“The scale says 65 pounds,” the physician’s assistant says doubtfully.
“Well, that can’t be accurate,” I say. “I mean, I know I’ve lost weight, but not that much.”
Molly agrees, from her spot on the right side of my wheelchair. She is my visiting nurse, and has been helping the PA move me back and forth so they can get a giant sling wrapped around my body. Every time I’ve used this machine, the PA says the same thing.
“This was donated, and it is a $10,000 piece of machinery, so when it goes, we’re out of luck.”
The tarp-like device is attached to a hook in the ceiling and when the PA presses the button, the whole thing rises like a thick uncomfortable hammock, with me trestled inside on splayed legs. The first time we seem to near an accurate reading, but then the ties on my boots get caught in the wheelchair, and the whole thing has to be redone. Twice more they lower and lift me, like we’re at a construction site instead of inside a hospital bathroom. There’s a bruise on my leg that I can’t see, but I’ve been able to feel for months, almost like the inside of my thigh is just rotting away. Every time I go up, my leg turns to painful mush. But I really want to know what I weigh, so I don’t say anything about the mush. After we get two 65-pound readings, it seems clear the exercise is over. That maybe I’m the one who has finally broken the machine.
That is the beginning of an ALS clinic appointment.
After that we go into a small windowless room, where my vitals are measured. The walls are painted light blue with fluffy white clouds, which has what I assume is the opposite of the intended effect. I always want out of that room as soon as I get inside.”Your blood pressure is a little high,” says the PA.
“It’s probably from going up and down in that machine so many times,” I reply lightly.
Molly helps me fill out a survey about eating habits and attitude towards a feeding tube. My favorite question: Do you think getting a feeding tube would make you feel less sexually attractive?
The doctor comes in, which I wasn’t expecting, as I usually see him toward the end of my three-hour visit, when I’m so ready to get out I can barely summon up enough energy to explain ainything about my current situation.
“How are things at home?” he asks, and a lengthy conversation ensues. The short answer, not great. There is the kind of fighting over silly parenting things that you would think you could transcend with so many other issues going on. But in our house, ALS is just another lens through which we see ourselves and each other, and it doesn’t take the place of the frustrations, of all the little slights and misunderstandings. Instead, it’s just a way to make difficult things worse.
The doctor tells me that’s not true for everyone, that some people seem to do really well in their relationships despite ALS. He admits that those couples are usually men as patients and women as caregivers, that often they don’t have young kids. “I would be terrible at it, at being a caregiver,” he says, and I find his honesty validating. This business isn’t for just anyone, and it doesn’t matter what you think you signed on for, because there’s no way anyone sees this coming.
He asks about Scarlett, and I cry. It’s hard to get the right words out in that little room with the depressing phony clouds. The doctor runs his hand over his stubbly beard and leans back. He wants to help, he wants to make things better. He wants to go grab a beer with Rob. He asks if we can please find a happy ending for this appointment, and then we all laugh at him for using those words.
I briefly see the respiratory therapist about getting a suction for the nose I cannot blow, and the occupational therapist, for help with a wheelchair that is increasingly hard to drive with my weakening right arm. They both have answers, short-term though they may be. I’m supposed to see the physical therapist too, because my shoulder and back are hurting at night. But at this point, it’s been 2 1/2 hours, and I’m done. I tell them that unless the PT is going to say something absolutely amazing, I would rather leave and have lunch. So I do.
Molly and my assistant Johana and I walk out together, and I realize that I’m OK, which is not how I usually feel after clinic visits. Normally, it takes me a week to dig myself out of that heavy, airless space. But it’s been over a year since I’ve been to the clinic, and it turns out there’s not really anything they can say to make it better or to make it worse.
Maybe I’m more in control than I think.
Please consider donating to ALS research. #whatwouldyougive
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Happy ending! Lol. Thanks for making me chuckle today.
You, my dear, are in complete control. ALS is clearly not who you are. And parenting is tough, no matter what your situation. Plus, you are sexy. Always.
You’re the best!
Sarah, your ability to give us all a tiny insight into what a clinic visit involves is amazing.– “turns out there is nothing really anyone can say to make it better or make it worse”. Wow. For the short term, I’m hoping they can get a better weighing device and more uplifting decor. And something to make that painful bruise and so many other aches and pains less misery inducing. Come on people. Sarah could use a little break!
Love you honey.
Clinic is always dreadful! I only go when I want something from them… New Wheelchair. different meds,. ect. ..
You definitely are in control! Love reading about your experiences. As of right now I look forward to my visits at clinic. Long yes, but the times goes quickly and there is so much caring and encouragement that I leave there feeling decent. I’m sure that will change at some point. However, if it were not for my doctor and clinical research nurse I would not be participating in advocacy meetings. For now I am grateful.
Your courage and grace humble me. And somehow even make me smile. Best energy towards you.
On the day that I received my diagnosis (in 2011), the doctor suggested that a good way to spend the remainder of the day was to go shopping! The next two visits she cried over her own medical issues. The time after that, I waited 2 1/2 hours to see anyone and finally left. I went to a different clinic at a different hospital after that where the doctor looked at me with her head cocked to the side and said “you have ALS and there is no cure”. That’s all she said. I returned to the original hospital, which by the way is Northwestern in Chicago, only to have the doctor tell me I am fat! This was almost three years ago. Who needs that? My quality of life is decidedly better without clinic visits.
