The Difference Between Living and Existing After My PPMS Diagnosis
Columnist Stephen De Marzo grieves the abilities he's lost due to PPMS
It’s been a year and a half since I was diagnosed with primary progressive multiple sclerosis (PPMS). I still have use of my limbs and am able to walk, albeit shakily, without a walker. My eyesight has not been affected, I drive, and am able to carry on a conversation with some clumsiness.
Some may say I am lucky. I say it depends on your definition of luck. Overall, my friends tell me it doesn’t seem that bad, but I frequently ask myself if I am really living or just existing.
When I run into friends, family, or acquaintances I haven’t seen in a while, they tell me I look great. But when I stumble through my words during a conversation and then laboriously walk away, an odd silence follows. Encounters usually end with, “Let me know if there is anything I can do for you.” This just reinforces my feeling of simply existing.
As long as all the environmental conditions around me are just right, all is good. My wife jokingly named me Goldilocks because temperature and stress control all must align for me to feel comfortable and emotionally balanced. I liked the name and adopted it with a twist for my column: “Goldilochs” includes my need for perfect conditions (“Goldi-”) and the Loch Ness monster that is my PPMS (“-lochs”).
I have better luck controlling my environment than I do my emotions, which are often raw and uncontrollable. This causes me to endure moments of deep sadness and depression.
I have been reflecting on why I get sad and depressed and believe it has to do with where my mind is at certain moments in time. Immediately after my diagnosis, I was angry and upset. I wondered, why me? I longed for the days when I didn’t have to focus on my physical limitations. I didn’t want to go anywhere or do anything. “I can’t do it,” I told myself every waking moment. My wife would respond by affirming, “Yes, you can!”
Dealing with the memories of what I had been able to do previously and what I’ve lost keeps me up at night. I don’t think enough about what is left or what I can still do. I am a glass-half-empty kind of guy. I often wonder if I would have been better off if I was disabled earlier in life and didn’t know about the abilities I’d lost.
Previously, I had many titles and wore many hats, but now I must lean on everyone. I can’t support myself physically or mentally. I want to live, not just exist.
My definition of living aligns with a comment billionaire Elon Musk once made: “There have to be reasons that you get up in the morning and you want to live. Why do you want to live? What’s the point? What inspires you? What do you love about the future?” Currently, my goals are small: Get up, get dressed, drive to the farm, water the crops, come home, and rest. I’ve found little joy in achieving these goals.
I realize that there are moments when you are living and moments when you are existing. The challenge is balancing the two to make truly living a greater factor in my daily life.
I think part of just existing happens when I’ve had a day with too much activity, which forces me to rest for hours on end. This happens to me frequently, because I need to be part of the equation in life and work, yet must be mindful of not doing too much.
Living is practicing my faith and being with my wonderful church community. Living is also being with family and friends who are strong and supportive.
Last weekend, I had an opportunity to experience living during a family gathering at an outdoor restaurant with live music, free of the restraints of my MS. The weather was just right and the band was fantastic. For me, music has the ability to remove me from my physical being and send me to my spiritual being. Although my physical struggle returned when the night was over and I had to hobble back to the car, I had a slight pep in my step — I had lived as I had before my diagnosis.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
IR
The only way I can cope with it is to think of it as two lives. Life 1 was perfect, lasted 40 years and gave me incredible memories. Life 2 started the day of the diagnosis - no second chance (like many cancer sufferers get), no real hope - the EDSS is a nice little crystal ball showing us the future. As it’s a chronic, degenerative disease it always gets worse. Over the last 20 years I followed all the potential game hanger treatments CCSVI, remyelination therapies, stem cells… they’ve all come to nothing. The neuros don’t know the diseases they treat and certainly have no track record of seeing their patients get better. The various DMTs are good at tackling focal inflammation / relapses, but there’s now talk of smouldering MS as the cause of disability progression. Maybe BTK inhibitors may make a difference! My two lives couldn’t be any treatment- steak v dog sh*t. I miss my old life so much. You are right about remembering what you could do. Nasty, insidious disease.
