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While many couples celebrating an anniversary post joyous messages and proclaim their excitement about the future on social media, I couldn’t bring myself to do the same when my husband, Todd, and I reached our 20th wedding anniversary a couple weeks ago.
It’s not because we don’t have a good marriage. We do. I just have complex feelings about reaching this milestone. We&#8217;ve lived the past 13 of those 20 years with Todd having <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, and life has become increasingly difficult in that time — for him because of severe disability, for me as his primary caregiver.
In the weeks leading up to our anniversary, I thought, “I hope he makes it.” And as the day approached, I told myself, “I hope he doesn’t die on the day.” I have these thoughts as we approach every family birthday and holiday. I don’t want those future celebrations to coincide with a death anniversary.
We couldn’t take an anniversary trip or go out for dinner, but we had a nice family dinner at home. I gave Todd chocolates and an ice-cream maker, and we made raspberry ice cream. Todd had ordered a silver plate engraved with our names and wedding date, and he had our daughter purchase 20 red roses along with other flowers and arrange them for me.
I thought about posting a picture of us on Facebook, but I didn&#8217;t feel emotionally prepared for congratulatory replies. I felt sad that I couldn’t write, “Looking forward to the next 20 years together.” Another 20 years of marriage is not going to happen, and the remaining years will be more difficult — if there are years. It&#8217;s touch-and-go as to whether we&#8217;ll even make it to 21. When the roses began to wilt, I hung them to dry, wondering if they’d be my last bouquet.
[recommended-reading id=86545]
<h3>A paradoxical existence</h3>
Todd’s ALS has progressed to the point where his lungs are severely affected. On many days, especially as long as he’s hooked up to his <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">noninvasive ventilator</a>, he seems OK. But a little too long off his <a href="https://www.youtube.com/watch?v=yrPq9DeubuI&amp;t=5s">assistive breathing device</a>, or after a day of exertion with a lot of talking, he struggles to breathe — leaving me to wonder if he’ll wake up in the morning.
Providing such intensive care has made us pretty much homebound. Todd is almost entirely so, except for a couple doctor appointments each year, and I only leave if I&#8217;m making a short run to town or have arranged for a <a href="https://alsnewstoday.com/columns/accepting-help-certified-nursing-assistant-caregiving/">caregiver</a>. <a href="https://alsnewstoday.com/living-with-als-2/">Life with ALS</a> is far from what we envisioned when we said “I do” two decades ago.
Yet I recognize that we&#8217;re fortunate in that we’ve already defied the odds. Having been a part of the <a href="https://alsnewstoday.com/forums">ALS community</a> for over a decade, I’ve witnessed many people lose their spouses when their <a href="https://alsnewstoday.com/columns/preparing-children-deal-grief-diagnosis-parenting/">children</a> were younger. They never got to celebrate 20 years of marriage, never got a chance to make the memories we have.
We thought that would be us after Todd’s <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a> and prognosis of two to five years, but here we are now, somehow, with a 14-year-old and a 17-year-old. Because I’ve lived the last decade with such stark reminders of life’s fragility, I have <a href="https://alsnewstoday.com/columns/clock-starts-ticking-after-diagnosis/">banked memories with fierce intention</a>.
And now I’ve found myself in this paradoxical existence of being both unlucky and lucky. It’s a feeling that’s difficult to express. I’m filled with gratitude for the life we’ve shared, while I can’t shake the undercurrent of grief that accompanies a disease as devastating as ALS. Reaching this milestone is a reminder of why I chose to name this column “<a href="https://alsnewstoday.com/joyful-sorrow-kristin-neva/">Joyful Sorrow</a>.”
<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.

Celebrating our 20th wedding anniversary is bittersweet with ALS

A family friend visited last week, prompting a trip down memory lane to the days long before my husband, Todd, had <a href="https://alsnewstoday.com/what-is-als/">ALS</a>.
My teenage <a href="https://alsnewstoday.com/columns/help-kids-cope-death/">daughter</a> and her boyfriend sat on the couch behind us, while Todd, our friend Abby, and I sat around the kitchen table sharing memories from two decades ago. All three of us were living in Milwaukee at the time and belonged to an early career group at the same church. We tried to recall the date of a kayaking trip we had taken.
“I’ll check &#8216;The Dating Report,&#8217;” I said, and went to retrieve it off a shelf in my office.
My daughter and her boyfriend took an interest in the conversation when I came back with a bound book that Todd had made chronicling our romance. We met in January 2002, started dating in April, and got engaged in December. As a Christmas gift, Todd compiled the emails we exchanged that year and included photos from some of our activities. I flipped through it, and there we were in our kayaking gear on June 14, 2002.
[recommended-reading id=85498]
<h3>A split-second decision</h3>
I read excerpts from the report, which reminded us of other stories. Five months after we started dating, Todd told me he loved me. &#8220;Thank you,&#8221; I replied, not yet ready to reciprocate the sentiment. I wasn&#8217;t ready to commit, which required at least a year of dating. Nonetheless, we began talking about getting married the following summer — hypothetically, if things worked out.
A month later, I was at a thrift store and saw a woman looking at a wedding dress. “That’s a Carolina Herrera — a $5,000 dress,” the shopper told her friend before moving on to the next aisle.
I took a look at the designer dress the woman had passed on. It was my size, so I took it to the fitting room and tried it on. It fit, but I was uncertain — not only about the dress, but also about <a href="https://alsnewstoday.com/columns/limits-marriage-being-als-caregiver/">marriage</a>.
When I left the fitting room, the woman approached me. “I was going to take that dress,” she said. Well, that’s not how thrift store shopping works. My competitive nature came out, and I held on to the dress.
“Are you getting married?” the woman asked. I had to give her an answer, so I made a decision on the spot. “I’m getting married next summer,” I declared.
That evening, I met Todd at his condo. “I bought a wedding dress today,” I said. “And I love you.”
Upon hearing the story, my daughter laughed and her boyfriend shook his head.
It’s fun to remember those days, to relive them with Abby, and to share them with our daughter and her boyfriend. Our daughter was only 4 years old when Todd was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed</a>, so she has few memories before ALS. Her boyfriend has only known Todd since he has been paralyzed, on <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">noninvasive ventilation</a>, and homebound.
At this stage of the disease, our daily life is mundane. It takes a long time to accomplish basic tasks of <a href="https://alsnewstoday.com/living-with-als-2/">daily living</a> such as <a href="https://www.youtube.com/watch?v=Ti23rAGdPR8">toileting</a>, dressing, eating, and showering. The present is difficult. We don’t look forward to a future with disease progression and eventual death. But there is joy in remembering the past.
We reminisced about our engagement story and how Todd had gotten the return date wrong for our honeymoon and we showed up at the airport a day after our plane had left.
At one point, Abby started recording Todd and me with her phone, so now I have 10 minutes of footage of us laughing and telling stories from our early days. It was a time filled with <a href="https://alsnewstoday.com/columns/sadness-joy-paradox/">joy and little sorrow</a>.
<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.

