Three days before that, I read parts of this tribute I wrote to her. It was my second-from-last visit to her in the hospital — the last time I saw her awake and talked with her. I feel so blessed to have had the chance to tell her how much she has meant to me — and how much I will miss her. I later contributed the obituary that was posted on the funeral home website — and it had a lot of Sue’s amazing accomplishments. The tribute below is much more personal.

Today, on Easter, a day of joy, I am hoping Sue is finding all she hoped and believed in sitting at the table with the best of Easter company.

My Christmas cactus has never bloomed at this time of the year. It bloomed beautifully a couple of months ago. But inexplicably, this bud formed three weeks ago, when I found out Sue was dying. Every day since her death, I’ve watched this bloom, somehow knowing that it would open, right on Easter. And here it is, opening — literally — before my eyes.

I’m not the kind of person who sees signs in things — but this flower … this is telling me Sue is beside me and all of us who love her today.

I miss you dearly, my friend. Happy Easter.

SueLang

Written April 1, 2019, four days before Sue’s death, and read (in part) to her on April 2.

SueLang. The only person I know whose first and last name go together like … two sides of a coin, like a bow and arrow, like peanut butter and jelly.

Definition of a SueLang: Cherished, lifelong friend.

Sue is one of THE friends. You know, that small, elite group of people who stay with you your entire life and things never change, even if you don’t see each other for months or even a year? That friend who loves you for who you were at 12, and still loves you 45 years later? She’s THAT. Her place in my life was cemented by high school summertime trips to the drive-in (hiding in the trunk), singing silly songs sang to the Brady Bunch tune (“Here’s the story … of the Warren Woods Warriors”), playing pranks at summer basketball camp and sitting in her Warren bedroom and building a “gross kit” for a friend that included dead skin and clipped toenails. And still laughing about all of it 40 years later.

Our friendship was built with such great moorings that it weathered colleges and jobs in different states and countless years when I was a single mom without much time for anything besides work and parenthood.

I, Sue and two other friends, Pat and Renee, would meet up a few times a year and sit for hours catching up. After a few years, Sue’s best friend, Janice, joined our gatherings and four became five. We always had so much to catch up on. But it ALWAYS felt like coming home when we were together.

Some things just don’t change. Friendships like ours don’t change. If we failed to meet up as often, we’d always have next time.  Right?

But none of us thought to factor in fate. Sickness. Terminal illness.

Damn it. We were supposed to go on doing this for another 30 years! Little old ladies exchanging stories and reliving the moments seared in our memories.

When we were in high school, the same group of us that got into loads of shenanigans. We played on the basketball team and were all on the track team. We excelled in school academically, but it was after the bell when we made teen memories together. School dances and the pre-dance trip to the party store (Hey, you, can you buy us some beer?). Fartlecks and disobeying the track coach (later to be Renee’s hubby) and taking our “training run” to Tech Plaza to visit the Easter Bunny. Summer basketball camps. Working together on the Jargon, the school paper, where Sue’s writing was a witty and fun as she was. Trading quips in Shakespeare class, and 40 years later using the same Shakespeare quotes in a game called Bards Against Profanity. The last time we sat around a table together this past February – and we laughed at Shakespeare’s bawdy humor all over again.

Back then, on our post-basketball fast-food forays after playing rival Tower, we’d make a point of driving to the McDonald’s we knew our Tower rivals frequented and then scream “Dolly D!!!” out the window at the one incredibly well-endowed point guard who happened to be very talented (and thus more hated). Then we’d all sing “She’s a BRICK … HOUUUUSSSE.”

Sue’s best friend, Janice, was a year ahead of us in school, and didn’t share our sports focus or our adolescent silliness. Truly, she was years beyond us back then. But once we graduated from college and all matured a bit, she melded into our group as well, and the foursome became five when we all gathered every few months. For several years, we went a year between visits – and always vowed to be better. Life gets in the way.

Damn it, why did we let it get in the way?

We should have known better.

Sue … dear funny, brilliant, kind, wonderful Sue.

Sue’s gift has always been a sense of humor that involves a droll, quiet delivery of funny takes on everyday life. She brings her own experiences and observations to life with just the right words, delivered in an impassioned, just slightly-exasperated but soft-spoken way. It is hard not to smile the whole time Sue talks. Because she’s just so damn entertaining. 

Through the years, it was always fun to hear about Sue’s off-beat hobbies. For years, she was a “storm chaser,” and would tell us stories of chasing storms and tornadoes across swaths of the Midwest. She also actively pursued Big Foot. The only person I’ve ever known to track Big Foot.

For a couple of years, I was lucky enough to work with Sue in the same company, a startup website for people with disabilities. Sue brilliantly assembled a channel meant to help people with disabilities to drive. I was so blessed to have such time – the only time since high school when we saw each other on a daily basis. But Sue’s calling was a different one – and she left  after a few months to do what she was meant to do, becoming a radiological physicist. 

