Kate Owens
Loss of Mom, Patti, and diagnosed with Ehlers-Danlos Syndrome
Hi Kate! Tell us, what’s your story?
Hi! I’m Kate! I live in Detroit with my husband and our dog Henri. I’m originally from Columbus, Ohio. I’m an iOS Developer and I work in the digital accessibility field. I have Ehlers-Danlos Syndrome Hypermobile Type — a genetic connective tissue disease that causes chronic pain, joint hyper mobility, frequent joint dislocations & subluxations, fatigue, autonomic dysfunction, just to name a few. I’m a lifelong cinephile with a soft spot for horror & cult movies; my favorite movie is Faster, Pussycat! Kill! Kill!… Kill Bill Vol. 2 is a close second. Detroit is the first place I’ve ever lived that truly felt like home. When I’m not working or resting, I enjoy spending time with Ari (my husband), Henri, friends, exploring Detroit, going to restaurants & bars, traveling when our budget/my health/our schedule allows, drawing, painting, making edibles, hot Epsom salts baths, Pistons games, consuming cannabis & creating stuff whether it’s writing spoken word, taking polaroids, painting, drawing — just like creating!
“Hang in there, baby. You’re in for a wild fucking ride.”
Talk about your life before your loss.
Way Before the Loss: When I was 6 my parents got divorced…they have a very amicable divorce and were excellent co-parents, we actually did Christmas together every year for my entire childhood until my last year of high school. They did a shared custody arrangement - I would stay one week at moms and one week at dads, and we would switch every Sunday at 6 pm; there was also flexibility for things like being out of town. It was all really civil and pretty good. I was always very close with my mom, I loved her so much and wanted to be around her all the time, I thought she was the most beautiful woman on earth and gave the best hugs ever. At some point when I was a kid - maybe 10 - I learned that my mom was an alcoholic. My dad had to explain it to me after she and I had gotten into an argument one night. He explained it was a disease and that it was in no way my fault, and that part of her disease was trying to take the focus off the problem - her alcoholism. My mom struggled with alcoholism for my whole life, she got sober and relapsed several times… we were always close, but we would have periods of conflict and when I got a little older, zero communication during relapsed. I refused to be around when she was drinking.
During my senior year of college in 2012 she got sober for good. She went to so many AA meetings and really embraced the program (it works if you work it - as they say in AA), and she did it - and I will always be so fucking proud of her because I am sure it was one of the scariest, hardest things she ever had to do, but she fucking did it!!
Once my mom got sober our relationship stabilized a lot - I was more good than bad, we were close again, we talked relatively frequently, and any conflict we had was the normal run of the mill mother-daughter conflict that I didn’t experience as much growing up since it was usually clouded with periods of alcoholism conflict…I was grateful to be in a good, pretty stable place with my mom.
Approximately 4-5 Years Before Loss: In the 4 or 5 years before my mom died, I was in an abusive relationship. I was constantly shamed, insulted/name-called, talked down to, yelled at, financially abused, and frequently sexually coerced by my now ex-boyfriend. At this point I had lost about 85-90% of who I was. I was also practicing extremely restrictive eating and obsessive exercising. I didn’t even realize how unhappy I was because I would be talked or argued out of my own feelings on a daily basis. From an outside perspective, it looked like I lived a great life of luxury, but in reality I was so horribly manipulated and gaslighted that I had no idea how much I was being abused…abuse is insidious and sneaky in that way.
All of the joy in my daily life was my dog Henri. He has been my guiding light and my shining star through everything. I also feel that the weekly ballet declass I was taking at the time helped me keep going when I’d unknowingly lost myself. Dancing helped me start to find myself again, and provided me with a much needed escape from my reality. Also film - I took a lot of film studies classes in college and it was and always will be a passion of mine - it helped me so much to be able to put some of my energy into watching/thinking/writing about film (I’m a lifelong lover of horror & cult films especially) and get some peace and fulfillment back from it.
Let’s talk about the loss of your mom. Can you share about your life leading up to that moment?
