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I am a 43
year old woman who has always had a passion for
life including a very strong creative side, a
somewhat warped sense of humor and a great deal of
curiosity. I am married, a mom of three young
adult kids, two in college and one still at home.
I have worked as a social worker most of my
life and am in the process of giving up my work in
hospice, which has been an incredibly holy
experience. It has been my ministry and I am
grieivng all that comes with not only not getting
up and going to work every morning, but more
importantly the lessons that I learn every day, the
profound experiences and sense of
purpose.
I was
diagnosed with pd only two years ago after more
than a year of not knowing and going from
specialist to specialist and starting to feel that
I was really not very sane at all. I struggle
with fatigue, painful dystonias, fluctuations in
functioning throughout the day, depression which
seems unending at this point and impaired driving
which is one of the main reasons I must quit my
job. I am learning that I am much better at
teaching others to adapt than I am at doing it
myself.
I love many
things - intensely. I am always growing in my
faith journey (I had hoped for the scenic beauty
route, and seems always surprised by these backroad
detours). I love to waterpaint, write, draw,
garden, canoe, fish, do woodworking and
photography, rest, read and have always been open
to learning new things. I am learning to do
the things I love "differently" and that doesn't
feel very comfortable quite yet.
I have a
good support system but have a bit of stubborness
in me and so have been trying to do as much as I
can on my own for sometime. Very few people
know how much I struggle to do even very simple,
ordinary things. I was incredibly modest
until I had to have help getting out of the shower.
after a few times of standing in the shower cold
and crying, I finally came to the conclusion that I
would rather be warm, safe and naked than cold, wet
and naked and lying on the floor :) My family is
struggling to adjust and I am not much help right
now. The kids want the old relaxed,
spontaneous, playful mom back and I have become
serious, deliberate and not so fun. I am
trying to learn that this disease doesn't have to
limit me, but I think the lesson I need to learn
first is not to limit myself.
I have
recently set some goals for myself: the first one
is to pursue selling some of my art. It is
simple and I typically only make things as gifts
for family and friends, but I was encouraged
recently to do more with it and so even though it
will be a stretch, I am going to try. My
second goal is to canoe the boundary waters of
Minnesota next summer. It is something I have
always wanted to do and it is too late to plan for
this summer, and my family assures me that I can do
as much pr as little as I want but I won't have to
portage the canoe. I have written a book
about a friend that I want to illustrate as my
hands allow. It is a children's book that I
have been encouraged to check into seeing about
publishing. I think i'll try to get through
the illustrations first. This past year I
reached a goal that I have had for over 20 years
(way before pd), which was to see the ocean.
We went to the east coast and I was so
excited just to step into the ocean (of course then
2 minutes later be pummeled into the sand by the
tide). I have many other small goals, to get
through day-to-day and I want to learn to love my
life again.
I take great
joy in my family and though I have been very
protective about my illness. I am in the process of
learning to ask for help and to allow them to see
the parts that I have been trying so ineffectively
trying to hide.
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Me
and Gran
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