Just like Alice | It's Me Laura Lee

August 15, 2019

Just Like Alice

The stench was horrid.  Like rotting flesh.  What was worse is that it was my flesh.

I had an infection along my C-section incision and the incision was oozing.  Ironically, while doing a search online I found the OB who delivered my daughter and told him that I thought my incision was coming open.  He seemed dumbfounded.  It had been years since I had given birth to her –  my youngest, but he insisted I get to the doctor right away.  I called the doctor’s office and told them what I thought – my incision was coming open and it was oozing.

It was itchy.

It was painful.

And, it smelled awful.

They got me in right away.  I was escorted to a room with not one, but two doctors.  I suppose they thought I was going to be an interesting case.  It turned out I wasn’t so interesting after all.

My incision was fine.

It wasn’t open.

It wasn’t oozing.

It did smell awful.

It was red.

It was itchy.

It was painful.

TREATED WITH KINDNESS

 

It’s because I hadn’t showered in days, maybe longer.  I honestly can’t remember how long it had been, but I know it was summertime which made it worse because…sweat.  I have what’s commonly referred to as an apron of skin – the fat that not-so-adoringly hangs down and makes my belly button droop.  Technically, it’s called a panniculus or pannus.  There, you learned something new today.

I had a fungal infection.  And, it was bad.  I was given ointment and strict instructions on how to take care of the infection – washing, keeping it dry, etc., but here’s the thing.  There was no judgment.  None.  I was treated with kindness by both doctors – both male doctors.  This was at the VA Medical Center in Lebanon, PA.  They had access to all my records.  They knew I had major depressive disorder.  They knew I was a rape survivor.  They obviously knew that just staying alive was a daily battle.  I was having a difficult time with ADLs.

And, often, I still do.

Activities of Daily Living (ADLs)  and Instrumental Activities of Daily Living (IADLs) are often thought of when assessing our aging parents and grandparents and their abilities to take care of themselves, but they’re also very real obstacles in someone who has mental illness.

So, what are these ADLs and IADLs?  First, they’re basic tasks that a person needs to be able to do to not only survive, but to thrive.  Talk to someone in a major depressive episode, and I guarantee you that it’s hard enough to dig deep to find the will to survive, much less find something in your soul that shouts, “you will thrive!”  No.  No.  Our souls are shouting, “Go back to bed.  Go to sleep.  Go to sleep, but don’t dream.  Wake up when everything is better, and not a second before.”

 

Getting a shower every day is an actual written goal I have.

 

ADLs AND IADLs

You’ll find many variations of ADLs and IADLs, but these are the basics…

ADLs:

  1. Personal hygiene – bathing and grooming, oral care
  2. Continence management – the ability to use the toilet properly and having control of bowels/bladder
  3. Dressing – the ability to select the wear properly clothing for the appropriate weather/occasion
  4. Feeding – the ability to prepare a meal and feed themselves
  5. Ambulating – the ability to walk independently and transfer from one position to another

 

IADLs:

  1. Managing finances – balancing checkbook, managing assets, and paying bills
  2. Transportation – driving themselves, using public transportation or finding other means of transport
  3. Managing household – housecleaning, laundry, and home maintenance
  4. Communicating with others – using the telephone, cell phone, email, or mail
  5. Managing medication – obtaining medication and taking as directed
  6. Shopping – shopping for meals, clothing, and other household essentials

 

You may think that these things are no-brainers, but truly they’re not, as evidenced by inability to keep myself clean and healthy.  There were other things I wasn’t able to do though, too.

I wasn’t paying the bills.

Scott had to hand me my medication.

I couldn’t go shopping by myself.

I didn’t drive – as in, I didn’t have a driver’s license.

Clean clothes were a luxury.

I avoided phone calls.

I avoided people.

I wasn’t opening the mail.

I wasn’t cooking.

I slept all day.

Or I didn’t sleep at all.

Obviously, I wasn’t bathing.

I stayed in pajamas all day unless it couldn’t be avoided.

