Invisible Not Broken - Chronic Illness Podcast Network

Lisa listened to episode 1 of the show right before sitting down with me for an interview.

Jason: So what did you think of the episode?

Lisa: I thought it was very well done. I thought it was very emotional and very raw, very real. I really enjoyed hearing it.

Jason: I think that the voice acting in it was really good except for the paramedic. I feel like the person who just did that voice just kind of really sucked.

clip from episode 1 Paramedic (Lisa): Sir are you OK? Do you need assistance?

Lisa: I felt like she was very realistic and I would definitely hire her for a huge, big screen production as well. I am trying to find out who she is, but she did a really good job.

clip from episode 1 Paramedic (Lisa): Wait what? What do you mean? Lisa mom and Jason laughing

Jason: I don't know but I disagree with you on that and I don't think that I'll ever be bringing her back on to the podcast.

Discomfort Zone podcast episode 3: Lisa SEE LINK IN MY BIO * How chronic pain tore my life apart and brought my sister Lisa and I closer together 👦👧 * Lisa and I talk about the darker days of my illness, the impact my health has had on her, and our use of humour as a coping mechanism 🤒 💙 * #LivingWithPain #NPAW2019 #fibromyalgia #chronicillness #MECFS #CFSME #intractiblepain #spoonie #spoonielife #endthestigma #breakthestigma #itsokaynottobeokay #discomfortzone #depression #depressionlies #suicideprevention #mentalhealth #mentalhealthawareness #chronicpainwarrior #invisibleillness #chronicpainlife #chronicfatiguesyndrome #chronicfatigue #chronicillnessawareness #discomfortzone #anxiety #comfortzone #siblinglove #siblings #family

Jason: Well we will have to agree to disagree. In general, how did my condition impact you when I was at my worst?

Lisa: I actually felt guilty for going to work some days because I knew you were sick and I felt almost like I needed to be at home with you guys trying to help everyone. You and I were texting back and forth a lot and I would always try to check in with you, almost every day. I felt like part of my job as your sister was to touch base with you everyday and just remind you that we all love you and that we cared about you

Jason: I think you guys did an incredible job of that. Maybe it didn't seem like much for you guys at the time, but I would call you many evenings during the week right before bed. I'd be feeling my worst pain, the side effects of the medication would be kicking in and I would just feel like total crap. I would just call you and I'd be breaking down. Even if I left her phone call and I was still… What’s the right way to explain this…. Even if I wasn't fully calmed down, just having somebody to listen to me was incredibly helpful.

Lisa: Yeah I think that's what you needed for a big part of it. I think all of us felt very helpless and I think mom and dad especially felt helpless in their only way of feeling like they could help you as through instrumental means, so providing you with proper care, providing you with means of comfort and food. That was how they were able to help. But I think from an emotional standpoint a lot of us had run out of options. There was no way of telling you that you just have to tough it out and to keep pushing, keep pushing forward and keep going on. It was hard to get you to do more than you were already doing on a daily basis. One example was when you were just walking upstairs, you wouldn't even come downstairs for a little while and the thought of trying to encourage you to go outside would not have even happened. So I think the main thing was just even to encourage you to maintain your current level of function and to prevent any future further deterioration. I think that was a big part of it.

Lisa (right) at age 8 and Jason (left) at age 6 dressed in soccer uniforms for recreation league photo night

Jason: Definitely. From an emotional standpoint, I think something that you really excelled at was just adding a little bit of humor to my life. So I'm not really sure if you were trying to be helpful or if you were just trying to be a jerk, but you'd come in, you'd pull off my socks and blow in my ears and just…just the image of you doing that to me when I don't have the energy to retaliate. Were you trying to help me out there or were you just trying to be mean?

Lisa: So Jason and I always play this game called touched you last. I actually saw you being sick as an opportunity to win a small victory.

Jason: Can you kind of explain what the game is?

Lisa: It's pretty self-explanatory. But basically whenever you and I are saying goodbye to each other, whoever touches the other person last wins. So most families’ goodbyes revolve around hugging one another or shaking hands. Jason, you and I… it's almost like a game of tag and whoever touches the other person last is victorious. So I saw you being sick and as very kind of twisted opportunity for me to win a little something of my own every time I saw you. So that's why I blew in your ear or pulled off your sock because I knew you weren't going to be able to fight back and I knew I would win.

Jason: But now how does it feel to lose at touched you last game every single time we play, now that I'm feeling a bit better?

Lisa: So I have kept a tally of how many times I touched you.

Jason: are you keeping score?

Lisa: I'm gonna let you win a fair number. I'm still ahead. I'm trying to be nice and let you catch up a little bit here.

Jason (left) and Lisa (right) wearing their triathlon uniforms after completing an Olympic distance triathlon in 2011. This was prior to the onset of my illnesses.

Jason: now getting back to when I was really at my worst. I was just terrified that this downward spiral that I was in was just going to continue. It was out of control, my emotional state was not steady, I was in a constant state of fight or flight. During several of the conversations that I'd have with you, I would talk to you about my suicidal ideation. I'd say, ‘I don't know how much longer I can do this for. Just being running out of steam with everything. What was that like for you and were you afraid that you were going to lose me?

