Living

Stubbornness. I never knew this personality trait would come in handy later in life, but chronic illness requires a certain amount of stubbornness to persist. Stubbornness to thrive and persevere—to never relinquish the dream for a better life. You can’t fight for the life you used to have because that doesn’t exist anymore. You have to fight for a new life because chronic illness will try to defeat you. It will crush the things you love most in the world and stomp on them with a maniacal laugh. 

So I want to re-learn what it is to live. I’ve spent the last four years spending most of the time feeling terrible, going to appointments, doing tests, struggling through working, being couch-bound, feeling frustrated and afraid, and lacking fun and enjoyment. Because of this, I have missed almost everything I was invited to this year. I spoke before about how often it feels like life is passing you by when you are ill, and somehow you are just sitting in the eye of the storm. I miss the flavor of participation.

I used to love traveling, hiking, dancing, shopping, doing things, moving. But I’ve had to learn that my perception of “living” and doing the things I love has had to change since getting ill. I have to re-learn how to live within my limitations instead of just trying to fight those limitations. There’s a steep learning curve for this. People talk about physical limitations as just “mind over matter” and how we should never accept limitations, but these people have never had their body scream WHY-WOULD-YOU-EVER-DO-THIS-TO-ME every time you stand up or walk. These are the same people who tell me they would never use a mobility aid. Sometimes you don’t get to make the rules. But you can find a way to work within those rules.

So I finally had some time off for the first time in two years this summer, and I wanted to make the most of it, to try to regain the muscle memory of leaving the house and doing things. My husband, some friends, and I went on a short vacation in Tahoe recently. We rented a cabin and stayed for about a week. I was terrified of what the altitude would do to me or if I would even be able to do the drive, but I sucked it up and went to the cabin. The altitude was not my friend. I had to buy a shower chair because I wasn’t going to make it through showering without a head injury, so I finally rounded out my collection of old lady accessories. I took my wheelchair, walker, and cane, and planned to go do some things while we were there. I was mostly only able to sit and read, which is a pretty ideal vacation to me.

My sweet view while reading

My worst fear happened while we were there also: I had to go to the ER on our last day there. That’s a story for another time. I’m still trying to recover from this trip weeks later, but I don’t regret going. We had a good time despite how terrible I felt. However, I will leave Tahoe to the orthostatic tolerant and stick to sea level from here on.

Some other attempts at living fell through this summer, but it wasn’t all a loss. I didn’t get to see one of my favorite musicians in concert as planned. My friend and I played a show and I was brutally ill that day, so I didn’t get to play much. Illness is a cruel bitch. I make plans and build dreams and then she dashes them at every turn. Alas, I made good attempts at these things, and I’m satisfied with at least making attempts. Really, I spent most of my summer sitting in my yard and thinking about life. I had some time to finally wrap my brain around the changes in my life and learn how to appreciate these changes instead of just wasting all of my energy resisting them.

So this re-learning to “live” thing is a process and I’m stubbornly still trying to find a way.  Sitting on the couch and just pushing through life is not living. It may be living with your illness but it is definitely not living a life. It's too easy to give in or fall into the trap of not moving when your body refuses to comply with being a human being or when life hands you a really crappy hand of cards. But our only option in life is to keep going. I hope that others with chronic illness or other obstacles also have the same reserve of stubbornness to tap into to keep fighting and trying. I am interested to hear how others who face obstacles to living a full life try to navigate the desire to live. I know the struggle is universal.

I’m thankful I had some time off, I’m thankful for what I can still do, and I’m thankful for the great life I’ve been given. Dysautonomia can suck it. I’ve got a life to live. 

I gathered enough energy to get to see the lake one day while we were there. I'm glad I did

Beauty

Sorry it’s been so long since I’ve posted. I’ve been trying to enjoy the last dregs of summer before I go back to work. I’ve been doing quite a bit of testing/torture lately with the medical establishment, and I took a trip out of town with my husband. I’ve been desperately trying to recover from the trip, testing, and an ER visit, but instead of delving into that silly business, I have something else on my mind.

I have been seeing quite a few stories over the past few weeks that suggest our perceptions of disability, beauty, and normalcy could be changing in positive ways. As an academic, identity and issues of representation are what interests me the most. I’ve been interested in how gender and beauty are portrayed in media, and now that I am disabled I have noticed the limited representations of disability and illness in our culture. 

