The Emotionality of ALS

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Once again I apologize for my language but today was another fuck ALS day.

For the past three weeks my emotionality has been peeked and I have been crying a little more than usual. In fact, I’ve been crying so much that we’ve been calling Mark “Fetch” because he is always fetching tissues for someone, usually me.

But before you start to feel sorry for me, please stop because emotionality is a symptom of ALS. In fact, crying, laughing and yawning are all part of this crazy disease. Also, if I laugh at an inappropriate time, like in church when Kelly pulls out a used tissue from my pocket and gives me a dirty look and I start laughing, it’s the ALS. Some day I may have to excuse myself from church altogether because of laughing or crying too loudly.

Today was a tough day for me. Mark, Kelly, my sister Deb and I visited the St. Mary’s ALS Clinic for the first time. It was a wonderful experience and the people were amazingly helpful and resourceful. The clinic part of my day was good but the hard part for me was that we exposed my sister Deb to the harsh reality of my new life during this appointment, her first ALS appointment. Emotionally, I was not prepared to look at her during my appointment because I was sad for her and I. I was sad for all of my siblings and Mark’s siblings. Deb was strong throughout this five hour appointment but I wasn’t, not today. Today I embarrassed myself with all of my crying.

The greatest part of my day at the clinic was that they gave me a new medicine to help me control my crying, laughing and yawning. Too bad I didn’t have it before the appointment, because poor Deb saw the ugly part of me.

Deb,

I love you and thanks for spending the day with us. I know our strong and loving bond will never change no matter how much I cry in front of you.

Love,

Rosemary

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18 thoughts on “The Emotionality of ALS

  1. THANKS for posting everything whether good or not so good/ tears are very healing……
    thanks always to Mark also!!!!!
    Our prayers and tears are always with you and for you & your whole family!!!

  2. Dear Rosemary,
    I don’t know you and you don’t know me, but I stumbled upon your blog a few weeks ago and have been following ever since. A long time ago I worked at a nursing home and helped take care of young man with ALS. My brother worked at the nursing home too and one night he sat us down together and read us a letter from his sister. He expressed how important it was for us to love each other and watch out for one another. My brother and I were both transformed from this wonderful man who still managed to maintained such a great heart facing such a difficult thing. I see the same thing in all of your blogs posts. It inspires me to notice the little miracles in each day, take more pictures, and go outside more.
    I can’t imagine how difficult it is but thank you for writing about it and sharing your thoughts with us. Even the ones about crying.
    Thank you. You inspire me.

  3. Rosemary I want to start this by saying how sorry I am that you’re suffering with this illness….I am always amazed by your honesty and the emotion that you put in your writing…it’s so real. I’ve been reading your posts for several months now and feel like I
    know you better .So I’ll share with you……my daughter Nicole has MS….and I can relate when you
    have your “fuck ALS” days….cause we have “fuck MS” days….and we thought we were
    the only ones….go figure……so take care and know that you are covered in prayer.

  4. Rosemary,
    You are just so inspiring to all of us. I love your laugh, yawn, cry, and smile. You are awesome and many people look to your blog for such hope in life (whether or not you know it). I love you guys. I talk about you to many. I pray along with hundreds if not thousands of people for you because you are one of a kind ~~~ and I Thank My Lord Each Time I Think of You!

    May He Hold You in the Palm of His Hand Until We Meet Again.

    Love you Friend,
    Jeannie

  5. I don’t know Deb well, but I’ve known her a long time and she strikes me as just the person you want by your side when the chips are down, strong yet compassionate. A fighter to the end yet respectful of your wishes, I know it isn’t “easy” for her, but as she said, she was honored and I know that is true. There is such strength and love in your family, what an amazing bond to be blessed with. Hugs to you both!
    Lynda

  6. Well, I can only say I agree with all the other posts here Rosemary. For you- I hope the new med help but you could never be ugly! Love you!

  7. We’ve never met – and I’m not at all religious, but… In my experience, a church is the best place to be loved while laughing or crying. I know it might be tough to feel out of control sometimes, but being out of control while surrounded by a community who loves and supports you can be amazing.

    And thank you for sharing this journey – your strength, passion, and the love you have for the people around you is inspiring.

  8. Rosemary:

    You certainly do not owe any of us an apology. If truth be told I don’t know how you stay so upbeat and positive as much as you do. You’re an amazing lady, and a truly a beautiful example for all of us in how well you are handling all of this. I don’t know if I could do it. Strength in times of struggles are not my strong suite at all. There have been times when I struggled with life in general, I did not handle things well. I hit rock bottom, due to some unforeseen circumstances. But through God’s Grace I am still here and dealing with life’s curve balls. Although I am a much better person having gone through what I have. I guess my point in all this is stay as positive as you can, it’s okay to have those down times, it’s a natural process that we all go through when dealing things that seem unfair. For me it is unfair for you to have ALS…..you’re such a GOOD person, who is so strong in her FAITH. Maybe this is God’s way of making you our Saint here Muskegon, in the way that you to write us all such wonderful sentiments and teach us all how to be FAITHFUL and STRONG in hard times, as well as good times. Hopefully this last remark doesn’t sound contrite. I apologize if it does.

    Rosemary your blogs ground me and cause me to give thanks daily to Our Lord. Thank you for all of insight in your experiences. I Love reading them and I love you :)

    Fondly,

    Vickie

  9. Sorry for your reality stepping stones at the St Mary’s clinic. Hope you know that many of us were with you in spirit during your visit. Rosemary, truly your tears are God’s way of helping you cope, he is watching over you. You guys have a great trip and be safe. All our love from China.

  10. Rosemary, I pray each day for you, especially today my friend. Your blog cheers me up, even if you cry. So I ask Jesus and Our Blessed Mother to hold you tightly.
    I love you, Jill

  11. Rose Mary did you see Dr Gelantis (miss spelled) wonderfull doctor and person and extremly smart…. My brother sends you his best wishes and said to tell you his dr at Mayo Clinic suggested mega dose of vit c. every day.. I wish for you the best God has to offer.. Love you and miss you Lou B

  12. Good morning my dear sister and family,
    Although it was heart breaking to see you struggle with the tasks they asked of you yesterday I want you to know that I feel so very HONORED that you allowed me to tag along yesterday.
    Please know that you all are such an inspiration to not only me but to everyone that has crossed your path.
    We are all so truly blessed to have you and your family in our lives and for that I am most grateful.
    Enjoy your trip with Mark, Corey and all the people you will meet along the way.
    I love you so very much!
    Deb

    1. Rosemary,
      Please don’t ever feel embarrassed about your crying and laughing. My only thought (and I’m sure this goes for everyone) when you cry is how very much I wish I could take it all away. When you laugh (even when not appropriate) is so beautiful and can only brighten the mood of everyone around you. It’s just like you to be worried about everyone else. STOP IT!
      Have a great trip and hug our Nephews Corey and Christopher for us.
      Love you guys.

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