Part 2 - The Dream!

Time for Part 2.

None of this will really make sense without reading Part 1, so if you somehow saw this, but never got a chance to read my last blog, go there, read it, and then come back!

I believe we all have dreams inside of us.  They start out when we’re young, mostly consisting of professions like nurse, teacher, doctor, fireman, etc.  When we get older our dreams are to get out the house, go to college and make a million dollars.  And even further down the road we start thinking about families, houses, stable jobs, retirement accounts, and traveling.  But is that really all we dream about?  I tend to think not.

In the midst of aimless wandering around life, we can land in this place of enlightenment – that sweet spot where it seems the gods are shining down on us, and the light bulb of life suddenly goes off and we just “know” what we are meant to do with our lives.  It’s a great feeling.  I feel we are made for a purpose, and without one, life can seem point-less.

It took me a while to have this ah-ha moment.  In high school I had dreams of going to art school for interior design, but I also wanted to be a CEO of a major company.  Then in college I wanted to become a missionary, traveling around the world.  Then I settled into a busy life doing anything and everything under the sun, all fun things and things I loved, but spreading myself thin and remaining unfocused.

Then, the worst thing in my life happened.  A tragedy.

I went from being totally independent to totally DEpendent .  I went from being active to being completely sedentary, not even able to sit up.  I went from walking to being confined to a wheelchair.  I couldn’t put on a pair of socks, couldn’t turn myself on my side in bed, had zero energy, lost weight, my muscles atrophied.  I went from having a will to live to wanting to die.  Why is this important?  Because there are so many people feeling JUST the same way, going through SO many of these exact things, and feeling helpless, hopeless, and ALONE.

I sometimes feel that the easiest part of my journey was being IN the hospital because I had a handicap accessible place to stay, someone delivered food to me every day, and my bedding was changed and room was cleaned without me lifting a finger (well, almost).  But when I left the hospital and nursing home, and moved into a regular home, and eventually back to my mom’s house…well, that’s when the real fun began.

Can’t fit the wheelchair in the house because the doorways and hallways aren’t big enough.  Great.  So I use the walker, which also barely fits, and I have to “walk” sideways to get into the bathroom.  How do I get into the tub?  Oh cool, they have these really cool bench seats you can get where you can slide in.  What about sleeping?  How do I do that?  How do I get in and out of bed without hurting myself?  How do I put my socks on?  And what about going to the bathroom on a toilet that’s so low I have to hold onto the counter and tub and lower myself onto it?  These aren’t really things you think about until you’re staring at your sock, then your foot, you are restricted from bending over, and you suddenly realize you lack the necessary tools to perform any basic living functions.

And you can forget about housework.  How are you supposed to vacuum a house while you’re only allowed to use the back of one foot to stand on?  Exactly.  Then there are the 15 weekly doctors, therapy, and counseling sessions you need to attend.  Who’s going to drive you?  You certainly can’t do it yourself!  You can’t grocery shop by yourself either because now you need to ride in the motorized cart, standing up every time to get something off the shelf, so that by the time you make it halfway down the first aisle you’re ready to collapse from exhaustion.

You can’t work either, so how do you survive?  Where can you get help?  What about health insurance, disability and community organizations to go to that offer assistance?  How do you find out about those, and what do you need to do in order to apply, or better yet, qualify?

This was my personal experience.

Because of the legal aspects of my case, I was connected with a victim’s advocacy network through the state of Pennsylvania.  These were the most awesome people!  Funds were available to help me with out of pocket expenses, which added up quickly.  I had an amazing community in my church, which also took up donations for me while I was in the nursing home, to help out.  They helped move my stuff out of my apartment and into storage while I was in the hospital, even painting my room back to normal.  They took care of me and my family in every way.  I transitioned to a friend’s handicap accessible house after the nursing home, had a mom who stayed with me from the time I was in the hospital until I was ready to be on my own again, 6 years later.

I had family, friends and community.  But later on when I was finally on my own, but still needed help I was lost as to where to go to get help.  Try to think about what you would do and where you would go if you suddenly had nothing, could do nothing, and had no one to help you.  What would you do?  Unfortunately, there are many people in this exact position.

