My Letter

[Guest guest]

Dear Ms. District Manager:

Thank you for taking the time to work out the scheduling issues with

me. I appreciate your extra time and attention. I can't imagine

what your job is like, the constant travel and demands upon your

time. I want you to know that I really, truly love my job.

This job suits me. It is close to home, it is part time. It is a

perfect creative outlet for me. And just enough contact with the

retail community to keep it " real " so to speak.

I work hard when I clock in and I challenge anyone to find fault with

my work ethic.

But on a personal note I am compelled to share with you something

that has bothered me since I met you.

It is your statements that because you have a sister-in-law that has

RA you feel you are " intimate " with this disease. Furthermore, I

find it inappropriate for you to make a distinction between challenge

and disability in regard to RA.

I know you mean well Ms. District Manager, but believe me, when

someone who does not have RA says they have an intimate understanding

of the disease because someone they know has it, it comes across as

presumptuous, even arrogant and condescending.

Until someone has spent years trapped in a body that is hell bent on

destroying itself in the most painful and humiliating way possible,

you simply cannot understand. There is no intimacy.

You can empathize, you can sympathize, be supportive. Accommodate and

encourage but you will never know and understand with intimacy the

debilitating effects of this disease. The unimaginable pain, pain

that is so unbelievable as to be madness in and of itself.

You can't possibly understand what this disease and it's never ending

pain and destruction to one's body does to one's spirit. To be

diagnosed as a child. To be given a pill at 17 and told, oh by the

way this will probably make your hair fall out....To wake up somedays

in so much pain as to be immobile. Unable to walk to the bathroom to

relieve yourself.

To be told you can't have a child at this point in time because even

if a pregnancy were to come to full term the birth defects will be

devastating because the RA meds you are taking at that time are

mutagenic.

To watch your fingers hands and arms and wrists and knees and hips

and ankles and neck and feet and elbows and skin disintegrate, twist

and become deformed. To be unable to dress yourself, to feed

yourself, to be unable to attend to your own toilet. When the

disease flares to a point you can't stand on your own feet or hold

anything in your own hand because your fingers have swollen to the

size of bratwursts and are now immobile.

When you have had to undergo more than a dozen surgeries before the

age of thirty to repair destroyed parts of your body. Then to add

insult to injury you are covered with hideous scars and must endure

return trips to hospital because of life threatening DVTs that have

formed following surgery.

To find yourself sitting on the kitchen floor crying with frustration

because you can't open a simple carton of milk or any number of

containers or bottles or jars or buttons or zippers or jewelry

clasps. Or to not be able to wear the heirloom rings passed down to

you because your fingers are swollen and twisted. Or not to be able

to tear open a simple paper sugar packet because the pain and

swelling in your hands just won't let you go there.

And that's just the physical aspects of the disease. Only those who

live the life understand the emotional devastation. The impact of

the moment when it really sinks in this is for EVER. There is no

cure. That this is your life, period. It won't get " better. " What

you have to look forward to is only more pain and destruction. This

is the aspect of the disease that leads to depression and feelings of

isolation and hopelessness.

Or the shame and humiliation of having to apply for social security

disability assistance at 24 years of age because you can't work a

full time job and can't support yourself on a minimum wage part time

job. Or dropping out of the social scene all together because you

are too embarrassed to answer the inevitable question from

others: " Well, what do you do for a living? " Or the humiliation you

experience when you see the look on a man's face when he

finally " sees " the disease and you know he won't be calling you the

next day.

Even if a miracle cure were devised today, the destruction is still

there and the destruction is painful. Those of us whose bodies have

been relentlessly attacked for years would still need pain management

protocols and would still be disabled in many areas of our lives

because the damage has already been done and much of that damage

cannot be repaired no matter how many prosthetics technology comes up

with.

