Jan 13, 2020
– Susan White
I don't think people understand narcolepsy. They don't understand that. I'm sure any other invisible disability. It was hard for me to talk about because I know you're with all your colleagues your friends you're focused on work and you've got your adult daughter at home in the dark in a room that she's you know for three days maybe she only got up to go to the bathroom and eat more food. I mean it's just horrible.
INTRO
When I was in college, I was a rower on the crew team. This meant that I would get up really, really early to be on the water by 4:45 AM. Exhaustion would hit later in the day and I found it particularly hard to stay awake in afternoon Spanish class. I would doze off regularly during conjugation exercises and my friends teased me, “Tenga narcolepsy?”. It was an ongoing joke and, until this podcast episode, I had no idea how debilitating and devastating narcolepsy can be on an entire family.
Today’s episode of Handle with Care is sponsored by FullStack PEO. FullStack supports small businesses and entrepreneurs, expertly taking care of your people and benefits so you can focus on what matters most, growing your business. We are also sponsored by Handle with Care HR Consulting. From death to a diagnosis to a relationship transition, we equip you to support people when it matters most.
Susan White, today’s guest, is many things. She is a life-time Indianapolis native who loves her corner of Broad Ripple. Susan is also a breast cancer survivor and the mother to a daughter with narcolepsy, which she says is much, much harder than battling cancer. But before we get into her story, a little bit more about Susan.
She worked for many years in the field of HR. Podcasting is a great love and hobby of hers. She is the co-host of the Joy-Powered Podcast, where I had the pleasure of being a guest last year.
- Susan White
People spend so much time at work and they put so much of themselves in it that if it is not a joyful environment it can actually really bring the bring the person to their knees. So the point of our podcast is how do you create joy in the workplace and then how do you sustain it. So, our target audience in general are business leaders and H.R. professionals.
- Liesel Mertes
Tell me a little bit about your family.
- Susan White
Sure. I'm married to Bill. He teaches at IEP. He is an architect and he loves construction management which is what he teaches. We've been married for all right don't think really quick do the math. I think 37 years. Congratulations. Thank you. I have a daughter, Erin. She's 35 years old. She works here in the broader Broad Ripple area and we have a son Grady who is married to Amber and they live in Scottsdale Arizona and they have my grand dog.
And now, to some of the hard stuff: when Susan was 49 years old, she was diagnosed with breast cancer. She was working for a financial institution as the Chief HR officer, an exciting position.
- Susan White
So I was in it for about six months when all of a sudden I went from my normal mammogram and even risk right after right after I'd had the mammogram done the technician came in and said I need for you to talk to someone because we see something on there that doesn't look right.
Susan was sent directly to the hospital for a biopsy. It was a fast moving cancer.
- Susan White
When I look back to those days I remember that I had I felt like I had inside my brain a neon light that was saying cancer, cancer just kept flashing.
- Susan White
And in the meetings I found myself unable to concentrate which was not me. I was just so distracted with this flashing neon light in my head. You've got cancer you've got cancer. So it was it was it was a real disruptor and trying to process it all right.
- Liesel Mertes
Well and then it sounds like the nature of the cancer was fast moving enough that they wanted to intervene quickly. How did that go with lining up medical leave? Did you find that your employer was receptive? What were some of the, the processes that played out for you?
- Susan White
You know, it's interesting as soon as I found out I had breast cancer I started doing a lot of reading and I read something like I think the book was Chicken Soup for breast cancer survivors or forgive me if I thought the exact title anyway.
- Susan White
It said in there that you will never feels so loved as when you have breast cancer in your whole life. And that's exactly how I felt I could not get over the outpouring of support and love almost every single person in this financial institution that I told they, they knew somebody themselves who had been affected by breast cancer and they were so supportive. My, even though I'd been in this business less than six months the CEO of the company is like oh you just go give him health is just you go give him hell we're right here for you.
- Susan White
I mean it was just unbelievable amount of support.
Friends began to bring meals, out-of-town colleagues offered support and housing as Susan considered second opinions. Her husband noted that their house began to smell like a florist shop because of the overflow of flowers. And then there were the pjs and slippers and chocolate.
After treatment, she returned quickly to work, despite the exhaustion of long days. Eleven months later, she was diagnosed with endometrial hyperplasia with atypia, a cancer that necessitated a hysterectomy. She was already weak but heading back for an additional surgery. And that is when Susan’s daughter, Erin, began to display worrying symptoms.
- Susan White
But anyway, for us that was kind of building and then I realized what was going to have to happen I was gonna head back into a major surgery. All of a sudden, our daughter who had mentioned earlier she was experiencing some real problems. She was falling asleep a lot. She was not being able to get up. She was living independently she was working as a paralegal. She lived with a girlfriend in a apartment downtown and we thought she had launched for life right. Well, all of a sudden, she was like panicking a lot really high anxiety because she kept sleeping and could not wake up.
