You know those shirts that say “I run better than the government”? I need one. And I can’t even walk. If I did my job as poorly as any given government agency, I would have been fired years ago.
This past Saturday I received an envelope from the Department of Health and Human services, which is never a good thing. Inside was a letter telling me I had been deemed ineligible for MaineCare services. MaineCare, Maine’s version of Medicaid, is the only insurance carrier who covers Personal Care services. That means that private health insurance – like what you receive through your employer – wouldn’t cover it (which is a topic for another post). Because of the income limits on Medicaid, that means many people with disabilities have to hover around the poverty line just to get the care they need. Some states offer a “Buy-In” plan, which means that those with disabilities who make “too much” can pay a given amount to remain on the state insurance.
One of the easiest ways to qualify for MaineCare is to receive SSI (Supplemental Security Income), which is given to any number of groups who qualify based on ability to work, and income. Because I make “too much” (trust me when I say it’s not that much), I no longer am eligible for SSI to help me cover my extra disability expenses associated with maintaining employment. When I found out I would likely be found ineligible for SSI, I confirmed with several people at both the Social Security Administration and DHHS that this would not affect my MaineCare services which I rely on for both health insurance and my personal care needs. I was told that it would not.
What I was not told was that I needed to fill out new paperwork to determine my disability status. I was not told that I would have to return paperwork to ensure I was disabled (despite filling the same paperwork out probably 10 times over the last 8 years) in less than a week or else I would lose my medical coverage. I was not told that I would receive a letter telling me I was ineligible, or that that letter wouldn’t include any explanation as to how that determination was made, or that that letter would have nothing but a link to the Health Insurance Marketplace – a marketplace full of insurance carriers who don’t offer anything that I need. I was not told that I would have to spend my Monday morning repeating my social security number over and over again as I was transferred from department to department to figure this out.
In any private organization, somebody would be held accountable. But this isn’t a private organization – it’s the government. So really, I expect nothing better.
I’m always pretty open on social media about my disability. I mean, I can’t really hide it. I talk about lack of public access, or funding problems, or not being able to open jars and Pop-Tart packages. But one thing I don’t address publicly very often is that having a progressive muscular disease can be pretty damn scary.
I don’t talk about it a lot because, truth be told, I don’t think about it all that often. It doesn’t affect my day to day life, and usually the progression is slow enough that I don’t really notice it until suddenly I can’t do something I used to be able to. I generally don’t think about the fact that I could be one illness away from losing the ability to independently breathe overnight. Whenever I say things like that I feel like I’m being a fatalist or morbid but the fact of the matter is it’s just the reality of the situation. Avoiding the topic isn’t fair, because it’s okay to be scared and it’s okay to let others know you’re scared – we all feel it sometimes, and it doesn’t have to be disability related.
I have been so blessed with friends who are willing to share the burden with me. I may get scared but I never feel isolated. I met my best friend when she was 15 years old – and let’s be real, what 15 year old girl wants to deal with doctors appointments and talking about how a common cold leads to pneumonia? None of them. But she did, and over the last 6 years she has been through so much with me that I’m surprised she sticks around. This goes for all my friends. Last night when I told them I was nervous about an appointment today, all of them offered to drive and go with me. Not out of guilt or pity, but because they knew I would do the same thing for them.
If I could offer any advice to anyone – disabled or not – it’s to build a support system. Surround yourself with people who you can discuss your fears and weaknesses and insecurities with, and make sure they can discuss theirs with you. There should be no shame in being afraid of things, and I’ve found that more often than not talking through the things I’m worried about with someone close to me can calm me down enough to start thinking more clearly instead of spiraling into an anxious mess.
Sorry for the heavy Thursday morning post…but at least tomorrow’s Friday?
When I did my first “How Do You Do It” post, I had no intention of making it a blog series. Honestly I didn’t really feel like I had all that much new to offer. But, I love making lists and using GIFs, and it turns out I actually do have some cool skills I’ve picked up through my years of being handicapped.
One of these skills is being able to ask for what I need – whether it’s a glass of water or proper medical care. This is something that I still struggle with, and I think most people do regardless of physical ability. Below are a few things I’ve determined to be helpful. 1. Determine whether you actually need it
It can be hard to confidently ask for something when it is something you can do without. My life is a lot of weighing my choices: Will the person doing this for me be more uncomfortable than I currently am if they don’t do it? If the answer to that is yes, I generally don’t ask for it or will wait until it’s a little more convenient. Which brings me to point 2.
Asking for a drink of water right after someone has gotten back from being in the kitchen is not a great call. I was awful at this as a kid, mostly because I was awful at #3.
3. Planning ahead
If I know that I’m going to need a ride somewhere in three weeks, I try my best (though I often fail) to ask people ahead of time. This gives them the opportunity to shuffle their plans, or tell me they can’t help without feeling guilty.
4. Be confident
This mostly comes into play when I’m advocating for myself with doctors. After 18 years of dealing with my disability, I can confidently say that I know more about it than the doctors in my area – through no fault of their own, it’s just the way the cookie crumbles. Because I am so confident in this, I know that I can ask for exactly what I need and don’t have to take “no” for an answer. It makes it easier to ask for what you need if you’re confident that you know what you’re talking about!
5. Explain the end goal
It’s great to ask for help in achieving just about anything, but if the person you’re asking for help doesn’t know what you’re trying to achieve they may not be able to help you! One example of this that comes to mind is when I ask for help repositioning in my wheelchair. My dad always gets frustrated with me because my go-to sentence is “Can you move me?” How much good does that do? It’s much more useful to say “My hip is hurting me, can you help me move so I’m not putting pressure on it?” It makes it easier on everyone.
