By Louise Sertsis
Sitting
recalling events from a lifelong passed, I wonder how life became so
cold, almost unbearable. My words and thoughts are rarely heard by
others. Only by writing, can I feel truly free without judgment or
criticism. Pity was neither welcomed nor needed, only a familiar face
that was a close friend. Long days and even longer nights, have allowed
me to reflect on memories of happier times.
I
had an abundance of friends, was fearless in groups, and always ready
to meet new people. You never anticipate the loss of a personality
trait, the realization of your new reality leaves bewilderment and
fear. Fear of never regaining the zest for life and confidence once
held, wondering if and when communication and laughter would flow so
effortlessly and meaningfully as before. The ability to connect with
others seems daunting even impossible. I struggle daily to convey my
thoughts verbally, as I'm ashamed of this fearful, feeble, weak person
I've become. Unrecognizable passing time until I'm reborn, and ready to
start living! Self-acceptance was never my strong suit, but I'm trying.
All
of my girlfriends are mothers now, and busy nurturing their children. I
now have phone friends, since most have moved far away. I've been on
long term disability for eleven years now, so meeting new people, and
socializing is foreign to me. For many years I didn't want to leave my
house, because I felt so horrible with the devastating effects of
Multiple Sclerosis. Now I feel better than I have in years, and wanting
desperately to feel comfortable in social situations. I feel like I'm
the new kid in school, who has zero social skills and drowning in her
fears.
This
is a turning point in my life, as I need and desire the interactions
with new people. I should be amazed at how far I've come, especially
when considering where I've been. About five years ago my words were
very muffled and inaudible. I was tired of my friends and family, asking
me to repeat myself. Not talking was just a better option, or one word
answers that were guaranteed not to require more explanation. I knew at
this point spoken words, we're difficult to say, let alone my word
processing and retrieval were noticeably impaired. I spoke very slowly,
and I was frustrating to others who were obligated to listen to me. I
basically could not carry a conversation, so I lived like a hermit in
solitude! It felt like I was imprisoned in my own mind, speaking to
select friends, family and my husband. I understand that I was stubborn,
it's a wonder that the remaining people didn't give up on me. Like the
saying goes, "you find out who your true friends are, when going through
the toughest times"! That is very true, just hard to accept/understand.
Now
I'm finally feeling better, needing and wanting to revamp my friends
and start over. It's going to be the hardest to overcome my comfort zone
(my home), but I'm tired of the same daily routine. Change is seldom
wanted, but in this case required. It's time to start living again; I'm
just not sure where to begin. Trial and error will be my new normal
until I can feel comfort in my own skin.
This
is challenging, being 40 and realizing that everything is new and
different than before. I never understood people with Multiple Sclerosis
that say, "I have MS but MS doesn't have me". In my case MS has had me
for the past 11 years or so. In all honesty, I feel MS has definitely
changed me. I can't say for certain if it's a good or bad thing, just
different. I can say, I have experienced true pain and impossible
situations, but I'm stronger for it! My life is very different than the
way I had envisioned it, but I really believe its how you handle
negative situations that will make or break you.
Yes
I would have loved to have kids, and that feeling of life growing
inside me. Realistically, MS has stolen that opportunity! I don't want
to admit this, but that is my one wish, that I could have been a mother.
Adoption is the only way, but my own biological child is out of the
question, since having had a bone marrow transplant. It was done to halt
the progression of MS, a decision made, at the time, as it was my only
alternative. I guess I can't blame MS for the inability to have a child,
in hindsight I would have protected my eggs for future use. I am very
grateful for having had the BMT, but sad that I will NEVER have any
biological children.
That
contributes to the loneliness I'm so familiar with. I am slowly dealing
with my emotions surrounding my biggest hurdle; loneliness! I never
anticipated being so young, and being in a wheelchair. Reality is people
do not want to associate, socialize, and let alone being true friends
with a person in a wheelchair. That's been my experience. I don't
understand how so many friends I held for years, progressively dwindled
as my MS progressed. It is challenging to reveal these feelings I buried
for an eternity. I thought things would change, but nothing has! I'm
brutally honest, as I know that these feelings are all too common among
wheelchair users. I try focusing on the future, rather than being stuck
in the past. Only facing my truth and acknowledging my faults, will
things change.
