Title:
When Disability Changes Again

Subtitle:
Alycia & Marty on Aging, Caregiving, Marriage and Learning to Adapt

Transcript:

Alycia Anderson: Welcome to Pushing Forward with Alycia, a podcast that gives disability a voice. Each week, we will explore topics like confidence, ambition, resilience, and finding success against all odds. We are creating a collective community that believes that all things are possible for all people. Open hearts, clear paths, let’s go.

Welcome back to Pushing Forward with Alycia. I am Alycia Anderson, your host, reporting this episode from bed. If you follow me, you’ve seen that I’ve been on a little bit of a medical journey. Actually, Marty and I have been on a medical journey together over the last, I don’t know, 12 weeks or so. He is co-hosting the episode with me from his office, not from the bed, to just give our supporters the people who are following the show a little update on where we’re at, how things are going, and just check in with you, ’cause I’m getting a lot of messages and a lot of questions.

Marty, first of all, welcome back to the show.

Marty Anderson: Thank you. It’s been a minute.

Alycia Anderson: I was just thinking, it’s been quite a while since you’ve decided to grace this show with your presence. What’s up with that?

Marty Anderson: I’m pretty busy behind the scenes and constantly working, and we’ve had a stellar list on the podcast. And so there really hasn’t been a time for us to jump in. I know we’ve been wanting to, and we’ve been planning, and we know that we needed to get in here and do another episode, unfortunately, it’s coming through, this type of situation.

Alycia Anderson: I love it that you just mentioned our stellar lineup that we’ve had, because that’s one of the reasons why you and I have not come on to have, number one, our three-year celebration of the podcast.

We’ve had all kinds of milestones that we wanted to celebrate, Disability Pride Month, we didn’t do an episode, because we’ve had some big episodes. We’ve had… Jay and Pamela, Sam Schmidt, Spencer West. We’ve had massive people on the show lately, so we’ve been pushing our episode to the side.

So I guess that’s part of the reason why we’ve been missing you a little bit. But, I’m really happy to see you today, and I think that it’s important for us to come on and just give a little rundown about what we’ve been going through together lately. Talk a little bit about how this dual disability relationship has been challenging us through the medical challenges that we’ve been facing with me.

And talk about slowing down a little bit. We’ve been kinda forced to slow down, and, what that looks like and feels like, and how it’s been, not only just, logistically, but emotionally, for me it’s been pretty hard to slow down. But you know, I wanna first and foremost say thank you, Marty, so much for being my partner in all of this.

I don’t know how I would’ve gotten through the last 12 weeks of all of this unexpected medical things that we’ve been dealing with without you there to love me, support me, and take care of me while I’m, you know, definitely needing some help.

Marty Anderson: Thank you for that, but it’s my pleasure. That’s what I signed up for when I married my sweet wife. we both knew that we were gonna have challenges with our disabilities, but also knew that we were strong enough and witty enough and adaptable enough to figure things out on the fly. And here we are getting ready to celebrate our 15th anniversary this year.

So we’re doing it. We’re alive. We’re making things happen, that’s just what we try to doshare the wisdom. That’s why we started this company in the first place.

Alycia Anderson: Yeah.

Marty Anderson: Right?

Alycia Anderson: And they say sickness in an health, so we’re like living up to the commitment.

Definitely. So I think one of the biggest challenges, you and I were talking about before we got on, is this whole like aging with a disability. And you and I both have different disabilities, and depending on the season of life, they flare up, they’re active.

Our bodies are changing. We’re having to reengage with our disabilities in different ways. And I’ve always said for me, my disability being a congenital disability, that I’ve been this like science project that’s gone right. And though when you see me from the outside looking in, I look like a typical wheelchair user, really the things that go on inside of my body with my organs is, is pretty extensive and very complex.

And there’s moments, seasons of my life that those complexities forceintervention. It is part of my life. And we have run into those things over the last, 12 weeks or whatever. It started in May. And it’s come with aging and disability, and I’m perimenopausal, and my uterus is growing and expanding and this whole process.

