AT/Software for High School andCollege Students with Disabilities

Having a disability or being chronically ill in college comes with many challenges: time management, memory, missing class, taking notes, studying, typing papers, reading textbooks and more! While this by no means will be an extensive list, here are some applications, software, and modifications that you might find helpful broken down by task. *Note: if you have an IEP/504/ College Disability Accommodations, some of these may be available to you for free through your school or may be covered under insurance so talk to your case managers!*

Time Management:

Timeglass (Free)

This is a simple application that allows for the use of multiple timers at once, including multistep timers, repeats, customizable icons, and a visual timer. There is a limited feature free version on iTunes.

 
VisTimer Lite (Free)

Another simple visual timer application that has customization options such as display size, circle color, alert sound, and time warnings. Available in iTunes Store here for free with ads, upgrade available. Compatible with iPhone and iPad.

 

 

Things 3 ($9.99 iPhone/Watch)

I have tried many to-do list-esque applications over the years and while most start off great I find I stop using them after a week or so because they are too complex, don’t sync well between devices, or don’t help. Things 3 is the exception. It has iPhone, iPad, Apple Watch and iMac/Macbook compability, iCloud, Reminders and calendar syncing, it clean and easy to use and helps me immensely with homework, projects, things I need to buy, and my “remind me to think of…”. It is available here.

Why I love it:

• items are easy to move, categorize and mark as complete
• a log book is kept for your completed items for the inevitable “oh shit I didn’t actually do that” moments
• it syncs well with devices
• it syncs with iOS Reminders, Calendar (including google), iCloud, and various devices flawlessly
• You can set due dates, reminders, and assign a time to complete it
• You can make subcategories
• It helps a lot with packing and grocery lists too

Taking Notes:

Microsoft OneNote (Free)

Microsoft OneNote is part of the Office365 suite and is like Word, Powerpoint, and a Notepad combined. It offers the users to create subject sections, draw freehand, add tags such as “question” “to-do” or “follow-up”, simultaneously record and take notes, highlight, change page color, and more! Additionally, if used on Windows, “Learning Tools” is a free package download that includes features such as text-to-speech, focus mode, font-spacing, page coloring options, reading tools for low vision, dyslexia and other print disabilities, and more! I find OneNote to be the most useful one touch screen devices, especially for working out things like math problems that are hard to type out correctly or quick sketches. OneNote is also integrated with Office Lens (below).

               

Notability ($9.99)

I have only just started using Notability by Ginger Labs instead of OneNote and while the two applications have large amounts of crossover in terms of functionality, I prefer Notability’s design as well as ease of integration of pictures, better functionality of audio recordings, more functional highlighter, and overall more functional to use and sync.

Writing/ Reading

Wrise ($59)

Wrise is an accessible word processor for Mac that includes word prediction, text-to-speech, tags, and an export to iTunes feature. It is made by Assistiveware and is switch compatible. It also has tools to help people who struggle with similar sounding words, spelling, and reading.

Dragon Dictation (Naturally Speaking- $69.99)

Dragon provides one of the best speech recognition/dictation softwares out there. For those with fine motor issues, hypermobility in fingers, or who just prefer to talk rather than type, this is an amazing software. Dragon works with most common word processors (Word, Notepad etc) and can also be integrated into social media and web browsing.

Studying

Quizlet (Free)

Quizlet is a free study tool that allows the user to make e-flashcards, practice tests, and learning games all from a study set. The free version allows for pictures to be used on flashcards as well but you are limited to a small database. Additionally, study sets can be shared with classmates, worked on collaboratively, or you can search for pre-made study sets by other users. Some of the really beneficial tools of quizlet are: web based with app options, several different modes for learning from traditional “flashcards” to an adaptive learning course that prepares you for your exam. As someone with a learning disability, the ability to have the cards/ questions read to me when I want to is a major plus.

Crash Course Videos (Free)

These videos are fantastic! While you are limited to the topics they cover, I find them informational and think they do a great job of summarizing and presenting information without being too complex. These are great reviews for science courses, history, and other introductory courses. Also just fun to watch to learn something new. They even have videos on study skills!

Khan Academy (Free)

For more specialized informational needs, especially in math and science, Khan Academy does a good job of summarizing, providing examples, and covers more discrete topics.

Other

Office Lens (Free)

Office Lens is a free mobile application (integrated with OneNote) that gives you a scanner and optical character recognition (OCR) in one application — and for free. I use this app all the time!

