I was asked a short while ago if I would be willing to share what being a man with MS truly feels like. Before beginning to share my experiences I want to pause for a moment to say MS doesn’t see gender, it merely enters into ones life without bias to gender, race, sexuality etc… I live in Canada which reports the highest rate of MS per capita at 1/500 people across the country. Roughly one third of MS patients in Canada are men, which makes us guys the lucky ones.
I was diagnosed at the age of 25, on New Years Eve day, one week after I proposed to my wife on Christmas Day. What began as sensory issues with my vision, tingling in my feet and hands quickly moved into my face. Within one week I began to develop double vision which affected my balance and gait.
At the time I merely thought it was nerves from proposing to my wife. On New Years Eve day I attempted to drive to work. While on the freeway I knew I had to turn around and go back to our apartment. It was difficult to keep my car in its lane. Once back at the apartment I called my new fiancé at work asking her to come home to take me to the hospital.
After about 12 hours of waiting, I was assessed my a doctor who determined the balance issue was not caused by the double vision. I was sent for a Cat-scan. When the results came back, we were told either I had Mini Strokes or it could be Multiple Sclerosis. An MRI would have to be done the following day to confirm. It goes without saying, this took my wife and I by surprise. She didn’t know what to say and I didn’t know what to think. We waited until the next day for the MRI. Once complete, a neurologist came to see us and explained there were obvious signs of active MS lesions on my brain. He explained there would have to be a monitoring time of three months to see if there would be further disease activity before confirming the diagnosis. Early April, I was given the official diagnosis of Multiple Sclerosis as I continued to experience new and worsening symptoms within those first three months. Shortly thereafter, I began treatment.
I find myself to be a very optimistic person in general, if you have read my previous articles you will see I have experienced quite a few setbacks in my life. Ranging from Ulcerative Colitis resulting in a permanent Ileostomy (a bag on my abdomen after removal of my colon), an incredibly rare skin disease by the name of Pyoderma Gangrenosum, seizure activity, along with anxiety and depression.
This optimism isn’t always prevalent. I experience times where I am very unsure of my future. Whether it be my physical capability going forward, my ongoing changes in mental state, what will my employment look like in five years? These are just a few of the questions I ask myself routinely. This negative self talk does bring me down. Especially when I am going through a relapse of the disease.
I grew up with two older sisters and my mom. My father moved to the USA after my parents divorced when I was 13 years old. With this upbringing I saw how the “good guys” treated my sisters versus the guys that didn’t last long. Most notably my now brother in law, well 20 year brother in law this coming September. I began to work at the age of 16, and continued to work full time straight out of High School. Over the years I continued to elevate myself within the organization leading to a Specialty District Manger role at the end of my 14 year tenure with the company. After which I began with a new company until last year when I was let go.
As my wife and I began a family, I was always working full hours making the most money which supported our lifestyle. That being said, when I had MS relapses our household income would take a hit significantly. From onset of a relapse to the point I can return to work is on average 6 months or greater. As a man who strongly feels he should be the one to support his family, these early relapses with babies at home were incredibly taxing on my mind. On occasion I would go as far as to tell my wife I would understand if she wanted to leave me, that I would understand, not holding anything against her. She told me she was going nowhere and could not imagine a life without me in it. She is with me in true “Sickness and in Health”. It may not always be easy, but nothing in life is.
Even with assurances from my wife, my mind tends to go into negative spaces during those quiet moments when I’m alone. I look at all she has given up, how I physically cannot be there for our two children at times due to my restrictions. I feel an immense sense of guilt for not currently working full time. Together we determined it’s not best for me to work full time. My MS has progressed, at the end of my full time employment I would not be present for my family. All of my physical and mental energy was spent at work. What those I worked with didn’t realize is, for as outgoing and positive I was at work, I would not have the stamina to carry that energy into my home life. Even I didn’t realize just how much until I was let go from my former employer. My family noticed a change where I was more positive and fun to be around, I was able to actually spend greater quality time with our kids. It was a truly eye opening experience for myself.
Even as positive this aspect of my new life was, I continue to live with a sense of regret I am not the stereotypical “Bread Winner” of the household. When I went through Pyoderma Gangrenosum, I was away from work and the steady pay check for the better part of a full year. Ultimately we were forced to sell our house. A house our entire family was in love with. Even as I’m writing this, we again need to downsize our home. I have come to realize this is just a phase of life. We will rebound, it may just take a bit longer than expected.
Realistically, it makes sense for our family. Further relapses are inevitable. This way the weight of loosing the majority of household income is mitigated. My sense of guilt goes far deeper than just monetary. I live with daily MS activity which impacts various aspects of my life. Cognitively, my memory is not as strong as years past, I have significant mental processing impairment which effect my physical movements. This was confirmed through specific testing through my MS Clinic. Seeing documentation of these issues, gives some sort of relief knowing it’s not all in my head.
As a father I find tasks difficult especially in the summer heat. As I am writing this, the temperature outside will be approaching 34C (93F) for the next week. For me to take our kids to a water park to cool off would certainly send me into a pseudo relapse as heat drastically effects most people with MS, myself included. This has to be one of, if not the most frustrating parts of being a parent with MS. As a father, there seems to be an inherent responsibility placed upon us my modern society. The father is the “man of the house” We are expected to be the ones to BBQ, mow the lawn, shovel the snow, carry our kids on our backs, be the driver of the vehicle everywhere the family goes, maintain the house, play sports with the kids etc. As a man and a father with Multiple Sclerosis, not all of this is possible. I’ve mowed the lawn and shovelled the snow since my diagnosis, as expected I paid for it afterwards. As did my family these small simple tasks take me out of commission for hours, on occasion the entire day.
An equally frustrating aspect of being a father with MS is the cognitive impairment. On days when I require my cane to walk around, it is easy for others to see there is something up with me. When I am having issues with speech, memory recall or simply replying to a question. Some may think to themselves, is this guy drunk? Or just stupid? Is he trying to think up a lie to the question I’ve asked him? Even if these thoughts are not in their heads, in my mind they sure are.
This has to be the most vulnerable feeling a father could have. At the same time, it’s important to not discount what a mother with MS feels. Women have just as many stereotypical expectations placed on them just as men do. I merely want to engage a conversation of certain specific expectations men face. From others I have become close with who share this disease, both men and women, we share the same level of guilt. Either for our significant others, our parents, brothers, sisters and most of all our children, either present or future. Speaking as a man and father with MS, I can honestly say there is absolutely nothing anyone could say or do that could take this guilt away. In those moments when I am alone with my thoughts, negative self talk running rampant, I quietly remind myself of what my wife told me many years ago during a relapse.
“You may not be able to get on the floor to play, run around the backyard, chase them all over. But what you do, is be there for them. Adapt. You create amazing new games, new activities that they enjoy and you can do. The memories they will have of their childhood, will be filled with these. NOT memories of their dad not being able to chase them around a park or take them out on a hot summer day”
This thought alone, often will initiate a change in my mindset. I am a good father, a good husband, a good brother and son. I have made countless incredible connections throughout the entire world, and say so proudly!! I may always a sense of guilt but it will not rule my life. There is more to me than the illnesses I have or have experienced in the past. I’m living my life to be the best husband, father and friend I can be.