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LIAM: LIVING WITH DEPERSONALIZATION

Melissa: Hi! Thank you for agreeing to be part of this project!! Do you mind sharing the name you picked for your interview? I’m choosing to, across the board, change names of all participants. 

Liam: I picked Liam

Melissa: How long have we known each other?

Liam: A long time!

Melissa: Have you had an experience or experiences which lead you to wonder if there were other people “out there” like you? 

Liam: I have spent more than half my life having on and off episodes of depression and depersonalization. Major depressive disorder affects over 16 million adults each year in the U.S. and many of us know what it’s like by experiencing it themselves or because it affected someone they know. However, far fewer people know what depersonalization is. I’ve experienced 3 depersonalization episodes in my life, although it took a while to figure out what it was that I was experiencing which definitely made me wonder if there was anyone else out there experiencing the same thing I was.

It took me a long time to put into worlds how to describe to other people what depersonalization feels like, especially since it can change in how it presents itself over time. For me, it also changes in its severity depending on whether I find a medication that is helping me. At its worst, it feels like you’re in a dream or that nothing around you is real, almost as if you’re living in a simulation. Not only is this completely terrifying, but no one around you can possibly imagine the nightmare you’re experiencing in your own mind. I have never done any heavy drugs, but I would imagine it would feel like an LSD trip gone wrong, and instead of it lasting a few hours, it can last your whole life.

Melissa: Can you give us a brief overview of your experience or situation? Did you feel isolated at all? Or did you have a sense someone else might have a similar experience?

Liam: The first time that I experienced depersonalization was in high school when I smoked marijuana for the first time. Everyone convinced me that it was this amazing thing I had to try and that it had no side effects other than maybe make you want to eat everything in your kitchen and giggle uncontrollably. Sounded pretty good to me. That was, until I started to feel high and everything around me felt like it was slipping away and felt dream-like, but not in a good way. Internally, I was freaking out, but I decided to try and sleep it off. Except when I woke up the next day, I didn’t feel like my normal self again. My perception of everything around me was all messed up. I felt like I was still high. After 3 days, I really started to panic. I was afraid to tell my parents that I smoked pot and telling friends at school was not helpful either. I remember telling one friend that I had smoked the previous week and it felt like the high never went away. He looked at me completely serious and said “You’re so lucky”. I told another friend that I still felt “weird” and maybe the pot I smoked was laced with something more intense. He just told me that I sounded crazy and I was just being paranoid. Then why did I feel so weird? It had to have been the pot – I felt fine before I smoked it. But other people smoked it with me – why are they perfectly normal? That was my junior year of high school and I honestly don’t remember how I made it through the rest of the year. I do remember stupidly thinking that if pot got me this way in the first place, then maybe pot could reverse it. So, I got high again. That obviously didn’t work. I think I just spent the rest of the school year being miserable and not knowing what to do.

When you have depersonalization, you think about it every second of every day. That’s not an exaggeration. And you can’t control it either. You can’t simply “stop thinking about it”. But by some miracle, it eventually did go away. Until it hit again my junior year of college. But this time it came with depression too. I wasn’t diagnosed with depersonalization until I told my doctor that I was fairly certain that’s what I had after I was on the internet one night researching my symptoms and came across other people describing what I was going through. Surprisingly, many of them talked about how they got that way from smoking pot or getting depressed too. It was somewhat of a relief to find that there are other people similar to me.

Unfortunately, depersonalization is a very complicated thing and there is no medication that works for everyone. Luckily, through the help of some good psychiatrists and some research of my own, I was able to find something that helped my symptoms subside.

Melissa: What do you think has been most helpful in terms of advocating for yourself and treatment? 

Liam: Don’t settle. If you tell your family, friends, or doctor that you’re feeling “70% better” and they say that you’ll be fine, you can live with that, don’t settle for that. I also believe because depersonalization is somewhat uncommon, a lot of doctors aren’t as familiar with it, at least based on my experiences. I think for myself it was helpful to do my own research on the disorder and bring that information to the table when speaking with doctors.

Melissa: What do you think has been least helpful in terms of getting support? 

Liam: People have always told me that I had “inner demons” that I needed to confront and that’s why my depression lasted as long as it did. I listened to them and tried to figure out if there was some trauma or something in my life that I was not addressing. I ended up seeing about 6 different therapists and did an outpatient program for people who have debilitating mental health issues which is interrupting their ability to function normally in life. Unfortunately, none of that helped, but I was able to a very helpful psychiatrist who helped get my life back on track. I have a tremendous respect for social workers and therapists and I believe their work is invaluable for some people. But for me personally, seeing therapist after therapist because people said there was something wrong with me that I didn’t recognize was not helpful. I believe that some people can get depression without any life factors being a cause, and science has suggested that genetics can possibly play a part in that.

Melissa: What have you learned from your experience? 

Liam: I learned not to take my health for granted. I am so grateful to have found something that worked for me to allow me to feel like myself again and I hope no one has to experience what I went through.

Melissa: What do you want to share with people who have had similar experiences to you?

Liam: I want people to know that there are other people experiencing the same thing as them and there is hope. Depersonalization, just like depression is a very complicated disorder and there isn’t one solution or one pill that will work for everyone. What worked for me will not work for everyone.

A resource that I found helpful which I am not affiliated with is http://www.dpselfhelp.com. There are hundreds of people on there talking about their experiences: how they feel, what has helped them cope with the disorder, etc.

Melissa: Any closing thoughts? 

Liam: I think that no matter how bad things get, no matter how awful you feel and you feel like you can’t go on any longer, you need to reach out to someone you can trust. I also think you need to find that one thing that will keep you going, whether it be a loved one or your children, etc. Just know that you aren’t going to feel this way forever and you are more valuable to a lot more people than you think you are.

Resources:

https://www.dpselfhelp.com/forum/

National Alliance on Mental Illness: Dissociative Disorders

Psychology Today: Life with Depersonalization

MINDFUL MOMENT

Marriage is humbling. As victorious and bulletproof as you can feel as a couple at times, there are always unforeseen market corrections ahead. And the only way I know to crawl out of a marital crisis is by being as vulnerable and as honest as possible. …try as hard as you can to feel grateful for where you two have just landed. This is exactly where you need to be.