Things it can do:

• take a picture of a whiteboard at an angle, auto-crop it, and perform OCR (scans and converts characters to type)
• take a photo
• take a picture of a business card, crop it and perform OCR
• save anything you snap to camera roll, OneNote, PDF, email attachment and more
• scan and read a document to you
• scan a document, perform OCR, send document to OneNote, then edit the document
• compatible with VoiceOver and switch access
  

Keeble Accessible Keyboard ($24.99)

Another product of Assistiveware, Keeble is for anyone with vision issues, limited use of hands, dyslexia, and switch users this app is an accessible keyboard that can be added just like a foreign language or emoji keyboard and allows for customization of color, font, word prediction, quick phrases, auditory feedback (speaks what you type), Open Dyslexic font, ALL CAPS, and arrangement (ex. switch user making keyboard in frequency order as opposed to QWERTY).

 

 

Hope some of this helps!

 

 

I moved… bear with me…

Hi all, I will be continuing my blog here for various reasons. I will eventually get my posts moved over here but until then here is a meme to hold you over until the next post!

 

 

Majoring in Chronic Illness Management with a Minor in Applied Nursing

Seriously guys. Every time I hear those commercials for continuing education that say things like, “get credit for military experience!” or “use job skills to get an accelerated degree!” I think… man… if only they gave out degrees keeping yourself alive with chronic illnesses. I have a lot of spoonie friends and every single one of them should get to add C.P.P. (certified professional patient) to the end of their title in addition to an honorary nursing degree for many of them. For those of you who don’t get a peak into this aspect of my life, here are some of the behind the scenes tasks needed to function.

Medication Management

This takes up SO. MUCH. FREAKIN. TIME. You have to make sure all your meds are cleared with all your specialists because they don’t chat, you have to make sure no new meds will kill you (allergies, interactions, effect on other conditions), you have to get the script, send it to the pharmacy (assuming they have it), pick it up or set up shipment, keep track of refills, separately order all your OTC meds and supplements, sort out medication or check if medication is presorted correctly, make sure any ED staff, EMS, or doctor can access what prescriptions you are on at any point in time, fight insurance, pay bills, likely deal with 2-3 pharmacies, infusion companies, specialty pharmacies, mail order pharmacies, and actually remember to take them and have rescue meds with you at all times. But yeah… just that. Add secretary and applied pharmacist to your CV.

Appointment Scheduling, Cancellations, and Heckling

This one might be my LEAST favorite. Doctors and other medical professionals have a HUGE range in availability, responsiveness, attitudes towards collaboration and remote patient contact. I hate talking on the phone. I hate talking to people I don’t know in general. People find it hard to understand me and I have a hard time understanding them. It isn’t a great combo. But I do it because I have to. Generally, my team falls into two categories: can see you within the week or can see you in the next 3-9 months. While I totally get the deal with both types, it can be more than frustrating for something to come up in between your 3-9 month follow ups. I am currently playing phone tag and portal spamming with my GI teams because things need getting done but have been less than successful.

As mycharliequinn so aptly explains going to the doctor as a spoonie: “going to the doctor when you’re chronically ill is weird. It’s like imagine everything in your house is on fire, and you’re standing there and the fire department come[s] in like, describe the fire to me and maybe we can find out what caused it and put it out. And you can’t just say everything so you’re like… well the fire in the curtain is the biggest but the fire in the photo albums might be doing the most damage also the fire in the couch is really inconvenient. Occasionally the fire guy is like, well your tv is on fire so it might be electronic- fireitus but that would cause other things like fire in the DVD player. And you’re like, oh yes. That’s been on fire for years. I forgot to mention it because it’s always been a relatively small fire. It’s right next to the bookshelf which has much more fire. And then the fire guy is like, oh. I wouldn’t worry about that, book shelf fire just happens sometimes.”

 

Attending your “Weekly” Appointments

For me, I am currently on a “rather empty” schedule with weekly PT and Aqua PT sessions and biweekly infusions. Just getting those scheduled and being able to get to them and participate takes a lot of spoons and most of my schedule is based off these events.

Decide When to Brave Emergency Departments

Practically have an algorithm this one now but can be tricky, especially considering the “luck of the draw” on if your ED team has even heard of your conditions, actually pays attention to your chart, or can do anything to help. Chronic illnesses often leave you in this limbo where you’re not about to drop dead but not okay enough to stay home and NO WAY can get in to see your 3-9 month doc who manages that kind of stuff. It can be awkward for everyone.

