This post is partly courage-training and partly the
continued story of metamorphosis. Getting over that first hurdle—physically and
mentally—to start using a mobility aid can be daunting so I wanted to share my
experience. Many years ago, a lifetime ago even, I was a gymnast. I was the
tallest on my team but I was a powerhouse. Floor and vault were my events.
Let’s pretend uneven bars never happened. I used to soar in the air. We had a
trampoline in our backyard and I would experiment and create new tricks all of the
time. I remember what it feels like to fly.
For years, I was an avid hiker. My husband and I live two hours away from Yosemite National Park, and we would go hiking often, usually difficult, all-day hiking. On the long way up, sometimes you question why the hell you would ever choose such torture, but when you get to the top you feel exhilarated because you literally just-climbed-a-motherhumping-mountain.
Having to use a mobility aid before my geriatric
years wasn’t my plan. Not everyone with POTS/dysautonomia needs a mobility aid,
but some may be dependent on them. With dysautonomia, the body is struggling to maintain homeostasis
and keep blood moving to essential organs, so movement and
exercise can be exhausting and taxing. Gravity is a bitch for the vertically
challenged, and sometimes the only way to be mobile and leave the house is to
use a mobility aid. When the realization sets in that some kind of mobility aid
is needed, it’s a disappointing and scary prospect. The physical struggle can
pale in comparison to the emotional struggle to accept having to rely on a
mobility aid. This is an invisible illness, and when you take that first step
to get aid, it is no longer invisible, and some may question why you would need
it if you “look fine.” Whatever our preconceived notions are about what
disability and illness “looks like,” those notions are wrong.
I suddenly started having trouble walking a year
ago. Since the POTS started, I have struggled to be able to stand still for any
length of time but I could walk. Walking more than 30 feet at this point is extremely exhausting and
precarious. My doctors have told me that the walking issue is not related to
dysautonomia, so I am once again on the long road to diagnosis to figure this
mystery out. Comorbidity and compounded illnesses are typical with
dysautonomia.
I started using a cane in November last year, but I needed one long before that. Almost all dysautonomiacs have been told by some doctor somewhere somehow that it’s “all in your head.” Being told this when you are unable to function as a human being can permanently warp how you mentally navigate your disorder unfortunately. Unraveling the stranglehold this kind of invalidation has on your psyche can be a battle. I'm still trying to unravel it, so I spent months trying to pretend it wasn’t happening and believing that it was all in my head.
When I finally relented and bought the cane, I was
relieved. It has made getting around much
easier and I use it almost all of the
time. I also put off getting a
disability placard and it has also changed my life. On the bad days, the VIP
parking makes all the difference. I’m learning to let go of my pride and let my
desire for a higher quality of life take over. The walking problem has worsened
so I upgraded (downgraded?) to a walker, and I am also using a wheelchair. I
can either leave my house more and use my wheelchair or walker or I can try to
walk longer than 10 minutes and have to spend the next few days bedridden. Those are the breaks. Now I have to figure
out how to decorate them. I bought my cane and wheelchair at a local medical
supply store, but there are some websites with mobility aids, and I really want a cane from fashionablecanes.com.
 |
| Sitting FTW!! |
For the chronically ill. you’ll encounter a variety
of responses in the world when you have your cane, walker, wheelchair, etc.
You’ll get
1. Double-takes:
“Why does she need that if she looks fine?” “Is that cane a fashion statement?”
“Why is she pushing her grandmother’s walker?”
2. Stares:
Your days of blending in are over. At least look fabulous as people stare at
you.
3. Looks
of terror: When people see me, sometimes they jump out of my way, rush to open
the door, tear their children from my path. This comes from a place of kindness and can be pretty amusing.
4. Questions:
People will ask you about it. I don’t mind that much but I have never found a
succinct way of explaining it. I was at a store with a friend recently and a
guy said “You look too young to use that walker.” So I said “Oh, I’m older than
I look. I’m actually 75.” Depending on how snarky I feel that day, my response
varies. People will often ask if I was in an accident. Sometimes I’ll give them
the 10 minute explanation of what is happening. They asked for it!
5. Derision
or Annoyance: This one is rare, but it can happen. If you are a human being in
the world, you’ll encounter douchebags everywhere. Some don’t understand what
it is to have an invisible illness and refuse to try to understand. These
people have worse problems than needing a mobility aid. Try to smile at their
ignorance.
6. Sympathy:
This one makes me the most uncomfortable. I don’t feel sorry for myself so
please don’t feel sorry for me. I don’t mind if you want to hold the door open
for me though.
This experience has given me a profound appreciation
for the struggles of those who have been disabled their whole lives. Being
disabled makes everything more complicated. Before this, I had no idea what the
disabled went through on a daily basis. I had no idea how people treated them.
I had no idea what a constant struggle it is. I had no idea how much people
will focus on your difference.
When I finally accepted that I needed a mobility
aid, my life changed for the better, but I still resist every change along the way.
I constantly tell myself “You can hold on to your pride and suffer and be
home-bound, or you can get out in the world and try to live a more full life. You
are not weak when you use resources. It takes an incredible amount of courage to
take steps to protect your health.” Find the words you need to tell yourself to
let go of whatever is standing in your way (no pun intended).
 |
I may be kind of broken, but I can still do this |
