It’s odd to me how easy it is to forget what it feels like to be home again after a long hospital stay. I mean, I’ve been home now for three weeks. It feels like three years. Progress is so slow it often feels like there isn’t any progress at all. It’s funny to me how being in the hospital surrounded by help is something that is so easy to get used to. Then you finally get discharged, the thing you thought you wanted so badly, and all of the sudden you realize how much help you really do need but surprise! All of my very helpful hospital pals (Shay, Caitlyn, Tyler, Andy etc.) aren’t here in my house to jump when I ring. It’s all me now.

Well. That’s not entirely true because I need help with so many things I feel like I’m reaching new levels (depths?) of helpless even as I’m technically living independently. It makes me feel like there should be merit badges for all of the new things I find myself needing assistance to accomplish. You know, like the merit badges they hand out in Boy and Girl Scouts to commemorate accomplishments like building a camp fire and tying some crazy complicated knot. Maybe if there were MS merit badges I’d feel better about needing so much help?

Take showering for example. I’d been showering with the help of a friend for a few months recently before my recent inpatient rehab fiasco and that was almost fun. We talked and laughed and had quality time together that I’d been missing. But now that I’m in pretty bad shape again, I’m showering with the help of my occupational therapist. She’s wonderful and makes showering much less terrifying. She is also hilarious and delightful so it isn’t all bad even with professional help but it feels like another merit badge in my disease experience: Showers Only with Medical Professional.

Then there was the day last week when I finally got out of the house for a ride in my car with my nephew. It was a beautiful sunny day. The top was down. I had my special car ride play list on the stereo. We stopped for ice cream before coming home. I had vanilla with rainbow sprinkles. The sun felt so good on my skin! It was practically perfect. We were only gone for a little over an hour but when we got back I wasn’t able to get up my steps to the front porch. Usually I can make it even when I’m at my worst if someone lifts my leg and places my foot on each step but on this day, I found myself unable to lift myself even with the leg placement assist. It was hot. I was tired. I was tired from a short drive. How is that even possible? Somehow my next-door neighbor happened to be outside so we decided that I’d stay in the wheelchair and Alex and my neighbor Joe would lift me in the chair up the cement steps to the front porch. I might never be the same after that experience. I mean, I’m not the most petite person to begin with and the chair adds another 25 to 30 pounds. My steps are steep – very steep. Alex was behind me tilting the chair up the steps one at a time. Joe was in the front of me lifting the chair. I was sitting on my ass in the chair in a quasi-horizontal angle with my eyes squeezed tightly shut because it was horrific. Each step felt perilous. Those poor guys. They were troopers for sure and no bodily injury was incurred to any of us but, damn. All of the sudden I was the girl who needed to be carried up the stairs in a wheelchair. Another MS merit badge: Requires Two Grown Ass Humans and a Wheelchair to Get Up Steps. Check.

In the hospital I felt all superior because I had been deemed independent which meant I could get out of bed by myself without setting off bed alarms and I was allowed to stand up with my walker to keep from sitting in a wheelchair all day. I had the green light sign outside my door meaning this patient is allowed to do her thing. I could dress myself, do my skincare routine, get myself into bed. I felt like the professional patient for other inpatient rehab patients to admire. Now I’m home and I find myself struggling with the things that felt so easy at inpatient rehab.

For example, I had trouble getting out of my bed again this morning causing that panic feeling that happens when you know you have to pee but your legs are ramrod straight out in front of you on the bed and you’re flat on your back and nothing will move below the waist and holy crap what if you end up peeing the bed and then you’d have to figure out how to get clean sheets on the bed. Nobody wants to earn that MS merit badge: “Needs Assistance to Change Peed-On Sheets.” Somehow, I shimmied my way out of that situation and made it to my wheelchair and then made it to the bathroom and all was generally well but the sheer terror of the Saturday morning stuck in bed situation affected me so much that it took a good couple of hours for my legs to remember how to move like legs. The MS Merit Badge I do not want to earn at this stage in my recovery is “Needs Assistance Getting Her Damn Clothes On.” I barely accomplished this task this morning which was really this afternoon because that’s how long it took me to get out of bed, brush my teeth, do my skincare routine, get dressed and get myself downstairs (using the stairlift of course).

The loss of independence is the hardest part of this MS journey for me. Not being able to drive. Not being able to leave my house without being carried back inside like Cleopatra on her wheeled litter. Not being able to shower alone. Not being able to do simple things like get myself a coffee at Starbucks or go visit my mom at her house for a change instead of her always having to come to my house. The constant need for help. Help with the very most basic functions of life. Being the helped instead of the helper.

I tell myself that it’s ok to be the helped because the very basic truth is, I don’t have any choice in the matter. I need to be ok with accepting help, accepting my current more extensive limitations, because they are a simple fact of my life. I’m back on the rebuilding path. Back to the routine of working so very, very hard just to get a tiny bit of function back. Back to not knowing if it’s realistic to hope that one day I’ll actually be able to do those front porch steps again or if I should start preparing myself for the MS merit badge “Can’t Do Steps No Way No How.”

I know it’s only been three weeks. I honestly was shocked when I realized that. Only three weeks! How could it feel so much longer? I need to give myself grace. Allow myself time and space to recover. Use the tools at my disposal to conserve energy and make my recovery smoother. Focus on the reality that I’m not missing anything out there right now. Life outside of my front door is kind of a hot mess right now. It’s ridiculously hot and humid and that kind of weather is my nemesis. The pandemic continues to affect my town and lots of other places in the world. I’m quite simply not missing anything at all out there but I find myself anxious for the days when my MS merit badges will be for things like:

• Found an Accessible Living Situation
• Mastered Driving with Hand Controls
• Expert Dis-Assembler of Her Own Wheelchair
• Proficient at Seated Marching
• Consistent Ankle Dorsiflexion
• Conqueror of the Ideal Baclofen Pump Setting
• Effective Occasional Rollator User
• Uses Toilets Only in Actual Bathrooms
• Was a Helper and not the Helped
• Left the house for Social Interaction

I want those merit badges real bad.

It comes to mind that I was a terrible Girl Scout when I was a kid. In fact, truth be told, I never made it out of the Brownies. I’m not much of a joiner. I get easily bored of group activities and those uniforms were definitely not very enticing to me. I remember begging my mom not to make me go to the meetings after the first few. She eventually gave in and let me quit.

Alas. I cannot quit having MS therefore I need to continue trying to shift my merit badges from disadvantages to accomplishments whether I really feel like it or not.

At least I’m not forced to wear some ghastly uniform.