband to help you through this. Imagine going through this alone.
    You have sibblings, at least your not an only child. I think about when something happens to my mom, IM IT there are no other children, I have step brothers but I am her only natural child. I have to deal with things by myself.

    I wish I could be there for you but I know youre in good hands:)

    Love for the sake of Allah

  2. I’ll keep you in my prayers. May God grant you, your mother and your family the strength to go through this.

  3. Salam,

    May Allah Cure her or Give her better.
    May Allah give her family patience and strength to get through this trial and He tries those He loves the Most.

    Alhamdulillah at least she has such a beautiful wonderful family to spend her time with.
    I’d say savor it. Savor every day, hour and minute with her. Let her grandkids (if any) pile up around her to hear stories while she still has control over motor speech.
    Ask her abou the Wisdoms of the world.

    My mother has been taking care of her ailing parents and in-laws for the past 15 years. I’m down to one paternal grandfather left. Some days you’d wish they go quicker as to not be in pain and other days you’d wish they’d linger on forever until you die before them. It very complicated the feelings that arise when you’re facing terminal illnesses.

    Just let her know how much you love her every day, in the end it will make you both feel better.
    May ALLAH help you all.

  4. Peace Queen. You will handle it with strength and beauty.

  5. Thank you all for your words of support. Insha’allah I plan to face this with as much courage and patience as I can. I don’t think this has emotionally registered yet. Logically and mentally I get it. It’s still unreal.

  6. Oh no… that’s not good news at all. I don’t know what to say either, except be strong, keep hope alive and we’ll all keep praying for a miracle.

  7. Salaams Dear:

    Hugs to you …

  8. Assalamu alaykum wa rahmatullah dear Sis,

    I am so sorry Sis, and my heart goes out to you and your Mom. May Allah cure her of this disease and make it easy on you and your family, Ameen. I know nothing will make you feel better right now, but I’ll keep you in my duas.

  9. My dear sister I am so sorry to hear this devastating news. I was actually in shock reading it. I think the brothers and sisters have said it beautifully above.

    I will keep your mom, you and your family in my dua. I have found that for some things that I have been going through lately it really helps to have a circle of trusted people around you. I joined a support group for those experiencing the same thing. Insha’Allah there there may be something online or based at a hospital or counseling center for family members dealing with this illness.

    You may not be ready yet but there is something about having people who can guide you through the process and who understand.

    May Allah (swt) comfort you through this difficult, painful time.

  10. I’m sorry to hear about your mother’s condition,

    One of my favorite aunts succumbed to Lou Gehrig’s disease eighteen years ago. When I first heard that my aunt having this disease I was shocked and angry. As a child, I remembered they talked about the baseball player( Lou Gehrig) having the disease, but it all just seemed foreign to me. The problem was noticed when her foot went numb. Maybe her foot is sleepy or maybe it may be diabetic related we thought. It took us nearly 8 months for a proper diagnosis to be made about her condition and we all were shocked. Lou Gehrigs?! no such thing, but it was a disease that we all had to come to grips with of her having.

    I agree with many of the posters that have written you. be strong and be there for her. God will not disappoint you. He will help you and your family during you most trying times.

  11. The Prophet (PBUH) Said: When Allah wants to be good to someone, he tries him with some hardship.” InshAllah sister things will get better, I saw my own father given a similar amount of time to live due to a incurable stomach cancer with Allah’s grace he is still here be string like u always are my good energy and prayers are with u….Sister Nasira

  12. My prayers are with you and your family.
    May Allah (SWT) gave you the courage to be there and support her inchallah

  13. I don’t think I could say anything that could make you feel better. I’ll keep your mom in my thoughts and prayers. If you need anything, please let me know.

  14. Salaam, I could add is for you to be there for those moments when she needs a touch, a word, a hug, medicine, food, prayers and all the other moments in-between. Insha’Allah.

  15. As salaamu alaikum sis,

    My heart goes out to you. May Allah make it easy for you and your family. You are in my thoughts and prayers for sure. -Chaun

  16. Sister, I’m so sorry to hear this. You and your family are in my prayers, and I hope Allah makes this time easy for you all. *hugs*

  17. My heart goes out to you… I pray for your mother and I hope you know that she will be getting prayers from all around the world from your discussing this on your blog. Remember at the hardest of hard times that there is always deen and always Allah.

  18. Safiya Outlines

    Salaam Alaikum,

    I can only imagine how hard this must be for you.

    May Allah grant you, your Mum and your family ease through this difficult time. Insha Allah, I will remember you in my dua’s.

  19. This posting is invaluable, I completely appreciated it, I’m going to be back for more!

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