Reminiscing about our pre-ALS days brings joy

Before my husband, Todd, had <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, our marriage had a normal rhythm to it. He&#8217;d go to work, and I&#8217;d care for our small children, filling their days with activities. Todd and I would reconnect each evening, sharing updates on our respective days. We took our kids on walks and rode bikes. We went to the beach and the park, and we went on vacations. We got together weekly with a small group of other couples from our church, and we had people over for dinner.
After the <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a> and as the disease has progressed, we’ve had to say goodbye to many of those things we cherished. Todd had to quit working, and I became his caregiver. <a href="https://alsnewstoday.com/columns/help-kids-cope-death/">Our kids</a> are now teenagers and have their own activities. Todd is paralyzed and uses a noninvasive ventilator. He and I are at home together, all day, every day, and life can feel mundane. Todd sometimes counts the hours until bedtime because he&#8217;s so bored.
Because life will never again be what it used to be, we’ve had to find new ways to bring energy to our marriage. Following are three ways we do that.
[recommended-reading id=83155]
<h3>1. We watch shows together.</h3>
We watch movies and documentaries on the weekends, but TV shows are short and easy to work into our daily routine. We’ve watched all of &#8220;The Office&#8221; and &#8220;Monk.&#8221; &#8220;Frasier&#8221; kept us busy for over a year because it ran for 11 seasons. We’ve since had trouble finding anything we liked, but last weekend we added <a href="https://www.discoveryplus.com/" rel="nofollow">a new streaming service</a> that&#8217;s given us access to many old seasons of HGTV shows, such as &#8220;House Hunters International.&#8221; It’s fun to vicariously explore new places in other countries, although sometimes a little bittersweet.
<h3>2. We compete at The New York Times&#8217; daily Wordle.</h3>
This popular <a href="https://www.nytimes.com/games/wordle/index.html">online puzzle</a> allows six attempts to guess a five-letter word. When a word is played, the letters change color to indicate which ones are in the final answer.
Todd was an analyst in his professional career, so he used his <a href="https://www.youtube.com/watch?v=v2wuJPV3--E">HeadMouse</a> to create an Excel tool with a list of every five-letter word in the English language and filters to include or eliminate letters. He doesn’t use that tool when we compete, but he checks to see how well we played. And he used it to analyze the best words to play.
He used to almost always beat me, so I started playing the same first two words that he typically plays. The other day over breakfast, I told him that Wordle was disappointing.
He said, “Hmm,” and I said no more, holding back a smile as I realized my comment might be influencing his course of play.
Later, after I got him set up on his computer, he shared that he got the Wordle in five tries.
“I got it in three!” It’s a rare day when I get the answer in fewer turns than he does.
He hadn’t played his usual first two words. “You said it was disappointing.”
“Yeah, because it was too easy!”
<h3>3. We visit with other couples.</h3>
For a while, Todd’s lungs didn’t function well enough to carry on much of a conversation. But now that he’s progressed further and requires noninvasive ventilation, he’s found that <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">he doesn’t get winded</a> when he talks with the <a href="https://www.youtube.com/watch?v=yrPq9DeubuI">Astral ventilator</a> on. So it doesn’t add to the stress of our lives, we usually get takeout.
We connect well with the couple who visited us last weekend. They deal with <a href="https://alsnewstoday.com/columns/suffering-connects-compassion/">difficult things in their life, too</a>, although they&#8217;re very different from our problems. We don’t spend time dwelling on that, however, and we have broad-ranging conversations.
Our friend, who&#8217;s an instructor at our local college, discussed her excitement for her upcoming lecture on &#8220;Moby-Dick.&#8221; She loves Herman Melville’s novel, but has had trouble finding others who share her passion.
“I’ve read it,” Todd said. After he stopped working due to ALS, Todd frequently visited my great-uncle in a nursing home to read to him during his final months. “He passed away halfway through &#8216;Moby-Dick,&#8217; so after that, I skipped the whole whaling section and read the end,” Todd said. It was fun to hear he and our friend discuss the beauty they found in the classic novel.
Although our life is not what we imagined, we&#8217;re still finding ways to connect and enjoy our time together.
<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: marriage

Celebrating our 20th wedding anniversary is bittersweet with ALS

Reminiscing about our pre-ALS days brings joy

3 ways we bring energy to our marriage while living with ALS