And I only have one functioning kidney, it’s putting a lot of strain on my kidney, on my bladder, on my stoma on my breathing, onmy digestive system. And it’s all come to a head in a moment, which was when I was in the hospital for a bowel obstruction about 12 weeks ago from eating a carrot.

And we’re like, “Wow, a carrot. Carrot is stopping the system. What is going on?” And from there it’s been a progression of hospital stays, going in trying to get the uterus to shrink and different procedures, that creating other problems. Me being in the hospital again last week with my kidneys not flowing well and having to get a nephrostomy tube in my back where I’ve got a tube hanging out of my back draining urine right now while we’re trying to solve for things.

Marty Anderson: Before we get too complicated for our guest

Alycia Anderson: Yeah, go ahead.,

Marty Anderson: This has been, in essence, just a, a search for relief, as we’ve been going through all of these things, and it’s been challenging right? There’s all the physical aspects of this, there’s a ton of emotional aspects too, with the strains and the stresses of being self-employed which could be an episode all by itself.It was about 10, years ago that we were in this situation again with a nephrostomy tube into your kidney but we were working under different structures then. You had all of the support of being a full-time employee on benefits, working for a company, being able to take medical leave. And, here we are now facing all of this in a different way, where we’re self-employed. There’s no let me notify my boss that I’m gonna be out for a month. It’s not only do I have to face all the challenges of running the business full-time, but I have to do that while I’m working through the obstacles of my health at the same time.

Alycia Anderson: And you know what’s funny about that is you think it would be opposite and easier. Like, oh, I don’t have to put in for sick time. I run my own business, I make my own schedule. We do that together, all those things. But the reality is there is no team to take the work, when we’re dealing with stuff that we have to deal with and prioritize first.

So that part has been extremely emotionally draining and difficult for sure.

Marty Anderson: What has scared you the most about that?

Alycia Anderson: Losing momentum. I mean, we had a really successful Disability Pride Month. We were at Disability:IN. I won the Pitch Perfect competition for being the top disabled-owned business enterprise at the conference. There’s been so much energy and bookings coming in, and just a lot of really great things around the business that the thing that’s, like, really scared me the most is losing momentum.

I have felt that there’s moments that I have to stop. I cannot work. I need to let my body rest right now so I can recover fully. And that has been extremely difficult, challenging, and all the things, for sure.

Marty Anderson: Yeah, and it’s been challenging for me too as being that person trying to stay calm and strong for somebody else while they’re going through all of this. And it’s required me to jump in and do some things that has also helped us push forward in our business with becoming a little more connective with clients and customer care outside of just my normal AV tech guy helping on event days and making sure all the tech is running correctly.

Alycia Anderson: You do way more than tech, Marty. Okay. You know that very well. Your role is massive in the company, and I don’t need to list off all of your roles, but you do way more than that.

Marty Anderson: Well, that’s very nice of you. I know I do quite a bit more than just the tech. This has been compounding we went through that NG tube and the bowel obstruction in May a beautiful month of June hosting family and being able to take some time off for your birthday, and then straight into a very stressful but rewarding Disability Pride Month, where we had over nine events and even put on our very first live webinar, which was a complete success in bringing in interpreters and making sure that the captioning was on, creating a form to house all of this that would create a gated pathway for our IP, and then enabling all of the people that have joined to have fourteen days extra of access to the recording.

And that all goes in with our major plans of trying to boost into our Own It Mastery and all these other projects that we have going on. But it’s really straight out of that into our trip to Dallas, this Disability: IN with the Pitch Perfect win was amazing. And then coming back all of this kind of hit us, a little bit of this running and going, to the point where we were like, “Okay, let’s shift. Let’s make a plan to approach the things that are happening in your body.” And that’s when we went in for that embolization procedure tried to be a little forward-thinking to create some relief for your body and all the stress of the pressure pushing on your organs.

Alycia Anderson: Embolization of my uterus, which is to reduce the size of my uterus because my uterus is causing obstruction of my kidneys right now, which is relatively not good.

