ONWARD ~ and ~ UPWARD

Judith Florian, R.N.

I remember my "normal life."  

I drove over 20,000 miles a year, with nothing more than the average stiffness of being behind the wheel for hours.  When I "ran errands" I could literally "just run in and out."  I could carry 4 large paper bags of groceries in my arms and balance 2 on my knee in order to fumble with the house key, unlock the door with no problem, and never dropped any of my bags.  I could almost literally "jump in" (and out) of the shower in 10 minutes.  I'd flip my hair over, bending at the waist, and blow dry my hair, and be ready to leave the house in 30 minutes - tops.

(Fast-Forward)

 I remember these changes in my life from just five years after my back and shoulder started bothering me:
- Gardening a 10-foot by 20-foot area, but having to stop after an hour;
- Still driving, even long distances, but less frequently;
- Having to ask for more help when inside stores, and getting my purchases to the car;
- How stairs started bothering me...and my shower was downstairs; 
- How hard it became to wash waist-length thick hair because my shoulder injuries made it hard to reach up;
- Re-arranging my kitchen shelves so that nothing was on the top shelf, all needed items were kept on the lowest shelf, and things I used once a month were on the second shelf...

(Fast-Forward)

I remember these changes in my life from ten years after my back and shoulder started bothering me:

- I stopped driving except occasionally (but couldn't give up my car); 
- I continued to garden but less, and had to hire neighborhood kids for yard-work;
- I couldn't take walks anymore because what little walking I could do had to be saved for doing necessary (only) shopping; 
- Giving up more things I had enjoyed; doing less and being embarrassed about my weight gain;
- Letting housework go so I could just do necessities, like cooking and laundry;
- Praying at night that the pain would end...

(Fast-Forward)

I remember these changes in my life from fifteen years after my back and shoulder started bothering me:

- I spent a year in a hospital bed because of another medical problem (plus my back and shoulder problem) - and my back got worse;
- Trying to explain to doctors about the new "burning pain" that developed, and no one believing me or understanding;
- Not driving my car for an entire year (so long that the battery died and all 4 tires developed a flat-spot on the side resting on the drive-way);
- Losing 100 pounds from not eating because I could no longer stand long enough to make meals;
- Listening to my neighborhood's activities that first long summer that I was in bed, wishing I could simply go outside (and knowing I couldn't even get out the door alone because of the pain);
- Trying to think of something new I could try to make the pain less and make me better... but everything I tried failed;
- For the first time, thinking of getting rid of belongings so I'd have less to deal with in my house (and, in case I got any sicker); 
- Wishing I could just take enough pain medicine to make me oblivious to the pain...

(Fast-Forward)

I remember these changes in my life from twenty years after my back and shoulder started bothering me:

- Having been dealt a life spent mostly now in bed (and already trying to cope with the isolation with reading, TV and puzzle books), deciding to use the time as productively as I possibly could with things that interested me;
- Having to rely on "somebody else" for everything that was beyond the area of my queen-size bed;
- Coming to a point that I actually hated the bedroom walls that surrounded me;
- Not driving once in 5 years;
- Realizing it had been 90 days since I had been outside or breathed fresh air (only going out to go to the doctor's office);
- Realizing no one wanted to help me go outside, or go anywhere, because it caused me so much pain and was too difficult on the other person;
- Realizing I only got to see the tree-tops and telephone poles & lines, because I always had to lie down on the back seat in order to travel;
- Realizing that as much as I loved my cats, being with them 24 /7 during every week, every month, every year - year after year - was just too much!
- Realizing that doctors did not know how to help me;
- Realizing I might just be stuck in bed for "the rest of my life";
- Realizing that I had already been using ALL the coping mechanisms I knew to use --- and these were no longer working to get me through each day;

- That whatever was going to happen was never going to be from another person stepping in to help.  No one really cares when a person ends up in this kind of situation.  Their own lives preoccupy them; the needs of an "invalid" are last on someone else's list.  And I realized that overall, I have become an object in other people's minds.  I am "here" but not really here as a human being.  I am "here" in other people's minds much the same as a piece of furniture that can be left where it is until it absolutely has to be dealt with or moved.  I realized that, even if my body refuses to cooperate, I still am the ONLY person who gives a damn about what happens to ME.  Even if my body won't allow me to easily get around, I am the ONLY person who cares if I eat, get water, get medical care, get my hair and body washed....

And I realized a peculiar thing that I still don't understand.  Society at large is two-faced on the subject of disabilities!  While most people SEE what a disability prevents someone from doing, society STILL EXPECTS the disabled person to manage and take care of their own life!