Hey, folks. Brace yourselves for a probably-too-candid and self-indulgent note from Jen today. Many of you aren’t active on Facebook or connected with me there so you may not see the slices of life that I share there on my personal profile (#CaregivingChronicles).
This month has been beyond hard, not just because of ALS, but unexpected losses (like my uncle passing on José’s birthday), the residual effects of the shockwaves sent through our island home from the Maui fires, and countless other hard things people we love and care about are facing but aren’t our stories to tell or share with you.
As I shared in a tribute to and remembrance of my uncle a couple of weeks ago, one of the biggest adjustments to living with ALS (for both me and José), is the inability to be there in the way we want to be when friends and family are going through hard things. As natural helpers and “do-ers” its the worst feeling in the world to feel helpless to pitch-in and be a support to people we love and care about.
AND, to always find ourselves asking for more.
But that’s where we are.
Since the beginning of the year, we hinted, then announced in July, and again last month that we need to hire caregiving support, but have taken little action to to so in large part because of the financial commitment.
It is so incredibly hard to ask for more.
Some of you may not know that I built a successful six-figure consultancy since leaving a faculty position at the University of Hawai‘i in 2012. I had my best year of revenue in 2021 and was poised to scale it significantly (while working less), when caregiving finally became too much to do it all.
Consequently, I made the decision to redesign my business and officially ‘retired’ my consulting services in June. Since April I’ve been in a coaching certification program, and have just launched my business coaching services while I complete the final exam and practice coaching hours over the next two months. The official graduation takes place in January when I hope to attend a celebration hosted by Hello 7—the company leading the certification—in Puerto Rico.
The goal is to scale my business back to a six-figure enterprise by the end of the year so that we have the financial means we started with at the time of José’s diagnosis so that we no longer have to lean on our support system in that way, despite the immense expense of living with ALS.
AND, so that if and when José is no longer able—or no longer wants—to continue to work (if you know his passion for broadcasting and his love for his team, you know the latter is unlikely to ever happen!), that his choice won’t be driven by our finances.
That’s a lot of privilege and ambition right there, but that’s the goal.
Our current GoFundMe stretch goal will cover hiring a caregiver to support us both with his care and daily needs into early 2024, provide me some precious time to rebuild my business, and do more to support José’s ability to stay in touch with all of you and be the ALS champion he desires to be while leading the tremendously talented team at Hawai‘i Public Radio.
Anything you can do to help us share our crowdfunding campaign and reach our goal will make all of this possible. There are some other possible fundraising efforts still percolating in the background and we’ll be sure to announce those as any details are finalized.
In the meantime, I’ll close this self-indulgent post by reprising a post I published to Facebook back in July.
[ originally posted to Facebook on July 31, 2023 ]
These days, life looks a lot different than our early years together filled with holiday staycations, foodie splurges, beach days, and planning our next travel adventure. Now, the simple act of leaving home is hard and has to be carefully planned.
Living in a space between the reality that no one has (yet) survived ALS, and the knowledge that people WILL, someday. But when? The psychological act of holding mental space for both hope and grief can be a real mindf*ck.
The irony is, that the days I feel most clear-headed, productive, and decisive, are the days that the smallest thing can render a knock-out. *POW* …and I’m literally on my knees, sobbing, and wondering if and how I can get through this. Am I strong enough?
This man is my everything.
I miss being able to sit together on the sofa, to walk down the street holding hands, have him hold and comfort me, fall asleep to him rubbing my feet, find unexpected love notes penned in his signature purple marker.
There’s a different kind of intimacy in caregiving.
I will (and do) take on pretty much anything he needs without hesitation and with no judgement. The growing dependency has taken a real toll on my body. Things I used to do with ease six months ago, now take more effort and often cause great physical pain.
Sharing these less-than-joyous slices of life makes some of our friends and family uncomfortable. It’s human to want to fix things and make everything better. ALS can’t be fixed. He won’t get better until new therapies are identified and made accessible. So if you want to DO something, learn what you can to be an advocate and take real action.
Trying to fix us isn’t helpful. There are choices we may make, things we choose to do a certain way, that work for us. Trust us. Please.
It’s exhausting to constantly feel the need to explain or justify decisions to provide comfort or protect other people’s feelings.
Sure, we don’t owe explanations to anyone. Easy to say, but the reality is that the questions and advice keep coming—and often from the people we care most deeply about. If we simply ignore the questions and double down on our decisions without explanation it can cause REAL hurt and jeopardize precious relationships and lines of support.
Because of all of this, caregiving takes most of ME these days; my time, energy, head space, emotions, thoughts, and body. Some days I don’t have the fortitude to endure the questions or uninvited advice. Some days I just need to be trusted, respected, and LOVED. Unconditionally.
So if you’ve been on the receiving end of me losing my cool recently, I’m sorry for any pain I’ve caused. But I’m not apologizing anymore for asserting myself and refusing to be disrespected. I’m not wasting any more time or energy protecting others at the expense of being able to take care of myself or be strong enough to care for my love with the mix of tenderness and tenacity that navigating the progression of ALS demands.
This is quite literally a fight for our lives. For José’s dignity and choice. For our marriage. And we’ve chosen to share our story in solidarity with everyone else living with this gawd awful disease. We need advocacy and action on many fronts—locally and nationally, from our healthcare systems, (lack of meaningful) caregiving support, ALS awareness and funding, and more. The work needed is monumental.
Thanks for reading and caring.
We love you. xoxo