This isn’t strictly a disability problem – the more specific you can be the more quickly you’ll be able to work with someone else to get what you need!
Hopefully even if you’re not disabled, this was helpful. People really do want to help – you just have to be willing to ask!
Today’s my daddy’s birthday, so when you’re done reading this be sure to go wish him a happy b-day!
The real point of this post, though, is a thank you. Some of you may not know this, because really in the scheme of things it’s fairly irrelevant, but my dad is actually my step father. I set him up with my mom at my first “wheelchair party” when I was 4, and then was a part of their wedding when I was 7. But really, he’s the only man I ever have and ever will call my dad.
It’s pretty uncommon to find a young man (well, he was young at the time) who is willing to date a single mom. I’m pretty sure that “must have a child” isn’t usually on the list of must-have qualities in a future partner. But a man patient enough to date a single mom to a child with a disability? That’s like finding a unicorn. My dad’s a really smart man so I can’t imagine he didn’t know – to some extent – what he was getting into. He was signing up for hospital stays, medical expenses, and helping with personal care for a daughter who wasn’t really his – all while working a full time job.
I’m not saying all this for y’all to pity him, or to make our life sound terrible. I’m writing it because he would never complain about the extra work, and there isn’t a day that goes by that I’m not appreciative for all my dad does for me. He never makes me feel like I owe him anything – even after he’s worked an 11 hour day, and then has to help me take a shower during the little downtime he has. He’s so patient and, although like all families we have our problems, my parents, brother, and I all live a fairly “normal” everyday life.
So, happy birthday Daddy! I hope you had a good day shopping for vinyl records like the old man you are!
If you ask just about any dog lover what it is that they love so much about dogs, they’re practically obligated to mention the phrase “unconditional love”. Unlike most things – although I might be biased – I am inclined to classify this as fact, not opinion. Even puppies who have been raised in abusive homes are known to try to protect the very humans who hurt them.
Naturally, this is important to anyone. It is human nature to want to be accepted and loved. As a person with a disability I will take that one step (tire rotation?) further. No matter how great my support system is – more on that later – there will always be parts of my disability that are inconvenient to those around me. Do you know who has never cared even one bit about my disability? My dog. Actually, any of my dogs. I’m pretty sure it would be literally impossible for them to care any less – and that is an amazing feeling.
Growing up, even before I used my wheelchair full time, I had a dog. He adjusted very quickly as I moved from a manual wheelchair to an electric chair; some might see this as an anomaly. I thought so too…except my post-high school roommate’s dog, who didn’t grow up with wheelchairs, never had an issue with it either. In fact, without much coaching she learned to place her front paws on my lap so I could easily pet her. Everyone I knew was blown away by the fact that my brand new Pomeranian puppy taught himself to ride around on my foot plates. I thought somehow this made him special…except my new chihuahua puppy taught himself the same thing. To them, the wheelchair wasn’t odd or inconvenient; it was just part of the human who they loved so much.
The fact of the matter is that there’s no human that could ever be as selflessly loving as a dog. It’s not in our nature to overlook “flaws”; it’s something that we generally have to work towards. Dogs, though? We don’t deserve dogs…but I’m sure glad we’ve got ’em.
Side note: Basically this whole post was an excuse to share pictures of my dogs…because, well, dogs.
I talk often about how I don’t usually relate to other people with disabilities. Since I’ve started openly saying that, ironically, I’ve met tons of others I totally relate to. It turns out that by putting your truest self out there, you’re much more likely to attract others with similar views. While I always value opinions that differ from mine sometimes it’s nice to have people who just get you.
One of the less-than-popular views I hold is that, as a disabled person, it’s okay to accept compliments without assuming they were given out of pity. So, that bring said, I’d like to offer my fellow crips a how-to guide on handling compliments (even “pity” ones):
2. Assume its sincere, because you really do kick ass
3. Say “thank you”
4. Carry on with your day
That’s it! 4 easy, no-stress steps to accepting compliments without being offended by the kindness of others.
In 2011, a friend of mine who knew I was interested in photography suggested I check out Katelyn James, a young wedding photographer. At that time I had no idea how important Katelyn would end up being in my life.
For about 3 years after that, I was convinced that I was destined to be a wedding photographer. Not only that, I was going to be the next coming of Katelyn James. (Take it easy on me, I was in the middle of an early onset quarter life crisis.) It didn’t matter that I wasn’t physically capable of being a full time wedding photographer, or that my personality was entirely different from hers. All I was focused on was how much her blog posts (this is the one that started it all) and her photos inspired me, and that I wanted to do that for others. It wasn’t until I had been at my current office job for over a year, and gone through the depression associated with realizing that my disability would prevent me from achieving this dream, that it hit me.
My purpose is not to be a photographer. It is not to model my personality off of someone I didn’t know beyond their internet persona. My purpose is much different, but equally as important. For years people have thanked me for the small bits of insight into the life of someone with a disability that I offered through my social media. The time has come for me to transform that into something more meaningful.
After 5 years, I was able to meet Katelyn and hear her speak just over a week ago, and she said something that really resonated with me: pain has purpose. My struggles with my disability (and with life in general) offer many teachable moments for myself and for others. I truly hope that by sharing both the good and the bad parts of my story I am able to help even one person – with or without a disability. I’m fairly certain that that is my purpose.