Sue told us all early in January that she’d been diagnosed with lung cancer. When we gathered as a group in mid-January, she was optimistic, feeling better, eating well and experiencing hope. We laughed, shared stories, and although the gravity of the situation wasn’t lost on any of us, we were ourselves, and had such fun. We planned to gather frequently, vowing to meet again in weeks.

At the end of January, we met for an afternoon of games and laughter and food. Priceless time. Memories I’ll cherish.

I realize I am not the first person to face losing a good friend.

But to lose Sue feels like losing a limb. She was a part of my youth, a part of my life before I even had any idea what my life would be. Like my fingerprint, she’s uniquely part of me.  

Sue’s faith has always been strong. I believe God’s presence is helping her to accept what is happening and her belief in life after death is real and comforting.

Still. I know she wishes she had more time. I wish I had more time WITH her. I will never be able to say all that I want to say, even here, in words on paper, where I am most comfortable.  My own heart beats for me as a sign of my lifeblood. But as death approaches for my friend, I only feel my heart in a suffocating squeeze of hurt, sadness and loss.

Oh, how I will miss you, my friend.

We’ll see you in heaven, and I’ll challenge you to a one-on-one. I know I’ll lose … but that’s OK. It’s all in the cards.

Aunt Del was so genuine, so kind, so soft-spoken. And this request was so simple.

“Yes!” I said. “Absolutely. Yes, I will.”

And I meant it.

That was March 16, 2018, the day when I sat next to Aunt Del, someone who has always meant “family” to me in the deepest sense of the word. It was the luncheon after the funeral for Uncle Bernie, my dad’s oldest brother. Aunt Del had read my Facebook post about Uncle Bernie, and remarked at how touched she was by my words.

That’s when she looked at me and – in all sincerity – asked if I’d write about her that way, too.

And I nearly cried. “Yes!” I told her.

And I INTENDED to do it.

And now she’s gone.

 I love to write – it allows me to pour my feelings and my soul out. It’s always been so for me. And it made my heart soar that words written from so deep could mean so much that they could bring comfort or joy to people I care about.  

But I also realized at that moment that my words have been too, too late. Words written after someone dies may bring comfort to me and sometimes to loved ones. But they will never, ever be heard or read by the very people who’ve inspired me to write them.

UNLESS … I choose to remember

So Aunt Del, I am so very sorry I didn’t do this 11 months ago when you planted this seed. I am so sorry that I couldn’t read these words to you while you were still here to appreciate them, and while you were still here to know how much you meant to me. I’m sorry I sat at your funeral mass today, regretting I hadn’t done this sooner.

From here, I hope to do better: I’d like to remember as many people as I can with words they can read NOW, while they are still here with me.   I hold all of you in my heart, and the words that bubble up each time I think of you should not be pushed back down only to see light after you are gone.  

So, here goes. I CHOOSE to remember you.

Aunt Del

Aunt Del, I will always remember your kind, kind face and soft voice. You always had this serenity about you, a gentleness that I see so much in all your own kids and their kids. There was always something so CALMING about being near you.

For most of my life, that softness and serenity seemed cloaked in happiness – joy at life with the man you loved and the family who surrounded you. It was so hard to see the raw pain you experienced after Uncle Tom’s death a few years ago. He was your other half, yes. But he was more than that. There are some people who complement one another in marriage; you and Uncle Tom COMPLETED one another.

For most of my life, you and Uncle Tom were inseparable. I know people say this about some married couples, but for the two of you I think you genuinely were two halves of a whole. It’s as if when you met, your souls merged and you melded into Tom&Del. Even when I was little, I remember you sitting close, hand-in-hand, Uncle Tom calling you sweet things. And when he died, I have to believe a part of you did, too. Because how could it be otherwise? Your love was so clear and complete.

Do you know what a wonderful example the two of you set for all of us?

You also found so much joy in being a mother, a grandma and a great-grandma. Your voice would rise and quicken when you talked about your great-grandkids. Did you realize that? It’s as if when you said their names your heart grew. You loved those precious kids!

I didn’t realize how much you enjoyed gardening. But I have learned in the past few weeks that you loved your flowers and tended to them the way you tended to your loved ones – with gentle care. It makes me wonder what else I didn’t know about you. I tend to freeze-frame around those years when I saw you every Sunday at Grandma’s house. I’m afraid there’s much I’ve missed.

What I do know is that for my entire childhood you – along with Uncle Tom; Uncle Bernie & Aunt Bev; Uncle Bob and Aunt Barb; and my parents – formed a cocoon for all of us cousins and our kids. I’d look at all of you and say, each time we’d get together, how very lucky I felt to have such a loving and wonderful family. How you all set wonderful examples of parenthood and respect and love.

Just as you tended your flowers, you tended your family garden. The roots of the family tree you and Uncle Tom planted are strong. The branches are hearty. Each child – each blossom – is unique and beautiful and a reflection of you – the gentle gardener, the soft-spoken mother, the cherished Aunt Del.

Aunt Del, I will always remember you.

