After not writing in so long, it’s hard to know where to start. I’ve felt like my voice is gone. I have had so much to say, but that drive to put it out there has been hard to revive. Part of it is coming off of opiates and feeling like I don’t recognize who I am, or was; the other part (the part I’d rather avoid) is depression, which is super common with MS. It’s not a sadness, just a lack of wanting to, and it helps me justify everything from my writer’s block to my lack of a social life.
Slowly but surely, I’ve been discovering who I am again – thanks in part to my friends and family who always reach out, even when I don’t ask them to. I can’t tell you how many times Meg and I get into deep conversations about my progression, and we end with her telling me, “you need to be writing about this!”. For the record, she’s right. On top of that, so many people have sent me messages asking why I’m not writing, because they miss reading my posts. Do I really need more confirmation?
I won’t lie; I’m struggling with the way my MS is progressing. Losing my legs is hard to talk about. And maybe the more I talk about it the more real (and scary) it gets. I have shared a bit about my transition into a wheelchair, but I haven’t really put it all out there until now…so I’ve decided to give it a go. It really is complicated – like most things in life, it’s not black and white. I am both super pumped to get freedom, but still struggling with accepting the loss of my stems. I have watched as my legs have lost muscle, and I know it will continue, especially with a mobile chair. The hard part is knowing it’s a transition that only goes one way. But the redeeming factor is that I’ll get back some of the freedom that I haven’t had for awhile now. It may sound silly to the average person, but just being able to make it through the grocery store again would be huge.
I’ve gotten a lot of different responses when I tell people about the impending chair, so I thought I would clear it up: it is a good thing. I can leave the house for more than an hour! Meg and I have started planning a party for this earning my wheels/losing my legs transition to really set the tone. We’ve known this time was coming for years, and honestly I feel lucky that I made it this far! Let’s send these legs off like the ballers we are and throw a party, right?
I wanted to take a few words to say thank you to my amazing wife Meg. She has always had unwavering support for me; emotionally and physically…I am always falling over. As easy as it can be to withdraw and not talk about, diseases like MS overflow into the lives of the people we care about. I think that’s partially why we tend to hold back on admitting how bad things may really be. We see the toll it takes on our friends and family, and we don’t want to add any more; but those people would rather see us enjoying life than withdrawing from society. I need to remember that asking people to come see me is okay.
So, since I haven’t been able to get out as often, I’m just going to put it out there: I want to see you. My scheddy is pretty flexible so if you want to come kick it, the door is open.
One thought on “Earning my wheels — I’m back!”
Sorry you need a chair, but glad you’ll have one available. Being in a chair doesn’t mean you have to weaken. Get physical therapy and develop an exercise routine for your arms, legs and core because you still need to maintain enough strength to transfer and toilet. Stay as independent as you can be.