When My Illness Causes a Scene

The scene was familiar. I had just finished eating a lovely steak dinner with my family when I began to feel the heaviness in my abdomen. The dimly-lit restaurant was fairly busy on this particular Friday night, and there was a constant buzz in the air with waiters zipping past and couples carrying on their own conversations at the adjacent tables. My family must have seen it coming on because I noticed them hurriedly flagging down the waiter for the check. My husband and parents have become experts at catching these symptoms in their earliest phases, as if always on alert for the warning signs.

If you are looking closely, you will notice that it often begins with a glassy look to my eyes, sometimes a tear or two will fall from my right eye. My smile begins to look a little crooked, and I have a harder time answering questions. My responses become short, and I resort to nods and shakes of my head. I try smiling to let everyone know that I am okay, despite all evidence to the contrary. Often within a matter of minutes, my speech becomes child-like. The right side of my face droops, and my hands curl up into half fists. Sometimes there is an impulse to hit my face with these cupped hands. I have been known to say that it feels like there are bugs crawling all over my skin and the need to brush them off is uncontrollable. Other times, the hitting is not directed at myself but at an object in front of me - a wall, a paper towel holder, or my wheelchair. If I am holding a book or magazine, I will violently begin flipping the pages, accidentally tearing them as I go. A phone or tablet is subjected to rapid scrolling and tapping without an actual glance at the screen below. Sometimes my husband will take my jerking hands into his own and hold them; all the while, I fight against him.

This is how my migraines with aura in the brainstem typically present themselves. They are not the quiet, icepick through the skull migraines, though that pain occasionally comes later. These bad boys come on with a bang. I like to think that they want everyone to know they have arrived. 

This particular evening, we did not have my wheelchair in the car. The restaurant itself, with gravel leading up to the door, was not handicap-accessible, so it likely would not have mattered. We had to somehow move my quickly-fading self from our table to the front door and then to the car. We’ve adopted a phrase in my family for times like this: strong arms. When my family says that it is time for strong arms, they mean that it is time to move me from one location to another and during this process they may literally need all their strength. With my dad’s arms interlocking my left arm and my husband doing the same on the right, we made our way to the lobby. I was just barely aware of my surroundings at this point. As is often the case during these episodes, my vision blurred and I faded in and out of consciousness. For years, it was difficult to distinguish these migraines episodes from the presyncopal and syncopal events I experience as a result of dysautonomia. Both manifest themselves similarly and both result in a hangover-like effect for hours, sometimes days, afterward. My neurologist tells me that this type of migraine is directly related to the malfunctioning of my autonomic nervous system, so whether I call it dysautonomia or a migraine is sort of irrelevant. It reminds me a bit of the chicken and the egg debate. 

There is always the hope that I can make it to the final destination, in this case the car, without collapsing. But on this occasion, I made it as far as the lobby before my legs gave way, despite my companions’ best efforts to keep me upright. I always wonder what these episodes must look like to outsiders. What do the other patrons who are waiting at the hostess stand think of this display? I must appear to have not only physical limitations, but mental limitations as well, since I am often drooling and my verbal communication is impaired. It probably isn’t every day that you see someone collapse to the floor at a restaurant or the grocery store, and it yet it feels kind of normal for me. On a separate but similarly terrible occasion, we dined at a local pizza place and my husband later told me that one of the waitresses asked if I was drunk. I remember this comment really bothering me at the time. Over the years, I’ve come to feel less and less embarrassed by these episodes and to see them instead for what they are – manifestations of an illness that is completely out of my control. Don’t get me wrong, it still feels uncomfortable to be so exposed and vulnerable in these moments, but it’s getting easier. Occasionally, I am so far gone that I am completely unaware of onlookers altogether. And as silly as it sounds, while those episodes are probably the hardest on my body, they are the easiest on me emotionally. 

After sitting for a few minutes on a bench in the lobby, we attempted to make our way to the car. Unfortunately, I collapsed again on the gravel. I vaguely recall my worried parents standing over me as I fought to regain normalcy. My breathing felt labored and I began to hyperventilate. Hyperventilating during these episodes is not uncommon for me. It is as though there is such a build-up of pain and frustration with my body that I just can’t seem to come to grips with the total lack of control I have in that moment, and I panic. 

I don’t remember what happened next, but if history is any indication, my family likely struggled getting me into my house and into bed. My husband probably helped me out of my clothes and shoes, put my pajamas on me, and gave me something to help me sleep. By this point, my head would be throbbing, but I would also be so worn out that, despite the pain, I could likely drift off.