I was walking through Costco a few days ago when I spotted the mother and sister of the woman who changed my life, the course of my career and my awareness of disability issues. I had been struggling with how to write about Monday’s 20th anniversary of the Americans With Disabilities Act, and so their unexpected appearance was truly a gift.

Karen Van Arnem and her daughter, Heather, lived and shared in the vision of Heidi Van Arnem. Heidi became my boss, friend and hero 11 years ago when she asked me to help build her vision into iCan.com, which became one of the most recognized and respected disability websites in the world as websites are used for everything now days, from working on companies to game in sites like olympic kingsway casinos online. Heidi helped me to see that key to forming an online community is becoming part of that community. I have carried that knowledge with me into everything else I have done as a journalist and a member of many different communities. Heidi died in 2001, but her spirit lives on in me and in all who became part of the iCan community across the state and country and throughout the world.

iCan did 10 years ago what many organizations are just discovering today. We created connections through information, resources and most importantly conversations. By making those connections, we made a difference, learn more at the link.

How appropriate that as I struggled to capture my thoughts this week, the two people who were closest to Heidi appeared in my life again, providing inspiration. It brought back a flood of memories and a renewed sense of purpose. I came home, dug out the remnants of iCan.com’s 10th anniversary coverage of the ADA and started thinking about what Heidi would say about the progress and in many ways lack thereof since her fight for disability rights ended with her death in November 2001. She would not have been satisfied. Then again, she never was. It is what made her a great visionary and an incredible role model, as disability is something many people have including children, so for them having a place to play is important and the use of resources from www.softplaymanufacturers.co.uk/how-to-plan-for-a-soft-play-for-children-with-disabilities can help creating the right playground for them.

The 10th anniversary ADA Torch Relay was the spark that truly started the iCan flame.

The family of people who worked and believed in Heidi’s vision took a cross-country journey 10 years ago this summer, following the ADA torch through 24 states. I visited Chicago and Washington and met hundreds of people in those two cities alone. iCan staffers reported from all of the cities, capturing photos, writing profiles and relating stories about Austins accessible transportation, Atlanta’s Shepherd Center, Chicago’s Mayors Office for People with Disabilities and St. Louis amazing Max and Colleen Starkloff, who founded Paraquad, and now run the Starkloff Disability Institute.

Heidi’s life ended too early, but the work she did lives on as does the work done by many of those people we met 10 years ago. Here are some of them:

Mark Johnson: The director of advocacy at the Shepherd Center in Atlanta continues to do the work he did 10 years ago, when he was one of the Atlanta organizers of the torch relay. Johnsons passion and dedication continue to shine. In 2009, he was named 2009 Healthcare Hero by Georgia Trend magazine and has been inducted into the National Spinal Cord Injury Association Hall of Fame.

Tom Harkin: The Iowa senator was the chief sponsor of the ADA in the U.S. Senate. He continues to be a strong advocate, and marks this 20th anniversary with stops in Des Moines and Iowa City. Harkin, who when he spoke about the ADA on the floor of the Senate 20 years ago did so all in sign language, said this week that the ADA brought everyone in the country into the circle and made America much more complete.

Justin Dart: Known as the father of the ADA, this pioneer in disability rights died in 2002, about seven months after Heidi Van Arnem died. His memory and his contributions live on in a giant puppet created by the Matrix Theater of Michigan that is making its way across the country as part of the 20th anniversary celebration.

Greg Smith: The founder and host of the nationally syndicated On a Roll radio talk show for 14 years, Smith was the lead torchbearer in the 10th anniversary ADA relay. Now a motivational speaker and The Strength Coach, Smith is one of dozens of people across the country who became true partners with iCan. It is wonderful to see him continue his work.

And closer to home:

Mac Brantley and the iCan team: Mac was one of a team of content producers for iCan and provided a crucial focus on advocacy for our editorial team. He continues his disability advocacy efforts by blogging in the detnews.com Disability Blog. He recruited a team of former iCanners to write this week. With us in spirit will be Bethany Broadwell, who along with Heidi was the true heart of iCan. Bethany died Sept. 16 at age 36. Some of her writing lives on at BethanyB.net.

A.J. Filippis: Anthony Filippis Jr. carries on the work his late father, Anthony Filippis, started when he founded Wright & Filippis in 1944. Tony Filippis Sr. was a tireless advocate for people with disabilities, creating the Athletes with Disabilities Hall of Fame in 1999. In addition to serving as president of the Hall of Fame, Filippis Jr. has taken on a leadership role in supporting disability advocacy efforts in the state.

Duncan Wyeth: The executive director of Michigans Commission on Disability Concerns, Wyeth has been on the forefront of disability concerns in Michigan for more than 30 years, active in the U.S. Olympic Committee and the United Cerebral Palsy Association.

There are so many more people those we met and profiled along the way 10 years ago. Many have taken on new challenges. All showed me, 10 years ago, the power of community and the importance of the ADA. In the past 10 years, I imagine there have been hundreds of others we might have profiled in another torch relay in honor of the 20th anniversary. May each continue to carry the torch within their own lives and communities.

And in Heidi’s honor, that all continue to say I can.