It’s been pretty well established on this blog that I spend most of my time sitting. That’s been true for about four years now, and as you may have read in any number of reputable publications, sitting all the time brings with it many health complications. Let me be more clear: I have a hemorrhoid. I apologize to those who feel this is too much information, but my little bottom feeder and I have been together for a while, and I named him yesterday so I thought I should introduce him. Not visually, don’t worry.
His name is Vance.
Web MD says that hemorrhoids are swollen veins, and that entire sentence makes me want to throw up. I think I just object to the words swollen and vein in such close proximity (both to me and to each other). Right about now, I’m guessing that those of you who were thinking I wonder when Sarah will write a new blog post are instead thinking Wow, I wish Sarah had kept this one to herself. But I simply couldn’t keep the wonder that is Vance from gracing the electronic pages that will live on after I’m gone.
Web MD also says that three out of four adults get hemorrhoids, so I’m done talking about Vance now. I was really just using him as motivation to write. Usually when I do this, I delete all of the “motivational writing” and spare you the inner workings of my “process.” The word process is in quotes because if I’m using swollen veins as a writing prompt, I think we can all agree that I have no process. Or any dignity.
A lot of things happen to your body when you have ALS and many of them have been surprises to me. I knew that I would lose muscle and movement, but I wasn’t necessarily aware that I would shrink to the size of a child. My arms are so thin that it’s tough for medical professionals to get an accurate blood pressure reading, even when they use a children’s cuff. When my caregiver lifts me into the shower, I can see every vertebra in my spine. They are so defined, it seems as if someone has buried golf balls under my skin. I knew that my voice would probably begin to slur and become unrecognizable. But I didn’t expect that even without a slur, I would often be unable to communicate because my voice simply isn’t loud enough. And because I can’t easily complete a thought without stopping for breath.
I haven’t tried to sing in a very long time, though it’s something I love to do. On Saturday night, I tried a bedtime song for Scarlett and so many of the words came out as whispers too low for her to hear. Everything in my body needs to be pushed or pulled. I force air and words the way a machine might, even as its batteries run low.
Scarlett had a singing performance this weekend, and her music school is not accessible, so Rob carries me down a flight of stairs to the stage. Seats are saved for us in the front row, and mine is a borrowed wheelchair, the kind that folds up and weighs nothing and makes me trade comfort for convenience. But I don’t care. My daughter and her three friends who make up the band took the stage and stood squarely in front of their microphones, launching into the Tom Petty song Learning to Fly. They each sang beautiful solos, Scarlett’s gravelly voice conveying her lines like a secret message.
And it’s possible that message was: Mom, please don’t introduce your hemorrhoid to the Internet.
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hemorrhoids schmemorrhoids. you haven’t lived until you’ve had abscesses, fissures and fistulas. good news is, botox is free. bad news is, it’s for your ass.
I have them too; note “them” implies multiples. I don’t name them. And I hate it when they bleed. ALS does so many things you don’t expect. It helps to have humour, which you have plenty of, and people who love you, which you also have plenty of.
Good on you for living so well. Please pass on my non-regards to Vance.
Hi Sarah…I am Jeanette Kay’s Mom, I so admire you you sense of humor, your strength and Failth. You are giving Scarlett so many wonderful lessons to carry her through life. I follow your blogs and I have lead others close to me who are living with ALS to follow you also. I think God still has plans for you to carry on with…He will be there to guide you . With sincere blessings Sherry Swanson
I WAS waiting for a blog post from you and, as usual, you did not disappoint. I laughed out loud. Thank you for your candor, humor and perspective.
So glad that you got to hear your daughter sing Sarah da da da
I look forward to your posts, even this one! Count me among the 3/4 Americans! Have you thought about a daytime vent? It’s on your face but only under your nose. Look up the dreamwear.
best, scott
Name it. Claim It!!! Hemorrhoids are the worst!
We named my mom’s coloscopy bag (shit collector) Tish and had to mention it at every DR appt. The doctors and nurses were not nearly as amused as we were.
You are amazing – hemorrhoids and all!!!!
