Kids are still asleep so I’m taking a minute to type up a blog. Damian Washington’s Interview with Brittney Quiroz of A Hot MS popped up on my feed this morning and started the day out right, getting inspired. Damian Washington talks to Brittney about her experience with MS, her blog, and how she still rocks her life using a mobility aid, without apologizing to others for needing it.
It took me a long time to get over that trying to apologize for needing a mobility aid. I first started walking with a cane two years after my diagnosis, when I was 22. Besides having to think about how to walk, you MSers know what I’m talking about, the other thing that was constantly on my brain was what does everyone thing of me. I was 22, but I looked like 14 cause I’ve got a little, young face, not a person people expected to see with a cane. I loved nothing more than putting on my headphones and iPod and listening to some music while I walked back to my apartment from my college classes at BYU. Then MS hit me again, with a relapse bringing gait difficulty, my proprioception was all messed up. I withdrew from classes cause it just got too hard. I tried to keep going but after a week of struggling with my gait, I was trying to stay in my classes. In my apartment I popped in a tai chi dvd my mom had sent me trying to get some relief. I can remember perfectly, the narrator saying stretch yourself up in a standing position, imagine that you are suspended from the ceiling from a rope. Instead of a calm relief of spine relaxing into place my back buckled forward and bended me into an L shape. That was weird, let me try this again. SNAP, back to the L and then it didn’t stop. It just kept going. My back was spasming and I made my way to the bedroom. I called up my friend and she and her husband came to take me to the student health center. I had my grandma’s cane that I borrowed. My grandfather had spray painted the staff white a long time back, it wasn’t a very sexy cane and I sure as hell didn’t feel sexy with my back bent completely over like I was a severely disabled 95 year old. That was how I felt and though the spasms, the seizure like violent spasms that rocked my body, came and went they marked my psyche. I didn’t know when they were going to happen. I was walking with a cane, though I came up with a cool cane collection, I still constantly thought “what are other people thinking.” I went back home to North Carolina. When I was out in social situations talking philosophy with my parents’ crowd I would feel myself get drawn back into that tunnel within myself and I would silently pray that I wouldn’t start spasming. All my awareness went into that, fighting back the spasms.
So I’ve learned to be patient with myself and my body. This confidence and patience took ten years to build. However, when I see a chick like A Hot MS rock her cane with confidence I rejoice. I also think, if I had seen someone like her ten years ago, would it have made it easier. It’s beyond awesome that we have this community to share our ups and downs with now. I came into an MS world where that community was smaller, 200,000 in the US, and we were spread out. Those of us online didn’t have a lot to draw from. I found one blog of a cool cat, The Wheelchair Kamikaze in New York and I drew from him. I started my own blog, but I didn’t know how to get it out there. My MS struggle was a mostly private one.
Flash forward to 2018, a second relapse bringing a pervasive partial numbness in my limbs that doesn’t come and go. Its there constantly, sometimes around 40 percent, sometimes more. I became active on a chat app, then MS Buddy, now MS Healthline. Now I get to be an ambassador for that awesome app that kinda saved my life. I found cool people like Damian Washington, when looking for some courage going into my first Ocrevus infusion. Then the flood gates opened and I found more and more people. At the same time I started posting to my IG account, sharing my adventures in my return to disability. Though there have been days that I have cried hard, there are days that I rejoice too. I rejoice that I’m not in this alone.
Things have gotten rough for the whole word. Covid19 is scary as hell and sometimes I feel like I’m in the calm before the storm. Now its normal that I stay in, cause everyone else is. It’s not something to feel stigmatized against, I’m doing my part to keep my family and I safe and help the spreed. Yesterday was my son’s fourth birthday. My sister in law bought decorations and dropped them off at the house. I decorated and baked a Bob’s Red Mill gluten free brownie mix. (Tip: if you cut the butter to like two thirds what it calls for, and replace the rest with full fat canned cold coconut milk, it turns out much more cake like, perfect for a bday. )
But there was a point where it just got to be a little overwhelming. We did a group FaceTime and after my kids were playing with their presents and having a good time. However, I had the feeling I just had to get out. I went in the garage and got my pink Vive walker. I threw my cell phone, cannabis vape pen, and garage door opener in the pouch. I walk in my house without a cane most of the time. Outside though, sometimes my numbness increases the more I walk, and if I just have a cane it can be hard to get home. Plus, a cane sometimes kinda throws off the rhythm of my walk, just being one sided. Don’t get me wrong, I love my ergonomic cane, but if I’m going for a good walk, the rollator/walker is the way to go. It preserves my energy so I can go farther. I walked to the park and sat down to rest and looked at people enjoying their day outside. I did get slightly worried at the fact that people were crossing the yellow tape and kids playing on the playground, cause God I want the spread of Covid19 to stow to a lilt. I stayed away from others, but without my kids I was able to be a little more observant of others reactions with me and my walker. I see it so differently now, than I did fourteen years ago. I see people with kind looks instead of puzzled ones. I still apologize a little bit, like when a mom of three has all her kids on the bikes and we trying to figure out the right of way social distancing situation on the side walk.
Well now the kids have woken up and my newly four year old is asking for me to play with him. I got a full day today of distance learning for my daughter and keeping my son busy somehow and getting the work done before a conference call. I hope these meanderings brought something of value to you. I hope you’re staying safe and well through this global pandemic. Next topic is going to be Telehealth as I have a Telehealth appointment coming up with my neurologist. Also, hurray, I am going to venture out of the house next week to resume my infusions for the elezanumab clinical trial! (Check out my blogs on the remyelination trial.) I am so excited to have some assurance that I am going to be able to finish my infusions and the trial. So keep well, and I’ll see you in the next post. God be with you till we meet again.
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