Finding My Way Back To Myself

Last year, I didn’t just lose my ability to walk unassisted, all my money, my ability to work, and my faith in people. I lost myself too, and I didn’t even realize until recently.

Someone I hadn’t seen in quite awhile saw me recently with my cane. I could tell my cane upset them. When I asked why they were so bothered, you know what they said?

“It makes me sad because you were such a force of nature.”

It wasn’t significant at the time. I didn’t spend a lot of time thinking about the conversation because I was busy with other things, but it planted a little seed that part of my brain kept chewing on for days.

I can’t fault anyone who feels the way my old friend did, because last year, I lost myself.

No one expects to wake up one morning disabled. There’s no handbook. Hell, I couldn’t even get medical help for nearly 6 months.

So the big thing, of course, is learning to cope with the disabilities. You learn to compensate and adapt. You learn to walk again and get yourself up and down the stairs. Because it’s not safe, you give up driving. Recovery and physiotherapy become your only focus. You cry for the loss of your independence and your sense of safety in the world. When you realize you’ve lost everything and you can’t afford the treatment for a disease you have through no fault of your own, you’ll experience a crushing depression You spend time angry because life isn’t fair and why you and why can’t you ever catch a break?

It’s a lot. (1 star, do not recommend.)

Since there’s no handbook on how to cope with being very suddenly physically disabled, there’s certainly no handbook that warns your personality is affected too.

I went from not allowing vulnerability, to feeling too vulnerable. I was a giant exposed nerve. Everything made me cry. I was timid and tentative because now who was I? How did I fit into the world now? I watched everything I’d worked for crumble into nothing. My whole life was upended. I was easily hurt, easily frightened, and easily pissed off when confronted with stupidity. My frustration threshold had never been great, now it was in the subbasement.

Most of my life has been filled with bad feelings, or no feelings. (Because if all you ever feel is bad, you learn to not feel at all, or you wrap yourself in anger because it’s a ‘safer’ emotion) Recovering from a lifetime of misery hasn’t been easy. I have the most amazing husband in the world but I’ve had to train my brain and nervous system that I’m in a safe place now and have been for quite some time but I have decades of conditioning to undo so it’s an ongoing process.

In the past couple of years, I’ve lost everything, including myself. I’ve spent my life people-pleasing and achieving and being codependent, trying to feel safe and happy. I was super responsible and put myself last, making all the ‘right’ decisions to try and quell my anxiety and feel secure. Subconsciously, I thought that if I was really really nice and super accommodating, people wouldn’t be a threat to me. I believed in Karma and that being a hard worker and a good person would eventually pay off.

The majority of what I believed was wrong so I’m over it, and I don’t mean that in a bad way.

I just mean, you can do everything right and still lose so I don’t want to spend anymore time or energy worrying about stuff that isn’t in my control anyway. Look at where all my hard work and ‘good’ decision making and responsibility got me! There’s tons of people whose lives have been upended because of a pandemic that started across the world. Or they just went to work at the WTC all those years ago. Or got on an airplane that crashed into the Pacific, or were born with cancer or a serious medical defect.

What if this is as good as it gets? If I’m being honest, it’s highly unlikely my life is going to get easier as I age with MS. So if this is as good as it gets, if I can make all the right decisions and still lose, then the only thing I really have control over is my present moment.

I choose to be happy in the present.

Life is random and filled with bad things so maybe I’m better off finding happy moments in the present.

I’ve reached a point where I don’t care anymore. I mean that in a peaceful way, not the jump off the cliff way. I played by all ‘the rules’ and yet, here we are. So now I’m just doing the best I can and man, have my standards and expectations become really low. I have no one to impress, no one to fix, no one I’m in competition with except myself. It’s all about me and I’m okay with it. So is my husband, and since he and I are on board, I don’t care what anyone else has to say. As Tabitha Brown says, “That’s my business!”

Now I just want to be happy in the moment and get back to myself, the me I was when I was a force to be reckoned with.

A few days ago, I took my giant dog for a walk after dark, by myself. I was done feeling like I’m not allowed to be out in the world as a disabled person. I was done being afraid that I’m an easy target so I mustn’t leave my house alone after dark.

