Post 2: Ev Goes to the Clinic
Ev Goes to the Clinic
The other day we had an appointment at an ALS clinic. It was actually like 2 months ago but ever since living in South Africa where people would use this phrase regardless of recency so do I. Anyways. I dread and look forward to these appointments.
When you have a progressive, debilitating neurological disease there is almost never “good” news at the clinic. I mentally steel myself so as not to become completely demoralized. It usually goes something like this:
These are the ways you are worse since last visit
Here is a prediction that is 100% guaranteed about the future horrible ways you will get worse
Let’s talk about more equipment and invasive surgeries that will alter your body
Wait here for other specialists to come in and tell you the ways in which your body is not measuring up to basic human abilities
Let’s do a suicide questionnaire because holy shit this is bad!
A smattering of tests: blood, urine, breathing, strength, reflexes, weight
Me in my mind during depressing parts: hands over ears saying LALALALAAAA NO THANKS NOT INTERESTED
The BEST case scenario for these visits is no change at all. Clinicians get very excited when they see that. It feels like some twisted version of the movie Speed: for the love of god stay the same. Don’t move upwards into improvements because that’s impossible, silly goose. But don’t slip downwards because you will die! P.S. I love you Keanu
“Wait Ev you said you look forward to this? Because this sounds soul sucking.”
Right right. But. What I really look forward to about these visits is the safe space. These professionals are IN IT. They know what we are going through. And they are kind, compassionate people with a sense of humor. They can mostly understand my speech, and when they can’t it’s whatever. It’s like being in a foreign country where you don’t speak the language and then stumbling upon some Americans in a bar. Regardless of whether you like them there is a sigh of familiarity and connectedness. A break from mutual misunderstandings everywhere you turn.
Happy to report I was mostly the same this past visit, still white knuckling the bus steering wheel. And that is something to be excited about.