Tips for an Inclusive Halloween

Halloween can be a real struggle for kids (and adults) with disabilities. Here are some examples of aspects of halloween that are not accessible:

1. Walking around in the dark
2. Being surrounded by people who look different than normal
3. Sensory considerations with costumes
4. Sensory considerations with house decorations (flashing lights, motion activated stuff, jump scares)
5. Lots of walking/ rolling and physical accessibility of getting to house’s doors
6. Talking to strangers (Trick or treat, asking for candy, responding to what your costume is)
7. Food allergies or inability to eat
8. Fine motor skills needed to grab candy

Here are a few adaptations/considerations that will help mitigate these challenges:

Food allergies/ inability to eat: Meet the Teal Pumpkin Project

The Teal Pumpkin Project is an initiative to include those with food allergies or special diets in trick-or-treating and to raise awareness. To participate paint a pumpkin teal (or print a picture and tape it to your door) and stick it on your porch. When you go out to buy candy, also buy some non-food items for kids. Examples: silly bands, party favors, bouncy balls, silly putty, vampire teeth or stickers! Party stores have lots of this stuff! Then, when trick or treaters come, simply hold two bowls and let the child choose! Believe it or not, there are even some kids who just don’t like candy (real bummer for Halloween).

Resources and further details found here! This year they have even added a map where you can tell the world your house is participating!

Trick or Treaters who don’t say Trick or Treat

There can be many reasons why someone might not verbal say trick or treat. They may be deaf, have anxiety related speech issues, be nonverbal, or just unaware that they are supposed to/why they are supposed to. Some may carry cards like this. Some may have a communication device. Some may just expect you give them candy. When in doubt, just give the kid some candy!

Decorating Your House

Keep in mind that for kids, terrifying is more likely to mean they will skip your house rather than bravely wandering forward. Be careful of extension cords as tripping hazards, poorly lit uneven surfaces, steps needed to climb to get candy ratio and other dangerous factors that might be hard to see at night, kids are unpredictable and hopped up on sugar. Also consider use of strobe lights, fog machines, and motion activated decorations as they may cause sensory overload, breathing issues, seizures etc. If you do want to use a strobe light, set it at a lower interval and it will be less likely to cause problems. Remember: its about the candy, costumes and fun…

Pro Tip: If you live in a house with more than 5 steps you might want to consider sitting down by the sidewalk during the main rush to hand out candy if you don’t want to get skipped!

Be patient and Enjoy!

Give that kid who appear to be indecisive a little extra time to look at his options, he might have allergies, motor planning issues, or just wants to get candy he actually likes instead of accidentally grabbing the stinkin pretzel bag. Don’t force children to speak to get candy. Give compliments on costumes even if you have no idea what they just said they were but also keep in mind that a kid not wearing a costume may have sensory issues, fabric allergies, or is scared of costumes. Also, if a teenager, adult, or other non-kid comes to you trick or treating don’t make them feel out of place, they’re participating and nothing wrong with being a kid at heart!

HAPPY HALLOWEEN!

Life Hacks: Spoonie College Edition

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      So I’m actually starting my 5th year of college going straight (fall, spring and summer except one summer). I have attended three different universities and started out only minimally effected by health problems (mostly GI, migraines) and wound up here, a professional patient needing complex care and supports. While each college had different systems, strengths and difficulties, I learned some valuable things about being successful in an environment that is largely unsuited for those with chronic illnesses. 

Here are some things I have learned along the way, in no particular order and not institution specific: 