The school often called to remind me to pick up my daughter.

And I wasn’t brushing my teeth.

And, so many more things.

 

JUST LIKE ALICE

 

I was in deep.  And, I was falling deeper.  I was Alice – falling down the rabbit hole and watching everything as it passed me by.  Except, my rabbit hole wasn’t fanciful, it was dark.  The dong of the clock bellowed and echoed between my ears.  The mirror reflected back to me an image I did not recognize, and yet it cried when I cried.  It was angry when I was angry.  Falling through the center of the earth was something I longed for.  It was a way out without having to be the one responsible for the path.

Or just maybe, I was the Mad Hatter.

Photo by Paolo Nicolello on Unsplash

Things didn’t get easier.  My infection cleared up, yes, but that was the highlight of my life.  Even my children didn’t bring me joy.  I distinctly remember telling my therapist that I wanted to want to be happy.  I wanted to want to play with my children.  I wanted to want to be me again.   I wanted to want to feel something other than despair.   Those aren't typos.  I wanted to want.

 

DISABILITY

 

Eventually, I would take a slew of personality tests and psychological inventories.  And, the Global Assessment of Functioning (GAF) scale was used to assess my daily function – more than what the scoring system of ADLs and IADLs can do.  The GAF scale is still used by clinicians, but it is no longer found in the Diagnostic and Statistical Manual of Mental Disorders (DSM).  I scored a 35 on a scale of 0-100.

From healthline.com:

“40 to 31. Some impairment in communication, psychosis (loss of touch with reality) or both, or major impairment in school, work, family life, judgment, thinking, or mood.”

Now, the WHODAS 2.0 (World Health Organization Disability Assessment Schedule 2.0) is used with a score of 0 = no disability and a score of 100 = full disability.  I don’t know what I’d score on WHODAS 2.0, but at a glance, I know I’d do better.  Some months.  Most months. Not all months.

Six months later, I would be awarded disability from the VA for Major Depressive Disorder (MDD), but not before inpatient hospital stays and a long trial and error of medications, but Social Security turned me down.  The judge said he thought I was faking and thought my psychiatrist was lying.  Yes, the judge said those things to my face.  In fact, he asked me to prove that I never had a driver's license in any of the 50 states.   He was later removed from the bench, but the damage was done.  It was many many years before I was able to return to work.  Many years before I could help support my family and even then it only lasted for a couple of years.

Now, some ADLs are goals…like getting a shower every day.  Generally, I complete it more days than I don't, but I still have weeks here and there that Scott questions me…wondering if I'm slipping again.  If I'm falling down that rabbit hole.   Over the years he's learned the language to use.  He knows what works.  How to be firm, but gentle.  You can learn, too.

If you know someone who is having difficulty with ADLs or IADLs, it may be time to intervene.  We can’t do it alone.  But do it without judgment.  We want to want to get better.  We just don’t always know how.

 

The comments +

  1. JANE

    August 19th, 2019 at 7:16 PM

    DEPRESSION IS A DISEASE AND THANKS FOR SHARING YOUR STORY LAURA. ONE DAY AT A TIME…

  2. Cynthia

    August 26th, 2019 at 5:40 AM

    Your posts are always so beautifully honest. I know that it will be so helpful to people who are going through similar experiences. I love how you emphasize the importance of intervening, but without judgement. Thank you for sharing.

  3. Lisa

    August 26th, 2019 at 5:41 AM

    Thank you for sharing your life and story. Keep taking it one day at a time. That’s what I do.

  4. Jasmine

    August 26th, 2019 at 6:14 AM

    Thanks for sharing this Laura! It takes courage to let people in on the most vulnerable aspects of your life. Keep pushing!

  5. Matt Epley

    August 26th, 2019 at 6:27 AM

    Thank you for such vivid and brave insight into your experiences. So many people are unaware of the struggle.

  6. Jordan

    August 26th, 2019 at 6:38 AM

    Thank you for sharing. You portray your story so eloquently.

