Somehow I’ve allowed myself to go nearly three months (!) without writing a new blog post. Shame on me. I feel like I’ve started and stopped on this post ten times alone.
I have no particular topic in mind here other than updating you on what I’ve been up to lately. The last couple months have been a whirlwind. Mostly good, but some not so good.
First the good – I finally have a job! I was offered a full-time role at the company I’ve been working at part-time the last six months. I will be working in product management, focusing on creating new data products, which is exciting. If writing is my first love, data analysis is my second.
I am very blessed to have this opportunity, and it will enable me to have more structure in my life. Best of all, I can work remotely in the interim until I get my legs under me (figuratively, of course). Eventually, I’ll make it back to Boston, but now that winter is approaching, it makes sense to wait until spring. I miss Boston so much, but at least now I see the light at the end of the tunnel.
Not that living at home with my parents is a bad thing, but yeah, I’m 31. It’s time.
Another benefit of my job is that I can plan things out now – like my budget. Now that I know what I’ll be making and what my insurance situation is, I can start planning out how to purchase additional adaptive equipment.
Ah yes, adaptive equipment. Now on to the challenges – the not so fun part.
In the last couple months, in the time since my last post, I have felt my muscles get much weaker. My legs continue to get worse, although that is to be expected. It certainly is disappointing, but I’m used to it. I fully expect to be in a wheelchair in the next year or so, so leg weakness, I’ve come to accept. It’s kind of shocking how matter-of-factly I bring this fact up now, but at this point, I’m so weak, a chair would be more liberating than how I’m currently moving around.
What I’m struggling with, though, is my loss of arm strength. I am a restless sleeper, and toss and turn a lot in bed. Lately, I’ve found it harder and harder to turn over in bed, which forces me to sleep on one side most of the night, which causes my neck and hip to be in pain when I wake up. I recently bought a new adjustable bed frame (thanks new job!) which has helped somewhat, but it doesn’t make turning over in bed any easier. I used to do it so effortlessly, but now it takes three, four, sometimes five tries to successfully turn.
As the result of this, during the day my arms feel like lead. Lifting anything is getting difficult – toothbrush, cup, etc. A couple weeks ago at a fundraiser I was shaking hands and I struggled to get my arm high enough in the air. I had to use my other arm to prop up my elbow.
In times like these, I realize that I haven’t really thought as much about losing my arm strength. I have been so fixated on losing the ability to walk that I often forget that my arms are going to get worse too. What’s going to happen when I can’t lift my arms at all? How will I perform daily tasks, type on a phone, write, eat, brush my teeth, wash my face, hold onto my future child, or anything for that matter?
I know the answer. It’s unsettling to say the least. But let’s not think that far ahead just yet though.
Again, as I’ve said numerous times, I have to take this disease one day at a time and hold out hope that in the future, some device or drug will come about that will prevent that day from happening. Or at the very least, that I’ll have a plan and infrastructure in place (caregivers, equipment, etc.) that will help me. Maybe even a robot assistant.
So yeah, the bad comes with the good, the good with the bad. Never rise too high or sink too low.
On a happier note, I am feeling a breakthrough out of my writing rut. I’ve had a few post ideas pop into my mind recently, things I’ve been thinking about and fretting over, the byproduct I suppose of dwelling on my condition constantly. I’ve also found myself very nostalgic of my undergrad days. It’s hard to believe that next May will be the ten-year anniversary since I graduated from Northeastern. I am getting old.
But hey, I’m thankful for every day. And considering I spent my 20s expecting to be in a wheelchair by 30, to be 31 and still on my feet is a blessing. I’ll take it.