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Coping with Ataxia
By Tammy Schuman
iUniverse, Inc.Copyright © 2013 Tammy Schuman
All rights reserved.
Locked Out: Hide a key somewhere
One day, when I was diagnosed, but certain I didn't yet need any assistive devices, I was emptying the garbage, when I heard the garage–to–house door lock behind me.
"No problem," I thought. I would just use the hidden spare key. Then I remembered the old hide–a–key case had been damaged and I hadn't gotten around to replacing it.
"No problem," I thought. I would just call one of my neighbors to help. My cell phone was in the house. I could hear Lucy the dog, barking—probably wondering why I hadn't yet come back in the house. I had never trained her to open doors, so that wasn't an option. After trying every door and window, I had to face up to having really locked myself out of the house.
My next door neighbors' house was under construction and I could hear workers. I'd just stroll down there and borrow a phone from one of them. But, my strolling days were over and I knew I would need at least my trekking poles. Where were they? In the freakin' house with my keys, the land line phone, my cell phone, the neighbors' numbers and Lucy.
I staggered downhill (at that point, doable, but not pretty) and borrowed a cell phone from a friendly worker. I remembered the number for my friend and closest neighbor, but she worked for the city and wasn't home. Next, I called the only other number I could remember--another friend's mobile phone. She answered promptly from a tennis tournament 150 miles away in central Oregon.
So why didn't I call my spouse? Two reasons: I wanted to exhaust the easy and/or close solutions to my dilemma first before calling someone who worked 15 miles away. Second, I wasn't ready to fess up to being unable to figure out a solution. So then why didn't I just go to one of several neighbors? Any one would have been happy to help–I just couldn't get to them. Our neighborhood isn't set up well for someone with limited mobility. That was an early clue that limited mobility was an issue. "Houston–we have a problem," I admitted.
Fortunately, my next call to my daughter and son–in–law, was more successful. He was at home, although she had taken her daughter, Cindy, to swim lessons and wasn't at home. My son-in-law called my daughter and she rescued me an hour later. Cindy had to come in her wet swimsuit. Our son and his family lived in Seattle at the time and were spared the entire incident.
The lesson: Too many to count ...
But Officer, I am not drunk: What ataxia looks like from the outside
There was a time before Skeeter, before a rollator/walker or even trekking poles ...
In retrospect, I think I was trying to convince myself that I wasn't noticeably disabled. Although I am somewhat of a denial advocate, this attitude often got me in more trouble than it benefited me. I actually thought if I acted normally, no one would think something was amiss. They did. People who knew me well, knew right away something was up, but casual acquaintances and strangers just thought I was impaired for some reason. Pick your impairment of choice––drugs (nope), MS/stroke (nope), dementia (not yet), alcohol (probably). But, that just wouldn't do. Pretending that my struggles were only internal and not obvious, wasn't compatible with preserving my self–image.
In the middle of a summer day, I decided to drive down to a local bike shop to buy my spouse a birthday gift. I did and drove home. My dog, Lucy, felt her job was to frighten any potential intruder at the front door with her fearsome bark. Never successfully able to train her that not everyone was a threat, I had to close her off in the family room to answer the door (setting the stage, here ...).
About twenty minutes after getting home, three police officers (must have been a slow day at the department) were at my door because the bike shop had reported me for suspected drunk driving. They were concerned about my ataxic gait and slurred speech. It was time to face up to what ataxia (even early stages) looked like to others.
I was both embarrassed and mad, but part of me was grudgingly admiring of the people at the bike shop. They didn't know me, could only observe my symptoms and be concerned for public safety. Not everyone has the courage to turn in someone they believe might be intoxicated. But, my wicked witch side won out, so I was mostly indignant and mad.
Stern faced Police: "Are you Mrs. Schuman and were you just at the Lake Oswego bike shop? Can we talk to you?"
I thought to myself, "Stay calm Tam, take a deep breath, do not cry and definitely do not let them see you sweat. You know what this is about and you didn't do anything wrong." Still, when three uniformed police come to your house, you feel like a criminal.
Rattled Tammy: "Yes I am, yes I was and yes you can." Lucy was going berserk barking and nothing I could do would convince her that I was not going to be shot by intruders.
Cautious Police: "Could you put the dog away?" I put her in the family room, closed the pocket door and returned. "Have you been drinking today?" It was around noon and although I look forward to wine, we're talking evening!
Courteous Tammy: "I know what this is about and although I may have appeared drunk at the bike shop, I haven't had anything to drink. I have a type of spinocerebellar ataxia." I assumed that my explanation would suffice and was shocked when they didn't accept it at face value and leave.
