Reading through a few posts in my feed, as well as listening to some of the feedback from friends, I decided it is time to shed a bit more light on this part of my life. So here we go.
I had to allow myself to accept the help of a wheelchair more regularly about a couple years back. It was a hard thing to adjust too. I didn’t want to admit I needed it and I didn’t want to be judged so harshly when those around me saw me sometimes in and sometimes not. I have spent years fighting against my own body and limitations to avoid having to face this reality, sometimes with severe consequences. I kept being emboldened by the fact my sheer stubbornness of will seemed to keep allowing me to gain back whatever was lost from fighting too hard, so I decided to keep fighting no matter the cost for quite some time. Many considered me quite foolish for this, and in a way I understand their point and agree to an extent. On the other hand, my unwillingness to sit down and give in allowed me to defy all odds and predictions and make it well past the age all thought would be when my mobility would end. Even now, though I am in it on weak days and for any outing that involves walking further than a few feet, I am not fully dependent on my chair as was predicted. I have lived the life of being 80% dependent on my chair for mobility and stability for about 2 years now, but I still struggle at times with accepting it and facing the judgement from others (and sometimes even myself).
I also have a cane, arm crutches, numerous braces (legs, wrists, fingers, shoulder, back, ankles, knee), and a walker. I really hate the walker. lol For some reason I just feel silly when forced to use it. Kind of ironic when one considers all the rest in my necessary set of aids. I have severely progressed aEDS (arthrochalasia type) so it has been a long downward spiral so to speak that led me to the chair (I was forced to get an accessible parking placard by the age of 16 because my knees were so shot).
So, given my stubborn refusal to accept my coming fate and my constant denial of needing to listen to and respect my body’s limitations… what made me finally start cooperating? Well it started with ending up partially paralyzed and lying in an er for hours as they tried to figure out what to do; especially since what led to that was a sudden collapse caused simply from walking back down a trail while on vacation at a nearby National Reserve. Thankfully it was only a pinched nerve (vs severed) caused by several dislocations in my lower back so they were able to get me mobile again. Unfortunately, I didn’t “sit down” immediately as my doctor desperately wished I would. I still had to fight against my tendency to be stubborn to a fault and fall victim to my own reckless neglect of my body’s limitations a few more times. A few more rounds of randomly ending up with a paralyzed leg or two that looked for a while to be dangerously close to permanent and my doctor had a strong argument to use against me to get me to finally listen.
As an EDSer, there is a reality of life that we are forced to face whether we want to or not… the reality that once something gives once, it is bound to continue doing so at frustratingly random intervals from then on out. Translation: I can’t count on my legs anymore to work and keep me upright, hence my giving in to the chair. It is better to be sitting, even with all the accessibility issues in my town, than to attempt to be standing and have more falls that leave me in a serious state like that ER trip. It didn’t hurt that my doctor added with urgency the fact that one of these days, my falling will actually sever something and the damage will be permanent.
Honestly, it took me a while to adjust to, and accept, the use of my chair more often. Once I got over the initial hit to my pride and fear though, I found that focusing on the freedom it gave back to me to be more mobile again helped me accept it better. By fighting against myself so hard, I was also limiting myself in ways I desperately didn’t want to because no amount of stubbornness can truly erase reality. By finally sitting down, I opened back up doors in life that had been closed long ago. I honestly believe this has allowed me to be a better and more active mother, and I know it has helped me and the boys have more access to our community (accessibility issues aside…) and special field trips and outings.
I still have my days where I try to fight back against my body more than I should, and the reasons for doing so honestly vary from case to case, but I am slowly getting better about accepting my body for what it is. Accepting myself as a whole is still a struggle as my battle for self-esteem, confidence, and self-worth run deep but that is a story for another time.