  7. Malia

    August 26th, 2019 at 7:44 AM

    Your raw posts will help so many become more aware! Thank you for being open and honest.

  8. Ramae Hamrin

    August 26th, 2019 at 8:06 AM

    I understand this well. For much of my life I have struggled with depression — both the can’t-get-out-of-bed kind of blues and general lack of genuine happiness and enjoyment. I appreciate the courage, honesty and education in your posts.

  9. Lisa Manderino

    August 26th, 2019 at 8:55 AM

    You have been through a lot. Writing it down to help others who are suffering and reassuring them that they are not the only ones gives hope to those that need it.

  10. Akiko

    August 26th, 2019 at 8:58 AM

    Thanks for sharing! I was aware of ADLs but haven’t heard of IADLs. Great to know the additional signs to look for, for anyone who might need just a little more support!

  11. Karie

    August 26th, 2019 at 9:36 AM

    I have never heard of ADLS but this morning I am no stranger to depression and anxiety. I am at a total loss with 3 girls that are living with me that suffer with this and won’t get up and go to school. Mental health is so hard. Thank s for sharing.

  12. Stacy

    August 26th, 2019 at 10:01 AM

    Thank you for sharing your story. We need to hear more stories about mental illnesses, so we can end the stigma and work towards helping those who need it! I’m glad your doctors were so kind. I’m sorry that judge was so awful!

  13. Angela

    August 26th, 2019 at 10:27 AM

    Another moving story. I am so sorry for that ordeal with the judge, ugh!

  14. Pauline Reynolds

    August 26th, 2019 at 11:25 AM

    Daily living skills are something that we take for granted. But they are so hard to do, when you have symptoms. It sometimes does take a gentle or a firm push to get going and meet your basic needs.

  15. Magan

    August 26th, 2019 at 11:30 AM

    I appreciate you sharing your story. I think so often it’s considered taboo, but that’s just not the case. It’s okay-helpful, even-to share.

  16. Candy K

    August 26th, 2019 at 4:46 PM

    Thank you for sharing and helping others. The world needs more people like you.

  17. Leigh Ann

    August 26th, 2019 at 6:49 PM

    I have worked as a social security disability advocate for more than 25 years and understand the struggle to do ADLs is so real. Thank you for sharing your experiences to help others.

  18. Carol

    August 26th, 2019 at 7:15 PM

    Hi Laura, thank you so much for sharing this important information. I don’t struggle with depression, but I have several close family members who do. It’s so critical to make sure they are taking care of themselves and you have offered some very practical advice.

  19. Kendra

    August 26th, 2019 at 9:39 PM

    I love your honesty in telling your story. I pray it helps others and you as well.

  20. Suzan

    August 27th, 2019 at 3:53 AM

    Your stark honesty is so courageous. May it be of help to many, both with and without these issues. Thank you for your insights.

  21. Heather

    August 27th, 2019 at 3:59 AM

    Thank you for sharing, The more we know and understand depression and what people may be feeling, the better equipped we will be to help.

  22. Cindy

    August 27th, 2019 at 6:20 AM

    Thank you for going in depth here. I know people who do struggle with daily routines and I feel like I understand them better now.

  23. Jennifer Morrison

    August 27th, 2019 at 8:56 AM

    I find you story so interesting. I know a few dear friends that have the challenge of depression, and this gives me great insight.

  24. Jami

    August 27th, 2019 at 2:02 PM

    I love your honesty! It is probably not easy to open up about this experience, but doing so WILL help someone else who is struggling or knows someone who is.

  25. Kat Califf

    August 27th, 2019 at 7:15 PM

    This is something that is so important to talk about and isn’t discussed nearly enough. I have suffered from depression myself and so I really relate.

  26. Maria

    August 27th, 2019 at 10:11 PM

    I too think it’s fantastic that you are willing to share your story, with such honesty. I imagine it helps you deal and accept it all at the same time, because writing is so cathartic.

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