Write It All Down and Make Dinner

I was reminded this week of how difficult chronic fatigue can be on our loved ones.  As painful as it is to be sick, it’s doubly painful to watch those around you suffer because of your sickness.  For me, as a wife and a mother, the inability to take care of my family was not only heartbreaking, it was cruel, and it was something I could not accept.

I can’t imagine it would be easy for anyone, but I also had baggage.  I had lived this before, as a spectator.  I grew up watching my mother deteriorate due to illness.  When I was about seven, she was diagnosed with a benign brain tumor.  Over several years she went through surgeries, chemo, and a barrage of medications, but the doctors were unable to remove the tumor.  My mom spent the majority of my childhood sick.  Medicated.  Forgetful.  Tired.  Sad.

I can only imagine how it changed her.  I was told that before she got sick, she was a strong, energetic woman who never sat still.  The mom I remember though, is one that slept a lot and was always tired.  She took a nap every single day before my dad got home from work.  She would stay in bed all day when she could.  The medicines she took made it difficult for her to remember anything, and she couldn't drive or go anywhere alone.  She had “good” days and “bad” days.  She kept a calendar to keep track of them.   

Since I didn’t get to know her before she got sick, I always wondered if I was like her - the “her” from before she got sick.  We all turn into our parents, right?  Would I grow up to be like her, even though I never really got to know her?  Would I share anything in common with this mystery woman who existed before the tumor, but I had never met?  Years later, what I didn’t expect was to find myself suffering from pain and chronic fatigue, and seeing myself turning into the mom I did know, the one who had been sick and tired all the time.

When my pain and fatigue became so strong that all I could do was nap and sit at home, I saw the parallel between my mom and me.  I at once identified and sympathized with her on a level that only shared experience brings.  It was the first time in my life that I actually understood my mother. 

That thought tore my world apart.  Fear, multiplied by the fact that the cause of my condition was still unknown, crippled me.  How could I do this?  How?  How could I look forward at my life and know, KNOW, what was coming, and how it would feel to those around me?  How could I face this, and how could I let this happen to them? 

My mom had long since passed away; I couldn’t call her and ask how she did it.  So, I fell back on the only thing I had.  I looked at her actions.  I know that she had a rough time handling her sickness (she would tell me, on the really bad days).  She fought depression and exhaustion daily, but she didn’t give up.  Instead, what she did - she cooked us dinner every single night.  No matter how hard her day had been, or how bad she felt, she always, always made dinner.  That was her thing.  Nothing else might ever get done - there was no homework help, she never did my laundry, she never styled my hair, took me shopping, or cleaned the house - but there was always a home-cooked meal.  To fight the memory loss, she wrote everything down.  Her memory was horrible; she knew it, and it frustrated her to no end.   So, she carried a notepad and a pen in her pocket all the time, and wrote everything down.  As long as she could refer back to her notes, everything was ok.  These two simple acts helped her stay sane. 

I was a child, and my memories are through child eyes, but this is the legacy that she left me, and surprisingly, it was a good one.  I tackled my pain and fatigue and feelings of helplessness exactly like she did.  I started making dinner, and I wrote everything down.  I may have been completely, utterly useless in all other aspects of my family’s lives, but this was something I could do.  We could have dinner; we could sit at the table and be a family.  Writing things down meant I didn’t have to be so frustrated that my memory wasn’t working, and cooking meant I was still providing for my family.  It’s the oddest advice I think I’ve ever followed, but it’s the best thing I ever did while I was sick.

So here’s to my mom and everyone who's faced something that keeps them from taking care of their loved ones.  Find your thing.  They'll understand.  Make dinner.

Comments

[Amy]

Thank you for sharing your story. Obviously, you are a very strong person and a great mother. I hope today you are feeling strong and well!

[Geoff]

This is a ver powerful tribute to your mother, and all the more appropriate since I read it the day after Mother's Day! Thank you.

[rob]

I was a normal kid until my 9 years old when I was affected by a horrible dyshidrotic dermatitis.

This was in 1979 ! The disease nearly killed me. Taking lots of steroids and anti histamins could be good for a kid.

I succumbed to the disease, got fat, couldn't play with my mates, couldn't go to the beach as my nickname was 'scabies' hahah

Anyway...it took 34 years to find about this nickel thing. I hope this is the cause of my eczema.

Starting from today I will start a low nickel diet and increase my intakes of vitamin C and iron foods. I think I will stick with a vegan option ( herbs like parsley for example )

I will keep you informed. At the moment I have just a small patch of blisters in the sole of my left foot but it is under control with no medication, just the occasional E45.