Sharing SMA advocate’s end-of-life discussions is 1 last gift

Kevin: I love it — you’ve beat me. So I was telling friends it’s my 17th, and, like, some of them were astounded. I was like, yep, I’ve been here since I was a little toddler. It’s grown exponentially over the years, but always a pleasure to be here.

Well, Dr. Al, before we get into what we’re talking about today, can you introduce yourself a little bit and what you do?

Dr. Al: Sure. My name is Al Freedman. I — well, first, I’m a dad. My son Jack was diagnosed with SMA 30 years ago in 1995 with type 1 and given one year to live in 1995. Thankfully, Jack lived to 26 years. He passed away in October of 2021. I was very, very lucky to be his dad for so long, and he’s still right here on my shoulder as I’m here with you doing what he does, which is keeping Dad honest.

I’m also a psychologist, Kevin, as you know, and I specialize in supporting the needs of patients and families affected by SMA and many other rare diseases all over the country.

SMA is my home territory, and that’s why I call it our family reunion. So I’m a dad and I’m a counseling professional, and I feel very privileged to do the work I do to support families like yours and mine.

Kevin: Absolutely. And we’re very grateful for the work you do. You’re a very treasured member of our community. And so the reason we’re talking today is, as listeners, viewers, and subscribers to SMA News Today have likely heard, our really good friend, coworker, and colleague Michael Morale passed away a few weeks ago.

He was a treasured member of SMA News Today and Bionews, our parent company. He made a huge impact on our community. And if anyone read the ‘In Memoriam’ that I wrote about Michael a couple of weeks ago, I mentioned in there that Michael — he did know he was nearing the end. He was getting palliative care.

He didn’t know when his time would come, but he knew he was in the end stages of life, and he was actually able to have several conversations with Dr. Al before he passed away about confronting end of life and what that means as someone with SMA. He really wanted to give some encouragement to others in the community, especially when you’re faced with that prognosis and you know what’s coming.

I want to say here that he gave us consent before he passed, that if anything were to happen, these conversations that he had with Dr. Al, he’s perfectly OK with us discussing. So, Doctor, I wanted to ask you — I know you had a couple of conversations with him. Can you tell us what those were like and what topics you discussed with Michael?

Dr. Al: I knew Michael for the last two weeks of his life, and you knew him much longer and much better than I did. Michael was invited to meet with me because he wanted to educate the community on the end-of-life experience.

My conversations with Michael as a member of the SMA community felt different to me, because we’ve lost a lot of friends — babies, kids, adults — over all these years. But most commonly, people with SMA pass abruptly. And, although my son was expected to live to the age of 2, he lived to 26, and we all live with a lot of uncertainty.

But my son passed very abruptly due to a medical episode, and the majority of people with SMA pass abruptly. And the first thing that was different for me was that Michael lived to — I forget exactly —

Kevin: He was going to be 60 in August of this year.

Dr. Al: Which is extraordinary for SMA. He lived a good, long life, and that’s what he wanted people to know. But what made his situation different right away on the face of it was that he had conversations with doctors who were telling him that his body was wearing out, essentially.

So, he didn’t pass from a medical episode like so many of us in the community do, like my son. He passed because his body wore out. He knew his body was wearing down, and his doctors knew his body was wearing out.

So that was the first thing that struck me is we don’t often have the opportunity to learn from our friends in the SMA community who have the luxury, so to speak, of preparing in the way he did.

The second thing that was extraordinary about Michael was his desire to teach others about the end-of-life experience. That was the reason he was meeting with me. Like all of us in the SMA community, we want to help each other.

We all do what we can to help each other. Michael, at the end of his life, wanted to help other members of our community by saying that he was at peace, by talking positively about his life.

What was really extraordinary to me is that Michael was talking positively about his end-of-life experience. That was extraordinary. In our community, as you know, Kevin, it’s extraordinary in the sense that we all face adversity, and I see so much grace and dignity in our community and so many other rare disease communities every day. But this guy Michael took it to another level by being positive about the fact that he was dying, essentially.

He talked about his hospice team, he talked how kind they were, how compassionate they were, how they were teaching him and preparing him for his passing. And he wanted everybody to know that he was at peace. He felt supported, and he wanted everybody to know. He said to me, ‘Dr. Al, I don’t want everybody to be scared when they find themselves in my situation. I’m not scared. I’m at peace because my life has been meaningful.

I’ve had meaningful work and meaningful relationships. And now I have a team of people who are teaching me and helping me. And I’m not scared.’

So I felt so privileged to get to know him, even for those last couple of weeks of his life. I had hoped to meet him and hoped to have more in-depth conversations with him, and then he did pass just less than 48 hours after the last conversation I had with him. So I am honored to pass on what he shared with me to the community.

Yesterday, I went to, here at the Cure SMA conference, we had a couple of sessions for families who’ve lost a family member — parents who’ve lost a child like me. There were 12 or 14 folks in the room. It’s one of the few times Dr. Al doesn’t have to be the facilitator.

So it was a real luxury for me to be a dad. But I thought about my son Jack and honored him by being there. But I also took a few moments because of my conversations with Michael so recently — I kind of brought Michael with me, and Jack, into that session, and it felt peaceful for me to be able to do that.