-Heather Havrilesky, Ask Polly on marriage

SHARON: POST PARTUM DEPRESSION AND ANXIETY

Melissa: Do you mind sharing the name you picked for your interview? I’m choosing to, across the board, change names of all participants.

Sharon: I picked Sharon.

Melissa: Welcome aboard, Sharon. How long have we known each other?

Sharon: 6 years; can you believe it?

Melissa: I actually can’t believe it! It honestly feels like 100 years! I assume it feels like longer because we are both old souls. Okay, are you ready?Let’s get started. Have you had an experience or experiences which lead you to wonder if there were other people “out there” like you?

Sharon: Yes, being the only “new mom” without a support network was very difficult.

Melissa: Did you feel isolated at all? Or did you have a sense someone else might have a similar experience?

Sharon: I was very isolated. I knew there were other people out there that must have been experiencing something similar, but I didn’t know how to find them. I eventually connected with strangers on Facebook, but that was really the only group that understood what I was going through.

Melissa: That’s really interesting because a few other people have mentioned to me that strangers on Facebook have actually ended up being really meaningful connections to them. There are some serious upsides to social media, I think. Where do you want to start? Can you give us a brief overview of your experience or situation before we “dig in” further?

Sharon: The entire process of having my daughter was isolating. I lived in Chicago for several years prior to getting pregnant, so there was no real family support during fertility treatments and doctor appointments. I went through fertility treatments for two years, which is something none of my friends had ever experienced. There really wasn’t anyone to talk to about it. Friends were as supportive as they could be, but trying to explain the procedures and the weekly blood draws, the shots, etc. It was just something they had not experienced. When my daughter was born, it was just my husband [at the time] and I to manage with her on our own. The first three months of her life were traumatic for me. I was unable to breastfeed. The hospital was “baby friendly,” so that was very shameful experience.

Melissa: I’ve heard consistently from women that they felt incredibly judged if they were unable to or chose not to breastfeed. Wow, so you were unable to breastfeed and alone; what happened next?

Sharon: Because I was unable to feed her, my daughter ended up in the NICU for a week. The worry and anxiety that comes with new mom hormones and a baby in the NICU is almost indescribable. When she finally came home, I was pretty much on my own. My husband at the time returned to work and was working 12+ hours per day. I was alone with my daughter, just her and I, for basically three months until I returned to work. It was very, very isolating, despite visits from a couple of friends. Most of my friends were not comfortable with kids, so no one was able to babysit or watch her while I took a nap or shower.

Melissa: I can imagine being alone without any family or friends to step in had to be incredibly isolating. What happened next?

Sharon: I just took care of my baby. I guess you just do what you have to do. I developed incredibly severe postpartum depression. I would actually hallucinate my baby crying when she wasn’t. I’ve never experienced anything like that before. For a year, I was basically a single mom. I would get up, get dressed, get my daughter to daycare, go to work, pick her up from daycare, feed her, play with her, bathe her and then put her to bed. She had a lot of sleep issues and wouldn’t sleep more than an hour at a time some nights. I would always get up with her. Looking back, I’m actually not sure how I did it. I lost about 30 lbs from stress. It wasn’t good. After a year, my ex husband lost his job, again. We moved back to Michigan where we had family to help. My parents have been tremendously helpful. It made a world of difference. I’m doing much better.

Melissa: You mentioned being anxious, as well as severe postpartum depression due to being a new mom. Can you tell me a little more about how you began to cope with your postpartum? Of course, we can’t know full statistics due to inconsistent sampling, but it is reported that 70-80% of woman experience, at minimum, “baby blues” and 1 in 7 people experience a full depressive episode (postpartum.org).

Sharon: Honestly, I think I didn’t cope with it and [didn’t think it] was a big problem. Even at my 6 week postpartum follow-up appointment, no one took the time to ask how I was *actually* doing. I was so stressed about all of the things you “have” to do with a new baby, that I was totally overwhelmed and just trying to get myself showered was an impossible task sometimes. If I would shower three times a week, it was a really good week. I worried about everything. I worried about not being able to breastfeed and about not reading enough books to her (seriously…even when she was 2 months old). I worried about not playing with her enough (how do you even play with a 4 week old!?). I worried about not getting the chores done. I don’t think anyone actually expressed any concern until I weighed about 30lbs less than before I had my daughter. Looking back at pictures now, it’s pretty disturbing. At that point, I stayed with my parents for two weeks and they helped me take care of my new baby. My husband at the time stayed in Chicago. I did find things got a bit better for me once I got back to work and had a routine. It also helped having my work friends around me, since they were the best support I had at the time. Once I got back to work and gained a little positive momentum, I started seeing a psychiatrist and got on some antidepressants. They helped tremendously.

Melissa: Can you tell me more about your experience with anxiety. How long have you been dealing with anxiety? I often ask people if they would describe themselves as “worriers” and many people with generalized anxiety quickly say yes, they can’t really remember a time that was completely anxiety free.

Sharon: I remember having anxiety since 6th grade. I had a very intense English teacher and for some reason she flipped the “worry switch” that runs in my family. Prior to that, I don’t remember worrying about much, or anything at all really. I think I am predisposed to be a “worrier,” but have done a lot of personal work to manage it. I try to be very mindful of things I can and cannot control. This has been especially helpful during my recent divorce.

Melissa: I think it’s also important to discuss that, while anxiety can ebb and flow for people, it’s also highly treatable. I don’t promise “anxiety free” to clients, but I try and help get it to a very reasonable baseline where it isn’t a daily part of your life. Have you been able to experience that as well?

Sharon: Yes. Trying to slow down and live in the moment has been tremendously helpful. I find this especially with my daughter. I try and mimic how she lives her life. She’s only two and everything is moment to moment. She can be terribly upset and hysterical one minute. Thirty seconds later, she’s happy and has already forgotten about whatever upset her. It seems blissful. My best friend lost her mom 2.5 years ago. She’s definitely taught me that time is the most valuable thing I can give my daughter. When I’m with her, I try to focus on what we’re doing, whether that’s watching youtube videos of cats popping balloons or playing with barbies. Being in the moment with her helps my anxiety and makes me feel happy.

