Four years ago, I was told I was going to die.
Everyone dies. To know the mechanism of your demise, though, is a terrible and powerful thing. Oh, certainly, something else might kill me before ALS squeezes the breath from my body, but there is now a subtitle to my timeline, a definite path. The future is a language tainted with exceptions and qualifications.
I took the news and buried it deep in my chest that day, taking the bus home alone. I don’t remember what I was thinking. I remember tripping over a curb walking home from the bus stop. I remember wincing internally, absolutely certain that was going to be the catalyst for the meltdown to come. It wasn’t. I picked myself up, and thought to myself, “There will surely be much more of that.” I got home, looked around the house I had just bought, the house I would no longer get to keep, and wondered how the ever loving fuck I was going to break it to everyone.
My life is a timeline of things lost, now, a perverse sort of baby book in reverse. Vashti’s last unaided steps. Vashti’s last time putting on makeup one-handed. Vashti’s last time dressing up all by herself. Vashti’s last time feeding herself. Vashti’s last words. Vashti’s last breath, someday.
For now, I can still speak, and breathe, and feed myself mostly. I need help cutting food these days, a job my friends do graciously. It’s very sweet, even. Walking with a walker is still possible, but exhausting, and it feels more precarious than ever. I stay in the wheelchair when I can. I have the motorized one now, but no way to transport it (but I’m working on that!). My hands are just about useless; I type with two fingers that have very little strength left in them. I need two hands to lift a soda can to my lips. I bought a hand strap yesterday to put eating utensils in because I’m almost unable to grip them. Bladder control is almost completely a thing of the past.
But you know what? Fuck this disease. It doesn’t own me. I have to make allowances for its dumb ass, but it’s not who I am. I am still going to eat at all the fancy places. I am still hanging out with my friends. I am still working. In one week, I will have another birthday. I am still planning for a future, even if that future has heavy caveats.
Because fuck that shit.
Even four years later. Even knowing what it’s going to take from me. Even though it would seriously be so much easier to end it now, before it gets REALLY hard. Fuck that shit.
My saddiversary has come around once again, and it’s one more year I can give this disease the middle finger. It doesn’t fucking own me. Even after I’m a non-speaking, drooly, pees-my-pants useless lump of meat, it won’t own me. Even if I decide to take my own life before it gets that far, it doesn’t win.
One more year down. One more point for me.
Fuck yeah.
I’m very proud of you. Your translucent truth has inspired me to be brave❤️.
I cannot imagine what you are going through, but even more believable is your tanasity and strength.
Thank you for taking us on your journey may all of us be ever mindful of small blessings that come easily and frequent.
May your dining out always be special because you are there in just the moment. I hope I can master the art of doing this as you seemed to have mastered it with grace, confidence, and a devil-may-care attitude. Whether by force or deliberate choice matters little because life’s lessons are both.
I think of you from time to time as I now embarked on surrogacy and I’m throwing my guts up and peeing at the same time. In these moments I offer prayer and hope little acts of kindness meet you on the road. I often check your blog to see how things are with you. The good, the hilarious, the poignant, and the things this disease brings out.
Take the points, take all the points.
If anything you became a great teacher by being life’s greatest students.
You are loved unconditionally. You have made teachers from those learning from your example of continual fighting. As you cheer yourself on to face an enevatable hard end we all reach it though in different ways. Hopefully, we can cheer ourselves and others to do the same. As you have done.
I only wish I came across your words sooner. I have shared bits and pieces of your words with others.
I say this boldly as I realized what you were really going through, I decided that using my body for amazing purposefulness boldly allowed myself to do surrogacy. You are a part of my story and an amazing couple who got to have a baby because of your blog.
You have reached far deeper than you may ever know. My walk with God is stronger and I do meaner tasks with a more generous attitude because I see these small tasks as profound with this messed up disease.
May I say thank you not to this disease but for your willingness to open your heart and true opinions of the world around you.
I wish peace, grit, courage, and for those closest to stay with you on a very dark and scary journey. Let them know that as scary it is for them to see it so much harder for you to walk through it and you have no will except the attitude you possess.
Holding space for you today, my dear world changer love with deepest admiration,
Elizabeth
Oh. Oh my dear. Thank you for this. I am so, so pleased to think that I made some small difference in the world, but you’ve given me understanding of making a HUGE one. I am humbled and amazed. Your strength and resolution are …well, inspiring. You’re an outstanding person and I’m glad to know you, even virtually. You’re doing a damned amazing thing, giving birth to a whole new person to help someone else, and I am totally and completely in awe of the story you’re writing in your life. Thank you for being part of my story. I’m so grateful to know you. <3 <3
I’m holding space for you. You can email me if you want and if you want I would not mind chatting with you:)
I smiled reading that.
Yes, give this ridiculous disease the middle finger.
Fuck it!
Without minimizing your losses, I’m glad the progression of disease has been as slow as it has, and I wish you many more years.
<3 thank you. I'm very, very lucky.
Also i love the name you’ve chosen!