One of the most frustrating experiences I went through was going to a community organization to try and get financial assistance for my medical bills.  The first time I went, I made it up to the desk only to find out I needed 6 other items to prove my financials, housing and proof of nationality in order to even be seen.  The next time I came, in so much pain, with my 6 items, only to sit for 3 hours with several other people waiting to speak with someone.  I finally got called, the person rattling off a list of questions, taking copies of my documents, and sitting for another half hour before hearing I wasn’t eligible for anything because I “made too much”.  As I hobbled away in even more pain, and now even more discouraged, now with a list of several other organizations in the area who “may be able to help”, I couldn’t help but think this was the worst waste of time, and I was never going to get the help I needed.  It ended up being true, as I went through that list, visiting a couple more places, getting more lists of more places to go, and never receiving any help.

I got to thinking about ways this could be simplified, how things could be different.

What if…

There was a one stop shop.  A networking center, partnered with all services in the private, public, state, federal and local governmental services as part of a database.  Clients come in once with all their paperwork, signatures and demographics, enter this information into the database and are matched with available programs based on their eligibility for those programs, and the needs they have.

What if that same networking agency was then able to fill out applications for all eligible programs, using signatures on file, or using an online signature program, so the client can sign off from the comfort of home?  These applications could then be submitted directly on their behalf.

Not only would this facility do the networking, but there would also be affiliated social workers, available to meet with clients and/or organizations to liaise on their behalf. 

The other side of the coin is helping people to remain in the homes they have, and finding ways to make that affordable and logistically possible.  To make this a possibility there would be a website, kind of like an “Angie’s List” for disabled people.  After building strong vendor relationships and partnerships, specials and discounted services would be made available for people within this network.  Services would include anything needed to keep people in the homes they love, or to make them as comfortable and self-sufficient as possible in the place they call home.  Anything from housekeeping, pet care, grocery shopping, personal groomers, visiting nurses/doctors, landscaping, home repair, home renovations to expand doorways, build ramps into your home, etc., purchase discounts for handicapped vehicles, medical supplies, medical service providers, automotive repair, etc., etc., etc.  You name it, it’s on there.  Clients can also rate all of these vendors and providers, and provide feedback on services they received. 

You’re probably sitting here thinking, “This girl is nuts!  This is impossible to do in one lifetime!”  Perhaps it is.  I may only get to do one of these things on the list, or maybe find a place that’s already doing one of the things on this list, and help them in their goals.  A dream is never a concrete thing.  The vision and mission of one’s dream is solid, but the logistical and practical applications of those dreams can take on many forms.

You might be able to understand why I’ve been holding onto this dream for 5 years, just keeping it to myself, in my little treasure box.  The problem with treasure boxes is…that’s where the treasure stays…in a box.  It was time to let it out and give it breath.  It just seemed like the right time.

I recently had an opportunity to take a position with a local health organization.  I had other offers at the time, but felt like taking this position would put me in line with my future goals, giving me networking capabilities with social workers, patient advocates, vendor relations and purchasing, marketing, non-profits, and even database engineers.  I couldn’t have asked for a better “in”.  I don't believe things "just happen".  This is a God-sized dream, full of God moments in the making of it!

So now what?  Ummmmm…well, that’s a good question!  I honestly have no idea.  Well, I have some idea.  I know the occupational experience and school I need to get in order to have a solid foundation.  I know I need to develop a business plan and network, network, NETWORK!  

Sometimes I get all panicked about this God-sized idea, and then He reminds me that He’s the one who put it in my heart, so I should just relax and let him handle it.  Then there are other times where I feel a sense of urgency, and like I am wasting time at 35 years old, wondering how this dream is going to play out.  I mean really.  This is a LOT to take on.  That seems like the biggest understatement on the planet!

So as scary as it is, putting this on paper, giving it breath, making me nervous about the accountability I will face from others and myself on how my life is stacking up to this crazy idea I have in my head, at least it’s out there.

It’s out there!

Oh, did I mention I want to write a book and do speaking engagements?

Hey, if you’re gonna go grandiose, you might as well shoot for the moon!!