Posted on by MyBeautifulMigraine

Text to my dear friend in Hospice

I’m pre-apologizing for the novella… no need to read it all if it’s too much and no need to respond. I know you’re weak, I know your time and energy is precious, and the LAST thing I want to do is “make this about me” >>b o r i n g<<

But my dear friend,
There’s something I want you to know.

I’m so so sorry I wasn’t always there for you the way I wish I had been. I hate that life—the kids, all the “stuff,” and my own chronic health struggles—so often got in the way. I’ve thought about that more times than I can count… throughout all the years we’ve known each other. You were this special anchor to my new home in Austin 14 years ago, and a light that helped me so much… I was NOT all alone! I found a real life person – and a FUN one too – with a twisted sense of humor – like my own  – with the same struggles I was navigating!

I remember standing with you outside Relax the Back in the Galleria for US Pain Foundation – you were an Ambassador – I orbited your stardom!⭐️ Was there nothing she could not do!?

PLEASE DON’T HEAR THIS AS GUILT. Hear it as LOVE and ADMIRATION.

You are a KINDRED spirit to me – a sister from another mother. From the moment we met, I felt that. Your kindness, your determination for advocacy and community, your incredible creativity, your gentleness, your strength, your heart… they’ve always meant so much to me.

And now I’m thinking of how you would spend hours daily with cupping, stretching, fascia work – my husband and I use our little Ashley Black tool you recommended so long ago… although truthfully, husband uses it way MORE than I! 😂😂 And I’m thinking of our chronic illness group meetings at the library… especially our little group laying on yoga mats enjoying a sound bowl performance🙌🏼 Sound bowls! The stories I would share with husband: she said this today, and we talked about that, blah blah blah. And then our group lost Betty… and you were THERE for her… always showing up – just like my sweet friend always does❤️

We weren’t exactly the same… you needed to lay in a very special, precise way in bed every night while I curled up in a side fetal position always with ice head wrap and went out cold into promethazine 10 hour mini comas😂

I really HOPE you’ve always known somehow, how deeply I’ve LOVED and ADMIRED you, even during the seasons when I couldn’t show up as often as I wanted.

Now I’m thinking of how I would tease you about printing out directions on PAPER instead of just using your phone’s GPS😂 and your PAPER CALENDERS – “Girl, just enter the appointment into your phone calendar!” 😂😂 and how it was always easier for you to call instead of text me… I miss those calls💔 I miss them so much (since you’re no longer able to speak) and I try to remember the last call… I know it was when you were pretty sure your diagnosis was bulbar ALS… and my heart stopped… no, NO, NO, not that, no…💔 I couldn’t be hearing this!

Thank you for being my dear friend. Knowing you has made my life SO MUCH richer, more inspirational… and I couldn’t be more grateful.

You have changed me forever, and I will carry pieces of you with me for the rest of my life. I will never say goodbye, because I will continue talking to you whenever you care to listen… I will ask your opinions and advice when I face questions – big and small. I will talk to you about your children. I promise I will not overwhelm them, but check in whenever they allow me. I will continue to stay a part of the ALS Facebook community you started… praying for the members and offering my support carefully. I may dream of you – feeling a sense of a little visit – I welcome visits! I will listen. And I WILL see you again because I don’t do goodbyes… you are simply too important to me.

I love you.❤️

Original art, Jennifer Landis @composedchaos_artbyJen
Posted on by MyBeautifulMigraine

Bulbar ALS; prose for my sweet friend’s horrible journey

My dear, dear friend.

It has been ages since I’ve heard your voice… now it comes through as an AI echo from your phone.
This illness has robbed the world of your laughter—your quick, off-the-cuff wit that always landed just right for me, dripping with satire, always dark and exactly my taste.
It has stolen your energy, your strength, your zest.
It keeps taking and taking, and I watch you grow smaller and smaller before my eyes.
You are hurting. And it breaks me as it breaks you.
This isn’t natural. It isn’t right, or fair, or just. It makes no sense. It feels against everything life is meant to be.
Even in the chaos of my own life, my heart makes space for you—always.
When I hold my grandbabies, you will be there.
When I dance with my son at his wedding, you will be there with me.
When I travel and adventure with my husband, you will be with me. I will carry you into all of it.
Your daughter will always have a mama bear watching over her—fierce, present, and unending.
Always a gifted gardener, I will see you in every flower, always.
Your garden will forever be in bloom.
And your extraordinary artwork—your beautiful creations—will outlive all of this.
They will hang in special places, rest in quiet spaces, and carry pieces of you into the future…
proof that you were here, that you mattered, and still matter, and that you created beauty nothing can take away.
I will be your voice when you cannot be. I want to be your voice.
And someday, the suffering will be over.
There will be peace—true, lasting peace.
No more pain. No more struggle to breathe, to speak, to laugh.
Just freedom. Just love. Just you… whole again.
I am not ready to lose you, my dear, dear friend. I will never be ready.
But when you are ready, I will honor you. I will not say goodbye.
I will only say: I will miss you… and I will see you later, when we are both whole again, laughing forever in perfect peace.

*What is Bulbar ALS? Bulbar-onset ALS is a rapidly progressing form of Amyotrophic Lateral Sclerosis where nerve cells controlling muscles in the face, throat, and neck degenerate first. Initial symptoms often include slurred speech (dysarthria), swallowing difficulties (dysphagia), and tongue fasciculations, typically progressing faster than limb-onset ALS. (ALS Therapy Development Institute)

Key Aspects of Bulbar ALS:
Initial Symptoms: Trouble swallowing, excessive choking, hoarse or strained voice, reduced speech volume, and tongue twitching.
Progression: It often advances quickly to involve limb muscles and respiratory muscles.
Prognosis: Generally associated with a faster progression rate compared to limb-onset ALS.
Management: While there is no cure, treatment involves multidisciplinary care for symptom management, including speech therapy, feeding tubes (PEG) for nutrition, and non-invasive ventilation (NIV) to support breathing.
Medications: FDA-approved drugs like Riluzole and Edaravone may be used to modestly slow disease progression. (ALS Therapy Development Institute)

Bulbar ALS, unlike other types, directly affects the ability to communicate and eat safely, leading to a higher risk of choking and pneumonia. (Medical News Today)