Persistent Police: "We need to administer some field sobriety tests."
Now, I watch TV enough to know the tests are probably walking a straight line (cannot do that), walking heel and toe (definitely cannot do that), stretching arms out to side and bringing index finger to nose (cannot dependably do that) and standing on one leg (are you kidding me?). Falling over would be a dead giveaway of test failure. A brilliant thought occurred to me after I informed them I would fail any sobriety tests.
Helpful Tammy: "You could call my neurologist or the Movement Disorders Clinic or I could take a breathalyzer test." Yes, I did know they couldn't legally require me to, but I also knew a breathalyzer test would be negative and I was starting to sweat.
Uncooperative Police: "We cannot do that. Could you put your hands out to your side and alternately touch your nose?"
Angry Tammy: "Fine! Don't say I didn't warn you."
Since this is a common neurological assessment exam, I was reasonably familiar with it. I obviously did a passable job, because the police seemed satisfied and left, their standards being much lower than my neurologist's. I had managed to stab myself in the eye only once. But I didn't confess to some random crime I had not committed and I did not cry.
At a hastily made appointment later that week, my neurologist gave me a letter verifying that I indeed do have a Spinocerebellar Ataxia. I made several copies of the letter–one for each car, one for me, my spouse, the children and the Lake Oswego police.
* * *
My daughter–in–law helped me design a card with my picture and contact information on one side, a brief explanation of SCA (and spelling) on the other. I keep them on me, on Skeeter and hand them out to everyone, whether they want one or not; if they trash it, fine. In the event I am found unconscious on the side of the road, people know who I am, what I look like, what I do and do not have and while I may appear impaired, I am not (at least, not necessarily). That little card saves me the need to explain SCA for the thousandth time. I found informing people spares them from asking. Although Skeeter and my assorted assistive devices help a lot now simply by being indicative of a person with disabilities or impairments, retailers are relieved to have an explanation. Only a few curious people will cautiously ask, but everyone wonders in silence.
The lesson: Give it up–it shows. People notice.
Caring but clueless in Portland
"You just don't understand what it's like ...". I hear that a lot from people with ataxia on websites and blogs. Maybe, but my experience with family and friends is that it certainly isn't from lack of trying. Most importantly, it's not from lack of caring.
People struggle more with the if, when, and how much help to offer. Often, the strategy is not to do anything that might be perceived as a threat to one's effort at self-sufficiency. People with disabilities can be set in their ways or have their preferred routine. No one wants to unwittingly disrupt that, but we (disabled persons) can also be a pain to deal with. I'd like to say I make it easy by not being easily offended or set off by offers of assistance. My spouse has never said, "Tam, what do you want?"—out loud, that is. The thing is, I don't always know. I do ask for help more often now and have found people happy to be useful. Opening a door is a simple task for someone to do, but a big favor to me. I've learned a "thank you" will do; people don't need a Nobel. Duh.
Having spinocerebellar ataxia (SCA) and being out among unaffected people, caused me to think about the "you don't understand" comment a lot. I used to think I was pretty sensitive to others. Having ataxia has taught me that while I don't have a clue about anything outside of my own view of the world, I don't need to feel badly about it. I do recognize there are many life experiences that aren't in a frame of reference I "get". But, in the past, I confused caring with understanding. Fortunately, I never looked searchingly into someone's eyes and uttered the words, "I understand", but now I understand that I didn't understand. I think back to my spouse's and my aging parents, friends with cancer, people in pain, a parent of an autistic child. I was more interested in patting myself on the back for providing unsolicited help and consolation, than paying attention. My heart was in the right place, but my head was uh—elsewhere.
* * *
I was introduced to a couple at a party that included both friends and strangers. My friends all knew about the ataxia, but most of the strangers just ignored me or wondered in silence. Seeing my walker, persistent sitting posture and nearby helping spouse, the man asked, "So Tammy, how did you get here?"(the disability, not the party). His wife was mortified that he would ask me how this had happened (whatever this was) and tried to shush him. I gave him a brief (I'm sure he was grateful) explanation of SCA and will remember him always. He was my hero for being direct. The takeaway was if that I don't "get" a given situation, I can ask; recognizing, of course, that not everyone is inclined to talk. It's easy to forget that, while quiet on occasion, I'm a oversharer by nature.
The lesson: I have learned that having ataxia gives me no special insight into life's other happenings. If I really need to know something, I'll just ask.
