By Diane Huberty, Retired RN, Certified Neuro Nurse ...and ALS Patient
Occasionally I run into someone who seems genuinely interested in hearing what it is like to live with a
relentless, progressive, untreatable disease such as ALS. I wrote this for one such friend several years ago. Even
though my disability has progressed, my emotional responses have changed very little over the years. Other people
with ALS may find it a confirmation of what they have experienced and caregivers and friends might find something
worthwhile in it too. BE FOREWARNED: This is not a happy, uplifting message and therefore may not be suitable for
people who are having a bummer of a day to start with!
The Attic: The Hidden Losses in ALS
You asked what it is like to live with ALS so I think it is time to take you on a tour of my attic. I don't
usually take people up there, but sometimes I meet someone who really seems to want to know what my life is like,
and the attic is a good place to start. It tells a story of what has happened to me. The story isn't so much
about knowing I am going to die as about having to go on living until I do. It is about being handicapped but it has
nothing to do with handicapped parking spaces or accessible bathrooms. Those are just inconveniences. The attic is
all about losses.
Ready? Watch your head -- the door frame is low and the stairs come up under a low roof! Boy, I need to get John
up here to stack some of this stuff, it is really piling up. He is so busy now days that when he has to put
something away, he just sets it anywhere. I brought a magic marker so we can at least label these boxes while we are
Here is the box I sent up when I retired. Nursing books, the old coffee mug, lab coat, name tag: "D.
Huberty, RN, CNRN, Neuroscience Clinical Education Coordinator." Man, I was so relieved to be free of the
physical demands of working! Accomplishing only 2 or 3 hours work in an 8-hour day. Frustrated by projects that I
thought would really improve nursing care on the Neuro Unit but simply couldn't physically carry out. Losing touch
with the reality of the nurses work because it was changing over time and I couldn't pitch in and do any of it.
Whew, I don't miss the frustration and exhaustion! I sure miss the people I worked with though. They call and
invite me out to unit parties sometimes, but after a year and a half, those calls are getting infrequent. And I miss
me. The neuro nursing expert the staff came to when a patient was in trouble, a family upset, a doctor on the
rampage. Someone who taught new nurses what they never learned about neuro in school. A productive (if somewhat
irreverent at times) committee member. A respected, well-paid professional. That is who I was for 10 years! Label
that box "Identity 11/11/95."
Look at this mess! A box of arts and craft supplies. Yarn and paint and wood burning tools. The pattern for the
booties I was going to make for my first grandchild. The cross stitch sampler for my daughter's wedding that I
had to give up on finishing. Crochet hooks for the set of Christmas Angel tree ornaments I was going make for each
of the girls. And a whole stack of woodworking magazines. The bookmarks for all the projects I wanted to try are
still in place! I always thought someday I would have the time for this stuff -- just like someday I would get
serious about getting in shape and someday we would build our own house and someday we would go to Hawaii and
someday I would organize my closets and someday I would take some classes just for fun, not for a degree. Seems like
I just got past the stage of saying "When I grow up, I want to . . ." and now there is no tomorrow, not
one that holds any of those things anyway. The feeling that gives me is not really sadness or depression -- I am
really quite happy on a day to day basis -- it is a simple lack of interest in something just isn't going to
affect me. The last year that I was working I found myself disengaging, taking on only short term projects,
disinterested in improving my management skills, not really caring about the hospital's long term goals. Now I
feel that way about life in general. It isn't a crying kind of sad feeling, just kind of an empty one. Label
that box "All my Tomorrows."
Whoa, this one is old! There is wallpaper and paint in here from the original owners of this house. This stuff
has been replaced and its replacement replaced! Throw that out, but save these rolls. These are what is in the
bedrooms now and something might need to be patched. Goodness knows it is going to have to last a long time. John
hates doing this kind of stuff. The current decor of this house is here to stay no matter how outdated it gets or
how sick of it I get! It is all John can do to keep up with the laundry, he doesn't have time for redecorating
and we sure can't afford to hire it done. Besides, he just doesn't care about decorating. He doesn't
notice if the towels match or any of that. He runs strictly on practicality. If you use a certain frying pan
regularly, you don't put it away, you put it back on the range. If that ugly, dirty, green throw pillow is
comfortable, it belongs on the couch even if it doesn't match a damn thing in the room. Things like that drive
me nuts. I seem to have an over-developed sense of color coordination! But, since he does all the work around here
and I can't even get to half the rooms in the house, in a practical sense the house belongs to him now. It
isn't really mine anymore. Even the family room where I spend 16 hours a day isn't mine. MY room would be
neat and clean! I was never a fanatic housekeeper, but now I am really uncomfortable in a room that dirty and
cluttered. I guess that discomfort is more because I can't do much about it, not the mess itself. I try hard not
to nag about housework, weighing my need for food, drink, bathroom, repositioning, etc. against the fingernails on
the chalkboard kind of feeling that stack of newspapers and junk mail and pizza crusts accumulating on the end table
gives me. Gotta prioritize and ration out requests for help or risk mutiny among the galley slaves! Label that box
This whole box of clothes really should just go to Goodwill. I don't wear dresses or shorts anymore. My legs
get too cold and they look awful anyway. Those long coats and sweaters are a nuisance in a wheel chair -- you have
to stand up to put them on. I wear clothes that are easy to get on and off, are comfortable sitting down, and
don't need ironing. Fashion is not an issue! No, that doesn't really bother me. I was never big on fashion
or particular about clothes. But it is kind of like the thing with the house; it is all for convenience and
practicality, not self-expression. I have to wear my hair in a style that John can blow dry quickly and easily. I
stopped changing earrings to match my outfits because that was just one more thing John had to do every morning. I
was never a fashion fanatic, but I just don't have choices about how I look anymore. Hell, I don't have
choices about much of anything. I get up in the morning at 5:30 am because if I don't, I am stuck in bed until
someone can get home again to get me up. I eat whatever someone is willing to fix whenever they have time to fix it.
