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.
Jensen, MP and Terrill, A. (2012). How to Sleep Better [Factsheet]. Aging and Physical Disability Rehabilitation Research and Training Center. University of Washington. http://agerrtc.washington.edu/
Hearing Elmo 