My life leading up the loss of my mom starts in July 2014 - my mom had been experiencing difficulty swallowing food, frequently to the point of near-choking, she also started getting acid reflux for the first time in her life. Her doctor had her get an endoscopy, which revealed a huge, red mass in her esophagus. It was cancer. A few bottles of various contrast dyes and PET scans later we learned that it was Stage 3b/4 Esophageal cancer. We read the printouts from American Cancer Society and packets of information about Esophageal Cancer - all sorts of literature that felt surreal to be reading. It was clear that Esophageal Cancer was serious, especially the further advanced it was, which was both confusing and frustrating. It was more gray area and uncertainty in a very uncertain, scary situation. Couldn’t the thing that was fucking everything up and making everything turn upside down at least be one thing or the other? Anyway, we learned from our research that more advanced Esophageal Cancer has a very low survival rate, typically around 6 months to a year.
She started chemotherapy maybe a month after diagnosis, and from that point forward until May 13 of 2016 she fought SO hard, even on the days when she had no strength, was exhausted and in excruciating pain. My mom was a fighter, and I always knew that, but I didn’t realize just how much of a fighter she was until this point in her life. I mean seriously, she was going through one of the hardest things that a body can go through - cancer and its corresponding treatment - knowing that her chances weren’t great but she somehow found strength when there seemed to be none left, she found humor in situations that didn’t have much, and she was always kind, loving and appreciative of the people in her life. She didn’t just fight and survive for these last 2 years of her life, she tried to make each day good (or at least as good as possible). She tried to be grateful for even the tiniest things (like beautiful sunsets and sunrises), despite how many things she was struggling with. She made sure that she maintained connections with people she loved and cared about, made existing connections stronger, and always expressed her love and appreciation for people. The doctors and nurses and the chemo center of the hospital all ADORED my mom because of her great personality, sense of humor, and her kind heart.
Although I wasn’t able to be with her all day, every day, I was fortunate to be able to spend a decent amount of time with her during these last two years of her life. And during those 2 years, my mom and I grew together, individually, argued, made up, resolved our past issues and became closer than ever before, and I am so eternally grateful for that time.
Can you share with us a little about your mom’s actual passing? Where you were at emotionally and physically in that moment?
While I was at the Detroit airport on my way to Austin, TX for Tiff’s bachelorette party, I got a call from Abbey, my mom’s friend turned housemate (and now one of my unofficial big sister and closest friends). She said my mom was having a really hard time standing, walking, and wasn’t doing well, so she took her to the hospital. Abbey and I figured it wasn’t going to be a big deal, that she just needed the extra care of the hospital for a few days. It didn’t really seem like it was at The End. Cut to a few hours later, I’m on a plane about to land in Austin, I buy some inflight wifi and then I start getting texts from Abbey and one of my mom’s other friends telling me they needed to speak with me ASAP and that my mom’s condition was declining rapidly.
As soon as I got off the plane I spoke with the doctors and learned that my mom was going to die relatively soon - although they can’t really tell exactly when it was going to happen, they made it clear that if I wanted to see my mom before she was gone that I should figure out how to get back to Michigan.
I booked a flight home for the next morning, as early as I could get. The next morning around 8 or 8:30 I got a call from the doctor saying my mom’s condition had worsened even more overnight and that she was likely in an insane amount of pain and was probably suffering a lot. The doctor said that I could either leave my mom intubated to wait to say goodbye to her in person once I got back to Michigan later that day, or that I could have them remove the intubation which would likely mean that she would be gone before I made it back that afternoon.
I decided that after suffering with this disease for 2 years, going through some of the worst pain in her life, and fighting tirelessly like hell, that my mom shouldn’t have to feel any pain or suffering for any longer than needed, so I had the doctor put the phone up to my mom’s ear so I could say goodbye to her, tell her how much I loved her, how strong she was, thank her for being my mom and for teaching me to be a fighter like her. It was so sad, so heartbreaking but I was just so grateful to get a chance to talk to her one last time.
After the call with the doctor, my mom was intubated and died peacefully about an hour later. She was such an incredible person, strong as hell, a survivor of so much, and a heart of gold. I am eternally grateful that I had the privilege of having her as my mom.