- Susan White
She was being extremely forgetful. She kind of had a history of always being a little forgetful but I mean it was it to the extreme she was becoming kind of paralyzed she'd say like I could see she would be driving as she could see like a parking lot she needed to get to and she would be so exhausted she wasn't sure she could get there. She, whenever she got off of work, she would just go and lay down and she thought
- Susan White
I'd still tell anybody now the best day of her life is when she got the diagnosis that was narcolepsy because she thought she was losing her mind.
Narcolepsy is still considered a rare disease. For Erin, the onset was quick and devastating. This autoimmune disorder can be triggered at any point in your life. The onset often happens in late teens and early twenties. Erin was just 24. And the symptoms appear on a spectrum. Some people are functional with medication and there are others that really don’t get out of bed again.
- Susan White
It is so chronic and so awful.
- Susan White
Erin is on that spectrum. But she at least initially without drugs is really, really bad.
- Liesel Mertes
Well and what is that like? So you're in the midst of your own health like cesium which is pretty complicated. What was it like for you as a mother to be absorbing this news from midtown Broad Ripple about what's going on with your daughter?
- Susan White
It was, it's devastating. I often have said that I wish that God had given me the narcolepsy and that Erin I know how to organize myself through things. I'm a really good cope-er. And I just hated it. I'm not good at coping watching somebody I love suffer and she really, really suffered. She lost her job very quickly because she could not stay awake just kept she was to fall asleep standing up she fall asleep there. They moved her to her less intense role from paralegal to like the front desk receptionist.
- Susan White
She couldn't stay awake there. I kind of get why you can't have a in a law firm. The receptionist asleep but unfortunately for her she lost her you know was not able to stay in an apartment. She had no money coming no money coming in so she moved home with us. And so, I was recovering I actually started back to work before she moved back in with us but it was a long journey of her living with us for about five years.
- Liesel Mertes
And what are the emotions that she's having to make these transitions like are there or are there moments that are that really stand out in your mind as her mother of just how you felt walking with her on that journey?
- Susan White
Erin we would say things that would just crush me about what she was experiencing and I I could feel it for she.
- Susan White
This was not the life she'd intended right. She had a life that was not living in her old bedroom in the dark. You know, it's trying to get capture enough sleep. She'd say to me, Mom that is where I go for my dreams to die. I was just so sad. And I think that she had a really she went through several years of understanding the life she knew it was gone and her new life was going to be on her best day and a best day with all the meds that are very powerful harmful types of drugs. But to get her to about 80 percent of what you and I have. So, I think that for me watching all of that was just the most disruptive thing in my life.
- Susan White
You know I'll take, I'll take cancer tomorrow. I will. I'll take you know if any more work gets to get rid of female workers I'd give them up. I would do anything I could not to watch her go through that.
It was a challenge for Susan and her husband to know how to support Erin well.
- Susan White
Yeah. I tell you it was really hard those first few years especially when Erin was living with us because we were almost empty nesters our son was finishing up college and so we had a lot of time to ourselves and then to have somebody in the house who's not well was really tough. And my husband often said you know he was trying to figure out where you know how much of this was the illness how much of it was Erin like. Is it laziness that she's not doing these things or is it she's incapable of doing these things.
- Susan White
So that was a really tough time through that because I am, I tend to believe everything is the illness. And Bill believes that there's always a personal accountability so we can. I think we're in a good place now figuring all that out. And she lives independently which is superb but we're very involved in zero a lot which is I think really good. But it was I think there was a there's a road to walk there and you're never going to have both on anything in life. I think see things exactly the same way.
- Susan White
But in times of trouble and times of angst it can really test your mettle.
- Liesel Mertes
I imagine that to care for your daughter was asking a lot of you. How did you find that that intersected with your world of work and the time and space you needed?
- Susan White
I don't think I did it very well. I know I did do it very well. We big at work all the love and support you get when you're sick. It's not what you feel when you've got an adult child who has something horrible happen to them. I think if it's all invisible. Right.
- Susan White
If Erin had been in a terrible accident or if something physically had that people could see and understand. I think it would be different. I don't think people understand narcolepsy. They don't understand that.
- Susan White
I'm sure any other invisible disability. It was hard for me to talk about because I know you're with all your colleagues your friends you're focused on work and you've got your adult daughter at home in the dark in a room that she's you know for three days maybe she only got up to go to the bathroom and eat more food. I mean it's just horrible. I used, I for the first couple of years I know I walked around with a big lump in my stomach that I couldn't figure out you know how to lessen it a little bit of time I did have outside of work I would try to research like what's going on at this what is this about.