Marty Anderson: Yeah. And that procedure was a success, and we had it two weeks ago. Then all of a sudden you started feeling some pain two weeks out from this procedure, and it was more pain than you were used to. It wasn’t normal, and that started to cause us some concern, that’s how we ended up in this most recent hospital stay, our third in the last three months. And tell us a little bit about what happened.

Alycia Anderson: I just started getting really bad flank pain and went into the ER, and they decided that my body is very swollen internally right now from my uterus. My uterus is huge. It’s causing stress on all of my other organs. And my kidneys were screaming for help, so they placed a nephrostomy tube in my left kidney, which is my good functioning kidney while my body is healing from this uterus embolization, which takes about two months to three months for my uterus to actually shrink from this procedure to give my kidneys, my kidney, my functioning kidney a break so we don’t have any issues with you know, kidney…

is it called?

Marty Anderson: Failure.

Alycia Anderson: That’s what it’s called.

Let’s not get too far into the woods with all of our medical diagnoses.

So the point is, is I’ve got a nephrostomy tube in and my life has changed right now. And I’m facing a lot of challenges with it. It’s very, very difficult. I’m learning a new way of adapting in my wheelchair, in my life, in doing just day-to-day things on top of having, a big schedule of events coming.

A lot of things that we need to do, and this is gonna be the new new normal of living for the next several months. And Marty and I are in adaption mode, and that’s what disability requires of us is when things shift, when things change to find a way to adapt to it and continue on.

And this has been a very harsh reality for me, and the last few days especially, I’ve been pretty depressed. I’ve been crying a lot. But this morning I woke up and I felt better and I felt stronger and I felt more like myself and I’m ready to figure all these things out so we can just, get things back together and move forward and I can get back to myself, but it’s been hard.

Marty Anderson: Yeah, I love how you’re owning that it hasn’t been easy, but also owning that you can’t let things stop you in life. When they do happen, you gotta keep moving, you gotta keep pushing forward, you gotta keep trying to do all you can to maximize what you’re doing in life. And this experience has really taught us so much. It’s taught us how much people care about us with our friends reaching out and especially our local ones.

“Can I bring over a meal for you? Is there anything I can do for you? Can I watch your dogs?” And to all of the other people out there that are just sending their support virtually with phone calls. Those alone can be exhausting. The constant sharing of the story, and this is what’s going on with me, and to make sure that you’re getting, information out to those that matter most sometimes. And that’s been exhausting in itself. But, if you could wrap it up in one or two sentences, what is this teaching you in this experience? Because I know that in your speeches, you share, that these are the moments in life that bring more richness, that bring more to the experience. And it’s these hard things in life that when we learn to overcome them, bring us a lot more joy.

Alycia Anderson: That’s a challenging question right here in the moment. I don’t think I’ve learned yet what I’m supposed to learn from this round, but I am pushing through it. There’s no other way for me to get better or to find what I am to learn and where I’m to grow from here than going straight through it and, facing it head-on moment by moment.

And, that’s what I’m doing. So TBD on what I’m learning from this right now. The little things that I’m learning, and I don’t even know if they’re little, but that it’s okay to rest. That I have an amazing husband that is gonna help me get through things. That I’m not alone, that I don’t have to be the strongest person in the room every day.

And that it’s okay to say, “I’m too tired to have a conversation. I’m too tired to post a social media post. I’m too tired to do a podcast episode. I’m too tired to do whatever.” And that’s, that is where I’m at right now. So I’m just trying to, preserve what I can, be, productive when I can and to rest when I can.

And the most important thing is I’ve just been reflecting on our marriage a lot and how important you are to me, and that our love helps carry me through this. I don’t know how I would do it alone. And we’re dual disability. Let’s talk about that a little bit. Let’s talk about this experience for you ’cause I know this has not been easy for you at all.

Marty Anderson: Yeah, I’m really proud of us for accepting the lives that we lead so fully. I think about it and I’m like just this previous hospital, you went in on a Friday. We went in at 4:00 AM in the morning ’cause you didn’t wanna sit around the emergency room for nine hours to get in.

Alycia Anderson: Tip of the day. That was a good call too.