I wish I could say that this night was a one-off, but I can’t count the number of episodes I have had that are just like this. Gratefully, this past year has been better and the migraines, while not gone completely, have been fewer and further between. I credit this to medication changes and to simply learning to listen to my body when it is telling me to rest. 

My mom has told me stories of strangers coming to her aid when I have had such moments in the grocery store. And I can recall a few times where restaurant staff would go out of their way to help me and my family when they saw us struggling. Most individuals though just sort of stare. I don’t think it’s that they are nosy, I think they just don’t how to be of assistance in that situation. And I get that. Because of my experience with this, I’d like to think that nowadays if I were to witness a similar situation, I would reach out to the frazzled family member and just ask if there was anything I could do to help.

Why Birthdays are Difficult with Chronic Illness

My 35^th birthday is next month and I usually love celebrating my birthday, but I am having a really hard time this year. It’s not that I don’t have anything worth celebrating - I am extremely grateful for my  husband who is truly my best friend, my wonderful and encouraging family, those few loyal friendships that are steadfast no matter what the years throw at us, my pets whom I find endlessly entertaining, the list goes on. Although I am not where I thought I’d be at 35, most days I am able to find peace with my circumstances. However, finding ways to celebrate when you’re ill is tough. There are so many things I want to do, some that seem reasonable for an average person – ice skating, going to a movie, riding the carousel and using the paddle boats at the park, taking a cooking class, bowling with friends – and others are over-the-top – driving to another state for a weekend getaway, flying overseas, going on a hot air balloon ride. The thing is, whether I were to choose something reasonable or extravagant, it wouldn’t matter. My body won’t allow me to do either one. 

Anyone who knows me knows that I love food, so every year I try to pick out someplace special to have my birthday dinner. Sometimes the restaurant is on the fancy side, but often it is just a place that is known to have good grub. But even going out to eat when you are ill can be an ordeal. This year I have been considering Hayes Barton Café in Raleigh because I have never been there and I am in the mood for some yummy comfort food (hello, meatloaf!) and a big slice of cake. In order to go to a restaurant, particularly one I have never been to before, I have to consider whether there is close parking and decide if I should plan to use my wheelchair the whole time or leave it in the car and only bring it out if needed? Can the restaurant even accommodate a wheelchair? Yes, most restaurants say they are ADA accessible but were you to actually try maneuvering a wheelchair in there during busy hours you would find out otherwise. Do I need a reservation? If they don’t take reservations (which is the case with Hayes Barton), are they going to be so crowded that I will have to stand in line to wait (cue the wheelchair)? Is the restaurant going to be too noisy or the lights inside too bright? If either one occurs, I could end up with a migraine attack that will leave me unable to communicate or walk.  I plan to bring my sunglasses just in case. Should I plan to eat dessert there? I would really like to because that is part of the birthday experience, but am I asking for too much by hoping that I won’t have a migraine or post-prandial episode? I’d like to walk around the streets a little after dinner to look at the shops and restaurants and houses in that neighborhood, but even a five or ten minute walk could be too much, and I may not know whether that’s the case until it’s too late. 

Oh, did I mention I also plan to have a birthday lunch with my family, so I need to make these considerations times two! 

Some of you may be wondering why I would choose to go out to eat if it is so much work and why I wouldn’t just pick something else to do for my big day. Well, to be frank, there aren’t many options that are less complicated or less work for me (sans sitting on my butt at home) than going out to eat. I could ask my parents if they would mind hosting a dinner at their home, but we have family dinner there most Wednesdays and that is sometimes the only time I leave my house for the entire week, so I would like to do something special for my birthday. I have racked my brain trying to think of another activity that I can do on my birthday that would be feasible with my limitations – maybe bowling, but the lights and noise in a bowling alley are surprisingly in-your-face. Movie theaters are much worse in that regard. How about miniature golf? Well, in the fall or winter, I might actually be able to handle this activity but I unfortunately can’t stand, sit, or walk outside in the summer for that long, which means that going to a park (which I also was really considering) is out of the running as well. I attended a block-printing workshop at a local indie store a couple of years ago and while it wore me out, that was actually something that was feasible for someone with my limitations. Unfortunately, I wasn’t able to find any affordable one-day workshops or classes that fit the bill this summer. Most classes, such as sewing, pottery or cooking, aren’t really the best choices for me because of the amount of time I would need to be sitting or standing. Most days I can only sit for a couple of hours at a time before needing to lie down. I can only stand in one spot for 10 minutes before I should sit. That is the reality, and it sucks. I push myself on this at times, particularly when I am with other people, because I don’t want to appear weak and I don’t want to draw attention myself. But I do pay the price for those times when I don’t allow my body to rest. You may notice me shift my weight from foot to foot, or lean up against something. I am trying to get better at letting my friends know when I need to sit or lie down, but if you happen to notice me leaning on furniture or my eyes becoming glassy, please encourage me to rest. 

