The Vacationing Sort of Hope

 

“Fauxtographer” ~ have you heard that one yet? I have .

Silly.

People are silly.

A couple of years ago I was a candidate for an experimental treatment which my insurance did not cover. At the time, I was using forearm crutches daily and occasionally a wheelchair. The pain from my disease was off the charts. This treatment, IV Ketamine infusions, offered a potential reduction in my symptoms. But it came at a huge cost. When some good friends, family and community heard about my opportunity, they rallied around me and instantly began fundraising for “Hope for Hope”. I felt so blessed. So lucky, So humbled.

I was fortunate enough to have had those events raise enough to carry me through quite a few trips to Philly and back. My husband and I have had to use a pile of savings to cover a few treatments that I’ve had too, all in the hopes of me having some sort of semblance of a “normal ” life. The good news is, it’s working. I haven’t had to walk with assistive devices since I began my treatments. My pain levels are usually tolerable and things are under control for the most part.

Sadly, there are a select few people who “donate” to a cause for show or for the reason of feeling entitled to something or truly, I’m not quite sure why. I was raised to give of yourself even when you have nothing to give. And I have done so at every opportunity. Yet ever since my fundraisers, people have treated myself, my children and family differently. They question what my children wear, where they go, what they do. Same holds true for me.

One precocious young girl said to my daughter in middle school a year or so ago ” Wow, you got new shoes? Didn’t we have to have a fundraiser for your mom like a year ago?”  People comment on the fact that my children play sports. Or the fact that they go out with their friends. They question where “their $20” went. It is very difficult for me at times to bite my tongue.

So when my brother called this past winter offering my children and I an all expense paid vacation to fly out to his wedding in South Dakota over the 4th of July, I was hesitant. Very very hesitant. I knew what was coming. The questions, the snide comments.. the looks. I’m so proud of my baby brother, he does quite well for himself. His now wife is also very successful. The fact that they could fly our entire family out to spend a week with them and house us all was beyond a generous gift and an opportunity I couldn’t pass up for myself and the children.

Our very first family vacation in over 10 years came at a terrible time. It was the peak of Legion Baseball season~My “Summer Love”- The Oley Topton Patriots. My family takes their athletic commitments very seriously. Missing a week would be unprecedented for a Distasio.  And I was truly enamored with this team. They were in the fast lane to a championship I was certain.

Sure enough, the minute I announced that we would be heading west, the comments started. “Oh, you’re going on vacation? How’s that possible”… as if it were anyone else’s business…

Though I was apprehensive, that week in South Dakota turned out to be just what the doctor ordered. I had really never traveled before. I had coffee on the patio with my sisters in the morning and dinner with my parents and the whole extended family in the evenings. It had been years since “the James Gang” was all together! The scenery was breathtaking. The creatures were beyond things I’d seen here in PA. The food and family were everything I’d hoped they would be. I even climbed a rock. Me. “the disabled housewife”.  Who knew?

Why am I sharing all this? Stop and think before you speak , people. If you don’t want to give of yourself, don’t. If you question peoples motives/ genuineness, then don’t be a part of something. No one wants to live their lives feeling like they owe you explanations for every single thing they do, particularly if they are already sick. It’s just added stress they simply don’t need.

My father is in the process of organizing another “Hope for Hope”.  God love him, he did it without even asking me. I initially told him I didn’t want any parts of it. Then our car died….. and in trying to fix/ get a new one I couldn’t even book my next treatment.  Not that it’s any of anyone’s business.

Then someone said to me ” maybe you could use Hope for Hope for a new car.”

I can assure you my funds went for my care and well being.  They are all gone now.

You can stop asking.

People really are silly.

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4 thoughts on “The Vacationing Sort of Hope

    • ABSOLUTELY. You’d be surprised at the crap people say..
      ” But you look so good!” ~ and I am dying to say ” Yes, because you can see my swollen {insert any diseased internal part here} ”
      I LOOK good because I force myself to. I just don’t understand mean people. I hope I never become one. Ever. ❤ Oh and I got the port just because it looks soooo pretty sticking out of me.

  1. Hope-Haven’t spent much time with you but I am very very happy that things are going well and continue to do so. People who give from the heart and seeing they’ve made a difference are the lucky people!

  2. We had a discussion one time regarding the use of the Handicap stall. My mother (who is in a wheelchair), feels that they are there as a ‘nicety’ for those who need them, not as a ‘right’. If you are in a wheelchair, you should not wait until the last minute to go and therefore if you have to wait for the stall, it isn’t a matter of urgency. Now, I know the whole ADA thing – the facility is obligated to provide them, but they are not for the exclusive use of those who are handicapped. It is obvious if you have ever been to a concert event and stood in line for the ladies’ room that the HP stall is fair game for the next in line. Additionally, most people are very generous in allowing someone in a wheelchair to jump the line. Where people get downright snitty is when there is no line, an obviously handicapped person is waiting because someone is in ‘that’ stall, while others are free, and a seemingly ‘healthy’ person exits. I’ve heard the comments and people just are not nice. They should keep those comments to themselves. I have a friend who has a colostomy bag. She looks very healthy, but when she needs to work with her bag, she needs a little room and uses the HP stall. She has told me that people are extremely rude about it. You just do. not. know. what others are having to deal with.

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