Solitude Is Not a 4–letter Word
Skeeter and various other devices (computer, tablet) are my companions in solitude. I am still aware of the loss of coordination (speech, gait, hands), but they aren't. It can be easier to be in the company of inanimate objects. I do not need to give them any thought or consideration. Ironic that that is important to me, given that no one in my life makes any demands on my time.
I have come to differentiate peaceful solitude from lonely isolation–I do not think I grasped the difference when I was young. I always thought the more people around, the better–even as a shy child. I still prefer being with people and enjoy social occasions. My important peeps know about my ataxia and do not care. I am grateful for that. I do not foresee a time when I do not think about how my struggles appear to others, however close they are. In solitude, I can choose to not care.
Solitude may afford me the opportunity to figure things out on my own but, some day it is going to backfire on me. Family and friends always struggle with offering just the right amount of help–too little, too much, too early, too late? I am often the one to get it wrong. I remember my children, hearing me fall out in the garage, trying to decide whether to ask if I needed help. I'd always said, "Trust me. If I need help, I'll ask." They could hear me on one side of the door and I could hear them. I should have just told them I was OK. My daughter–in–law finally gave in, checked that I was conscious, intact and then went back in the house. Sometimes you just have to say, "Oh, to hell with it," and do what you think is best, no matter what a person with disabilities says. Life is too short to spend worrying about emotion when a physical aspect is more urgent.
One morning, I met my friends for our customary breakfast club. Afterward, my friend walked me to my car and reluctantly left me to get into my car and drive home. Tripping over a sidewalk crack, I promptly fell head over rollator onto my face and into the street. After ascertaining that nothing was broken and I had all my teeth, my next thought was, "Thank heaven there's no one around!" That sounds a bit self–destructive and if indeed I had hurt myself, I would have been grateful for the help. But, I was able to get in the car and drive home, thinking about how I was going to explain my face. There were obvious facial abrasions and I made Angelina Jolie look thin–lipped. My vanity needed to be put aside for awhile.
It is hard to deal with another personality change–the increase in touchiness. I was always known for not being sensitive (as opposed to insensitive). I have noticed that sensitivity increases as solitude decreases. On occasion, I have to give myself the surreptitious "timeout". If you are ataxic, you are often also assumed to be unhealthy, demented or hearing impaired. I have to make a special effort not to sarcastically snap, "Thanks for the tip!", my sister–in–law's "Ooh–ooh, let me write that down" or my personal favorite, "That never occurred to me". I'd like to say I do not, but I do–often. After all, I am my mother's daughter and she was such a smart ass. Sometimes, I feel like I do not have the same "freedom to fail" that other people have. Not that I want to ... break a glass, fall, forget, etc ... but I'd like to at least be able to without the event being attributable to ataxia, even though it probably is.
Although I have always been easy–going and friendly, I find I need to be more thoughtful toward that end now. I do want family and friends to look forward to being around me, rather than dreading the encounters. One challenge is convincing people that leaving me home in solitude is not punitive, without seeming to be reclusive or becoming reclusive. Skeeter has made a major improvement, as I have a way to venture out more. But, I still love quiet solitude and have learned to enjoy my own company (never thought that would happen).
I am, by nature, a nice person, but ataxia has caused me to be an occasional stinker. I ran into a former coworker in the grocery store last week. Fortunately, I had makeup on, so when she (trying to be gracious) said, "Tammy! You look good!" I took a deep breath, paused and said "Thanks" instead of "How the @#*& should I look?" When I got home–timeout! All I can rely on is that I am not known for being a stinker. When I am, I hope the unwitting victim remembers that.
The lesson: "What a lovely surprise to discover how UN–lonely being alone can be."–Ellen Burstyn
"Carry a cellphone"–Tammy Schuman
The lighter side of progression: Assistive devices
I have alluded to this in the past, but when I sit down on Skeeter, I get this overwhelming, calming sensation. When I am scooting, there is at least a reprieve from any potential fall. I am used to falls being an inevitable part of life and breaks (break as in pause, not fracture) from that are welcome. The perfect fall (apart from none) is one where no injury is incurred, there are no witnesses, but first responders are at hand if required. It is not that everyone hasn't fallen for one reason or another and people are quick to offer aid and assistance, but it is embarrassing to the fallee and distressing to witnesses. I am happy to take responsibility for being clumsy, leaning too far, drinking too much wine–even the "I just fell" fall. I just do not want to share responsibility with anyone, unless they pushed. It is my journey after all.
Excerpted from Scooter Sagas by Tammy Schuman. Copyright © 2013 Tammy Schuman. Excerpted by permission of iUniverse, Inc..
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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