Marty Anderson: That was so anybody out there thinking that, that’s a tip. but we basically spent a full day on Friday and decided at the end of the day, okay, it’s time to put in this tube. Boom, they go through the surgery. You go through one single day of full recovery in there, and then Sunday morning it’s “Okay you guys are clear to go home.” And all of a sudden we’re like, “Okay, awesome. We wanna get her out of here. We wanna go home. We wanna be with our dogs. We wanna get back.” We’re, FYI, just watching Alycia’s sister’s dog too. We’ve got, more extra things happening. We’ve just had her aunt and uncle come through for a visit, trying to keep the house clean and operating and all these things. And but yeah, Sunday morning, boom. The funny thing was we didn’t even have an escort out to the car. We had taught the nurses i- in this department we’re fully capable, you guys don’t need to worry about us. And literally they handed us a bag of goodies for dressings and things and said, “Okay, we’ll see you later.” And just you grabbed the back of my chair, and we strolled right out of that hospital down to the loading area where there’s three or four other people with a nurse waiting for them to help them get in the car. And here we are “All right, babe, just stay right here. I’ll be right back.

I’m gonna get the car.” Boom, drive it over. “Okay, get in.” so the dual disability piece of this has been, at times a little miraculous when you consider that my wife’s in a very fragile state with a lot of pain from the surgery site and not being able to transfer and do the things as elegantly and swiftly and easily as she always does. So it’s required us to dig deep. We’ve pulled in from our experiences in the past with our friends with disabilities. I know from my experience traveling back and forth across the country with Rafael Zamarripa, a high level quad about how he had a transfer board, and I ordered one of those so that we could make the transfers easier in and out of the car and onto the bed, and the different things and tools.

Of course, we have some minimal stuff around the house, like a shower chair and a handheld this and that. But, Yeah. There’s a lot to unpack with all of the details of the life-changing no, you don’t get to sleep all night long, eight hours. You gotta wake up every two hours to do this, take these pain meds, take this, do that. And so we even had for the very first time, a home healthcare nurse come to our house. How did you like that experience?

Alycia Anderson: I mean, it was pretty good. They come to you instead of you going to them. But I think you’re avoiding the question. Like, we’re talking about dual disability and caring for each other, and like when we got married, that was a big question mark of are you guys gonna be able to take care of each other when obviously things like this are gonna happen?

And you know, like for your disability, like you have spinal cord injury, you can stand on one leg, but you know, you’re a wheelchair user, and so you’re helping me with transfers. You’re helping me take baths. You’re helping me cook, clean. Like, you’re really busy around the house right now. And the dual disability relationship, though it might be harder in certain scenarios to figure out how we’re gonna take care of each other, there is always a way.

But the beautiful thing I believe about … being a dual disability relationship is that we understand it. Like, you get what I’m going through. You know, I don’t have to feel like I have to explain things to you or for you to understand the challenges that I’m going through, and I think that that is the real beauty of a dual disability relationship is that empathy that comes in so naturally because we understand the path that is not traditional, right?

It’s a very untraditional path to live with a disability and then be in a marriage with two, disabilities and figure it out, and I think that that is, you know, been the most beautiful thing for me is going to bed at night, sleeping really hard, deep, differently right now while I’m healing, and looking over at you and just feeling loved and safe and cared for.

Andjust giving up, giving up the control that I constantly have as a type A person and just like giving it up to you, giving it up to God, giving it up to, you know, the people that love me, and you’re top on that list. And that’s the beauty of our marriage, in my opinion.

This is where our marriage really shows up. This is where we’re reminded why we chose each other, why we decided to do these things. You know, not because it’s gonna be traditionally easier, but emotionally like we get it for each other and you know. So it’s been a re-enlightenment of our love for me to, experience those things over the last week especially.

Marty Anderson: Well I’m glad that, this is helping you reignite that flame because, I always like to keep that flame burning strong.

Alycia Anderson: It’s always burning strong. I’m not saying it’s not burning strong, but there are moments in relationships that remind you, where that deep love comes from and, how it’s developed over time. And these are those moments that they shine really bright, and those, reminders are, the bright part of the day when things feel dark.

‘Cause things have been dark for me lately in a lot of aspects, so.

