Accepting ALS

IMG_6603

Most of the time I am able to accept the challenges that life throws my way if I have time to process my thoughts. Talking things through with Mark, our kids or others is also very helpful. Since my diagnosis, I’ve had some time to really think about my disease verses other diseases. ALS is a shitty disease but I think it is the right one for me because it is giving me time to celebrate, mourn and adjust.

First, I think I have been surrounded by the right people to help me get through my struggles of sadness and weakness. Listening to those people have helped me understand that I am not the only one suffering, most people are in some way.

Second, this disease has given me time to try and figure what I want to do with the rest of my life. I have had some of the most meaningful conversations with people I love and I’ve been gifted with quality time with so many family members and old and new friends. As this disease progresses I’ve had time to mentally adjust to the changes that are happening in my body. Some of the adjustments have been more graceful than others.

The struggle I am trying to overcome right now is having someone feed me. I had a major breakdown this week while Kelly and I were sharing cheeseburger soup together. The liquid and the chunks in the soup play havoc with my swallowing. The two consistencies no longer mesh while swallowing and cause me to choke, which is scary, so Kelly tried to make it easier for me by pureeing my soup. Even though it looked awful, the taste was still good. I took a couple of bites and started to cry, not because the soup looked like shit but because I was physically exhausted from raising my arms to my mouth. Kelly offered to feed me but instead we both just cried.

After a few days of thinking about having someone feed me, I am finally giving in. I don’t want to waste my precious time worrying about something I have no control over.

IMG_1058

God, grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference. Living one day at a time; Enjoying one moment at a time; Accepting hardships as the pathway to peace; Taking, as He did, this sinful world as it is, not as I would have it; Trusting that He will make all things right if I surrender to His Will; That I may be reasonably happy in this life and supremely happy with Him forever in the next. Amen.

Reinhold Niebuhr

Advertisements

15 thoughts on “Accepting ALS

  1. Rosemary, you are an inspiration. I have spent most of the last couple of years caring for my mom in my home. I have lost direct contact with many “friends”. It was hard changing roles with my mom and being her care giver, nurse, etc. It was hard on both of adjusting to the changing roles, but it was a blessing too. She had done it for her mom and I learned from her and just reminded her of that. You and your family are in my thoughts and prayers .

  2. You are so right! ALS is a shitty disease. It breaks heart that the sweetest person I have ever known has it :(. I think of you often, pray for you daily and love you always, Cuz!!!!

  3. It seems we spend our youth believing we control the world around us, only to realize we control nothing but ourselves, then, we have to let go of THAT control, too.
    There’s something profound and eternal in that, and I have no good idea what it really is.
    Rosemary, I can only hope I’m a fraction as genuine, honest, and gracious as you when the time comes to let go of all this. It may be small consolation, but, you’ve become our pioneer, a sort of unplanned leader into the unknown. I’m sure it’s not what you’d hoped for, but, thank you for doing it, as wrenching as it must be.
    Most people seem to cover their eyes and hope this all goes away, but you…you’re leaving a trail, clearing a path, calling the directions back to us. You’re an explorer. Whatever you find out there ahead of you, I pray that it will be infinitely worth the journey.
    Thanks for leading the way.

    1. Thank you for saying exactly what I’m feeling…..
      Every day is a new ‘adventure”……& we treasure each moment, each hurdle, each kindness, as well as heart-break…..thankful for family, dear friends, medical care, faith & hope/ laughter & tears…. to help on our journey…..

  4. Rosemary I am in awe as to really how strong you are. I have known you for so long and have always known how much of a caring and giving person that you are. Lately by reading your blog I have discovered your strength. Not too many people would share their struggles as you have. To me you have been a God send. I love you my friend

  5. Rosemary,

    I say very little to you because I feel so inadequate in my ability to say anything that might be helpful. You show so much grace and I curse this disease for you. However, let me say from a person that fed my own dad (yes pureed food) for years and later individuals with Alzheimer disease, coming from the other side, it is an honor to help and yes feed those that can not do for themselves. Never be embarrassed, you are giving other people a gift. I love you. Jac

  6. Rosemary you are such a strong person. The ability to talk and express what is actually going on at every level of the daily moments of life. It is inspirational as well as insightful. When I brave the stairs soon we must meet. I love you and yours. I do not have access on the IPad to hear Chad ‘s son’s sing a debut. We will need to view that.

  7. Beautiful message and you are equally the same! As God walks beside you each day and helps you process each challenge, my prayers and heart are with you dear friend. And I love you. Jill.

Comment on this post.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s