A SUPER-powered WP Engine Atlas Test Site

Joe&#039;s Atlas Experimentation Site

Last week, I set my husband, Todd, up on his computer before heading out for my weekly ukulele group. It’s difficult to leave my husband for long, because he&#8217;s paralyzed by his <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. But my class lasts only an hour and I&#8217;d be less than 10 minutes away. In an emergency, he could call or text and I’d rush home. His <a href="https://www.youtube.com/watch?v=CGfi18xZ5Xk&amp;t=134s">Google Pixel phone is paired</a> to his computer, and he controls his computer using a <a href="https://www.youtube.com/watch?v=v2wuJPV3--E">HeadMouse</a>.
I asked him if he’d mind watching a webinar on college financial aid while I was gone. The Zoom meeting would be starting just as the <a href="https://www.keweenawreport.com/news/local-news/ukulele-players-now-have-their-own-local-group-yooper-leles/" rel="nofollow">Yooper-leles</a> were wrapping up our practice session.
When I returned home, I could hear Todd whistling from his office — not a tune, but rather an alert, as he sometimes does if I’m unable to hear him.
“Just a minute,” I called back to him, but he whistled again.
I ran to his office, and Todd looked to be in distress.
“Turn it off. Turn it off.”
I didn’t understand what he was asking me to do.
“Turn off the computer. Just press the button to turn it off.”
I shut down his computer, and he said, “I’m never getting on a Zoom call again. I swear.”
He asked me to put his noninvasive ventilator on the “sick” program, which pushes more air into his lungs than the typical setting he uses during the day. After he caught his breath, he explained what had happened.
[recommended-reading id=83803]
When he joined the Zoom call, his cursor froze, and he wasn’t able to control his computer. He began to panic, and he almost entirely <a href="https://alsnewstoday.com/columns/preparing-respiratory-emergency/">lost his tidal volume</a> trying to call me with his Echo Show device in the other room. Normally he can use that to call my phone when he&#8217;s in bed, but the webinar had begun and the speaker was talking continuously. Alexa was not responding.
Todd’s heart rate spiked, and he tried to calm himself by breathing slowly. By the time I got home 15 minutes later, he was in a cold sweat, and his heart rate was still high. But by that point, he was able to whistle when I entered the house.
I pulled a stool up next to him and held his hand as he let the ventilator refill his lungs. Eventually, he asked me to restart his computer, and we tried to join the Zoom meeting again just to see if it was a fluke. There was no issue the second time, so he figured his computer had just crashed.
“I now realize how dependent I am on my ability to <a href="https://alsnewstoday.com/aids-and-adaptations/#Communication_aids">communicate</a> to keep me calm,” Todd said.
My husband usually takes his ALS in stride. I&#8217;m the one in the relationship who&#8217;s more of an emotional mess. Todd doesn’t talk much about his feelings, but on the rare occasion when he does express vulnerability, I feel a swell of compassion rise up in my heart.
Sharing our vulnerability opens our hearts to each other.
<h3>Finding healing</h3>
A few days later, I was chatting on the phone with a friend, and we were discussing the challenges of marriage. When I tentatively expressed my sadness over the losses in my marriage, she asked me if I had grieved them.
“I grieve often,” I said, “but usually in my journal, or <a href="https://alsnewstoday.com/columns/long-term-grief-wolf-like/">I cry by myself</a>.”
I’m cautious about burdening my friends, so I usually call only when I feel sufficiently cheerful. After all, who wants to be friends with someone who is perpetually mired in grief? But on this day, I shared my grief, and she cried with me.
There&#8217;s something healing about having our grief witnessed.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Sharing our vulnerability opens our hearts to one another

Like many in the <a href="https://alsnewstoday.com/forums">ALS community</a>, I was saddened to learn of the recent death of <a href="https://www.today.com/health/news/sandra-bullock-bryan-randall-als-disease-rcna98745">Bryan Randall</a>, a photographer and the partner of actor <a href="https://people.com/sandra-bullock-called-bryan-randall-love-of-my-life-while-he-battled-als-7571303">Sandra Bullock</a>. I respected that his loved ones honored his request to keep his <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a> private throughout the course of his disease. I imagine it was challenging to do so, given that his partner was in the public eye.
Every individual and family affected by <a href="https://alsnewstoday.com/what-is-als/">ALS</a> has difficult decisions to make regarding what information to share, when to share it, and with whom.
For people <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>, there are no wrong answers. I admire those who have used their platform to raise awareness and share about a lesser-known and underfunded disease. At the same time, I have equal regard for those who keep their journey completely private. Living with ALS is challenging enough without feeling the pressure of sharing with others.
Deciding how and what to share was an early consideration for my late husband, Jeff, and me upon his ALS diagnosis in October 2018. Jeff was a reserved person, quiet and thoughtful, and for the most part, he was private.
It was through this lens that he considered whether and how to share news of his diagnosis, and when to do it. We discovered during those difficult early days, and over the 19 months that he lived with ALS, that sharing his journey was fluid and iterative, evolving as the disease progressed.
[recommended-reading id=85744]
<h3>How we communicated Jeff&#8217;s diagnosis</h3>
When he was diagnosed, Jeff’s first priority was sharing the news with his adult daughter and son, and then with the rest of his family. We’d kept them all apprised of his concerning <a href="https://alsnewstoday.com/symptoms-of-als/">symptoms</a> and the battery of tests he was undergoing to determine their cause. When we heard the words “it is ALS,” I believe that among Jeff’s first thoughts was letting his kids know. The three of them were exceptionally close, and he wanted to reassure them, to let them know he was going to live each day as best he could.
The <a href="https://alsnewstoday.com/next-steps-after-als-diagnosis/">first few months</a> that Jeff lived with ALS, we shared the news one-on-one with family and friends, and largely in person when we could. He and I were both still in shock and grieving, so sharing the news sometimes felt like reliving the diagnosis all over again. Our loved ones were understandably sad and shocked, and this was hard for us, too.
In January, three months after his diagnosis, Jeff decided he was ready to go more public with the news. He and I both used social media to connect with family, friends, and colleagues, so we decided that this would be an effective way to communicate going forward. We wrote a post together that shared the news and, more importantly, his feelings about it. In the post, Jeff noted his commitment to living each day, subtly setting the tone for what he wanted: acceptance, positivity, and no pity, with the last being most important for him.
Around the same time, we set up a private “Team Jeff” group on social media where we shared more personal and private updates, including news of his medical appointments and our victories and setbacks. We shared pictures of visits with friends, funny stories, and details of things he, or we, struggled with. Creating this group helped us manage the communication around his illness, demystify the disease, and let people know we were OK to talk about it. For us, the group provided support, humor, and a means to share honestly.
Jeff and I overtly lived by two tenets when it came to communication: one, that every message, even if I wrote it, was approved by him, and two, that we&#8217;d be honest — no sugarcoating, but no dramatizing, either. We wanted to be completely upfront once we did decide to share a piece of information.
I had a third, private tenet that I didn’t share with Jeff, which was that any details of his care and disease would uphold his ever-present dignity, which was core to who he was both before and during ALS. I would always ask before posting a picture and always seek his opinion when I felt like we needed to share some news.
The path of sharing was the right one for him and for us. What I’ve concluded, however, is that each person has the intrinsic right to reveal, or keep entirely private, their journey with ALS — and also to change their mind along the way. Whether in the public eye or a private citizen, no one has the responsibility or obligation to share.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Tag: sharing

Sharing our vulnerability opens our hearts to one another

Deciding when and what to share after a diagnosis of ALS