Even if I decide to take a chance on an activity (I have seriously been considering saying screw it to my body and attempting to see a movie or go bowling anyway), actually making the plans can be problematic. Some of you may be nodding your heads in agreement, given how much I have cancelled on you over the years. Adjusting to the unpredictability of these illnesses continues to be one of the hardest things. Yes, every day brings some pain and fatigue, but is tomorrow going to be a day that I’m stuck in bed – I won’t know until the time comes. I can be fine one morning, and be completely unable to walk to the bathroom on my own by evening. Occasionally, I can point to a trigger or a cause for the increase in symptoms, but most of the time it just happens with no rhyme or reason. This makes it challenging to make and keep plans. I would like to send out an invitation to all of my friends letting them know that I will be at such and such bowling alley from 2-4 PM on this date, drop in if you can. But the truth is, there is a really great a chance I may not be able to attend my own party. So I keep my circle tight, mostly just family, so that if I have to cancel or if I have an “episode” both of which I often do, they will understand. Unfortunately, this can make my world feel terribly small at times. 

This post wasn’t meant to be a pity party. I am writing it with the hopes that someone will read it and gain a better understanding of the challenges that individuals with chronic illnesses face, particularly on special occasions. As far as my birthday goes, I’m not too worried. I have plenty of time to find little ways of making it special, and James and my family always go above and beyond to make sure I know I am loved. I read this blog post last night when I was looking for someone who could relate to my birthday blues, and I really appreciated the way this woman found pleasure in the smallest of details: https://medium.com/@srachel_m/celebrating-while-sick-fc2cf09b7716

If you stuck around to read all of this, you’re awesome.

What I Wish I'd Known about Grief and Chronic Illness

My niece will be born today. She is the first of her generation in our relatively small family. And we are all thrilled beyond words. As soon as we get the news that she has arrived, my husband and I will meet the rest of our family at the hospital, and we look forward to showering my brother and my sister-in-law and their new precious bundle with lots of love and affection. 

As happy as I am on this occasion, I am reminded of something my therapist said to me around this time last year when I was going through a rough period. She said that it is possible to feel two seemingly conflicting emotions at the same time; gratitude and sadness are not mutually exclusive. Perhaps this isn’t the most profound wisdom ever spoken, but it was what I needed to hear then and it is what I cling to now. 

Let’s rewind a bit to yesterday evening. I went to our local grocery store with my mom to pick up the ingredients for my husband’s chocolate peanut butter ooey gooey butter cake (his request for his birthday dessert this year). If I am not ordering my groceries online through Walmart’s free pickup service, which might be the best thing to enter my life so far in 2016, then my mom is the one taking me for short bouts to our local grocer. Even though I have been doing a little better with walking lately and staying upright through most excursions, something told me yesterday that I needed to use the electronic scooter for this trip, as it has been necessary so many times in the past. It turned out to be a good choice, as less than halfway through our trip I got that familiar glassy-eyed look and found myself struggling to keep it together. My face began to droop a little on the right side; my speech slowed and slurred; and my behavior became childish and erratic. I felt myself going in and out of awareness, fighting hard to reserve a semblance of togetherness as we navigated the last few aisles and the checkout line. My vague recollection of the checkout line includes me in my sunglasses, the cashier and another gentleman being somewhat afraid I’d run them over with my scooter, and everyone around me talking in those hushed, comforting tones that one uses to calm a small child.

This was far from my worst presyncopal migraine episode. And yet when the hangover effect of this particular encounter wore off, as it only recently has, I was left with the sobering reminder that I am not better. In fact, I am still really far from where I want to be. During the good hours (I call them that, as I feel that with chronic illness it’s pretty darn rare to have a completely good day), it’s easy to forget that I am this sick. I can’t explain this phenomena. You would think that someone who has looked illness in the eye for over 20 years would really start to wear that identity like a badge. But the truth is that I do my best to rip off that badge whenever I am able. I used to think I did this because I am an optimistic person, but I now think it has more to do with survival than optimism. I can’t get out of bed if I allow myself to think that every day is going to be as painful as the last. So I let myself forget at times or, more accurately, I push it to the back of my mind and put different, happier thoughts at the forefront. 

