MS Is My Full Time Job

By Jennifer Hochgesang, Guest Columnist

I work full time. I mean really 24/7 full time.

A tremendous amount is required of me physically, mentally and ultimately spiritually. I often have to travel on short notice away from my young daughter. These trips always deplete me. And I don’t get very much sleep.

Even though I do this every single day and have for years, I’m constantly being told by pretty much everyone that I don’t really know what I’m talking about and I should listen to them.

I have to deal with big egos on these trips and quite literally they have a hand over me. I have a certain attire that I’m required to wear, and it’s not to make life easier for me, but for them. The only way I get to come home is when I nod my head in agreement and promise to continue working together on our “common” problem.

I often come back home with scars from my travels and even more often “little presents.” My daughter would like to shake them up and down, but I don’t think it’s safe so I put them up high.

The job is so exhausting that I’ve seen my doctor for medications to combat the fatigue, otherwise I wouldn’t get anything done. The extent of this is hard to explain to my friends and neighbors and they begin to make silent judgements.

These judgements grow larger when I cannot go hiking with the kids out in the sun on a 90-degree day. My job won’t let me, I say. They question it at first. But over time they just stop asking and if I see them at a school function, they will just nod my way or sometimes completely ignore me.

 JENNIFER HOCHGESANG

JENNIFER HOCHGESANG

There was one time I thought I had made a great new friend. Her daughter was in the same class as my daughter. She was super funny and had her own struggles -- some of which she began to share, so I did as well. She was very artistic, intelligent and seemed to genuinely care.

As time went on we had a couple of play dates, went out to dinner with our girls, and then out of the blue I had to go on an emergency trip. I was so frustrated and sick of them. She told me she would take my daughter to gymnastics and Girl Scouts and not to worry.

Well, it was a long trip and three days after I got home I had to go again. I didn’t share too much about my trips to her. Why would she want to hear all the boring details? But then suddenly, my friend and her daughter weren’t at gymnastics. I texted her. She had switched days. I asked her why, wondering if we could switch as well. She was evasive, and I knew then my work was too much for her.

Part of me wanted to call and scream. If this is too much for you, how do you think I feel?

I want a regular job more than anything. Sometimes it feels like people think I want this job, as if I created it myself. They don’t realize that I had no choice in the matter.  But this is what I have to do and accept that I can’t have friends like other people.

I work seven days a week all day long. As I said, my job is demanding. It requires physical endurance, mental fortitude and spiritual grounding. Just in the last month, it has set new requirements.  Now I can’t drive, and I’m stuck at home in the winter in excruciating pain.

Mentally, my job takes names from me, messes with my ability to form sentences when I speak, and how to store and retrieve memories correctly. Spiritually, my job requires a belief in something -- something to hold onto -- whether it be a God or Goddess, a dog that has passed away, or a tree outside the window.

Without that, the job will beat you up past the point of understanding. You will be left with nothing:  no friends, no family, no wife or husband, no will, and no ability to laugh at life. Ultimately it strips away your humanity and your search for happiness.

If you can ground yourself and see past the pain, the falling and the shaking, and the numbness and confusion, you will not only survive -- you will still be able to strive for meaning in your life.

I work for MS. It’s sometimes better known as multiple sclerosis. Here is my schedule:

Monday: MS
Tuesday: MS
Wednesday: MS
Thursday: MS
Friday: MS
Saturday: MS
Sunday: MS

Do you have anybody in your life that works at MS like me or is in a similar place? If they say they are unemployed, they just mean they aren’t getting paid for their work. If you could trade jobs with them, would you? If so, would you trade with me first? My daughter needs me.

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Jennifer Hochgesang lives in Illinois. In addition to multiple sclerosis, Jennifer has endometriosis and trigeminal neuralgia. She is the mother of a beautifully kind and precious 7-year old daughter.

Jennifer proudly supports myMSteam, an online social network for people living with multiple sclerosis, and Living With Facial Pain, an online support group for people living with facial pain.

Pain News Network invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.