My Other Me
A tribute to the passing of my wife and advice to new caregivers and patients with ALS.
My Earthly bond with my dear wife of 16 years was severed on November 20th. The wisest, kindest, and most beautiful person in my life transitioned back to the Pleroma and is once again with her mother and father. Though we'll reside in different bhums (planes of existence) for a while, we will forever be oriented to each other--no matter the size of the chasm between us; like entangled particles floating through endlessness.
Olga Ahangarzadeh peacefully passed on in her sleep, with her husband by her side. The suffering, aches, and agony are no more. The anguish, distress, and sorrow has ceased. She can once again swim like the fish and walk like a gazelle. She's no longer confined to her ALS ravaged body and roams all dimensions as she pleases.
I hope she will keep an eye on me; be my guardian angel. I'm nervous about what the future holds but, confident that if I keep her voice in my mind and heart, everything's gonna be alright.
To most, Olga was a lifelong educator; highly-revered, well respected, and often envied. To the social circles of her youth, she was the heartbreaking bombshell that all the men wanted to get with and all of the women wanted to be like. Highly cultured, erudite, incisive, sharp, mysterious, protective of children, and intently justice-conscious.
To me, Olga was my confidante, my heart's desire, my companion, kindred spirit, lover, partner, and consort. She was my wife. My spouse. She was my other me.
They don't make 'em like Olga no more. She was a classic woman--well-balanced features, elegant, with impeccable style and fashion. She was a perfectionist, a negotiator, and a controller. She expected everything to be handled properly. And I LOVED it!
Though I'll be wading in the shallows for a while, I know the drip drip trickling of the water will snap me back into the Matrix sooner than later. For now, I think I'm going to hit the road (like Olga and I used to do), just to reassure myself that it is, in fact, all one. #advaita
After the diagnosis, we agreed that her life would be more than a struggle for breath; or a few extra rounds in a fight to the death. After the shock, the finality of the diagnosis set in and her final act was penned, we both agreed that from thence forth, our mission would be to love, be compassionate, and fill up our cup with grace: that we wouldn't view the rest of our lives together as a test of endurance.
But Olga had one more thing she needed to teach me. She taught me that I was capable of loving someone more intently and authentically than I'd imagined possible. She made me a better person.
"For love is the sabre, and love is the shield,
Love is the only true power we wield,
An eternal love is all ye should seek,
Before the last ship sets sail, so to speak..."
Her body ached all over, the week before she passed. Even the morphine wasn't helping. We made the mistake of not qualifying her for Medical Aid in Dyeing while she could still sip or move her hands. I ended up having to develop and build a device so that she could use with just the nod of her head. It was the most excruciating thing I'd done in my life to that point. Creating a machine for your wife to use in ending her own life is pretty heavy on the psyche (especially if you had a love like we had). Yes, we got it approved, but not before the medical provider sent lawyers to determine if the mechanism was legal. Two Social Workers, two independent M.D.s gave it their thumbs-up. Thankfully, the lawyers did too.
But in the end, Olga went in her sleep, lying next to me, peacefully. Maybe there's a lesson I needed to learn in going through all that. She always DID know what I needed to be the best version of myself.
A few things for cALS:
Voicebank
Get qualified for Medical Aid in Dying IMMIDIATELY (if you're in one of the states that allow it) because once you lose your ability to suck or move, you're out of luck.
Do not, UNDER ANY CIRCUMSTANCES, go ANYWHERE (e.g. MX, Korea, China, etc.) for special treatments--particularly ones that tout stem cell stuff. It's ALLLLL a scam.
Stem cell and pluripotent cell research, along with gene therapy is probably the sweet spot for making this monster manageable. Please DO NOT IMPEDE work in those fields (with your vote) based on superstitions and Bronze Age myths. Stay out of angry-town nut job land, where terrified and infuriated pALS and cALS go to blame the FDA or the ALS Association for the pain they're suffering because of the disease (especially when they SAY the groups are non-political, but slur the ALS Association by pointing out that a majority of their Board Members are Democrats). The ALS association is a fund-raising organization that spouts rhetoric in the name of bringing in more money to fund the many studies for treatment or a cure and YES, to pay their high-figure employees who BRING IN those donations. And the FDA is just trying to do what's right--by the nation; not by us.
If you're a spouse cALS (plus kids!@!@), all the therapy and love from friends and family will not prevent you from breaking down, snapping, and having a conniption. Don't take those signs to be meaningless. Fits of rage or hysteria, or bouts with sleep or hypervigilant stress means you're at your wit's end, Bubba. Don't cool down and then get started again. You've got to disconnect and reset COMPLETELY.
Ask for help. Take breaks. Get out of the house. Pamper yourself. Take long baths.
In-home care matters. If you can keep your spouse pALS at home, keep them at home. Honestly, there aren't any good options, lest you've got a hook up with a union that has that sort of stuff for its folks or can dish out up to $30k a month for a place to give care for your pALS. Some states have specific ALS Nursing Homes but most nursing homes that I've contacted don't have the personnel or capacity to take care of your pALS.
Handling Social Security and the insurance stuff sucks. But DON'T hand that off to a family member. That should be all in the spouse's hands.
Get the G-Tube ASAP.
Splurge on the wheelchair.
Finally, if you think you have ALS, BUY LIFE INSURANCE AND LONG-TERM CARE INSURANCE before your actual diagnosis. I know it's shady but you've got to fight ALS with EVERYTHING you can muster, even if you have to stretch your ethics, here and there. If you've got a good connection with the Neurologist you're working with, there's no reason why he/she couldn't tell you of his/her suspicion early on--before all the testing even gets started. It's a curse in so many ways that ALS isn't something that can be easily diagnosed. But with a little luck, you may be able to take advantage of the period between the start of symptoms to the first, two-MD, confirmed ALS dx.
I'm an immigrant that, thanks to the sacrifices of his parents, clawed his way into the middle class. Olga and I are highly educated, well-employed folks (and well-insured, too). But even after doing EVERYTHING right, we will have ended up spending some $140k on this damned disease. For most of us, that means goodbye savings, any vacations, college funds, additional large assets like a cabin or a boat that will need to be sold off for the cash, hopes/dreams of a brighter future...
ALS transformed me into a better person. It brought my wife and I closer than we even imagined possible. And it caused my wife and I to battle with mortality far too early in our lives.
She's now free. And in her name, I'll continue 'til we're once again united.
Don't worry, dear. I will find you.
Emil, your Olga sounds like a very beautiful person. Thank you for sharing your voyage together with the rest of us. She lives on in the depth of your kind spirit.
Hello Emil! How can I contact you? I just did DNA test via DNA ancestry. That says Olga was my closest relative (4th cousin). I wanted to contact her but find out sad news - she passed away. I would appreciate if we can connect and discuss any information she shared about her relatives