1. 1. Disability services: The process towards getting accommodations is LONG, often repetitive, and stressful. Often, accommodations are generic,  inflexible, and “base packaged” (you probably will get about (max) half the things you need to keep up and be successful and the rest is up to you. Here are some tips to get the most out of the services offered there (and your time and energy):
      1. Start paperwork ASAP, pester those overworked doctors to get their part in before the semester starts as accommodations will never be retroactive. Also, make copies/ scans of every form or piece of documentation that leaves your hands. Things get lost all the time. 
      2. Know which battles to fight. Back to the max 50% of what you need thing, often times you will receive basic accommodation and get some pushback asking for more. Is that note taker necessary for you to succeed or can you work out a way to record lectures, ask a classmate to look at theirs, use assistive technology and save your fight for extended time on tests where you might fail without it.
      3. Send a personal note/make a personal introduction along with your formal accommodations sheet. In my experience, this has helped teachers relate to me, understand how my disabilities effect me and my learning/schooling, and also makes it seem a lot less like taking passes on things and more like “I expect this to happen, I don’t know when or where or how, but here’s a proactive heads up”. It isn’t necessary to name or intricately discuss your diagnoses to be effective.
      4. You’ll have to do a lot of accommodating for yourself/ working 1:1 with teachers. 
      5. In most universities, students with disabilities have priority class registration. SUPER HELPFUL!!!
   2. Housing: While living on campus may at first seem unappealing (again, varies in atmosphere by university), there can be a lot of benefits especially if you can’t drive. 
      1. They are required to have ADA accessible rooms. My room has widened doors, a lower peephole, lower closet bars, grab bars in the bathroom and shower, a fold down shower bench, and lowered light switches. 
      2. Accommodations for single rooms can be made for those with compromised immune systems, PCAs, MCAD, severe GI issues, and other medical reasons. 
      3. You can have a quiet place to rest in between classes, are close to dining (if you eat), and have access to evening events such as clubs, performances, and hanging out with friends without being too far from home or living in the Student Union Building. 
      4. DOWNSIDE #1: If you have problems that can be exacerbated by fire alarms… apparently no one knows how to cook MFing popcorn.
      5. DOWNSIDE #2: Germs spread fast and easy, may not be the safest place if you have a weak immune system without taking precautions.
   3. Class Schedule Advice

1. 1. 1. What you want isn’t always what is best. Sure, like nobody wants 9 AMs every day… or any day… but for me, the later in the day the more medication wears off, pain increases, spasticity increases, and overall deterioration occurs. Class is already hard enough to sit through, concentrate, learn and remember… don’t make it harder on yourself for a potential 2-3 more hours of sleep. Or flip all that if that’s how your body works.
      2. Register ASAP. Classes fill up, plans change.
      3. Schedule max number possible classes, attend all the first week and then drop as needed. That way you secure your seat, get to meet the professor, see the syllabus, see if there are major barriers in the class (i.e.  Service dog you’re allergic to in a small classroom)
   2. Medical care/ health safety

1. 1. If you live on campus, tape a folder somewhere visible (wall, by light, dresser) and write EMERGENCY INFO on it super big and put in your medical emergency info, copy of your license/state ID card, insurance card (if you have it), and your school ID/student ID #
   2. Start a file with on campus health. Even if they never care for you it is helpful for them to have your base information in case you need them in an urgent matter, have doctors far away, or just need something simple like a wound cleaned. Most student health offices will be able to do allergy shots, some will even help manage infusions. 
   3. Introduce yourself to the campus chief of police, especially if you have the potential for reoccurring EMS issues like seizures, anaphylaxis, diabetes etc. They are usually first on the scene and can inform EMS.
   4. Wear a medical ID bracelet. Bonus if it has a way to see all your info. See my post on my system here.
   5. If you have asthma, MCAD, or immune problems I highly suggest purchasing a high quality, relatively comfortable mask to wear outside around campus. I pass smokers, high perfumers, and other triggers CONSTANTLY on campus. I use these and love them (recommend the ones with 2 filters for comfort and breathability).
      
2. Miscellaneous 
   1. Join one club. Even if you only go twice a year, you may meet some people and you feel somewhat a part of things.
   2. If you live on campus, get to know some people on your floor. They may be good for procrastination buddies, errand helpers, cards against humanity mates, or near family friends. 
   3. Don’t bring everything you own to move-in. Stuff accumulates anyways and it is a pain.

Hope this helps. It can be overwhelming but it IS manageable with the right supports. 

 

 

 

Spelunking 101

Okay, honestly this has very little to do with spelunking/caving but I jumped at the chance to use the word spelunking. Spelunk. lol. No, this post is about self-discovery and acceptance so if you don’t enjoy sap stop reading here. As many of you know, I love quotes. I find other’s words, art, and music to be so much more fitting than my own at many times in life and I hoard them in picture folders, notes on my iPad, and sometimes on my wall. They bring me comfort, guidance, and hope. This post is inspired by the amazing words of Brene Brown.

“Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy- the experiences that make use the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.” -Brene Brown

*******CW:mental health, nonspecific PTSD************

Bam. I can safely say that most of my life I have felt like an outsider both among peers and in my own skin. I felt like a spectator and bounced around from one click to another. Sure, I was invited to birthday parties, sleepovers, and physically included most of the time but I struggled to hold on to friends, relate, and feel comfortable around others. I have always found it easier to relate to older kids and adults. But that isn’t what I wanted to talk about, I wanted to talk about the internal struggle, the fitting in your mind and being comfortable with your thoughts, feelings, memories, and anxieties.

I mostly write about my physical illnesses and superficial life but I think I’ve finally gotten to a point where I am comfortable with my mind and understand it enough to express in the hopes that it might help someone on a similar journey. Side note, many of us with invisible illnesses are often misdiagnosed with various mental illnesses and some symptoms can mimic conditions like anxiety, conversion disorder etc BUT many of the conditions I have also have comorbid mental illnesses. With EDS, bipolar, depression, anxiety, and eating disorders are common. It has taken me many years to figure out what symptoms/problems are of physical illnesses and which are mental and I still have a bunch of question marks. Mental illness is equally as important and dances along with chronic (physical) illness. PLEASE don’t make the mistake I made of many years of trying to separate them and treat exclusively. I personally have anxiety, PTSD, depression and compulsive behaviors. Depression and anxiety run in circles around both sides of my family and are no stranger yet it took me a very long time to get to know my anxiety, how it manifests, what my triggers are, what works for me and what doesn’t work for me. I have been on medication, acupuncture, meditation, yoga, exercise, diet changes, therapy, inpatient therapy, and much more.

My anxiety doesn’t present in the stereotypical panic attacks, it doesn’t disable me but it does significantly impact my mood, behavior, thoughts, plans, interactions, and stress levels. I have lots of different areas my anxiety clusters into, including but not limited to, social, medical, school, overstimulation, relationships, changes in plans, and unknown situations. I find comfort in sensory input (pressure, soft, certain noises, hugs, soft lighting), guided meditation, talking, listening to music, being in a comfortable space, and quiet. While I can no longer take medication because of my Long QT (blasted booger), medication did help lower my baseline anxiety. My PTSD is also closely tied to anxiety, especially when it comes to hypervigilence. Every time I am in public I have to locate exits, look for suspicious people, notice any police prescence, look for signs of deception… I would make a great cop… minus the seizing with loud noises and flashing lights haha. While I now function fairly well on the average day, the past couple years have taken hard work, introspection, listening, and a lot of trial an error to get to where I am today and I want to toot my own horn for once. I didn’t exactly have a choice to begin this spelunking through my dark, it was honestly a matter of survival but looking back now I am so thankful I did. I am not cured. I am not patched back up. I still have plenty of days where I think the world would be better off without me or that all my friends actually hate me but I am able to recognize the forces behind that and accept that this isn’t a me vs my mental illnesses battle. It’s not a battle. It’s just me. It took me 22 years but I have finally figured out that I can accept who I am now, my mind, my past, my body, my limitations, and still want to progress forward and make positive change. Apparently, the two aren’t mutually exclusive.

To everyone who made it to this point and is struggling I hear you. I don’t care if we have only spoken once, never at all, or you are one of my closest friends, if you want to talk, need someone to lean on, have questions, I promise to do my best to be there for you. I challenge you to at least peek at that cave. I challenge you to give yourself the slack you give your friends. I challenge you to get to know all aspects of your body.

That’s all for now, enjoy your blasted fireworks.

All about my wheels (Nemo)

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So apparently March 1st is International Wheelchair Day, so I’m going to do another post about my wheelchair, wheelchair life, and probably some other stuff, so buckle up (get it…wheelchair seat belts)! Despite wheelchairs being a fairly common thing, I have found that most people outside the disAbility community have very little experience with wheelchairs other than maybe being pushed in the awful clunky hospital wheelchairs that time you were super drunk and broke your foot. What that translates to is a) a lot of interesting/awkward questions I get asked from all kinds of people when I am out in my chair. I, personally, don’t really mind them as I am an open person, but I feel like there are still lots of people who always wonder but never ask. Wheelchairs are amazing pieces of technology that are not “confining” nor “bounding”. They allow independence, freedom, and no one stays in their wheelchair 24/7. 

