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Painting Wall
  • Writer's pictureZachary Storey

Lessons on Love and Lesions, By Zachary Storey

I learned a lot over the past couple of months about what it means to be a supportive partner. And the thing about these lessons I learned is that they are specific to Kendall and me. We are two different people with two distinct ways of thinking. The way that Kendall’s diagnosis affected us both was extremely different and it was part of my job to find bridges. I kept reading how isolating it can be to be diagnosed with a neurodegenerative disorder. You can be surrounded by love and support but still feel completely alone. You can be victimized or pitied when all you want is normalcy. You can be treated differently or viewed differently when you’re still the same damn person you were before. I didn’t want Kendall to feel isolated and I certainly didn’t want her to feel pity, she hates pity. Which is tough for me because I love a little pity. And my wish when I am feeling down is to be smothered with pity and affection. So with that said, take each of these points with a grain of salt, as they apply specifically to our experience and who we are:

  1. Be there as much as you can during a diagnosis. My flexible hospitality work schedule allowed me to be with Kendall for almost the entirety of her stay at the hospital. Not everyone is afforded this same luxury for several reasons. But if you can, try and be with your partner as much as you are permitted to. This benefitted us in a multitude of ways. Perhaps the most important reason is you are overwhelmed with a tremendous amount of information and questions. Having two or more people there can only help to retain this information and answer or clarify any questions. It enables one person to just listen and respond to doctors and the other to write down notes. There were many times a different doctor would come in and go through a timetable of symptoms and medical history and each time, we were able to build a clearer picture through our shared memories. As I mentioned up above, receiving a diagnosis can feel incredibly isolating so being with people you love can help someone get through an already isolating experience. The night Kendall was transferred to the neurology unit I got some inside info on how I could beat visiting hours and stay the night with Kendall. Do I endorse breaking official hospital rules? No. But Kendall has always had trouble sleeping alone and the hospital was oftentimes a scary place so in the name of her getting some sleep, I viewed the breaking of rules as necessary.

  2. If your partner delegates something to you, do it. This can apply to many different things. As I previously mentioned, before Kendall was diagnosed or in the hospital, she loved to WebMD her symptoms and come up with her own answers. Once she was in the hospital, she didn’t want to look up anything online. The situation was scary and stressful enough and she didn’t want to go down any unnecessary rabbit holes that would only make sleep go down and stress go up. Therefore, become your partner’s researcher and advocate. Arm yourself with information so you know the right questions to ask. Sleep and stress reduction are key for neuroinflammatory diseases, so lighten your partner’s load whenever you can. I would also relay information about what was going on to Kendall’s close friends during the week in the hospital. This afforded Kendall some time to rest rather than recapping what doctors were already making her recap on a day-to-day basis.

  3. Consider the future, but stay in the present. This diagnosis has forced us to consider changes to our lives. It has shifted some timetables and will certainly expedite certain decisions we had thought would be further down the road for us. But luckily, outside of this, MS hasn’t had a tremendous impact on our day-to-day. And nor should it. This is a disease that can present different challenges throughout your life, but don’t let the threat of tomorrow hinder your happiness today. Don’t be naive to what could happen down the road either. But the truth is, this is an evolving disease. Research and treatment have come tremendously far in the past 30 years so one could only imagine what might be on the horizon. That’s why it’s best to stick to today.

  4. Parttake in any lifestyle changes together. There is a lot of conflicting information and perhaps an overall lack of information out there on what diet and exercise can do to help. Do your research and come up with solutions that are best for you. We have decided on a modified Mediterranean diet, eliminating gluten, and limiting sugar and red meat intake. These changes have been relatively easy so far because a lot of it was already part of our diet. But as a partner, the best you can do is to participate. And I still have a ways to go here. Kendall has decided to cut out alcohol almost entirely and I have not practiced solidarity thus far. Participate as much as you can, when you can.

  5. Reduce stress. This is perhaps my biggest challenge. Kendall and I are both strong-willed and opinionated people who enjoy some impassioned debate. But when debate teeters on conflict it can certainly cause stress. Stress is known to have a very negative impact on neuroinflammatory disorders. I’m still learning here so I won’t try to preach any false realities.

  6. Help me, help you. Another thing I’m working on is taking better care of myself. I can think of a micro example and a macro example here. When Kendall was in the hospital, I got my biggest audition of the past several years. Frankly, I didn’t want to do it. I had no sleep and could barely form a coherent sentence. And any moments of clarity I wanted to utilize to digest information. But Kendall didn’t want this. She wanted me to crush my audition. She wanted to know that she wasn’t restricting me in any way. And any success I do have could only benefit both of us. I knew this, I just had trouble practicing it. Needless to say, I got the audition done and submitted, whether or not I wanted to. On a macro level, I am trying to take better care of myself. Get a job with adequate health coverage, eat healthier, and exercise more (some of these I’m just saying as manifestations rather than actualities). Positioning and taking care of myself will only give me more capacity to do it for others.

  7. Lean on your family and friends. Kendall likes to remind me that this diagnosis didn’t just happen to her, it affected everyone who cares about her, myself included. Just as Kendall needs to lean on her network for love and support, so do those who are close to her. I have the good fortune of some family and friends whom I can talk to. If anything, this has brought me closer to a lot of people. Getting a diagnosis may be isolating, but don’t let it continue to isolate you or your partner any further. Reach out! You’ll find countless people who care. We even met others with shared experiences by reaching out, and they offered some of the most insightful advice we have heard.

  8. Their body, their choice. As Kendall has considered different treatments over the last month, I have developed some strong opinions about which treatment seems like the best option. Her doctors presented her with three disease-modifying therapies they viewed as good options for Kendall with one particular favorite. This option, Tysabri, has one pretty serious albeit rare (1/10,000) side effect, PML (Progressive multifocal leukoencephalopathy). PML is deadly. We have looked at every study out there on Tysabri to try and ease any fears and hesitations this scary side effect might cause. But the reality is, it’s scary. I think Tysabri is a fantastic disease-modifying therapy, and it is. But Kendall is just as right to have serious concerns about it. After all, as she points out, when you’re already a statistical outlier, 1/10,000 doesn’t feel impossible. And she is right. You can have an opinion on what you think is best, you can express that opinion, but you can’t force that opinion on your partner. It is their disease, their body, and their choice. 

Again, take this all with a grain of salt, I’m still learning and will continue to learn. Each person and each partner is different, with vastly different needs. We can all strive to do our best and exceed expectations in one arena while falling short in another. This is a marathon, not a sprint. So gear up, because it is a long race ahead. For now, I’ll keep telling dumb jokes and annoying her, it’s what I’m best at.

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