During the Spring 2022 semester and after the home going of my mother on 2/28, I kept telling myself to “hold on” until this summer for some mental health R&R. My department coordinator and chair were both very supportive of my taking the summer off from teaching. This is a break I have not taken advantage of for the past 12 years. My plan was to see my counselor. Write. Be active in some virtual online support groups that included Zoom weekly sessions for those specifically grieving the loss of a parent.
My counselor did not have any openings. A colleague would only see me face-to-face or Zoom. I tried one session in her 4 foot x 4 foot office and realized having a cane and a large service dog, this option would not work. The office also smelled of mice (recently re-opened) after COVID lockdowns. Finn was super distracted (with reason). I opted for Zoom. She said she couldn’t use captions because the organization’s account didn’t support them. I sent her website after website of how easy it is to click the button to make all Zoom accounts “live transcript accessible”. She continued to insist. I’m back to looking for help now. I’ve received 2 emails back from some places that asked me to call for an appointment. I explain why that is difficult, they tell me they don’t make appointments via email or text. ??????????????
This morning I received an email from the 4th online support group that I have tried to join. All say they cannot use captions on their Zoom accounts (yes, even after my kind instructions of how to do so) with the exception of one. This group leader and LPC said she could not use captions because many in the group had heavy accents and the captions would not be able to caption their words correctly and this would cause them discomfort.
An online forum I have joined (the leading grief online forum in the world) told me that I needed to get an interpreter from my state. I explained again that Zoom has captions that are easily enabled by the account host. That was 3 weeks ago and they have not responded to my 4 emails since.
It seems grief is not accessible for many in the disability community. I plan to start an online support group in the future that IS accessible to all. However, I cannot do so now. I AM GRIEVING. I am the one who needs help right now. I can’t help others if I’m struggling to help myself.
So… I’m reading. A LOT. Some of the titles include:
“Devotions: The Selected Poems of Mary Oliver”
“Disappointment With God” by Yancey.
“Always to Soon” by Gilbert.
“Healing the Adult Child’s Grieving Heart” by Wolfelt.
“Rip Van Winkle” is set in the years before and after the American Revolutionary War in a village at the foot of New York’s Catskill Mountains where Rip Van Winkle, a Dutch-American villager, lives. One autumn day, Van Winkle wanders into the mountains with his dog Wolf to escape his wife’s nagging. He hears his name called out and sees a man wearing antiquated Dutch clothing; he is carrying a keg up the mountain and requires help. Together, the man and Wolf proceed to a hollow in which Rip discovers the source of thunderous noises: a group of ornately dressed and bearded men who are playing nine-pins.
Van Winkle does not ask who they are or how they know his name. Instead, he begins to drink some of their liquor and soon falls asleep. When he awakens on the mountain, he discovers shocking changes: his musket is rotting and rusty, his beard is a foot long, and his dog is nowhere to be found. He returns to his village, where he recognizes no one. He arrives just after an election, and people ask how he voted. Never having cast a ballot in his life, he proclaims himself a faithful subject of King George III, unaware that the American Revolution has taken place, and nearly gets himself into trouble with the townspeople until one elderly woman recognizes him as the long-lost Rip Van Winkle.
King George’s portrait on the inn’s sign has been replaced with one of George Washington. Van Winkle learns that most of his friends were killed fighting in the American Revolution. He is also disturbed to find another man called Rip Van Winkle; it is his son, now grown up. Van Winkle also discovers that his wife died some time ago, but he is not saddened by the news. He learns that the men whom he met in the mountains are rumored to be ghosts of the crew of the Halve Maen, captained by English sea explorer Henry Hudson. He also realizes that he has been away from the village for at least 20 years. His grown daughter takes him in and he resumes his usual idleness. His strange tale is solemnly taken to heart by the Dutch settlers, particularly by the children who say that, whenever thunder is heard, the men in the mountains must be playing nine-pins.