 

My Wheelchair FAQs and Comments:

Excuse the poor picture

• • What kind of chair do I have? 
    • I have a rigid frame Quickie GT Ultra-lightweight manual wheelchair with a Smart drive MX2 power assist wheel. I have a Comfort Company Acta-Embrace back (removable and foldable), and a Comfort Company Vicare VersaX cushion with a custom cover. I have quick release semi-pneumatic wheels/tires.
    • Most manual wheelchair users get their chairs from either Quickie, TiLite (does titanium chairs), or Colors. Almost all ultra-lightweight manual chairs are custom made to the user’s body, preferences, and medical needs (pressure reducing cushions, seat belts, etc). Most ultra-lightweight chairs are under 25 lbs and the lightest is around 9 (frame only). As a manual chair user, every bit counts in effort of pushing, loading and unloading, and portability.
  • Are there differences in wheelchairs?

Different back but whole chair

• • • HUGE differences. First off, I will only be talking about ultra-lightweight manual wheelchairs, which is what most full-time chair users pick between that and electric. For manual chairs, one of the first decisions you have to make is whether you want a rigid or foldable frame. Rigid is durable and smoother ride, but foldable can be easier to get in and out of cars. Users also get measured for cushion dimensions, footplate position, backrest height and depth, backrest angle, “dump” angle (how far down your bum sits), center of gravity (positioning of axel in relation to wheels, important for wheelies), floor to seat height, size of wheels and much more! There are also lots that you get to pick based on personal preference like color of the frame, spoke colors, type of caster (small front wheels), size of caster, wheel type (sport, normal), hand rim type, and more!
  • Can you move your legs?
    • Yes, I personally have full use and sensation of my legs. I can’t remember the exact numbers but a good majority of wheelchair users have some use or sensation of their legs. There are many reasons people use wheelchairs, so if you see a wheelchair user’s feet move or see them walking, don’t assume they are faking it…odds are they aren’t.
  • Why do you use a wheelchair?

• • Several reasons, technically, I am what docs and PTs call a “non-functional ambulator”. All that means is that for me, walking is inefficient, painful, tiring, and often dangerous. Some of the reasons I use my wheelchair are: dislocations and subluxations of hips, knees, ankles, spine due to EDS, chronic fatigue, dizziness, poor coordination, lack of proprioception (being able to tell where your limbs are in space), weak veins and heart/ blood pooling issues, inability to walk long distances, and muscle spasms (to name just a few!).

• • When was your accident?
    • Yeah… I get this a lot. Not everyone who uses a wheelchair has a spinal cord injury and not all of us were in accidents, there are several conditions or reasons a person might use a wheelchair, some congenital and some not.
    • Some common examples (*indicate congenital conditions or potential to be)
      • Spinal cord injury
      • *Spina bifida
      • *Cerebral palsy
      • *Ehlers-Danlos Syndrome
      • Stroke
      • Multiple Sclerosis
      • Chronic Fatigue Syndrome
      • *Epilepsy
      • Amotrophic Lateral Sclerosis (ALS)
      • *Osteogenisis Imperfecta
      • Traumatic Brain Injury
      • Amputation
      • *Spinal Muscular Atrophy and Muscular Dystrophy
      • Dysautonomia
      • Much more! We are as diverse as the rest of the population and no two users are the same!
  • *screaming* HOW ARE YOU TODAY MAAM? 
    • Wheelchair≠ hard of hearing ≠ intellectual disability (even if it did, not the way to go)
  • At least your feet don’t hurt, I’m so tired of standing.
    • I get this one A LOT, especially at events. Yeah, my feet may not be sore but make no mistake, wheeling around is brutal on your shoulders, arms, fingers, and neck. Especially as an EDSer. Thankfully, my Smart drive (link to video demo) allows me to save spoons by automatically matching my current push speed until I tap my bracelet controller or grab my hand rims to break.
  • What is the worst thing about being a wheelchair user?

“Build a ramp they said. Its the law they said.”

