Oh no, not I, I will survive

So I’m done with my job now, in what ended as a spectacular failure. And I am so disappointed with the way everything ended that I can’t even put it into words.

I’ve learned that there is no such thing as a reliable “sign” of whether something will be good or bad, no matter how much we want to find one. Because I really thought I had found every possible sign that this was the right job for me and I really believed I’d work there for at least 10 years.

I have overcome some amazing odds in my lifetime, like starting college with three kids under 6 and no childcare and going on to graduate magna cum laude; moving down from Michigan to Texas by myself on a small amount of crowdfunded money and somehow making a way to get my husband and kids here; and the fact that my very first-ever published writing anywhere was in a real-life book.

But I have also learned that despite my amazing successes in life, my illness has officially, definitively clipped my wings. I felt like I had so much to prove with this job. When I was younger, I quit a lot of jobs in relatively short succession. I was determined to stick this one out. In fact, I told everyone that this was my dream job, which it was. I always wanted a full-time, in-office job writing about medicine. I absolutely loved the work I did.

Despite my determination, my body betrayed me in ways more stunning and swift than I ever imagined possible. I had fully recovered from the devastating MS relapse I had last September, thanks to months of physical and occupational therapy. I had regained my ability to write with a pen, which I had lost for several months.

Then the job changed all that. My health started declining nearly immediately.

By the second week on the job, I realized that the team itself was not as awesome as I thought in the interview. It was a fairly unhealthy work environment in which I got zero training and was expected to learn by failure instead, which was too stressful for me to handle. I got the sinking feeling early on that I didn’t fit in, which tended to become self-perpetuating. The less I felt like I fit in, the more I kept to myself, ensuring the continuation of the problem. And stress makes my health worse.

Despite all this, I kept soldiering on. I wanted this job more than any other that I’ve had in my life. I was more than desperate to make it work.

But my illness came back with a vengeance, due to not getting as much sleep as I needed and the fact that the job was much more stressful than it appeared during the interview. The fact that I had so little work to do should have made it less stressful too, but the lack of training on the things I admitted upfront I didn’t know how to do made it very stressful — and that always takes a toll on me.

Add to that the fact that I didn’t fit in with my team and I just spent every day feeling worse, both physically and mentally.

My body fought back and it was cumulative. From the first week, I had to come home from work and take a nap after dinner, waking up only to spend an hour a night with my husband before going back to bed. My relationships with both my husband and kids started to suffer because I was always asleep or wiped out.

Within three weeks, I wasn’t recovering over the weekends either. I tried taking entire weekend days in which I didn’t even leave the house in hopes that I would recuperate, even though that was the only time I had during the week for anything I enjoyed.

I know about the worst-case scenarios of multiple sclerosis, particularly the secondary-progressive version that I have (which is the type where you’re unlikely to ever get better, despite what some rare individuals say otherwise.)

But then I started to decline so quickly at work that I actually could see myself getting really bad — and I could see it happening quickly.

I started getting 30-second periods when I would completely lose my sight, even while I was at work. It was pretty terrifying to go temporarily blind on a regular basis.

My balance got worse. By the end of each week, my walking would be extremely unsteady and my foot drop would get more pronounced. I was running into walls and losing my balance and couldn’t walk in a straight line.

I was essentially doing just as badly as I was while I was recovering from my relapse last fall, which the doctors described as nearly indistinguishable from a stroke.

So even though I had so much to prove, I couldn’t ultimately stick it out.

I am mad at my body for taking my choices away from me. This was my dream job – or at least the work was my dream, even if I worked with some rude and unprofessional people. Even just five years ago, I would have stayed, stirred up shit when necessary to make improvements in the department (and I could already see many ways in which it was necessary) and outlasted all of the unprofessional people until they quit or got fired. But now I can’t do it at all. They outlasted me and I’m the one who looks bad.

Yet ironically, even though my health was falling apart in every other way, I could still write great articles. Writing was the core part of me that remained, the skill I didn’t lose, no matter how completely my brain and body were otherwise shutting down.

That’s always been the case: even while hospitalized last year with my worst relapse ever, I still wrote articles and met my deadlines (even if it took me twice as long to type and to coordinate my thoughts.)

I didn’t want to be a freelancer as my only source of income anymore. Even though me working at home works a lot better for our family and we’re used to it, I wanted to pursue a full-time career outside the home. And now I just don’t have that choice.

To make matters worse, I approached some of my former clients already to see if they needed more work and they don’t.

I don’t know how I’ll get more money now. I’m going to have to go back to looking for brand-new clients again, and that just sounds exhausting and discouraging. I was doing so well with getting new work before starting this job and I lost that momentum.

I looked back through my Instagram account at my life in the past couple years when I was working from home and doing so gave me moments of hope. I saw that my life was overall pretty decent. We had everything we needed. We found a beautiful house to live in that was in way better condition than you normally find in our price range. We managed to get a new car for me.

I had clients coming to me for work throughout the year. Some I only worked with for a few months and then they stepped out of the picture. I don’t know if it’s that I didn’t do a good job or they just decided they didn’t need more work done (my insecurity always tells me it’s the former, but I know the nature of freelance work can be irregular.) The point is that even though my work was irregular, there was always enough of it. I always got a new client just in time.

So maybe the universe is telling me to rest. I think it’s going to take me a while to recover from what I’ve just been through. I have to see if I can get my health back to where it was just six weeks ago.

And I have to figure out how to adjust to the new reality of my life that I can’t work full-time even if I want to, and I don’t know if that means going on disability or trying harder to get well or some other possibility.

This is really not what I wanted or expected out of my life.

2 Comments

  1. This was one of the absolute BEST posts I have ever read! It was SO full of truth, passion, heart ache, determination and power you are not realizing that you still have. I know the whole thing with the job was painful, but sometimes in life things we never thought would happen, happen for a reason that we may never know! My job is NOT my dream job at all and I work with a bunch of very immature people that LOVE to talk shit about me because of my illness. It was really hurtful back in October when I had the worst relapse I have ever had since being diagnosed close to 18 years ago. A person I “thought” was a friend was saying some really hurtful things about me because she knew what my fears were with this illness. Some people do not deserve to have us in their lives because they are nothing but toxic to our health. You are a pretty amazing person and I am truly glad that I have the opportunity to get to know you and follow your journey.
    Please promise me one thing, never give up because you are spectacular and an brilliant writer. MS can not control us, but we can do our best to control it the best we can! Please know that even though we do not live close to each other and have not met in person, I am here for you if you ever need to vent. You can email me directly anytime you need to get those feelings out and I will respond as quickly as I can. We can fight this mean illness together! Oh, my email address is alyssabowman81@gmail.com.
    Sending you nothing but positive vibes and love!

    Like

  2. Thank you so much for the positive vibes and love, Alyssa! I am fighting my hardest not to give up. At least I will always write for as long as I’m able! I’m sorry that you too have dealt with nastiness from people at work because this disease is already hard enough to have! Hope you have a relaxing and pain-free weekend.

    Like

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