There are several moments I wish I could recreate: my high school graduation; graduating from college; the day before my Dad passed away; a trip to California Adventure the beginning of July 2011 where I watched World of Color, and those are just to name a few.
I can absolutely 100% state that there is one moment I wish I never experienced, nor ever wish to experience again.
I always hoped for a traditional life. Marriage to a good man, children, a dog or a cat, I would have a career that offered something to the world, security, support, teamwork.
About 6 years ago this hope was destroyed. I am now dependent on others, unable to work, don’t have a career or security, cannot take care of myself.
Yet as I am reading this post now, why can’t I still have those things?
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I’ve lost my way. And my hope.
I’m struggling but trying to find my way back.
Being alone is one thing.
FEELING alone is something entirely different. I’m still broken about the judge’s decision. I have no hope.
I sure wish my dad were here so he could give me a hug.
When I look at the most recent picture/update (on my GoFundMe site), my eyes are drawn towards my head. (To me) I only see my head. I only see it bandaged. I only see me, laying in the bed alone, because I was the only one who was walking through this experience. I remember my mom wanting to take a picture of me and I flat-out refused. A picture of this? Of this moment? Why? Who wants to see this? Who would want to even remotely remember this moment in time? She took this picture the night before the first brain surgery. But she didn’t give up. In hindsight, I’m glad I allowed her to take it, but I just couldn’t look at the camera. I didn’t want anyone to see me like this. I think the picture made it too real. The camera made it too real. Up until that next morning, I was still living in denial that I wasn’t going to have to have my skull cut open.
I have more pictures of after surgery. The incision, its healing. I looked at a few of those pictures a few nights ago and oddly enough, I felt a small out-of-body experience looking at those pictures. I didn’t really identify, or know how to identify, with that person. The person who had their skull opened twice. The person who, almost 3 years later, is still dealing with the effects of a brain tumor and rare disease diagnosis. In my defense, I know I’m better than I was. And, with that being said, that gives me hope that in more time I’m going to be even better in the future than I am today.
Edit 5/8/17: I was going through my Drafts folder and found this post. So funny how this post brings up so much anxiety even from 3 years ago. I am so thankful I have this blog to document my life.
I know I have been pretty quiet here as of late.
I wish I could say it was because I had nothing to write about. Unfortunately, that’s not the case.
Next week is my disability hearing.
I have worked so hard to stay positive and hopeful. It’s a moment by moment deal for me. I find ways to distract myself when I start to stress out about what’s going to happen before the Judge.
Working on keeping my head down and plugging along.
I’ll be back very soon.
I think most of the Internet knows of my financial distress – and to those who are important and trustworthy, I don’t keep it quiet. I do try to focus on the positive, yes. But, the reality of life with brain tumors and a rare, hereditary cancer syndrome is tough almost. every. day. (I’m not discounting the hardships other people face.)
But, I digress.
Trying to steer this post from being “too ranty”. hehe
Recently, I was on Twitter and had shared my gofundme link or had tweeted something brain tumor-financial hardship related. Someone reached out to me and suggested I get in touch with this organization.
I got on that in a hot second.
To be honest, it’s difficult for me to be positive (or hope) for good things to happen because my life doesn’t work that way. My life is hard. I’m alone. I’m managing my life as best I can but forced to depend on my family, which is limited at best. How I haven’t had to file bankruptcy is beyond me. But I don’t think I can put it off much longer, either.
Anyway. I contacted Mission 4 Maureen immediately. By their grace, I was granted financial help. Thank you Mission 4 Maureen! Thank you for what you do to help those of us living with brain tumors. And, I ask you dear readers: Please visit their website. If you do Facebook, please consider “LIKING” their page and support them in any way can.
I thank you sincerely.
Check out this link to see some new items in my storefront.
I am very thankful for your support.