(“Rip Van Winkle”, 2022)
While researching for this post, I realized for the first time in my 50+ years that I did not know the full story of ol’ Rip! I knew he was a man who fell asleep up in the mountains and didn’t wake up for years and years, but evidently the specifics were never imprinted in my memory banks. I was investigating Mr. Winkle because I have been having significant sleep disturbances and insomnia. I am going to make a point with this fairytale, but after reading the FULL STORY I have to put out there some recommendations:
Don’t Google “Where are the Catskills Mountains”, if you think they were named that because of killer cats.
Don’t escape to avoid naggers. Sit down and talk it out. Hold hands.
Don’t assist strangers if their need is to help carry a keg.
Beware of bowling outside. There are air conditioned Brunswick lanes everywhere.
Don’t drink Dutch liquor.
SET YOUR ALARM
So Rip got a whopping 20 years of sleep in and still managed to wake up stressed, confused, and out of it!
My mother passed away on February 28th from ALS. It is a horrible disease and it was not a “good death”. I miss her. All of the normal kinds of grief have impacted my ability to get a good night’s rest, but unfortunately her end was traumatic enough that I am plagued with nightmares. I’m sure MANY people feel this way about a loved one who passes. However, I have been SO MAD at God that my precious Mother, who impacted so many people beyond the impact on her children, would die of such a horrible disease. Don’t worry. I’m seeing a counselor and am part of a grief support group. Even psychologists need mental health help sometimes.
I’m blogging today to remind all of you, including my readers with visible or invisible illness or disability, that sleep is important. Everyone knows this and yet so many of us are sleep deprived, sometimes chronically so. The Centers for Disease Control and Prevention (CDCP) report that adults need at least 7 hours of sleep in a 24 hour period for best physical, emotional, and mental health (CDCP, n.d.). “Short sleep duration is defined as less than 7 hours of sleep per 24-hour period” (CDCP, n.d., para. 1). Short sleep duration means sleep deprivation. You should check out the link below in the references! There are numerous maps that show where Americans live impact those who may be sleep deprived. I found it quite interesting!
I am a late-deafened adult and am bimodal, hearing with a cochlear implant (left) and high-powered hearing aid (right). I also have Ménière’s disease, a vestibular and balance disorder. These disabilities are readily transparent in posts at Hearing Elmo. What many may not know is that I also am a TBI survivor (traumatic brain injury) and have Post-concussive syndrome. Essentially, I have problems with short-term memory. I have learned numerous ways to cope with this – perhaps I will expound on it in a future post! I share this, however, because people with disabilities generally require more sleep than other adults, and
I AIN’T GETTIN’ IT.
According to the Rehabilitation and Training Center in Washington, “40% of people with disabilities report long-term difficulties with sleep” (Jensen & Terrill, 2012, para. 4). This in turn exacerbates and worsens disability by worsening depression and anxiety, pain, fatigue, and irritability (Jensen & Terrill, 2012). For someone like myself with comorbid diagnoses of Major Depressive Disorder (Dysthymia) and Panic Disorder, this means a dramatic impact on the mental health disorders I “own”. It also impacts my physical health. My blood pressure is higher, my cognitive skills are impacted, and I am falling more. The latter is not something I, nor my neurologist, want in a patient with chronic concussions! Hayes (2018) explains it well when she explains that when you sleep a person’s body and mind go to work on healing and balancing. I am not healing or balancing. (Slight pun there as I have a balance disorder). A person with disability likely needs between 9-11 hours of sleep in a 24 hour period. I would provide the references for you on that, but frankly there are so many it would create a jumble of boring references instead of “blog information” for you. If you do not believe me, research scholarly sources for disability and recommended hours of sleep.
What’s a Person with Disability to Do?
(See what NOT TO DO in the list above about our friend Rip Van Winkle. Especially avoid Dutch liquor).
So what is a person with disability to do if they are not getting the recommended hours of sleep? I am dealing with the effects of grief and depression on top of my regular challenges. Knowing I need 9-11 hours of sleep does not mean that I will get that amount simply because I know the research about the amount needed. It’s pretty simple really.
MAKE SLEEP A PRIORITY.