For as long as I can remember, I’ve wanted to be a mother. As a child I didn’t spend too much time dreaming of a fairytale wedding or my own prince charming husband. Although I had wildly varying ambitions when it came to career options (why couldn’t I be a veterinarian, an acclaimed author and open my own restaurant all at the same time?), what I thought about most was how I looked forward to one day spending Christmas Eve wrapping up gifts from Santa for my children who would eagerly devour them next morning. And how I’d teach my little girl to whip up a perfect chocolate cake and to not settle for less than she deserved in love, in friendship, and in the workplace. I’d encourage my son when he tried to ride a bike for the first time and cheer him on during his first soccer game, or music recital or simply when he beat another level in Super Mario Brothers. It never occurred to me that being a mother wasn’t guaranteed. Occasionally as a young girl at Sunday school, I’d be encouraged to pray to God about the plans and hopes I had for the future. I’d pray for my future husband, and that my parents would remain in good health, and that I’d always stay best friends with Nancy. And I’d pray that I could help all the animals He had ever created, but I don’t recall ever praying about motherhood. It always seemed like a given, so much so that even now I have a difficult time imagining my future without that being at the center.

They say that when you are diagnosed with a chronic illness, it is not uncommon to go through a grieving process in which you mourn the loss of your old self. I think there is truth to this, but my experience has been that this process never really ends. Maybe some people reach a level of lasting acceptance where they are finally at peace with their life as it is now, but I don’t think that’s the case for most of us. Over the years, there have been plenty of times where I have let go of the anger and the bargaining and reached a place where I am, if not joyful, at least content in my present circumstance. But then a friend will get a job promotion and I’ll be reminded of how long it has been since I’ve been disabled and unable to work. Or I’ll see photos of place I’d love to visit in Europe but can’t because of the numerous hills and cobblestone streets that, while lovely, would be a nightmare for anyone in a wheelchair. Or I’ll dream of taking a cross country  road trip and be reminded that I often get car sick and that asking my husband to do all of the driving from North Carolina to California because I can’t anymore wouldn’t really be fair. It’s not always an outside source that starts the cycle of grief over; most of the time it is trips like this to the grocery store or the aftermath of taking a simple shower, little ways my body reminds me of my own frailty.

The last few years have quite often found me stuck in the anger stage of grief. I attribute most of that to my stupid little biological clock that seems to be forever nagging me to have children now that I’m well into my thirties. The truth is that I’m heartbroken that I won’t be a mother and that I’ve unintentionally denied my amazing husband the opportunity to be a dad. If I think about it too much, my chest begins to tighten and I start to feel like I can’t breathe. Well-meaning friends and family remind me that women are having healthy children well into their forties now and that I should not give up hope. And, while I appreciate the sentiment, I can’t help but think that if these individuals spent any significant amount of time with me, they would realize that I am unable to care for myself, let alone another human being. As much as I’d like it to be otherwise, unfortunately, my track record for improvement isn’t a very good one. I am not looking for anyone to fix my situation or to offer words of hope or wisdom. At the end of the day, I think I just need my friends and family to acknowledge that this is really hard. 

I never imagined that 22 years after first exhibiting symptoms of chronic illness, I would feel like I was stuck in the same spot. Still grieving. Still learning. I’d like to tell those who are struggling, like myself, that it’s okay if you never get to a place of complete acceptance. And it’s okay if you thought you were at peace only to find yourself sad and upset again because of all the ways your body continues to fail you. You can take all the time you need to grieve for the dreams you’ve had to alter or give up. Finding a place of contentment is not a race with a finish line that you have to reach within a certain time frame. And being sad about your limitations does not mean that you are ungrateful for all of the good things in your life. Nor does it make you less of a fighter. 

I will go to the hospital today, and I will hold my niece and give her all the love I have to give. I will tell her about all the plans and dreams I have for us. I’ll tell her how when she is a little older I will teach her how to care for kittens, and how I look forward to someday walking through the backyard together where I’ll point out the metal owl that her grandmother gave me, which is now nailed to my favorite tree. And I will be so happy, and I’ll be a little sad, too. And that’s okay.