I haven’t been out of my house alone after sunset in nearly a year.

As someone with PTSD and a survivor of multiple incidents of violence, of course I was afraid to be out of my house once I became disabled and needed a cane.

Last week I thought, ‘I sure wish I could go for a walk’ at about nine o’clock at night. The ‘old’ me would have just gone for a walk. The ‘old’ me did stuff like that, and I’d already decided to get back to doing stuff like the ‘old’ me used to.

I also realized that my cane is a potential weapon and I’m not that easy of a target (despite what my PTSD brain was screaming at me) so I clipped the leash on the dog and went for a walk. It was glorious. I felt like calling out to people, “Hey, look at me! I’m out of the house, walking my dog, with my cane!”

I signed up for another cycling challenge. I’m expanding one of my businesses, and I’m launching a new one in a few weeks.

Because I want to, and because I can.

Not to make a bunch of money or because I think either is necessarily going to be wildly successful. My new endeavours are just things that make me really happy and make my brain light up like a pinball machine.

One of my new mantras is, “This isn’t worth my brain stem.”

I’m over hurting myself with stress. I’m over anxiety and misery and feeling nervous about the world and even subjecting myself to crap that aggravates me. I’d rather just do my own thing and since I can’t control what happens in life, I figure I might as well do what makes me happy today because an asteroid could take me out tomorrow, or as Dr. FeelGood said, I could wake up blind. (Which will make it hard to see the asteroid.)

I finally, almost a year later, feel like myself again. I’m done with the tentative approach to my life. I have a little of my fire back, if not the anxiety-induced intensity. There are still things I can and will accomplish, and I’m going to do them on my terms. But more than that, I want to be content. I want to find the fun in life. I want to find the fun in me. My new goal is to find some joy, and I’m getting better at being present for those little moments that make me happy.

Happiness isn’t a permanent state of being in my opinion, but if I collect enough happy moments throughout the day, maybe my brain can achieve contentment?

Lord knows I have no money with which to buy any happiness or pay for a fun experience but I found a tiny little strawberry the other day in my garden and I was over the moon. Seeing the bees fly around my wildflowers makes me happy. Putting on fuzzy socks when the nights get cold makes me happy. I feel contentment when I’m chopping vegetables for dinner because cooking dinner is less a ‘to do’ now and more of an experience.

Only in the last little while have I been able to notice the magickal little moments in my everyday life. I think the key is that I’m just in the moment. I don’t know what tomorrow is going to bring, or next year, or really anything past this present moment so that’s where I’m trying to live.

Maybe the past almost year of daily yoga has helped me become mindful, but it’s relatively new. I was always rushing to get through my huge to-do list, always trying to get to the next thing, the next accomplishment, the next achievement, the next month, the next year.

I was so busy planning my life I wasn’t really living it.

When my brain broke, I reverted to the long ago version of myself, the shadow version that had to survive in a dangerous, abusive environment where the roof could cave in at anytime. The timid one, the one who tried really hard to stay under the radar because if you got on the radar you were going to pay. The one who appeased and cajoled and submitted and would do anything to avoid conflict because conflict was excruciating and left wounds and scars.

I don’t hate that version of myself anymore. She did what she had to do to survive and get out. She’s very good at ‘sucking it up’ and carrying on. She’s very good at assessing threat, if a little overzealous. My shadow Stephani is always going to be a part of me. My shadow adapts, and that comes in handy when, for example, you wake up with intermittent paralysis and inability to speak. But I don’t want to be her anymore. I don’t want her in charge of making the decisions because if she is, I’ll just go to ground and never interact with the outside world again.

I’m happy to feel like myself again, with goals and a couple plans and a fitness challenge or two to accomplish. I’m even happier that I feel calmer about all of it.

I’m still a force of nature, I just have a little extra swagger when I walk.

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We’re still several thousand dollars short for the treatment that might help me walk unassisted again. If you’d like to help in anyway, click here. Thank you to everyone who has donated and shared the fundraising campaign, I appreciate you so much 🙂