“She was such an incredible person, strong as hell, a survivor of so much, and a heart of gold. I am eternally grateful that I had the privilege of having her as my mom. ”
How about in the immediate days/weeks/months after? How did you react or cope?
In the immediate days/weeks/months, I was numb. Exhausted. Irritable. Moody. Sad. Stoic.
I reacted with a lot of numbness and attempts at distraction and compartmentalization. Expecting it to hurt less when it happened because I had so long to prepare for it, My mom lived for about 2 years from diagnosis - TWO YEARS - that’s two years that I had to prepare myself for the inevitable of her dying. I thought that having the time to prepare for this fact would make it easier when she died, but it didn’t - it just changed it a bit. I had a sneak preview of what sorts of emotions I MIGHT feel…it’s like looking at a weather forecast like idk three weeks ahead of time - you have an idea or an outline of what might happen but who the fuck knows for sure because there’s really no way to know until you’re in it. I think that because of all this I was expecting to have less compartmentalization and numbness when my mom died. I’d thought I already got a chunk of grieving done, but I didn’t as evidenced by my extra dosages of numbness; I was caught off guard by my emotions that I thought I’d prepared myself for and wasn’t expecting to feel all over again, so I think I made myself compartmentalize to make it through in the moment.
In terms of coping, Henri was a huge support to me throughout the entire process of grieving and the years leading up to it. He was always there, snuggling with me or my mom when he knew we needed it most. It was amazing how in tune her was with our emotions. Music played a big part in my coping - specifically the following songs - ‘Chandelier’ by Sia, ‘Alive’ by Sia, ‘Elastic Heart’ by Sia, and ‘Ride’ by Lana Del Rey. Something about those songs captured the unpredictability of not just my current situation but the entire process leading up to it…and singing along to them, just completely letting go and losing myself for a second was so fucking cathartic - it was a few minutes of bliss in the midst of the end of the fucking world, you know? The songs also offered short, encouraging statements to remind myself tot keep going when it was hard, to reassure me that it would be okay — ‘I’ve got thick skin and an elastic heart’, ‘just ride’, — these were things I could say to myself in my head on a really rough day. I also listened to myself and to what I needed - if I felt like I needed to lay in bed all Saturday and watch movies, or if I felt like I needed to talk to someone, then that’s what would happen. Also, changing my hair and getting some more tattoos (if something in particular spoke to me) helped with coping a bit - these were smaller things I did to help with daily coping…sort of like a way to take back some control in my life and use the feelings I was struggling with to change and therefore create something new on my body and in my life.
Can you talk about a specific low point or struggle?
The first thing that I wanted to tell my mom - that was a really hard moment for me because I just immediately remembered that I couldn’t do that and that I would never be able to do that again. I thought of all the things going forward that would be really cool, that she would really love and appreciate, any book that she would love - I would never be able to tell her ever. I honestly think this was the hardest realization for me. I still have moments where I go through this all over again - from something as small as a show that she would love, to things as significant as getting married or getting diagnosed with Ehlers-Danlos Syndrome.
Some major struggles with the loss of my mom have actually been relatively recent - grief is funny that way….you can feel like you’ve mostly got it together about 3 years later and then BOOM something can kind of put you back in the grieving process and you feel like you’re going through the initial loss of a loved one all. over. again. For me, the things that caused me to grieve my mom again were major life events - my engagement/wedding and my diagnosis of Ehlers-Danlos Syndrome (a genetic connective tissue disease that I am fairly certain my mom had without knowing)…all of these life events were times when I could have REALLY used my mom. Sometimes there’s no substitution for being able to tell your mom about something going on in life that’s really difficult, hearing her say whatever mom wisdom she would lay down and then proceeding to get a huge mom hug and lots of mom snuggles and having her tell me that things will be okay. There’s some things in life where you just really feel like you need your mom.