Lisa: That was terrifying for me and for all of us. At some point we were seriously concerned about your safety, so we brought you to the emergency room. They sent us to a mental health hospital emergency room after we had waited for a little while. We brought you there because we were seriously concerned that you were going to attempt suicide. We even kept all your medication separate and away from you. Mom would dispense you your daily dosage of pills only one day at a time. At some point she decided that it was too risky to keep all those medications in your room. But yeah I was. It was terrifying, we all felt super helpless… There is no other worse feeling that I can imagine or that I've gone through than seeing a loved one who's like that mentally ill. You’re not able to do anything except tell them that you love them and that you're there for them, try to support them and give them things to think about. To realize that they do have value in your life and in other people's life.

Jason: Having the support of family and friends for me really meant everything because, the way I felt at the time, was that I was draining the energy out of mom and dad. I could see the effect that that my condition had on them and I was boxed in. Just for my listeners, I was basically boxed away in my room for the majority of a year and a half straight. I just felt so disconnected from anything productive that it was really like what is the purpose for me to be here. But having a supportive family and friends just really meant everything. You know at that time I was questioning like yeah, what is my value in the world? But when I had all those family and friends that were constantly coming and spending time with me despite my state that was like Whoa I guess I am worth something.

Lisa: and Jason, you have a ton of friends who continue to see you from both high school and from university all the way all the way through your illness. I think that played a huge role in keeping your spirits somewhat up and I think having that tight knit circle of friends prevented you from going down that pathway of actually following through on any suicidal ideation. I think had you not had those friends … I don't know, I don't even want to think about how things could have turned out. But I think one of your one of your qualities that I appreciate the most is your sense of humor. I remember you could be crying your eyes out one moment or biting onto a towel or face cloth just because you're in so much pain with tears streaming down your cheeks, and the next minute, you would think about a funny joke or a pun that you had read online. You would be telling me one liners and I found that seemed to even bring your own spirits up too and you felt accomplished when you were able to make other people laugh and I think that probably helped as well.

Jason: Thank you for that. I think that that kind of added to it because nobody was expecting me to tell a joke. So when I would tell them it would catch people off guard. I remember I had a friend who was in the room, her name was Molly, she was just asking me about my day and I could only whisper at the time so I was just like, ‘oh it was really shitty, I saw a nurse. She really got under my skin.’ And Molly just looked at me like really concerned. And she's like, ‘Oh no. What did she do? I was just like, ‘Well how else was she supposed to get the blood of me?’ It would really catch people off guard.

Lisa: But yeah I think everyone appreciate your one liners.

Jason: Thank you. I mean some of them were pretty shitty.

Lisa: they were good.

Lisa (left) wearing a plaid scarf, black winter coat, and blue hat and Jason (right) wearing a green toque and blue winter coat. They’re out for a walk in West Deane Park and are both smiling.

Jason: Do you have any advice for other families that are going through similar crises that we were in?

Lisa: I would say just keep reminding your family member how much you love them every single day and don't let them forget that. Our family was not a super affectionate or loving family. Growing up, we all loved each other, but that wasn't something that we necessarily communicated all the time. And I think Jason, you being sick brought that out a lot more. I feel like we are closer as a family now and we're definitely more affectionate. But I think that's super important to make sure that the person who's sick knows that their family does love them and does care about them and that they just feel that unconditional love. I think that keeping a very open mind, finding the right health care team to support you and not necessarily jumping around from doctor to doctor to doctor to doctor. Find somebody who has experience dealing with that condition. Find whoever the top of the top of the field is. You found that at a rehab hospital in Toronto. I felt like your interaction with that doctor and physiotherapist was really the turning point in your health. I feel like the message that he conveyed to you was the first positive message that you received from the health care professional in probably five years. I think that made a huge difference. So the way in which you say something to a patient, family member, or friend, it's not just what you're saying but it's also how you say it. Coming from a doctor a position of authority, those people in particular have a lot of power to alter the outcomes of the patients who really need that help.

Jason: Definitely. And just something that I would add onto the end of that: even if you are showing affection towards that person who is suffering. Even if they don't seem to be responding to it, don’t take that as a sign that you should stop.

Lisa: Yeah. Makes sense.

Jason: Anyways. Karl and Claire are here. So I think that this is the end of the interview. Perfect timing because we basically just finished. But yeah thank you for coming on.

Lisa: Yeah. No problem.

Jason: OK.

Lisa: wait what?

Jason: touched you last. Wait what?

Lisa: wait what?

Jason: wait what?

Produced by: Jason Herterich

Sound design by: Jason Herterich

Audio engineering by: Justin Maradin

External Consulting by: Dan Samosh

Lisa’s website

Depression resources

The National Suicide Prevention Lifeline or call 1-800-273-8255 (1800-273-TALK)

The Crisis Text Line 7 Cups of Tea An anonymous, 24-hour chat with trained professionals