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.