Facing MS

Emily Lackey and Andrew Dimmer interviewed Dory Jolin for a writing assignment. Dory’s story speaks of resilience and healing in the face of chronic illness.

Two years ago, I was a busy mom of three. I schooled my children at home. I was running my own business and working as a life coach and a birth doula. Just like everyone else, I had good days and bad days, busy days and quiet days. Life was hectic, but it was normal. I could never have foreseen what was just around the corner. Everyone knows that life has a way of throwing obstacles in your path, but we never think of them actually happening to us.

In the fall of 2016, I found myself in the middle of a life-changing experience. I awoke one day feeling eye pain and visual disturbance. It took me some time to work through the confusion of it all, to realize that I had completely lost sight in my left eye. I immediately rushed to my optometrist who was unable to give a diagnosis and referred me to a retina specialist. I never made it to the specialist though. The pain in my eye was too much to handle, so I went to the emergency room. I was frightened; I thought I was going blind. The doctors at the emergency room continually questioned me as to whether any of my family members had any neurological disorders. I scoured my brain, but couldn’t remember anything. It frightened me that they kept bringing up neurological disorders. Finally, they sent me home and told me to rest, but I was still worried. I went to their office a few days later to get checked again, and they thought I had a condition called optic neuritis, which is often associated with multiple sclerosis (MS). They sent me for further testing and I was officially diagnosed with MS. It didn’t seem as scary to me at the time, since my eye was getting better. But since that diagnosis I’ve had to learn a lot about myself and resilience in the face of disease.

I’ve had to deal with many everyday challenges that I never expected to encounter. MS affects everyone differently and to different degrees, but, being a neurological condition, it can eventually cause difficulties with everything from walking to talking, chewing to swallowing, sleeping to using the toilet. One simple example for me is taking a shower. No one thinks that showering will someday be difficult, but for me, it is. The temperatures from the shower throw off my balance and give my nervous system a hard time. In general, I tire out easily and some days even just moving from Point A to Point B is a challenge for me.

Another struggle with having a chronic disease is dealing with other people’s perceptions of you. It’s difficult for me because my disease doesn’t show on the outside. We can never really know how much a person is suffering or what their struggles are just by looking at them. Unless someone has the disease, there is no way for people to completely understand all the little challenges that happen every day. I had one time where I was walking slowly through a crowd and this man yelled at me for going too slow. It’s not that I’m being lazy when I move slowly or am unable to finish something, it’s just that I need a break. That’s the worst thing that someone has said out loud to me personally, but it’s still extremely upsetting.

Even though having an MS diagnosis can seem devastating and can make almost every aspect of my life more difficult, I have found bits of hope even in the hardest of times. My first little spot of hope was adaptive yoga. It’s specifically made for people with MS. It’s an amazing class, they’re like my support group. They teach their class like we don’t even have any disease. They understand that I’m not broken and help me learn ways to keep my body in shape and to decrease pain. It’s been one of my most important tools in helping me to bounce back from really difficult or challenging days. I also use acupuncture to calm my nerves, and herbal teas to calm me down mentally. Playing games or watching movies with my kids is another way that I take my mind off my problems. It’s also helpful for me to speak with my chronic diseases therapist. It’s nice to have someone who will listen to me without judgement, and she helps me find my laughter. Staying positive is one of the keys to helping me through hard times.

Though MS has brought me many painful experiences, it has also brought me some positive ones. Yoga has been so important to my overall well-being after MS that I ultimately became a yoga therapist myself to help others with neurological and autoimmune diseases. Helping others is one of the most healing practices in the world. My challenges with MS have also inspired me to write two journaling books to help others with MS and other chronic illnesses. Having a chronic disease has also given me a new perspective on life. I have learned not to stress out about things that used to bother me, because I know it is a joy to simply live in the moment. I never take the good or happy moments for granted, instead, I work to be grateful for all the good that is around me. While overcoming this disease, I have learned that I am much stronger in my mind, body, and spirit than I think. When people are being judgmental, they have all of their past experiences attached to their perceptions, and those experiences roll over to their perception of you. I wish people could learn to let go of their expectations for others and just allow them to be themselves. I believe that if people could learn to see people without judgement, then we would all live better lives.