• • • Tie between grocery shopping, ice, or “accessible” buildings.
    • Grocery shopping is a pain because you cant reach 1-2 of the top shelves from a seated level, you need mad skills to push a cart and wheel (alternating hands and pushing) otherwise have to balance a basket, once you get home you still have to get them inside…
    • Ice sucks on wheels
    • Like of all the architectural feats and amazing designs and still like 80% of buildings have steps to get into them. Smh world.
  • How do you drive? (answered for people who don’t have leg function)
    • Manual hand controls or electric ones

Example of manual controls

• • • Manual ones consist of two poles with clamps that go around the gas and brake and you push the gas one for… gas and the brake one for the brake. These can be easily removed and don’t permanently alter the car. This leaves one hand for steering. Many people have some variation on the “suicide knob” which attaches the wheel and makes it easier to turn with one hand
    • Electric controls have to be retrofitted with controls that work for the driver but most have a control setup for brake and gas and then the steering wheel
• Here let me give you a push? or *grabs your push handles and starts pushing you without asking*
  • NOOOOO! Thank you for caring and being nice, asking is always fine. First off, it takes some skill to properly push a wheelchair on normal terrain, certain sized cracks might send you flying, ramps are hard to control speed on, and people have to be tactfully avoided. Second, NEVER touch, push, or grab a person’s wheelchair without their permission. It is terrifying, rude, and dangerous. I have had it happen many times and end up with dislocated fingers, some bruises, and occasionally damage to my chair.
• Do you need help? “No, thanks” No really, let me help.
  • Similar to above, but believe it or not, we get along in the world fairly independently most days. Again, always okay to ask but NEVER ASSUME.

I love my wheelchair. It is my freedom, my independence, and my ticket to less pain. It is a piece of equipment, but also an extension of me. Treat it like you would treat me. Happy early international wheelchair day, I hope it is wheelie great! *badumchhh*

when a tree is more important than access

If You Can’t See the Good, Make the Good

             Okay guys, this is not a political blog so this will not be about politics, but I am acknowledging the many whose lives have been torn apart recently due to aforementioned politics. I feel you, don’t give up. These past couple months have been very challenging for me and friends due to health, losses, and overall “bad stuff”. Despite it all, we find ways to carry on. We find new ways of being okay, we accept the pain and the hurt and we find new reasons to live. Sometimes it just has to be enough that in this very moment you agree to hold on through the next. It is okay to not be okay. Sometimes it is enough to hold on to the belief that life in and of itself is valuable, even when you can’t formulate a reason for things. And if your me, sometimes you hold on to a lesson in a book or movie, holding on to the belief it is true.

         The title of this blog comes from an amazing young boy who, unfortunately, lost his 10 year battle with a rare disease. Anyone who knew him knew that despite 80+ surgeries, near constant hospitalizations, daily pain, and 2 failed marrow transplants, he loved his life. He dedicated his life to others and never complained. One of his catchphrases was, “if you can’t see the good, make the good”. I am so very thankful to have had the pleasure of knowing him, even if it was ever so brief. Irrational as it is, one of the hardest things about losing him was dealing with the feelings of why him and not me. I feel like he had so much more to offer the world, though I know he is home now. I will do my best to spread love and light the way you taught me, you are missed. Thank you to all my friends and family who have supported me through this time.

“‘Yes, thats’ so,’ said Sam. ‘And we shouldn’t be here at all, if we’d known more about it before we started. But I supposed it’s often that way. The brave things in the old tales and songs, Mr. Frodo: adventures, as I used to call them. I used to think that they were things the wonderful folk of the stories wen and looked for, because they wanted them, because they were exciting and life was a bit dull, a kind of sport, as you might say. But that’s not the way of it with the tales that really mattered, or the ones that stay in mind. Folk seem to have been just landed in them, usually — their paths were laid that way, as you put it. But I expect they had lots of chances, like us, of turning back, only they didn’t. And if they had, we shouldn’t know, because they’d have been forgotten. We hear about those as just went on — and not all to a good end, mind you; at least not to what folk inside a story and not outside it call a good end. You know, coming home, and finding things all right, though not quite the same — like old Mr. Bilbo. But those aren’t always the best tales to hear, though they may be the best tales to get landed in! I wonder what sort of a tale we’ve fallen into?'”

