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Incurable Hope

It has been a long six years trying to find a diagnosis. Based on my symptoms and the way they have progressively worsened, we’ve known it was some kind of degenerative neuromuscular disease, but we haven’t quite known the prognosis. Early on it was thought to be MS, and I was able to work through it, making some modifications to how I did things, but vastly able to continue life as normal. Things continued to decline though, and I found myself losing the strength and endurance I needed to continue working as a paramedic. This is when I cut back to part time paramedic, and also took an office job in organ donation. As fulfilling as that was, I eventually found myself no longer to make the drive, or even remain upright for the hours that it required. Eventually I had to face that I could no longer safely work in any job, and I needed to save what little energy I had for my family and friends.

It’s been a frightening journey at times, especially with the unknowns, but we are beginning to have some clarity. A recent brain MRI showed significant damage to my brain stem, which is responsible for many of the automatic functions of the body. This information shed light on why I was having symptoms related to that area of the brain, like trouble regulating my breathing. All of these pieces started to fit together and pointed to Multiple System Atrophy. In some ways this was a relief, as the contenders like ALS have a very short length of survivability. MSA comes with its own fatal prognosis though, typically within 5-15 years. Being at year six, I already feel blessed for the time I’ve had and continue to enjoy. I’ve tried to stay in the moment and be continually grateful, although I’ll admit that sometimes my attitude stinks and I fall into a grumpy state of forgetting the gifts I’ve been given.

I know that God knows my heart and hears my prayers, and those of so many who love me. I know that He can take this from me if He chooses to. But even if He doesn’t, I will still choose hope and thank Him for every moment He allows me to have here.

I hope you’ll help me, dear readers, to continue to find Hope and Grace in the day to day. I know that it’s there, and sometimes I just need help to lift my eyes up for it. Please don’t treat me differently; let’s laugh and dance and do big and small things without fear of the future. I’m ready for today, how about you?

Please leave me a comment, it lets me know you’re listening!

28 thoughts on “Incurable Hope”

  1. Love your smile! I think the longer I live the harder I see how life can be. There is so much we don’t get to choose. Yesterday I saw a new type of weed in my front yard. It was beautiful and it made me laugh. Keep looking at the beautiful weeds. Love you.
    jon

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  2. You have such a positive outlook. Keep smiling and enjoying every day, every minute, all the laughs and memories because you deserve the best of them all. We all have grumpy days, even when we are not faced with the challenges that you are facing. I am also dealing with my own medical issues, not near what you are facing, but enough that makes me wonder why. We have to keep the faith, hope, and just taking advantage of every moment. 🙂 With or without medical issues, you never know what tomorrow brings. So take advantage of what we have. 🙂 Sending lots of positive thoughts, prayers and hugs!

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  3. You’re a fighter and you always have been and you’ve never let anything stop you from fulfilling your goals for you or your family and you have raised some amazing kids. Amazing woman!! Many prayers! ❤️ Keep the Faith and walk proud of the woman you are!!!

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  4. I don’t know you personally but if you are anything like Miss Micah you are strong and your faith will carry you. God is good and I am listening and praying for you. God Bless and stay strong and stay positive. You are very special. Hugs and prayers.🤗🙏🤗🙏🤗🙏🤗🙏

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  5. I will always be your cheerleader! I’m so proud of your bravery and commitment to your family and friends. We are all here in this walk with you! You are forever in my prayers always❤️

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  6. All I can say right now is to : notice every butterfly, smell the outside air, (but stay of the sun til it cools down, smell the flowers, have flowers every day in your house, got a quilt, lay under it and enjoy who made it, think of your friends one by one and only happy memories, talk to everyone in your family, hug and kiss your family, as needed. I love you dear Hannah, always praying for you, hubby and kids. Hoping for more years with you.

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  7. Hannah, Not knowing a diagnosis is the WORST! While this diagnosis is NOT what you had hoped for, God is in even this. Live each moment to the fullest: NONE OF US have a guarantee of long, healthy lives. PRAYING for daily coping grace. HE IS SUFFICIENT!!

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  8. Reading this and thanking the Lord for your testimony. He is doing big things through you for His glory, and He will reward your obedience in trusting Him. Thank you for sharing your story.

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