LIVING WITH A DISABILITY

 I am a tad nervous about giving this title to my blog, as I am:

--not in a wheelchair

--not legally blind and can still drive

--do not have POTS

--can walk often without a cane

--and am reasonably sane, except for my wild, excessive buying habits.

 It is a sobering thing to realize that you have a disability. Recently, two dear women friends invited me to a small get together under a shady Maple Tree to talk and catch up. Did I get this right? Noooo....I went to the wrong friend's house first, texted, "Where are the cars?" Walked around the back of my friend's house, almost fell on their deck, and came back to get help from my friend's dear husband. At least I got a grand hug from him.Then I was half an hour late to the gathering at my other friend's house. I hated to do this, but after the lovely time together I emailed both with this info:

--I am actually disabled and have the special parking permit to show for it.

 

--I get confused easily and make mistakes, so keep that in mind when we make plans.

--I do not see or do the numbers above a text which you send to me. In future, please sign your name so I know who it is from.

  Sigh. "If I only had a brain...." as the Scarecrow so tenderly put it. I used to have one. Then cancer hit, then months of chemo, and somehow, I have lost a few neurons along the way. They can regenerate, and I am sure some have, but no question there are gaps in memory, focus, and understanding. (For those recovering from cancer and chemo check out the book, "Picking Up the Pieces," for lots of good info on where you may be now.) But I am still cute! And wear makeup and buy nifty clothes from my fav Stitch Fix! (Probably this health history is one reason I spend so much money on clothing....)

  Sometimes I count up on my fingers the various conditions I have, and please, do know that this is not complaining nor am I whining or whinging as the Brits would say. This is part of accepting the reality of my life now, and acceptance is the way to go.

1/ Osteoarthritis (knee replaced and hip replaced).

2/ Osteoporosis, worsening.

3/ Orthostatic Hypotension, developed after chemo. Often an autonomic nervous system disorder happens after chemo, or an accident or trauma. This manifests as extreme dizziness when changing positions, and sometimes falling. Am on meds to control it, and have an Apple Watch which tracks your falls and calls Emergency Services if necessary.

 Not sure if my occasional "brain crash" is part of this, when someone--usually my husband--asks me a question and I am unable to answer with cotton fuzz for a brain and possible drooling ensuing, though I try hard not to drool.

4/ Chemo brain.

5/ Wet Macular Degeneration and some sight loss in left eye.

6/ I know there is another one but can't remember it. Does Dupytren's Syndrome count? I doubt it.

  Recently my youngest son has been diagnosed with Ehlers-Danlos Syndrome, a genetic condition that effects the connective tissue in joints.

 This would explain the chronic pain in feet, legs, and hips he's had from dog walking over the years. Also under this umbrella diagnosis are: brain fog, fatigue, GI issues, food sensitivities, temperature disregulation, depression, anxiety, some POTS-like symptoms, and there may be more, but that's all I can remember for now. There is no cure, no pill to take, but it is all about managing one's condition. Which he is doing.

  So we share things through texts and face-to-face visits (my favorite), often using The Spoon Theory to express how we are feeling. (See, 

"www.butyoudontlooksick/christine-misericando.com) It is wonderful, despite all, to have a listener who "gets it" and knows what it is like to have a disability. And, as you know, the internet is fabulous for connecting you with people in support groups who share your condition. I often learn crucial things through these groups.

 Some great groups to investigate are:

--Fight Like a Warrior

--The Mighty

--Chronic Illness

--But You Don't Look Sick

--Dysautonomia International 

--NY Times Wirecutter article, 8/23/21 on toys for disabled children. Fascinating!

  Again, I know I am lucky. It could be much, much, much worse. I am still functional, find joy in life, adore cooking, love my husband, family and friends, go to church when I can, watch birds, exercise, and--oh, yeah--try on new clothes and fiddle with my hair, as I have done since the age of 12.

 For those of us with a disability, I find it helps to celebrate all the things you CAN still do. Nurture a practice of gratitude. Try and find ways to give out to others less fortunate. (I mostly do this through giving money through Save the Children and Catholic Relief Services.) If those of you without any disabilities don't understand someone's condition, ask. Just say, "What is it like to be you? I would like to know more. Are there ways I can help you?" These questions are all balm to one's soul, and I gather there is a special saint governing disabilities who sings, possibly off-key, when someone puts out these questions. Salut to all who struggle! Salut to all who understand!