30 Things to Do While I’m 30

Some people do a “30 things to do before I turn 30” list, well, I’m a little late for that since I’ll be 30 in a month.  When I was 15, I did make a goal to visit all of the continents before I was 30.  I made it to 5 out of the 7 before my chronic illnesses prevented me from international travel.  While I still dream of visiting the final two (Antartica and Africa), it won’t be anytime soon.  Instead, I decided to make a list of 30 things to do while I’m 30.

1. Make a website about cavy genetics. ✓
2. Hang portraits of my pets (past and present) in my hallway.
3. Read the rest of the Harry Potter series.
4. Learn basic conversational French. ✓
5. Bake an apple pie and crust from scratch.
6. Take a picture every week and crop/edit it to learn new skills. ✓
7. “Pay it forward” to someone else. ✓
8. Earn a title on one of my dogs. ✓
9. Crochet a dinosaur.
10. Blow bubbles when it is below freezing outside.
11. Make a planner/organizer. ✓
12. Visit a museum I’ve never been to before. ✓
13. Find 30 geocaches.
14. Release a new travel bug for my birthday. ✓
15. Finish a jigsaw puzzle (500+ pieces) by myself.
16. Become a volunteer at the Humane Society. ✓
17. Make paw print art with my pets. ✓
18. Rewatch all of the House episodes. ✓
19. Wear pajamas for a whole day. ✓
20. Try a new food each week. ✓
21. Put my books on shelves in Dewey Decimal order.  ✓
22. Visit an Antartica exhibit at the zoo.
23. Visit an Africa exhibit at the zoo.
24. Fly a kite.
25. Blog once a month. ✓
26. Try to grow Brussel sprouts. ✓
27. Plant a tree. ✓
28. Grow a vegetable that is a “funny color” (purple broccoli, white carrots, etc.). ✓
29. Write a letter to my 40-year-old self.
30. Make a list of Things to do Before I Turn 40 (and do them before I turn 40, not after).

I’m Not Your Inspiration

The posts are all over the internet, giving people warm, fuzzy feelings.  A grocery employee squishes a loaf of bread and the patron writes a letter to the grocery, but she isn’t angry, she praises the grocery for hiring an Autistic employee.  A man buys a cake and asks for something written on it, but when an Autistic employee writes on it in spite of not being supposed to, he shares the story with the world.  A disabled man wets himself, but a non-disabled person comes to the rescue, escorting him to the restroom and calling for clean clothes.  I could give hundreds of examples that circulate daily.  But I won’t like a single one because I hate them.

A friend recently shared the story about the lady in the grocery with squished bread.  The employee counted her change multiple times, squished her bread, and she went home and wrote a letter to the grocery praising them for hiring an Autistic employee.  I won’t like it because I don’t want to give them traffic.  But I do want to discuss it and posts like it.

What is wrong with it? First of all, the lady assumed the guy had Autism. She didn’t know, he could have been having a bad day, he could like numbers, he could have anxiety, he could have Tourette’s or a stutter or OCD. Maybe he is bad at math or it was his first day at work or he miscounted his drawer yesterday and was nervous?  Maybe he justed liked squishing bread or was bad at bagging.  I mean repeating stuff and squishing bread isn’t exactly in the DSM 5.

Now, that part aside, let’s look at what makes this story worth sharing. Is it because someone with Autism did something awesome? Because it is spreading awareness or acceptance about Autism? Because it is helping others understand what it is like to live with Autism? Nope, none of those things. It is literally shared because it makes “normal” (ie. non-autistic or non-disabled) people feel warm and fuzzy inside because they aren’t Autistic.

Let’s replace the guy in the story with a non-disabled person. Suddenly, the story is uninteresting, isn’t it? It’s pretty boring when it is about a normal person writing about a normal person who counted some stuff twice and squished some bread. It is only when a normal person acts like a decent person should to a disabled person that non-disabled people get all squishy inside and feel the need to share the story.

Imagine you were the cashier – would you want this story shared about you? What if it were your child? Your parent or sibling? We might be Autistic, but we are people. We have lives and feelings and emotions and believe it or not, we don’t exist solely for your inspiration.

This type of story is known in the disability community as “inspiration porn.” They are at best pointless and at worst ableist and objectifies the disabled. The sharing of this type of story needs to stop.  A good way to draw the line is to replace the disabled person in the story with a non-disabled person.  Does the story suddenly become really boring?  Then don’t share it.  That story about the grocery store is a great example of this.  On the other hand, the story I just read about the four Paralympians who ran faster than the Olympians at Rio in the 1500m?  That is pretty darn cool disability or no!

