In just over two weeks, I am going to be 40 years old. This is a fact that I'm having a difficult time warming up to and it's also causing me some distress because I never claimed I was going to age gracefully and I most assuredly am NOT.
I can run a lot further than I could at 30. I'm not changing diapers or chasing a toddler like I was at 30. But 40 is a different animal for a lot of reasons. Mostly because at 30, I thought I was just fine... and now I have to remind myself that I will be.
Last week, my employer handed me an insurance form and asked me to have my doctor at Iowa fill it out and return it. Again, it seems the insurance company saw my appointments and got a little freaked out: "Uh oh, this woman is gonna cost us money." They are now quoting my employer an astronomical hike in the cost of our company insurance plan. Affordable insurance for my employers to provide for us hinges a lot on this form.
I hate that feeling.
And while the folks at Iowa promptly filled out and returned the form, it is a reminder to me that no, I will not be costing the insurance company a bunch of money because there are currently no treatments for Usher.
It's an ugly feeling - this sadness about what is beyond my control blended with this irrational sense of responsibility for costing my company so much money (I didn't even hit my deductible this year. That's how much money I DIDN'T cost them).
I have been in a funk ever since.
Foundation Fighting Blindness has been running a campaigh - #HowISeeIt is supposed to drive awareness and raise funds. It's been pretty amazing to see celebs active on social media promoting FFB and driving awareness. It's no ice bucket challenge, but I'm not a fan of being cold, so I'm alright with that.
It's been a bit disheartening to see the backlash against the Foundation and against the campaign.
I read the comments on Facebook (oh, silly girl, never read the comments) and I'm... frustrated. I'm angry.
There are some people who take issue with the #HowISeeItChallenge because they see it as fear mongering, they take issue because they feel it implies there's something wrong with being blind - as though that makes them "less than." The criticism of the Foundation has been harsh and it's been confusing to me because since my diagnosis, I have found the FFB to be tremendously supportive, helpful and committed to their cause.
Look: It says it in their name - Foundation FIGHTING Blindness.
It is their mission to end vision loss caused by retinal disease. To expect their mission focus to be anything less than trying to eradicate disease is ridiculous - as it's WHAT THEY DO.
No, it doesn't mean you're less than or inferior if you're blind.
It's just that NOT ALL OF US WANT TO LOSE OUR SIGHT.
(Let me say that again)
Some of us are TERRIFIED of losing our vision. Some of us DON'T WANT to lose any more sight. And some of us are going to fight like hell to support the people who are trying to find treatments and cures.
Why this came as a shock to me, I'm not sure. The same sort of culture is prevalent in the hearing impaired communities as well. But I've never had deaf pride. I've always hated not being able to hear well.
And you better believe that I will fight this vision loss as strongly as I can.
Fall is here and it's getting darker earlier and the sun is taking longer to rise in the morning. I love fall - the end of sweating every time I step outside. The darkness is already getting to me, though.
I may never regain what I've already lost but I don't want to lose anymore. Every time I start thinking I'm doing okay, I hit a patch of not-okay-ness. At 30, I had no idea any of this was coming and I'm staring down the barrel of 40, all too aware of how much has changed for me.
It's a tough pill to swallow, and I'm just not ready to accept it yet.
I'm not going to allow others to make me feel guilty for not accepting it. And that's how I see it.