Vance (Joy-less?) sounds like that really annoying guest that can’t take the hint it’s time to leave:(….
I’m glad you got to hear your daughter sing-i think we hear ourselves in our children, let her sing her heart out for the two of you!!! I remember being in junior high choir together, at Julian-weren’t we both the songbirds once? Do you remember? Love you lady take care of yourself.
I will never forget your solo from Phantom of the Opera! You killed it, up there on stage all by yourself. I was so impressed. Love to you and thank you for all the support.
I popped one of my Vances. Bled like a stuck pig.
love your humor – I have many friends for Vance. so glad you got to Scarlett’s concert. Andy had a solo in the 2nd grade musical and a kid in the chorus on the risers threw up during his solo and took all the attention. Love learning to fly!
So sorry you have to deal with any of this. Thank you for your thoughts and post, be well Sarah.
I’m just speechless about that Vance character- ouchy, for sure and he needs to leave! It’s a given that Scarlett would be as talented as her mama- and to pick a Tom Petty song- wow!
Love to you all!
Less is more… as your beautiful physical presence shrinks, your amazing spiritual presence grows and pulls us closer to you. I have followed your journey since the beginning Sarah… I thank God for leading me to you, and still pray for you, for a miracle for you, daily. God bless you Sarah. You are His best and we love
You are such an inspiration – thanks as always, Sarah!
Dear Sarah,
My name is Sandra Peisach and I live in Barranquilla, Colombia. I came across your articles a few years back and have followed you since. I am inspired by your courage and love your humor and look forward to your monthly blog. I find it incredible that with today’s technology I read your blog from So far away. You have a beautiful family and I only wish good things for you. God bless,
Sandra
Níl aon tóin tinn mar do thóin tinn féin – this is a Gaelic expression which is a play on words but literally translates to “There is no sore ass like your own sore ass”.
Love you my friend and thanks for making me smile always. Also…thank you for reminding me of some ridiculous Irish expression I thought I had long ago forgotten.
I love your humor and the replies you get from all over the globe are wonderful. It must be genetic. Love always, N
God through Jesus can heal you. I know because through absolute faith and trust in Jesus/God and Jesus’ healing power (as well documented while He was on earth), intense prayer and a couple of times while asking for healing while receiving the Catholic Holy Sacrament of Communion, I was miraculously healed of very serious illnesses, excruciating pain, and ailments 4 times. Jesus tells us in the Lord’s prayer that we can make requests from his Father God: some examples are, “give us this day… – forgive us our trespasses as we forgive… – deliver us from evil…. – (even) Thy Kingdom come Thy will be done….” are requests for Heaven on earth!
Pray, Believe and receive! God Bless.
There are so many things wrong with Elwood’s comment. This is nothing but bad theology. Faith is not optimism nor certainty. If I believed in your theology, then healing would be based on me, my works, and how much faith I have, and not in the object of my faith- which is Christ. Sometimes we just get sick. Even the most faithful Christian gets sick. Don’t just throw Jesus’ name around like He is a genie, ready to heal according to some virtue or merit we have.
Very specifically He came to save people from their sins. And from the judgment of God. Paul could not find healing of his ailment though he healed others and sought the Lord three times. The prophet Elisha who had double the Holy Spirit in the Old Testament did not go home in a chariot of fire like his predecessor Elijah. He died from sickness.
Elwood I’m glad you were healed 4 times over, but I haven’t been healed. But I have hope that God will deliver me from this present evil world, and bring me into His glory, though I don’t deserve it. My faith is in the blood of Christ, that He died for me. Whether I’m sick or whether I’m healthy. Whether life is going good, or whether it is bad. This is the real Christian’s faith and hope.
Amy M is so right! When a football player catches a touchdown pass or drops one in the end zone… Or a baseball player hits a home run or strikes out… We should give glory to God! He gives and takes away, blessed be His Name!
Sarah, thanks for your blog! I love your humor. I learn a
lot from you. I don’t want any Vance’s but feel inspired to accept what I am given… Blessed be His Name.