The
first thing I must change is my perception of who I am. I will not
accept MS as being my fault; it’s only my reactions to my unique
circumstance that are my "fault". MS will always be a part of me that
will never change. Today is a new day, where I promise to live the life I
want regardless of my diagnosis. I will stop apologizing for my health
and things I can't change, I will choose to say I can and I will, I will
set new goals starting today, I will not sweat the small things and be
grateful for what I have. I will learn to laugh again, and feel
comfortable around others. I will stop thinking that others are judging
me, some might but I will not care. I am me and I embrace the future,
with MS being as my sidekick, rather than MS defining me as a person.
For all the naysayers out there, never assume I can't because that just
fuels me even more.
I
consider myself to be an advocate for the disabled and strive to make
every day count. I am not perfect by any means. I'll have bad days
(like everyone) but make it my mission to carry on living the best life I
can. I choose to be happy, resourceful and independent. For many years I
lived like a hermit, but those days are gone. I am truly living,
creating/inventing to hopefully make a positive impact on the world,
specifically with disabled individuals.
Currently
I am working on an accessible, functional swimsuit line called Advanced
Freedom. Swimming is my absolute favorite activity. As I progress with
this disease, I realize that swimsuits were definitely not created to
include all abilities. I've had bladder issues from the onset of MS. The
typical one piece swimsuit is just not practical to dress/undress,
especially for a disabled individual. When the swimsuit is wet, it
creates an almost impossible task when needing to use the washroom.
Since I go to the washroom frequently, one piece swimsuits presently are
just not an option. Once all women reach a certain age and/or having
had children, coverage of the mid-section is of top priority. Shouldn't
there be an accessible one piece that provides coverage, while
accommodating the need for going to the washroom?
To
tackle this issue I've invented a "one piece, two piece swimsuit". It's
a beautiful one piece swimsuit that is actually two! The top and bottom
portions are held together by magnetic buttons on each side of your
waist. The magnets are waterproof so chlorinated or salt water doesn't
affect the strength or condition of the magnets. It works beautifully
and can be worn by all women. Women of all abilities, sizes and ages can
now find their one piece transformed into the new, more convenient, two
piece. Unlike regular tankinis the swimsuit will not ride upwards in
the water. It is considered a one piece to everyone else.
Tankinis
can also stay tankinis with the magnets going down the back/side of the
upper portion of the top. It resolves two problems, one being it keeps
the tankini in position when in the water, and two being more accessible
for people who cannot raise their arms over their head. It also adds an
extra element of style to existing tankinis.
It
is my mission to make disabled people feel more comfortable in their
own skin, while feeling included in society. I'm starting with swimsuits
because I feel disabled people have been forgotten when designing
bathing suits. It's especially close to my heart, as I myself almost
gave up on a sport I loved so much. Not to mention the benefits of
swimming for a disabled person.
It
is also a project that I will be proud of, regardless of my
circumstance. Multiple Sclerosis has not and will not change my mission
in life. While loneliness is still my biggest hurdle, in time I hope
that changes. I think through making inclusion a priority, things will
fall into place. Society as a whole will not change, if there aren’t
people with disabilities fighting for the greater good.
It's
all about trying to keep busy, and providing something that will help
others. The swimsuits are only my first idea, my thoughts are never
ending. Others won't hire me, so I'm hiring myself. If it can help me,
it will help many others in similar situations. Life has altered my
initial plans, but I'm creating new ones. Life is not measured by
suffering, but rather by giving your outlook and positive reach to
others.
If you would like more information on Advanced Freedom swimsuits, please go to G+ under my name Louise Sertsis". If you have any questions my email is advancedfreedom01@gmail.com
If you would like more information on Advanced Freedom swimsuits, please go to G+ under my name Louise Sertsis". If you have any questions my email is advancedfreedom01@gmail.com
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