When we go out I eat whatever is easier, neater, to eat. Plain hot dogs instead of chili dogs. I go to the bathroom
when someone is around to take me. I go shopping when someone has time to drive me. I guess we can label this one
"Freedom of Choice."
Now here is an archaeological find! My wedding dress is in this box! Do you suppose this will ever be in style
again? The last hoop skirt in captivity! Well, my daughters laugh at the dress, but I tell them it could have been
worse. It was 1969 and I could have been married barefoot in a meadow wearing nothing but love beads and flowers!
Here are the veil and the garter . . . invitation . . . guest book . . . Just close that box, I don't want to
see anymore. Yeah, we are still married. I still have John but it doesn't seem like we have a marriage
sometimes. It is more of an arrangement held together out of financial necessity and duty. There have been some big
stresses on the marriage in the last few years but we seem to be able to handle the big things. It is the loss of
the little stuff that hurts. Like holding hands -- try going for a walk and holding hands with someone in a
wheelchair. Like standing at the sink doing dishes and having him come up behind me and put his arms around me and
cop a feel while he talks to me. Like working side by side on the yard work or cleaning the house or waxing the car.
Now I just hang around and watch him work. My contribution is a suggestion or two which, coming from a spectator, is
not particularly appreciated. We can still have sex, but it is diminished by not only my physical limitations but
also by the fact that he has to take care of me. Try feeling amorous about a really out of shape body you have to
bathe and shampoo and dress and undress every day. (If that isn't enough to dampen your enthusiasm, try shaving
someone's armpits, helping with their tampon and other basics of hygiene and see if you are still interested!)
For all that physical intimacy, we seem to be growing further apart. We never had a lot of interests in common.
Classic male/female roles. He was into biking and boating and golf and I liked to read and sew and putter around the
house. Now I cannot join him in his activities and he has no interest at all in mine. I can't help with the
workload of running a household. And I don't even feel entitled to a say in some decisions in our lives. I am
not going to be here long term and he has to be allowed to plan for a future without me. Yes, I still have a husband
who loves me enough to stay in spite of it all, but we aren't really partners, playmates, or lovers anymore. So
what the heck do we label this one? Let's call it "My Kind of Love."
Hmm, what is in this box? Oh!! No, don't look! Here, give me the tape. This one is stuff that is not for
anyone else to see. No, I don't have any deep, dark secrets! It's just stuff I don't want to have to
explain. I don't have much privacy in my life now, so I am keeping my past to myself. I don't mean just
physical privacy. It is an invasion of privacy to need someone else dress you, help you to the bathroom, and all
that, but it isn't so much what people see as what they know. I can't hide a stash of chocolate, try smoking
pot, spend money, buy a present, try a new hairdo, read a book, change my clothes, or put a tape in the VCR without
somebody knowing. 99% of the time it is no big deal, but I would like to be able to read "Final Exit"
without anyone knowing, re-watch the Beatles Anthology without my family wondering if I have crossed that thin line
between fan and pathetic nut case, and toss out a whole stack of misprinted pages from the computer without anyone
knowing I screwed up! There, it is sealed shut. Just label it "Privacy."
Well, enough of this. Stashed away up in this attic are my identity, all my tomorrows, my control over my own
home, my freedom to make choices and come and go as I please and when I please, my ideas of the marriage and kind of
love I hoped to have, and my privacy. All lost to ALS. Someone in the ALS group once remarked that the ongoing
nature of the losses is what makes ALS so hard to deal with. It isn't like an auto accident where you come out
paralyzed. That is a huge loss to adapt to, but people do adapt and go on with their lives. With ALS, you no more
than adapt to the loss of one function when you find you are losing yet another. Losing the physical ability is only
the tip of the iceberg. You lose so much more. The attic gets more and more crowded.
Thanks for listening,