Going through the wedding planning process and my wedding without my mom was absolutely a struggle. There was so much goodness about that whole day that I wish she could have been there to see, so many people I wish she could have met, and so many people that I know would have LOVED her. I will always feel something missing because I never got a chance to introduce my mom to Ari (my husband) because I know how much she would have loved him - how happy it would have made her to meet the person that has brought me so much happiness and joy. They would have been able to share recipes and kitchen tips and tricks with each other for hours - and I am still saddened that this won’t be able to happen.
Getting my diagnosis of EDS this past June. I wish I could tell her that the reason for her chronic joint pain and fatigue, and frequent injuries and bruises that happened extremely easily - was because she had EDS. I wish I could share my EDS life hacks with her and I really wish that I could hug her on the worst pain days and that we could talk about all of the struggles that come with the disease together.
How did you manage to find joy in those moments?
Henri - always always Henri. He knew when I needed him and he was there, snuggling with me and staying by my side. When I felt up for going out of the house but felt unsure, sad, or anxious I would go somewhere or do something where I could bring Henri with me - it helped a lot.
My dad has always been a huge help to me throughout my entire life, supporting me in the most difficult situations and my mom’s death was no exception - he was always available to talk on the phone and was ready to make a trip up to Michigan at the drop of a hat if I needed him. He’s always been my rock, and I am so thankful that I had him to talk me through and help me deal with my fears, frustrations, sadnesses, and all other emotions that come with grief. He’s always been there to support me whether it’s helping with the practical aspect of my problem or just be there to help comfort me when I’m upset and feel like the world is ending. My dad is the best, and I couldn’t have gotten through this without him.
My best friend Tiff is always a source of joy for me - she is the kindest, nicest, most caring, most genuine, sweet person I know. Tiff and I have been best friends since we were 2 and a half years old. When I lost my mom, Tiff lost a mom too, so I felt less alone because of that - we were both missing the same person, all of her specific traits that made her so special. I felt like I wasn’t an only child going through the loss of a parent alone because of Tiff. Her friendship has always been and will always be completely life changing for me.
During the time my mom was sick, Tiff was always there for me whether it was a marathon phone call on a particularly bad day, or even a last minute flight that brought her directly to me for all the Best Friend Time, she was always there in every way that she could be and that I needed her to. We would share funny childhood stories and memories about my mom (sharing stories and memories of loved ones has been an absolutely incredible and extremely valuable action that has been so healing and cathartic for me). I believe that continuing to talk about loved ones even after they have died is a way that we can keep them alive.
Although I may not have met Ari until years after my mom died, in the time that I have had the privilege of having him in my life, he has provided me with so much love, support, care and kindness when I’ve struggled with not having my mom around. He can tell instantly if there’s something wrong, and is there with love to help me get through it. Whether I need to be distracted, need a great laugh, need lots of snuggles, need someone to hold me while I cry - Ari is there and ready to do whatever I need. He is so incredibly supportive and loving that I can’t believe I am lucky enough to have him in my life. If my mom met him she’d be so impressed and thrilled. He also brings up my mom sometimes which, surprisingly has been really helpful to me - it can be something as seemingly small as him saying ‘oh wow, this looks like something your mom would have liked’ or him asking me about my mom (really anything about her), or him saying “I really wish I could have met your mom!” — it’s helpful and heartwarming every time and makes me feel like they have gotten a chance to meet and know each other. It’s the next best thing at least. Ari has given me so much support around the loss of my mom, and I couldn’t get through all the moments of grief without him.
How do you live life differently from before your mom’s death? Has your attitude about life shifted? Any unexpected changes?
I definitely try to actively enjoy every day a little more - or at least be aware of the fact that life is too short. I remind my self of how short life is when I can feel myself start to sweat the really small stuff - I don’t invalidate my feelings or anything, but I do remind myself that I only have X amount of energy and fucks to give, and that time moves so goddamn fast that before I realize it, it’s gonna be 10 years from now and it will have only felt like about a month at most. Gently reminding myself of this helps me to bring my focus back onto things that are TRULY important (people, connections with people, love, empathy).
