What I Fear

Last week, I couldn’t open a jar of salsa. I tried for three days. I banged it upside down, I Googled tricks, popped the seal, ran hot water. Nothing worked. Over the last couple months, I’ve struggled opening jars. I could eventually open them, but it has been harder and harder. My hands are weak and numb. This particular jar may have been extra tight, but this was not new. It wasn’t a fluke. It’s MS. I didn’t cry or feel sorry for myself. I was frustrated and annoyed, for sure. And, I laughed at myself a little. I thought, okay, of all the things that I may not be able to do because of MS, opening a jar is not that big of a deal. Eventually, someone opened the jar for me and my parents bought me a jar opener.

MS can effect people in many different ways. Mobility issues, vision loss, fatigue, pain, cognitive impairment, depression, bladder and bowel disfunction, swallowing problems, itching, pain, and much more. People with MS may experience some or all of these symptoms, at different times, and to varying degrees. MS is a progressive disease. So, over time, you may develop new symptoms or worsening symptoms. You may start walking with a limp and have trouble walking long distances, later fall and need a cane, and eventually need a wheelchair. It is different for everyone.

Because MS is progressive, you worry about what will happen in the future. These fears vary from person to person. A musician or a surgeon may be most concerned about not being able to use their hands, while an athlete may worry about not being able to use their legs. I play this pointless game in my head: if I could chose which MS disabilities I will have, what would I choose? You know, like that “would you rather” game kids play: would you rather have a third nipple or an extra toe? Go ahead, Google “would you rather.” Have fun! I ask myself, would you rather be in a wheel chair or not be able to see? And, on and on. I know it sounds a little dark, but for me, it helps put things in perspective. Like, would you rather not be able to ever open a jar again or need a catheter? See, not being able to open a jar is not that big of a deal. Well, for me. Someone might disagree. There are things I fear. Some big, some small. Some have come and gone. Others, I have yet to imagine.

I’m not an athlete. I played a few sports when I was young. In junior high I made the volleyball team each year, but just barely. I made the cut through determination more than talent, and certainly not due to my height. I danced for years, but not competitively. I was a varsity cheerleader throughout high school, which is more of a testament to performance than athletic ability. As an adult, I’ve had a love-hate relationship with the gym. I will go religiously, work with trainers, and then avoid it for months or years. COVID has not been helpful in that regard. I enjoy a walk or hike from time to time. But, I have no desire to run. Like, at all.

My vision has always been terrible. I had an eye patch and huge coke-bottle glasses when I was three. I had LASIK in my early 20’s, and was back to reading glasses by 30. I’ve never had 20-20 vision. Not with glasses. Not with contacts. Not after LASIK.

But, I’ve always been smart. I convinced my teacher in elementary school to let a few of us go to the library and work through the math book on our own because we were bored in class. I led a similar rebellion in junior high. I was in honors classes, went to state in debate, and completed two years of college in high school. I graduated college early and went to a highly ranked law school, where I graduated with honors. My intelligence has always been a huge part of my identity and self-worth, and it still is. I’ve been an attorney for seventeen years and built a successful career. I care deeply about about my work. It gives me meaning and purpose.

I don’t fear being in a wheelchair. In the beginning, it was one of my biggest fears. I think that’s the case for a lot of newly diagnosed people and one of the first things people associate with MS. After having MS for a while and learning more about it, it’s not something I’m afraid of any more. Partly because it doesn’t seem very likely. Without treatment, about one-third of people diagnosed with MS will need a wheelchair within 20 years. Okay, one-third is not a small number, but it’s not huge. There have been huge improvements in MS treatments that will delay and decrease disability. Also, I don’t have spinal lesions, which are associated with mobility issues. Mine are in my brain and optic nerve. Even if I did need a wheelchair, it wouldn’t be that bad. I mean, if I can avoid it, I will. That’s why I inject myself three times a week, take vitamins, and see a neurologist. But, if I had to use a wheelchair, or cane, or other mobility aid, I would still be able to work, travel, and enjoy life. It would definitely impact my life, but it’s not the scariest thing.

My first symptom of MS was vision loss. It was very scary and temporarily effected my ability to drive and work. At the time, I was really afraid of permanent vision loss. But, after several months, my vision mostly recovered. The font sizes on my phone and computer are ridiculously large, I had to trade contacts for transition lenses, and driving at night is a little harder. But, I live in front of screens all day and shuttle my son and myself around with no problem. Optic neuritis is very common in MS. It can result in temporary vision loss and permanent vision impairment. Blindness is possible, but rare. My vision has been effected by MS and I suspect it will be again. I get a little nervous every time my vision is blurry. But, if vision loss is temporary and impairments are manageable, I will adapt.

Not being able to drive worries me. Driving is independence. I drive my son to school and sports, I drive to work, or just to get out of the house. There’s nothing like driving on a sunning day, coffee in hand, singing at the top of your lungs. Having mobility, vision, or cognitive issues that mean I can’t drive would significantly impact my life. But, and I’ve thought about this, there are ways to manage. I could move to the city, near grocery stores, restaurants, and coffee shops. There is Uber. And, as we all now know, there is grocery delivery.

What I’m most afraid of is cognitive impairment. Memory loss. Forgetting words. Not being able to read, analyze, argue, and write. Not being able to do my job well. Not being able to work. I’m afraid of not being able to work not only because of the financial impacts and the loss of health insurance, but because of the loss of identity. The scariest MS statistic that I’ve read is that 70% of people with MS leave the workforce within 10 years of their diagnosis. That is terrifying. People are unable to work for physical reasons, fatigue, and cognitive impairment. Even outside of work, my mind is my identity. I love card and board games and am very competitive. I am passionate about social justice issues. I read, debate, and volunteer. I love helping my son with school, having deep conversations, and teaching him lessons. My favorite pastimes are witty banter, sarcasm, and talking shit. My biggest character flaw is being a know-it-all. Well, that’s what some people would say. What scares me most is losing that part of me that is thinking two steps ahead, effortlessly pulling facts from files in my mind, putting it together at lightening speed, and spitting it back perfectly organized, timed, and delivered.

My first symptoms were over a year ago. The vision loss, side effects from steroids, and doctor’s appointments impacted my ability to work for a few weeks. I eased back into work. After a few months, as my vision improved, I was back to full-speed, firing on all cylinders. Since then, I have taken on more responsibility and my career has continued to grow. Sometimes I’m in awe of all I am able to accomplish. But, every time I forget something or stumble over my words, there is a little pang of fear.

MS is effecting my body. My legs are stiff. Sometimes I walk with a limp. Parts of my body go numb or feel like they’re burning. I have muscle spasms and aches and pains. My vision is blurry when I’m hot or stressed. But, none of that really scares me. What I fear most is cognitive impairment. Not being able to work. Losing myself.

What do you fear?

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