Melissa: Are there times your anxiety has been worse than other times?

Sharon: Definitely. When I’m trying to make a big decision, or sometimes even a little one, I notice my anxiety flares up. Whether it was, “Should I file for divorce?” or “Which dry cat food should I switch my cats to?” (I’m totally serious). I think there is a lot to be said about anxiety and confidence. I spend a lot of time searching for information when my anxiety is high. Learning to trust yourself is difficult.

Melissa: Oh yes, I think anxiety and intuition can run parallel and it can be hard to separate anxiety from your intuition and learning to trust yourself. What has built up your confidence and reduced your anxiety over time?

Sharon: I think looking back and reflecting on all of the things I’ve “gotten through” before. Every time I didn’t think I could do it, I did, and I’m still here. I think also getting older and caring less about what other people think helps, too. You just do what you have to do. Eventually, after so many ups and downs, I’ve learned that every really tough time passes.

Melissa: Also yes, small things, little things, huge things, it doesn’t matter. When anxiety flares up, it doesn’t discriminate- anything can feel huge and overwhelming.

Sharon: Absolutely! And I find when I’m anxious in one area of my life, it seems to seep into every other area as well. It’s like an infection that keeps spreading. The thing I’ve tried to teach myself is to get to the root of the problem instead of just treating the “symptoms.”

Melissa: Are there times your anxiety has been better than other times?

Sharon: When I’m with people I love and I feel supported, my anxiety is much lower. I recently started dating someone that makes me feel safe letting go a bit. I don’t feel like I have to be in control of everything when we’re together. It’s nice to have someone you can rely on and that helps without asking.

Melissa: That makes me so happy to hear. Does he know about your anxiety? And if so, how does he deal with it? Partners can be good anchors.

Sharon: I’ve known him for a very long time, so he is aware of what I’ve gone through. He’s just now learning the extent of everything and he is very supportive. It’s a huge confident boost to have someone say, “Wow, I can’t imagine. I don’t know how you did it.” I think that’s a great thing people can say to provide support. He also has anxiety about various things, so he gets that sometimes the way I’m feeling doesn’t always make sense. That’s very helpful too, so we help each other through it.

Melissa: Do you experience your anxiety mentally, physically, or both?

Sharon: Definitely both. Mentally, my mind speeds up. It’s like my thoughts are train cars running together. Physically, my stomach hurts. I feel short of breath. Sometimes I get migraines.

Melissa: What advice would you give to someone dealing with general anxiety?

Sharon: Focus on what you can control. Try to identify your triggers and work with them, not against them. My favorite metaphor was actually told to me by a friend (um… yes, you, Melissa). It’s like if you have a ball in a swimming pool. The harder you try to push it under the water, the more it will try to pop back up. If you just let it float around in the pool, it won’t be such a struggle…or something like that.

Melissa: Ha, yes, I do LOVE a good metaphor. But yes, anxiety is unique in that anxiety can bring on more anxiety and then you get anxious about being anxious. It’s a vicious cycle. Learning to float alongside the ball and eventually letting it float away is a very liberating process- sometimes easier said than done, of course! What has your anxiety taught you?

Sharon: Most things I’m anxious about don’t really matter. The brain is a silly thing that gets worked up about nothing sometimes.

Melissa: I’ve read some interesting studies that roughly 80-90% of what we worry about doesn’t ever come to fruition (Leahy, 2005). While I believe that was one study, it does actually sound about right- even anecdotally. 

A lot of people with anxiety are also natural empaths. Do you find that to be true? If so, why do you think that is?

Sharon: I’m a social worker, how could I not be 🙂  I think people with anxiety feel more fully, perhaps? I think they can really feel the consequences of what may and may not happen, which is what makes them anxious.

Melissa: I could talk about empathy, anxiety and brain science forever! There’s some compelling data about that, too. I’m a real science therapy nerd, clearly. I’ll include some links at the bottom of the interview! What have you learned from your experience?

Sharon: I reach out to all of my friends that have new babies and have a “be real with me, how are you really doing?” conversation. There’s too much shame about “not liking” motherhood. The first three months were awful for me and most people are shocked to hear that because “how could you be unhappy when you have a beautiful new baby????!!!” Eye roll.

Melissa: What do you want to share with people who have had similar experiences to you?

Sharon: You’re not crazy. The system is broken and you need to make your own support networks. Be vocal. Ask for help. Be direct.

Melissa: What do you want to share with people who have not had similar experiences, but might want to know how to help out someone in their life who is facing a similar situation?

Sharon: Even if you don’t like babies, just pretend you do. Go visit a new mom. It’s very lonely.

Melissa: How do you think people should approach visiting a new mom? I think some people feel concerned about boundaries and/or inviting themselves and/or are told that the mom isn’t up for visitors.

Sharon: I think they just should ask the new mom themselves. People seem to imagine all of these strange boundaries that society has created, but no one asks the mom what she wants. Tell her you don’t care what the house looks like, you don’t care what she looks like. You want to spend time with her baby while she takes a hot shower and a two hour nap. Or ask if she wants to spend time with her baby and do a load of laundry for her. I think people forget that a whole village used to raise a baby, so there were always people to help with things that were both child and non-child related. And be flexible. Babies have weird schedules.

Melissa: As you’ve grown over the years, what would you have said to your young self now looking back?

Sharon: I would say, “hey listen, you’re doing a great job.” Don’t put so much pressure on yourself. So what if you can’t breastfeed? Anyone that tells you anything other than ‘fed is best’ can f* off. And don’t worry about playing with the kid right now. She can’t even see colors. Seriously. Don’t worry about the chores. [Ask] your husband do something. ANYTHING. Demand help. It’s okay to ask for what you need because you deserve more than you are getting. 

