Tag: disability

JC’s Confessions #32

In the first few seasons of The Late Show, Stephen Colbert did a recurring skit, then a best-selling book, called Midnight Confessions, in which he “confesses” to his audience with the disclaimer that he isn’t sure these things are really sins but that he does “feel bad about them.” While Stephen and his writers are famously funny, I am not, so my JC’s Confessions will be somewhat more serious reflections, but they will be things that I feel bad about. Stephen’s audience always forgives him at the end of the segment; I’m not expecting that – and these aren’t really sins – but comments are always welcome.

I am (perhaps overly) proud of my intellect.

It wasn’t always that way.

I was brought up with the ethos of “do the best you can” and the good fortune that my best fit in well with the expectations of schooling. That, coupled with a natural love of learning, landed me various honors. High school valedictorian, also attained by both my older and younger sisters. Phi Beta Kappa and summa cum laude at Smith College, where I was also the Presser Scholar in music my senior year. While I was thrilled to be recognized, I could chalk up the honors to my hard work and liberal-artsy curiosity rather than ascribing it to particular intelligence.

Developing pride came more as a self-defense mechanism when I was a young mom. I had chosen to be the full-time, at-home caregiver, facilitated by the time and place in which B and I were navigating parenthood. This was not, though, the lifestyle expected of a high-achieving, Seven-Sisters grad. Without the external validation of a paying job and in contravention of the “having it all” Super-woman model of the 1980s, I developed pride in who I was and what I chose to do – and do well, as I continued to do the best that I could – almost as a defense mechanism.

This quiet pride helped me navigate a number of challenges in our family life and in my volunteer work over decades, but pride is both a positive attribute and a “deadly sin.”

As many of you know, I’ve been struggling with a still-not-fully-diagnosed medical condition, now well into its second year, that has caused significant brain fog and fatigue. In particular, I’ve lost access to my creative side, which is a huge blow to my life as a poet, and my ability to research, synthesize, and think critically is diminished both in scope and duration.

It’s a difficult time in my life and made more so because my intellect has long been such a core part of my identity.

Who am I living with this disability?

How will I face the prospect of losing the life of the mind that I have cultivated and loved for so long?

I’ve been fighting my way through the medical maze to try to regain what I’ve lost but it’s not at all clear at this point that it will be possible. I also am facing the prospect that I could deteriorate further.

Can I remain proud of who I am?

I know the answer should be yes, in keeping with the dignity inherent in each person.

It remains to be seen if I can apply the grace I give to others to myself.

JC’s Confessions #31

In the first few seasons of The Late Show, Stephen Colbert did a recurring skit, then a best-selling book, called Midnight Confessions, in which he “confesses” to his audience with the disclaimer that he isn’t sure these things are really sins but that he does “feel bad about them.” While Stephen and his writers are famously funny, I am not, so my JC’s Confessions will be somewhat more serious reflections, but they will be things that I feel bad about. Stephen’s audience always forgives him at the end of the segment; I’m not expecting that – and these aren’t really sins – but comments are always welcome.

On April 6, 2025, Pope Francis appeared in public for the first time after returning home from his long hospitalization. It was at the end of a special Jubilee liturgy for the sick and health care workers and others who care for them. He had written the homily and a special blessing for the mass, although they were read by others. Francis wrote:

In this moment of my life I share a lot: the experience of infirmity, feeling weak, depending on the others for many things, needing support. It is not easy, but it is a school in which we learn every day to love and to let ourselves be loved, without demanding and without rejecting, without regretting, without despairing, grateful to God and to our brothers for the good that we receieve, trusting for what is still to come.

I am currently entering the second year of dealing with a complex medical situation that has not yet been fully diagnosed. I don’t know if I will be able to be adequately treated or if I will continue to see progression in my symptoms.

It’s hard.

I confess that I am not always gracious in this situation. I manage to let others do things for me and to ask for accommodations if I need them, but I find it difficult to set aside regret and to trust in the future.

This is especially hard for me in regard to my future as a poet. I don’t know if I will regain the creativity I’ve lost to brain fog and fatigue. I’m even losing the concentration and attention to detail needed to do submissions for my already existing poems and manuscripts.

I’m trying not to get to the point of despair.

These next few weeks are important in that I have a new batch of tests and specialist visits coming up.

