I just got married,
last October,
on the 25th.
My new bride has battled obesity,
fighting back from a high of about 700 pounds,
down nearly to half that,
currently 375;
her sister had a heart transplant,
in August of 2005,
at the age of 34;
and I have an emotional disorder.
And we have other family members,
with other disabilities,
and there is more to say
about the disorders listed above.
Lots to write about.
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Here we go:
First,
me:
I'm a widower,
happily remarried.
During the six years between the time
my first wife,
Pam,
started getting very ill,
and the time she died,
I reached a low enough point
to consider ending my life,
and from what three psychiatrists said,
and what drugs I tried,
and how I changed,
and what it took to get through those days,
I came to realize
that I have a mild,
but serious,
emotional disorder.
Since I'm not currently on medication,
you might think I have no disability at all,
but I've had at least three episodes
in recent years
that could have gotten me fired from my job:
that's serious.
More about that later.
My wife,
Tonia:
Tonia's mother became seriously ill,
when Tonia was a teenager,
and she watched her mother gradually dying,
and did what she could to help her,
in the last years of her life.
Her father was gone,
and Tonia was the oldest,
with four younger siblings,
and Tonia took on the task
of caring for all five of them,
her mother and her sister
and her three brothers,
getting the kids off to school,
putting meals on the table,
dishes, laundry, cleaning,
Tonia made sure everything got done.
Imagine the stress,
the brutal stress,
day after day.
After her mother died,
Tonia started eating huge amounts,
gaining weight with no end in sight.
You see,
her mother's illness and death was caused,
at least partly,
by unsafe methods for losing weight.
Losing weight had killed her mother,
now she was gaining weight,
and just waiting for someone to say something,
so she could tell them to go to hell.
Tonia eventually turned that around,
as I wrote above,
and is now down almost to fighting weight,
at 375.
I say fighting weight,
because I think she's actually more muscle than fat.
But stop and think,
her 700 pounds came from
an emotional disorder.
Remember my emotional disorder,
mentioned above?
The theme of this diary,
the point I'm making,
and the reason for the title,
is that in many families,
maybe in your family,
even though you may not think of it as a disability,
even if you have no one in your family
in a wheelchair,
missing a limb,
taking lots of meds,
no one in your family with an obvious disability,
maybe you have a family with
emotional disorders,
and you are ignoring it,
saying,
everyone has mood swings,
everyone flies off the handle sometimes,
everyone loses it now and then.
But my angry outbursts
could cost me my job;
Tonia's reaction to severe stress
could have killed her,
since obesity related illnesses
kill folks early,
as early as using tobacco.
Let me tell you more about Linda,
Tonia's sister,
who has a transplanted heart inside her,
then I'll go back to the emotional disorders,
in other family members,
and in friends I know.
Linda got her "new" heart
in 2005,
and,
even though she's doing much better than she was
with her original heart,
there is at least one problem.
The heart's "regulator",
the thing that tells a person to rest,
to sleep,
that regulator is either missing,
or not working,
in Linda.
This means that when she's feeling good,
she sometimes stays up too late,
since she doesn't feel tired,
and then,
she becomes way too tired,
and her heart has trouble keeping up with her.
Even though Tonia has a PhD in nursing,
she simply does not know enough of the medical details
and terminology
to give you a better explanation.
My point of telling you about Linda
is that even though organ transplants seem wonderful,
and Linda was only 34 when her old heart was truly weak,
so she sounds,
to me,
like the poster person for organ transplants,
yet she is,
still,
very disabled.
A transplant may not make you
non-disabled,
not at all.
You should live longer,
but my theme is,
rather than assuming that someone you know,
who now has a donor organ,
working well,
is now non-disabled,
think again;
ask about follow-up
and maintenance,
ask about long term care.
Back to emotional disorders:
My old friend,
Lori,
had a verbal fight with a woman
who had been a friend for years,
but no more,
not after that fight.
The sad thing is,
Lori was so offended by words
that she escalated the fight to a slap,
and the woman called the police,
and Lori was evicted,
and taken off Section 8 rent subsidy
for 5 years.
When you're living on the SSI check,
it's really hard to pay your rent,
and still buy groceries and toilet paper.
Once again,
an angry outburst
can have serious consequences.
Lori and her daughter,
Laci,
have a history of angry outbursts;
Laci is on probation from hitting someone.
Lori and Laci don't hit hard,
no one is injured,
but failure to refrain from actual hitting,
anger that leads to that,
it's not a small thing.
Seems like a fairly serious disability,
when it causes serious troubles.
My new bride,
Tonia,
has,
as I've mentioned,
three younger brothers.
They're all adults in their thirties, now.
Terrell and Michael are doing well;
Terrell has a part time job,
Michael has a very good full time job.
But Isaac cannot hold down a job;
he has the same problem I have,
the angry outbursts,
but his are so bad,
he simply can't do it,
he can't face the usual workplace situations
without losing it completely.
He hasn't hurt anyone,
and he wants to make certain he does not,
that's why he's applying for disability income,
or SSI.
To explain an example of his anger,
Tonia was with him, in our car,
and he needed to stop at a gas station,
and ask someone there how to get water for the radiator.
He pounded on the steering wheel,
and growled in anger,
I hate asking people for things!
Tonia had to work a few minutes
to get him to calm down.
In summary:
My new bride,
Tonia,
uses one of those power buggies
when she shops at my Walmart workplace,
since the building is huge,
and her knees are bad.
When you see someone using a powered chair,
you can see there is a disability,
but if everyone in your family
can walk all over a Walmart
and you feel you have no serious disabilities
in your family,
think again,
think about troubles holding down a job,
think about incidents that get someone on probation;
think about emotional disorders.
And be aware that transplants don't always end all problems.
So,
take a deep breath,
face your own limitations,
and the personal challenges
of everyone in your family.
And realize,
that maybe for you,
and maybe for most folks,
the family living with disabilities
is not the family down the street,
or across town,
it's your own family.
Thanks for reading.