Take care of yourself because that’s what this little baby needs the most. She needs you to shower and eat and take a few minutes a day for yourself. Go for a walk, breathe fresh air. Do one small thing today to make yourself feel better. Tomorrow do two small things and keep building on it. It won’t be like this forever. Things are really hard right now but you’ve got this. You’ll get through this because you’ve gotten through everything else up to this point. You can do this, you already are. And all of this hard stuff right now, it will be worth it. This little girl will be the single greatest thing you’ve ever done in your entire life. Take care of yourself because you are the center of her whole world and she’s gonna need you in good shape for the next 60 years.

Citation:
R. L. Leahy, The worry cure: seven steps to stop worry from stopping you. New York: Three Rivers Press, 2005.

Resources:

“Postpartum Depression Statistics,” PostpartumDepression.org. [Online]. Available: https://www.postpartumdepression.org/resources/statistics/. [Accessed: 21-Aug-2018].

S. Remsberg, “What No One Tells You About Not Being Able to Breastfeed,” The Cut, 23-May-2018. [Online]. Available: https://www.thecut.com/2018/05/the-truth-about-not-being-able-to-breastfeed.html. [Accessed: 21-Aug-2018].

Tibi-Elhanany, Y., & Shamay-Tsoory, S. G. (n.d.). Social cognition in social anxiety: First evidence for increased empathic abilities. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/22120444

ARYA: IMPOSTER SYNDROME, LIFE AS A SURGEON, AND MODERN DATING

Melissa: Hi! Thank you for agreeing to be interviewed. Do you mind sharing the name you picked for your interview? I’m choosing to, across the board, change names of all participants. 

Arya: Arya

Melissa: How long have we known each other? 

Arya: 14 years!!!

Melissa: It’s amazing how truly quickly time flies!

Have you had an experience or experiences which lead you to wonder if there were other people “out there” like you? 

Arya: I think I’ve probably had several experiences, both professionally and personally, where I wondered if other people were going through similar experiences. 

Professionally as a female surgeon, I’ve definitely suffered from imposter syndrome.  And as much as you read about it these days, I still find myself wondering if others, especially women, doubt themselves professionally as much as I do.   

Personally, I’ve struggled with dating, likely partly due to my profession and partly due to my expectations in a partner in this new era of dating apps that does not seem to value compassion and thoughtfulness.

Melissa: I think imposter syndrome is very real for everyone, especially for many women. Regardless of how many years we’ve been educated or how much experience we have, self doubt can really creep in and then the “negative self talk” can really kick in. I talk a lot about reframing at work (focusing on facts, not thoughts), and find while it’s straight forward in theory, it’s really hard in practice.

Have you felt isolated at all throughout your training and in your personal life? Or have you had you have a sense someone else might have a similar experience?

Arya: Luckily I have some great professional role models and have been part of some great organizations for women that helps me feel less isolated in my “imposter syndrome” feelings. I probably feel a bit more isolated in my personal life as I get older and more people pair off.  Also, a lot of my friends who married younger don’t seem to understand this current era of dating apps and the struggles that come with it.

Melissa: Modern dating is really, really tough. The apps, in particular, seem to give off a vibe that a human isn’t attached to the other end of communications and interactions. “Ghosting” is particularly upsetting and hurtful, among many other facets of dating these days. 

Can you also give me a sense of what it’s like to date, given how often you work? Particularly, with the crazy hours you work. I guess I should also ask what your general hours are like?

Arya: My hours can be kinda tough, generally working 6 days a week for about 80 hours with 24 hour shifts scattered throughout.  For most of my training it was rare that I had a full weekend off and I could never control my schedule or predict if I’d actually be out of work on time to go on a date. And if I did get out on time, it was hard to muster the energy to change into nice clothes, do my hair and makeup, and have a conversation with a complete stranger. I often felt like I was the one putting in more effort, as well, which got exhausting after many failed dating attempts.

Melissa: It’s hard to keep the optimism going after a lot of “failed” attempts at “getting out there.” I like the idea of cautious optimism, but even that can be really challenging when you feel like it’s just first date after first date, if it even gets to that point. That being said, there’s always that idea of the “open door,” which, to me, means you’re open to the idea of finding someone and there’s some level of hope in there! 

 Is there any other job you could see yourself doing?

Arya: I love food so probably something in the food industry, although not a chef.

Melissa: I could see that! 

What’s it like often being the only female in the room at your job?

Arya: There are a lot of feelings that come with being the only female in the room in surgery.  Luckily, it is becoming less frequent these days but there are still surgical fields that are very male dominated.  It is both intimidating yet empowering. 

I think throughout my whole life I have often put myself in situations where I was the only girl in the room. I was the only girl on several soccer teams growing up and I remember the boys snickering, “Wwwwww they have a girl on their team.” That just made me more determined to win and I may have thrown a few elbows their way too. In school, I was often the lone girl in the more advanced classes with the boys and loved when I outsmarted them in class.

Now I think I look at it more of a collaborative approach.  We need men in the professional setting to be on our side and promote us or else women will not advance.

Melissa: I love that idea of a collaborative approach. 

Do you think your age and stature also make difference? For those that don’t know you, you are young and petite!

Arya: Definitely! Most people in the hospital assume I’m a nurse because I’m female and look young.  It’s a bit discouraging to hear every single day and even more discouraging when people look to my male junior residents and medical students for the plan when I am the one examining them and talking to them.

Melissa: What do you think would move the “cause” forward for female surgeons?

Arya: I think the world of surgery is slowly improving for female surgeons. There have been social media movements like #ILookLikeASurgeon which have brought attention to the matter of female surgeons often not getting recognized as surgeons.  There have been many articles published about female surgeons being underrepresented in surgery leadership.  There has also has been more of an emphasis of “work-life balance/integration” for not only women, but for men too. I think when you make those types of issues important to men, they get in on the cause which can only help.

Melissa: Have you had particularly low points throughout your training?