- Susan White
We found that narcolepsy network which is a wonderful national organization that help people and caregivers of people with narcolepsy. They have national conferences. We started going to national conferences. It was so helpful because it helped us learn what was happening what causes this disease which is they still don't know but they have different ideas of what might what you can do with it. How do you manage to live around it is incurable. They're working very hard to find a cure but may not be in our lifetime. So, it was also good for me to meet other parents of people who had narcolepsy and for Erin to meet other people who have narcolepsy because it's hard to find people who have it.
- Susan White
That was very helpful. But around the world of work it was tough because people didn't know I mean I'd share it but I don't share it widely because it's a hard thing to bring up. I just I had kind of a kind of a dark cloud over my head for a number of years.
- Liesel Mertes
Did you feel like that had an effect on your presence with your colleagues or within your projects?
- Susan White
You know there's that aspect of a cloud hovering.
- Liesel Mertes
How do you feel like it came out in your interactions in a particular way?
- Susan White
I know that I felt like I realized that the medicines you have to take are extremely expensive. Of course, Erin wasn't working and she's 24 and she. Back then it was we didn't have the Affordable Health Care which you could stay on your parents insurance to age 26. So we didn't have that option. And so we were paying for medical insurance for Erin and we were paying out of pocket incredible amounts of money for drugs. We were paying thousands upon thousands of dollars. One time that sounds horrible. What time it was to Costco to fill out order one of one of her prescriptions and it was $1125 and I wasn't expecting $1125 at that moment I just remember crying there I was across Costco and I had to figure out at that moment to get $1125 for one of her prescriptions for one. So anyway, it was just it was I felt as though with work I needed to work even harder because I didn't know if Erin would ever be able to work. I didn't know if Erin would ever have insurance again other than what we could provide. So yeah, it rocked my world. It certainly did not let me keep my eye off the ball because the ball working was extreme more important than it ever had been you needed to me.
Susan is a self-described optimist…and even in these trying times, she channeled her energy into helping others within her organization. She joined a working group as the global co-chair, devoting herself to making space for people with disabilities.
- Susan White
But we grew by thousands and thousands of employees in Australia and India and the Philippines and we'd already had a chapter in England and several in the United States. But it was so great. And I got a chance to talk to people who were caregivers and people disabilities who said I never felt comfortable talking at work about my disability until access ability started becoming really popular and it was OK so I got a lot from that.
- Susan White
It was something I could do in the world of work to try to speak to the pain I was having in my personal life.
However, after 35 years, Susan got news that her job was moving to Chicago. Unwilling to leave Erin, Susan left her job instead.
- Susan White
But so, my job was eliminated and it really, I often say was the best thing in my life. That disruptor was great because I needed to be pushed out of that nest. But it gave me time to focus on Erin and to really figure out what type of insurance was the best one for her as opposed to what we would just get thrown. It helped me really help Erin get back on her feet and I think it also helped Erin when she realized that I was losing my job and has expensive as medicines doctors insurance was she realized that she needed to do to figure out how to work around this disease.
Erin went to a vocational rehab program and got a job working with Goodwill, part-time.
- Susan White
So the last five and a half years, Erin has been working the value that she gets in her life being able to work just brings me joy every day. I try to remember to start every prayer with thank you Lord for Erin being backups upright in the world and getting a chance to work.
- Liesel Mertes
What do you think, it's a two part question: first part, what is the greatest misunderstanding or thing that you wish people could know about narcolepsy in particular?
- Susan White
You know narcolepsy has been written up about it kind of in a joking way and in movies it's kind of funny. I got to tell you it's the least funny disease I've ever heard of.
- Susan White
It's so sad. So I think that's it. That's probably the number one thing to be aware of with it. And I guess second of all is that it is not only is it physical and that although it's that appears to be invisible because people can't see you've got it is that it also kind of it, it messes with your cognitive abilities when you don't get enough sleep. Now people realize this you don't get to that level of rest that you need you're not restored and your brain is functioning right. So, a lot of people's narcolepsy will tend to be very forgetful.
- Susan White
It's hard to concentrate. There's a lot of things that go to person with narcolepsy they have a hard time maintaining friendships or relationships because they're in bed most the time they can't make a commitment that they're sure they're going to be at sometimes until the day of the hour before. So that's a tough thing. So, if you happened unfortunately to have narcolepsy enter your lives please be patient with those individuals. They've got an awful lot they are trying to plow through every day.
- Liesel Mertes
Mm hmm. And in a more global sense as a working parent who had a child who was going through something pretty intense and it's not just episodic, this is an ongoing sort of thing. What do you think the average workplace is, what would have been better support for you or what do you think was a misunderstanding that your workplace had and how you were doing or what you needed in the midst of that?
- Susan White
Yeah. You know, I never know blamed anybody. I own what I shared with people didn't share with people. I think that people don't appreciate when you are an adult but when you're the parent of an adult that you're a parent forever. First of all. And just because your kid isn't needed to get a softball practice or have homework to do that night you know you still feel extremely responsible especially when it's an adult that you know is not well.