I know! I KNOW! You are shaking your head “un-unh” and “NOPE” , telling me there is no way you can get that amount of sleep. You work. You have relationship obligations. You have a life to live! I can tell you that you are NOT going to live it if you do not make sleep a priority. At Hearing Elmo, you will find more than one post about the importance of sleep to someone living with disability. I know from experience that I can get around 7 hours of sleep a night, but I never get that all in one block. The grief and nightmares for one thing are impacting my ability to get a large “block” of sleep. Now I am waking up at least once with a new puppy and her potty break, and insomnia-related issues. I am getting 3-5 hours of sleep each night… just not all at once! This means:
Denise needs naps.
When I state this I mean with all seriousness that I MUST take naps. Yesterday, I had six hours of IPD (Internal Professional Development) workshops that meant I did not get my naps in during the day. Since this meant I was “wingin’ it” on 3-5 hours from the night before, I fell 9 times all after 12 noon. Two of those falls including a knock to the head, but thankfully after years of vestibular rehab and learning to “fall safely”, I managed to avoid a concussion — THIS time.
I know as a person with disability I need more than 7 hours of sleep to thrive (check).
I know as a person with disability I need to make sleep a priority (check).
Ok. So where do we go from here? (I’m glad you asked! <big grin>).
Things I have found that work:
Eat healthy and practice fasting before bed.
2. Religiously follow a bedtime routine. this includes:
A) No television or “bright screen” viewing at least 2 hours before bedtime,
B) Practice mindfulness. For me this means deliberately thinking about and dwelling on positive things such as favorite authors and/or poetry, stretching, taking my hearing assistive devices off early to eliminate extraneous noise, checking off things I am worried about or concerned about and with FOCUS shutting that “worry journal” and reminding myself to revisit if needed TOMORROW, pamper myself with a foot massage or manicure, do laundry (I know this one is weird but Finn, my service dog, helps me and I find it incredibly relaxing!),
3. Lock up the house (my OCD demands it).
4. Settle and prep my “nest”. (I cannot lay flat because of my vestibular disorder, so I have a variety of pillows and supports that I use to sleep upright). I make sure that my Finn, my service dog’s alarm clock is set and double-check it is correct.
5. Eliminate pain. I suffered a severe sprain and torn ligaments in my right ankle after concussion #6 in 2012. Even after hours of rehab and special braces as needed, I always go to bed hurting after a day of walking on this ankle. A cane and service dog can only eliminate some of the stress on this important appendage! For me, taking two Tylenol PM at bedtime is enough.
6. Avoid caffeine after 12 noon. Some folks may be able to caffeinate later in the day with no impact on their sleep. I am not one of those people.
7. Sleep in a cool and dark room. Experts add “quiet”, but hey! I’m deaf! I do sleep with black-out curtains, fans, and a lowered thermostat at night.
8. Go to bed and wake up at the same time 7-days a week. Yes! Even on the weekend!
9. Avoid alcohol before bedtime. This is easy for me since I cannot drink alcohol because of my balance disorder.
10. Exercise 20-30 minutes a day, but at least 3 hours before bedtime. I have found some terrific options for standing exercises with minimal changes in “head altitude” (which causes vertigo). This has many benefits beyond sleep hygiene, but I have learned I have to do this by early afternoon.
11. When I take my “make-up naps”, avoid doing so after 3 PM.
12. Use my weighted blanket. This helps my anxiety disorder as well as supports my efforts of avoiding insomnia. Finn (my service dog) has also been trained in DPT (deep pressure therapy), but he isn’t as heavy as my weighted blanket. I have found that something that doesn’t breathe, wiggle, or expel doggie breath in my face works better. He gladly assists during waking hours though.
13. See the doctor when needed. Because I am a concussion patient and TBI survivor, I check in with my neurologist at least twice a year. These visits always include a review of my sleep schedule.
14. Take advantage of natural light during the day. Natural light assists with circadian rhythms. My office and much of my home has big windows that I take advantage of whenever possible.
15. Avoid clock watching. My Apple watch tracks how much sleep I get each day, including REM sleep. I consciously avoid looking at it though! I have learned that if I have a clock I can see from my sleeping position, I pop awake all night to note the time. (Maybe I’m afraid of some Rip Van Winkle magic?). My alarm clock is where Finn can hear it. I have conditioned myself NOT to check my watch or any other form of time keeping.