Arya: There were definitely a few times where there was an intersection between difficult issues personally and professionally which made for some of my lowest points. When you add minimal sleep or free time to that situation, it just makes it harder. Luckily I had some great friends to help me through and time often improves a lot of situations.  We also, in my program, take two years “off” in the middle of our training to do research which is a much nicer schedule and gave me a lot of time to reflect on what was important to me in my surgical career.

Melissa: Have you had particularly high points throughout your training? 

Arya: Definitely or I wouldn’t still be doing it! High points were performing well at a difficult operation, saving a patient’s life, and connecting with my patients.  A lot of people think that surgeons don’t really talk to their patients much but we usually see them twice a day and sometimes my favorite part of the day was the slow afternoons when I got to spend extra time talking to and getting to know my patients.

Melissa: What do you think is the cause for imposter syndrome and what can be done to improve it?

Arya: I think that it is something that is ingrained in our society.  I can’t quite explain how but I think through TV shows, movies, social media, magazines, somehow this notion that we as women aren’t good enough or smart enough gets seared into us. Traditional gender roles are still a large part of our society and biases all of us.  I think we are slowly trying to break the mold but it takes time.

Melissa: Onwards and upwards!

Resources:

You can read more about coping with and tips for managing imposter syndrome here. You can learn more about the amazing ‘I Look Like a Surgeon’ campaign here. Lastly, one of my personal favorite advice columnists Heather Havrilesky, aka Ask Polly, has great feedback in this area, among many other areas.

SAM: ALS

Melissa: Hi! Thank you for agreeing to be interviewed. Do you mind sharing the name you picked for your interview? I’m choosing to, across the board, change names of all participants. 

Sam: I’m choosing Sam.

Melissa: How long have we known each other?

Sam: We have known each other for a little over ONE YEAR!!

Melissa: You’re right and I can honestly say I’m a better person for it! Alright, let’s get started. Have you had an experience or experiences which lead you to wonder if there were other people “out there” like you? 

Sam: I know that there are many other patients who also have ALS. However, because of my years of practicing as a physician, I also know that no two patients are completely alike. We all have a unique bio-psycho-social context in which we experience our illness. That makes each person truly unique. That said, we also likely share many experiences with a variety of other patients – from terminally ill patients to patients living with a physical disability. I do wonder if other patients with ALS feel like I do, or have the same questions, or experiences that I have had. 

I think the one experience that haunts my thinking about ALS is knowing how I am going to die. It’s anxiety provoking to know what life has in store for you and what is going to happen as time progresses. I think knowing that is just as difficult as not knowing. And, I do wonder if other patients with ALS have anxiety and worry about what the end is going to be like? Is it going to be painful, who will be around me, and will I suffer?

Melissa: I think anyone facing a terminal or degenerative illness wonders the exact same thing. How could you not? In fact, I recently read that even being around those who are facing their mortality brings to mind our own mortality, and I agree with that. 

In this part of your life, do you feel isolated at all? Or do you have a sense someone else might have a similar experience?

Sam: Absolutely I feel isolated! But I am not sure isolated is quite the right word. It’s more of a feeling of being alone. The difference I see is that I know there are other patients with ALS. I have gotten to spend time with other ALS patients during patient advocacy events in Washington, DC. I also know, for example, that there are roughly 700 patients living with ALS in the greater Chicago Area. And, there are opportunities to meet with others at support groups. 

So, I don’t feel necessarily isolated. However, I do very much feel alone. I have found ALS to be an extremely lonely illness. 

Here’s my take on “why” ALS is so lonely. When you are diagnosed, many people surface from your life and express their empathy for your diagnosis. So for the first few months, you don’t quite feel alone. However, that doesn’t last for long and soon you find yourself constantly thinking about your ALS. It never leaves you alone. Every muscle twitch, every step you take, and every move you make (wait – that sounds too much like a “Police” song), and every time you go do some kind of activity, you wonder if this is going to be the last time you can do that particular thing. You are hyperaware of your physical condition. 

And I cannot fully describe the sense of urgency one feels to cram in everything one has wanted to do or experience, but hasn’t yet had the chance. The difficulty is compounded by the experience that no one wants to talk about your ALS with you, as its too uncomfortable. And no one shares your sense of urgency to cram every last bit of living into your life while you can. So, that leaves you feeling extremely alone in your thoughts, feelings and activities. There is no where to hide or runaway from your thoughts and feelings. They are with you all the time, and that accentuates the feeling of being completely alone.

I wasn’t prepared for how lonely this illness experience has been thus far. Then, as you deteriorate physically, and start to use assistive devices, like a wheelchair, you experience a different kind of loneliness from the rest of society. As a disabled person, I have come to experience and learn you are on the fringe of society. Yes, there are adaptive considerations – such as parking spots, ramps, elevators etc… But, at a social outing, you are usually alone in a corner somewhere, because you cannot stand, or it’s too crowded to navigate a wheelchair, or you simply aren’t seen as you are not standing at eye level. This disability experience further adds to the feelings of being alone.

Melissa: That’s really powerful; thank you for being so candid. I think when you’re not in the position of using an assistive device, you simply may not consider what it might be like for someone who is, nor would you necessarily fully understand. 

I want to keep my commentary to a minimum here because I want to give you full space to continue with your own words. So, where do you want to start? Can you give us a brief overview of your experience or situation before we “dig in” further?

Sam: In summer of 2015, I was late for a meeting at work, and went to run to my car. But, I couldn’t! My right leg wouldn’t move quickly, and I felt like I was going to trip and fall over. Being a physician, I immediately thought, “I have a painless weakness in my leg and I am in my mid 40s. I must have ALS.” I immediately called my wife, and said “I think I have ALS.” 

Of course, no one believes you and everyone, including all my many physician co-workers all tried to tell me it wasn’t ALS. So I went along. I started by going to the Emergency Room the next day, and I was admitted for a MRI of my back. I was told that I have degenerative disc disease and I needed to see a neurosurgeon. BUT, I was NEVER, and I seriously mean never, had a proper physical exam, and never had a neurological exam during my 24 hours in the hospital. This was extremely concerning. But, I still went along, and saw the neurosurgeon in less than a week after I was discharged.  The neurosurgeon spent about 5 minutes listening to my history, and did a very scant neurological exam, and tells me my signs don’t fully explain my symptoms, but we might as well move forward with a hemi-laminectomy (back surgery) and he booked it for the following week. I left the office kind of bewildered that still not a single physician has really listened to my history, nor have they performed a proper neurological exam, and I am already booked for back surgery. [Additionally], the neurosurgeon told me that my symptoms are not fully explained by the MRI findings. So, I started to take matters into my own hands and sought a second opinion. 