Personally, I find it inappropriate for you to make a distinction

between challenge and disability when you do not live the life. Yes,

I agree with you it is a challenge. But when you can no longer:

run, climb, ride a horse, ride a roller coaster, ski, roller-skate,

jog, play basketball, volleyball, tennis, racquetball, baseball,

softball, field hockey, sky dive, spillunk, repel, ride a bicycle,

bowl, do weight training or gymnastics or yoga or martial arts or any

sort of self defense, kayak, canoe, backpack, embroider, quilt, take

a bath in a bathtub without someone helping you in and out of the tub

or to safely stand in the shower or even sleep....and on and on and

on....

My stars, after 40 years of living this life even I don't

fully " know " or am fully " intimate " with the limitations, challenges

and disabilities of this disease.....the point I'm trying to make

here, is if one is unable to participate in any physical endeavor

they choose because they are not physically able that is disability.

When participation is not an option, it is a disability. When you

spend years sending out your resume, get immediate calls for

interviews and then you see the subtle look on the face of the

interviewer when they see your deformed fingers and hands and

suddenly the in depth interview comes to a screeching halt and of

course you NEVER get a call back...thus denying you

employment....that is not a challenge...that is a disability.

When one cannot work a full time job that is a challenge. When one

cannot work a full time job that would provide them with the economic

and medical benefits that they need that is a disability. As you so

obviously pointed out to me on speakerphone last week.... " you're just

a part time employee, you don't even qualify for benefits... " that

was like a slap in the face.

Because I can't work a full time job I am economically discriminated

against as a part time worker in terms of financial compensation,

i.e., pay rate and health benefits. I find it appalling that those

who need health benefits the most are the ones that are denied it

most often. And now that Congress and the health insurance lobbyists

have stepped in and screwed things up royally, people like me who

need their meds the most can no longer afford them because the big

gun RA meds are Tier 4 meds (catastrophic coverage).

What this means for me and thousands like me, is yes, I can get my RA

med if I pay $482.50 a month for it every month through November of

each year. Then in December the insurance company steps up to the

plate and I only have to pay $74.00 for the medicine. And then it

starts all over again in January. And don't forget the monthly

premium I pay them each month for the privilege of paying $482.50 a

month for RA medicine. This amounts to more than one-third of my

monthly income....which means I haven't had my arthritis medicine for

over two months now.

What is that doing to my body? Nothing compared to the emotional

stress that it is inflicting. The emotional stress of trying to find

a philanthropic organzation that will help me with the cost of the

medicine I need. The emotional stress of filling out the endless,

bureacratic red tape in triplicate must be notarized then delivered

to the rheumatologist who then must dictate the required letters and

then sign and fax the paperwork that the philanthropic organizations

need.

The stress of waiting and waiting and waiting for help with the cost

of the medicine I need and praying I don't have a break through flare

in the interim. And those that do know and, are intimate with RA

know that emotional stress is one of the most surefire and

destructive triggers of a break through flare.

I could go on and on Ms. District Manager. On and on with the

intimate facts of this disease. Watching my skin turn to crepe

paper. Knowing the disease is systemic and is destroying my heart

and lungs and cardiovascular system as well as my bones and sinew.

Knowing that the very meds that keep the disease in check are

destroying my liver. And knowing that if my liver were to fail I

would not be a candidate for a transplant b/c of the preexistence of

the RA and the required meds that destroyed the first liver....Catch

22.

Knowing I'm not going to live to be an old lady. That is something I

have come to terms with and I'm okay with. But what I haven't come

to terms with is the look on my daughter's face when she realized I

wasn't going to live to be an " old lady. " That is the most

devastating intimacy of all.

I know you mean well Ms. District Manager, and I appreciate your

attempts at empathy, but until you live the life you can never know

the many intimate devastations of it. So please, don't say to me

that because you know someone who has RA you are intimate with it,

that you " know " ... " Believe me, my sister-in-law has it and I am

intimate with it, I know..... " because, honestly Ms. District

Manager, with all due respect, you don't.

Thanks for letting me share this with you.