Tuesday, August 15, 2017

Sick of Silent Suffering

        Over the past couple years I have become increasingly open about talking,  writing,  blogging,  and advocating about things that are important to me,  including my chronic illnesses but I definitely wasn’t always this way and my family,  for all their wonderful other qualities,  is more the suffer in silence type.  That is how I grew up and it wasn’t until recently I realized the toll it has taken on me.  *Side note:  I do believe that this system works for some people and keep them happier,  I’m not judging.* Back to glorious me. The problem with suffer in silence is that,  intentionally or subconsciously,  it creates a wall between you and “everyone else”.  After all,  how could you possibly know that another person was facing similar challenges as you if they are also silent?  One of my most valued friendships is with someone that I despised in high school because she was getting help for what turned out to be the same condition I had (she hated me back because I flew under the radar). We reconnected after my diagnosis and confessed our mutual hatred for each other and turns out we are very similar people with similar struggles and challenges and we keep each other sane (lol, if you can call it that L.B.N). Yes,  that is a extreme example but hang in there.  

       We are social creatures.  We strive to make connections with others,  find the people who make us laugh and support us,  and teach us about the world. We long to fit in,  to be noticed, or even to be famous.  But who here can say that they have felt it is easier or better or more desired to suffer in silence no matter how big or small the challenge is? I struggled through my education beating myself up along the way for not being able to figure out long division,  for NEVER being able to spell things right,  for trying to fit in harder than I tried to learn. Growing up in an area that prides academic achievement as a critical pillar of your existence,  I felt like a failure even though I “made good grades and had good friends”.  It wasn’t just academically either,  family stress... silence,  friend drama... silence,  depression... silence, and pain... silence.  Then I graduated and moved to Birmingham,  AL.  Which made it so.  much.  worse.  There saving face is critical to social acceptance.  It was suffocating for me and I’m fairly certain contributed to my physical and mental health getting so much worse.  There is a great Miranda Lambert song (oh no Julie... not country.  Yes.  Country.) called “Mama’s Broken Heart” about a breakup and saving face. It “don’t matter how you feel,  it only matters how you look... my mama came from a softer generation where you get a grip and bite your lip just to save a little face”. 

       So I left and moved back here and that is when I decided to stop hiding and start being open about all kinds of things and I have been amazed at where it has lead me.  I have accepted the vulnerability that comes with exposing hurt,  weakness,  and challenges and through it have gained truly amazing friends,  education, healing and perspective.  I no longer feel totally alone in this world which I am remind of even in my worst days by the true connections I have made with others.  I am learning to express myself,  care for myself,  and help others.  I truly believe that vulnerability leads to connection and connection leads to understanding and understanding leads to compassion and compassion... well compassion is pretty powerful stuff.  


“The irony that we attempt to disown our difficult stories to appear more whole or more acceptable but our wholeness - even our wholeheartedness- actually depends on the integration of all our experiences including the falls. “ -Brene Brown

Wednesday, August 9, 2017

Life Hacks: Spoonie College Edition


      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. 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. "she is clothed with leggings and oversized t-shirts and she naps without fear of the future" Probably College 31:25
    2. 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.
    3. Register ASAP. Classes fill up, plans change.
    4. 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)
  4. Medical care/ health safety
    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).
  5. 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.