Today, unlike any day before it, I woke up to an unsettling situation. You know that feeling of “I was afraid this was coming, but I’ve never been here before, so I wasn’t sure I would recognize it”? Yeah, that. It is followed closely by “This obstacle, however, is familiar, there’s some bureaucratic nonsense stacked over here with people who just don’t do their job mortaring the whole thing together”. Yeah, that, too.
I have to manipulate all my body parts in unison to work through this. Welcome to my Heart’s role in this. Word it out….some oddly placed humor….some salvaged memory….some stringed together hope. See if we can crochet a cover without completely washing over the cliff.
My brain knows a few things. It knows exactly (to the dollar and cents) what resources make catastrophic health events survivable. It isn’t all about the healing of cells and the positive imagery that gets you to the other side. One has to live. Pay rent, buy groceries, keep the cell phone active, travel to and from the hospital (these days it is a 4 days a week gig), and keep the family functioning. Insurance must be paid, for the car, life, health. Bills don’t disappear in these cases, the mailman still brings invoices. We got one the other day for health benefits from work. We are now being invoiced for health insurance, since leaving employment was (as they term it) voluntary. Well, yeah….he does have cancer….and a nasty one at that. We’ve lost 2 homes to cancer. Every dime in savings. Our credit score. We recently surrendered our only car to the loan company (a dear friend has generously stepped in to help here). We moved from a rented home to an apartment, downsized.
Disability stemming from cancer, both the time during treatment and the lingering effects that may never go away, is subjective. We have encountered plenty of paper pushing, key punching, plastic earring wearing, chip eating (no kidding) administrators who have become charged with the subjective decision about whether you stand a chance in receiving money as payment for something they decide is or isn’t disabling. My eyes roll to back and to the left when I meet this wall. I have a list available, when necessary. Before cancer diagnosis: Healthy, 59 years old, 210 pounds, able to lift 75 pound disabled child, rode large motorcycle on daily commute to work, regularly employed professional,no healthcare intervention history (the cat did bite him once, he got antibiotics and tetanus shot at urgent care back in the 90s) intelligent. After cancer diagnosis: immediately off work per Drs orders, multiple surgeries and diagnostic tests (the big ones), Bone Marrow Transplant, 45 weight loss, unable to walk without assistance, prescriptions x23, medical services expected to reach $1,000,000.00. Memory loss is evident, complete sentences are rare. The valves in his legs are damaged from chemotherapy. His vision is 20/800 (graft vs. host disease). He is susceptible to every virus, bacteria and allergy known. He is immune compromised. He has a chemically induced diabetes and is insulin dependent.
Today’s wall is a doozy. The big picture has been graffiti’d across it. Here we have a previously hard working Veteran who enlisted DURING Vietnam. We have managed a family of 5 children over 30 years. We weathered 2 other cancers in the family (son #2 and my mom) and we live (happily) with our 14 year old profoundly disabled #5. Can it get any more difficult?
I’m walking away from this wall and moving laterally until I come to the next one. My only hope is that the next wall is short enough for me to climb over. The best scenario would be if there was someone waiting on the other side to help us over. There’s no disability check and I am not sure I have the strength to wield a hammer at the next wall.