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 Occasionally I run into someone
who seems genuinely interested in hearing what it is like to live with a
relentlessly 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
I thought perhaps it was 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 up here
. . .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 woodburning 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 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 "Environmental Control."
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 area
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 never was 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 archeological 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 is 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, are 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 everyday. (If that
isn't enough to dampen your enthusiasm, try shaving someone's armpits, helping
with their tampax 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 of the 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 have to
have 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 nutcase, 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 is 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,
Diane
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