I so appreciate having had the opportunity to meet Michael and so appreciate what you all do at Bionews and the fact that he was such an important part of the team. I feel just fortunate to have had even those few conversations with him.

Kevin: As someone who knew Michael for seven years, I was only at Bionews about a year at that point and I was just kind of searching online for different community members and vloggers. I came across his personal YouTube channel and he impressed me and my bosses right away with just his raw storytelling and humor and everything. And so I contacted him right away.

Everything you’re saying about him as far as, even though you only got to know him for a couple of weeks, he makes such an impact on everyone. Whether you know him for years or days or months or whatever, his personality came across in every conversation. He was very much not one for small talk, not one for casual relationships. He really invested.

I said this in his ‘In Memoriam,’ that often, we would have regular conversations that weren’t even work related. We worked hand in hand for a while, and then he switched positions in the last couple of years to be on one of our teams to build relationships with nonprofits or organizations. I’ve been on the content editorial side my whole time at Bionews. So even when we stopped working hand in hand with each other, we still caught up regularly.

While I didn’t get to talk with him in the last couple of weeks, I’m really grateful that my last conversation with him was a normal catch-up. He was smiling. He was happy. And despite everything he had been through — particularly in the last year with a myriad of health issues — he was still the same selfless individual, wanting to know more about others than himself.

Dr. Al: You’re reminding me on that note, about others before self. He’s the real deal, this guy. I didn’t know him long, but when I first called him, and I was thinking so much about the experience he was having — having heard about his medical fragility at that point — the first thing he said to me was, “Dr. Al, I so appreciate you calling me. And I’m so sorry that you lost your son.”

As he was finishing his life, he was first focused on my experience as a dad. That says a lot about a person. I didn’t know him well. I also just want to thank you, Kevin, for acknowledging that Michael not only gave consent — I’m a psychologist, so this is very unusual. I do my work usually behind closed doors, and it’s all confidential.

But Michael made a point to say, “Dr. Al, I want — not only don’t I want you to keep our conversations confidential — I want you to broadcast what I tell you so that others can benefit from the experience that I’m having, because it’s unusual. And I really want people not to be scared.”

He was focused on not himself. He was focused on others and supporting others in the community. I so appreciated the time I had with him.

Kevin: Absolutely. Yeah, he was not one to really keep much of anything private. I mean, he worked at Exxon Mobil for decades. And then when he retired, he started making a YouTube channel.

And that’s how we found him. All the years he was at Bionews — between making his YouTube videos for us, being on a podcast with me, and doing other work — he was very open about his personal story and really did not keep much private.

He wanted to, like you said, be that encouragement for others, and encourage others to not — you know, death and topics like this are, for a lot of people, more taboo. People are afraid to talk about it. And I get it. They can be hard to talk about. But I think for him, like you said, he was at peace with it. He had lived a great life, recognized that his time was coming, and yes, he absolutely wanted to put it out there.

He wanted to help others be less afraid and be open to discussing these matters. Because it is the reality that, in the SMA community, often we’re going to be faced with death and medical issues much sooner than a lot of people. And, it’s something, as hard as it is, we kind of have to talk about it.

I know you guys were going to, before he passed, go into producing a series of podcasts about this subject. So obviously that didn’t get to happen, but that’s why we wanted to discuss the conversations that he had with you. I know he was going to do kind of a miniseries of podcasts about end of life and preparing for it — and the intersection of that with SMA.

Dr. Al: All of us, each and every one of us, with or without SMA — we all live, and we all are going to die. It’s hard to talk about. It’s awkward to talk about. So it’s often not talked about.

As a psychologist, it’s part of my day-to-day work with families around the world who are affected by rare disease. So those conversations with Michael were a gift to me and a gift to the community. I’m just glad to have had the opportunity to get to know him a little bit.

Kevin: Absolutely. And I do think the beauty of what Michael did — and we also lost another longtime contributor to SMA News Today earlier this year, DeAnn Runge — it’s been a hard year for us, having to lose both of those individuals we love so dearly back to back.

But I think the beauty of it is, both of them were very outspoken about their stories and made hundreds of YouTube videos for our channel over the years. So the beauty is that those videos aren’t going anywhere. Their stories will go on and I think will continue to make an impact on people in the years to come.

That is what I love about what I do. It’s a constant reminder that we are doing really incredible work here — getting the documented stories of people in the SMA community and in other disability communities.

I am really grateful that their stories will go on. You can find hundreds of hours of podcasts and videos with Michael and DeAnn if you ever want to, and I do encourage you to, because I think we can still learn from them even though they’re no longer with us.

Dr. Al: Thank you, Kevin, for the work you do for the community. I consider it a real honor to be a small part of supporting your work and your colleagues’ work.

Kevin: Oh, thank you. I really appreciate it. You are a treasured member of our community, and we are grateful. Likewise, Jack continues to make an impact here. So I want to thank you for this conversation, and I hope you have a great rest of the conference as well.

Dr. Al: It’s wonderful to be here at the conference, and it’s wonderful to see you and hear your voice. Wherever I go, there’s Kevin. I hope you enjoy the rest of the conference, too. It’s our family reunion.

Kevin: Absolutely.