- Susan White
I think that would be really helpful is if a colleague shared with you that they have an adult child maybe who's got any type of a bad thing in their life.
- Susan White
Maybe they're addicted to addicted to drugs. Maybe they have a mental illness. Any of those types of things. If someone to share that with you that it's good maybe just periodically check in with them. Ask how here he's doing. You know ask if there's anything new with Joe. Just let them know. Kind of validating so that the person who's carrying that load doesn't feel like they're just carrying it alone in the dark.
- Liesel Mertes
It's just not very popular to, to have probably, that I'm struck as you say that there could be a thought of oh how can I remember all this. But we, we remember when we interact around things that we feel are important or they catch our interest. I could note your favorite sports team is and want to razz you about it every week for you 16 weeks of football season. It's there's a gap, that actually we either don't feel comfortable in knowing how to talk about it or we're not giving it that level of mental importance to think, I'm gonna remember this about Susan and I'm gonna ask her about it because it matters to her and that it's exercising a different element of intention and discipline because I can remember things about a co-worker you know it's just we remember what was.
- Liesel Mertes
Yeah right. Which interest us and it's switching gears to, this is important. I'm going to I'm going to remember and I'm going to check in around it.
- Susan White
I think if it's an uncomfortable topic people really like to avoid it and I get that, but I and I would say to you that sometimes people who do care about me and care about here and we'll say how's Erin. And I'll say you know good days or bad days doesn't mean I necessarily need to share but it's so validating that somebody even asks that they recognize how much a part of your world it is.
- Liesel Mertes
Exactly. So asking and checking in is meaningful. Are there other things that you think you know even and like me, I would have I would have appreciated this that come to mind?
- Susan White
Mm hmm. You know, I have some very dear friends who really make an effort at reaching out to Erin on her birthday or just doing really kind things for her she's loves to do art and like you know buying her art or her little note cards or they just do things that are so validating for Erin and they know her world is so small. It's sleeping or working and it's just so appreciate. I so appreciate the fact when anyone very close to me makes a point to kind of brighten her life to care for your daughter.
MUSICAL TRANSITION
- Susan White
I think if I could do it all over, I think I would take a leave of absence and really take a breath and instead of waiting till I'd lost my job to do a lot of the research to figure out what what's the right type of insurance and medicines and she would issue what the right neurologist is so and so forth I think I would have I wish I had no regrets except for the fact that if I to do it all over again I take the time to make sure we were on the right path as opposed to just reacting and learning on the fly in the moments that I could hear that.
- Liesel Mertes
Susan, is there anything else that you feel like is meaningful in your story or helpful to someone who is perhaps walking with someone whether it's narcolepsy or a different disease that you did not get to say you'd like to? Mm hmm.
- Susan White
You know I, I do believe that we all have to have hope and positivity. And it's sometimes like in your darkest days where you can't see it. You just kind of have to remind yourself you know what a gift that person is in your life like Erin is such a gift in her life. And you know you, you do the best you can in each moment. So, I just, don't be too hard on yourself. It's really important that as a caregiver you take care of yourself.
MUSICAL TRANSITION
Here are three key takeaways after my conversation with Susan
- It can be very isolating to have a sick adult child.Susan talked about how isolated she felt, how co-workers did not know how to reach out. Susan reminded us of the importance of checking-in. If you know that a co-worker has something hard going on in their personal life, it can be immensely meaningful to periodically ask how they are doing. If you are prone to forgetting, and many of us are, take time to write it down in a file do that you can remember to follow-up. Your intention and care will help to remind them that they are not forgotten.
- If you have just absorbed hard news, it could be helpful to take a leave of absence.Susan reflected that stepping away earlier would have allowed her the space to breathe and get things like insurance in order. Does your company offer this kind of support and space to employees during times of disruption?
- If someone on your staff is experiencing a rare disease, or supporting a loved one that is suffering, the expense and the process of information gathering can be immense.Susan spoke about her Costco breakdown and the many hours she spent researching and participating in support groups. Your friend or co-worker is likely navigating complex support systems and financial concerns in the midst of work and other life commitments. Be patient with them.
A special thanks to our sponsors. Are you an entrepreneur or small business owner? Does the thought of navigating health insurance and benefits make you a little queasy? If so, FullStack PEO is there to help, providing benefits for your people so you can get back to work.
Do you want to attract and retain the best talent by being an employer of choice? If so, Handle with Care HR Consulting has services to help you provide support when it matters most. Through targeted, interactive sessions, we empower you to respond with empathy and compassion during disruptive life events.
Thanks for joining us for this first episode of the new decade on the Handle with Care podcast.
OUTRO
Link to the Narcolepsy Network: https://narcolepsynetwork.org/