-J.R.R. Tolkien

 And that, my friends, is why Samwise Gamgee will always be the best. That and…

And that’s all I have to say about that…

Top 5 Things I’ve learned through the hard way and internet quotes

1) “Nothing in this world worth having comes easy.” – Dr. Bob Kelso

      In one of my all time favorite scrubs quotes, Bob Kelso dishes out some serious sass as well as important advice. This has made its way up the list of favorites, especially in the past couple years. Life is precious, but hard. That being said, don’t confuse between struggling and a bad life. When I graduated high school, I believed I would go to the college I was accepted to for four years, get my nursing degree, work some long hospital shifts, fall in love, settle down and keep living…just like everyone else. After all, I had gone from elementary school, to middle school, to high school… college was obviously the next step. A year later I went to move into my dorm sophomore year with the friends I made and the dorm I wanted, and a shiny 4.0 GPA (still baffles me) when I got a call from my doctor who strongly recommended I come back home for treatment. Sad, angry, disappointed and confused we packed my stuff back up and moved out (RA was so confused). I finished my vacation with my family then drove back up home with my mom. As we pulled into the driveway I remember wanting to put on my invisibility cloak and run into the house, hiding for the possibility of seeing a confused neighbors look or prodding questions. The next couple weeks I threw a major pity party and honestly felt ashamed and like a failure. All my friends were surely having a great time off at college, living it up carefree. This linear path I had drawn out perfectly straight and parallel had been erased. It took me a year of treatment, online class at community college, and bitterly scrolling through my newsfeed before I drew up a new path: a new school, new friends, and a new major. Then something really cool happened. I started to open up about my struggles, my frustration, and my change in direction, and so did other people around me. Turns out my friend had transferred colleges too and another one decided last minute to work instead. So guys, don’t worry… life isn’t linear and it sure as hell ain’t simple.

2) “Sometimes you never know the value of a moment until it becomes a memory.” – Dr. Seuss

        I think all of us at some point in our lives have learned this one the hard way. That time with your grandma you spent with your mind elsewhere and it turned out to be your last. That joy of holiday traditions you no longer do because xyz. That time you ended a relationship over something stupid. Realizing that some of the moments you can cherish forever are smiles on faces or making up crazy animal combos with a friend (schwogfry for life). We are not guaranteed this day, nor this hour. Remind yourself of the beauty and love that surrounds you each and every day.

3) “Be at peace, not in pieces.” 

      Despite being an awesome pun, this is one of my go to catchphrases in times of trouble. I like control… most of us do, and whenever I feel I’m losing control this is a solid go to. I come from a long line of very anxious people and believe me when I tell you, it takes its toll. Just remember it’s okay to accept your not in control or need help.

4) “Health is a crown that the healthy wear, but only the sick can see.” -Imam Shafi’i

     Yes.

5) “Be kind, everyone you know is fighting their own battles.” 

     Similar to #1 and I posted about this before but I needed reminders to myself all the time. People are different and that’s okay. We grow and expand as humans by beings around people who are different than us. You don’t have to agree or concede or even argue. 

Well, my fingers already hate me, I promised my brother I would get back to blogging (taadah!) so I’ll be trying to post some more stuff more frequently including a health update because I know a lot of y’all have asked. 

Happy holidays!

An Open Letter to my Caregivers and Friends

Dear lovely humans,
    There are a couple things I want to tell you, remind you, or just share with you. First off, thanks. I know I’m not always easy to be around, or to care for, or to love. Now you may try to make the point that no one is an you would probably be right. It is hard for me to accept help and cope with not being able to do the things I used to or should be able to do at my fruitful age of 20. Its hard to watch my peers doing things that seem so out of reach. Its hard to live in a society that values productivity when your accomplishment of the day is getting out of bed.
     So thank you. Thank you for coming up with ways to make me feel useful even when I can’t get out of bed. Thank you staying home with me and watching a movie even though it seems like thats all we every do. Thank you for spending hours researching my conditions just so you can understand my world. Thank you for respecting when I want to be alone. Or when I cancel plans for the 1,000th time. Or when I go into a communication dead-zone. Thank you for sitting with me in the middle of a public place when I get a dizzy spell so I don’t look stupid. Thank you for standing up, and speaking up for me when I couldn’t. Thank you for spending countless hours in doctors offices, ERs, and hospitals. Thank you for being patient.
      Apologies are also called for. I’m sorry for lashing out when I’ve had a bad day. I’m sorry for being unpredictable. I’m sorry for the days when the illness takes over. I’m sorry I can’t be your partner in crime for hikes or horror movies anymore. I’m sorry for the middle of the night panics, the scary calls from EMS saying they’re taking me to the hospital but can’t tell you why. I’m sorry for causing you pain when bad things happen. I’m sorry sometimes I live in my own world.
      Thank you for helping me get through the deep valleys of depression and isolation. Thank you for being there to help me celebrate my accomplishments and joys. I am constantly amazed by the unconditional love and support you guys show me (except you mom, that’s in your job description).
                                
Thanks,
Julie