Posted in The Billy Blogs

The Space Between

So the holidays have passed and as usual, I received nothing from Bill, which is something I am used to and have been for awhile. He has his reasons why, lack of staff willing and able to accommodate his wheelchair to take him to the store, the crazy Providence weather, the lack of money that comes from the system that keeps him alive, all understandable given the disability aspect of this relationship. This is what I “signed up for,” jokingly speaking. 

But looking back, it never used to be this way. He used to do cute little things for me all the time. And then, it stopped.And I never figured out why? Was it his staff and payee issues, or the fact he stopped giving a shit? Who knows?

I tried not to let it get to me, but when the season of love and Valentine’s Day is upon us, you can’t help but be reminded that the love you receive isn’t the love others get. You soon realize that your relationship is barely a relationship to normal standards. Sure, you got the Skype and the phone calls down, and you ship packages to him even though you get nothing back in return. But it gets old after awhile and anger sets in. And what makes that anger worse is that the time spent is limited to a screen. 

Since I’m still on a seasonal route with Universal and the Media Center, I don’t make enough to save money anymore like I did when I worked full time. Those trips I promised myself I would take every six months, well, they’re nothing but a dream. 

The space between us is starting to tear us apart, and there isn’t anything I can do to stop it. If I talk to his caregivers, I come off as a pompous asshole wanting to mooch off of him for jewels and such. And believe me, that isn’t the case.

When we lived close to each other, he was great at remembering my birthday and the holidays, sending me roses for finals week and writing little notes “just because” and mailing them to me. I never ask for much but an attempt from the heart to do a little somethung to make me feel special. Hell, if it’s a plushie and a card from the Dollar Tree,  I would be happy. He doesn’t even have to pick it up for me given the crappy weather. As long as he signs the card, I’m good to go.

You know, like he used to.

Being long distance sucks, and it sucks even more that other factors like his health and care staff unintentionally make things harder than they should be. 

I honestly don’t know how others do this for years. And I certainly don’t know how we lasted this long. 

I just wish we had it easy. Even though we are together, I still often feel alone.

Life shouldn’t have to be this way.

Author’s Note – Please be advised that this post was not meant to “trash the staff” in anyway, but to discuss the topics that relate to keeping a relationship when one relies on care staff for the basic tasks a boyfriend can do. There is a need for funding and more opprotunities for those wirh developmental disabilities to have access to the community. Bill staff is typically good at taking him out, but at times things get hectic. I understand those situations from being a paraprofessional a few years back. I do want to thank them for all they have done. But I guess in my own selfish way I want them to do more,  which honestly shouldn’t be my call to begin with. I hold Bill to a higher standard than most people give him credit for. And sometimes, I tend to forget his needs outweigh my own. To any who have felt offended by this post, I do apologize. But I hope this post opens up a better dialogue for Bill and others who rely on staffing who are going through the same situations in relationships. Together we can make a difference.


One thought on “The Space Between

  1. Ya wanna compare? How is this….What did you send gmom for xmas? What about daddy? How about me? What did ya get for Amanda Rose? What about Lumpy? You haven’t sent anything for us here in Penna . Yet you know we still love you. Do you un derstand that sending THINGS does not matter? AS long as you still have that person in your life. Materialistic things will come and go Amanda. Eventually Bill will go….and all you will have left are the memories. MAKE THEM COUNT! Stop looking for THINGS from him.OK? Daddy never got me anything for xmas but a box of jellybeans! But oh well…life still goes on…

    Love ya!


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