I also changed careers - while my mom was sick I realized I wanted to learn how to code, so I quit my job and did a bootcamp. When my mom died I was just starting out my new career as an intern, brand new to the field. Now I’m settled at a job that I absolutely love, do work that inspires and fulfills me and have learned so much since I started out.
I moved to Detroit and finally really had the experience of having a place FEEL like home, not just be called ‘home. I got married to the love of my life. He makes me so fucking happy that I can’t even believe how happy I am capable of feeling and he treats me like a queen - and he can cook, something my mom would’ve been SO excited to hear
And finally, I got diagnosed with EDS - this is still a life event that I am actively wrestling with and working on making space for. I frequently wish I could talk to my mom about this disease and how it’s affecting me, hear about her similar experiences so I would feel less alone and gain some inspiration from her strength, hear her tell me to keep fighting even on the days when it feels impossible
What do you want others - those who haven’t experienced it yet or are early in the process - to know about grief?
Well, it’s gonna be really really fucking hard, and excruciatingly painful at times. It will be confusing, and may very well be the hardest thing you ever go through. That being said, each day it’ll start to get the teeniest tiniest smallest littlest bit easier to smile, feel joy, laugh - there’s going to be tons of ups and downs and it’s very unpredictable, but try your best to take it day by day without expectation. And be extremely kind to and patient with yourself - practice a lot of self compassion.
How can a person best be there to support a loved one who is grieving?
On practical and joy-centered ways to support someone: food is very helpful to have around in ready-to-eat or little-to-no-prep form (think rotisserie chicken, pizza, casserole, fresh salad). Whether that’s a gift card for a food delivery service or a store-bought or homemade meal that can be eaten for a week, is easy to prepare or is ready as is - easy is key!! Also, cleaning services, offers to help watch kids/pets to allow for time out of the house. Dropping off something that you know will bring them joy, whether that’s a book you know they’ll love or a cupcake. It’s not going to fix anything at all, but it’s a gesture of kindness and a flash of joy during a time of darkness - that’s a good thing to have while grieving.
On grieving & assumptions related to religion: This is a somewhat specific thing but — when offering words of support consider who you’re saying them to when choosing what to say - don’t assume the person is religious and give them a religious grieving book…idk if this is just me or not, but as an atheist, a christian grieving book does not do any good whatsoever and will absolutely irritate me and be of absolutely no help. (Also, I would say to avoid grieving books in general unless you check with the person grieving first). But yeah, don’t assume someone’s religion and get them religious based grieving material or say things like “she’s with god now.” Know your audience and read the goddamn room for Pete’s sake.
On things to say and not to say: I’d say try to avoid saying something like ‘everything happens for a reason’ or something like that — grief FUCKING SUCKS — it just does; sometimes when you’re grieving you just want to/need to go through that shitty grief and have someone make you feel validated and seen by allowing those grieving to have the space in a conversation/interaction to just say ‘this fucking sucks, and it’s horrible and I hate everything about it, and this is not fair,’ and to be allowed to feel that way without being basically told to ‘be positive’ more or less. Sometimes you just want someone to let you vent/cry/yell/do whatever you need to do and to listen and in response say ‘Goddamnit, you’re right - this is fucking awful - this fucking sucks, and I am so sorry. I’m here for you to support you however you want/need me to during this absolutely shitty as fuck time.’
What would you tell yourself if you could go back to the beginning of your pre-loss journey?
I would tell my pre-loss self ALLLLLLLL of the life updates that have happened so that I could tell it all to my mom - there’s so many things that happen on a daily basis that I wish I could tell her. Also, I’d tell myself to ask her about family medical history. I know that sounds silly and kind of cold, but there’s so many pieces of my health puzzle that would have been / would still be easier if I had known about some of that stuff. Also, make sure that if your loved one is still around that all of their final wishes, their estate and affairs, etc. are set up and in order - you don’t want to have to be scrambling around dealing with that stuff once they’re gone.
Oh yeah, and this:
Hang in there, baby. You’re in for a wild fucking ride, and it’s gonna suck at times more than anything has ever sucked before, but I PROMISE you’re going to come out ahead and it’s all going to be okay one day - slowly but surely. Treat yourself nicely.
