My life seems to be moving in fits and starts these days. Two steps forward, one step back.
If you have been following my journey for any length of time, you know this is nothing new for me. It comes with the territory of living with an adult-onset muscle disease. Pick your favorite metaphor – life with this disease is a roller coaster, a series of peaks and valleys, a twisting and turning road. Left, right, up, down – the path is never straight or level. The lack of continuity is often maddening, and always frustrating.
I’ve learned how to keep a level head through it all, but sometimes, life can be too much. Sometimes, no matter how hard I fight, I have to admit defeat. Not a lost war, but a lost battle.
Case in point – I recently had to leave my job. It was a frustrating turn of events that led to my decision, especially since I had finally found a full-time position after graduating from business school a year prior. I had been a marketing contractor at the company since last February, when a new product manager role opened up. I applied and got the job, which started full-time in September. To have benefits, a full salary, and the flexibility to work from home was a big deal for me. It validated all my hard work at the company to date, and made me feel like my decision to get an MBA was justified.
It started out well, however, the demands of the role soon proved formidable, far beyond what my body could realistically give. Between the stress, the long hours, and the frustrations that come with working remotely day after day, it became too much to handle physically. That’s not to say it wasn’t a positive experience. I liked my coworkers, and the work was mostly interesting, but it wasn’t a great fit for my skill set or energy level. After three months, I could see the writing on the wall. Let me rephrase that – I could feel the writing on the wall.
My mind is willing but my body calls the shots these days. For all the progress I’ve made in my life, for everything I have accomplished in the last few years, my body continues to fight every step forward. I don’t want to say my body is holding me back overall, but there are periods of time when it gets its way despite my goals and dreams. Sometimes, no matter how determined I am, the body wins out. I have to listen to it. If I don’t, there are consequences. It’s the only body I get, and I have to take care of it, now more than ever.
In these moments, when life doesn’t go according to plan and I crash and burn in spectacular fashion, I am challenged to be stronger. Not physically, of course (I wish!), but mentally. How I respond to this defeat is what will determine its impact on my life. Do I want it to be a temporary defeat, or permanent? The answer is ultimately up to me.
Now that my days are free, I have done a lot of self-reflection. This is the first time, possibly ever, that I’ve been able to take a proper step back. In doing so, it has brought to the surface a lot of issues that I have been avoiding. Chief among them – I don’t have the strength I used to have. I can’t keep chasing opportunities that I might have been able to handle five years ago, but am unable to now. I have to take care of my body, even if it means surrendering to it once in a while for the sake of my long-term well-being.
Taking a step back has also forced me to take my time in answering the big questions. What am I passionate about? What is my purpose? What can I picture myself doing every day that will give me meaning and joy? I am tired of feeling like life is draining from my soul, and it’s on me to fix that.
There is no simple answer to these questions, but I have found some answers at least. In my next post, I’ll let you in on what I’ve learned.
Sidewalks and Stairwells 
Dear Mr. S&S: I have a grand daughter who is six. When she was three years old she began to dress up and play act in dramas with imaginary princesses and demons and monsters. When she was coming under assault from the various and many big scarry things she would cry out “BAAAH!!”I offer this to you as a useful outlet when frustration mounts and all is out of control. I tried it and it works. Now I say Baaah! after dropping, forgetting or just barking my toe on something in the shower stall. Please make sure you yell out the word in the right way.It is not baa with a tenor voice and a kind of a stutter. No, that is for sheep.It is not Bah! declaimed in a harsh and denigrating way. No that is for the Scrooges.In our case you want to find a high register in your voice when yelling the word. Then remember to add a softened Louis ‘Satchmo’ Armstrong sort of rasp. This produces the appropriate effect of announcing you have fallen into an alien universe and are surrounded by chaotic and threatening forces everywhere.I started saying it in the house to or near my wife. Once recently, Olivia the grand daughter saw and heard me cry out ‘baah!’ and looked at me as if I did something unknown and meaningless to her. Like Peter Pan’s friends who lost their ability to fly, she passed out of toddler fantasy play and forgot all about it. I am 75 and sympathize with your struggle. As an aging guy who had a body that behaved rather well and now shows increasing signs of approaching, like a toaster built to pop 1,500 times, the sticky end of my duty cycle.I look out the window. I try to find some sky. Above there moves in solemn majestic calm the billowing clouds. It is like something grand is happening up there even if its just a mass of vapor. But I find it calming. After a good BAAAH!! blast, that is, to clear out the dread and weariness.If all else fails, un pocitto oracion.Stay your course,Ed T
From: Sidewalks and Stairwells To: ejturbert@snet.net Sent: Monday, February 12, 2018 6:46 PM Subject: [New post] Crash and Burn #yiv4938449548 a:hover {color:red;}#yiv4938449548 a {text-decoration:none;color:#0088cc;}#yiv4938449548 a.yiv4938449548primaryactionlink:link, #yiv4938449548 a.yiv4938449548primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv4938449548 a.yiv4938449548primaryactionlink:hover, #yiv4938449548 a.yiv4938449548primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv4938449548 WordPress.com | Chris Anselmo posted: “My life seems to be moving in fits and starts these days. Two steps forward, one step back.If you have been following my journey for any length of time, you know this is nothing new for me. It comes with the territory of living with an adult-onset muscl” | |
Thanks Ed. I will try that next time!
So sorry Chris that you had to resign for reasons outside your control. You are such a resilient being and I am sure that you’ll be able to find that niche you need to fulfil your soul and provide income..I look forward to hearing what you have learnt next time 🙂
Thanks Leanne! So it is with LGMD..ups and downs!
Hey Chris,
In spite of your temporary setback with your new job, this was a really well-written article.
I am interested as you now “take a step back” what insights you gain from all of the self-reflection. I hope you go from “crash and burn” to “burning passion” in the coming months…and…woo! Spring training for baseball is right around the corner. We survived the offseason!
All the best.
Thanks Yoni.
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Hi Chris,
Oh boy! BAAAAAAH! Hang tight friend and you will move forward with grace and positivity! I feel it in your soul.
I see you helping others suffering like yourself. Finding a group of folks who need your friendship and positivity and perseverance. You have a voice, use it…Find an organization who needs your spirit and help…maybe volunteerism is the way to keep your psychological self in tact?
I am rooting for you Chris! Never give up…be with other people in some way! It helps! LINDA~
Thanks Linda!