Stephen De Marzo
Brutal, yes it is! No where to go. So little know about it’s effects. Sad, defeating.
Stephen De Marzo
Two lives. yes I've often thought of other events like that. Death, Divorce Job, be thankful for the time you had together, it is a blessing. Then starts the second chapter. Life takes funny turns. Brutal! Thanks for reading!!
Mr Ryan Sherwood
HSCT gives people their lives back for a time and it can be a decade or more. What are you talking about?
Dan Madden
Please tell us about your experience with Ocrevus.
Thank you
Stephen De Marzo
Hummmmm, a future article?
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tamara lillard
I am so sorry for Stephen and what he is going through and feeling. I have also been suffering symptoms for years and, although my doctor encourages to get a diagnosis, I have not done so. In the last three days I have begun to have issues with my left eye so, a medical intervention seems to be on the horizon. I also suffer from sadness over parts of my former life. I grieve over the many animals I have rescued, rehabbed and rehomed. I weep frequently, sometimes for apparently no reason. I pray and thank God for the strength he gives me to mow my own grass and do yard work. I am 75, a widow, and my family consists of 6 Jack Russells, they are my blessings. I can truthfully say today, with all of this, I am living my best life and love everything except having lost my job 2 years ago. The only thing that I worry about is making arrangements for my little dogs in case of an emergency - nothing else really matters.
God Bless you Stephen.
Stephen De Marzo
Wow very powerful! Yes, I too am finding strength in the lord. I wish I could find some words of comfort for you. Yes our fur babies are a welcome diverision. Let them make you laugh. I have two westies they are my comedy team!
Greg C.
After 14yrs with m.s. i took up golf....recently shot a 91 at a tough golf course. Ya never know how this is going go...i try not to focus on it. No meds and no special diet....definitely have off days but doing ok.
Anita Simon
I was diagnosed with PPMS Sept 2015. I too am still walking. Can’t go long distances any longer but I do take my dogs out for walks. I think that helps me. I do 3 walks a day. The heat kills me. I live in So Florida so in the summer it can be a killer. I look for clouds to time my walks if possible. I’m also not very good w/ dealing with stress any longer and I can have a trigger temper when exhausted. I’m retired now. Keeping the house in order and taking care of the animals (2 dogs/4 cats) is on me now. And I guess that keeps me busy. Sometimes I feel like I’ve never worked harder in my life! How do I deal with my diagnosis? I don’t think about. I don’t dwell on it. I take it one day at a time. I remember reading about Olivia Newton John and her cancer diagnosis. She said she didn’t think about it. Felt that if she did she would give in to her disease. When I heard that, I said that’s how I handle mine. I am not on any DMT yet. I just take my vitamins including one Neuriva De-stress per day. That seems to help me. But everyone is different and I know I would probably be reacting differently if my disease was worse that’s it is. For us who still can walk even though our gait may not be the best- don’t overdo things, don’t exhaust yourself, take your time. I notice when I rush things happen like me falling, dropping things, getting irritated. So I take my time with everything. Hang in there Stephen.
Mare Lynch
Yes. I exist. Therefore I am…in 10+ pain, cry all the time,, Homebound, can never, ever get comfortable. My heart hurts for my beautiful 18 y/o daughter. My only blessing Dx 46. Taught hs 30 years with a smile. Loved life even w rrms. Now very SPMS 61 no mobility. My hubs is my soulmate. So very sorry. Our disease is cruel. We were robbed.
DAVID JOSEPH TROPEANO
You describe the emotions and the daily ups and downs of living with PPMS. There are too many times when I feel that I am just existing, but then again I have to put everything into perspective because I can still see, still hear, sleep, eat (with some difficulty as of lately), etc. Like you I have a tendency to live in the past remembering what I was like and all the things that I could do. Strangely, in my mind I still feel that I can do those things, but physical reality shows me that I can't. Perhaps the thing that bothers me most is the burden that I place upon my wife. She literally has to live two lives. With that being the case I often ponder what the future will bring and how long can she continue to care for me. I was diagnosed in 2000 and I have learned to understand my capabilities of what I can and cannot do. It's a bummer, but we have to live in hope that some miracle treatment/cure could come along at any time. Keep the faith brother!