16. Wisely manage my prescriptions. Some of my medications to treat my disabilities and mental health diagnoses, can impact falling asleep easily. With input from my doctors, I carefully manage WHEN I take my ‘scripts each day.
So… BACK to Mr. Winkle! There are times I wish for a 20 year nap. I think about how rested I would be and so full of energy! Obviously, this isn’t something any person can do so the next best step is prioritizing steps 1-16 above. What are some other ways you have found that assist in good sleep hygiene as a person with disability? Please feel free to share in the comments.
A common theme of many posts on “Hearing Elmo” is that one of the hardest things about being a person with disAbility is that we experience all the normal challenges, trials, and heartaches that everyone else does. It means that like all people, we will experience things like broken relationships, health crises (related or unrelated to our disability), unemployment, grief, unfair criticism, financial challenges, repercussions of poor choices, stress, mental health challenges, flat tires, cavities, unexpected zits, stepping on a hair ball on our way to the bathroom late at night, lost contacts, doctors with poor people skills, and days we won’t solve the Wordle.
Life is hard and not just for those who live with disAbility.
Life is also very, very good.
As a psychologist, I am often shocked by how I do things that are unhealthy when I TOTALLY know better. Things like…
Staying super busy so I cannot get bogged down in the FEELINGS.
Refusing to cry because I know I may not be able to stop.
Working really hard at never being alone with my thoughts.
Behaving as if I am strong and have it all together.
All this pretense is exhausting y’all. I am so So SO SOOOO tired.
I’m a co-advisor for a campus student club/chapter of Active Minds. One of the things we talk about in our meetings at LEAST once a semester is that using the right word doesmatter. Check out this great (short) video that emphasizes some of the things we share with our students: MUST SEE VIDEO
Two words I habitually say are “CRAZY” and “INSANE”. Truthfully, I had achieved a point where most of my verbal language (well… and SIGN for that matter) had eliminated these two words. I don’t know if it was the break between semesters or what – as I’m certainly not making excuses. To my dismay (with a little bit of HORROR thrown in) I discovered that these words were back — being used again as a common descriptor in my everyday language.
As a matter of fact when my epiphany occurred, I was actually having a Zoom meeting with the co-advisor of our much loved club, Active Minds. At least twice I said something about how “CrAzY” something was in regards to the total and normal OVERWHELM that accompanies this ongoing pandemic. My friend and colleague (to her credit) didn’t call me on it (though I wouldn’t have minded if she had), but y’all? American Sign Language is my second language! Therefore, facial expression, body language, posture, etc. are something I just pick up on as a normal part of any kind of communication, including verbal. So she tensed and her eyes popped wide; she calmly agreed with what I was saying but used better words like “disappointing”, “frustrating” and so on. I left that meeting determined to get back on track with using better words. Words that do not have negative connotations and stigma attached to them. It’s a “speech rule” that is important to me, so renewing this pledge to do better was also important to me.
Other Kinds of Poor Choice Phrases
This past week I was painfully reminded of other types of habitual words and phrases that are shockingly an eye-opener to the receiver. These are the kinds of phrases that make me WINCE – and I’m not always good at hiding that wince. I have a student in one of my face-to-face classes that says “what do you care, right?” and sometimes “what do I care, right?” It is very obviously a verbal habit because it rolls off the tongue almost like it is “filler”. For this student, I can only guess that it was habit, but self-fulfilling prophecy,Pygmalion effect, and abuse are likely culprits of using a phrase so frequently and out of context.
To explain how tragic this repeated verbal phrase is, we’ve only had two classes so far this semester and yet I know for a fact that I and others have noticed. Sure, the phrase was verbalized along with an eye roll, a self-deprecating chuckle, and failure to make eye-contact. It was not difficult to register the
in this oft-uttered phrase during our 10 minute after class “chat. Trust me. I’m no conversation guru nor interpreter police. However, I do pick up things like this because I *do* pay attention to facial expression, body language, posture, hand shapes (tense fists) and more when I communicate because I hear with bionics. I need those other cues for total understanding and clarity.
PERSONAL GOAL: Somehow, some way, let this student know during our semester together that I do. I do care. I care a great deal.
