GUEST POST: THE OTHER SIDE
The Other Side
By Jessica Taylor Piotrowski
My husband is a multiple sclerosis warrior. He is also my best friend, my partner of over 20 years, my advocate, my person. He knows my habits inside and out. He can predict what I will say, he knows just how I like my coffee, he knows how to make me laugh, he understands that my love for dark chocolate and good whisky is on par with my love for him, and most of all – he loves me for who I am, exactly as I am.
People often tell me that I am resilient, strong, gritty, determined … a fighter. I am not so sure. Perhaps. But MS has challenged this resilience. MS has challenged my strength. MS has pushed back against my grit.
But how? Why? I don’t have MS. He does.
It’s the other side of the disease. The side that we are afraid to talk about because we don’t have the actual disease, so who are we to say anything at all? Who are we to complain about its effects? Who are we to even mention we are affected at all? We – the spouses, the caregivers, the family members – we are not dealing with the often debilitating effects of the disease. We aren’t experiencing deep fatigue, muscle spasms, bladder sensitivity, memory problems, speech challenges, vision defects, aching muscles … we aren’t experiencing the daily injections, the numerous pills, and the notion that – at some point – we might wake up and struggle with walking, or talking, or any other typically uneventful daily life event. We aren’t looking for bathrooms consistently. We aren’t turning down invitations because of fatigue. We aren’t writing down lists after lists after lists because it is too complicated to keep a series of tasks in our mind. We aren’t using breathing machines at night to deal with MS-induced sleep apnea. We aren’t scheduling MRIs and holding our breath as we wait to hear if the lesions have increased. It’s not happening to us, so we don’t speak.
But here’s the ugly truth. Here’s the truth that we don’t want to talk about for fear as to how people will judge us. It IS happening to us as well. Not in the same way, of course, but we – the spouses, the caregivers, the family members – we feel it too, we experience the effects of MS as well … and it sucks.
I cannot speak to others’ experiences nor would I pretend do – I can only speak to my own. But, what I can say is that the day my husband was diagnosed with MS – my life changed, too. And my resiliency, my strength, my grit … it’s been tested nearly every day since.
Initially, the diagnosis brought fear. Fear of the unknown. What was MS, exactly? What did it mean for his quality of life? Could we have children? Could we travel? Could he still work? What do we do? How do we treat it? How much would treatment cost? What would his future look like?
Thanks to organizations like the National MS Society, and an incredible team of doctors at Jefferson Hospital in Philadelphia, the initial fear was quelled a bit. Information has a powerful way of replacing fear with hope, at least for me.
But … as it turns out … information only goes so far. No matter how many articles I read, blogs I followed, or support groups I sat in could have prepared me for my new normal. A new normal that, quite honestly, I’m still adjusting to day-by-day.
I was not prepared for his fatigue. I was not prepared to come home from a morning run to find he was still sleeping in bed, 13 hours later. And honestly, sometimes I just want to scream “you are still in bed!?! Why not get up and make us breakfast or do some laundry!?!” …. And in truth, sometimes I do scream that before I remember … before I remember that my husband is fighting a disease every day that requires rest, far more rest than most of us need. Those days – days when I yell – I feel awful, like the world’s worst wife.
I was not prepared for watching the injections, and the often significant pain afterward. I was not prepared for the memory challenges that make me want to scream “WE JUST TALKED ABOUT THIS!”. I was not prepared for the way that MS would make inroads into the activities we choose, the food we eat, the races we run together, the hotels we stay at, the flights we book … everything. It is always there. Sometimes quiet, sometimes loud, but it is always there.
And although it’s very hard to write about, if I’m being very honest, I was not prepared for his lack of affect. My pre-MS husband was always the clown of the party, the person with the biggest smile on his face, the kindest expression, and he always made me feel so loved – as though I was the only person in the room. I could walk into a crowd of 500 people and know he would find me in an instant, would smile at me with a deep love, and I would find immediate calmness and safety. But MS has stolen that too. MS has begun to steal his ability to show emotion. It doesn’t mean he doesn’t feel. He does. But it often seems as though he has no emotion at all. It affects his ability to look at me deeply. It has also made him more somber. This is ‘normal’. This is part of MS. And as narcissistic and selfish as I sound, sometimes I just want to scream “LOOK AT ME THE WAY YOU USED TO!” For the past 3 years, I have blamed myself. At points, I have convinced myself that I did something to change his behavior. I have fought back tears as I convinced myself that maybe he no longer loves me the way he used to. Maybe I’m not pretty enough or smart enough or good enough for him? It has taken counseling (for both of us) to help us talk about these things, to help me realize it’s not me, it’s not him, our love is still there – it just sometimes is buried under the MS mask.
I was not prepared.
I don’t think anyone can ever be prepared.
And I hate MS. I hate watching my husband battle. I hate the fear of the unknown. I hate not knowing where our path will lead. I hate that our conversations about having children are veiled by this disease. I hate that so many of our decisions involve this damn disease. And more than anything, I hate watching him fight. I hate that he has to do this. I hate that this happened to him.
But in times when I feel overwhelmed, saddened, or frustrated, I try to dig deep and see what MS has given us. It has changed our perspective on life – we now live for the moment far more than ever before. We talk deeply, and often. These talks aren’t always easy, but they are important. We are the healthiest we have ever been and continue to be committed to a healthy lifestyle. We have found new hobbies that bring us joy (hiking! running! yoga!), and we have found that our support network runs deep – so very deep. Family. Friends. Strangers. It’s incredible. It’s unforgettable. And on days when things are simply too much to bear, we both know we have a network to keep us standing.
And right now, this network is helping us by joining forces to run in the 2017 PA MuckFest MS – a mud run where 100% of fundraising goes to funding MS research. We have a team of people (Team “Find a Muckin’ Cure”) who are committed to getting muddy with us as they raise money to help find a cure. There are so many people who are donating to our team to help us – together – fight back against MS. People we know. People we don’t. But so many people. So many people saying “we stand with you”.
And while I may not be an MS-warrior myself, as someone on the other side, please know how much I appreciate every single person that is standing with us. Whether you are running with us, donating to the MS Society, spreading awareness, or simply keeping us and other MS-warriors and their ‘others’ in your thoughts, I thank you.
I hold onto the hope that we will find a cure for this disease. I hold onto the hope that John will defeat this disease. I hold onto hope because hope is more powerful than fear.
Thank you for helping me hope.
“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face… You must do the thing you think you cannot do.” -Eleanor Roosevelt