It’s a large room, as bedrooms go. It has two double windows. The shutters are closed. The bed is metal, painted blue. It’s a narrow bed, neatly made. An old radio stands on the bedside table. The only sounds this room hears are from that radio. 

The floor is golden oak, showing its age. The walls, too, are expressive, with cracks in the plaster on every side. The ceiling boasts a schoolhouse light and fan, turning slowly this autumn day. The lamp on the bedside table was an oil lamp, with a chimney, electrified now with a flickering bulb, a hint of the original flame. There is no soot on the glass chimney. 

Books and papers are piled on the bedside table, the only suggestion of disorder. Even the medicines are labeled and neatly organized in lines. If a cat leaves fur on the quilt, there is no sign of it. 

CHRISTMAS EVE VISITORS

Family and friends are celebrating these holidays together at Chico Hot Springs. I haven’t been there since childhood and would like to visit again. I’m not going this time. 

A quarter of a century ago, I was diagnosed with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome.) It cost me my job, my career, most of my friends, and all of my social life. I have never been bed bound for more than a day or two at a time, but I have been housebound for much of these two and a half decades. 

ME/CFS is at least partly an immune system disorder, and seems to be a cousin to Long Covid. Both are post-viral illnesses with a universe of symptoms, including fatigue (tiredness to the tenth), brain fog, body aches, cognitive deficits, etc etc etc. Long Covid has, as well, sometimes terminal heart problems. 

Covid itself is terminal for some, especially those with characteristics I share: elder, fat, immune system dysfunctions. When it first made its appearance, I was less concerned with the fatal implications of a pandemic than with the ongoing threat of massive disability. We have not even begun to count how many survivors are beginning their journey into my world. 

It’s an extremely limited world. Sometimes (not recently) I have been able to go out for a meal. Since Alan entered my life and took on much of the daily tasks required to keep us and our pets and our house in order, I’ve even been able to travel. 

Alan can drive, as I often can’t due to brain fog or pain or fatigue. He can plan and carry bags and take our little Pomeranian for walks. We have learned that, after a full day of travel, I will need to spend a day in bed, maybe more, and we plan for that. Road trips have become a favorite activity for me. One, since Covid, rarely indulged, and now mostly avoided. 

In Montana, most people are (or think they are) “back to normal”. Very few wear masks at all, even in medical spaces where they are presumably required. Many do not vaccinate, despite the risk to others. For people like me, with impaired immune systems, infection is a real danger. 

Reports emphasize that one of the most dangerous activities one can engage in is eating in a restaurant. It is also one of the most pleasant to share with friends and family, and one I don’t feel able to risk. 

This holiday gathering will involve crowds, eating out, and socializing in various places with various people, known and unknown. In addition to the symptoms mentioned above, I am easily overwhelmed by noise and light and too much going on. Supermarkets are hell. 

Alan’s family has been welcoming and courteous to me. I have been in their homes and it was a soft landing. But … and this is not their problem, but mine … I don’t help. You know how, when you visit friends and family, you help out? Maybe chop veggies for dinner, or sweep a floor, or help with washing up? I usually can’t do that. It feels bad to not do that. 

It feels bad to be a downer. It feels bad to not participate. It feels bad to be there but absent. It feels very bad to miss these years of grandchildren growing up, miss getting to know each unique, amazing personality. I have had, and hope to have more, time with them. I cannot be a regular grandma, certainly not a storybook grandma, but to the extent I can I would like to know them and for them to know me. 

But most of all, I want as long as possible with my friend and lover and husband while we are both able to fully appreciate our time together. This late romance was an unexpected gift. My illness is not its only burden, but so far we have held together. I hope we can keep doing so. 

[Crossposted from Abide: Living With Chronic Illness]

#MECFS

#LongCovid

#chronicillness

CHRISTMAS EVE VISITORS

Family and friends are celebrating these holidays together at Chico Hot Springs. I haven’t been there since childhood and would like to visit again. I’m not going this time. 

A quarter of a century ago, I was diagnosed with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome.) It cost me my job, my career, most of my friends, and all of my social life. I have never been bed bound for more than a day or two at a time, but I have been housebound for much of these two and a half decades. 

ME/CFS is at least partly an immune system disorder, and seems to be a cousin to Long Covid. Both are post-viral illnesses with a universe of symptoms, including fatigue (tiredness to the tenth), brain fog, body aches, cognitive deficits, etc etc etc. Long Covid has, as well, sometimes terminal heart problems. 

Covid itself is terminal for some, especially those with characteristics I share: elder, fat, immune system dysfunctions. When it first made its appearance, I was less concerned with the fatal implications of a pandemic than with the ongoing threat of massive disability. We have not even begun to count how many survivors are beginning their journey into my world. 

It’s an extremely limited world. Sometimes (not recently) I have been able to go out for a meal. Since Alan entered my life and took on much of the daily tasks required to keep us and our pets and our house in order, I’ve even been able to travel. 

Alan can drive, as I often can’t due to brain fog or pain or fatigue. He can plan and carry bags and take our little Pomeranian for walks. We have learned that, after a full day of travel, I will need to spend a day in bed, maybe more, and we plan for that. Road trips have become a favorite activity for me. One, since Covid, rarely indulged, and now mostly avoided. 

In Montana, most people are (or think they are) “back to normal”. Very few wear masks at all, even in medical spaces where they are presumably required. Many do not vaccinate, despite the risk to others. For people like me, with impaired immune systems, infection is a real danger. 

Reports emphasize that one of the most dangerous activities one can engage in is eating in a restaurant. It is also one of the most pleasant to share with friends and family, and one I don’t feel able to risk. 

This holiday gathering will involve crowds, eating out, and socializing in various places with various people, known and unknown. In addition to the symptoms mentioned above, I am easily overwhelmed by noise and light and too much going on. Supermarkets are hell. 

Alan’s family has been welcoming and courteous to me. I have been in their homes and it was a soft landing. But … and this is not their problem, but mine … I don’t help. You know how, when you visit friends and family, you help out? Maybe chop veggies for dinner, or sweep a floor, or help with washing up? I usually can’t do that. It feels bad to not do that. 

It feels bad to be a downer. It feels bad to not participate. It feels bad to be there but absent. It feels very bad to miss these years of grandchildren growing up, miss getting to know each unique, amazing personality. I have had, and hope to have more, time with them. I cannot be a regular grandma, certainly not a storybook grandma, but to the extent I can I would like to know them and for them to know me. 

But most of all, I want as long as possible with my friend and lover and husband while we are both able to fully appreciate our time together. This late romance was an unexpected gift. My illness is not its only burden, but so far we have held together. I hope we can keep doing so. 

[Crossposted to Watermark: A Poet's Notebook]

#MECFS

#LongCovid

#chronicillness

an accumulation of wounds

a collection of injuries 

scars not visible 

to casual eyes 

i sit on a stool 

brushing my hair 

snow drifts, thick 

and slow past 

the window 

each day

the death count

rises

i am glad to be old 

to not witness 

what is coming 

my own selfish choices 

even in sleep 

there is no 

forgiveness

~ sharon brogan

january 02022

#poem