I would like to put out a challenge to every person reading this post who also lives with visible or invisible conditions or disability.
DO YOU FREQUENTLY AND HABITUALLY USE ANY LANGUAGE THAT UNDERMINES WHO YOU ARE?
It may not be words or phrases you even say out loud. Perhaps you only THINK these words that are ultimately harmful to who you are. You may need some help with this challenge. Ask someone else if you ever habitually utter negative words or phrases. Maybe even ask them to get back to you on it so that they can think about it. (BONUS: Perhaps they will also discover that they do this as well!)
If you are like me, we have been saying these things (or thinking them) so long that they are firmly entrenched in the way we respond and communicate with others. One of my siblings constantly smacks their head and says, “stupid, Stupid, STUPID” to themselves. Yup. That one is obvious.
Maybe (like me) self-deprecating humor is a way you cope or “deal” with your disability. Heck, many diversity champions and comedians use this means to educate and advocate. But y’all? You and I know when we are in advocate mode or bad-habit negative talk. Having a balance disorder, I am a klutz. I am constantly tripping, stumbling, and weaving my way around campus. For a very long time I would laughingly tell a concerned member of my “village” that “GRACE is not my middle name“. That is mild negative response really. However for ME, it started to fester a little. Every time I said this after an awkward stumble, I felt…
Now when I “skid around a corner and clutch at Finn’s vest while correcting my sliding right foot and over-compensating for a bounce of my shoulder off the nearest doorframe” (I kid you NOT), I simply say, “Whoa. That was a close call”. That’s enough for me now. I don’t feel less when I say it. Saying NOTHING does not work because I will be bombarded by well-meaning people in my “village” who ask if I am OK. Acknowledging my “close call” for some reason reassures everyone that I really am OK. “I’ve got this”. Recognizing negative language and learning to use BETTER words really does make a difference. It impacts self-esteem. Choosing BETTER words strengthens diversity advocacy and pride.
… NOT that there is anything wrong with therapy. I go to a counselor “as needed” myself! However, I learned early on in my living with disability, that boundaries are healthy, intelligent, and necessary.
“Daring to set boundaries is about having the courage to love ourselves even when we risk disappointing others” Brene Brown
Boundaries are Healthy (part 1)
I have what I call a servant’s heart, which comes from the fact that one of my love languages is “Acts of Service“. Doing little (and sometimes BIG) things are how I express love to other people. Doing little acts of kindness for others makes my heart happy and fills my own “love tank”. This includes acts for those I love dearly like family and “chosen family”. However, I also prefer to express love to my fellow human-being with little acts of service. So even my students (I hope) benefit from due date extensions for valid excuses, my bringing little miniature candy bars or granola bars to the class, and personally signing Valentine’s Day cards or other holiday gestures.
A dangerous misappropriation of an act of service, however, is to allow people to mistreat me or to pick away at my self-esteem and soul. When I was younger I would think to myself, “I will be the bigger person and turn the other cheek”. Other thought processes included, “If it makes them feel better to belittle me, I can let them have that because I know my own value”. Also, excuses such as “They have significant problems for which they have not received any help for, nor recognize their toxicity. I can ignore something they don’t recognize themselves”.
My friends? This is actually very unhealthy thinking. Retaliation is not the answer. Going on the “offense” or even “defense” is not healthy either. Both reek of BATTLE energy. Who wants to constantly be at war? I truly believe boundaries are healthy. My belief in this important work extends to training others as I do a workshop for people with disAbility. My goal is to teach others to recognize when and where boundaries need to be constructed. Boundaries ARE healthy and accomplish two things:
Boundaries speak volumes.
When we establish boundaries, we are telling another person who has been detrimental to our well-being, that “it STOPS right here”. It can be either an announced decision, or a quiet establishment of barriers that the toxic person discovers after a barb is deflected. At times, boundaries are necessary for family members and loved ones, for friends and acquaintances, for co-workers, well… really for any people we are (forced) into contact with by choice or by design that are detrimental to our good mental and emotional health.
Boundaries can include any of the following:
Refusal to spend time in the toxic person’s presence.
Blocking a toxic person on your phone.