Consider where you have seen disability or chronic illness represented in movies, commercials, music, television, etc. Consider how many protagonists in narratives are disabled or chronically ill. Consider icons of beauty in our culture and how many of them are disabled. Consider what happens when disability is represented and how often it is used for humor instead of poignancy. I never realized how limited these representations are. 

Illness and disability are not pretty issues. There isn’t much that’s fun about them. There is unspoken shame and embarrassment when you are dealing with limitations many around you do not have to cope with every day. But my studies in gender and multiculturalism have taught me that when you don’t see yourself represented, it can create a veil between self and society. It can perpetuate silence and invisibility. You long for your story to be told. It is a daunting adventure to break the spell of shame or silence, but it is beautiful for those who can manage it.

Here are some stories of women who show that illness and disability come in all shapes and ages and can be beautiful.

Bethany Townsend  

Sierra Sandison

Jillian Mercado

All three of these women are beautiful, which gives their story some glamour, but they are bravely changing how we perceive ability and beauty. Their stories became national headlines, and this could be a positive step forward in terms of representation. I think they are also challenging how we perceive health and age. It's a relief to see stories and faces who can challenge these perceptions about health, age, and beauty.

Here's another great story. This is one of my favorite TED Talks. Maysoon Zayid is a comedian who happens to also have cerebral palsy. She tackles this issue of representation with hilarity. Barriers are being broken down and I think we need more stories like this to break the silence of disability and illness. Who knew the stories could be so beautiful? 

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What Helps: Mobility Aids

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

Sitting FTW!!

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.

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

I may use a walker, but I’m still strong and athletic. Whatever abilities you had in the past do not matter anymore, but today does. Don’t let others' perceptions determine how you manage your health and the choices you make. You can take charge of your health and make a new life in the body you have now.   

Ups and Downs

The Downs 

Bedridden days, needing to go to the ER to beg for an IV, having to call a sub to cover my finals, not getting to say goodbye to my students, unable to drive, missing more work and events, unable to leave the house, comically starting a small fire in my kitchen because I’m too ill to cook. The many adventures of being kind of broken. The plot twist had a predictable ending. I expected to end my first year teaching full time in celebration. With a bang, not a whimper. I should be plowing through my last bit of grading so I can get the party (summer vacation) started, ready to fully participate in the first time I have ever had summer off since I’ve started teaching. I was supposed to be strong and ready. Things have gone downhill again. Something has shifted. A slight turn. The jump to the next lily pad. The last six months may have been the worst since this thing started. I long for some normalcy. Some simplicity. To do the things I took for granted not so long ago. 

The Ups

It may have been unspeakably brutal, but I did make it to the end of the semester. I had a student nominate me to be honored at an event and I had students tell me honestly how much they enjoyed working with me. I saw improvement in their work and I helped to get them there. I feel triumphant. I was a sick, lump of a person often, but I still managed to make a difference. I know that most people would have left a long time ago but I pushed through.

I got a walker—despite putting off that moment for many months. But I feel triumphant to finally have the courage to let go of my pride and do what I have to do to get around. It has a seat! I’m going to get a cup holder for it too.

Mel and I rocking some slow jams

I played music. I sang some of my own music in front of people two weeks ago, playing a short set. I have been waiting for that moment for two years. Singing and performing has become extremely difficult because it is so taxing on my system. It’s really difficult to sing when breathing is such a struggle, especially the way I like to sing, with every pore in my body. I was bedridden the day before we played. But I did it. I feel triumphant. I hope to do it again soon because I have new songs I’ve written that I’ve never played. I want to reclaim my life as a performing songwriter. 

2014 thus far has been little else but ups and downs. Triumphs tempered by setbacks. But this is the reality of chronic illness and a rare illness at that.

I don’t consider myself unlucky or trap myself into thinking about fairness. I try not to think in such relative terms. I feel blessed that I now have two months to try to regain my strength, reclaim some of my lost identity and passions, talk to my doctors, spend time with my wonderful patient husband, and figure out the way forward. Ready for some good days, some joy, and some air conditioning.