I saw an orthopedic surgeon and he was excellent. He finally did what no one else had thus far: he took a very thorough history and physical exam and informed me he thought that I did not have a surgical problem. He immediately facilitated a consultation with a neurologist. And then, the full diagnostic process began. ALS is most often a diagnosis of exclusion, meaning you have to first rule out many other potential diseases that it could be. After about 4 months of investigations, and follow-up, I finally received the diagnosis of ALS in December 2015. That is when my journey with ALS fully began…

In short, I was a 46 year old man, married for 21 years, and 2 children, ages 18 and 16 at the time of my diagnosis. I was a vice president in a pharmaceutical company and had an excellent career. Those who know me would describe me as an active athlete who loves to participate in action sports. I was estranged from my parents and sibling for the last nine years; my immediate support network were my immediate family, friends and colleagues.

Melissa: It’s staggering to me how many people have said that they knew immediately, or at the very least, had a strong idea of their ALS diagnosis prior to receiving it. I also regularly hear from clients that they were seen by a lot of professionals prior to diagnosis, for a variety of reasons. What initial thoughts went through your head when you heard about your diagnosis? 

Sam: When I was initially told I had ALS, I thought to myself, “I knew it.” I was right all along. I saw it in the non-verbal communication from the Orthopedic Surgeon I saw in September 2015, and then in the non-verbal communication of the neurologist that initially diagnosed me in December 2015. Because I was a physician, and knew about ALS. I learned that the physicians taking care of you really cannot hide their non-verbal communication. I could see the look on their faces; they were going through the process of ruling out other potential diagnoses, but somehow I knew we were going to end up with ALS. Because it wasn’t a surprise to me, I feel like I was somewhat prepared for the diagnosis as I had suspected this all along. 

So, for me, given my personality, I immediately went into a logical cope mode where I started to take care of all the items I knew we needed to start dealing with. For example, In September 2015, months before officially being diagnosed, we sought an estate planning attorney and we redid our wills, powers of attorney and estate plans. We then listed our house for sale because it was not going to be manageable living with ALS [in our former house]. Again, this was all prior to even being diagnosed.

Next, were all the people we needed to tell. We told the kids over Christmas break. [Next were] family, friends, and then I told my employer. I was already having trouble working and figured we needed to plan for disability insurance and stopping work. For the next few months, I focused on winding down my big projects and operationalizing a transition plan expecting to stop working in the near future. I eventually went on medical leave starting April 2016.

What followed, I was never prepared for: the process of initiating disability and social security disability claims. This was an all consuming process that took literally hundreds of hours of work, and relentless calling for follow-up. I quickly learned that insurance companies try to find any way possible to delay or initially deny a claim. 

When you are dealing with a terminal illness diagnosis, one which can progress quickly, I was so frustrated and appalled by the healthcare and insurance systems. I had to be a strong and relentless advocate, and also needed to hire a disability attorney for assistance. Many many months later, I finally was issued a successful claim for disability insurance policies and social security disability. Despite that, months of delays in issuing payments were then experienced, and again, I found myself constantly on the phone and running down the delayed payments. That situation occurred two additional times over the last two years. Despite a successful claim, one then has to ensure your payments are correctly being made on time. It’s a very discouraging process and system, and makes you certainly want to just give up. Everything was a substantial challenge. But, It did keep me very busy and distracted from actually really dealing with the fact that I had ALS and was slowly progressing.

Melissa: The amount of follow-up and paperwork people have to endure has always been disheartening, and at times, despicable to me. It can be very dehumanizing to feel like a cog in a machine. We used to say at the hospital, when I worked there, that we got a Master’s degree in working through systems and filing paperwork with families. It’s honestly that complex. After all the paperwork and logistics, can you tell me what you think the emotional process has been and where you are now? 

Sam: For roughly the first year, I was completely consumed in getting things done. I needed to transition to stop working. We needed to sell our house, and purchase an adaptive friendly house. We needed to have a future financial plan with the impact of being on disability. We needed to get our  “affairs” in order regarding accounts, passwords, access, finances, estate plan, wills, powers of attorney, advance directives. It was a lot to deal with and we had several complications with the purchasing of a new house and [subsequent] renovations. Because I was so busy and preoccupied/focused on these tasks, I don’t think I really emotionally dealt with having ALS for about the first year after diagnosis.

When all of the above tasks were completed, I was hit by a brick wall emotionally trying to cope with the diagnosis. That’s when I started to spend some time and effort on this aspect of living with the disease and accepted counseling services. 

I felt like I had something to contribute to the ALS community being a neuroscience physician and being in the pharmaceutical business. So I tried to initially cope by getting somewhat involved in patient advocacy, and fundraising. However, I found that I wasn’t ready to spend time that way. Instead, I wanted to focus on family, friends, myself and doing the things I still want to do, while I [still] can.

Currently, I am struggling – as the disease progresses – though slowly – in coming to terms with the fact that I have ALS. I fear the future. I fear that I will suffer. I fear being completely alone and not being able to communicate effectively. I fear being completely dependent on others. I fear being vulnerable and helpless. The fear that the process of dying will take a long time. I fear being quickly forgotten. I feel like “my person” or “who I am” will be gone far before physically being gone. I feel like at times I am just waiting for the end to come. My emotions now are all over the place. Fear, anxiety, loneliness, and sadness are the predominant emotions on any given day. But, I do try to engage in activities I can still participate in, and I try to keep busy – likely as a way of avoiding actually dealing with the emotions right now.

Melissa: Can you tell me how you think your immediate family copes?