Robert N Eckelman
Stephen,
You need some tough love. Stop focusing on what you can't do and focus on what you can do. You now have the opportunity to become a glass-half-full person. No one can be positive for you it is on your shoulders. I am 100% with you, I was diagnosed a year ago. I was told my MS was very aggressive and I had many lesions more than 15 in my brain, neck, and spine. Another doctor told me my case was prognostically concerning. None of this is a debate.
I am attacking my MS and I hope you will also. There are things you can do to make the best out of your MS. Make mental changes, dietary changes, physical changes, possibly even friend changes to live your best life with MS. None of us choose to get MS but we must choose how we handle it. It is different for all people. Sounds like I may be more fortunate than you and I don't take that for granted. I am not a Dr, I am new to MS so I don't know much. Since my diagnosis, I have become a better person and I want to help others if I can help you I am here for you. Best wishes, start living. Like your wife says "yes you can".
Stephen De Marzo
Well you got my wife's vote and attention! Everything you stated is on point and accurate, easier said than done is my response. Weak, tired and surrender are the songs of the day. I'm trying! Thanks for the pep talk
Tom Anderson
Hello Steven- The MS Blog and MS Selfie are where I get my most objective MS Info. I turn to MS News Today to see how objective info gets filtered by a more commercialized website. I am a somewhat suspicious or skeptical fellow and often look deeper at things to try to understand… whatever. I have MS too, not since 50 yrs, but since around 30. It was a slightly different MS world back then with little info readily available. Today info (good and bad, without being labeled as such) is all over the place. I am “inactive” SPMS, which puts me in a different boat than you, so to speak. But you got a chance to do things till 50 while I was interrupted and set in a new direction at 30. We are both related to New Jersey, your business and life are there. Mine started there and I have a BA from Rutgers. Do you attribute any of your writing talent to Perdue, or did it exist before?
I can write essays about the course of my life and how MS has impacted it, from marriage and relationships, wealth accumulation, employment and law, to things like self satisfaction…on and on. Here, you make a point of dividing the before and after diagnosis periods into living versus existing. I would only comment that as an intelligent person, you will naturally drift towards “living” and purpose. But I would suggest to you that you don’t have enough experience with the “monster in the room” yet. I would also advise being careful not to inadvertently validate others’ inability to take action, or to attribute outcomes to supernatural causes, as in “why me?” You bring up interesting subject matter, and not as a criticism, I’m left wondering how you “stumbled” into the role of commenting on your MS experiences at this website. “Why you”? Good luck to you. Find some meaning!
Stephen De Marzo
Sorry for the delay in response. lol, I attribute all my incredible writing talent to Purdue. Boiler Up! Interestingly enough I was contacted because of a post I put on Facebook regarding the change in my business model. Someone within the Bionews Organization put out an inquiry and contacted me. As for my experience with MS you are correct I'm only in it two years an infant compared to some. Should you be interested I can pass your name along. Although I'm not sure if you being a Rutgers grad if you'd be up to it. LOL. I think you could bring much to the table!
Jane Montgomery
I worked hard at improving my woeful coping strategies, and it took me a long time. I learned to stop “doing “ as soon as I felt tired instead of going on until I felt exhausted after which I would feel worse for two days! I have to accept doing much less. My breakthrough came when I decided to pay attention to gratitude self talk, and let the negative, hopeless thoughts escape my notice. I have found books, physical or recorded, and music that make me feel more positive, and this helps my wellness. I hope you can find what grows your wellness soon.
Stephen De Marzo
Yes Music transports me to a different place. Thanks!!