We had an ongoing joke in my mother’s home, “That Doesn’t Count”.
Mom’s COPD was first diagnosed about 1988, and from that point onward, insurance coverage got harder and harder to obtain for the use of the benefits she was paying for as the health records became digitalized, and could be data-mined to blame her for her illness and deny her coverage. Profit above the concept behind buying insurance to assist if something goes wrong and life hands you a rainy day, season or life.
Like Leonard Nimoy, Mom was a smoker, and so there was lots of shame and self-recriminations because she found it impossible to beat her addiction. Similar to Daisy Gamble in the film, “On a Clear Day”, she tried hypnosis and many other alternative medicine therapies but nothing worked. Smoking was her go-to habit that she just couldn’t quit.
While my sister and brother harped on her to stop smoking, I knew the truth. It was too late, and stopping her 1 addictive joy wouldn’t change anything. They didn’t or couldn’t realize how much help she needed in the home. Stairs were off limits. Yet the washer and clothes dryer were in the basement. Up and down an exhausting set of stairs. If she didn’t do her own clothes, no one else living in town would. I knew, though. When I challenged her on the exhausting realities of her weekly / monthly / quarterly routine for getting things done and the physical barriers she faced, I’d get her standard response, “Stairs? Oh, that doesn’t count.”
Eventually, I talked her into selling her home and moving into a condo to reduce the amount of space she had to maintain, so that she could maintain her independence as her world got smaller and smaller as the disease progressed. I flew back from CA five times in a year to help her pack up her home and sort through her possessions to reduce the bulk. Meanwhile, my brother and sister lived withn 5 miles of her home and were oblivious about the reality of her abilities and how hard she worked to hide the truth.
I guess my early years, spent mostly bedridden, gave me a more realistic insight into her situation and how best to support her decisions.
To illustrate… When I was well enough to be allowed out of bed and off the leash, nothing was going to stop me experiencng all that life had to offer. Climbing trees. Horseback riding. Jumping off the swingset at the height of the swing.
Despite cutting off my pointer finger (successfully reattached), head wounds, ankle injury bike riding, leg impalement, being tossed off a horse, being dragged downhill (a chest-first belly-flop in a bikini when a rope swing over the lake went horribly wrong because I just didn’t have strength in my arms due to my chest muscles being cut – again – for yet another repairative surgery), etc., etc., etc., I wasn’t going to be contained ‘for my own good”. So, I had a clear and realistic insight as to the source of her denial, and refusal to ask for help. If you ask for help, you are less. Less capable, less autonomous, less (whatever). By asking for help, you are making yourself vulnerable to someone else’s judgement. If you were in need, after all, shouldn’t they just notice, and volunteer? So many crazy, conflicting emotions and cultural messages to wade through. So, I learned to bull my way through things from a wonderful woman and a perfect example for, “Do what I say, not what I do”.
Despite hearing my Mother’s voice any time I was allowed off the leash, “J______, you WALK !” being bawled at me across woods and playgrounds, I ignored her fears or her good intentions and did what I wanted, regardless of the risk, regardless of my parent’s financial worries for another medical bill, regardless of any measure of good sense. I was alive, and I would worry about the repercussions tomorrow for today’s choices.
Despite it all, however, I understood very intimately the fight to live and do what you choose, just because you’re not dead yet. Not merely “still alive”, but more an acknowledgement that no one ever gets enough time in life, so it’s up to us to seize life with both hands because only we know what makes life worthwhile to us on a personal basis vs. an endurance of tedium and restrictions to ensure we keep on living while sucking the joy out of whatever life we have left. Or, heaven forbid, to be beholden for someon else, no matter how loving, expecting gratitude for sitting in judgement on your health circumstances.
So, it’s incredibly hard for me to be lectured in all the COPD literature about stopping smoking.
I’ve never smoked. But, I do know, intimately, how pointless it is to lecture someone about something they already know. Especially when it involves an addiction.
When your life is built upon beating the odds, however, it’s important to focus on what you can do, vs. what you can’t do, or shouldn’t do, as part of making the best use of every minute we have on this earth. Stuff has to get done. Choices have to be made (as there’s never enough time and energy to do everything we wish to accomplish).
As her energy waned, I saw my mother shamed, under the presumption that her smoking caused her COPD, and I live in contrast to her particular situation. Kind of a “tough love” version of ignoring a handicap or a frailty because “you only have yourself to blame”.
Ridiculous thinking – to blame the victim, however, I grew up with a variation on that same shame stigma because of my frailties – even though I had done nothing to earn such a difficult journey.
Truly, there are many folks who believe that suffering must be penance for some yet to be discovered character flaw, or as a penance from a prior lifetime of evilness. Crazy, but that’s just one of the many unspoken messages I picked up from an indifferent culture who wanted me to either be miraculously cured, or hurry up and die. Regardless of my reality, I was a waste of precious resources, so I needed to suck it up and move along.
To quote: “There were plenty of people who had it worse than me.” (That thinking will be the subject of another blog).
If I was asking for less hassle because I was ill, I must have done something to turn God’s love and healing light from me. Society had no time or interest in the reality of my life as a survivor, flaws and all. They wanted hale and hearty, or they wanted me gone so that I wouldn’t be taking up space, possibly “contaminating” the healthy folks.
When comparing Mom’s illness journey and mine for dealing with COPD, there appeared to be only 1 visible difference: I had birth defects; I have a partial excuse.
Due to my first-discovered birth defect (there were more) I had a pectus excavatum (rib cage deformity; fixed multiple times before I said, “enough”), and I, too, grew up in a household where second hand smoke was the norm (just as she did for the whole smoking issue). I therefore submit that my COPD is through no fault of my own. There was nothing I could have done differently in my birth or formative years, so I refuse to feel shame. If Mom had never smoked, the bad lungs gene was already in our family tree, so she might also have ended up with COPD regardless. That’s the fickle finger of fate that I rail against. Why is one person’s life so blessed and another’s so challenged? No answers here, but it’s just something I think about for evolutionary variants as I see so many people struggling to survive, to remain independent, to be happy despite their realities.
I just wish I could have gotten it through to my Mother that shame doesn’t help and that sh*t happens, despite our best intentions. She grew up in a house of smoking parents. Her siblings all smoked. 1 sister has already passed due to COPD and other health complications. The other sister is gravely ill with COPD, and other health complications, despite ceasing smoking almost 20 years prior to her diagnosis.
Life is what you make it, and how you deal with the spanner thrown into the works is just another challenge to be faced down and defeated or endured. Shame has no place in my story, so I will talk loudly and without embarassment about my challenges and how I’ve adapted and continue to evolve to pursue life without regrets over things whch are out of my control for changing.
If we are going to insist that people live, that they use whatever talents some nameless, faceless, yet-to-be-proven higher power has bestowed upon them, then we must accept that bumps, bruises and damage happens and is a normal part of the journey through life as less than perfect beings. Recriminations about things that can’t be changed is a pointless exercise. No one can live in a cage, regardless of how pretty, well padded or gilded. Sh*t happens.