A Rant About Latex

I hate latex.
I hate going to the ER.
I hate that I can’t go places without the (very real) fear of a reaction.
I hate that my body thinks latex is going to kill me.
I hate that my body tries to kill me because it thinks latex is going to kill me.
I hate that latex is in everything.
I hate that latex is everywhere.
I hate the after effects of a reaction when I don’t use Epi.
I hate the after effects of using an Epi.
I hate taking prednisone after a reaction.
I hate that if I don’t take prednisone, I have a high risk of another reaction.
I hate that prednisone totally messes with my mood, sleep, and everything else.

*this rant brought to you by another lovely reaction to latex followed by the lovely prednisone…did I mention it messes with my moods?*

Good News, Bad News, and a New Diagnosis

Well, it seems that the fainting I mentioned in the previous post is here to stay.  I’ve had four different medical tests to determine the reason for the fainting and they revealed both good news and bad news.

The good news is that my heart is structurally sound.  This was a concern due to the fact that I have been diagnosed with Stickler Syndrome.  A related disorder, Ehlers-Danlos Syndrome (another genetic connective tissue mutation), often affects the heart’s structure.  After a echocardiogram and a stress test, they have concluded that as of right now, my heart looks good – both at rest and during exercise.  I do have occasional problems with the electrical signals.  I had a 24-hour ECG (Holter monitor) which showed that when I had symptoms my heart’s electrical signals weren’t working exactly right, sometimes causing an extra beat, sometimes causing a beat to come too early.  Right now this is happening less than 1% of the time (according to the test) so isn’t a concern.

I also have been given a new diagnosis after “passing” a tilt table test – passing out that is!  A tilt table test is when you are strapped to a table which is then tilted up so that you are in standing position but still strapped to the now vertical table.  You are then left in this position while your blood pressure, heart rate, etc. are monitored.  To “pass” you pass out – which I did after about 15 minutes.  The idea is to initiate an episode to achieve a diagnosis.

Following the test, I was diagnosed with Neurocardiogenic Syncope.  Basically, for some (unknown) reason, after a random trigger like standing, holding my arms above my head, being overheated, etc. my heart rate drops and I pass out to restore blood flow to my brain.  Fortunately, I wake up as soon as my body is horizontal.

I was also told by the nurses that I was “the most pleasant passer-outer they’d had yet.”  When I woke up after passing out, I said a very chipper, “Hi!” then when they told me I had passed out and they got the information they needed I said, “Yay!”

Five Years

This is a picture of me, five years ago.  Five years ago, I had a surgery on my arm that was supposed to stop the tingling from a pinched nerve and prevent nerve damage.  Five years ago, that surgery damaged my nerves and sent my autonomic nervous system into a tailspin.  Five years later, I’m still experiencing the pain and affects of that surgery, and they aren’t getting better, they are getting worse.

This is the first year that I actually didn’t think about the fact that it was the anniversary of my pain, the day passed just like another holiday.  But now, I think about it and see how far I’ve come since I first started this blog as things were beginning.

First, I look at my post, “I Can Niko” I was living with the use of one hand at the time, and posted some of the things I couldn’t do.

“I realized the other day that I had not used my left arm normally in more than six months. I have not folded my own clothes, zipped a Ziploc bag, or clapped my hands in half of a year.  
there are so many things I can’t do and may never be able to do. I think of the brand new pair of boots in my closet that I can’t tie, the half-finished scarf on my knitting loom, or the new material I can’t quilt. I pondered of all the frustrations I have faced and will face, including toilet paper out of reach, containers I can’t open, and meat I can’t cut.  I still feel a longing for certain things I can’t do with one hand.
The thing I long to do more than anything is curl up on my left side, how I used to sleep and sleep one, long peaceful night.”
I can do all of those things and for most, I don’t even think about them.  I tie my shoes daily, forgetting the months I wore elastic shoelaces because I couldn’t tie my own.  I cut my meat at meals without thinking of how I would cry because I had to have my meat cut like a toddler.  I fold my own clothes, zip Ziplocs, reach toilet paper, and open containers easily without remembering the hard times I had.  Most nights, I sleep on my left side, though my nights still aren’t quite as peaceful as I might wish.
Oh, and those Niko boots?  Yup, I can wear them, tie them, and they’ve been on many adventures!
Going back and reading my post “1,000 Little Steps = 1 Big Step” is more than a little ironic.  After writing a few more things that I’ve accomplished, I wrote:
“Am I cured? Am I perfect? No, but I’m taking little steps toward improvement. And that is all that I ask, that I continue to head toward the goal, a little step closer each day. I need to continue without getting frustrated because I’m not growing enough and be content to grow a little step each day.”
Looking back, I can finally see the big step I’ve made!  I’ve made it 1,000 little steps for my first big step – now for 1,000 more for the next. I can’t wait to see what awaits me!