“Unfollowing” or “hiding” a toxic person on your social media,
Filing a restraining order (if needed when the person is able to exact very real harm towards you).
The latter doesn’t even have to be a true legal “order”. At work on my college campus, another professor has a service dog – that isn’t. I’m not sure what skilled tasks her service dog does for her, but in the first year of her dog being on campus, I experienced 2 falls and 1 near miss as a result of her dog lunging for Finn (my service dog) and I. After numerous email exchanges and lots of defensiveness on her part, I finally had to go to HR and explain that for my safety (and I expect others) I needed to be able to avoid meetings with this other professor. Long story short, I knew I was a lot safer after requesting this boundary.
Boundaries may be either blatant creations or subtle constructions. It doesn’t matter which type of boundary you use, these boundaries tell the other person that you care enough about yourself that you refuse to allow them any form of abuse from this point forward.
Boundaries are good self-care.
Boundaries also speak volumes to YOU. Once I recognized that the pain and suffering I was experiencing from certain people was not a perk I OWED THEM, real peace became the “norm” for me. Once I determined that I was not required to allow anyone time nor space simply because we were related, I really began to understand safe boundaries. Once I accepted that a healthy boundary might mean “losing others”, I determined that any loss I incurred as a result of a boundary decision, was a loss easily reconciled. I have experienced loss of family members after refusing to allow a human I was related to any power over me with their venom. I respected those who rallied around the person who was toxic to me and cut me out of their lives. I found it was not easy but I adapted to “losing” those folks too.
I think it is hard to refuse “Denise access” to someone I am related to when they may have loved ones that I truly do value. My disAbilities have especially exposed family members who simply DO NOT GET IT and prefer to question or criticize my life choices. They don’t understand nor condone my work as an advocate. I am reminded of a quote by Glennon Doyle (a blogger and author), “This life is mine alone. I have stopped asking people for directions to places they’ve never been”.
One of my good friends divorced about 8 years ago. She discovered that even though everyone knew her spouse was verbally and emotionally abusive, when she cut him out of her life she also lost some friends. These were friends they shared and in-laws she cared for a great deal. Those losses were harder than the divorce, but time (and therapy) also taught her that even losses that were true LOSSES – those she felt at the heart and soul level – were worth it because of the person she now was.
These two things, what boundaries say to others and what they say to ourselves, are important acknowledgments that justify why boundaries are not weapons. They are evidence of strength and character. Do you need some boundaries in your life? Don’t hesitate. Make the decision today. You won’t regret it.
One thing I’ve often written about here from the viewpoint of someone living with disabilities, is that one of the hardest things to cope with is simply all the “normal” life experiences EVERYONE deals with, but dealing with it with disabilities.
I have a large network of peers who also write and advocate on behalf of the disability community. You would think God in His infinite grace, would allow people already dealing with a lot to be cut some slack with other kinds of challenges. That isn’t how it works though. “My people” often testify and share how hard life has been for them recently. People with disabilities still face the loss of loved ones, sickness (flu and COVID – aargh), break-ups and relationship implosions, job loss, traffic tickets, power outages, and running out of toilet paper! We don’t get a pass on tension headaches, occasional stomach upset, stubbed toes, or WIFI troubles.
Don’t get me wrong! I’m the first to stand on a soapbox and shout to the world how wonderful and worthwhile LIFE is. That doesn’t mean that life isn’t sometimes very hard, and it doesn’t mean that it doesn’t take work. If people with disabilities have one advantage over those who do not live with challenges, perhaps it comes down to these two things:
Experience has us recognizing our limits much quicker and more reliably than those who do not live with disability.
2. We are more likely to ask for help.
Today, my Mom took a fall (or two) just trying to do some normal daily activities. ALS is an unforgiving disease and it is always progressive. Mom has bulbar onset, which means early on it impacted her speech and fine motor skills. It is now impacting mobility as well, however. Hence, the falls today while doing normal everyday activities. My little brother texted while a little freaked out and I calmed him down. Then I proceeded to freak out myself.
