The following story was written by a fellow SPS warrior who I came to know through the open Stiff Person Syndrome Group the only support groups for this condition is through Face Book which is kind of sad and tells you how rare and isolated this condition is. We have never met in person but one day I will that is a promise! I feel humbled and honoured that she ask me to share her story she wrote. The following are her words.
Once I was a person of means, I had energy, smarts and the
ability to use them. I was productive and I tried hard to use my knowledge for
good. I fought evil in my early years of
life. It was hard but I knew right from wrong. It was an easy thing to know. If it didn't
feel good it was wrong, if it felt good it was right. Sometimes truth was hard to share as others
did not want to hear it. I didn't care I
told the truth, I was not going to lie for others. Not even my mother who was
the greatest liar of all time. She was a
bully, manipulator, deceiver and fraud.
I called her on all of her personality traits. She couldn't fool me like
she fooled everyone else. As a result she
and I never got along; good and evil have a very hard time living in the same
house. You’re always fighting a force
and I got tired of fighting that force.
So I left. I moved on, I made a life for myself. It wasn't fake or phony; I surrounded myself
with people of higher intelligence. I sat in on University classes to give
myself a higher thought pattern and to learn how to think outside the box. We don’t know what we don’t know, and I knew
there was so much more than the small world I had grown up in. I saw how the other side lived. I didn't ever
expect to be rich; I just expected to live a rich life, to be free to come and
go and to think and have an opinion and to matter in this world. I wanted my life to mean something and to not
be a mean something.
I had many children, 5 they are at various stages in their
lives, I’m here if they need me, and sometimes I need them. They are all successful and success is marked
in different ways. Do they make
money? If that’s how you define success,
then yes, 2 make more in a month than I do in a year. One is a single mom now struggling to make
her life better. Slowly she is, I am not
her judge or jury, I am her mom here to guide her and help her as she has
helped me through my struggles. Yes I
did struggle. I got a very rare disease
that affected every muscle in my body.
Did my family understand? No, but
they stood by me and helped me every step of the way. For that I will be eternally grateful. They
have given up so much to help me live. I
will never stop paying them back for the love and kindness and help in even
simple things like laundry or cooking a meal when your only 12 years old. The things the younger two did robbed them of
their childhood even though we did try to keep them busy with activities
sometimes they just needed to stay home and make sure I was okay. The maturity they showed was beyond measure
and the love beyond what I ever imagined they would be able to show. They did it.
With their help and my husband’s help I am recovering from a Stem Cell
Transplant. It was almost harder than the disease? Which was knowing I was
going to die, that was a given and a comfort somehow? It was settled, and then
a chance of a life time came, now? I don’t know when or if there will be
complications and I die from the transplant or something else? Or will I go on to have that rich life that I
grew up dreaming about. Do I see myself
yet emerging? Or like the ground hog,
just a shadow? Or no shadow? I’ll let you know as the journey continues I
just don’t know what the final outcome will be.
My life and our families life has been a roller coaster,
many horrible things happened to our family, including extended family turning
on us? It set me back, I stopped
walking, and going out. One of the things with HSCT is it doesn't stop the
brain from resetting itself, so the body can become symptomatic again and mine
did. Its emotional turmoil that causes
the symptoms to reappear and reappear they did. Much worse than while I had
Stiff Person Syndrome. I would caution
anyone contemplating HSCT to ensure you have a very good counselor to teach
you coping skills well before you have the treatment and to keep it going until
your body is recovered. These are skills
I must now learn so that as life happens and it does, we as a family are not
held back by my inability to function as a “normal” human being, a mom, a wife,
a friend. I was an extrovert and I find
myself thinking only of myself. It’s a
selfish act that never before would I have come across that way! It surprises even me.
What kind of future do I see ahead of me? I see one where we live in a place we all
like, where there is a place to walk to and get to with ease. Where I can take
a bus on my own and not freeze or fall as I no longer have any symptoms.
In order to do this I again have to learn these coping skills so my
heart stops hurting and my mind stops dwelling on things that I have no control
over. People who hurt people are hurting
too, I can see that and understand it yet when it’s directed at me it still
stings. So I have removed myself from
their lives, I limit my conversations about them as the thought of them creates
symptoms. As I type this I feel the pain
in my chest, it’s my heart. It hurts. I
never thought that anyone would ever be able to abuse me again. However as I was still in the early days of
recovering I was attacked emotionally which triggered my inability to leave
this house or walk properly. If I don’t
tell you, you may not be aware of what’s coming your way or what’s going on
when it happens. (I hope it never happens to you) Do I live in a bubble? Kind of, but my immediate family has learned
to slowly tell me things in pieces so that I have time to process what’s taken
place and to think rationally about how it will be handled. This is something I could not do a year ago. I've learned and they have learned that
emotional upset hurts my body. It’s how it reacts to bad news. There will always be bad news or good news,
good news is awesome and I don’t feel stiff or unable to move. So lots of good news is a great way to heal
your body until your mind is ready for the bad news. Having your family understand the triggers is
huge. No drama, no screaming or all of
sudden announcements is very important.
I don’t do last minute! If someone wants me to go somewhere? I must know ahead of time so my brain can
process that “we” are going out. Going
out is a big deal because of the Agoraphobia.
If it’s planned and I know where I’m going, will there be food
(diabetic) will I have to stand? Will I have to walk a long ways? I can plan ahead, if I need my walker I can
bring it. It doesn't mean I will use it but it’s my buddy and has saved me many
times. It also holds a lot of grocery bags both on the seat and on the handles.
Many times it made our life easier by not having to have my husband try to
carry everything himself. So in a sense I felt useful. We do need to feel
useful and needed. We also have to keep
pushing the limit on what we thought we could do and find out what we can
do. I try everyday to push the limit
inside the apartment, I create interesting desserts and meals, I clean, I
exercise, I do the laundry, I found an app on my I pad that allows me to
practice singing. My children clearly
told me to throw my vocal cords away, but I know my voice is my gift from God,
and that I must try to restore it and use it.
I found this by accident; it records my voice then gives me a score. (It
was not accident) I don’t know what the
score means I haven’t figured that out yet. I can play it back and listen to what I sound
like. I am a critique so for me I know if I am on pitch or not. If not I hit
delete and try again its okay it’s part of healing. It’s fun.
I went to a writing workshop; my husband brought me and got
me upstairs and into the classroom, so now I am learning how to write. My first story was on HOPE; my husband read it last night and asked me if it was real? “No,
it’s a story. I had to write a story.”
He said it was very good. That
was nice to hear.
So now I’m off to sort the wash and to go downstairs, again
I use my walker to hold the laundry, and the laundry soap which is very
heavy. I hope this gives insight and
clarity and an idea of what lies ahead. It’s not an easy road but the bumps
become less and less as you learn how to drive on the road without going into a
ditch. Don’t allow others to bump you into the ditch either. If I go into the
ditch? I now have ability to drive myself out of it. It’s my thoughts that either allows me to go
ahead or to stop me in my tracks. I’m
choosing to move forward, to stay on the road, and on my side of the line. I
will clearly be watching out of the mirrors, the window and my shoulder
check. If you choose HSCT? I am always here to help any of you who need
guidance or grounding when things go awry.
Thank you for always being here for me.
Thank you for my immediate family that have preciously given of
themselves at great cost for me.