Looking back, anything you would do differently?
More patience, spent more time with her
Done more fun things with her that weren’t related to going to doctors’ appointments. I wish I would have taken her to Detroit more and shown her around the city, Eastern Market, Greektown - all the things she’d mentioned she wanted to see.
Actually figured out what she wanted done with her ashes!
Encouraged CBD use for symptom management - educated myself on it more so I could accurately explain how it worked since she avoided it thinking it was psychoactive
What would you tell others who are going through something similar?
Cherish every single moment with your loved one. Practice a lot of self compassion and patience, and take it day by day. Most importantly, don’t self destruct - reach out for help if you need it. Know that you are not alone. Know that one day your heart will start to repair and mend - it will never ever ever be the same - it’ll have more scars and it’ll be tender, but it’ll feel less shattered and more alive over time. One day you’ll start to have good, happy days again. Also, there is no right way to grieve, it looks totally different for each of us.
Let’s talk about the guilt and shame. It seems unavoidable for some reason. Survival guilt, self care, etc. Do you experience that? In what way?
The dreams about whether or not she’s really dead - because I wasn’t there when my mom died, but I was the one responsible for making the decision about whether or not to take her off life support - I think there’s probably some complex, weird, unresolved feelings. I think it’s a lack of closure in some way. The last time I ever saw her was Mother’s Day of 2016. I have a suspicion that these recurring dreams are a manifestation of that feeling. I don’t have guilt about the fact that I wasn’t physically there with her or that I took her off life support, but I think the fact that this was all done from a distance planted some sort of seed in my mind that occasionally craves the closure that I didn’t quite get at the time of her death. It’s hard to explain and kind of strange - my brain knows she’s gone, but the other part of my brain still feels confused because I wasn’t there when it happened, so I think that confusion (that ends up being a slight lack of closure) manifests itself with these dreams. Thankfully they have lessened quite a bit over the years.
Also, the guilt over not being nice enough to her, not spending enough time with her while she was still alive - I don’t feel this one too much because luckily my reasoning brain knows there is no point in feeling guilt since I can’t change it, but I do occasionally feel a pang of guilt that manifests itself disguised as more of a longing/wishing feeling. Kind of like ‘oh I wish I would have taken my mom to the DIA - she would’ve loved it!’ - the feelings are more low key and not super harsh thankfully. I believe that I spent the time while my mom was sick preparing myself for/dealing with feelings of guilt, and was able to process some of it and make peace with it before she died. This is just my theory, but I do spend a lotttttttt of time in my own head, so I know it pretty well.
Any resources that were helpful for you that others might be able to utilize?
My Favorite Murder podcast - a true crime comedy podcast…this might not be for everybody, but if you have any interest in true crime I highly recommend this podcast. It makes death and sad things easier to digest and cope with thanks to the humor aspect. Also, reach out to people you know who have been through something similar - I was surprised how much it helped for me to talk to other people who have lost a parent, even if I didn’t know that person very well, or hadn’t ever been super close with them. All the people that you love and love you - all the people that make you feel any bit of goodness, happiness, strength, inspiration - utilize those people as much as you can, whether it’s collaborating with them on a project, spending time with them — doesn’t matter, try and use the people around you as a support system if it serves you
What brings you joy now?
Henri and Ari bring me so much joy that I’m constantly surprised at how happy I am capable of feeling. Weekly talks on the phone with my Dad. Family, work, long, silly, meandering, belly-laugh-filled talks on the phone with Tiff. Can’t forget dessert. I love all the desserts - also all the foods. Restaurants!
Cannabis - it helps me with so much — managing the symptoms of my EDS, changing my perspective through altering my state of consciousness, quieting the noise in my head so I can hear the thoughts and ideas that I’m having a hard time hearing. It allows me to quiet the noise and extra stuff in my head so I can find and feel the joy that I know is there but just having a hard time being heard.
Anything else you’d like readers to know?
Love yourself, be kind to yourself, be patient with yourself. You’ve got this.