Sam: My immediate family all cope in their own ways from my observations. My comments here are simply my observations. My wife copes silently and just tries not to think about it. She plugs along taking on additional household responsibilities that I am unable to do. It’s a lot to take on so far. My daughter is vocal and asks a number of questions about my ALS. She seeks information independently, and has no trouble asking me questions. She quietly wants to spend time with me and feels anxious about advancing in life and not being around me full time. She worries about missing out on time with me. My son doesn’t cope well at all. He is very internal and has never talked about my ALS. He simply won’t talk to anyone about it. He struggles significantly and has been suicidal on two occasions. He doesn’t want to “grow up.” He spends as much time as he can with me, and I often find him waiting around for me to be available to go do something with him. Lately, he has tried to be more helpful around the house doing things I cannot do. I find him to be aware of my limitations, and thoughtful about them – as he wants to look out for me. I just wish he was able to talk more about my ALS and what he is going through.

Melissa: Can you tell me what life is like going from a professional to no longer being able to work?

Sam: Going from an Executive Leader at a company with a large staff to being completely retired from work was more difficult than I expected. I was a leader of about 400 people at work. I spent my time developing strategy and developing people. I had a lot of people looking to me for guidance, development, and learning. It was stimulating and challenging. I loved to help develop people and their careers. So going from someone who was important to a number of people to not working was difficult. I suddenly struggled to find a purpose. I was not challenged intellectually. My whole career I have always been learning and developing myself and others. And then when I stopped, I was lost. My development and intellectual stimulation and curiosity for learning was gone. I was extremely bored. For the first year though – I was very busy with all the disability insurance and house renovations that it kept me very busy. It just wasn’t challenging. It was all busy work that was routine and boring. Well, I hate to say it, but I am still very bored and uninspired mentally. I want to do so many things, but I am stuck with where life is at with the kids and their needs as they slowly become fully independent young adults. So, while I could be doing many things that would be enjoyable and stimulating (traveling, learning to paraglide, learning new adaptive sports), they are slowly slipping away as I become weaker and it is more difficult and I am not quite free to go be 100 percent selfish and do these types of things. My wife and I enjoy time together in our motorhome and really wish we could spend much more time in it. I am happy traveling and exploring with my wife. It’s stimulating meeting new people on the road and learning about new places we have never been. I enjoy that a lot. I hope that we will be able to do more of that as the kids become more independent. My fear is that it will not happen during the time frame that I am still relatively able to travel.

I am still lost as to my purpose and still extremely bored. My friends all work, and it adds to the feelings of being completely alone. So I haven’t quite figured out how to manage not working. But its not about being busy, because I can be busy, and still bored and unchallenged and uninspired. Its more about doing something that makes a difference. I really liked developing and leading people. I am still trying to figure out what I want, and how I want to spend my time.

Melissa: Can you tell me what it has been like to become wheelchair bound?

Sam: Becoming wheelchair bound has been a very enlightening experience. It has taught me a lot that I am ashamed to say I did not appreciate. When one becomes wheelchair bound, the world around you suddenly changes. It’s not that same place you have lived your entire life, and the world reacts differently to you as well. So, you don’t feel like the same person. It’s like you were playing a game, and somebody suddenly changed the game board on you. In a wheelchair, you are not noticed. People cut in front of you in a line, or simply don’t even see you. You are cut off in public. There are many places you now can’t go, as they are not accessible. Travel requires much more advance planning to understand the accessibility of the destination. People look at you differently and some point and stare. Transportation is difficult and in some places, it just not available. And, the unfortunate reality of the situation is that you need money to have things become accessible. Wheelchairs cost a lot of money, and then there is the wheelchair accessible van. And, typical wheelchairs only manage hard surfaces and pavement well, and that’s it. So if you want to still be active outdoors, one needs a special wheelchair for that as well. All of this simply isn’t financially possible for most people and it really upsets me that disability services and products are so prohibitively expensive.

Me actually being in a wheelchair hasn’t really bothered me all that much. I don’t find that I have been severely limited by it. But that’s largely because we are fortunate to have an indoor chair, and all terrain wheelchair, a wheelchair van and everything needed to be able to still be almost as independent as one was without a wheelchair. But I do get upset by is being marginalized by society, and not having the same ease of travel.

Melissa: Sometimes people tell me they feel like other people really “remember” their problem for a period of time, and then people “start to forget” or check-in less. Has that been your experience? 

Sam: This is absolutely the case! As the old saying goes, ”out of sight = out of mind.” When you are first diagnosed and word slowly travels, you have an outpouring of empathy from many people far and wide. And that is sustained for about 6 to 12 months with people checking in, seeing how you are doing etc. But after a period of 6 to 12 months, you are back to your core group of close friends and everything is back to the way it was prior to your diagnosis. You definitely know who your real friends are and the ones that will be there when things start to get worse. Its a lonely disease.

Melissa: I know you’ve been semi-estranged from your family for a period of time, and I’m wondering how you’ve decided to address that and if you have decided to do so?

Sam: Yes. I was estranged from my family for a period of 9 years. Even learning of my diagnosis didn’t precipitate reconnecting. However, my sister recently passed away in a tragic car accident and this was the precipitant that reconnected me with my parents. It’s truly unfortunate that it took a sudden death in the family to lead to this, but good can come from tragedy. So, I said what I had too say to my parents, and let the past be the past. Relationships and experiences are all you have left – so why waste the time you have even further. Bury the axe and move on.

Melissa: How has this illness shaped your thoughts these days?

Sam: Having ALS has changed me for the better in my opinion. I am a perfectionistic, driven, competitive individual who likes to succeed. With that, I worked hard, travelled a lot, was away from home a lot, and sacrificed time with my family and friends. I also was high strung, and little stressors bothered me. I was frustrated in traffic, in a line, and got upset over trivial matters and issues. ALS opened my eyes to what really matters in life. Savor each moment. If you are stuck in traffic – use the time to call someone you haven’t talked to in a while, or turn on the radio and listen to a book, or some of your favorite music. You can’t change things like these, so try to turn negatives into positives. Simply don’t waste your time you have. I appreciate more. I stop and listen to the sounds outside, take a deep breath and just relax and take in the outdoors. I have slowed down and don’t feel rushed and pressured all the time. I like what ALS has given to me in this regard – but it’s a hard lesson to learn. It’s hard to have those around you get upset for things you now think are completely trivial and don’t matter. I want to say, “listen, if this was the last day you were going to be alive, would you really get upset about whatever it is…” Don’t sweat the small stuff. Change the things you can and make the most of the things you can’t change. But this learning is a process. It took some time to get to this point. Of course, for a long time, I was very upset for all the losses I would eventually experience with ALS.