Xo
My heart aches so much reading this and get my admiration for you and how you still ove forward literally astounds me. You are such an inspiration to all of us still figuring out how to navigate this disease. Thank you
I think your clouds floated to Delta, Colorado for they are currently in my doc’s exam room #B. I will always think of you now when I see them!
Dianne
Sarah, your blog today has a sting. I feel it all the way across the country. That’s of course a testament to your wonderful writing. Couple of things. Shocker that women are better at being caretakers to sick men, right? And did they really ask the question about the feeding tube? You had to chuckle at that one. Thanks for sharing your blog – sending you lots of positive energy from Philadelphia.
Sarah,
I have been reading you for a while now, and I feel like I know you. My niece, who is 59, has ALS. She was diagnosed in 2013. I am her aunt, but more like a sister since I am only 7 years older. My niece goes to her clinic tomorrow, and so many of the physical things you describe are what we are seeing with her. But, like you, she faces ALS with courage and a sense of humor. She always makes all of us who are with her feel just happy to be spending time together. I just want to say I so admire your courage, and love to read your blog–I have happy and sad tears when reading. Just so blessed to kind of feel like my family knows you. Know you are making a difference for so many people, Sarah.
love you for sharing your humor, pain, and insight.
Seriously?? Someone should make a tumblr about all the idiotic things that happen at ALS clinic. The FIRST question I got at my FIRST clinic appointment was whether I had a will. The feeding tube question is funnier, but only marginally
Love your writing as always!!
Sarah,
Thank you for writing about your sharing your experience, I felt like it could have been our own experience. My husband, Matt has ALS for 16 years. We stopped going to clinic years ago, I guess we felt like we had outgrown it, and it wasn’t worth the trouble anymore. When anyone ask how much does he weigh, I always say “He feels a pound heavier or, the same as last time you asked me” What I want to say is, how the “h- – - -” do I know. The other great questions that still are irritating, “How tall is he?”, and phone calls where someone request “May I speak to Matt” for some reason, that question still hurts, and it makes me angry. I respond “No you can’t speak to him” !. God bless those strangers who are willing to stay on the line after that.
Praying for you and your family,
Shartrina
I have been following your blog the last few months. Was diagnosed Dec 2015. I am a retired RN, a Mother of two, Grandma to three Grandsons ages 4,7, & 11, and married for nearly 50 years. The first clinical we went to, we were looking for information , and very hopeful. After that, I started to resent them? It seemed to me we were there to document my decline? It seems we are just there for them to gather satisticss about our decline for their research? Everyone was nice & polite, why does it make me so angry, and resentful??? I want to focus things that I can do, and be more positive. I am not blind to what will happen in the future, believe me, I am aware what ALS does to those who have the disease. Your blog really made me feel better about clinics—-it isn’t just me!!!! Thank you so much for being our voice—-Love you for being you!
Wow. I know my situation was with my mom’s PSP and not ALS, but you bring back memories. Stay plucky and in charge! Your perspective is astounding and so is your ability to essay it.
Sarah,
Yes, always love reading your posts. You have a gift for describing the reality of ALS and sprinkle it with humor. Thank you. Know you and our son Jason have become good buddies and want to thank you for that. You keep each other going and give each other . I continue to be amazed at how you, Jay, and our daughter in law, Melissa continue to have a positive attitude in the midst of this disease. Love you for that.
Does a feeding tube make you feel less sexy? If someone got paid to write that question, I have to wonder where their brain must be. Probably not there. Love to you & yours Sarah. <3
Hello Sarah,
I just went to my friend’s last ALS clinic visit, and I was depressed shortly after. First, they waste too much time. I think they could do most of the appointment by skype, and any of the physical parts of the appointment, such as the respiratory therapist interaction should be in person. Including driving time, the day ended up being a five hour day. I have so much more to say… I’ll continue later:) take care!
My husband passed away of ALS several years ago. The thing that got me most at Clinic was the social worker. Let’s face it, we all know it is a fatal disease BUT we don’t need to hear it from them over and over. My husband’s last visit the social worker said “If you want to travel, you better being doing it now.” That upset me so much. Fortunately, the main Dr. at Clinic was awesome. Very caring and was great with the patients. I was hoping that things had changed since then. Guess not!
I love your newsletter and am astounded by your strength and grace.
I never comment because I’m not good with words. I grew up in Oak Park, and remember you as my classmates pretty older sister. I know Physical beauty doesn’t (or shouldn’t) matter, but with every post of a new photo that’s still the first thought that comes to my mind… Liz’s pretty older sister. Thank you for the raw honesty in your writing, and for sharing how important it is to fight for something, even when so many factors fight against you.
Hi Sarah,
You are a damn strong woman! I am impressed with your honesty and openness about living with ALS, though I hate that you have ALS to begin with!
As a Registered and Licensed Dietitian, this post caught my attention. I know you are not currently getting a tube feeding, but was wondering if you consume or have considered consuming any oral nutrition supplements? Like Ensure, Boost, etc. Or take Juven? Only if you are interested, I would be happy to share some evidenced based research on how these over the counter oral supplements can increase lean muscle mass, reduce risks of infections, wounds, etc. You may already have a Registered Dietitian on your healthcare team, but if not, they would be a great person to add. I promise I am not trying to sell you vitamins, herbs, or anything like that, only to share legitimate info on how to keep your muscle mass up. Sincerely,
Ashley Holloway, RD, LDN