Immediately after finding out about Mom’s fall and trying to get a grip on next steps, I went outside to my back porch. We are having very un-December-like weather and the dogs were romping in the yard. The sky was blue and there was a nice breeze. This place is usually like an oasis to me. Instead of enjoying the moment, however, I marched to the edge of the porch, looked up and stuck my finger at the sky while semi-shouting,
“Stop it! Pay attention! My Mom is getting hurt!”
Had a neighbor been watching they may have thought I’d lost my mind. I didn’t care and HE knew Who I was talking too with a little stomp to my foot, with finger pointing somewhere in the direction of where I imagined His face, and shouting about the injustice of it all. God knew I was fussing at Him.
After my little conniption fit and about five minutes of bawling my eyes out, I realized how silly it was to talk to God about what is “fair”. I mean life just IS NOT. We were never promised a life of FAIR experiences.
We are able to learn from experience, and what I have learned is that reaching out for help makes a difference. So I called my little sister in Texas and I texted my Mom’s sweet Monday-Friday caregiver, Sarah. It helped. We have a plan. It gave me a little hope and encouraged me.
My friend, don’t be afraid to rant to God. He can take it and frankly if anyone knows about Their loves ones suffering and things not panning out in a “fair way”, it’s God.
Don’t avoid reaching out for help. The reality is that we are allowing others to be a blessing to US and to help. I tell myself that by not reaching out, I am robbing someone of that opportunity to make a difference in my life that day.
Just being totally honest here, but I yelled at God today. I survived because He gets it. He really does.
I am currently all caught up on grading and the next due dates are not until midnight. Unbelievably, I have a slower day. Y’all? I hate slower days!
WAYYYYYYY to much time to think. Because I am a bit of a worrier (OKAY! More than a “bit”), if I am not busy, slower days are not good days for me.
*Uses Wyze camera to check on Mom* — What is she doing? Does she look comfortable? Does she look safe? She hasn’t fallen again – good. Does she appear to be resting well?
Right about that time all of my Elmos came crashing down on my back. Elsa (my kitty who acts like a cat – cuz we have one who does NOT act like one), is sitting at the top of the roll top desk staring down at me with her best snooty expression.
Elsa: yeah. SOOOO?
I gave her a good scratch under the chin and assured her she was still my stuck-up little trouble-maker. It took me about 10 minutes to get all the Elmos back in place and I ended up moving some around even.
When I was finished, I realized I was smiling. It’s the little things. Ya know?
Hearing Elmo always welcomes guest writers. This post is submitted anonymously on behalf of one of my many students who live with disAbility.
I learned at a fairly young age that people treat you differently when they know that you have a disability or chronic illness. I have struggled with health issues from a very young age. I didn’t know why I was sick, the doctors didn’t know what was wrong with me for years.
I have had joint and stomach issues pretty much my whole life. Doctors would blame it on my level of activity or my diet. That became a commonly heard thing for me, it was hard to change these factors because I would get injured so easily and my stomach would only tolerate certain foods.
After years of dealing with this seemingly never-ending cycle of health issues and doctor’s appointments, one of my doctors suggested seeing a geneticist. The original doctor suspected that I had Ehlers Danlos Syndrome or some other type of connective tissue disorder.
I saw the geneticist and he did an examination and asked me some questions. I fit the symptoms and had enough markers to be diagnosed. There was just one issue, it takes years of building the history to get the official diagnosis. It would end up taking three years and two shoulder surgeries to get my official EDS diagnosis. Sprinkled in those three years were countless support braces for my knees, hips, shoulders, back, and other things. I also had to have my gallbladder removed because it had been reduced to only 5-10% functioning, having it removed helped some of my stomach problems.
One of the things that EDS does is makes it so my body doesn’t produce enough collagen, which leads to laxity in the joints, skin, and other tissues. My shoulders didn’t have enough collagen to support them, I have had issues with them for a while, and eventually, they got so loose that they couldn’t stay in the socket. I had my shoulders fixed a year apart from each other. Unfortunately, I will have to have them redone every 3-7 years depending on how fast they deteriorate.
When I got my official diagnosis I was relieved because I finally had a name to put to all of the stuff that was happening, I finally knew what was happening to me. Some people in my life weren’t as happy with me having a diagnosis that there is no known cure for. It felt like they would rather just hope that I magically wake up one day and I am all better versus confronting the fact that this will never go away. It makes sense to some degree that they feel that way, but when you are a teenager trying to explain the newly diagnosed syndrome that makes you have mobility and functioning issues, you just want people to feel the same feelings that you do.