Marty Anderson: I’m glad to bring that light into your life, sweetheart.

Alycia Anderson: Yeah, you do.

Marty Anderson: And, I love the fact that, yes, we are a dual disabled couple and there’s a lot of empathy But I wouldn’t say that it’s unique to just dual disabled couples. I think that any disabled couple whether there’s one able-bodied and one disabled person, that natural empathy and there’s that understanding that is required no matter what.

And it’s just maybe a little more, involved or complicated for us with the limitations and the aging. I’m not as spry as I was in my 20s in my 50s and there’s all the complications of that as well. But let’s bring this back around to a close here for a quick episode for our fans out there. We’re really just trying to throw this episode together so that we don’t miss out. We’re dedicated and, to our project here with this podcast and we know that there’s a lot of people out there that are listening on a weekly basis, and we wanna rise up to do what we can to continue our traditions here and hold strong. Would that mean that we’re going into a pushing forward moment?

Alycia Anderson: I think we should go into Pushing Forward moment. And before I do, like, just a shout-out to everybody who’s been committed to this podcast, who follows us on social media, who has sent me the kindest, most lovely, most wonderful messages. And I just appreciate all of that love, energy, and support, even if I don’t get back to everybody right now, it’s just because I’m going through it.

But I see you and really appreciate you a lot. And this too shall pass. And I’m happy to be able to share, these parts of my journey when I’m up for it to kind of share what’s possible in, in adapting to the things that come up in life. So and just Marty, thank you so much for everything you’re doing for me right now.

I do not know what I would do without you. So I’m just really grateful for you.

Marty Anderson: I love you and it’s it’s my job.

Alycia Anderson: All right. What’s your pushing forward moment?

Marty Anderson: Okay. Yeah, I think this is a great opportunity for a dual pushing forward moment.

Alycia Anderson: So let’s do a dual, okay?

Marty Anderson: Yeah. I’ll go first and then you go second, or do you wanna go first and I’ll go?

Alycia Anderson: Well, I think this will be interesting. So you go first and then we’ll see how it goes.

Marty Anderson: So as I face this week with these challenges that we’ve just shared, I’d love to share a pushing forward moment where my tidbit that I wanna gift away to you all right now is that things can get complicated, things can get severe, things can get critical, but it’s how we carry ourselves, it’s how we give grace and mercy to each other, because it’s always gonna be a challenge, we’re not gonna be perfect. But it’s doing what we can and rising up and just continuing. It’s not letting things be the end and getting to a place where it’s this way or the highway or… it’s always the complex, compromise that is required in a marriage.

And when you find yourselves in these especially medically challenging times, it’s so important to rely on your network, on your support to do what you can for the support of your loved one, also find the support that you need emotionally for yourself, to remember to recharge to fuel up, do all the healthy things that you can, and stay strong, resilient, adaptable and moving in a positive way for your loved one to be able to see that you’re not giving up. They can’t give up. Let’s keep pushing forward. Let’s keep going together.

Alycia Anderson: I love it. And I think my follow-up there is just when you’re going through tough stuff, and I’m just reminding myself of this in these moments it’s okay to feel, to let yourself feel it, to be sad, to be down, to be the things that you, you need to go through to acknowledge it. But also allow yourself to feel that and then aim for the light, the hope, the next day, the next opportunity to feel better because those moments are there waiting for you to enjoy.

And letting the light, the bright, the happy back into your day is really important, and there’s always something there to be grateful for. So that’s what I’m really, really focusing on myself right now to stay in a good space, so.

Marty Anderson: That’s beautiful, babe. And let’s push forward together as we continue to prepare for wonderful upcoming month of National Disability Employment Awareness Month NDEAM and all the things ahead for this year. we have our anniversary. We have our beautiful doggy Milo’s birthday.

We’ve got a lot of fun things ahead. And let’s just keep pushing forward together, babe. I love you.

Alycia Anderson: Okay, you take us out.

Marty Anderson: All right. This has been another wonderful episode of Pushing Forward with Alycia and Marty, and this is how we roll. We will see you next week.

Alycia Anderson: Yeah, we will.