Maybe having some more information about what is happening will help me to be better with being sick.

Maybe not.

I’ll try.

(I realized when I went back in my blog to find the number confession this was that this confession is, in a way, a continuation of #30.)

SoCS: crumpled?

I remember reading Linda’s prompt for Stream of Consciousness Saturday yesterday and thinking that I would pass this week because absolutely nothing came into my head, but, this morning, as I lay crumpled on my bed because taking a shower was too tiring and I’m trying to rest so I can participate in a poetry reading this afternoon, I thought I should post because I thought the prompt word was crumple but it was actually crackle, so never mind.

Yeah.

Brain fog.
*****
Please join us for Linda’s Stream of Consciousness Saturday! Details at the link above.

JC’s Confessions #30

In the first few seasons of The Late Show, Stephen Colbert did a recurring skit, then a best-selling book, called Midnight Confessions, in which he “confesses” to his audience with the disclaimer that he isn’t sure these things are really sins but that he does “feel bad about them.” While Stephen and his writers are famously funny, I am not, so my JC’s Confessions will be somewhat more serious reflections, but they will be things that I feel bad about. Stephen’s audience always forgives him at the end of the segment; I’m not expecting that – and these aren’t really sins – but comments are always welcome.

I try to take mental notes as I go through life in order to give myself guideposts for the future, to give myself advice as needed.

I have watched, sadly, some instances when, as people struggled with medical conditions, they stopped doing things because they were embarrassed to be seen needing assistance or having to do things differently.

As I’ve been dealing with my still undiagnosed health problems since March, I’ve tried to keep some of my commitments going, even though that has meant making major accomodations. For example, I’ve sung the last two Madrigal Choir concerts seated because my balance problems have made standing without support to sing impossible. I also only made it through our afternoon rehearsals by lying down before rehearsal and during our break because it’s difficult to hold my head up unsupported as the day goes on.

I’ve put other commitments on hold totally, even though I get “can’t you just?” comments. The truth is that whatever I do comes at a cost. If I push too hard, I pay for it with a surge of symptoms and fatigue that can go on for days. I choose to do that for a limited number of things but I can’t do it for everything or I literally would not be able to get out of the house – or even out of bed.

We may be close to getting, at least, a partial diagnosis and some treatment, if I’m lucky. I’m alternating between hope and despondency. I don’t know how much longer I can keep this unsatisfying balancing act going.

Do I have the humility to keep asking for the accomodations I need to keep a few of my activities going or do I give up and wait to see if I can get back to doing all the things I want in the way I’m accustomed?

It’s difficult, because I’ve seen too many people lose some joy and time with friends waiting to get better when they never did. With my limited energy and brainpower, I’m fighting to keep some things going, when the alternative would seem to be losing them totally and, perhaps, irrevocably.

So, what am I confessing?

I know my health condition is not a sin. Or what I’m doing to try to cope. Or not being able to power through these situations.

But I do feel guilty for letting people down and not being able to do what I want and not having my accustomed creative and critical thinking skills.

Maybe not for much longer.

Maybe permanently.

long COVID and ME/CFS

One of the fears that I have about COVID is the risk of experiencing long COVID, where any number of a vast constellation of symptoms occurs for months/years after the acute infection phase.

The symptoms are very similar to those that characterize ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). I have a family member with ME/CFS, so I am achingly familiar with the level of disability that can result. ME used to be referred to as fibromyalgia in the US, but now the ME designation is more common.

The October 5, 2022 edition of the (US) National Public Radio show On Point features an extensive discussion of long COVID and ME/CFS and how long COVID researchers and clinicians are learning from their peers who have been working for years on ME/CFS. All of these conditions are underdiagnosed and undertreated, so I wanted to share this with all of you. I believe this link will permanently take you to a recording of the episode. If the link breaks, you can try searching from the On Point link above or searching on your favorite podcast platform.

Anyone who has experienced these conditions or seen a loved one contend with them knows how difficult they can be. I want to raise awareness so that everyone affected can get the help they need. I also want everyone to realize that these conditions exist and are serious. Too often, affected people are dismissed and told their symptoms are “all in their heads.” While there is still much to learn, help is available, although it may be difficult to find, depending on the medical resources nearby. I hope we will all support research and treatment expansion so that the millions of people affected get the help they need.