I have been excluded from things for years because other people thought I wouldn’t be feeling well enough to come, I just got used to it at some point. Kids in high school were mean to me before I had my diagnosis because they thought I was faking it, now it seems like they take pity on me at times. I don’t want pity, I want to be treated like everyone else and I want to have a normal, functioning body.
Author: Anonymous – Anne Arundel Community College student
I have been in NC since 7/30 helping my Mom with some doctor appointments and creating accessible spaces in her home. Did you know toothpaste delivery can be accessible?
We have butt heads a few times because she has very conservative tastes and I want the BRIGHTEST and most BLINGY choice that ROCKS my world and yours too! We are compromising, however, and finding a number of ways that Mom can be independent. I have been pleasantly surprised by the number of products that can help folks with mobility challenges.
Even though I am thrilled with all that I am finding to help Mom with those “small everyday things” that are now MONSTROUS in difficulty level when living with ALS, some things are still a struggle. As you know I am late-deafened and hear with a cochlear implant and have Meniere’s disease. Mom’s ALS is Bulbar onset and speech is a real challenge. Some days are better than others, but I have to really focus to understand her and she has to really focus to make herself understood. I’d giggle at both of us if I didn’t feel like crying.
Already I am seeing Mom do things for herself that are simply AMAZING from where I am sitting. Mom has very limited range of motion and strength in her fingers, arms and hands. Yet where there is a will, there is a way. Believe me! I have seen her struggle and adapt and push through every waking moment of each day.
I am even challenging myself a great deal. I absolutely REFUSE to use the phone. The struggle is “real” and my anxiety spikes, so I request email, texting, and webcam calls. Lo and behold, while here with Mom and assisting in making doctor appointments and getting information about assisted living places, I have found a few ways to actually USE THE PHONE. I use a combination of Speaker phone with Cochlear implant bluetooth technology. It is complicated and time consuming and I often have to preface every call with an explanation that I may need to ask for repeats, but I am doing it! Where there is a will, there is a way.
Mom and I continue to work on finding ways to do things that were once simple. Things like pulling a shirt on or off, opening closed doors, brushing hair, and putting on Toby’s (her Shih Tzu) leash, and using utensils. Sometimes we find adaptive devices to accomplish a task. However, although a design may help one person with fine motor skill challenges, it just doesn’t work for Mom. We continue to brain storm because where there is a will, there is a way.
As a long-time member of the disABILITY community, I know how important will power is. But ya know something? Sometimes will power is not enough. I’m not trying to be a “downer” or eschew the power of believing in yourself. However, sometimes the WILL to succeed is simply not enough to overcome. I am learning that this does not equal failure. When I determine the only way to “get it done” is to ask for assistance, that doesn’t mean I am not being independent. Sometimes independence means being willingly dependent.
I know! Right? But truly, sometimes independence means that we acknowledge we need other people and their help. This is NOT a disABILITY Advocate “deal breaker”. Think of it this way… asking for help and openly acknowledging I cannot do it on my own means:
I allow someone else to be a”help”.
I teach others that it isOK to not be OK.
I can collaborate with other folks about independence options. (Who knows who might invent some device to help others if I don’t explain the difficulty of a certain task?)
I provide the BLESSING of helping ME.
Having the will to be independent is one thing. Acknowledging the inability to actually do something without assistance is another. It’s not will power y’all. I will always need Finn (my #3 service dog) or someone else’s help to go from a seated position to a standing one. Standing up is not successful because of will power. For me, success in standing means I use the help available to me.
Do you struggle with certain tasks and everyday chores? There is a wealth of assistive devices out there! They aren’t free (though should be for those that need them) but great minds have discovered ways to independently accomplish a great deal of everyday tasks. Using “helps” doesn’t mean you lack will power. If anything, it means you personally house a wealth of will power. For you will take advantage of whatever help is necessary to SUCCEED. After all where there is a will, there is a way. Sometimes that means accepting help.