Melissa: What have you learned from your experience? 

Sam: I have learned to be patient. I have learned what really matters in life – relationships and experiences. I have learned that I need to be vulnerable and accept help – still need to really work on this one though. I hate needing to ask someone for help and depending on others; I don’t think that will change. I think I will just need to surrender and learn to accept that it is the way it is. I am learning to be ok being with myself. ALS is a very lonely disease and it’s honestly the hardest thing so far about the diagnosis. I can cope with the physically disabilities, but the emotional isolation and loneliness is very difficult. I really look forward to my weekly “therapy” sessions as its the only place and person that I can be fully open and vulnerable with. I hope that as I get more comfortable with that experience that is transfers to other relationships outside of therapy.

Melissa: What do you want to share with people who have had similar experiences to you?

Sam: This is one of the hardest questions yet. Each person is unique and comes with a uniques set of thoughts, behaviors, relationships and experiences that will shape one’s response to their illness. The one thing that I think can be universally said though is: it’s going to be very difficult. With the diagnosis, you have been given the opportunity to take care of the important relationships in your life, and to focus on what s really important. So, don’t waste the remaining gift of time that you have available. Use it.

Melissa: What do you want to share with people who have not had similar experiences, but might want to know how to help out someone in their life who is facing a similar situation?

Sam: ALS robs one of their body, but doesn’t rob them of their mind. Trust me, its probably much easier for people with ALS to talk about their illness than it is for people to ask them about their illness. So don’t be afraid. Also, people with ALS can’t move anything! So you have to be the one to make sure they are included in activities and communication. You will need to be very patient and wait for them to respond depending on their degree of difficulty. ALS is so incredibly lonely – make sure you can take time to just be with someone you may know with the illness. And, the power of touch. Every human needs to be touched. ALS takes that away from a person. [That person] may be unable to move and initiate touch. Don’t be afraid to touch a person with ALS; it’s just another thing that makes the illness so incredibly lonely.

Melissa: Any closing thoughts? 

Sam: I am just at the beginning of my journey and I still have so much to learn and experience. A key closing thought: ask and accept help. You will not be able to take this journey on your own. Seek therapy; it’s the only person you will truly have to relate to and ask the tough questions and get the straight answers. I could not have coped with the last year if I wasn’t seeing a therapist. It helps tremendously.

Melissa: As you’ve grown over the years, what would you have said to your young self now looking back?

Sam: The honest answer is, “I don’t know.” I would in hindsight tell myself that relationships are the most important asset in your life. Take more time on valuing and cultivating good relationships. Spend as much time with your family as you can and travel and explore as much as possible. I would also advise on spending much less on acquiring “things” and spend much more time and resources on “acquiring” experiences in life – vacations, travel, time with friends and family. I would tell myself to “live small.” That means you don’t need a huge house and everything that goes along with that. Time, and people are much more important. I love living “small” in our motorhome, as it maximizes time with [my wife] and enjoying life. Everything else just gets in the way of the important things.

Resources:

Should you or someone you know be impacted by ALS in the Greater Chicago area, please connect with the ALS Association of Greater Chicago for resources, support, and a team of professionals who are dedicated solely to working with ALS. The Association can also connect you to ALS certified clinics across the US for comprehensive care and support. For those outside of Chicago, connect with the Association here and find your local chapter today.

THE BEGINNING

For a long time now, I’ve had this idea percolating and circling around my mind. This idea of feeling alone, but not actually being alone. Or perhaps there’s one other person on the planet who feels like we do, who has experienced similar situations to us, but we don’t know them. So, that random person out there can’t really help us all that much in feeling less alone or in creating a shared experience.

Let me back up a minute and tell you how this idea even started. Ten years ago, in my early 20s, I started seeing clients for psychotherapy. I’m a social worker and a psychotherapist. But before I had earned both those titles, I was a graduate student sitting in appointments with my first handful of clients. I should add the caveat, social workers are generally highly supervised for the majority of their first five years in practice. I don’t want you all to think a 23 year old version of myself was flying off the cuff offering feedback to others. But, I digress.

Anyway, from the day I began seeing clients to 10 years later, two common themes emerged. The first is, “do you understand what I’m saying?” And the second is, “do any of your other clients feel like this? Do you think other people have had this same feeling?”

The answer to both questions is a resounding yes. Yes, I totally hear what you’re saying. I may not understand in a celluar deep down sense of “I have had that same experience” but I definitely hear you. Loud and clear. On some level, I get it. And guess what? A lot of other people feel this way too. You might not know them- because sometimes we hide or feel we need to hide a lot of our lives- both pain and joy. You might not know them- because sometimes there really is no one down the street or in our lives who does feel the same way or is going through a similar situation.

Out of those musings and experiences, Anybody Like Me was born. There is someone out there like you. Maybe not everybody else, but a lot of people on this planet feel similarly to you (there are about 7.4 billion of us) and you’re definitely not the only one feeling the way you do, at least from what I can tell from over here. And while I’m not sure if anyone will read this, or if they feel more connected to Earth as a result (always dream big!), I decided to give it a try and see what happens.

All of this to say, welcome aboard, explorers. Let’s do this thing. Come and join me. If you have a story, I want to hear that too. You can email me at: anybodyouttherelikeme@gmail.com

I ask two things, readers. One, please read with an open mind and heart. This website/blog is about connecting, not furthering isolation. And two, thanks. I guess that isn’t an ask. It’s a thanks. Thanks in advance for reading. And away we go…